Alan Dienstag —
Alzheimer's, Memory, and Being

Alzheimer's disease has been described as "the great unlearning," a "disease of memory," a "demise of consciousness." But what does it reveal about the nature of human identity? What remains when memory unravels? And how might such insights help Alzheimer's sufferers themselves?

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Guests

is a Clinical Psychologist in private practice in New York City and Westchester County

Pertinent Posts

1

A moving visual reflection on memory and relationships, absence and loss, and on the frail, tender love between family members.

Selected Readings

Lessons from the Lifelines Writing Group

by Alan Dienstag

Few illnesses inspire the kind of dread as that caused by the prospect of Alzheimer's disease, which is understandable. For people in the early stages of the illness who are experiencing impairments but still entirely cognizant of the dissolution that lays ahead, the challenge is to construct a life in the shadow of an advancing darkness: to answer the question, "What is the point?"

Intimations of the Great Unlearning:

by Gisela Webb

What remains after the unraveling of mind, language, and knowledge in Alzheimer's was there in the beginning.

Selected Poems

Oblivio Gate

by Sean Nevin

A poem with seven parts. We excerpted a portion of part IV for the end of the program — and included the poem in it entirety online.

Self-Portraits from the Widow House

by Sean Nevin

A grouping of nine poems based on a backwards progression of painter William Utermohlen's self-portraits chronicling his descent into Alzheimer's.

About the Image

The photographer with his 98-year-old father, who lost his short-term memory. As an act of remembering, the son documented his final time with him in "Days with My Father."

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123Reflections

Reflections

Incredible story there. What happened after? Good luck!

My mother died, finally, in May of 2007 after having lived with Alzheimer's (or dementia? no one seemed to know which, and it really didn't matter, for the symptoms are the same). While my sister, who lived near my mom, bore the brunt of seeing to my mother's care and the moving of her into a nursing home, I have come to think differently about memory, love and humanity.

First, the suffering I saw, quite literally, in the early stages of my mom's decline, when she was trying very hard to figure out the answer to a simple question, was I'd thought the hardest part of the disease for her. The panic at trying so hard to remember showed on her face. At one point she asked me, "Why do you keep calling me 'Mom'"? I was crushed, taking her question at that time, as a loss of her love for me when it was truly a loss of her memory. Not just of me, her daughter, but of a mass of other pieces of information that confused her.

Second, I now question the humanity of medical progress and interventions that can keep a person like my mother, in the very advanced the stages of Alzheimers, alive. And I use the term "alive" loosely here. For 3-4 years before her death, my mom had no "life," or so it seemed to me. She was lost in the past. She was bedridden, wore diapers, scratched her bottom when she felt the need, and looked much like the shell of a little bird. I know that my mother, a woman of keen intellect and high expectations regarding appearance, would have been terribly humiliated, even shocked, at her own behavior and appearance. I think, though I cannot be sure, that she would rather have been dead than alive in this shape. She didn't speak clear words, but babbled constantly, and not about "happy" memories. One could see this by the look on her face as she "talked" to no one present. She was agitated most of her waking hours.

Finally, my sister, the one who got all the calls from the nursing home when my mother had a medical "emergency" and had to authorize them to take her to the hospital decided, with much guilt I should add, to sign off for palliative care only for my mom. That was the best decision she could have made, but it haunted her until my mom died, even though I made it clear that I supported this absolutely "humane" decision.

In the end, I can say that both my sister and I felt relief upon our mother's death. And, of course, we grieved over the finality of that loss. Yet, we had been grieving for over seven years, the period of time our mother was no longer herself.

I believe in the humanity of palliative care only for those lost to Alzheimer's disease. I also believe each family must make its own decision in the matter. I am sorry for the losses all sons, daughters, spouses, and grandchildren feel when their loved one loses his/her memories of them. And I still wonder, "What was going on" in my mother's brain and soul during her last years.

She did NOT lose one of her personality traits, though: anger. Her last communication with me (or whomever?) was to flip me off, which of course sent my sister into a laughing fit, and finally I, too, laughed.

Your story is so much like mine it was if I was reading my own story. My mom passed in 2011 with alzheimers she lived on her own for 4 yrs and one in a nursing home. She cried ALL the time. it was heart breaking to me. I could tell you so much . I think there should be a link or something where people could like in the old days ( penpal)

At age 52, my husband was diagnosed with early onset dementia, probably Alzheimer's. Today, at 54 he can no longer drive, follow any but the simplest directions or follow conversations.

We got married when I was 40, and he was 39. We have been blessed with two healthy children, our son Abraham when I was 42, and our daughter, Hope when I was 45. Today at 9 and 13, they assist in helping their dad make sense of the world, or at least navigate the shoals onto which he is often thrown.

When Mark's symptoms first began to emerge, and we finally had a diagnosis, I said to the children, then aged 7 and 10, "God's asking us to do something really big for someone we love." It was a moment of grace to see it that way. Being asked to do something instead of being condemned or forced to it helped make it easier to bear.

How does it change the way I love? One of my friends said to me, "Yeah, everyone says 'for better or worse,' but no one really expects to have to mean it!" Much of my love now is focused on working through difficult emotions, avoiding upsets, creating meaningful work for Mark to do, encouraging him and surviving myself. It isn't romantic, but rather some strange combination of practical and poignant. If I let it, my heart would break every day for what he cannot do.

Two years ago, five months before the diagnosis, he flew to Texas to receive a national award for the work he had done for years defending immigrants facing deportation. He was the "go-to" person for people with hopeless cases. Other lawyers, looking at their clients would say, "If anyone can help you, it's Mark Kenmore." Yesterday, asking him to rake up trimmings from the hedge, I found him using a broom to sweep the deck -- and he was surprised and hurt when I pointed out that that wasn't what I had asked him to do.

Mark had an amazing memory. I remember during our courtship he could quote whole sections of C.S. Lewis Narnia tales, and many other children's books he remembered from his youth. His law partners used to use him as a walking concordance in the days before everything was a google search away -- he could usually cite cases without looking them up.

My memories of our earlier ten years are, at the moment, tainted. I regret nothing, but I remember those earlier years the way I remember being 7 -- someone was there, and it was me and yet it was a part of me I don't have full access to anymore. I'm sure that in part, the disease and my strugggles to deal with it compassionately color my memories of our past. I can't think about them too much, because it hurts. When Mark is no longer with us, I will have time to remember.

While Mark cannot get out more than a few sentences, and cannot follow directions, and cannot often respond appropriately to other's troubles, he remains a sweet man. He can still stretch his arms out wide, smile at me and say, "Love you, Susie -- love you big time!"

My biggest lesson is to live in the present - it won't get better than it is now, and nothing is more important than this time together.Every once in awhile, I turn the radio to some of the songs I grew up with -- rock and folk music from the 60s and early 70s. The songs about love and betrayal seem odd to me, a bit off. That isn't really love as I know it now, but some other initial fire that burns out if not tended with intention and commitment.

People feel badly for me, but as the Buddha told us so long ago, everyone suffers. I tell people, "You know -- it really is terrible to see someone so amazing lose so much. But, remember, there has been no betrayal, no "other woman," no lying to me." The financial mistakes that indicated the onset of the disease were just that, mistakes because a brain wasn't working anymore. Mark's response was to work harder and harder, suffering exhaustion as he tried to do what he used to do with a brain that wouldn't work.

I remember when the neurologist sat with us and broke the final news after we had eliminated causes like sleep apnea, depression, exhaustion, vascular issues, etc. Mark didn't understand. One blessing of the disease is that Mark has never known what trouble he caused or causes, nor does he understand the prognosis. That is the caregiver's burden. I remember hearing the neurologist's words, looking at this man that I loved and married and thinking to myself, "I'll never be angry with him for anything again." Of course, I am no saint. I need to forgive myself a thousand times a day. I am a quick moving, impatient person learning patience an hour at a time and forgiving myself for snapping at a person who can't help it. I got angry with him before he was ill, and now, even though he can't help it and isn't responsible, my immature emotions don't always understand that.

But, as the disease goes on, and I adjust too, I find that there are times when I can easily be tender: putting a shirt on, then off, then on again in keeping with the desire of my husband, or his confusion about whether a T-shirt goes under a button down shirt or over it.

I grieve most for my children. I had wanted a different life for them. My daughter will not remember much about her magnificent father, but only the man who sometimes folded all the laundrey wet and wanted to put it away fresh from the washing machine. I will need to tell her stories.

My son has the same sort of remarkable memory that Mark had before he became ill. He will remember more and I will ask him to tell stories too.

Though it often feels that I live inside a bizarre Picasso painting with perspective shifting hourly, I know that love and our Quaker faith create the narrative thread we need to get through this labyrinth. Ariadne, the Greek goddess or princess gave the hero
(Theseus I think?) a ball of string so he could go slay the Minotaur and then return from the labyrinth. The love and support from our faith community, our own faith in God's goodness, and our Quaker faith braid together into the thread that allows us to tell and live a tragic story, and not be destroyed by it. We too are heroes.

My husband of 29 years died on Good Friday this year from dementia/Alzheimer's. Doctors still debate exactly what he had. The disease intensified our love and we interacted up until 48 hrs. before he died, although our connection remains. What has changed is my reliance on the medical profession -- NOT! Of course this needs more discussion. What has also changed has been seeing the experience as a metaphor for what happens with the Christian tradition and with local churches. Right now I am working on how to put all this in writing. There were four characteristics we experienced that I find applicable: inability to take in new information; when the diagnosis is not the diagnosis; keep doing the same thing long after one has forgotten why one is doing it; when the end of life as we once knew it is not the end. I am a church history professor at a Baptist seminary, was Conrad's primary caregiver and did give a series of talks communicating these ideas that was well received. More formal writing still remains. I also wrote some free-verse poems about the experience and am willing to share these if you are interested.

Dear Speaking of Faith:
I think the following is a little long, but for what it’s worth, I thank you for the opportunity to share it. Pat Gonzalez

My Mom, Margaret White

Every victim of dementia is an individual. My mom, Margaret White, was born in 1928, the eldest of four, but the last to die and the only one to have dementia. Growing up, she skipped a grade, attending the University of Illinois at the age of sixteen until old enough to enter the St. Francis School of Nursing in Peoria, IL a year later. There, she graduated with honors, met and married my father, had me 11 months later, followed by 4 more children over a span of 18 years.

In 1997, on Thanksgiving Day, with the entire family gathered for the traditional meal, my father died suddenly of a heart attack. With his death, I came to realize how much he’d been helping my mom in her daily life and activities. A year later, she was diagnosed with Lewy Body Disease, a form of dementia similar to Alzheimer’s that can include black outs, hallucinations and Parkinson like symptoms along with days of feeling and acting right as rain, especially in the beginning.

I learned a good deal, some of the lessons extremely harsh, after ten years of dealing with my mom’s disease and her eventual death in December of 2006. For starters, I learned there is no one, perfect way to deal with dementia, as is true of many of life's problems. I didn't know that, or, at least, I didn't believe that, and I would often wake in the night, second-guessing everything I'd done with and for my mom. I still do, at times, even though she’s gone now.

The first wrong I felt I committed was in not insisting my mom be brought to my house instead of a nursing home. My mom had fallen, broken her pelvis in three places (she also had osteoporosis) and she had stints in her kidneys from complications. Because, of course, my mom’s fall wasn’t planned, the family had to choose between the only two nursing homes in the area with available beds. I wasn't alone in the choice or placement or in any of her care decisions - I had four siblings, which brings up another difficult lesson I learned -- that other members of your family may love the same person with dementia that you love, but they may not see the situation as you do. And, sometimes, because of differences in perspectives, the relationships you once had are never the same again.

When decisions do turn out badly, I learned ours is a society with lots of different agencies and organizations that can help. Sometimes it's tough finding the right people, but they are there. In dealing with my mom's illness, I dealt with hospital social workers, elder abuse counselors, the Alzheimer's association; I attended seminars and support groups, visited web sites, and contacted the Illinois Department of Health. As you can imagine, I wasn't dealing with the latter for a good reason We had to report the first nursing home into which my mom was placed because of the poor condition in which we found her two days after admission, two days in which she went from doing well to being completely dehydrated and, ultimately, taken by ambulance back to the hospital.

I have to say, however, that although those years held bad times, surprisingly, they also held good times. At the new nursing home to which we moved my mom after the hospital stay, she as placed in a room with a woman named Gertrude who my mom said was the sister she never had. They became fast friends - tiny, physically ill Gertrude, who, at eighty-something, knew exactly what was what (there was no dementia wing), and watched out for friendly but confused Margaret. Both had had five kids. Both were ex-nurses. Both Catholics. Both prayed the rosary together.

I had good times with my mom during this period too. We bought her a CD player and sang along her to tunes by Bing Crosby, Frank Sinatra, Rosemary Clooney, and Jimmy Durante. She became known as the “lady who sings the songs,” and as time went on, the lyrics of those songs were the last to leave her memory. I was also lucky enough to be able to arrange to have Fridays off to drive the hour over to her nursing home and take her to lunch at the nearby Jubilee Café. We were such regulars that the waitress brought hot tea for her; iced for me, the minute we walked in. My mom would talk, mainly about long ago days with her brothers and her parents, which I enjoyed. Sometimes her conversation confounded us, like the time my daughter Anne, then 15, and her friend Jenny came with me to take her to lunch. Seated at the table, my mom began telling us about a beauty pageant she'd been in recently. I looked at the girls, and they looked at me, our eyes popping with question marks. "A beauty pageant?" I said to my mom. "Yes, and I won!" she told me, so very proud of herself. "You did?" "Yes," she said, "and I was so surprised, because, well, you know, at my age, I'm not all that curvy, but I won because I knew all the names of the fruits." Fruits...!?

I couldn't contain myself any longer. As soon as I started laughing, Annie and Jenny let loose with my mom following suit. We laughed so hard we had everyone in the restaurant looking our way. When we finally started breathing again, my mom leaned over to me and said, "By the way, who are these girls eating lunch with us?" "Your granddaughter Anne and her friend Jenny." I told her. "Well, they're nice girls," she announced. And that was that.

As time went on, sorrow and bad times engulfed the good. Gertrude died. My mom, a fairly gentle person all her life, started having days of extreme agitation and anger, of wanting to leave the nursing home to go to school, to go to work, to take care of her children. Instead of empathizing with her, the staff, untrained in dementia care, would argue with her. My mom also had days of incontinence about which she would apologize over and over. Days of knowing something was wrong with her mind but not what. One of the saddest times, I arrived for a visit to find her sobbing, saying, “I can't remember yesterday." I told her that she was safe, that she had a disease, that I was with her. At that point, she still knew me, and what empathy and reassurance I, or anyone, could offer became for her, a comforting sanctuary.

Even if my mom wasn't in the same time and place we were or didn't fully understand what was happening to her, she always understood commiseration and reassurance. And she understood tone. If my tone, or the aide's tone, indicated understanding and respect, it made a world of
difference in my mom's ability to cope with any given situation. I guess you could say the golden rule applies even with dementia victims – however you would want to be treated, that's how people with dementia want to be treated.

Often, however, she wasn’t treated that way. At different times over the years, we found her soiled to her ankles, bruised, her wedding rings stolen (I know, they shouldn’t have been on her fingers), forgotten, wandering in a field, covered in gravy and food bits from trying to feed herself with her hands because no one would help her. I would address these issues over and over and go home in extreme guilt that I was not taking my mom home with me.

When we moved my mom, yet one more time, to a facility with a dementia wing, we discovered, among the many staff members, a nurse and a few CNAs who did understand that this golden rule applied to everyone, even and especially people with dementia. The nurse, named Kathy, pitched right in with the CNAs no matter the task. She seemed to truly understand Alzheimer's and other dementias and knew her stuff when it came to medical needs and treatments. Moreover, she treated the residents as people. I watched her take the hand of my mom's roommate, Harriet, sit down so she was at her level, look into her eyes, and listen intently to what she was saying. Not absent-mindedly. Not condescendingly. But as if she were really there for her, no matter that Harriet, 95 and a former kindergarten teacher, was explaining to her, “I don't belong here -- you see, I'm lost. I've been lost for quite awhile now." Kathy held her hand, told her she understood, and offered to make her coffee which she knew Harriet liked. That may not sound like a lot, but it meant the world to Harriet and to me, an onlooker, who was leaving my mom in this nurse's care and in the care of a staff who followed Kathy's lead. I learned that Kathy and her CNAs are the true heros of our society --- the true humanitarians, the true celebrities of life. At least, they should be. They deserve time off with pay for further training, better pay all together, and above all, our respect and admiration.

Finally, as more time passed, with my mom severely deteriorated, we decided that only comfort care would be appropriate from then on, which included withholding antibiotics, so when she contracted pneumonia we stuck to our guns as difficult as that turned out to be. She received morphine during that time, but for what seemed an eternity, she looked as if she were suffocating, and just as I could not save her from all the indignities and torments of dementia, I couldn’t save her from this final agony either. Afterward, the various people I talked to, from doctors to nurses to chaplains to hospice workers, disagreed about whether my mom did or did not feel what she went through, but for about three months, I felt I would go crazy with the memory of it --- her head arched completely back, her mouth as wide as it could be stretched, trying mightily to take in air. And then, finally, she was at peace.

How did I cope with all the above. I talked to people, most especially my husband, Ernie, and my children, Joe and Annie, who went from the ages of 8 and 12 to the ages of 17 and 21 during the time their grandma was ill. I have to say the three of them were, almost without exception, wonderful throughout even when I'd throw a tantrum or two about everything that was happening to my mom; I complained to the minister at our church about life’s unfairness which after nine years I’m sure became tiresome for him but as old as it was for anyone listening, it was also that old for her and for me; I listened to music; I cried on the drives home; I cried at home; I hated myself, life, lost my faith in any kind of God; I also learned to forgive myself (most of the time), do what I could in the life that I was living; replace the word “God” with “Kindness.” I read books about dementia; I did tons of research through it all, including about the awful way my mom seemed to have died; I talked to a wonderful hospice counselor; and most surprisingly, I missed my mom when it was over – I mean my mom who had dementia -- even as I was thoroughly relieved for her and for me, and I wrote and wrote about my mom. The following are three poems from those years that best reflect her story, and mine, of her life with dementia:

Love

I rub the lotion into my hands,
Warming it, watching you
Sitting there, your entire body
In a crooked lean to the right.
Slowly, I place my fingers
Upon your forehead,
Spreading the lotion
To the line of your all white hair,
Massaging gently
Around your almost blind,
Half-closed eyes,
Your mouth that initiates
No conversations anymore,
That barely knows, some days,
How to eat, how to drink,
Down along the lines of your neck,
Your throat, with its faint
Vibration of the sound
You hum without ceasing.
I lotion your uncontrollably shaking arms,
Then your hands,
Taking them into mine,
Letting my eyes rest
Upon the fifty-two-year old clasp
Of our lives together.
No one should have to live
Like this, I think,
And yet, I know
I've never touched,
Never loved
All that you've been,
All that you are
More than now.

No Longer There

I see her in the corner
The left side of her face
Midnight blue with bruises,
Her eyebrow stitched together-
My sister called me
The previous night:
“They say she fell,
And her rings are gone,
Probably stolen.”
I walk toward her,
Look down at her left hand
Resting, bare and lonely,
On the arm of the wheelchair-
The rings she had worn
For some fifty years-
No longer there.
I sit down beside her,
Holding resignation like a pillow
Over the face of my heart.
Oh well, what does it matter;
So much of her is gone—
The parts of her that made
And carried me into life,
Inch upon inch from her
Endlessly collapsing spine,
Her vision of anything but gray,
Her mind and all it ever knew
From the lifting of a spoon
To the name for a spoon
Or even the person it feeds--
Her name, Margaret.
So, what are circles of gold,
Anymore, to her or to me.
My dad, who paid five dollars
A week, to buy them--
He’s also gone.
He went so fast,
It knocked the wind
Right out of my heart.
She’s going so slowly,
It’s knocking all the sense
Out of life.

So Small

Lying in the brown recliner
Next to the nurse’s station,
She looks so small--
Her spine collapsed upon itself,
Her limbs, bent scarecrows
Of the arms and legs that once lifted
And carried so much, her hands quiet,
Her mind the thinnest tissue of a life
Once running deep with color….
I remember her standing
In the kitchen of the first house
She and my dad ever owned.
She made pies and jellies and jams
From the cherries, plums, and apricots
Grown in the backyard there,
And meal upon meal, she cooked for us.
Through all the years of our growing,
Our leaving and our returning;
She brought that food without fail
To a table we thought eternal.
And I can remember,
How she’d guide our clothing
In and out of the wringer-washer;
Answer our childhood diseases
With her nursing school wisdom;
Climb the stairs to protect us
From nightmare-invaded dreams.
Now, she is as small,
As the young girl I was back then
Some fifty years away
From what I would have found incredible –
Her lying here in a life so reduced
That all I can do is smooth her forehead
With the fingers of my aging child’s hand,
The only answer I have
For her and for my desire
To lift her into my arms
And rock her to sleep forever.
--Pat Gonzalez

I read your Mom's story and your wonderful poem. My heart is aching.
My mom is 94 with dementia, but not severe. Still walking, talking living in assisted with her 94 year old husband.
My 75 year old husband is now having memory issues. We are beginning ":Cognitive Therapy"
Both of us frightened.
Thanks for your story.

I am an active Episcopalian and currently serve as board chair of the Connecticut Alzheimer’s Association. My mother, Ysabel Rennie, was diagnosed with vascular dementia – a first cousin to Alzheimer’s disease – in early 2003 and died two years ago. I am attaching a link to a slide show we put together for her memorial service (give it a minute to boot up). The following is adapted from my eulogy:

When I took early retirement several years ago, my plans did not include becoming caregiver to an elderly mother. My brother and sisters did not think I was temperamentally suited for this assignment, and they had a point. I was not a notably patient person, particularly with my mother. Any yet none of my siblings was then in a position to step in. Fortunately, by this time I at least understood that the lessons life has to teach are not always of one's own choosing.

My mother turned into a sweet old lady toward the end, which saddened those of us who knew her before she forgot who she was. We remembered her as smart and feisty, with a sharp wit. She had been an intelligence analyst in World War II, ran John Kennedy’s presidential campaign in Ohio in 1960 and wrote four books. She was a crusader for prison reform, the subject of one of her books. In her seventies, she served on the city council in Sedona, Arizona, where she and my father had retired.

She was always a bit forgetful, just as I am now. But after my father was no longer around to handle the details, she was forced to adopt more and more elaborate stratagems to keep track of her life. Then she couldn't keep track of her stratagems. She was still reading the Wall Street Journal and The Economist every day but couldn't recognize her grandchildren or even old photographs of her own kids. She had begun writing her memoirs for the benefit of the family but had to stop halfway through as her memory began unwinding in reverse. She started to get lost driving around a town so small it had only a couple of traffic lights, and she began obsessively repeating things aloud to herself so she wouldn't forget. Her life had become a fading dream.

There is a natural desire to want to remember your mother at her best. But I found her final years to be a revelation, although unspeakably sad. If you do not avert your gaze, there is much to learn about what truly abides after everything else has been stripped away by disease and the ravages of time.

My mother moved into an assisted living facility near my home in Connecticut. She would sit all day in a recliner watching television programs that I suspect were mostly of interest to her live-in aide. She dozed much of the time, facing a desk with photographs of her children, her grandchildren and her two great-grandchildren. I would point out one or another of these to her as I brought her up to date on goings-on in the family, so she can put a face to a name, if only for the time it took me to tell my tale. The desk also held a framed citation from the governor of Ohio lauding her for her long-ago work in prison reform -- another memento from a life she no longer recognized as her own.

My mother's one remaining vice was Hershey's Miniatures, which she would eat by the bagful if we'd let her. Her live-in aide began to ration the candy supply when the dentist kept finding new cavities on every visit. My mother always had a bit of a sweet tooth but lost all inhibition in old age. In this and in other ways, she became like a small child.

Who are we when we no longer remember who we are? Descartes' formulation didn't apply in my mother's case. How can you say, "I think, therefore I am" when your mind has been hollowed out from the inside? Did this make my mother something less than a person? Objectively, she was less than what she had been but no less a person. As her dementia progressed, it is not just her memory but also her personality that began to unwind in reverse. Layers of old paint and wallpaper peeled away to reveal the fine grain of the natural surface beneath. I could see the person she must have been before I ever knew her. First, there was the adolescent resentful of the reversal of roles that characterized my relationship with her toward the end. Gradually, however, the child in her was reborn, loving and docile in a way she had never been as an adult. Is this not a person? To such, Jesus said, belongs the kingdom of God.

I am richly blessed. I am tired. I am honored. My heart breaks on a regular basis. I am my mother's caregiver.
Seventeen years ago, my second marriage had crumbled and my mom took me and my family in. We thought it was a temporary situation, but as it worked out, we ended up becoming partners in raising my two girls, who were then 3 and 6 years old.
Mom's health started declining about eight years ago. In my heart, I knew that I would be the one to take care of her long before that. Mom had several bouts with GI bleeding, but what really slowed her down was a fall six years ago, when she broke her back. No more driving. (A blessing in disguise to be sure!)
I remarried four years ago. My husband is a wonderful man who had no qualms about giving up the bachelor life and moving in with a new wife, two teenage daughters and his mother-in-law. A brave man indeed!
About one year after we were married, mom was diagnosed with mild to moderate Alzheimer's disease. I swore it would not take over our lives too. In reality...it has. Now that I know the disease better...I see that was inevitable. There was just no way it could not.
I had heard it was called "The Long Goodbye" and was prepared mentally for this to be a slow progressing disease. That hasn't been the case. I cut back on my hours at work, to be home more, with mom. Then I cut back days. Two years ago I left my job (of 26 years) to be mom's full time caregiver. I feel like the disease has progressed quickly. It seems that by the time I get adjusted to how things are...they change. Mom has gone from walking, to using a cane, a walker, a wheelchair (but still being able to stand for a few moment) to now no longer being able to bear any weight on her legs. She depends on me to get her up out of bed, set her on the commode, clean her up afterwards, put her in the wheelchair, get her meals, help her eat, clean her up, dress her, bathe her, clean up after her accidents, give her the right medications, handle her finances, schedule her appointments, keep her safe and comfortable...and keep her connected to the "outside world" (meaning; family, friend and church).
Now that you have a pretty good picture of where we are...how has it changed the way I think about love, memory, personality and humanity? Wow! Thanks for asking!
Preparing for Mother's Day this year was interesting. I was anxious about it. We had spent every Mother's Day together for the last 23 years...since my oldest daughter was born. I knew it would be our last one together. (Mom is fully in stage 6 of AD and partially in stage 7...hospice became involved earlier this year.) I found myself being more present all day long. Listening more carefully, being more gentle, more patient. At one point she asked me, "Do I know you?" I said, "Yes. I'm Deb." Then she asked, "Do I OWN you?" And I replied, "Yes. I'm your daughter. Happy Mother's Day." And I gave her a kiss. Mom doesn't always know me. That's fine with me. Sometimes she calls me Deb, other times it's "Brownie" (my dad's nickname) and she has called me "that other girl." Usually, she calls me Mom. I guess it's because that's the role I play. One day she looked at me and said, "I don't know who the hell you are...but I trust you." And that's the bottom line. We are in relationship.
Usually mom is a very pleasant woman to be around. When that changes, I have learned to alert the nurse. If mom is crabby a couple of days, or weepy...there's something wrong. Even if she says everything is fine. Twice this past year, those have been the tips that she has had a mild UTI. I have learned to read her very well. And she has learned to read me very well also...even if I don't say a word. I often take deep cleansing breaths before going in her room in the middle of the night when she calls out that there are people or animals in her room. I don't mind if she sees that I am tired. When that happens, she slips into her mother role and says, "Oh sweetie, why don't you go back to bed?" But, I don't want her to feel bad because I'm irritated that "bed" is exactly where I want to be..and would be...if she hadn't called out. I do the same before I have to clean her up after a bathroom accident. I don't want her to feel worse about losing control of her bowels. It's kind of funny, but when I'm kneeling on the floor in front of her, cleaning up...I often think of Jesus kneeling at the feet of His disciples...washing their feet. "For I have given you an example, that you should do as I have done to you."
I have learned so many invaluable lessons from my mom. She has taught me to trust in the Lord, to welcome everyone in, to celebrate life as it happens, to leave people and places in better shape than I found them...and to be aware of and thankful for, the many blessings which God gives me...daily.
As I watch mom's life come to an end, I see her with the same loving eyes I viewed my daughters with, when they were babies. This disease is like watching a baby's growth...in reverse. Not too long ago mom was able to walk, communicate well, eat with utensils, dress herself and use the bathroom alone. Now she has gone back to being dependent on someone (me) to take care of those things for her. Soon, she will no longer be able to sit up, she will spend even more time sleeping and swallowing will become even more difficult. Every day I grieve losing her and I praise God that I have her. It's a strange dance of letting her go and hanging on to every moment. It is a comfort to me that when the Lord decides to bring her home to Him...that I know she will be whole again...and that we will be together again.
Someone asked me a while ago, "Does your mom still know the Lord." I was bothered by that. I don't know. She doesn't always know me. Then I realized...that wasn't really important. The important thing is that HE still knows HER. If she doesn't know Him...it's not her choice...it's just the way it is. And He knows that. He has taken up permanent residence in her heart...and He will not abandon her because her body and mind are failing. Praise God!
Deb Schulz
PS...I know this is overly long. For that I apologize. But thanks again for inviting me to share!

Our mother flew up from Florida, planning to help my youngest sister care for her firstborn, Alex, now a high school senior. Patty watched, startled then scared, as Mom tried to fit the vacuum hose attachment onto a broom handle, frowning and muttering in her frustration. It was the first wedge of the disease that transmogrified her over an eleven year spiral into a voiceless effigy of the brilliant, witty wonder who gave us birth.

Our father was her caregiver for the first leg of her journey into dementia They had resisted each other's charms for decades by then, so one gift of Alzheimer's was the return of Frances's love for Johnny. Over the years she had gained the upper hand in the ongoing battle with him, resisting his difficult and stubborn ways. In losing her edge, she regained her Romeo. She basked in his octogenarian glory, and he relented, becoming gracious and caring…well, as much as he could. She would walk to him and pat his cheek. "Aren't you handsome? I love you, Johnny." As she repeated this all day long, it wore on his nerves quickly, but as she was now more and more dependent on him, his better nature bloomed in step with her increasing need.

Once they were both moved to the same elder care building, where she lived on the Alzheimer's floor and he several floors below her with the still sharp-minded, he maintained his interest in her and showed patience we had not seen for decades. He visited her several times a day, and treated her gently, except for becoming angry if a male patient walked with her down the hall. His reaction was ridiculous, given that it was the Alzheimer’s ward, but that was Dad for you. For the most part he spent hours every day talking at her about -- of course -- his memories and theories. Their marital problems had been the result of an ongoing power play between equally matched matador and bull, her provocative cape stimulating as well as eluding the bull's charge.

Our father died six months before Mom. We wondered what to do, if she could understand, but brought her down to his bedside, laid her hand on his still warm body, and told her straightforwardly that he had died. She looked puzzled and said nothing. We spoke of their love, good memories, embraced her, and brought her back to her room.

We think she knew he was gone. She may have missed his visits, because her decline was swift. Mom seemed blind. One day I brought a cassette recorder and played a recording of Dad telling a story, thinking she missed his voice. Her brow furrowed, and her mouth flexed. She looked almost surprised but not happy, so I slowly turned down the volume and turned it off, an apt metaphor for her interface with the world.

When she died her hands were arranged on top of the sheet, one atop the other, raspberry nail polish adding festive spots of color. Her three daughters wept that any one of us could see her death as a welcome end. We did.

We three fear that end. Statistics are not encouraging. Our chances are one in four if a parent had Alzheimer's. I retired earlier than I otherwise might have done, so I could write and make art. We are beginning to remember the woman Frances had been but are still sad about her lonely journey, adrift in the midst of grateful daughters.

I wrote several poems about her transition; here is one:

Alzheimer's

we grow gradually motherless

dementia dismantles her like a

slow motion shredder

functions hygiene features shrink

too soon watery minnows swim sightless

in her fading face confused by near time first

then far away she sinks immobilized

in oozing sap, eons of amber

wrapped in bolts of unbleached time

of fever dreams in solitude

as we stand by her side her

moth-eaten mind bewildered

her roommate raving

My parents were married 56 years. They taught me love and humanity.
And they gave me my personality. They were fun, happy people.
They were loyal to each other and the family always.
I help take care of them for the last ten years of their lives.
I was amazed at the love they gave to each other for so may years. My mom, even though she was loosing her memory, would remind me to tend to dad.
My dad used to change my moms diapers. Thats love, and the best side of humaity. He went to see her five times a day after she went into the nursing home. Thats love. That was their personalities. Mom would of done the same if places were switched. Mom looked bright when dad came into the room. Dad would dance a jig, sing a tune just to make her smile, even though his heart was breaking.
Dad always wanted mom taken care of first.
Mom loved to look at the picture albums. She would tell old stories she could remember.
Mom used to nurse us when we were sick, get up in the night, all hours, give us a reasuring smile, stroke our heads.
My mom and dad sat in straight back chairs with me all night, waiting for my daughter to be born. Mom prayed. They rubbed my back. Gave me encouraging words.
I could do no less for them when the time came. I was devoted because they taught me that, I love unconditionaly because they taught me that. I faught for humain treatment for both of them because they had done it for me. I was blessed to have them for as long as I did.
Th

We as a people need to make sure every generation gets training in how to love, how to build and share memories, show a positive personality ( even if your heart gets broken) and how to be humain to your fellow man or women.
Dad died of emphysema in 2000, Mom died of alzheimers in 2003.

Four years ago my mother, sister, and I started noticing my father losing some of his mental acuity. This change seemed fairly obvious with him as he had always been quite intelligent with an incredible memory. At the time, he was 79 years old. We talked to him about our concerns and he consented to have a doctor's appointment with the express purpose of evaluating his cognitive status. We were present when he took the "mini mental" evaluation and it was quite striking that some areas he excelled (counting backwards by 7s from 100 with no problems) while other areas were obviously affected (inability to recall specific words minutes later). He was diagnosed as being mildly impaired and was referred to a neurologist for further testing. At this appointment, after routinely ruling out other potential problems (such as Parkinson's, heavy metal poisoning, advanced syphilitic disease), his final diagnosis was mild cognitive impairment. It was not a definitive diagnosis of Alzheimer's because we had detected it quite early and sought help at that stage. However, 90% of people with this diagnosis will progress on to Alzheimer's. He was given a prescription drug that tends to slow progression for one year. After that year passed, another prescription was added to the drug regimen. He continues to take those drugs as an attempt to maintain the slow progression of the disease.
This has been a difficult but also positive experience for my entire family. It has been a struggle to watch my father relinquish so much--control of the finances, intellectual interests. Restricting his driving ability, thus limiting his independence, has been an especially difficult issue that we have had to revisit many times over the last few years. When we have family parties, he likes to continue to participate but sometimes he seems to get lost within himself, rarely carrying on a conversation with anyone, becoming overwhelmed with the noise and activity. On the other hand, Dad's condition has brought an awareness of the present that we didn't have before. Every holiday is especially cherished because we never know if he will remember us when the next one rolls around. He is more emotionally expressive, something that wasn't a typical characteristic of this stoic Norwegian farmer. I have heard my father laugh more in the last four years that I recall in the previous decades.
I have chosen to live close to my parents, on our old family farm where my father was born and made his livelihood as a farmer, so that as my mother needs help in caring for him, I will be available. My sister lives in Minneapolis and, after spending a year in California, was happy to return to be closer to our parents. We are relatively young (presently 34 and 30) as our parents had children later in life so our experiences with aging parents is fairly unique to our peer groups (our father was 48 and 52 when we were born).
I work in the health care field and have seen many families deal with chronic health problems. I feel we have done a good job of recognizing the problem and accepting it and its consequences. We have grown emotionally closer and as a family, are able to discuss more openly many subjects that others shy away from (putting my parents' affairs in order, making funeral plans, discussing health care directives like resuscitation). I've been trying to be more patient with Dad and as much as we have accepted his condition, I still notice a resistance in myself occasionally. When a problem arises, one part of my brain will be telling me to understand, to have compassion about it. Another part of my brain will be unwilling to accept the differences in Dad and can't let go of the idea that things will never be the same again. So it is a frequent struggle to maintain a positive attitude as a caregiver.
My sister and I have very different roles in the family. I have always been the nurturer and provider. She is very social and, when she visits, always has a very easy and positive interaction with Dad. Though we are close, we don't talk much about the pros and cons of the roles we've assumed.
We were very open with the community about Dad's condition. We live in a small rural town of 300 where everyone knows one another. We figured that if we had noticed Dad's changes, other people probably had also. By not keeping Dad's decline a secret we felt that people may be more compassionate and tolerant about mistakes or problems.
Living in the rural area surrounded by farmland, connecting with the seasons as they change, we have an awareness of the cycles of nature. I have worked with hospice and am also a homebirth midwife so we have many conversations about natural birth and natural death and how they are not just physical events, but rather emotional, spiritual, familial happenings that affect our lives forever. We intend to care for Dad at home as long as possible (preferably for the rest of his life). However, he still remains quite high-functioning and is in excellent physical condition so, as things are now, intensive care-giving is not an imminent concern. It's impossible to know where our path will lead with this disease but I'm sure that with our family and community connections, we will find the strength and love to deal with whatever arises.

My mother quickly succumbed in a matter of a few short months, after long battles with bodily health in her post-menopausal life. My father had became, without us children fully appreciating the commitment he made to her..... a 17 year long 24/7 caregiver, and we finally as a family, decided that to put him through this ordeal for even longer than he had already done so was a crime in itself.

The usual sibling worries were that "I am not going to commit her.... you do it... I am not going to have her turn around on me one day and blame me for putting her away ( from my sister who lived closest...) and of course this never happened.
In a matter of months my mother left the building (literally) or the body that she had inhabited for so long and simply has become... now that her chemical drug requirement has stabilized her.... a child like person with no memory of who we are and who she was..

My father bless his soul, still hopes (with his typically British stiff upper lip) that if we were to bring her home again, she would revert back to herself, and he would have his life partner back.... some company for him now that he is lonely.... the partner that shrieked and yelled and abused him for everything for ten years or more as she battled her departing self...

My faith helped me through this ordeal such as you can experience it from 7000 miles away, and several visits per year. My sisters quickly adapted to having less to do to look after her, since she lives now in hospice care, and we all, when together simply celebrate the awesome person that she was .... sadly remembering who she can no longer be.

The fact is we had a wonderful post war-time mother who always struggled lovingly to cope with life while she was with us... and who gave us the gift of appreciating everything we now 'own' in our lives, for the sacrifices that she, my father, and her wartime family (my grandparents) made...

We need to look at all older people in our community in this light more every day, and do more from them, or at least volunteer to help more.. in case they need it. For me the job of appreciating her has transferred to me to be a better father to my kids.. simply put.. that is what she wanted from me anyway.

I could grieve her departure... but I choose to celebrate her life as I remember her. It seems to me better to do this... SHe was a beautiful lady, mother, and woman, and if I ask one of my elder daughters to turn sideways, I can see her facial profile.... and I can hear her voice in my imagination... she is alive for me in so many ways

'BUD'

I know you don’t remember like you use to

“Dr” Bud – that former self - leaving bit by

by unknowable bit

What segment of your history has fled today?

The body that holds the features carrying the ‘Bud’ I knew

of laughter and sardonic wit – of brilliant ideas like raising

shrimp to feed the hungry - of dancing like a pro

Why does he have to disappear? And what do I say to this

person of that former person I held so dear?

We sit at the Backgammon table where you use to beat me

consistently – and now sits frozen with a dull stare, not able to move

a stone for fear of showing you are ‘gone’ – and I say over and over

‘just move it here’ or ‘where do you want me to move it?’

I play both parts – and all of a sudden there you are, you’re back! – sliding through to play again! ‘Great’, I say, ‘what a move!’ We roll the dice and you grin – so happy to be present again.

Later we sit and draw, lines across the page - I ask you to color some blocked off spaces to get you started and out of the corner of my eye, I see Ivy, your dear wife, beaming, so glad I’ve taken her stead for this short time in vying for your connections to this still-living-life. I miss you, Bud, my friend

(poem I wrote about my friend of over 40 years)

My husband had Alzheimer's for 8 years. He was considered early-onset as a 61 year old. I have written a memoir of our journey which is in the process of being edited called "Living On the Verge of Insanity:
Loving lessons learned from my sweetie’s early- onset Alzheimer’s disease".
I was 48 years old at his onset. The reason I wanted to tell our story is that I was able to keep him actively competing in sports and playing jazz for almost 6 of the 8 years by finding appropriate ways of keeping him involved in life. He was an exceptional 7-string solo jazz guitar artist, quite well known in that world. Ours is an upbeat approach to Alzheimer's and gives hope to those who are newly diagnosed. I used my Montessori Teacher training and my Life Coaching skills to have our lives continue to be rich, artistic and fulfilling. We loved until the end, which sadly came this past December. He was in a nursing home for a year and finally passed on.

My mother was diagnosed with Alzheimer's/Dementia in February of 2008. She is 82 and wants to die. I became her caregiver in late February. We decided we did not want her in any more care facilities because the care she had recieved in 6 facilities was awful. She would not eat, let the assistants wash her, drink enough water with her 24 different medications, etc. She is also incontinent which led to bladder infections and sores. Chronic bladder infections lead to mental confusion, which may have masked the Alzheimer's for a year or so. The care facilities in Bemidji have a health-care policy of not treating chronic bladder infections. When we asked why, we were told that it does "no good since the infections never go away." Under-paid workers in health-care facilities is a huge sidebar issue in this aging process. The people in upper management recieve 6 figure salaries while the workers in the trenches are paid minimum wage and are assigned so many clients to work with each day it is humanly impossible for them to meet the needs of their clientel. At each facility, my sister and I met with the administrators to discuss our concerns. We were told in every meeting that the facility met with the state minimum standards for the ratio of workers to patients. Complicating the entire issue of our mother is that she has always been very difficult relationally. She came into the world in 1925 in an at-home birth. She was born with a cleft palate. That fact colored her life totally. She is facially disfigured, she grew up with no front teeth and her side teeth came in backward. My dad told me he married her because he knew no one else would ever want her and he would never have to worry about her unfaithfulness. He never mentioned where his infidelities fit with that reasoning because he "was a man." My mother is incredibly intelligent. The doctor diagnosing her Alzheimer's said it took six in-depth conversations to uncover the dementia, which I suspect has been lurking in Mother's brain for ten to fifteen years. She went to college, taught school with a two year teaching degree from Bemidji State College. Met my dad through mutual friends, after three months he wanted to marry her. She said yes because she thought he was the only person who would ever ask her. When I was in the fourth grade she began teaching full time. She retired from the Bemidji School District as a Special Ed teacher after 40 years in the field. I am the oldest of six children and have never liked my mother, nor has she liked me. None of her children have ever liked her, but she gave us our moral core. She instilled a set of values within us, both personal and professional. Oddly enough, I am also a retired teacher. I retired in 2006, after teaching in the Red Lake School District for thirty years. My brother, George, worked for the Leech Lake Tribe as their Chief Financial Officer until Eli Hunt fired him. He now works for the Cass Lake School District as their Business Administrator. My brother, David, is a lost soul and sexual predator. He is the one whom my mother always tried to "help". He reciprocated by trying to take her house, her property, and her savings under the guise of taking care of her. My sister, Marilyn, is a Dental Technician and Accountant. She is mother's legal guardian and conservator, steps we legally undertook because of David. My brother, Tim, is a professional bassoonist working in the Music Dept. at St. Olaf College. My brother, Rocky, is an attorney working as a Crow Wing County prosecutor. In February, we decided that we could no longer have mother in health-care facilities. The expense and the care she recieved simply did not balance. My neice said she would like to care for mother full time but couldn't at that time because she had issues with her house. She thought she would need three months to add a room to her house for mother. I stepped up, since I was retired, and said I could care for mother for three months. My family and I began a journey in which I doubt I will ever embark again. The journey has lasted more than three months which has stretched my compassion, understanding, sympathy, joy, and energy very thin. I have put my relationship with my granddaughters on hold. They are nine and eleven. They live in Bloomington and, as grandparents, my husband and I were a huge piece of their lives. They have traveled "up north" to be with us, but on a limited basis. We would go down there but have not been able to do so frequently because no one, except my sister-in-law, will stay overnight with mother. Most relationships suffer because mother's care becomes primary. I would guess the deeper issue is the incontinence and her ability to be mobile. She can walk with a walker, but cannot get herself up from a chair to do the walking. She requires constant watching for that reason. She is also clinically depressed and has been taking anti-depressants for a very long time. A number of relationship issues are becoming more clear to me after being with her for this length of time. She does a "downward spiral" into some type of despair every five to six weeks. She becomes practically comatose; she won't walk, eat, or talk. She wants to just sit in a chair and die. My husband and I have dealt with five of these episodes which I can barely tolerate. They last around seven to ten days. We are in day five of the current one. It took me awhile to connect the behaviors with behaviors from her past. While we were growing up, the "spirals" weren't as long nor as debilitating. She is, and has been, very self-centered. She does not now, nor has she ever, inquired about anyone else's health or welfare. It has always been, and still is, difficult to converse with her because there is very little response on her part. She does not now, nor has she ever wanted to be part of any social network of friends or relatives. I attribute most of that to her cleft palate which resulted in horrendous teasing and ostrasization as she grew up. She walks with her head down, which I hadn't noticed as we were growing up. It has been very difficult to wash her on a daily basis because of her hidden face and the fact she is fearful of water. That feels like an Alzheimer's issue. She does not recognize foods, I generally have to tell her what she's eating. I've noticed if she still can't recognize a food, she won't eat it. She loved chocolate, doughnuts, coffee and oatmeal raisin cookies. She will not touch them now. I have moments of sorrow when I think of her difficult life where I just sob. Within the constraints of caring for her, I would like this last phase of her life to be worry and pain free. When she is having a better day she has said she feels "content." She has never used the word "happy" which I've asked her about. She seems to think that feeling might be connected to heaven. I asked her one evening when she was in her bed/recliner if she dreamed. She replied "yes, I do. I have had one dream in particular, I am running down a road very very fast, as fast as I can. I'm over here on the side watching me, there are tall trees, trees so tall they go right up into the sky, the blue sky, and I am running so fast."

I'm a retired high school chemistry teacher of some 35 year. At the age of 69 I decided to go to massage therapy school. I am now a licensed massage therapist. I spend my time as a massage therapist going to an Alzheimer facility twice a week. I was invited by a good friend who is a Neurologist/Neuropsychiatrist to give light massages to his patients in the hope that such compassionate touch would help their quality of life.

I have been doing this volunteer work for almost a year now and I am convinced that massage helps to alleviate some to the tension, anxiety, and stress that commonly fills an Alzheimer's patient's day. The nurses tell me that there is a noticable difference in the calmness of the patience on days I come as opposed to days when I do not go in.

The biggest surprise however is what has happened to me. I have received so much more from my dear Alzheimer friends than I could have ever imagined. They smile when they see me arrive and give me hugs and words of deep appreciation for what I do. I look forward to spending time with them each week. I have learned that I can never assume what they know or do not know, what they feel and do not feel. They love to sing, dance, march, exercise, eat snacks, take naps, and be read to. Of course a lot of cat-naps occur between these activities.

For my part I go around from one to the other as they are seated in wheelchairs, on sofas, or at the kitchen table and gently massage their necks, shoulders, arms and backs. This takes about 4-5 minutes per peson then I move on. I will repeat this 3-4 times each session. I also massage those who appear to be sleeping because experience has taught me that just because their eyes are closed does not mean they are asleep or unaware of what is going on around them.

While Alzheimer's disease is a progressive, incurable, terminal illness it is not "tragic" as it is so often described. There is nothing tragic about these loving, gentle people. "Tragedy" is in the mind of the observer, not in the heart of the one afflicted. Once one takes the time to accept them just as they are, without expectations, and treats them with all the dignity due to any nonafflicted person, then a bond of deep respect and love will follow.

Richard Sullivan
Tulsa, OK
July 10,2008

My father, Peter Lauck, started slipping away from us in small ways. The first startling hint for me was when he woke from a nap at 4 in the afternoon and hurried to the kitchen to get breakfast on the table. Quickly when I explained what time of day it really was, his mind cleared. But inch by inch more of the man he was to my mother, my sisters and I, and all who loved him fell away. For several years my mother lovingly cared for him and I was never quite sure how much he understood of what he was losing. I know he searched the Bible and read it faithfully every day until he no longer could read and understand it.
The summer of 1999, just a few months before he had to go to a nursing home facility, he looked at me one day and said "I used to be able to carry on conversations." Of all he said, that probably broke my heart the most. Even as the disease took its toll, humor and bits of memory brought in sunny moments. He tried to talk the director of the nursing home wing into moving into his and Mom's home. When she said she was married, he assured her there would be room enough for her husband too. He was trying to figure out a way to be home again. One day as Mom visited him and couldn't understand what he was saying, she repeatedly responded with "I don't know." Finally, Dad asked her, clearly and deliberately, "Don't you know anything?" and then they both just laughed. Five months before he died, my sister from California visited and Mom warned her that Dad may not know her, but when she walked into his room, he beamed and said her name, "Esther!"
What I learned is that memory and personality are not forever, but love and humanity are. When you truly love people you love them for who they were and who they have become as they journey out of life. And you know, as all of us who knew and loved Peter Lauck know, that their life made a difference all the way to their last breath. He died on April 3, 2001 at the age of 91, but the life he lived, how he loved our mother and how he fathered my sisters and I made a huge difference, not just for each of us, but for others' lives our lives have touched. His living out of his faith lives on--not even Alzheimer's could take that away.

My father died of pneumonia at age 95. His brain had been dying for several years before that, but his spirit and body remained amazingly strong. When he was 87 he was living in South Dakota, but relatives who once lived in his town had moved. When the caretakers at his assisted-living facility complained that he was requiring too much care, I decided to move him back to his home state, Minnesota. As we drove along, it was obvious that he didn’t know me, but he was very cooperative in making the trip. My nephew accompanied us, and at a rest stop, Dad confided to me with amusement, “He calls me Grandpa.”

I placed him in a nursing home not far from my house. As time went by, I learned about Alzheimer’s disease from Dad's doctor and by watching my dad and other residents on his floor. I was relieved that Dad didn’t seem to be unhappy or anxious. As a teacher I was fascinated that he could still read, although he was not getting any meaning from what he read. Also, he seemed to have a good memory of how to converse in a pleasant way about everyday things. He joked sometimes. I remember when I praised him that he had quit smoking a few years back. I asked, “Did you quit cold turkey?” He replied, “Yah, I quit that, too.” He wasn’t really trying to make a joke then, but he laughed with me anyway. I was grateful that he was in a nursing home where the caretakers were so kind. I think they really liked my dad. He took his exercise up and down the halls on his walker, said hello to all the ladies, participated in the activities such as games and singing, and enjoyed mealtimes with the others.

I wondered how it would feel to have no memory of your life–how would it feel just to live.
It seemed to me that he was happier than I remembered him in the days when he was raising me and my two siblings—often alone--when my mother was hospitalized. Now in his old age he was living just in the present moment. He couldn't think of the past or the future. I left work early one day when the nursing home called to say that he was dying. The nurses gave comfort measures as they had promised and I hoped that he felt comfort through my hands and face. After he died, I did a lot of reading about Alzheimer’s disease and I felt regret that I was not around to give him comfort in the early days of his disease, when he must have known that he was losing his mind. He did not discuss this with anyone of our family that I know of. Although we knew that he was getting forgetful, we didn’t know how devastating it was to become. I learned recently that he did say to my brother, “I think I am going into my second childhood.”
A quiet man, he apparently just accepted it and bore it alone. At his funeral I spoke of how grateful I was that in the last few years he knew how to live in the present moment. Even if you lose your mind, life is still precious. This old Inuit poem seemed appropriate:

I think over my adventures, my fears
The small ones that seemed so big
For all the vital things I had to get and reach
And yet
There is only one great thing
The only thing
To live to see the Great Day that dawns
And the light that fills the world

Do you really mean to include only Alzheimers on this program? Are you intending to leave out stories about the loss of memory that accompanies dementia? Your description sounds like you are describing both, but your title and invitation don't.
I have not needed to experience the heartache of the personality change that often accompanies Alzheimers, but I have had to come to terms with my mother's gradual loss of cognitive abilities and her loss of huge chunks of her memory. Now this avid reader reads picture books, and I need to find ways to calm her when she doesn't know where she is and she knows my [deceased] father is worried because he can't find her. These are typical of dementia, which for my mother is caused by a continuing series of tiny strokes.
Please consider the question -- if you decide to limit it to Alzheimers, be sure it's because of symptoms/problems that differentiate the two. If you are focusing on the memory loss and the loss of cognitive abilities, then please include dementia as well.

Marcelyn Smale

I'm a Religious Studies Professor, and my mom lived with my husband, children, and me through earliest through late stages of Alzheimers, the last 6 years in a nursing home (where I got to know a number of her Alzheimer's compatriots on the Alzheimer's floor.) I have written about that experience; the article has been on-line for a number of years in Cross-Currents Magazine: "Intimations of the Great Unlearning: Interreligious Spirituality and the Demise of Consciousness Which is Alzheimer's." While I grew up in the Catholic tradition, when I became a religious studies teacher, I was always reading works of religious insight across religions (Christian, Islamic, Buddhist, etc.) at the same time I was seeing and learning about life, consciousness, and dying from my mom's decline of faculties with alzheimer's. Each of these experiences affected the other. Particular books helped me to think of their application to attitudes toward caretaking, memory loss, our families' responses to alzheimer's patients, while at the same time, particular characteristics of the alzheimer's process 'forced' me to think about aspects of religious wisdom I had encountered in my studies. So my experience of linking religious wisdom and Alzheimer's disease and caretaking was, for me, a great gift and help in the day to day living and working with Alzheimer's. (I get about a letter a month from someone whose parent(s) have Alzheimer's, who resonate with the piece, and say it has helped them very much, which makes me happy, since I did not write the piece particulary for academics! Krista Tippett interviewed me on this piece a few years ago, but I was just leaving for several months teaching in Indonesia, and I'm not sure what came of the interview.) Thanks, Gisela Webb, Professor of Religious Studies, Seton Hall University

My mother's greatest fear as she aged was dementia; she would have more gladly died young than suffer the fate of losing mental capacity. She was a fiery and friendly soul who overcame many changes and limitations in her life. She moved from her place of birth to a place with no extended family when she was young. She lived her teenage years in a two room house built from ammunition boxes culled from her father's defunct Army Surplus Store. She raised two kids by herself until the oldest was 14. She went to work to cast off the "commodities" which were the equivalent of "wic" subsidies. She lived her second chance life when she met her 3rd husband and gave birth to a daughter that was 25 years my junior.

My Grandma was a tiny elflike lady wise and childlike, caring and self contained, proud and humble. In her closet I found a size 5 1/2 pair of low heed shoes with a ballet toe, and I was always sure were magic.

Together these two formed the rock of my salvation all my life. They were each and together all the right ways to act and think; all the best of humanity and strength of character.

My mother and her older sister cared for their mother as she suffered the slow unreasonable degradation of who she was and had been. I missed a lot of the process and my mother didn't talk much about it. My grandma had to go to a nursing home when she became convinced that she needed to leave and go home at various times that became dangerous for her. It was at that time that she slipped away very quickly. I remember visiting her at the hospital at one point; she was unrecognizable. She seemed to flicker in and out of her mind, her consciousness, and this world. I was long haunted by her question to me then. She asked me in halting barely audible words "Why _(something)_?", but I was never able to hear or figure out why what. Why don't you come and see me more; why can't I make sense of this, why can't anyone understand me when I'm making perfect sense inside (like a person waking from a dream), why do you seem afraid of me. I'll never know but at almost 30 years old I sobbed long hours at the loss and release of it when she passed away.

So years later my mother confessed that was her deepest concern and fear to not have to suffer the loss in that way and not visit that on her children. She passed away of cancer that she fought for some ten years. Unlike the seeming sense that someone with Alzheimer's seems to be flickering in and out, to busy on the other side to want to stay; my mother seemed to leave fighting at every turn, not willing to leave but bodily unable to stay.

Sometime ago my step mother called to tell me my father has Alzheimer's; added to his long years of various illnesses that included diabetes. This really stirred up a lot of feelings of hopelessness and dread. This means I have it on both sides of the family. Growing up, I didn't know my father. Since reuniting with him, I've come to realize I take after him; my looks, my physical characteristics, a mash-up of his white hair and my mother's salt and pepper. So this news was pretty horrifying. We were able to visit him recently and he seems to be doing pretty well. He's living in managed care, but with a lot of family involvement.

For my part, I'm am not growing old very gracefully. In a world where everyone who counts seems to be 20, 52 years old seems to make no sense. I fear my body, I catalog my aches, pains, and miss-speaks/remembers. I search the internet for conventional and unconventional health breakthroughs. I watch my attitude, try to stay positive, and don't cook on aluminum pans. I don't have insurance (for many years now, not by choice but by neo-political climate) and I don't see doctors. I watched my mother in law with rheumatoid arthritis and fibromyalgia try to find solutions only to be told, "You're just getting old, this is just a sign of age, you're just going to have to deal with it."

In the long run I guess it's those who are left behind that suffer the most. My greatest fear then is not being who I could or should be for those I'll leave behind.

I have written the story of my mother's Alzheimer journey in poetic form in a book called "Conversations at the Nursing Home: A Mother, A Daughter and Alzheimer's." The book contains 70 conversations with my mother at Helen Porter Rehab in Middlebury, VT during the last 14 months of her life when she was suffering from Alzheimer's. The conversations are more her monologues and offer information on the mind of an Alzheimer's person--funny, poignant and wise.
Also, in the book, are my poems about her,her life and our relationship. One can see how I was able to transform from a difficult relationship with her to a loving one in which I was happy to be her caretaker. My own spiritual growth was of great help in this endeavor. I hope it offers inspiration to others who find themselves in a similar situation.
Although my mother remained verbal to the end, I am a great believer in "silent communication." That is, offering one's presence to a non-verbal Alzheimer's patient is equally as important. I believe there is a level, beyond time, in which we communicate our love. And that no matter what the condition of our loved one, they receive it on a soul level.
As a painter I also believe that any form of creativity with an Alzheimer's person, where appropriate, is a help, allowing them to raise self-esteem, stop obsessing about their condition for awhile, and communicate feelings on another level.
My own mother was involved with watercolor painting in a Memories Project at her residence, but,unfortunately, lasted only three sessions because she insisted she had to have artistic ability to go forward. I have her three paintings which I love dearly.
So I think Alzheimer's is one more challenge we, as humans, interface with, and it can be accomplished by opening to suffering, feelings, vulnerability and change. And it can be done with grace, compassion for self and others,and love as part of the tapestry of life. The community(staff)at Helen Porter helped me to accomplish my goals in this respect.
My greatest regret is that I didn't realize this sooner so that I could have acted upon it earlier on in my relationship with my mother.
I have a website which furnishes information about my book, photos of my family members and my paintings. It is: www.deannashapiro.net.
I would love to contribute any of my experience to your program if it fits with your format.
Thank you for your inspiring program and your book, "Speaking of Faith."

My father-in-law was diagnosed with Alzheimer's disease in 2002. His wife of 64 years took care of him in their home with no outside help other than their daughter and son-in-law until last April, when he was moved into a memory unit. Although his agitation and sleeplessness are better contained in a facility, the staff can't stop the progression of the disease.
I don't think I've ever seen anything so heartbreaking. I think to myself "Is he alive or is he really dead, if his brain is so deteriorated that he doesn't know who he is, let alone his family?"

I have always loved and admired my in-laws. I don't think I have ever witnessed such love and appreciation for each other as I have observed watching them these last 6 years, even though it hasn't been stated in words. It's been like the famous saying 'Love is like the wind, You can't see it but you can feel it.' I worry about my husband, and how we will manage if and when he contracts this awful disease. He had a heart attack a few years ago from which he survived with the help of a beautiful new stent from the land of Mickey Mouse. (He was in Orlando on business.)
Sometimes I think to myself "Would a heart attack be a better way to die, even if in his 50's and completely by surprise?" My thoughts are so dark and angry I can barely stand myself. So, yes, this experience has profoundly changed my thinking on many levels.

Hopefully it's ok if I share with you an essay I wrote about spending the afternoon with him last October. I titled it SKY TO MY DAYS because that's how this Alzheimer's disease worry-journey reveals itself to me.

SKY TO MY DAYS
04/02/08

We were sitting on lawn chairs in their driveway, huddled close to the garage doors in case he decided to wander. We used to sit on the little patio outside the long family room, but because he's been banging on the doors and windows trying to get out (to 'go home' he says with panic in his voice) all the windows and doors have new locks that are kept permanently locked.
So I carried, maybe half dragged, the little greenish-black wrought iron chairs from the patio, and sort of set up a new intimate seating area there on the driveway, close to the house for safety and looking north to my home in Minnesota some 1100 miles away. It must have seemed so good to get out in the fresh air for a man who'd been very active the first 85 years of his life!! He settled right down in his chair and said "Look at how blue and infinite the sky is today!" I was amazed, since his Alzheimer's disease had so destroyed his brain that he didn't always remember who he was or where he was, let alone the sky or me.
We sat there quietly, the two of us, just appreciating the blue of the sky. The temperature of the air was in the 60's with a slight breeze. It was a beautiful October day in northern Alabama. The leaves on their oak tree to the left of the driveway were deep russet brown and rustling in the breeze. Sometimes they were so loud he would turn to the left and observe them carefully. Then he'd comment on needing to trim the oak tree on the left, about a third of the way up, "Do you see which branch I mean?" When I assured him I did, he became quiet again until the next time the wind blew through the leaves. Then we'd have exactly the same conversation again. Life begins anew every 3 or 5 minutes if you have Alzheimer's. Sometimes it's beautiful, like the light of a very sunny and cloudless October morning sky. It was our sky, that morning.
After awhile the cold seemed to penetrate through the wrought iron into our backs and bottoms, so I got the cushions and a brown lap blanket from inside the garage. My feet were cold too, even though I had on my knee socks and Rockports. It was the middle of the morning, and there wasn't any foot or car traffic. Even the golf course a block away was silent. There weren't any of those weird little explosion sounds that often come from the rocket testing at nearby Redstone Arsenal either, just stillness. Inside, I was remembering the words and music to the old Simon and Garfunkel song "Hello darkness my old friend, I've come to talk to you again..." When it's so quiet and my heart is full to overflowing, my brain thinks in music. Although the outward world was sunny and silent, my inner world was very dark in its silence. I don't know whether that's good or bad, but my heart-brain connection has expressed itself internally in music for a very long time, ever since I can remember.
The air smelled bright also. There weren't any odors from cars or gardening or cooking, or bonfires of burning leaves. He used to do that, back in New York and Vermont, but most recently he'd mainly just kept the lawn raked as well as picked up. When we were visiting last Christmas of 2006 the two of us spent an afternoon picking up those pesky sweet gum balls and their tree branches. It was good to be outside breathing in the fresh air and moving our limbs a little, together. It reminded me quietly of all the times he'd allowed me into his life and space so completely.
Inside again, I was thinking perhaps what Ruth from the Bible may have been thinking when she spoke to Naomi:"Entreat me not to leave you or to return from following you; for where you go I will go, and where you lodge I will lodge; your people shall be my people, and your God my God; where you die I will die, and there will I be buried. May the Lord do so to me and more also if even death parts me from you." Ruth, Chapter 1, pp 16-18.
I have embraced this family, as they have embraced me. And now I need to figure out how to let them go.
Today raking was more physical activity than his body could do any more. So, we just sat quietly with our own thoughts, studying the sky.

Eventually, he asked me who I was. I replied that I was his daughter-in-law, and that I'd been married to his son for about 40 years. He didn't seem to remember that he had a son, let alone his name or what he looked like. I just sat there, thinking to myself, "Should I remind him who he is? How would I describe back to him who he is and how much I love him? Would he understand? Would the passion of my words frighten him? Or, is that part of his brain still functioning, that part that still recognizes the 'blue true dream of sky: and for everything which is natural which is infinite which is yes...?" (My heart and brain firing back to e.e.cummings and "i thank You God for most this amazing day!"
After another little while, maybe a century, he asked me if I was his friend?! I beamed, inside and out, and said back to him "Oh yes, we're old friends! Isn't that great?"
There we were, two old friends, sitting under our own canopy of blue true infinite October sky.

And, lastly, my favorite quote which helps keep me going through all this:
"I would like to beg you, dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far into the future, you will gradually, without even noticing it, live your way into the answer."
Rainer Maria Rilke, 1903, LETTERS TO A YOUNG POET

Thank you for doing this. I hope the process of talking about it is helpful... to all of us!!!

My grandfather suffered from dementia towards the end of his life. While politically liberal, he was a very traditional man. We very close, so it saddened me that he was angry about my approaching marriage. At my grandmother's request, we took a walk together, to talk this over. When we met someone he knew, he said gruffly, "this is Carol." When I asked why he was angry,he told me it was because I had not asked his permission to marry my husband to be. He agreed that he felt disrespected. I assured him that, while it was no longer to ask permission to marr, I still respected him. To the next person we met, he said, "this is my grand-daughter." Then, he told me that if he went back to his home-town, a shtetl, in the Ukraine, the people would not believe
he was the same person. He was now a retired judge. I said to him, "Grandpa. you are the same person. Your memory is not the same, but you have the same personality."

When a loved one has dementia, your love remains, and it is possible to "translate,understand, and respond to what they are saying.

To me, the scariest part of “old old” age is the thought of losing my memory. That seems like a kind of death in life - and it also seems nearly inevitable if I live to be really old. Yet even Alzheimer’s can be embraced and welcomed. Here are some examples that really surprised me.
1. My mother-in-law had a lifelong habit of remembering and dwelling on all the bad things that had ever happened to her. When she lost her memory, her experience of life became much sweeter and more peaceful.
2. My Aunt Dorothy couldn’t sing well and so she’d always been discouraged from singing - but in the Alzheimer’s facility, no-one cared if she hit the wrong notes. So for the first time she began to sing lustily and joyously whenever the opportunity arose.
3. In Deborah Hoffmann’s documentary “Complaints of a Dutiful Daughter,” Hoffman’s mother had been rejecting Hoffman’s lesbian partner for years. Then, after the mother lost her memory, she developed a really warm relationship with the partner. She had just forgotten her judgments about being gay, so now she was able to respond to the partner’s warmth and caring.
Fourth example: My dental hygienist told me of a woman who had never traveled very far but who had loved to go to the movies to see travelogues. In her dotage, she believed she had really traveled to all those places in the travelogues – and not only that, that she had been accompanied by a romantic man.
5. An article in the New York Times – and also the movie and story “Away from Her” - showed the possibility of falling in love while demented. The article also spoke of – and the movie showed – that older people who are not demented may respond to a partner falling in love with someone else with wisdom, perspective and generosity that would be rare in a young person. An example: Sandra Day O’Connor.
6. I participated as a volunteer in “Time Slips” at the North Oakland Senior Center and saw a group of demented elders engage in imaginative responses (“story-telling”) in response to stimulating photographs. Time Slips is a program that is being used successfully all over the country.
Now I'm not so sure that Alzheimer's is the worst thing that could happen to me.

My whole life has changed through this process. At 49 I've gotten divorced after 21 years, decided to change careers after 21 years and am in the process of writing a book on my experience with Alzheimer's. The book is called "Alzheimer's Come Play in my Playground" It is about the Powerful Last Lessons alzheimers is here to teach the world - Acceptance, Forgiveness, Unconditional Love and Letting go, which stands for PLLAFULL.

I have been compelled to write the book after watching so many family and friends struggle with how to interact with my Mother Dorothy who is still living and in a nursing home. My Mother has been diagnosed with Alzheimer's since about 1996. She turned 80 in January but has had memory problems since her early fifities. She currently lives in a nursing home and has been there since 2001. My Mom and her disease have taught me so many simple techniques to connect with the patients and find balance when dealing with crippling disease which affects so many.

Here is a short story which will be in my book. This sotry is called "The Sand Trap"

I grabbed my five iron from my golf bag, turned, and walked towards my ball. The smell of fresh cut grass filled my nostrils. The stark contrast of the deep, rich, green grass, nestled up against the bleached white sand, looked beautiful, yet nothing compared to what my eyes saw next.
My mother, a large woman in her sixties, with short, salt and pepper curly hair, lay on her belly, in the sand trap. Her big arms stretched over her head. Each finger towered to the knuckles with diamond rings, one on top of the other, ending in a tip, of perfectly applied red polish. Her cupped hands, trapped the sand as she pulled her arms down and around, in perfect breaststroke form.
I watched in amazement. The sand swooshed loudly in my ears. I could hear each grain of sand, scraping against one another as she swam. Her head turned sideways, as she took in a breath of air, and then rotated her head back into the sand, slightly raised, to adjust for the texture. The confidence and calmness on my mother’s face, shined like a beacon of light, on a pitch black summer evening. She swam in the warm sand to safety. My mind flashed back about forty years, remembering my mother had always been a great swimmer, and I saw that old Lifeguard was still strong and intact.
My God, how are we going to get her out of there? She really thinks she is in the water. I thought to myself. Sadness hit me for a brief moment, and then the humor of the situation touched my heart like no other time in my life. I smiled and laughed as I watched her in amazement. My mother’s child-like state of mind was rescuing her. She felt safe and in control in this imagined place, in the water. The faith, belief, and power she appeared to hold in this moment was incredible. “Mom, can I help you up?” I asked, as I continued to watch. She abruptly stopped swimming. Her face looked confused as I brought her back to reality. We were golfing. She had fallen in a sand trap. “Are you ok? Let me help you up,” I said in a soft voice accompanied by a warm, friendly, smile. She seemed to connect with both immediately, and smiled back at me. “Ok, Lori. That would be good.” Then she burst into laughter, not just a giggle, but a hard solid belly laugh. Her eyes were joyful yet glistened with tears, and, as my mother lay on her stomach in the bleached grains of sand, she seemed to realize for just a second how comical life can be.

If you choice to use the story can you just let me know. I would be glad to give you some photos of my Mother if you like I just don't have access to them at the moment.

My mother's Alzheimer's taught me about honesty, forgiveness, and living in the moment.
For much of her life, my mother had presented herself as a cold person, very concerned with appearance and protocol. Her disease stripped away all pretension - how can you be dishonest with the daughter bathing you? What emerged was a sweet and innocent trust that we had never seen before; such true spirit shining through was pure gift to her daughters. On her deathbed she shared with us (not knowing who we were, or perhaps even that we were there) a profound and painful secret that she had kept hidden away all her life. It explained so much, and grace flooded the room - she was forgiven all. The moment taught me that everyone carries pain that others are unaware of, and if we were all as transparent as Alzheimer's patients can be, without all the psychological defenses we erect to keep others away or wary, then the world would be transformed. My lasting lesson is that, given my family history, there is a good chance I will develop Alzheimer's. So I do not hope for grace and forgiveness in the future - everyone I meet knows I love them now.

We have heard it said that without our memories we don’t exist. I think our deep fear that the saying is true explains our dread of Alzheimer’s or of any form of dementia.
15 years ago my husband Bob Simpson, a UCC minister, was diagnosed with pre-senile dementia. Then, two years later, with “probable Alzheimer’s disease” - early onset because he was only 62. For many years he understood what was happening to him. He could speak openly about his fears and his losses. We even wrote a book together, Through the Wilderness of Alzheimer’s: A Guide in Two Voices. ( AugsburgFortress 1999).
His disease progressed slowly and I was able to keep him at home until 3 years ago. Now he lives in an institution that will never be familiar, totally dependent on a dedicated staff that will always be strangers to him; he has neither memory of his past nor concept of a future, no recognition of his visitors, no understanding of their speech and very few words with which to respond. But he is still here!
Bob used to describe himself as “growing down.” Indeed, he is now very much like a baby. He responds to feelings – relaxes in a friendly atmosphere, scowls and fidgets if people around him are anxious or distracted. He smiles at a cheerful voice. He reaches out to grasp a hand, holds tight to a finger, naps most of the day…
Each individual is affected differently by dementia, depending on the form of the disease and the way it attacks the brain. A sweet little old grandma may pinch and kick or a timid man swear like a drunken sailor and patients can become unrecognizable to their loved ones. But over and over in Bob’s facility, as the end stage approaches, I have seen negative behavior dissipate and personalities long-buried under layers of fear and confusion slowly begin to assert themselves. The mind and the body melt away and the soul comes shining through. It is as if these patients are shedding shame and guilt and all their acquired defenses of fight and flight. Now close to leaving the world, they are being reborn into the core of goodness with which they entered it.
Sometimes when Bob is alone in his room, I will hear him mumble “Thank you “ or “That is good” or “ I love …” I don’t know if he is talking to anyone but I delight in these moments as a new parent delights in glimpses of the baby’s personality.
Love changes over time, of course, in any friendship or parent-child relationship, in any long marriage. With dementia, roles are reversed. Children are asked to parent their parents and many can’t ( or won’t ) do it, but there are rewards for those who can. Recently, Bob’s nephew eulogized his mother who died a painful, lingering death of Parkinson’s and dementia. “It wasn’t easy, Mom,” he admitted. “But I wouldn’t have missed it for the world.” As caregivers we are challenged to grow, to give without reservation and without expecting to receive. We learn how to live totally in the moment, to be with our loved ones here and now. At last we have the opportunity to release them - with deep grief but without regret to say good-bye.
Like many spouses, I have had to learn to give up all patterns and expectations of an equal partnership and to love my husband as my child. To protect him, to be his advocate, to tell him in words he may not understand that he is safe, he is good, he is loved. When I sit with him and hold his hand, sing childish ditties or read familiar psalms, he seems to grow calm. And if I bring him peace it is because I remember the man he was, the husband who still exists, the spirit I can see and feel that he will be.
It is my privilege, and the role of all caregivers, to keep the memories alive. To tell the stories while our loved one is dying, as we will after the death. It is in our memories that they exist now. And in the memory of God.

P.S I am in the process of assembling an exhibit of 20 of my poems with 20 photographs of dementia patients by Laura Crosby. Opening in Oct., it is called "I'm Still Here!"

This is the first part of an essay I wrote about working at an adult day care. Most of our participants suffer from Alzheimer's disease. The third section of the essay also deals with a participant at our program. I'm sending only the opening section because I was worried the whole work may be to long. Anyway, I hope someone there finds this little story helpful.

Sincerely,
Michael Gore

TRANSFORMING GRACE:
Reflecting on Gratitude and Glory

Michael Gore

It is useless to try to make peace with ourselves by being pleased with everything we have done. In order to settle down in the quiet of our own being we must learn to be detached from the results of our own activity. We must withdraw ourselves, to some extent, from effects that are beyond our control and be content with the good will and the work that are the quiet expression of our inner life. We must be content to live without watching ourselves live, to work without expecting an immediate reward, to love without an instantaneous satisfaction, and to exist without any special recognition.
Thomas Merton

I.
Velma baked a cake. She brought it to the adult day care program she attended, and where I worked. It was not, of course, an ordinary kind of cake. At ninety-two, Velma proved to be incapable of baking anything resembling an ‘ordinary’ cake. Standing a little over five feet, she resembled a box, square and stout. Her legs, thick and chunky, were veined with finely filigreed scars, the result of multiple surgeries to remove skin cancers contracted (her family suspected) from years of working unprotected in cotton mills. A radiant smile creased her face into an endless tangle of wrinkles – a road map of the joys and sufferings of her long life. Slightly vain, she would promptly point out to visitors that her hair retained its natural wispy brown color (“I’m ninety-two years old and I ain’t never put nothing on my hair except shampoo.”) She loved to talk, loved to “keep busy,” loved her life and loved the Lord. She did not wear pants or tennis shoes because “my daddy told me that God doesn’t want a lady to go around dressed in men’s clothes and that God loves a lady who does his will.” And that, as the saying goes, was that.
She exuded a kind of delight that baffled and mystified me. Sitting out on the sun porch, Velma would suddenly, spontaneously burst into praise: “Look at how green them leaves are; and now just look at that pink color of them dogwood flowers. Look at that wind blowin’ them tree branches all over creation. We can’t never see the wind, we can only see its works, just like God’s good Spirit!” Her face glowing with an inner pleasure, creased and cracked like dried mud on an old country road she would burst into a psalm of admiration at the wondrous works of the Lord. “Those are the good works of our glorious and beautiful God. Noooobody can know or understand how or why he wants to make something such as that. All we can do is praise his beautiful name, the na-aaame of Jeeeeeesus, and thank him for giving us these things to enjoy. The glory is God’s alone, praise to his name. Amen.” These unannounced outbursts drove me crazy. I would catch myself thinking, “What does she know? She did not even graduate from high school. If I tried to sit and talk theology with her, she would have no idea what I was talking about.” Only much later did I recognize that I envied her simplicity, her immediate apprehension of the Presence of God in ordinary things.
So Velma baked a cake and brought it to the program to share with the rest of us. The cake, an old-fashioned homemade chocolate pound cake topped with thick, creamy rich chocolate frosting, was a mouth-watering ambrosial delight. Never had I eaten such a cake in my life. As the other participants in the program sat around the dining room table eating and exclaiming over the cake, I quickly finished up my piece (wondering if perhaps I could sneak another without being seen) and began to clear the table of plates, cups and napkins. As I passed Velma, I knelt next to her chair. Giving her a tight hug I declared, “Velma, I always thought you were a friend. But now, after eating some of your cake, I think you’re a really good friend.” She laughed and blushed in her pleasure. She glanced over at me and said, “Well, I just like to do things that make people happy and I know my cakes always make people happy. I’m glad you liked it. I just thank the Good Lord that I can still bake.”
Nothing in the moment demanded that I hug her. I could simply have told her I enjoyed the cake and let it go. But I did not. I stopped to acknowledge, to pay a tribute to, the gift she had given to us. That recognition of her giving, and the clear and abundant joy she received through that approval, expressed a small thing that did not need to happen. As I hugged Velma and extolled the virtues of her fabulous cake, I allowed, or was allowed through grace, to let a small thing be enough. Startlingly, the elegant beauty and grace of the small thing, that ordinary moment, erupted within me. The ongoing effort of my spiritual journey has consisted, I believe, in just this: to intensify an inner awareness of the Divine presence, the presence of Christ, in such small moments and to really know, through an awareness of God’s Spirit, that those small moments of caring can be enough; may well be all that is asked of me.
A few days later, during a small discussion group at church, I told the story of Velma and her cake. The discussion centered around the nature of our call and moments in which we believed we had experienced our calling. As I told the story a startling remark popped into my head. Twenty-five years had gone by since first I read it in a book, back when I started to attend church again and began to study Christian spirituality. The quote in question, as best I could recall it, went as follows: the reason a person embarked upon the monastic life was to disappear as an object of interest in the eyes of the world so as to become present to the world everywhere through the Spirit of Christ. I could not remember where I had read it, perhaps in one of the many Thomas Merton books I read during those early years.
Wherever I read it, the recollection of the remark jolted me awake. I remembered how it had set me afire and filled me with awe and a desire to worship and praise. When I first read those words they impelled me to consider how dimly I appreciated the astounding gift that God’s Spirit extended to me, to everyone. I held within my heart, through the redeeming power of the Spirit, the possibility of accommodating (enigmatically) the sorrowing weeping and broken-hearted world. Even though I remained hidden (unseen and unnoticed), through surrendering my self as a servant (a carrier of that brokenness) I could alleviate (in some small way) a portion of that suffering. My heart burst. The knowledge terrified and astounded: that blessing, integrity, virtue, unity, completion and consummation (my self concealed – buried and raised to new life – in Christ) could be rendered wholly through attending to the little, the inconsequential and trivial moment, to whomever and whatever I happened upon, befuddled me. I prayed and yearned for this gift of service. Partly, I know now, because the big picture, the grand vision and heroic act, scared me witless. I figured that this small way, this way of serving God without being of particular notice to anyone else, might be something I was capable of pulling off. And if I did screw up from time to time, which I knew I would, at least it would not be too noticeable. Nonetheless, the insight inspired; it breathed into me a desire to serve those no one else seemed to give particular attention. And so I started to do so. I began to work with the old, the frail memory-addled elderly shuffled off to nursing homes and frequently abandoned. And so the years quickened and the fire of that initial vision faded from my thoughts – until I met Velma.
As I pondered that long ago prayer a remark of St. Mark the Ascetic came to mind:

When you are moved by the recollection of all [the] blessings which you have received through God’s loving goodness, your heart will be spontaneously wounded with longing and love through this recollection or, rather, with the help of divine grace.... (Philokalia, p. 152).

The wounding of Divine love; the yearning heart hungering for God’s love to fill it with goodness and joy. My long ago prayer to cease being of interest to the world ( as if I had ever been) was, in reality, a prayer to be of service to the God Who had lifted me from despair and grief. I desired to give something to God in return in whatever manner I could, regardless how insignificant the offering. I doubted my ability to do much of anything. But I did know that, given the opportunity, I could offer practical care to those too frail to care for themselves. So, when I read that statement about the monk’s reason for becoming a monk I trusted that, in the narrow confines of a nursing home, I would find the broken wounded heart of Jesus and be able to minister to it in some simple way.
And now I appreciated that God had indeed honored that prayer of my youth. No matter that I had forgotten even making the prayer. The proof was in the pudding; or in this case Velma’s chocolate pound cake. No matter that I still remained far from fulfilling the fullness of my prayer. Much of the world’s joy and pain endures beyond my awareness or grasp. But no matter. I will never stand open to the world’s suffering and joy if I cannot be accepting and unobstructed to the place in which I find myself. And when I succeed, when I allow the richness and abundance of any given moment to reveal itself, I find imparted through that moment blessing upon blessing. As the full consequences of that long ago prayer washed over me, I felt a deep and abiding gratitude that God had prized a prayer made with such slight understanding.

I am a nurse. I find it fascinating now that I define myself in this way, but that fact is central to my story. One of my first jobs was as a Certified Geriatric Aide. I thought it was the best job in the world and I could hardly believe they would pay you money for doing this work. I was seventeen and full of all those things that fill your mind at that time, social and independent. My favorite patients were those elderly with dementia. So easy to love and so challenging to care for. As it has been spoken of a thousand times, the difficult part of the disease is for the families. Take my word for it, the paid caregivers find it rewarding every day. We are just meeting these people. We take them in and find such joy in the interaction. Primarily, the deterioration of mental capacity does not belong to us. We are not tied in any way to all of those memories that have become part of the family members' relationships with their loved ones. We can love them just the way they are.
Over the years, I cared for countless numbers of Alzheimer's and related disorder (ARD) patients. I went back to school and obtained my nursing degree, with every intention of advocating and influencing care for this population the rest of my life. I became an armchair expert, attending conferences, reading and studying. Yet when my grandmother started manifesting symptoms of the disease, I completely ignored it for two years. When I would call and speak to her on the phone, I would tell others and myself "wow, she's having a bad day". When my grandfather wanted to arrange a visit with me and asked questions about how far they would have to walk, I shrugged it off and actually thought he was losing cognitive ability. During this time, my grandmother's twin brother was diagnosed and when I was around him, I could clearly assess his condition. It was sad for me, but not heartbreaking. I was confident his immediate family could deal with the problem. I come from good people who are strong and brave.
I faced the truth that my grandmother actually had a terminal condition only after she wandered away from her apartment. My grandfather had been ill and was napping. He did not awaken when his wife opened the door and went looking for some unseen object. They lived on the 5th floor and by some miracle, she missed the stairway entrance and was found wandering about the corridor. At this point, the decision was made to place her in a long term care facility. Finally, there was realization.
Examination of my own rationalizations and feelings surrounding my grandmother's illness has been a touch point in my life ever since. I found SOF's question alone incredibly succinct. How has this disease changed the way I think about love, memory, personality and humanity? I believe with all my heart that a person's humanity lies primarily at that point where we are separated from that part of us that is a part of the "whole"- God- All That Is- Spirit- Soul- however it is that a person wishes to define it. We are human because of that division which makes it possible to become. I have seen graphically how the brain itself works in that unknowable process. As the person loses brain function, the physical functions become more stark and ugly. The division becomes more apparent and that it difficult to see. Yet we love them anyway.
In my own way, my familial love for my grandmother was entirely wrapped up in my memory of her and her personality before the disease. I avoided interaction with her in the nursing home, only visiting occasionally. I could only see glimpses of that personality for the first several months, dwindling to never. I see now that I became the stereotypical family member who simply doesn't want to face the contrast between that person that I had loved so, who had loved me so and this almost non-person. I still find the reaction amazing and illustrative of the human capacity for coping. I use the personal example in my work, teaching and explaining to others about responses to the disease.
Our love for each other is the ultimate expression of our humanity and is undeniably intertwined with memory and personality. Yet our humanity is made possible by Love. ARD is one example of how one's life can illustrate the concept for others. When I am counting my blessings and saying my 'thank-you's', I always include my grandmother. Her love for me and her loss of the ability to feel that love and express it filled my life.

My mother Anna, with a delightful sense of humor and loads of love raised eight children, and was diagnosed with Alzheimer's in her mid sixties. The progression of the disease is heartbreaking to watch but my mother was lovingly cared for in her own home by her family with 95% of her care provided by one dear sister.
Alzheimer's profoundly changed my thinking about memory and personality. I remember
a time when my mother was hospitalized for some physical problem and I rushed to the
hospital to see her. Upon entering her room, where she was surrounded by other daughters, she looked at me and said " There is my best friend". It was a bittersweet moment, since I then knew for certain that my mother no longer recognized me as her daughter but she still recognized a loving connection. That was an epiphany for me because although my mother was, in many ways, no longer the person we had all known because of the loss of her memory and ability to do most things for herself, her kind and caring soul was still very much present almost to the very end.
Because of my mother's Alzheimer's, I feel I appreciate moments much more and do less
worrying about things that are out of my control. My mother said that if there was one thing she would have done differently in her life it was to have more picnics. I
hold that advice dear and try to have lots of picnics or just live in a picnic like way-ready with food, family and friends together in a beautiful place.

My mother lived alone in another state, and was always a good listener, so it took us awhile to realize that she was having problems. Her dementia was caused by Parkinson's disease, not Alzheimers, but was just as debilitating.

When it became obvious that Mom couldn't live on her own anymore, we moved her in with us. We were so fortunate to have a daycare program nearby for adults with dementia, so I was able to keep working, with assistance from a local teenager who sweetly came in the afternoon to stay until I returned.

I think we were both fortunate, in that Mom didn't seem agitated or upset that she didn't remember things. If it bothered her, she never showed it. Maintaining most of the very lovable parts of her personality, she became very docile and even more agreeable than usual - more like a dear child than an adult.

My husband's job kept him away from home often during the week, and I remember those dinners when we would discuss what had happened during the day. My favorite memory is the time that Mom said she couldn't remember exactly what she had for lunch, but it was "purple, like spaghetti". We both laughed, because spaghetti isn't purple, but eventually realized that what she had eaten was eggplant parmesan - purple like spaghetti was a pretty good description!

She suffered not only from Parkinson's, but also TIAs, and eventually developed a catatonic problem, which meant 24 hour supervision and her doctor said she needed to go into a nursing home.

We would sit and "play cards" - usually she could concentrate until the cards were dealt. We would have a thimbleful of sherry in her favorite glasses, and I found that the intimacy of doing her nails - fingers and toes - was something we both enjoyed. For awhile, I'd read simple books, but that got boring for her. We would attend the Bingo games and the visits from the local churches and the boyscouts. When it snowed, I took her wheelchair outside on the porch and made snowballs for her to throw into the night.

Then my husband bought a portable keyboard, and I'd play and sing to her, the same songs she had played and sung to me when I was little. She really enjoyed that, as did the other residents. It's amazing how much better you play when you know your audience appreciates anything you do!

Our church had a program of home communion for shutins, and Mom was always included. In fact, before she lost her ability to speak, the last thing I remember hearing her say was the Lord's prayer. It really touched me to realize that since she had been praying that prayer for so many years, it was so deeply engrained in her mind that it wasn't lost to her. I keep that as a ray of hope in the thought that I might live long enough to develop dementia, that God would still be very real.

There were some funny moments. One Halloween I came to the nursing home dressed in a Frog suit and gave candy to the residents. When I got close to my mom, although I was wearing a full face mask, she said "I love your costume, Ginny". And another time, about a year after she started living there, my husband finally came to see her and she knew him by name right away.

One of the things I realized was the fact that people can be a blessing when they can't do much of anything. Because my Mom could still smile with her eyes, and because she was grateful for the ministrations of the nurses, you could see that he room was a place that they liked to be, a place of rest and gratitude. She gave everything she could, right up almost to the end.

About 8 years ago, I made one of my regular trips down to the parental home in South Carloina. Mom had been diagnosed with AD a couple of years previously and Dad was doing a good job keeping her at home. When I arrived, he had not been able to convince her to take a bath for a few days and I, helpful oldest child that I am, decided that I'd just get her into the tub.
For about 45 minutes I talked to her, reminded her of the joys of bathtime, tried to prised her clothes off and fill up the tub. I finally succeeded in sitting her down in the water, chattering at her in an attempt to divert her mind from what she'd refused earlier to do.
Kneeling at the side of the tub, soaping and rinsing, I realized that I was doing what she'd done for years with all of her four children...knelt by the tub soaping and rinsing, chattering and getting us clean.
Still stinging from the irony and poignancy of this turnabout and in full denial of the truth of this disease, I asked her, "Mom, do you remember doing this to your children?"
She turned to me and asked, "Who are my children?"

These days, she neither turns to me nor speaks. She eats, sleeps and breathes. I imagine that she knows that her husband and oldest son have died. I imagine that she knows when grandchildren and now, great-grandchildren visit. I imagine that she knows that I come to see her 2 or 3 times a week. But I have a lively imagination.

I’m not sure I’m going to answer your question. I married a man who was twice my age when we met. I was in my early 30s. I thought I’d considered all the potential challenges of an intergenerational marriage, but it never crossed my mind that his memory and mind could decline while his body continued robust and healthy.

We came to a point at which he, a former Presbyterian minister, civil rights and anti-war activist, was ready to retire, and I was ready to take a fellowship in the Washington DC area. It seemed like a perfect fit, only once we got there he didn’t engage with the local groups and his former colleagues who were in the area. I got more and more frustrated and disillusioned. We sought counseling and eventually medical memory testing. I (foolishly as it turned out) prayed for a diagnosis, saying something that amounted to – just give me a name and I’ll figure out how to handle it. So we were given a name—Mild Cognitive Impairment—that gave me nothing more than what I already knew: his memory and ability to learn new things was failing. No hint of how fast or how long a decline and nothing to do other take some barely effective medications. And adjust.

I keep thinking I’ve been placed in the remedial education class for spiritual development. Not able to grasp abstractions, a spiritual doubting Thomas, I am given concrete lessons in the esoteric truths, day after day: all we have is the present moment; release your expectations and attachments; pay attention to what is, not what you expect there to be. It is, after all, all you have.

I still haven't learned these lessons, learned how to hold onto love and grace in the hard moments, as I remember each time I burst into tears of frustration and hurt at something unexpected he does, while part of me knows I have reacted not to him, but to yet another clash between my illusions and reality. The man I have always known continues in some stripped down, luminous form. His humor remains, and within an ever shrinking circle of capacity I recognize the man I married.

Hi,

I'm 34 and have been a caregiver specializing in the care of people with Alzheimer's disease for 13 years. I presently have one private client, who is in an advanced stage of the disease. Bettee and I have been together for a year and three months. In the time I've worked with people with Alzheimer's I have made some dear friends, despite the cognitive differences between us-- funny, to become sincerely close to someone who is always slipping away from you. But the relationship is real because it's about something profoundly real: simple empathy, unconditional love, that recreates the dignified personhood of the person with AD. I converted to Islam 3 1/2 years ago and I would say that my perspective on what it means to me to be a caregiver, and what it means that there is such loss and grief in the world, has changed somewhat. Islam teaches that this world is a passing place, that in our time here we gratefully enjoy the good in life and at the same time do all we can for others, for the sake of God. Bettee is a strong Christian and we talk about God and prayer, though she doesn't remember now that I am of a different faith. I admire the way she prays, and that nothing is too big or too small for her to "talk to the Lord" about. As a Muslim and a caregiver I have come to believe two things about life: first, that the world is full of beautiful things to enjoy, but that real life, what we're really here for, happens when things suddenly seem to go wrong and we or our loved ones or even strangers need help. The second thing, which may seem paradoxical at first, is that all we can do for another person is to be present for them, and to listen from our hearts and to witness their experience. We can't solve another person's problem or change them or fix them-- this is obviously true of AD. We can merely listen and love and commend them to God and trust in His mercy and compassion and justice. I'm very grateful to have been placed in a position to do meaningful work and to deepen my faith and trust in God.

I thought there was something "wrong" with my Mother about 10 years ago, but since my parents lived 1500 miles away there wasn't much I could do and thought they were just getting old. When asked,her physician said she had "dementia." When I asked him, "what kind?" I was rebuffed over the phone, then rebuffed in his office where I had gone with my parents. On this occasion he kept us waiting in the office (not that unusual) but then he refused to see us at all and finally his staff told me a complete lie about how my father was acting in the office. Since I was actually there I knew this to be a complete fabrication and immediately told them to have my parents' records ready for pickup and I "fired" him. I later learned that this physician made a habit of "dumping" his Alzheimer's patients when they became difficult and unfortunately this kind of behavior from a physician in Florida is not actionable nor even worth reporting to the state. So much for his compassion.

Initially it wasn't too difficult to continue to communicate with my mother -- I just followed her metaphors. When the twin towers were attacked she spoke of them as those "big houses." One of the last times she was able to communicate with us she was looking out her nursing home window and saying something like, "Tee, tee, tee . . ." We eventually realized she was reading a letter on the name of the building across the street! To us it was as if she had become a genius.

My father was never the easiest man to get along with. At the time my Mom's disease was apparent, he himself had some dementia from hardening of the arteries, and grew furiouser and furiouser with my mother for things she could not help: buying things they didn't need, buying doubles and triples of things, not being able to cook or wash dishes, misplacing things, throwing things out. So much for his compassion. Fortunately, we persuaded them to give us a power of attorney before one or the other became incapacitated. The lawyer we used directed us to a care giver group who were able to oversee their care: hiring help as needed, keeping an eye on my Mom when my father was hospitalized. Still, trying to do this long distance was a real strain emotionally and physically for me. I was the only child without a full time job and made several trips a year back and forth to see them and was in constant contact by phone and email with the group that oversaw their care.

Alzheimer's is a disease that strips you of your ability to communicate, to do things for yourself and eventually to live your life. It's like watching the process of development running backwards. Often, personality will change, but for my Mom this wasn't the case. Even without language she was social and sunny and it absolutely killed me to know what was happening to her. The worst was on one occasion when my brother and I were going to visit and we heard someone sort of keening and crying and my brother said, "That's Mom." I didn't think so, but he was right. She wasn't in any obvious pain but she was just sitting and rocking and crying and did that for most of the afternoon we were there! We just couldn't reach her and there wasn't anything anyone could do for her.

I have tremendous admiration for the people who worked in the nursing home where she went and where she eventually passed away. They could not have been kinder. My mother was always clean and smelled of creams they put on her drying skin. For as many patients as possible they had programs and music etc. During the six years or so that we dealt with the disease, I developed compassion for my friends and family who shuddered when we spoke of nursing homes and refused to visit. I realized they were afraid and I felt sorry for them because I understood their fear. They were unable to face their own deaths seen in the reflection of those who were already sick. When I visited my parents I also used the time to reconnect with family that my parents had little to do with for reasons that at 90 have no importance anymore. I now talk to cousins I couldn't speak to when my parents were alive. It was something positive to come out of their illnesses but, hey, why didn't my parents do this for themselves? What was the point of their grudge holding?

My parents had different health problems but it was important for us to get them in the same nursing home and eventually we did. One of the most touching things that happened occurred shortly after we finally got them admitted there. My brother and I went to visit and were initially alarmed when we could not find them. Finally, after a short search, we did find them: they were asleep in their bed in a room where we hoped they could be together. They looked just as they had looked when I was a child and crawled into their bed on a weekend morning. It was the last time they slept together. This is the most exquisitely sad memory I have of them and the kind of love they had for each other. The loss of their ability to be kind to one another even as they clung to the remnant of their relationship was emblematic of what I saw in other relationships tested by dementia whether it was Alzheimer's or multi-infarct dementia or other kinds of mental loss. Love did not "save" them or us; it just made it more emotionally painful.

Terrible diseases like Alzheimer's are simply another opportunity to learn compassion -- no better nor worse than everyday life. You can increase the depth of your own personality and response to life, but I have found nothing I'd call enobling in either having this disease or having to deal with it in relatives. It is cruel to both. It is a waste of time and resources with nothing redeeming to show at the end. Should I think: "Wow I've become so much more compassionate?" How stupid is that? Everyone dies, but Alzheimer's patients die to the world long before they breathe their last, and while compassion is a noble emotion, I would happily have increased my compassion in other ways. As my father might say: "Your compassion and fifteen cents will get you a ride on the subway."

This experience hasn't changed the way I think about love or memory or personality: when the brain goes, so does everything you are or have been. I don't believe that suffering unnecessarily is enobling or redeeming, and I certainly don't think "God" has anything to do with it. I think that we in the United States like to talk up a storm about compassion and religion, but that's all it is for the most part. If we really cared as a society, we'd put more money into compassionate health care at the end of life instead of hospitalizations and procedures.

Human beings, like other creatures on this planet, must die of something. I find the urge to escape into God and religion common and understandable but not for me. Quick, painless deaths are what most of us desire -- and with good reason. We understand intuitively that lingering or painful deaths are trials of personhood and personality that have no point because in the end you die. Those who remain have little but memories -- often sad and touching. I utterly reject the notion of an afterlife and find it ridiculous. People need to learn how to live kind, compassionate lives here and now. If we all did that, life might be a whole lot better for everyone. The notion of an afterlife allows people to drain much of the exquisite tenderness right out of life in the here and now.

My grandfather was in his 70's by the time I was born. From an early age I was able to visit him and my grandmother at their small parsonage house in Lyndon Kansas. For me, he was the epitomy of a gentleman who always treated me with respect and gentle affection. By the time I was a teenager he had deteriorated and was living in an ungly brick wing of a hospital and I was not allowed to vist him regularly. After turning sixteen and getting a drivers' license, I prevailed upon my grandma to let me take her for a visit to him.

As we entered the small room, he was sitting on his bed facing the corner of a wall, counting the "cubits" a biblical measure, for some reason known only to him. My grandma indicated that we should wait for him to notice us. I was filled with a solomn curiosity. Yes, this was my grandpa, but he was lost somewhere in the cubits.

As he became aware of our presence he turned and stood up gazing serenly into my grandma's eyes. "I don't know who you are, , , but. .I have loved you for a long time". He reached out and took her hand so gently. For a moment the room was filled with their love. Then he turned back to the wall sat down and began to mutter to himself again. With tears in our eyes we slowly left the room.

In that moment, in that recognition of one soul for its beloved, I gained a sense of assurance about whatever my end in life would be. If I could find a love as deep as his for my grandma, I would never be alone.

I was able to find that love for my self in the person of my husband of 46 years. As we enter the later stages of our lives I know that rewgardless of what happens to either of our minds as we age, my soul will know its love for him and his for me. This was Alzheimers gift to me.

I work at a nursing home where a number of residents/friends have Alzheimers. I did not know any of these people before they entered the nursing home so I do not have personal experiences of knowing them before the disease took hold yet much is revealed by getting to know each person. I will concentrate on one friend in particular. I have known her for over a year now and "Mary" and I were connected immediately by her confused recognition of me as her "daughter". She now realizes that I am not her daughter but she immediately relates to me whenever she sees me and expresses her joy and love at our encounters along with surprise that she should run into me. Her face lights up with this recognition and is especially poingent since her recognitions are getting smaller and smaller. The love she shows, the loss of memory constantly evolving, the shifts in her behavior/responses, the depth of her humanity for others is present and changing daily. Fear, anxiety, love, forgiveness are what she lives with.

How have all of these encounters changed my way of thinking about love, memory, personality and humanity... It brings home to me daily that I don't know anything. There are mysteries being a human being in the Universe that will always remain mysteries and do not need to be understood, they need to be experienced. The changes this deisease evokes in the person is constant and offers loss and gain. It opens up much fear and also can give an opening up of love and compassion that Mary shows me and others in many different ways. She is the first person other residents will go to when they need to be heard with much patients and love. She will sit there endlessly listening intently helping her friend in need by generously giving herself to them. This has changed my thinking about love, personality and humanity and what it all means. There she sits listening, helping others and 5 minutes later she has no memory of the encounter. Does she need that memory? I don't know. Does the experience resonate in her? I don't know. What she does with others does resonate to all people around her filling the space with love and humanity. There are other times she fills the space with anger, fear, confusion, rage. Does she remember this? I don't know.

She is not the "person" she was a year ago, 5 years ago, 20 years ago and neither am I. My thinking has expanded since working in the nursing home to realizing how much people want to "Live" up until there Souls leave their bodies. Frequently this is not a place to stop (yet it can be this too) but a home for much living before crossing over. There is always love.

The day after my father died, I and my siblings put my mother in an Alzheimer's facility. At that time my mother was able to go bowling (a life-long passion), play cards and dominoes, and about once a month she and my father played the slots at the casino. She had no problems speaking and minimal problems getting her point across. She occasionally could not find the right word. At 89 she was very agile and enjoyed as active a life as my father could pursue.
In the three short months since, my mother has been put on very strong medication (zyprexa, demeron, namenda, aricept). She now sleeps most of the day, and when she is awake, cannot form a coherent sentence. She babbles constantly. She is unable to stand up straight and her balance is so poor now, she has to hold on to someone to walk. The medication has also affected her sight. She can't see the difference between shadow and object, which is also adding to her inability to walk (even inside).
There is no humane home for the elderly, who are unable to speak for themselves. The staff members do not have time to care adequately for the the elderly emotional and mental needs. They only have time to hand out medication and care for their hysical needs. I am desparately fighting my siblings in court to move my mother into a family member's home, but the entire court and medical systems, and nursing staff at the home are stacked against me. There is a lot of money to be had by running a home for the elderly. It is big business now that we are living longer.

My mother is 69 and has now spent the last two years living in the same nursing home where she worked as a nurse caring for people who were in the same condition she is now. My sister is frequently haunted by my mother's confession of never wanting to end up right where she is now. The only constellation is that she has no idea where she is today.

Currently, she has been given the diagnosis of Lewy Body Dementia (LBD). Last November we celebrated my parent’s 50th Wedding Anniversary.

When I think about “love” now I realize that there is a deeper love for an individual than I have ever known or realized before. That deeper love that I’m talking about is the love that I “see” my father has for my mother. For years now my mother has not been able to care or feed herself. She talks, but her words have no connection to anything or anyone and I couldn’t tell you the last time she ever recognized my siblings, my father or me. My father visits her daily and feeds her since she doesn’t eat unless she is feed. I don’t know how he does it or can stand it. I have realized that you must really “love” someone deeply in order to be able to watch him or her slowly leave you as he or she looses every memory of the long life you’ve have spent together as partners. I can only hope that some day that my children or I might find and experience that kind of “love” for another individual.

When I think about “memory” I realize that I need to be thankful everyday for anything and everything that I experienced that day. Maybe someday I start that daily “Thankful Journal” I never seem to remember to start.

There is still a personality left in my mother. This is something I hadn’t really thought about until now. When I last saw her she was in the nursing home’s dinning room for lunch. I stayed and feed what she was being severed for lunch. I had never feed her before or even imagined doing it even though my father continues to feed her regularly. It was a very slow and sad experience for me, but I am glad I stayed because this is when I realized that there was still a little of her own individuality still left in there somewhere. She touched my arm and commented on how warm I felt. Her hand rubbed my four-day unshaven beard. These were both simple gestures she had made before the disease had taken almost all of her that I knew. Those few seconds now seem to be a very special gift of a person I used to know when I was growing up and being a challenging, oldest child.

It doesn’t seem human at all to let someone continue to live that doesn’t have a very good quality of life left in front of him or her. It is more painful for my family than it is for my mother. She is at least happy, safe and free from harm. I wish these same things for my own children daily.

I’m ready to move on past the loss of my mother. But I realize there is a reason she is still here. She needs to show me how I can still learn how to love and care for someone more than I already know how to now.

Thanks mom.

The attached picture was taken in November 2007 on my parent's 50th Anniversary.

Present Moment, Wonderful Moment (written in 1990)
by Richard Brady

When I was growing up, my father had many things to teach me about things like honesty, loyalty, generosity, and thoroughness. Now, at age 79, he lives with Alzheimers disease in a nearby nursing home and helps me with new lessons I struggle to learn today.

My father recognizes little of the past and makes no plans for the future. Spending time with him only works to the extent that I am able to participate in the present moment. Relieved of the necessity and possibility of much conversation, I hold his hand, massage his neck, walk with him, and play with Shoshanna, my nearly four-year-old daughter. My father enjoys just watching, not needing to play himself.

With my father, I am no longer the person I have been in the past. "Who is Richard Brady?" my father asks. Sometimes I'm still his son, but often I'm simply the person he's with. Without expectations, he lets me be whoever that person is. I have a much harder time accepting him as he is. When my father is smiling and responsive, that's fine. But when he needs to nap through our visit or gets angry when accidently bumped into, I wrestle with my need for him to be awake and polite.

My father continually shows me how much of my relationship to the world is dependent on the past, my notion of home, for example. During his recent visit to our house, my father went out for a walk with me. Returning to our house, I said to him "Let's go in. This is my home." "No!" he replied, "I don't know the people who live here." Luckily Shoshanna saw us through the window, opened the door and invited us in. Always a new person to my father, she is also always "wonderful," a child whose invitation he would never refuse. Now when we return to my father's nursing home, I have learned not to tell him that this is his home. "Let's stop here," I say, "this looks like a nice place." "Yes," he says.

My father lets go of feelings as easily as he lets go of knowledge. Enjoying a visit with us one minute, he is uncomfortable and ready to leave the next. I must accept this just as I did his enjoyment. As I learn to be with my father however he is, I find that the difficult feelings are just as subject to change as the other feelings. When he objects, I stop insisting that we've walked enough, and moments later Father is ready to take the shortcut back. In the same vein, no matter how slowly I'm driving, Father wants me to slow down. Slowing down a bit permits him to attend to other things.

A few days after a recent visit to the nursing home, my wife, Elisabeth, told me that she wished I would sit and beam at her just as I had at my father. How much easier this is without interruptions from language, expectations, the past, and the future, I thought. "I'm leaning how," I said.

First things first: Krista, I so appreciate your program! As one 71 years old and in excellent health and strength, I'm concerned about living toooooo long! All medical research and journalism, however, seem to have the basic assumption that living indefinitely is a reasonable goal. I don't want to be a burden upon my loved ones or society. I sincerely hope that you and your many thoughtful cohorts will address humane termination possibilities in future programs.

NOW FOR MY STORY & ALZHEIMER'S
I had to face that love does not and cannot conquer all, that memory is imprecise and shifty, that personality is a day-to-day construct, and that one’s sense of humanity can be fleeting.

LOVE
My father, being diagnosed with premature onset Alzheimer’s disease, when I was 30 years old, led to my realization that I no longer loved my then husband (if I ever did as I married on the rebound), which eventually led to my divorce four years later. By that time, my father was too far gone to know of the termination of my marriage. After 28 years single again, I found someone much like my father. We now approach our ninth anniversary of unconditional love and fulfillment beyond all expectations.

Memory
As my father’s memory became distorted, I realized that all memories are selective and revisionist, even my own, despite being accused of having been an elephant in a previous life.

Personality
His personality was somewhat ciphered for me all my life, a mystery that I’ve had to accept along with the changes that Alzheimer’s wrought. I know he was good, caring, sought knowledge and excellence, and meant well, whatever limitations came later.

Humanity
It took a number of years, perhaps 20, for me to achieve the humility and understanding of the many trials and tribulations that are inherent in everyone’s life. I live in reverence and awe of people who eschew consumerist values and reach deeply within themselves to seek greater awareness of humanity’s common good.

Background
When I was in my 20s, a newlywed, my father, then in his late 40s, made inappropriate passes at both my brother’s young wife and me. To say the least, it was disturbing and we turned to my mother to bring him into line.

For several years we’d joked about his forgetfulness, calling him the proverbial “absent-minded professor.” (His career was in social welfare administration and later was a driving force behind disability determinations under social security. He served as director of the first bureau of disability determinations for the State of New York in the late 1950s-60s.)

I now recognize those behaviors as signs of early onset Alzheimer’s. By age 57 he’d become goofy in a number of ways and also walked with his feet widely spaced apart. We took him to Columbia-Presbyterian Neurological Institute for a week of tests. Everything pointed to Alzheimer’s (confirmed by autopsy at Vanderbilt University Medical Center after he died in 1973). He soon was forced to retire and ironically became eligible for disability benefits!

Thirty-five years later, I’ve not yet had to cope with this horrendous condition again on a close personal level. I do, however, listen to and encourage a number of friends who have a loved one in the throes of Alzheimer’s. Basically, I assure them that nothing is predictable, that each person manifests the disease in unique ways, and that acceptance, a willingness to “roll with the punches,” can go a long way in coping.

I also learned from my father that the way he left us was a gift. We witnessed the person we knew disappear. By the time we decided not to intervene with antibiotics when he developed an infection, we had already come to terms that he was gone, his actual death a welcome release and blessing. My brothers and I continue to celebrate him (and our mother who died in 2000) each day of our own lives. Now 64, 71 and 74 with faculties intact, we are especially grateful that at least early onset Alzheimer’s has passed us by.

When my son was 4 years old and in nursery school, I chaperoned a school trip to a local nursing home. While there, I noticed a piano in the far corner of the recreation room. I spoke to the activities director and offered to come back and bring some of the great, old, music that I had saved over the years, to entertain. The facility housed a variety of conditions and concerns, but among the wheelchairs, walkers, etc., I noticed one particularly good looking gentleman, who never stopped moving. He was tall and slim and trim and very mobile.

When I retunred to the nursing home, and sat at the piano to sing and play the old favorites, the same gentleman would continue his journey - until I began the introduction to "Let Me Call You Sweetheart." Once the first few bars were played, this man would suddenly come to the piano and stand directly at my side. He would then sing every word in a beautiful tenor voice, in perfect harmony. When the song was finished, he was once again on the move.

It happened every time I played the song, at each visit. I realized that through the music, I was making a connection. I was hooked. My son is now almost 26, and I am still entertaining at the same type of venues. I have come upon many people lost in Alzheimer's disease for which these musical gems, these old time favorites, offer a gentle, soothing comfort.

I have expanded my volunteer activities to include a very small business that I call "Sentimental Melodies." There is no question that I have found my niche in the entertainment industry. There is no question that this is something bigger and better than just me. I feel most fortunate to have the skill, talent and opportunity to pursue such a worthwhile endeavor.

My mother has Alzheimer's. When she first got sick, I was 2.5 hours' drive away and so was my sister, from the other direction. I have since moved much further away, and we've moved my mother so that now my sister does most of the heavy lifting in caring for her. I visit once a month and try to help her however I can, in addition to which I do all the administrative work (paying bills, etc.).

Some observations:
1. It's incredibly difficult to be a long-distance caregiver. Used to be that people didn't move far away, and a village was available to care for its elders. No longer. The interstate highway system has allowed families to fling themselves to the corners of the earth, and the assisted-living industry sprang up as a result. I believe we're very much the poorer for having lost this community commitment.

2. Assisted living is no substitute for community care, and it won't be able to keep up with the rise in Alzheimer's as the baby boom ages. A new housing/care model will take its place, although no one knows what that is yet. I predict it will be some variation of community co-housing, where the Alzheimer's patient lives at home, but home is part of a community that offers all the supportive services that Alzheimer's patients need. For this to happen, however, we're all going to need to settle down and be part of communities again, and we're a long way from that now. Still, if anything can come of the devastation that widespread Alzheimer's will bring, a return to community would be nice.

Larger question from these two observations: What does it mean to be part of a family or community in which someone has Alzheimer's? Is "warehousing" an Alzheimer's patient in an assisted-living facility a) selfish and not acceptable, b) acceptable but not ideal, or c) truly the best solution in some cases? How much should family members be asked to sacrifice of their own fulfillment in order to care for an Alzheimer's patient? Not a day goes by when I don't feel guilty for not abandoning my job and my life in order to care for my mother. And yet I know that a) from everything I've been told, I understand no parent would ever want that, and b) if I were to do that, once she were gone I'd have nothing to support me as I tried to re-enter "my" world in my late 50s. Does she know the difference? Should it matter because I know the difference? Whose interests should prevail? (I have no answer to these questions, but they vex me daily. If you answer them on your show, please let me know!)

More observations:
We moved my mother closer to my sister because she and my sister were always closer than she and I were, and while I'm single with no children my sister is married with three children, so asking her to travel to visit on any kind of regular basis is out of the question. That leaves her with most of the responsibility of day-to-day care, which she's good at but which is very hard on her. Not a day goes by when I don't feel awful for leaving my sister with this load, even though I know it's the best alternative we have available to us. My sister misses her mother terribly, and while she wants to see her, it's terribly hard on her to see her in her current condition. She's the one having trouble with the changing definition of the word "mother," and I wish I knew how to ease the load on her.

On the other hand, I'm very sanguine at the moment about my mother: before she got sick, she was "old Pat;" now she's "new Pat." It's like getting to know a completely new person, someone who used to have a 154 IQ but who now needs help dressing and bathing and with basic hygiene. I'm OK with all that as just part of the basic cycle of life, and I truly don't understand those who treat Alzheimer's like it's something to be embarrassed about. It just happens. I conducted a test the first Christmas my mother was too sick to do her own holiday cards: She was still living in the town she'd lived in for the previous 20 years, so I sent cards to all her friends in which I told them she had Alzheimer's, I gave them her new address, and I invited them to be in touch or visit while she could still remember who they were and could talk to them. I was hoping people would send notes or photos, make a call, stop by, whatever. Almost no one responded. It horrified me. How can we be so quick to abandon people that way?

And yet, even though all indications are my mother has quite a few healthy years left (well, healthy except for that little memory-loss thing), already I'm feeling kind of an exposed, vulnerable feeling at my back like I don't have her looking out for me any more. I don't know, but I'm imagining that's a foreshadowing of the feeling you get when you lose your second parent. I feel very naked sometimes.

I don't know how much of this rambling is useful to you, but feel free to be in touch if there's anything you want to talk about further. Thank you for exploring this topic, and if I could ask you one thing, it would be to please keep your focus wide enough to take into account the caregivers as well as the patients.

I lost my Father last October from complications associated with Alzheimer's Disease. He was 81 and it had been approximately 4 years since he was "officially" diagnosed. My wife and I are also older parents; our son David is now 5 years old.

I was stricken by the incredible irony of helping my 80 year old father go to the bathroom, button his clothing, and pull on his socks…at the exact same time I was helping my 5 year old son go to the bathroom, button his clothing, and pull on his socks. But my father and my son were headed in different directions. I cried about Dad while helping my son, and I cried about my son while helping my Dad. Often the happy tears and the sad tears got confused. I didn’t need to help my father with his buttons in the final weeks of his life, because he could only wear pullovers. I don't need to help my son anymore with buttons…because he's an expert now. Sometimes I wish I could still help them both.

This timing of my father's regression coinciding with my son's development was for me an awesome window into the concept of "circle of life." While I do not participate in any organized religion, the spiritual significance of this coincidence was not lost.

Having been a long term care insurance specialist for many years, I didn't really become experienced until I started caring for my Mom who developed Alzheimers. The insurance is helping pay for a full time care giver. Intervention Associates wrote this story about us in their newsletter. I have also enclosed a link of a picture of me and my Mom at an event of the Ambler Runner's Club last Fall.

Sincerely,
Ross Schriftman

http://www.aarclub.com/news/wine&cheese2007/w&c2007/fv11.htm

A Son and a Home Health Aide
Together Making a Difference

This is a story about a loving son and a caring home health aide who are working together to make sure that the quality of life of his aging mother with Alzheimer’s disease is maintained.

Shirley Schriftman may not realize just how amazing her son, Ross, and her home health aide, Nora Caine, really are, but anyone who sees their interactions knows immediately. Ross had hired other home health aides in the past, but his mother resisted letting any of them help her with her personal care; she insisted that Ross assist her. It wasn’t until Nora came into their lives that Mrs. Schriftman relented.

Why did Nora succeed when no one else could? Ross attributes it to Nora being so incredibly adept at what she does, to her sweet nature and to the fact that she never ever complains about anything. Nora’s patience, generosity and understanding are the three attributes that spring immediately to mind when describing her. She won over Mrs. Schriftman and earned her trust.

But it’s not just about providing personal care. Ross, with Nora there to provide assistance, takes Mrs. Schriftman on frequent outings because she just loves going places. They dropped by the Intervention Associates office for a visit just recently; they go to local meetings of the Democratic Committee; trips to Ross’ office and out to lunch are among her favorite destinations.

Alzheimer’s disease is a devastating illness; no one can truly understand what caretaking involves until they’ve walked in a caregiver’s shoes. We have so much respect for Ross Schriftman and Nora Caine for their resourcefulness and dedication to Mrs. Schriftman’s quality of life. They are indeed very special people.

My Mother was diagnosed in summer of 2003. I took care of her at home till she was admitted into a nursing home in spring of 2004. Seeing her slowly lose parts of her personality and cognitive abilities has been difficult but as I say in the poem below, "there is thanksgiving and gratefulness hidden within the sorrow." The experience has given me the chance to learn about the child-side of my mother's personality, and has taught me much about love. Love can be simply being there for someone and holding their hand.

My mother is now in the Hospice program, but is still able to maintain some value in her days and know who I am when I visit. If I try to hard to entertain her she gets upset, so I keep the visits simple by holding her hand listening to a Yiddish CD, or watching TV. I also simulate walking by cupping my hands under her feet and moving them in time with the music.

A Son's Thanksgiving

By Donald Michael Schwartz, Nov. 22, 2007

My mother has advanced Alzheimer's
But there is thanksgiving and gratefulness,
Hidden within the sorrow.
I ink my thoughts,
On this 2007 day of thanks,
For the strength of my Mother's true spirit is rolling, it keeps rolling along.

For the strength of my Mother's true spirit is rolling, it keeps rolling along,
For she is stronger, tougher, wiser and larger than her Alzheimer's,
And for this I give thanks;
And gratefulness,
I can free a precious few of her thoughts,
And calm her sorrow.

In her presence, I am greater than all the world's sorrow,
For the strength of my Mother's true spirit is rolling, it keeps rolling along.
Even though most of her thoughts,
Are imprisoned by the Bastille of her Alzheimer's;
For those few thoughts she can break free, she has gratefulness,
And teary thanks.

And I give thanks,
For fighting through my sorrow,
At the recent loss of her walking abilities, pledging gratefulness,
Of the strength of my Mother's true spirit as it rolling, as it keeps rolling along.
What else will be stolen by her Alzheimer's,
Can obsess my thoughts.

On this day of thanks, above my Mother's bed, now hangs her pre-wedding portrait, freeing some of her thoughts,
And making her feel thanks,
For a mind's glimpse of her life long before the thief of Alzheimer's.
Spying upon her once coal-black hair and vibrant facial colors dwarfed her sorrow,
As the strength of my Mother's true spirit kept rolling, as it kept rolling along.
And for this I have infinite gratefulness.

Riding back from the nursing home on a recent night, I felt a rush of gratefulness,
Many tiny victories flowed together into a raging river of thoughts,
Surging through my mind the sweeping awareness of the strength of my Mother's true spirit that kept rolling, as it always keeps rolling along.
I must keep giving thanks,
And be larger than the sorrow,
And to keep my spirit from the greedy thief of Alzheimer's.

So I say to the thief of Alzheimer's, you can never grow larger, stronger, tougher, or wiser than gratefulness,
And the sorrow you serve can never out power the sweetness of the thoughts,
Of my thanks for the strength of my Mother's true spirit as it keeps on rolling, as it keeps on rolling along.

Earlier this week, we sorrowfully took our 15+ year old, very ill cat to the vet for her last visit. My husband held her as the vet injected her with something to end her suffering once and for all. As I watched my husband bury her in our back yard, I thought "I wish I could end my mother's misery so easily." But I can't. And every single night I pray that something other than Alzheimer's will take her. She's 92, had a stroke several years ago, is paralyzed from the waist down, and my dad died in November, leaving me, their only child, solely responsible for her and her care. To further add insult to injury I must disclose that my mother and I have never been close - actually that's quite an understatement. We just downright didn't like one another. Oddly enough, her vicious personality has mellowed and she's forgotten how must she disliked me - unfortunately I don't have that same luxury. I know my father died from the stress of caring for her and frankly that's not much of a ringing endorsement to encourage me to become her caregiver, but I have no choice. She is in a nursing home, and someday every penny he worked so hard for will be gone, all so she can sit in diapers and ask everyone she sees if they can remember her husband's name. 53 years of marriage, and he's been virtually erased from her mind. I fight with her doctor and the nursing home regarding aggressive treatments and invasive diagnostic procedures. For what? So she can live another day with only the prospect of a clean diaper and more bland low sodium food? This is a cruel, wicked disease. Her sister died of the same cruel fate, tied to her hospital bed. I've promised my children than if I am ever diagnosed I will drive off a bridge, as Alzheimer's is far worse on the family than it is on the patient. Please contact me if you want a photo - I can come up with one of my parents at their 50th anniversary which was sort of the beginning of her decline.

Alzhiemer's has infiltrated my family- more specifically, my grandmother's mind. But not her heart. The mysterious disease came quickly. Grandma Tina had been "getting old," but when she woke one morning this summer and started packing up things from her very own dresser, closet, kitchen, and living room to go "home" we knew she was gone. Overnight, my grandma, my mother's mother, became a blurry person. I can't imagine the blurriness from her end.
But her kindness is as clear as a bell. She still loves animals, Barack Obama, and sweets. And when I walk into her room I am greeted with a smile and kiss, before being asked who my family is and where I'm from.
She's a joy to be around. Her laugh is infectious and her heart is strong. She has not forgotten how to love. She is still baffled by the idea of people shooting other people and remains strongly opposed to war, telling my mom once that she, "couldn't even shoot a monkey!" Grandma's innate sweetness and compassion for humanity is something she has held on to. Maybe, then, this wasn't something she "learned" that could be forgotten. But, rather, it was crabbiness and hate that were learned along the way- even though she rejects them and chooses to live kindly.
I was afraid that she would be angry, scared, and sad. But was pleasantly surprised by the ease of her interactions with every one she meets. She may not know where she is or who she's with, but she remembers how to brighten a day and share a little love.
Alziemer's is a cruel enigma that has robbed the world of a lovely woman, my Grandma Tina. But is has not cheapened the spirit in her or her ability to love. Love, it seems, has only flourished in the tragic ramifications of the disease.

My mother had Alzheimer's for 15 years. She died June, 07 at the age of 93. In the earliest years of the disease, because she could no longer remember things, her tendency toward anxiety melted away. I would say "Ma, you are so much easier to be with now. You don't worry anymore." She would look up at me & say "Bobbi, I can't remember what to worry about!" The most difficult aspects of her personality left her and what remained seemed to be her core.For the last 10-12 years of her life, virtually the only thing my mother said was "I love you."...to me, her caregivers, and virtually whoever she met, unless they treated her like she wasn't there.

Although she could not consistently remember my name during the last two years of her life, she always recognized me. Her eyes would light up with recognition when I walked into the room. As
long as my mother could look at me with that light in her eyes and say "I love you" (which she could except for her last days in the hospital when she was dying), all I really needed of my mother was completely alive and intact. Although for over a decade my mother could not do anything for me, I realized it was the light in her eyes and her love that was 'my mother'. The rest was commentary.
This changed the way I understood the mothering of my own children, what really mattered in all relationships.

My mother was diagnosed in 2003, early on-set... she was 54 and I was 23. I had gone away to college, and just moved back to figure out my next move. In the years since I quit my job and jumped into the jewelery business I had been doing on the side, in order to free up my schedule and help care for her. I spent a year doing that 3 days a week, while my father worked. I now spend a couple evenings a week making her dinner, the business has gone well.
There was a night when she had this amazing, clear moment, and asked if I knew her... I realized that I didn't, and that I wouldn't. It was soon after that I found myself learning how to carry her up and down stairs in a wheelchair. I know her person is still there, even if I can't understand the words anymore, most of the time.

I realize about the time it takes... People often talk about the very first things they noticed going wrong, and then skip to the "she doesn't remember my name" stage. But there is a gap of about a decade of very slow, painful decline in that. There is grief for a person you see everyday.
There hasn't been any choice in learning patience, no matter what my personality tends toward... I must be patient. Or, maybe that's where love comes in. Either way. I lose my patience, maybe those are the moments when the love comes in. When the frustration with the disease takes over the person behind it.

I have recently taken to listening to books and combing the MIT course work about neurology while I work, that is what has changed my thoughts on memory. I have come to understand how tangled up memory is to everything we experience, how many different kinds of memory there are. Different ways of remembering things... We have a whole bunch of senses. How thoroughly that stitches each of us together, even when the eyes can't remember, the nose might.
I've been amazed at the mystery of the thing that is going wrong, how they track the damage through the brain... It seems like we are trying to fix a running car, using nothing but a similar model... Ok, some magnets too. It seems like a losing battle, but I can't imagine anything more human.

I've stepped back from it, And really I have been given small break. There was a sudden decline last year, it was brutal. We finally figured out some medicine problems, and she actually got better. I can't even begin to describe how wonderful that has been... But I have have seen a bit of the future... Also, I'll be better at it next time.

I try to imagine what the world seems like to her, we are pretty sure she doesn't see in 3d anymore. It is something I have to try to figure out in order to do basic things, like handing her a fork. But knowing those things allows me to make everything easier for her, and allows her to relax and not have to focus on those basic things. It helps.
It's a long string of little, ever changing tricks.

I don't have clue one as to how to sum this up... Because there are something around 5 years to go.

I did not cry when my father died. I cried about six weeks prior to his death when I went to hug him and he didn't know who I was. The man who lay in the coffin was not the man I knew and loved and was at the center of my values and faith.

I am an educator and had been researching at great length and writing about the "learning brain". On the day my father did not recognize me, I did a 90 degree turn and began researching the "aging brain". After several years of research that included, reading, attending seminars and tracking down as much information as I could, I wrote a book entitled MENTAL AEROBICS - 75 WAYS TO KEEP YOUR BRAIN FIT. I now teach brain fitness locally and nationally. My goal is to change the path of devestating dementia in as many people as I can possibly reach. If I can save just one person from this falling into this pit, my goal will have been met. I KNOW there is no cure (at this writing) for Alzheimers Disease, but we do know that life style changes can slow the progression of this disease, it is a moral victory.

In the novel The Story of Forgetting, about a family who has Alzheimer’s disease in its bloodlines, these lines struck me: “Alongside this world there is another. There are places where you can cross.” When my father began to lose himself to this disease almost 10 years ago, Alzheimer’s did indeed seem another country, and each of us left behind—my mother, my two sisters, my two brothers, and I--would have to find our own way in. Our enormously tender, great-hearted father gradually turned anxious and sullen and fearful. He began losing things on an epic scale: keys, wallets, shoes, shirts, us. On a trip to Florida with my mother and sister, he grew concerned I’d been left behind at a rest stop, the daughter who had not lived at home for more than 25 years. When my sister told me this, I felt that his massive, generalized anxiety had funneled down to a manageable vortex of me, lost and left behind.
One day he said, “I can’t smile anymore. I’m all broken up inside.”
When you see your beloved parent losing judgment, losing language, puzzling out the function of a fountain pen, the purpose of toothpaste; see him bewildered by these watchful adult children who decline to drive him to his appointments in the past—he must get to his Army post, he must marry that English girl he courted during World War II—-you will dread the thought: What could he become that I would not recognize? And the answer became, there was no father who was not my father, no version of him where you could not find that place to cross over. And the way in, for me, was touch.
My father was well known for giving a "thumb touch," his way of showing children, his own and any others in his path, that he loved and was connected to them. When he had grown very silent, you could always proffer a thumb, and he would touch his to yours, no hesitation, a quick thumb to thumb. When there were so few words left to him, I read to him from Goodnight Moon, while I held his hand. Alzheimer’s takes so much, but the well of emotion in a human being, it does not take. The need for love does not vanish with the loss of language and memory.
My father died last July. Last month my family visited his grave, the first time I saw the gravestone. I had said to my sister I wished there were a way to place a thumb touch right on the marker--and she found a way. She gave the monument maker Dad's Army ID card, which had his thumb print on it, and asked him to have it engraved along with his name and dates. So in the corner there are these wavy lines of Dad's thumb print, and now we have a place to touch him again, as we never stopped doing while he was on this earth.

After the three of us kids grew up, we enjoyed 14 years of the appreciative, peaceable regard that can emerge between grown children and their retired parents. Then, in 1994, Dad was diagnosed with an aggressive form of cancer, and Mom began to show memory trouble. After his passing, it took another two years for us to move Mom from their large house and into assisted living, store most of the accumulations of a 50-year-marriage, and fully undertake the long fight for her dignity and comfort against the emergence of her Alzheimer's Disease.
Over the last 10 years, we have moved her several times, each time into a more structured form of care, only when she could no longer cope with the maximum degree of freedom we could arrange for her. She now lives in a medical Alzheimer's unit in my home city; I have the most frequent contact with her (once a week, usually Sunday at dinnertime). My sister, brother, and I -- with vital support from our spouses and extended family at crucial times, have acted as a sort of interstate care-management team (a blessing), managing the moves, the family finances that support her, the medical contacts, and the stresses among us that inevitably came.
Rising to meet this long progression of sad necessities has kept a bond between us despite our different life choices and disparate home cities. We have watched so much of what my mother loved and most deeply valued -- including her books, her contact with friends, her delight in a rich trove of family travels, her practical competence, her passion for education, and almost all her verbal abilities -- disappear from her awareness (and into the abyss of the illness she most dreaded). I also know that someday we will all be counted in that total of losses. Already our names are fading away for her, though she shows a mostly-wordless emotional recognition now and then.
We have sought to find ways to share the present moment with her, exactly as she is now, to impart to her that she is loved, and to witness that she can still express love through her attention. We still try to speak our memories of our family life to her. Tiny details sometimes seem to register (a name, a reference to a place as it was long ago, a fragment of some long-gone incident); we bring chocolate, help her eat at mealtime when we visit, read to her because she seems to enjoy it. I have no idea where the words go in her mind, but they are conveyed by a loving voice, and I choose to believe that the love registers. I am not given to easy belief, but that faith is essential.
Hating the disease and its injustices has long since become pointless; someday we will complete the grieving that runs through all this. For now, all I know of my mother's world is that we still have her in our lives for a while yet, and she has people who love her in her life. She can still smile suddenly, attend a little, respond, and speak a word now and then at what seems the right time. I know that love moves among us; that is, and always was, the only fact that keeps its importance.

hello sof,

i've been contemplating documenting the story my family is writing--this is the beginning of the process.
my father, grant athay, was diagnosed with alzheimer's about two years ago. he will be 85 in december of 2008. he is an astrophysicist--we lived in boulder, colorado nearly all my "growing up" years--he worked for the national center for atmospheric research in boulder. he continues to do "science"--this is the fascinating part to me. he is still quite functional--but the disease does have a presence in the way he functions. he can no longer read with understanding--has a difficult time with strings of ideas. his analytical skills are waning dramatically. he connects ideas that do not fit together now. he has developed a theory in astrophysics that has the young scientists at n.c.a.r. interested. they have invited my father to make a trip to boulder and discuss his ideas. my father has to work very hard and with great difficulty to put these ideas together--i can see he is afraid to go to boulder and have scientists ask him questions that he may not be able to track-on to answer. he is also extremely flattered. he is also extremely innocent in his desire to participate in life. nearly ten years ago one of his mentors died quite suddenly-my father started having odd-wake you up in the middle of the night-science dreams. he would get up and write down what he was dreaming--scientific stuff that did not completely make sense to him--ideas related to ten questions the man who died had asked my father to compose--questions that could drive his science career. the information coming to my father was regarding these questions--but not his main topic of research in his career. he was afraid to tell anyone in the science community. he told me. i asked him what he had to lose? he said, he might look like a crazy guy. well, now he is officially the crazy guy--and his science is still interesting main stream science communities in boulder. my father no longer has the filter to know if he is crazy, or not? frankly, in these scientific matters--not many of us would know one way or another. i'm interested in how his "edit button"--now off might be allowing him new creativity in his work--even if it is fragmented and incomplete--it might generate leads for future science.

our family has been discussing "dignity"--gain, loss--several of us feel he has nothing to lose, no status to leave. however, it is devastating and somehow the cruelest of wild fates that our "super smart" father has alzheimer's.

i'd like to record him speaking about his ideas. i have a sony pcm d-50 and have been learning to use it--i might ask him to share some of his ideas while i record them. i'm not sure if he will think that is weird, or not--i suspect he'll think it's fine (he wouldn't have a few years ago.)

i also have a canon xh ai hd camera--so i could shoot some footage--somehow i like the idea of the audio track. i shoot still photography so that is also an option.

he's a pretty interesting character--liberal democrat--mormon--bulk of adult life in boulder, colorado--avid outdoors person--in love with the sun (solar physics his gig.)
i'm not sure how his faith holds him up at this point? i was raised in the mormon faith and operate more in a buddhist tradition, at this point.

i'm pursuing media education connected to my work as an international consultant and advocate and designer connected with artisan groups in developing countries. i recently went with a press pass to discuss the spiritual roots of folk art with the artists at the santa fe international folk art market. so--i'd love some direction--and if you're interested i could put a little something together about my father.

regards,
renee athay
303 588 1193

My father, a 30-year career Air Force man, started showing signs of some dementia in 1982 or so, just after a sudden collapse. Later he was diagnosed as having Alzheimer's. This once vigorous, confident,intelligent, & social man began to withdraw in embarrassment & frustration at not being able to remember words, names, stories he'd told for years. He saw himself dissolving, his memories dissapating. He was as much afraid that he would be unable to care for Mother as afraid for himself. For a long time, as his disease progressed, they lived independently, my brother (who lived in the same city) and his wife visiting or calling or both at least a couple of times a week. When Mother's emphysema required an ambulance and hospital stays, Dad was worried he would be unable to react in time when she came home. He was the physical worker in their home and she was the "brains," making the grocery lists & paying the bills. As her disese progressed and she got less oxygen to her brain, she became less patient with him and yelled at him for not buying the right tomato sauce. His incompetence & her resulting disapproval made him so sad. He increased his drinking and cried more often. She died peacefully of a heart attack and, thank God, in a way that didn't make Dad think there was anything he could have/should have done to save her (he would have tried so hard!). My brother and I supported him living in their house (with me there the first couple of weeks) until he decided it was time to move in with my brother's family, as we had all agreed prior to Mother's death. He was given every opportunity to be as independent as possible as long as he was safe.

Now and then, my brother would put Dad on an airplane & send him to visit me, using the airline's Unaccompanied Minor service. I would pick him up at the airport. At first, he would remember that he had a daughter -- I just had to tell him. On subsequent trips, it took him a day or two to figure out that he wasn't being sent away or abandoned in a strange place. I tried working during his visits and sending him to an adult day care, which he liked at first, then got angry when he felt taken advantage of (he would drive a wheelchair client on their outings -- he liked to help). He refused to return. I couldn't depend on him remembering to look in teh fridge for a sandwich, so I just took the time off from work when he was with me. We did things: light gardening, going out for burger, going to pet horses, going to parties (my friends loved him, especially the younger vets), or having friends over for dinner. Dad was a charmer and everyone fell in love with him! He would try to tell his stories, which were funny! and I would help him out (as smoothly as I could) with the parts that tripped him up.

One night after he had gone to bed, I was watching tv (at low volume). He got up and told me to come to bed. After a bit, I realized that he thought I was Mother (we look alike). I told him gently that I was his daughter and he shuffled off. The next morning I asked if he remembered, and he turned red. He said, "If I ever do anything like that again, I want you to throw me out!" I told him I would never throw him out. After that, I made sure to give him some physical affection: hug him, rub his shoulders, take his arm in public, saying proudly, "My father's taking me out to dinner!" My brother reported he didn't get a lot of touching at his house, except from one of the kids, who led Dad around by his finger like a pull toy (he LOVED that!).

Dad was always a gentleman. One night after a litte dinner party, he walked one of our female guests (his peer) to her car, opened the door for her and made sure she drove off alright. He kept his sense of humor, even after his ability to talk disappeared. He'd make a funny face and wink to see if we got the joke.

The last time he came to visit me, he was so frightened and confused when I picked him up at the airport, it took him 2 days to figure out that I wasn't a stranger. Until then, he had been wary and suspicious. One day he struggled mightily to express himself, to say that he was so appreciative of what my brother and his wife did for him (he had long ago lost their names or their roles in his life). He said the same of me, but could not say "you." His words were mixed up, but his blue eyes were clear and he was determined. I understood him: he said he loved us.

Later that week when I was driving him to the airport, he was angry and hurt. He wanted to stay with me. I was unable to care for him for long periods of time; single, working at a job that paid too little for additional care at home. It broke my heart to tell him I couldn't. My brother and I decided that traveling alone was too stressful for him, and we wouldn't do it again.

My brother and his family moved much farther away for work and Dad went with them. It was too expensive for me to visit, so I didn't see Dad again until he had passed. My brother said Dad always retained his sense of personal dignity and often showed flashes of humor, even as he became unable to feed himself, or to walk. He also showed ingenuity from time to time, kicking out a window to escape and "go home," and hitchhicking. Luckily, the guy who picked him up realized something wasn't quite right and took him to the police, who read his ID bracelet and called my brother, who had been out looking for him.

Dad didn't like "being messed with," having his diaper changed or being turned in bed, and his eyes would blaze, though he had no capability of caring for himself. As a joke, though, while being fed ice cream, he would grab the spoon in his teeth to hold it, then wink at my brother, let it go and grin.

When I was younger, I was a home health aid and had Alzheimer's patients. Although I hadn't known my clients before Alzheimer's, I came to a theory that, as the disease progressed, one's social personae fade and one reverts toone's core nature. One client was suspicious, argumentative, & jealous; another was fearful & timid; Dad was sweet & both wanted to be helpful AND wanted someone to take care of him. Throughout his disease, in my experience, he responded to loving acts and loving attention.

Of course, my brother and his wife did most of his care, for which I am eternally greatful. My lot was much easier from a distance. Dad didn't fight with me when it was time for a shower -- I could talk him into it, because he was more Dad when I saw him last. I didn't have to watch him 24x7 so he wouldn't escape from the motel when evacuating to avoid a hurricane. I didn't have to trick him into going to the doctor (he didn't like doctors, except for Mother). I didn't have to help lift him out of his chair several times a day (he was big man, even after he started losing weight). I didn't have to watch him fade away on a daily basis.

Dad's personality got smaller, more limited, but retained some essential and recognizable elements of Dad. He was loved and he loved, again, with a more limited emotional vocabulary, but it was there. When he zoned out, staring at the films (memories?) that went on in his head, he was still, essentially, him. We just had less access to him and he to us. His life was drawn further and more deeply inward, or, perhaps, so far outward that he straddled this world and the next, walking beside Mother and resenting when his physical discomfort forced him to return to this more limited existence.

I like to think he journeyed a lot from his bed. From my distance, I encouraged him to do so. Mentally, I sent him pictures of he and Motehr dancing, of HIS mother and Dad greeting him when he crossed the bridge, of his brotehrs and sisters who had passed before him, swelcoming him and surrounding him with love.

When it was clear he was dying and I was making arrangements to fly out, I told him, "Dad, you don't have to wait for me. Go when it suits you. I love you." He died soon after.

Humanity remains as long as there is life, but it may not express often or in overt ways. It is subtle sometimes, and if we define it too rigidly, we risk missing it. It did not pain me to know that Dad could not say my name. I saw in his eyes that he knew we were kin, perhaps on a more fundamental level than genetics. We recognized one another on a more fundamental, rather than biological, level. We were aware of and acknowledged, I am convinced, the presense of God within each of us. God is Perfection and Love; it was my construct of my father that I missed, that I mourned, for he is not, nor will he ever be, gone. Spirit does not dissolve or disappate; it remains intact, complete, healthy, and divine.

friends: i cannot help but bring this up. i have heard recently that alzheimer's disease is on the rise and the terrible sadness is brings with it. however, in truth, the people suffering from alzheimer's disease, did have a life. they did have marriages and children. they enjoyed much of what life has to offer and yes, it is truly sad when the brain deteriorates.
however, please think of what it is like when your fifteen year old child develops, for whatever reasons we don't know, schizophrenia. another devastating brain illness that attacks people. when they are starting out in life.
i have been the full time caretaker of my son, who is now 26, and has suffered every day with mental disability. he didn't get schizophrenia from military service. he didn't get to go into the military. he hasn't caused his spouse to be separated because he's never been with a girl. or had a marriage. or children. or friends. or college. or social life beyond what he had from middle school. no proms. no high school graduation. no driver's license for him. i drive him on the few outtings he is comfortable with.
so, friends. please cut me some slack. it's not that i'm not compassionate when i hear how much people have suffered around the world. illness, natural disasters, even war! because life is so precious. and some of us have had very little of it. those with schizophrenia suffer more, much more, than any of us could ever imagine. they are walking dead. i know because i have lived with it for many years. watching my son worsen day by day with delusions, inability to focus, no emotions, odd and embarrassing.
alzheimer's it's bad..really bad. but at least, perhaps, there was a good life in there somewhere. so please, while you are struggling with a country that does not provide professional care for people who have lost the ability to manage their bodies/life. and watching as your family member behaves crazy....they did get some living in. not everyone does. love to you all.

My name is Niles Frantz and I work in the PR Department at the Alzheimer's Association national office in Chicago. Please let me know how I can help you with this project.

Both my mother and father have been afflicted with Alzheimers. My mother died 4 years ago and my father's care has been up to my sister and I. We kept him in his home as long as we could, then in February 2008, transferred his care to a nursing facility. The disease has changed the way I think about:

Love - I can show love to my father by visiting and making sure his needs are met. I can show more love now than I could when he was not dependent on others for his care. The love I show is changed - it's a one way communication now since he shows very little emotion or recognition of us. I have a duty to him now where before he was afflicted with the disease, it was a pleasure since the love was a two way street.

Memory - We have lots of wonderful memories which we tap into to get through these difficult times. He and mother took us on vacations every year, even though, looking back at their finances, we don't know how they did it. Family time was important - taking pictures, spending meals together - spending time together.
It has made me much more sensitive to remembering things that are in my life - kids, friends, church, etc. A kind of "storing up" of memory against that time that I am diagnosed with the disease. I cry as I write this because I don't want to think that my children will have to take care of me the way I have had to care for my parents. Not that it was a burden, but that I feel robbed of the last good years with my parents.

Personality - Both parents had very pleasing personalities. Daddy was outgoing, mother, more reserved, but together, they made a good match. 56 years worth. As the disease progressed, I have heard it said that whatever personality they had, can sometimes go opposite but that didn't happen. Mother got grouchy and suspicious - that much was opposite, but those were traits that she seemed to move through, rather than a permanent personalty change. My dad got somewhat stubborn, but in life before Alzheimers, he was pretty strong on his beliefs and the things he wanted to do.

Humanity - Seeing this disease up close and personal, makes me question - why? Why me? Should we be living this long? Why take care of ourselves if we're just going to be preserved for some nursing home. Was this environmental? Is there something I can do differently than my parents? How do I keep my brain clacking as long as my body is running? What will be my children's reaction when and if I am diagnosed? Right now they think that day will never come, but my parents "got it" at the age of 84 and does that only leave me with 30 years of sanity? Shouldn't I be doing something more important than what I'm doing? If so - what?

Thanks for asking!

bkk

My father was a mechanical engineer, a designer of flight and communications instrumentation used in Boeing jets and space shuttles.
My mother built her life around him and their four children. He watched as his memory began to fail and his life patterns were no longer possible. He was frustrated when unable to drive, but angry when he was no longer allowed to ride his bike. Rarely a man to watch television, except briefly as he passed through the room while executing various self-assigned maintenance tasks, he was undone when he could no longer perform even the simple fix-it jobs. There was no longer any way for him to feed his spirit, to feed his soul through his intellect that often lived through his hands. Dad became dependent, following my mother throughout the day. He recognized that she was his connection to something, though he was not sure what it was.

My mother did everything she could do for him. She was determined to provide his home for him until the end. But it became increasingly apparent that the Alzheimer’s was destroying both of them. My mother was unable to sleep, unable to take care of herself, unable to relax, determined to be patient and then ripped apart when her limits were reached and her emotions shredded. My father, unable to bike, became a walker. He wanted to walk constantly. It was all that was left. So he would leave for walks continuously. He refused to be contained and the engineer in him could undo just about any lock. He was expelled from the day program after he ‘eloped’ several times. My brother witnessed the ultimate scene. He had just turned onto our street and first saw Dad purposefully heading down the sidewalk. Following him, 30 feet or so behind, was Mom, screaming at him and hurling smoking and charred hamburger buns at his head, buns that had burned while she had been distracted by him leaving the house yet again.

So we began the assisted living routine. I say routine, because in less than a year, my father ended up living in 5 places. It became apparent to us that filling a bed at a facility was the driving force behind decisions to accept a patient. Besides Dad’s exit seeking behaviors, he had also become aggressive. He would strike out, kick, and bite when he was being showered. Although these two behaviors were documented, my mother would be assured that their facility was well trained and could manage Dad’s behavior. There would be a few weeks of calm, and then the call would come indicating that the facility could not handle Dad and he was being involuntarily discharged. And the search for a new facility would begin again. My mother was physically shrinking and emotionally exhausted. She was deeply depressed. But throughout all of this, what seemed to bother her the most was that Dad no longer remembered her. She took this personally and it tore her apart. She felt that over 50 years of life together was completely gone. It was as though his loss of memory was destroying hers as well. What frightened my siblings and I the most was that she spoke, not infrequently, of seeing no further point in life. Our mission became, in addition to supporting the needs of our father, trying to figure out how we could save our mother from the ravages of this disease. It was as though Mom was being sucked into the riddled passages of his brain, trying to bring him back and losing herself in the catacombs. We, more distant, had our somewhat more stable lives to act as lifelines as we moved through the traumas. So we tried to keep her head above water as she tried to keep his head above water. It was as though we created a web. Each of us had strengths and held onto different parts of our mother, sharing, distributing, spelling each other. At the end, after each of us let go of Dad, clearly telling him good-bye, and then Dad let go of life, it was also as though the disease let go of Mom. No longer needing to continue the fight for him, to care for him, to find him in the vacant eyes, to help him find her, she gradually, though surprising quickly, found her way back to herself, to her life, to her memories and she found them solid and true and there.

My parents were/are self-sufficient and taught us to be so as well… to be strong… not to need to ask for help from others. One of the biggest changes was watching my mother learn to receive gifts… gifts of assistance and gifts of food and gifts of love. We watched Mom learn that it is ok to ask for help and to recognize that there are many in our circles who are waiting, hoping that there is some way to help and that it is a gift to them when you reach out for help from them.

There was also a change in all of our relationships. My parents never really had needs of us, or even requests. They very much believed in letting us live our own lives without interference from them. This experience changed that and though it was difficult, it was also beautiful. We were re-forged as a family. Our personalities became more intense, more saturated, and our relationships evolved as we moved through the life cycle of the disease.

There was pain and anguish and despair, but woven through it all was a beauty and a celebration, quietly glowing, embers fanned by our memories. These memories kept, and keep, our father alive. With them we have been able to reconstruct or reestablish or perhaps reclaim, relocate that same essence, fully alive in a different more ephemeral dimension. When Dad was alive, near the end, he, the ‘real’ person, would periodically, unpredictably surface. He was still there, trapped in the catacombs and how I treasured those glimpses of him. Now, his essence, through his memory remains strong and permanent.

As we go through traumas, through feats of strength, or tolerance, if we connect, even briefly, momentarily, with others, both sharing and receiving love, then we can keep the essence of what is good and what is human, alive and sparking. We can and will move, eventually, into healing within ourselves and with others.

--- Laurie Kigner --- August 26, 2008

Please let me know if the web site I constructed with four images does not work. lk

My mother, Roberta, was born in 1927 and died in 2005 after a lifetime of love, light, and happiness, as well as a 12+ year journey into and through dementia. I am her daughter, namesake, best friend, confidante, and caregiver, and student. She had me, her 4th child, 8 years after her “last” child, at age 41. She always joked that “she grew up with me”: we ate our first peanut buster parfaits at DQ together, bought our first pair of designer jeans together, and spent many an evening telling jokes, playing cribbage or shopping.

I always described my mom to others through her personality: She was funny, caring, and remembered everybody’s birthday, anniversary and special event. She was the keeper of our family photos and history. She had an extensive memory and could beat anyone at scrabble (I swear she memorized the entire dictionary, even though she had only a 9th grade education), could solve the daily crossword in moments, could solve mathematical equations in her head, and remembered every song she had ever heard – music and lyrics. (She could play them all on the harmonica, as well.) She was a deeply religious Catholic – she converted as a young adult and attended Mass on weekends and Holy Days as well as joined several service and social organizations at church. She was always moving – baking, cleaning sweeping, caregiving, but never sitting for more than a few minutes. She also had extremely low self esteem, had frequent mood swings and crying fits, and we often said behind her back that she “needed to be needed.”

About the time I went to college in the mid-1980s, my father’s health declined and mom’s behavior became erratic. She would forget then remember things (like how to roll down the window of a car or tie her shoelaces or how to get from church to home), she started making errors in her bookkeeping, and started buying too many of things when she went to the store (once when we came home we found over 20 boxes of Jiffy cornbread in her cupboard). The family chalked this up to her dependence on my father and adjustment to “empty nest syndrome.” I remember before my wedding in 1988 having a serious discussion with my now-husband about the fact that marrying me meant marrying my mom, too, as somehow I always knew she wouldn’t be able to live alone.

My father died, after many bouts with illness, in 1993. By this time, mom’s erratic behaviors were noticed and brought up by neighbors and friends. She was diagnosed with “probable Alzheimer Disease” (and later multi-infarct dementia which brought with it grand mal seizures as her brain was destroyed cell by cell). She shuffled between my sibling’s houses and her own, and in 1995, my husband and I became full-time caregivers.

The first thing I remember noticing was that I had to completely change my definition of my “mom.” All the personality traits I described her as – remembering birthdays, anniversaries, jokes – no longer applied. She didn’t so much lose the facts, as the connectors between the facts: I would remind her of an upcoming birthday, expecting her to then want to go shopping for the perfect gift (as we used to), only to have her look at me and flatly reply “why should I do anything for them? What have they done for me?” I would give her three or four things she could do to keep busy, only to find her staring aimlessly at the wall, having no clue as to how to transition from item 1 to item 2.

Around year 5 or 6 of full-time caregiving, I began to half-jokingly proclaim that the reason my mom was living so long was because she still had something to teach me and I wasn’t learning very quickly. By 2002 (year 8), I was always working, always moving, always doing something – and I had extremely low self esteem, had frequent mood swings and crying fits, and people often said behind my back that I “needed to be needed.” I don’t think this was the lesson she was trying to teach me.

A series of events happened that year which forced my husband and I to move my mother into a nursing home (she was completely incontinent and needed 24 hour care by this point). At an all-time low, I started seeing a psychologist and a spiritual director. With help and counseling I made a startling revelation just 2 weeks into my mother’s nursing home stay: No longer able to physically care for her, I had nothing to “do.” I was forced to spend days sitting with her and holding her hand, gazing into her eyes while sitting on a rubber mat (since she had frequent seizures, her bed was next to the floor). My mother was teaching me to “be” as she was learning to “be” herself. I spent the next three years on my own spiritual journey. To connect with her ever-distancing “surface personality,” I began to imitate things she had done in her life – I prayed her favorite prayers, sang her favorite songs, joined organizations she did – all in an effort to ask her questions about what brought her joy, light and life – the questions I never asked when she could answer me directly.

I began to define life and reality and our essence differently (and I think she did, too). People who saw her in these last years were sad about what she “lost” – but she was never unhappy. She never had a feeding tube or IV and continued to eat three meals a day for three years in the nursing home. She sang and hummed, and the nurses and aides all commented on her peaceful, loving nature. I started saying half-jokingly that in every life we must have equal amounts of “doing” and “being,” so my mom was just catching up with all the “being” at the end (and I’d better learn how to be now or face a similar destiny).

My mom died in 2005, and I consider her a mystic and one of my greatest teachers. There is a calm that one feels when being completely in the present (and Presence) with someone who is no longer trying to use external memories or facts to define themselves. There are so many things we can learn about heaven, God, the Divine when we are prevented from making ourselves busy and “doing things” when we are really being asked to sit at the feet of the Master and Be.

My great-grandfather had Alzheimers. He lived to a ripe-age of 96. He passed about a month before his 97th birthday. I remember watching him as a little girl slip from being an active farmer, who insisted on farming "the old way," to a man with no current memory sitting quietly in a nursing home. It was he who chose to go. My mom and grandmother tell the story of how he was out in the fields to bring the cows in one winter day, and found himself loss and disoriented in the fields he had worked in for more than fourty years. He called my grandma and requested they look into nursing homes. Together, they chose his nursing home and he made the decision to move in.

Thinking back, it's amazing watching the disease progress. He was also losing his sight and hearing. He eventually forgot who I was. Everytime he saw me, he thought I was his sister who died during the influenza outbreak of the 1920's. It was the hardest watching my mom and grandmother deal with the effects of the disease. Watching them taught me patience and love when it came to the elderly population. We would visit in the nursing home listening to the same stories told repeatedly and having the same questions asked every 15 minutes or so. My mom and granma would listen without correcting, and answer every question as if it had been asked the first time. I was taught to not argue with him about who I am, but to just go with it and appreciate the time we had left with him.

Now, I am a social worker in a customized living apartment building for seniors. We emphasize what I like to call "Safe Independence." Many of our people have been diagnosed with dementia, and others with "aging related memory loss." Growing up with my great-grandpa (or grandpa B, as I called him) taught me the patience to answer the same question several times during a 10 minute conversation, or to respond as if it were the first time to being told a story.

It's sad to watch people forget their families. It's easy to think that the loved one doesn't love you, because they have forgotten. It serves as a reminder that one never knows the future and to love what one has now while one is able. When i hear some of the past professions of my tenants-buisness owners, doctors, etc., it reminds me that no one is "safe" from it, and ignoring those who have it doesn't protect you personally. It reminds me that they are people too, despite not remembering. And those people still have strengths.

My Grandpa-B always was a loving and caring man. I've learned that despite the personality changes that occur with the disease, a piece of the person will always remain, and to remember who that person is. To take that piece, and find a way to incorperate it into their current life that will give them a feeling of well-being and importance. It is frustrating not to be the person you once were, and it's important for those people to feel some of that as their disease progresses.

My good-humored dementia-diagnosed people joke with me that "at last I'll be able to forget those stupid things I've done and the mistakes I've made!" It's important to remember to smile and have a sense of humor, as morbid as it might be somedays. I also have learned from my Grandpa B to never say "You've already told me that..." or "I've already told you!" Patience is key. And this patience learned from my grampa has affected all parts of my life when understanding the older adult population. They all were someone once, and they will continue to be that person, even when they are left with no memory past 1920.

Alzheimer’s Disease; A Healing Journey

Dad just turned 83, is about 110 pounds and still lives on his own in a one bedroom apartment filled with artificial flowers, year-round Christmas decorations and a menagerie of stuffed and plastic animals. There are various items he’s rescued from the dumpster and hundreds of pictures cut out of magazines that are going to put into scrapbooks “someday” when he’s not busy.

Dad drives across the street to the small shopping center every day on this three-wheeled scooter where he gets groceries, shops for more decorative items and jokes with the store clerks. Often, with my husband’s help, I go over five to six days a week to make sure he’s getting his medication, is eating and to take him on errands to places his small scooter can’t reach. I refer to these visits as “Groundhog Day” (in reference to the movie) as they are always the same. I try to pretend, as he shows me through the apartment, that I’m seeing for the first time the tiny cow in the the mouth of the toy alligator which is surrounded by small plastic animals readying themselves for a rescue attempt. I try to pretend that it’s the first time I’ve seen the stuffed toy dog, it’s shiny beady black eyes replaced by mismatched blue human eyes cut out from a magazine. I try to pretend that I’m hearing for the first time how he used to be a cop, that his father hit him with a lilac branch (but only when he deserved it), and how clean his house is and that he does it himself! I try once again, to listen as he repeats at least ten times that everyone around there calls him “Bill”, that he’s losing his vocabulary and memory, and he’s not afraid to die. But I know he is.

Dad would never have been a candidate for a “Father of the Year” award. He had an uncontrolled temper, physically and verbally abusing our mother as well as emotionally neglecting and abusing my brothers and I. We didn’t like Dad and am not sure we ever loved him. I don’t see that side of him now. With the onset of Alzheimer’s, Dad has become frail, vulnerable and childlike. He expresses appreciation to my husband, myself and my younger brother, who takes care of his finances and supports me in all I need to do for Dad. This new dad is replacing unpleasant memories with pleasant, often amusing ones like this summer when he held his new stuffed tiger up to the open car window making it growl and twitch it’s tail at passing cars saying excitedly, “Look! They think it’s real!” My brothers are unable to experience this new dad, as they live in different parts of the country. So I sometimes share stories like these with them, leaving Dad’s legacy a little less tarnished.

In this aspect, Dad’s battle with Alzheimer’s is a healing journey for both of us. It is also one of the most difficult. It is a tangle of doctors and social workers who mean well, but chastise me for letting Dad live alone. After long days of working at my full-time job, there are mazes of resources to search through for memory building programs, home care and medical treatment. Sometimes I wish, when Dad doesn’t answer his phone, I will find him peacefully passed away in front of the T.V., hoping he won’t have to live in a world where he doesn’t know who or where he is. When leaving Dad’s apartment and I find my patience depleted and the worrying too much to handle, I ask God for the strength to go back and do it again the next day. And He does.

Thoughts About My Diagnosis

I was diagnosed with Alzheimer’s disease in 2006. This is the worst possible diagnosis I could get, short of suffering a crippling stroke like my Dad or losing my eyesight. As I pass from conscious connection with Alzheimer's I am told I will not know what is happening. The pain of it is suffered by those loved ones around me.

None of this spares me the pain I will visit on my wife: robbed of a partner in exchange for a ward and charged with the effort and the cost of caring for me. I am saddened for my children. I will not likely experience their progress in life, nor growth of my five grandchildren I now have and any more that may come. I will probably not be around or lucid if I am there for their weddings and births of my grandchildren.

Although initially devastated I quickly arrived at this way of thinking about my diagnosis of Early Alzheimer's. I believe that things happen for a reason and according to a plan. Whose plan? I don’t know.

My plan set in this lifetime it is not! Whether it is mine devised somewhere else, the plan of my higher power, or a plan having its source elsewhere, I have no idea. It is a plan followed by me in spite of me, taking me often into places and directions I would rather not be.

Much of where it has taken me has been painful. As I learned in suffering through Alcoholism years ago, learned before recovery and learned after recovery from it, I am the better person for having experienced where I have been. It all turned out as it ought. All of the events have tied together into a definite pattern.

I can see this now. I have realized it retrospectively. I see it now in the serenity of my senior years. This has been one of the best things about growing old. I no longer have challenges to meet. I have met them and my serenity is the result. The years as they have unfolded since my recovery from alcoholism have been good ones. In most ways good because of the experience in recovery it provided.

I.

I have also known I was not finished. I hoped I was finished but knew I was not. I wondered what was yet to happen. That has been my view in these recent years as I have been summing things up.

It was not complete. I have not done as much for my family, my fellow man, my world, as I would have. I have been troubled for some time that I was not doing as much as I should. Others were. I felt empty in my self in this regard.

When I thought about it I reasoned, if I really believed I was living a plan, if my attitude was willing, the right thing for me to do would come along. When it did I would act. Although I wondered whether or not I was shirking or just fooling myself thinking this, I was prevented by one circumstance or another from going right out and getting something else started. It was in trusting this plan I at least felt a little peace about what was lacking in performance.

When at peace I would think, I wonder what my next undertaking will be and when it will present itself. I honestly believed that and found serenity relying on it. I believed I would fulfill the rest of my life with something more that would be meaningful for me. I would find something with which I could leave at least a little mark having helped others.

II.

On June 30th, 2006, I learned what my next challenge is. It was in the Doctor’s office when it presented itself! I have Alzheimer’s disease! It was presented to me then and there! What I do about it will be my measure of my last days. I have five to eight good years to find that out they said, maybe ten or twenty years if I am lucky. I pray to my Higher Power that I have the strength, the fortitude, to make the best of this time. I further pray that I may leave a mark because of this.

I predicate my last task on this: “What do I do about my diagnosis?” The measure is simple: “Make the best of it!”

Challenged I am. Ready? I have been waiting. Now I begin. It is here I plot my end game.

My AA experience offers the formula. They told us “Let go! Turn it over! Live but one day at a time! Accept, accept, accept some more!” In these aphorisms I recovered from Alcoholism. With these aphorisms I learned to place every issue of my life on the table. Turn it over, it works I learned. I couldn’t quit alcohol; I tried and tried some more. I turned it over as they told me in AA. I turned it over to my higher power. It worked. Not only for me but everyone I saw who turned it over and let it work.

It worked time and again in my life after that. And yes, there were times of extreme pain that my only remedy was that: turn it over. I put it on the table; I said “Help!” It worked, every time it worked!

So, I need a map?

I have turned my Alzheimer’s over to my higher power. I can’t handle this. It is the worst possible thing that could have happened. What happened to my blessed senior years? Why?

III.

I’m left with more to do. Maybe I will even leave a mark by reason of it. I will be remembered having done something of real value by living. I hope so and I hope I am equal to this challenge.

Positioning it in this way starts giving strength. Better yet, that strength is accompanied with a sense of peace.

I first sensed peace when I finally understood why I couldn’t keep up.

For many years before diagnosis I knew something was messed up, things were awry. It took me longer, always, with everything. I missed so much, more than I ever did; too often this was happening.

I couldn’t keep up in simple conversation. Things would not come up quick enough to hold my place in a group. I had to think over what was told me to understand. I was a lawyer and everything I did was harder. Forty three years, in the Courtroom much of the time and the basics were getting past me.

When I learned why, some sense to this became apparent. I wasn’t keeping up because of illness. There is nothing I can do about it, nor can anyone else. That is the way I am now! It was kind of like, there is nothing wrong, that’s why I can’t keep up; there is everything wrong but it is ok I can’t keep up. I must deal with me as I am not as I would have me be.

With this realization there is both relief and release. I am what I am. Now I must determine what I can do with what I am. I need no longer beat my brains over a lost cause, I will fashion a life within the new definition.

When I joined Alzheimer’s Org I told them although my background as a trial lawyer equipped me I was burned out by it. I did not want to speak publicly or advocate because in the later years pre-diagnosis I found it so nerve wracking. There was a time it was not; it had become that.

After about a year I did a public panel for a Jewish Family Group presentation. It went marvelously, I loved it, was good, and I was not in the least nervous before, during or after. I volunteered for another presentation with our local Alz.Org. This was smashing. Another AD friend and I comprised a panel monitored by a wonderful Alz.Org rep Michelle Barclay at a health providers’ seminar.

After this second experience I knew I had found my voice. I was once again at ease speaking. I was no longer trying to keep up. I could be natural within my new definition and this worked just all right. With this new realization I recognized an action I could take that makes sense.

I can speak out on Alzheimer’s. As one afflicted in the early stage I have the ability yet to communicate. I have the experience of this disease on which to assess what it is like to have it. I have the ability to talk about it and share it. It will give me the opportunity to make worth of having this disease.

In addition I still have some knowledge of the law and government both with which I was involved in practice. As a first step in this I have prepared, nearly finished, a paper describing what I learned about Estate Planning with Alzheimer’s prognosis as my future. What I learned is not pretty.

This gives me cause to advocate. We have a problem. Not just those of us and our families with the disease but the entire country. We are just the tip of the iceberg. There is more to come. The boomer population is just coming into the age orbit of the increase in incidence of this disease. At it now stands, if you have funded your own retirement there is a good chance that will go away before you or your spouse will have much with which to survive on retirement.

If everyone has to go on the public trough we are in bigger trouble. We have to find greater economy with which to care for folks with this disease that are not estate depleting as institutional nursing and assisted living care has become.

IV.

Beyond realizing, accepting, appreciating, another charge remains agenda for me.

In addition to action I have homework. In my home and in my family circle I must retain a real presence in my process. I must do the best I can. That means learn to accept that I can’t do it myself. I am now vulnerable. From that I cannot escape. Like never before I need love, help and support. This need is growing, exponentially. I must open myself to those around me and more so those with me: Our caretakers.

This is certainly an equal opportunity giving disease. Our loved ones face our loss more dramatically and more finally than we do. For them it is a moment at a time. They face the continuing degradation of who we are. They see who we are no longer and suffer its loss, bit by bit. They do this courageously, lovingly, kindly. They do not avert their eyes or walk away. They persevere.

They do this on dual tracks. They grieve what was; what is no more. Then they care for what remains and learn to love that, irascible and oblivious as we might be.

Too often as not we do not have a clue. We do not sense the loss as much as cope with what results. About this we become preoccupied. It’s said this disease is self centered; we are more that than we ever were. When we do pull inward they lose contact with us.

We ask: “what has changed? I don’t see a difference!” This can be so utterly painful for our loved ones, those caring for us. About this we are too unaware to recognize the difference, to empathize with them over their very real loss, to value the difficult task they undertake in caring for us. Least of all do we appreciate the alteration to their lives, the pain of which remains all too apparent to them. We don’t, we see so little of it. We are too caught up in what we are becoming.

The sum of it is expressed this way concerning Alzheimer’s:

Here I am trailing to death
In a wake of sorrows and sobs of those who see me go.
To the world around me my conscious dims,
My skill to care escapes my hand,
Weight I’ve become, and burden too.
And here presents my personal parody:
I must grasp and hold so tight
That tendered love provided me.
It commandeers, cares, does for me instead,
Standing in my place, their hand with mine,
Lovingly leading me along life’s final frame.

V.

The foregoing is not intended to sound despondent. I mean to sound real! Real and honest, that is my intent! Real in this:

1. There is a way of dealing with this disease. It is found in acceptance. That’s not so bad; in fact it gives direction for the final course.

2. In the new paradigm it provides direction to course, direction that is quite positive. Make the best of what we have. In that there is so much we can do and so much we have to do. I find this exhilarating. I have an agenda for this last chapter.

Honest in this:

3. Equally important if not more than the forgoing is my third point. We are not, we cannot and we won’t do it alone. Hey, we actively share our virus with our loved ones. It’s truly a family disease. This strikes me as so important and so easily forgotten as we deal with our plates overflowing beyond full. Help is there. We so badly need it. We must accept it. We must do this with love. We must in turn recognize the great love from which it offers and the tender concern behind it.

Behind that is our need to accommodate the cataclysmic disruption our disease creates with those loved ones, viz. our caregivers. We too easily lose view of that which is tragic. Their lives have been a transformed. Before, they had enough to do. Now they have ours piled on theirs to do. Their lives become lived for two, with little time for anything else. Sometimes we have the blessing of overlooking it. They do not. We are in their ever so conscious faces, all of the time.

Unfair as this seems, my heart must accept it. The only other option is inappropriate. More than inappropriate it is offensive to the tender made by the Caretaker. Such an insult it would be.

I am not despondent about my fare. I am trying to get my heart around the painful proposition this paradox provides. It isn’t pretty what the caretaker faces. Ours is so much easier. We but face the sunset and go to it in diminishing awareness. They must pick up after us.

To me it is my act of love to give this my awareness, to give this respect, to understand, empathize and lovingly grasp that which is offered me. Doing this my feeling are full, in awe and silently sacred.

What I do distress is this. I wish I had more to support this concern. Something said or seen to make my grief relieve for the pain my disease wreaks beyond me. I want to have this concern. I know there is love found in accepting it. I just don’t want that part to hurt so much.

I hope therefore this is not despairing but rather trying to cope and make the best of it.

Mike

I took care of my aunt who has Alzheimer's because she had no children and no one else to step up. It was very difficult because in the beginning, I knew nothing about the disease and also my aunt and I had a rocky relationship going back many years. She was good to my children and grandchild and for that reason, she deserved the best care I could give her.

Prior to caring for her, I was a loner, choosing to not have close friends because of difficulties in my childhood and youth. I lived each day because in spite of my difficulties, know that life is a gift. My life had no zest. The disease only made this more prominent since it tends to isolate both the caregiver and the person with the disease. My emotional and mental health began to deteriorate as I spent more and more time alone with Aunt Myrtle. Finally, my phychiatrist suggested I go to the Alzheimer's Association for help. There I found the assistance I needed. Once Aunt Myrtle as placed in a facility, I began to volunteer.

For seven years I have devoted my time and energy to the Association's Delaware Valley Chapter. I live on Social Security and during my second year, through conversation, the staff learned that I lived in an old, drafty house and had need of heating oil. They filled my oil tank that year and for two years after. For the first time in my life, I have opened up and have wonderful, close friends who care about me and look out for my welfare. I have tried to push them away, but they won't go. Through them I am learning about unconditional love. My friends are precious to me.

I wouldn't wish Alzheimer's on anyone and even though she may not have understood what I said, I told Aunt Myrtle I was sorry she had Alzheimer's but eternally grateful because my caring for her has opened a whole new life for me and for the first time there are days when I wish I could live forever.

It's painful to see people lose their memories and their identity, but I know from caregiving that they never lose their humanity - somewhere, deep inside, they are alive and I know because of those rare moments when Aunt Myrtle would do or say something that gave us a glimpse of who she used to be.

I volunteer no less than 40-45 hours per week at the Association. My heart aches for everyone with the disease and every caregiver. My purpose is to do everything possible to help raise awareness and money to eradicate this horrific disease. Of course I could use more income, should get a part time job to help pay my expenses, but my life is full, as long as I can pay my rent, car insurance and buy food, I have everything I need. Most importantly, I have a reason to get up in the morning.

While I don't belong to an organized church, I have always been a spiritual person and my faith has grown and continues to grow through the nurturing and care of my good friends

There is so much that apparently drives us apart as human beings. Yet with all our differences, we humans bond in our understanding that the one most terrifying and destructive feeling that a person can experience is isolation, in the sense of feeling locked out of the possibility of human connection.
Who would more fully experience isolation and severe disconnection than a person with Alzheimer's or other dementing illness? I remember watching Ida as she sat near the nursing station during one of her more confused days. She tried over and over again to get the attention of anyone in the flurry of people rushing by her. At first she smiled and tried to establish direct eye contact. Ida was clearly a woman who spent a lifetime in social connection with others and when the smile didn’t work, she leaned over and grabbed at anyone passing by. Some people pulled away and continued on. Some scolded her. Then, of course she called out in her language of many noises. When no one responded she turned up the volume. Then people did respond, telling her to stop shouting and to keep quiet. Ida eventually retreated into herself with tears. What else could she do? She was powerless over changing her situation, helpless over connecting with others, essentially invisible.
Being a social worker and interacting with Ida and with other persons who have dementia taught me that my function was not to figure out what actions I could take to help her. It was not about what I did or did not say; it was not about her getting anything from me, or my doing to or doing for her. As Dr. Miller, co-author of The Healing Connection, writes, “it is about being in the flow of human connection rather than out of it.”
Persons with dementia helped me learn that the diagnosis of dementia does not, by itself, alter a person’s enjoyment of or satisfaction with being in connection with others. The disease does, however, alter a person’s ability to maintain connections, which poses challenges for those of us who are not sure how to connect when the rules change. By rules, I mean the familiar or predictable learned behaviors or ways of interacting that are generally accepted as socially appropriate. We can feel lost when we try to connect with a person who is not playing by the same rules from moment to moment. How do we relate to someone who doesn’t speak with the same familiar sentence structure as we do or who uses the wrong words all the time? What are we supposed to do when the person with dementia comes to the party wearing her bra over her dress? What do we say when a 94 year old woman thinks she is still raising young children that need to be picked up from school? How are we supposed to react when we have known this person our whole lives and she is not responding to us like she used to or, perhaps, does not even know us at all any more?
Connecting with the person who has dementia is challenging because she progressively forgets the rules for connecting in familiar ways. Her inability to remember the rules and her unusual behaviors are a result of a disease process. It might be structural changes in the brain and/or destruction of brain tissue but something has occurred in the brain that has changed the person’s ability to connect with others. Her memory and behavioral problems are simply beyond her control…they are not chosen, not deliberate. We cannot expect the person with dementia will be able to adapt to our standards and rules.
This, of course, means that if a connection is going to occur, it is up to us. We will need to make the adjustments necessary to bridge the gap between ourselves and the person with dementia. But how?
For over 20 years, I interacted with persons who have dementia and paid attention—looking hard at my interactions with each person with dementia for the ways in which she had been affected by me, by others, and by the world even as she progressed through the disease. Each person guided me during all of the connections and disconnections back to six basic concepts that we have been taught by religious and spiritual traditions throughout time—concepts that help us bridge personal barriers and create genuine shared relationships. I have listed the concepts not in order of importance necessarily but in a way to create the easy to remember acronym, IF LOST:
• Intend a connection – Check to see if you are ready to connect and allow your gremlins (the inner messages and persistent thoughts that block connections) to take a coffee break for the time you are with the person. Focus on how you present yourself. The goal is towards a respectful, open, attentive, nonjudgmental relationship.
• Free yourself of opinions/judgments/expectations – Try to relax your hold on personal mind-sets that create logjams in your interactions with persons with dementia. Learn how to live with not having all the answers; open to entering the other person's world. Stretch beyond your personal boundaries, pay attention and allow the person with dementia to provide guidance.
• Love – Love and all that it brings with it—respect, honor, fondness, devotion, admiration, positive treatment—is the core energy of the rhythm of human connectedness. Interacting with a focus on loving helps dissolve the games and the usual patterns of interacting. It allows you to communicate nonverbally that you honor, respect and accept the person with dementia in whatever way he or she manifests.
• Open to being loved – Acknowledge his or her gift and open to receive it. Allow the person with dementia to experience the joy of being able to have a positive impact on you.
• Silence – Allow yourself to be comfortable with inner silence and enter the other's truth. Allow the connection to unfold. Develop the art of "being with"—truly notice, listen and pay attention in the moment. When we recognize the core emotion of her story, authentically identify with some aspect of her experience and reflect that back to her, we close the gap that separates our worlds; the person with dementia is no longer alone. Each of us feels seen; each of us is more able to act and move into the present moment with the other.
• Thankfulness – Expressing gratitude to the person with dementia for the benefits you received during your interactions can be powerful evidence to her that you received the gift of her sharing a connection. At minimum, she feels good because she was able to help you feel good.
These simple concepts help translate what the heart knows into a logical, easy-to-understand form in the real outer world. Internalizing them has empowered hundreds of caring family, friends and professionals to emerge from challenged, frustrated and fearful interactions into real, shared connections with persons, regardless of how advanced the dementia.
I began my work as a social worker knowing that my opportunity was to be present with persons with dementia in such a way as to encourage each person to continue to participate in life. I found in the process that I also was participating in life more than ever before. This has been the beauty of connection for me—each of us was able to see the other and feel seen by the other; each of us moved beyond isolation; each of us was empowered to move forward, to grow. We have guided, encouraged, inspired and accompanied each other in connection—with ourselves, each other, the world around us and the expanded field of energy. Each of us transformed in the single moment of connection; each of us changed in the most miniscule and grand ways forever.

Sara’s life was a weave of tragedy, hardship and grief. Her entire family—parents, aunts, uncles, cousins, husband and children—were wiped out by the Holocaust. We learned from a close friend of hers and from a previous social worker, that she came to this country with two dresses to her name. She worked hard throughout her life, scrubbing floors to make a subsistence-level income. Sara would not remarry—she knew she could “no longer bless a marriage with children,” as she had said, so she had closed herself off from relationships with men. By the time she arrived at my facility, the obvious signs of a traditional beauty had long since faded, and Sara’s dementia had progressed to the point where she was totally dependent on care professionals for everything. At best, she was able to have one- or two-word interactions with others. All day long, she quietly sat in her wheelchair with hands gently folded on her lap.
We never could have predicted how being with Sara and watching her interact with her world would be an extraordinary gift. The simplest things filled her with joy. One day, a tiny spider found its way to Sara’s arm and caught her attention. She gazed at that spider with childlike wonder and concentration, widening her eyes with delight each time it shifted direction. Other days, she immersed herself in the flower-pattern of her dress and traced each flower with her fingers, delicately admiring their beauty. She responded to each spoonful of the pureed food we gave her to eat with an “Mmmm” and a gentle, savoring smile. And even during very brief contact, Sara still looked deeply into the eyes of her care professional, smiled and said, “Thank you.”
Sara was my guru; she taught me to open to the beauty of slowing down, and actively appreciating the world around me. I had read about people living a life of gratitude in works by numerous psychologists, philosophers, and modern theologians; but before Sara, I had never actually seen it in action! None of my early role models ever slowed down because to slow down would bring on self-absorption and misery; to fully take in and appreciate my surroundings would compromise my protective barriers and the likelihood of survival. I learned, as too many of us do, to keep very busy, to be driven, and to strive for perfection (whatever that is!)—certainly not to take time for reflection. The deep inner peace and attitude of gratefulness which Sara embodied and the sages discussed were so compelling to me—I wanted some of that!
My occupation as a medical social worker, which allows me to fully participate in the life experience of persons with dementia, is an enormous blessing. The work gives me innumerable opportunities to practice living in gratitude. In order to connect with each person, I have to relax and be present—with my mind and my heart—in each moment. Interactions require me to be more receptive to hearing, feeling and understanding different perspectives. Each day I am taught again to stretch beyond my ordinary abilities and to watch and listen for clues to the real experience of the person with dementia. She guides me with reactions and, at times, blunt feedback to push beyond my narrow, singular perspective. As a result, I am more self-aware, more humble and much more respectful of the person with dementia and her tutelage. Each interaction has become a glorious opportunity to remain fully present in the moment and to experience compassion, love…and, yes, profound gratitude.

(This is a story from my book entitled "Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia." Reprint permission is provided by me, Nancy Pearce--I have exclusive copyrights.)

Ida, as her daughter described, had “The prettiest smile, the most joyous laugh.” So true! She just lit up the world of those who could really see her. Ida was still able to walk with some assistance, but her ability to put words together and to communicate thoughts had been severely compromised. Within a relatively brief time frame, her words were not able to be understood at all. Every verbalization was forced out with a strain, syllables mixed around into nonsensical sounds. Yet every attempt was filled with intent and passion. It felt as though whatever was being communicated must be very important to Ida. So, of course, it was important for someone to listen.
I was Ida's social worker. Each day I invited Ida to join me for a walk. We walked arm in arm through the nursing units on the second floor, the administration offices and back to her unit. All the while, Ida talked. Some days I could not understand any of her words and I learned to ask if what she was talking about was good news or bad news so as to respond appropriately throughout our walk. I would say, Ida, is that OK for you? She would either respond with shaking her head “Yes” and give one of her great smiles, or she would look at me as if I had just flown in from Orion. Whatever her response, I followed her lead. We would then proceed down the hallways with her talking away and with me periodically providing joyous responses or empathy and reassurances. Every day Ida was able, we walked the loop and talked. For almost two years this continued—each of us appreciating our time together yet I still understood neither the content nor the importance of her words nor why our walk and talk seemed so important to do. Then one day, during one of our walks, Ida stopped, turned fully towards me, held both of my arms, and said,
“I love you. You treat me like such a person!”
She then turned and continued walking while speaking her non-discernible language.
I was stunned. In that one moment, the two of us went beyond the nuts and bolts of ordinary communication—the frequently predictable patterns of statements and responses that move a conversation along between two people. Ida expressed that she felt that I was truly seeing her as a person during our interactions and in that moment I felt Ida was truly seeing me. We were two persons sharing a mutual experience of appreciation and validation for simply being ourselves. In that one moment, Ida taught me the importance of our time together. I realized then that what is helpful to anyone with dementia is to connect with each as a PERSON, rather than as someone with dementia, someone with a deficit, someone who is not whole.
We all, as human beings in this world, need to be treated like a person—to be seen, heard, honored and appreciated by another human being—to feel a part of the flow of the intangible gifts of humor, wisdom and understanding found in the person-to-person connection. Dementing illnesses do not alter this very basic human need. The person with dementia always retains the ability to feel the joy and satisfaction that comes from being in the rhythm of human connection. It is our responsibility to find ways to enter the person's world and share all there is about being human, in the most miniscule and grand ways.

(This is a story from my book entitled "Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia." Reprint permission is provided by me, Nancy Pearce--I have exclusive copyrights.)

Almost fifteen years ago my mother was diagnosed with Alzheimer's disease. I was eighteen and she was in her fifties. I recall her starting to forget little things around the house; key ingredients in her gourmet recipes, friends' phone numbers, and every day tasks, such as where to put the ice cream. It was not uncommon in our house to open the refrigerator and find a dripping carton of Breyers Mint Chocolate Chip. She was having some problems with finding proper nouns and would make light of it. You know pick up the "thingy" please,and she would chuckle and make a face. We would often drive the "long" way to the grocery store "just because she felt like it." I was worried, but not that worried because she assured me that it was nothing. She was going to see a specailist to see what was wrong, and we were going to fix this. After all; it could't be that serious because she was only 56 years old, and she was just having some 'little' problems. After many tests, and a few neurologists later, we finally had the diagnosis: early onset Alzheimer's disease. This was scary; we didn't know what to expect, and not much was known at this point about the disease. I went away to college, and in my self-centered teenage way, let my father handle all of the changes going on at home with Mom. At each break and holiday something else seemed to slip away from my mother. One Christmas she came downstairs wearing her sweater backwards, and insisted that it was on correctly. The next summer saw more changes; her eating habits changed and she became focused on only a few favorite foods, easy for her to still prepare. The next year she stopped wearing make-up, and took less and less interest in her appearance. She lost her glasses numerous times, and began hoarding things. My dad finally had to take her license away after she failed to look when pulling out of the driveway, and smashed up the family car. No injuries to anyone, this time, but that was a very difficult step in their lives. It meant that she was really progressing in the disease, and losing her ability to function independently. I graduated, came home, and decided to postpone the after college job search, and help my father care for my mother full time. My other siblings were spread across the country with families and jobs, and being the youngest of four meant that I had to step up to the bat. I was 21 and knew very little about anything, especially this complicated brain disease called Alzheimer's. So I started doing my research. Mom was put on Cognex, a first generation dementia drug that did little for her memory, and had a lot of unwanted side effects. The Alzheimer's Association sent me a packet of information, and a list of some suggested books. My dad and I read "The 36 Hour Day". It helped a little, but, to be honest I wanted answers, and I really wasn't getting any. It seemed as if were were all alone, the three of us,on this twisting turning path called Alzheimer's. It was a runaway train, bent on a full course of destruction. Taking with it my mother's mind, and personality, my father's patience and love, and my whole universe. Mom lost more and more every day. There was no more going out to lunch for us because she often forgot what to do, and became very agitated. One time at a local restaraunt we ran into two of her old teaching friends. They greeted us warmly, and asked all of the usual 'how have you been' questions. She just smiled and nodded her head and looked at them blankly. I apologized profusely, and felt extremely embarassed. She looked fine on the outside...why could't she just act normally? It took awhile for me to come to grips with these feelings. Now I know that she couldn't help what was happening because of her progressive, fatal, brain disease. Ensure health shakes became a staple in her diet, and she became incontintent. I remember showering and changing my mother,and thinking; she did this for me as a child, and now I am doing it for her. Sometimes the circle of life is not kind. She began mixing up her days and nights, awakening my father and I several times a night. Her mood changed with the time of day,and she was extremely bad in the evening. I found out that this was called 'sundowning'. Very common in those affected by Alzheimer's and very difficult for caregiver's. We needed help, and turned to In-home caregiver's. This did help relieve my father and I for awhile, but there were always hiccups. A cargiver would run late, or not show up. I lost several evening waitressing jobs for these reasons. I could't leave my mother home alone, and my dad didn't get home from the office until 5:00. So I would wait with her, and call in to work. Employers can only take so many excuses, so many times. The final staw came when mom fell at home, and broke her collar bone. My parents lived in an old farm house that they had dreamed of restoring together. This old house came with many difficulties as her disease progressed. She now needed help on the steps, as her spatial reasoning started to go, and it became harder and harder to get her to step over the tub wall to give her a shower. One afternoon with my father, myself, and a cargiver in the house, mom missed the step in between the kitchen and living room and fell. This prompted a trip to the emergency room, and called for a real change. We could no longer care for mom at home safely. We looked at nursing homes, and chose one that we liked with a secure dementia unit. Along with our relief at her being cared for safely, came tremendous guilt. This is a very, very common feeling for caregiver's I found through the center's Alzheimer's support group. I felt as if we had failed my mother. Every time I visited her, I would leave in tears. My father rarely visited, except to bring her 'supplies'. New sweat suits, adult briefs, and other necessities. Life on the outside of Alzheimer's went on for us. My dad slowly put away some of my mother's things. I married, and started a family. We got busy living, while my mom slowly wasted away. She stopped talking, and then walking, and eventually needed to be fed a pureed diet for all of her meals. She slept most of the time, and in the last year of her life, I rarely saw her out of her bed. Eventually she developed pneumonia, stopped eating, and past away with my father, myself, and a priest by her bed side. That was almost four years ago this March 13th. Alzheimer's has touched my life so deeply, and in so many ways that it is hard to try and put it into words. I am a better mother because of caring for my own mother with Alzheimer's. I have more patience, and I have more maturity. I also have a career and a cause because of this disease and my mother. I am the Marketing Director for Arden Courts; a wonderful Alzheimer's Assisted Living that is designed specifically for those suffering from the disease. Each year we raise money for the Memory Walk, and my co-workers, and my family and I walk for our residents and our loved ones. A friend once asked me what I would do if Alzheimer's were cured; after all,I would be out of a job. I told him that I would celebrate.

Julia's Voice

(While I am currently living in Fl, this story takes place in Pennsylvania.)

My Mother, Julia Wilson, left this world on August 10, 2008, following a battle with Alzeihmers Disease that encoumpassed two states and 3 facilities. Both this disease and the services provided to care for the elderly with dementia changed my life. I now have a new direction and mission.

I have always worked with youth; I was a teacher, principal, and regional administrator. I received state and national awards for my work and dedication for children. I was used to making sure special education students received good services in a least restrictive environnment. I advocated for those with mental health and drug and alcohol issues. Yet, nothing prepared me for what I was about to witness.

For the past three years, I have been and I still am "Julia's voice".
My journey began when Julia could no longer care for herself. After using an agency provided by the Area Office on Aging to come into Julia's house, we opted for an assisted living facility.
Julia just couldn't understand why so many different helpers came in her home. "What were they doing in MY house? I don't trust them." Every week, it was a different face and a different voice. I couldn't understand why they wouldn't send the same person. Don't they know change is difficult for alz patients?

After several months we decided to try an assited living facility. Having been a school principal, I was used to researching before I made decisions. The facility we chose was pretty, clean and had good food. I visited almost every day. I noticed: The nurse at the desk never smiled. She didn't talk to family or residents much. She just told them when it was time to take medicine or go to dinner or bed. In fact, her voice tone was rather commanding. Doesn't she realize these elderly people all have rich histories?
Does she know that many are lonely and can use a friendly person? In spite of this, Julia adjusted well.

One day a man came to the dining hall in his pajamas; the aide scolded him and then looked at me as though to ask me to join her in laughter. I didn't laugh; somehow it just wasn't funny!

Another day, an aide told me how Julia blamed others for taking her teeth. The aide knew the teeth were in Julia's room so she made her walk back from the dining hall before dinner to get them. Didn't she notice how much Julia's knees hurt from the arthritis? Did anyone train the aides in communicating with persons with Alzheimers. I suggested that the aide read the Twenty-four Hour Day.

I began to wonder: "If I treated my special education students the way they treat the elderly, I would be in big trouble. Advocates would be everywhere. Where are the advocates for the elderly?
This disability is so similar to a child with special needs. I called the Mental Health Society...no advocates for the elderly. Wow!

After one year, I decided to take action. I volunteered to provide communication training to the staff. The director loved the idea, especially since I could mobilize several colleagues to help and not charge a fee.

Two days after my good will offer, the facility doctor called to tell me Julia may soon need a higher level of care that they can't provide here. He re-evaluated my Mother at the recommendation of the head nurse.

Wow! I had visited all week and saw no change; I have a background in diagnosis and referral for mental health issues. It was evident to me that I offended the head nurse by offering to train her staff. I didn't know she had such an ego. When I disagreed with the facility doctor, the head nurse had the staff psychologist call me to say Julia was "potentially violent". In all my years with mental health work, I never heard that term. I asked what she did to make him say that. He had no documented incidents. Neither did the facility. Julia was about to become the victim of discrimination, and they woukld contribute to her decline.

I waited; I watched and I documented. A month later, I recieved the call; Julia had to leave. She needs a nursing home; yet I saw no decline yet. I am of the belief that the elderly also deserve the least restrictive environment. I produced my documentation. All month, I had been asking staff if Julia is still appropriate here. They all said "yes". I showed the director my documentation. He decided to call the Office on Aging to do an objective evaluation of Julia. They came and asked me who I "upset". Julia was definitely appropriate for assisted living and not in need of nursing yet.The Office on Aging Representative told the head nurse she needs to keep records if she is saying someone declined or was violent. No such records existed because these were not facts. Not long after, the dreaded letter came; they kicked Julia out.

This was the only time in my life that I was fighting depression. I couldn't sleep; I cried easily. My Mother had a fatal disease that so many people did not understand; and I,the 1987 Woman of the Year for Beaver County; I, who helped so many others, was helpless. I, too, was a victim. I prayed daily. I told God I don't know hat to do; please help me.

I had to begin the search for another assisted living facility. The office on aging could have tried to reverse the decision, but the evaluator said, "Would you really want to keep her here?"

I was so scared. I knew that this change would be so difficult for Julia and may cause a decline in her condition. I had no choice.
I called the Alzheimer's Association. They couldn't help my situation but here were some bills pending for oversight of assisted living facilities. I met with my state legistator to advocate for the bills. I cried often.

Our next assisted living facilty had a locked unit. Julia never wandered, but they put all the alz.residents there. Many of them were more progressed than her. The staff was more humane; I still wandered, where is the least restrictive environment? Where are the stimulating activities? TV just doesn't do it. Both facilities had compliance activity calendars, but not much in action! Don't they read the research?

Julia cried daily for one month. She didn't understand why I took her out of the other facility. She blamed me. I never told her they kicked her out. I wondered about the others who did not have a very involved caretaker. How are they being treated? Are they thrown in nursing before it is needed?

If Juia could communicate better, she would have asked, "Why did you do this to me? I did nothing. Do you not know how hard it is to loose your ability to communicate? Doesn't anyone care? Why do you make me go to bed at 6:30 if I am not tired? Could it be for staff convenience?"

After one year, I moved to Florida and took Julia with me. Things were better. Her memory wing had no desks. Staff was required to interact with the residents. All the aides were trained in Alzheimer's Disease. They knew how to communicate and to redirect the residents. Still, there were not enough activities. I kept taking Julia out. We strolled the beach in a plastic wheelchair, ate lots of ice cream and clapped to the music at the outdoor concerts. Sadly, none of the other residents got to go out. Why?

This disease robs people of their voice. The thoughts are jumbled in their heads. We must be their voice. My life is changed. I intend to be that voice for all the people suffering from that disease. I live in PA in the summers. "PA, I have only just begun to advocate."
I am "Julia's Voice."

Thank you for this opportunity. I hope to write more..perhaps a book one day.

J.J. Russo
Credo One

I believe in memories.
My Grandfather lost his. He tried very hard to keep them, to hide the loss from everyone, to still be the boss at work and at home, but he lost his. As I became a teenager, so, I guess, did he. As I got older, he lost years. A bald, freckled head with the mind of a child; Grandfather faded fast. His three daughters, who were not his three sons and could not carry on his family name, moved him back east. Where the provider and protector would be protected and provided for. Loving deception, they said.
My Gramma never lost hers. She always remembered everything, always had a good story. She was always herself.
For months, Grandfather lived in Gramma’s house. Once their house, now their house again.
“You divorced me,” she told him. He denied it.
He didn’t believe it.
She showed him the papers.
“No,” he said, and explained as best as he still could: “She wasn’t a good one.”
Everything was a one to him now. A good one or not a good one.
Gramma was a good one.
He took her picture. He took many pictures. He took hers again.
He watched shadows, light and colors, and she watched him.
Winter turned to spring. They sat and ate together. They talked easily and often. I believe she played him music. Maybe they danced.
I believe in forgiveness, and not in forgetting.

Patient: Lula B (deceaded 2004)
Caregiver: Pearl, Daughter

September 1999 I informed my employer I would retire June, 2000, not realizing my mother would get sick. Until that time she appeared to be in pretty good health, she was never hospitalized and had no major illnesses. In November 1999 she had a virus for a few days and I took her some soup and medication for her cold. She struggled to open the door because she couldn’t remember how the security lock worked. From this episode she was hospitalized for the first time and very confused. I stayed with her night and day because I was concern to see her in this condition. The Social Worker at the hospital gave me a business card and strongly encouraged me to use it. The card was for the geriatric department to further have her checked for dementia.
Mother was released from the hospital and I stayed at her apartment for two weeks until I could arrange for someone to stay with her. One of her friends stayed with her three months, I took a family leave and encouraged her to come and live with us, she didn’t want to at this time, so I encouraged her to come and stay a few days. She liked being with us but didn’t yet want to stay with us. So we put that on hold and took her to Sinai to check out the confusion. Her first visit to Sinai, she was diagnosed with second stage dementia and we were told she shouldn’t stay alone. She kinder understood not staying alone but not ready for it so we kept the apartment two months and one day she told me to put her furniture in storage. She authorized me to pay the storage bill. The furniture was in storage for one year and one day she said, “Get rid of that furniture I don’t need it”.
After getting settled form the hospital stay and the onset of dementia she liked staying with us and we liked having her with us because it was easier for all of us. Now it was time to think on the next step to help me have time to do everything.
August 2000 I suggested the Adult Day Care program to her, she wasn’t interested because she wanted to lounge and stay in her duster and house shoes all day. I finally convinced her to go and see the center, she agreed. She liked the questions the Day Care Director asked her about the work she had done before retiring. She had worked at a hospital in the laundry department. The director told her you can help us, and she did. She love folding towels and saying how pretty they look. The Day care was a life saver to help me get everything done. She attended the day care almost three years. She was hospitalized three times during this time.
During her better times in the four years, we attended worship every Sunday morning for about two years, it became a little difficult and we attended the evening worship. During the four years we also went to our family reunions in Iowa, Mississippi and Illinois and we went to the Ladies Retreat in Fox Valley and Lake Geneva.
2004 was a trying year, hospitalized, therapy and feeding her for a while. It was time to make another difficult decision. We tried her in an assisted living facility and that lasted for three days and she had a heart attack and hospitalized and we left there and went to the nursing home for three months.

Taking care of my mother was a humbling experience, because I didn’t know anything about dementia. I used the suggestions from the health care professionals. The Adult Day Care Center introduced me to the Support Group, Safe Return and the Alzheimer’s Foundation. I’M grateful for the knowledge I gained and the support received for my mother to give her the dignity she deserved through this difficult time.
With my husband being diagnose with dementia I’M feeling less stress because he realize he has some memory adjustments. We are talking about some of the situations to get through. Example he doesn’t want the responsibility of the check book, realize he is not sure of his driving, and I discussed Safe Returned with him and he has agreed. He also stopped teaching classes at our church because he said a few years ago something was happening with his memory. I didn’t take it too serious because he was functioning well. This year I see more signs so I’M paying attention. Some of the recent signs are falling and anxiety. But since he is now taking the medication he has more interest. I’M working at keeping him involved, example we are planning to attend a marriage retreat through our church, visit grand children, attending a Bible class on Saturday mornings. He is also working at taking short walks. Had a knee replacement approximately two years ago and having some stiffness but trying to work through it.
I’M grateful to the Day Care Service facility for telling me about the Alzheimer’s Association, and I’M grateful to my husband for his patience and understanding of her condition. She would get out of her bed on the floor and couldn’t get up and he would lift my mother back into the bed. When she wanted to go home he would take her riding in the car and ask her how to get to her house, naturally she could not tell him so they would ride around the block and she would get tired and they would come back to our house. The ride satisfied her for a while. She went through a stage where she would lock her bed room door and couldn’t figure out how to open it. We tried to put fear in her by telling her we would take the door off if she locked herself in the room, but it didn’t work. The Day Care Center told us about the Chime equipment for the door. It worked and we removed the lock from the door. She would look at it and try to figure out what and how it worked. We were relieved!!
Do all you can to help the Alzheimer patience maintain a quality of life to keep them calm and an appreciation for life to keep them happy as long as possible, because as time passes nothing seems to matter.
I thank God we were able to help mother through this journey and not rush her to the nursing home.
Now I’M trying to give my husband the care he deserves, he is a Christian man, and he loves the word of God and has a good attitude so far, but now having a few down days.
We have faith in God that he will direct us through this trying time.

thank you

I'm not sure that is what you're looking for. Seeing my neighbor and his son playing ball in the yard last week brought back memories of my dad playing ball with my brothers and me. My dad, who is now 93 and living in San Antonio, has Alzheimer's.

This originally appeared in the Star Beacon (Ashtabula, OH). www.starbeacon.com.

A Tom Harris column: The mind’s still the best of all scrapbooks

TOM HARRIS
Star Beacon

There was a little preview of spring Tuesday.

The sun was shining, the temperature was in the 60s and the breeze was gentle. There was another harbinger of spring that afternoon: the fellow next door and his son were out with a bat and ball.

It made me think of my dad. Long ago, during Eisenhower’s first term, he and I, and later my brother Ed, would get the bat and ball and walk to the playground at Bethel Memorial School. By the early 1960s, Dad was also playing ball with our younger brother Jim, but we had moved and the venue had changed.

In any event, Dad pitched the ball, and I tried to hit it. Listening to the neighbor, I heard my dad. The fundamentals of hitting haven’t changed much. I watched as the guy next door stood behind his son and reached down to move young boy’s feet, so that when he stepped into the ball, he’d step toward the mound.

“Get your bat up,” he said. “Get your bat up. That’s it.”

Then the little boy took a few swings.

“You’re taking your eye off the ball,” the neighbor said. “You’ve got to keep your eye on the ball. You’re watching everything but the ball.”

It could have been a recording of Dad talking to me all those decades ago. Then the boy next door made contact, sending the ball back through the box, as they say.

“That’s the way. That’s the way you want to hit,” the neighbor said..

Dad used to say that too, although not very often. But that was my fault, and the reason, Dad would tell me, was I was had my foot “in the bucket.” The neighbor didn’t have to tell his son that, which bodes well for the boy’s baseball future.

About 15 years ago, I read one of George Will’s baseball books, I think it was “Men at Work.” Early in the book, Will told of his father taking him to Forbes Field to see his first Major League game. I’m not sure what grade I was in – probably third or fourth – when Dad took me to see the Pirates for the first time.

I don’t recall what the occasion was, but we were downtown, and he asked me if I wanted to go to the ballgame. “Sure.” So, we caught a streetcar and headed out to the Oakland section of the city. In his book, Will writes that he was struck by how green the grass looked as they walked into Forbes Field.

I don’t think I’ll ever see grass as green as the grass in the outfield that night. More amazing yet were the lights. When the sun went down, it was still daylight on the field. I couldn’t believe it.. I’m not sure who the Pirates played, but the Buccos won with the help of a Dale Long home run.

More recently, I thought of Dad while reading David Maraniss’ biography of Roberto Clemente. In the chapter about the 1960 World Series, Maraniss talked about Pittsburghers taking the streetcar to the games.

Dad never drove. So, by necessity, he became an expert on public transportation in Pittsburgh. He passed some of that knowledge on to his sons, and we were able to get to the ballgames on our own long before we learned to drive.

“Going out, you can take any car with a number in the 60s or 70s,” Dad told us. “Coming back, you can take anything coming down Fifth or Forbes except the 77/54.”

If we took the 77/54, also known as the Flying Fraction, he warned us, we’d end up taking a long, slow trip to the North Side, which wasn’t where we wanted to go.

The last time Dad played ball with his three sons was on Christmas Day 1996. We were all in San Antonio to celebrate the holidays and my parents’ upcoming 50th wedding anniversary. That morning, Dad found a football and told us to get outside. As he had done countless times before, he motioned for us to go out, and then he delivered the ball to each of us in turn.

“If nothing else, at least you guys catch the ball with your hands instead of your bodies,” he said as we went back in. “I guess I did teach you something.”

Dad is 93 now and much more spry than I am. He doesn’t remember much anymore, but I do, especially on spring days when fathers are out playing ball with their sons.

Harris is a freelance writer from Ashtabula Township. Reach him at tharris508@yahoo.com.

One of my dearest gal pals, Evelyn Huffman, was 91 when we became fast friends. I was 42 at the time and had been invited by Evelyn's daughter Pam (a friend of mine for many years) to stop by her mother's house twice a month to tidy up and check in on her. This evolved into Evelyn going out to lunch with me weekly. She was the sunniest, funniest, best-listeningest person I knew. And, a woman cut from my same cloth, she would shamelessly flirt with restaurant managers and/or business owners. Everyone loved her.

When I met the man who was to become my husband (Anthony Kaczor) and introduced him to Evelyn, she adored him instantly and said sadly, "I probably won't live long enough to see you two get married." Deferring to the wisdom of our elder, and, this being a second marriage for both of us, we knew there was no real reason to postpone the inevitable, so we planned our wedding for three months from then. At the wedding, Dec. 21, 2004, we hammed it up in photos with Evelyn, each of us sticking out our tongues at the other. The shot captured the inherent goofiness of all three of us amigos.

A year or so later, Evelyn became more and more forgetful. I'd notice her lose the ability to perform small tasks like inserting a key into her door's lock, not out of a physical incapacity but because she couldn't remember how they went together. Words were increasingly difficult to find as she tried to communicate with us. Soon after, her needs became such that her adult children decided she had to be moved to a nursing home for supervised care.

Shortly after that move, Evelyn lost more of her memory more quickly and was transfered to the locked Alzheimer's unit so she wouldn't wander off. In no time at all, she couldn't remember us. When we'd come by for a visit, say, on each of her subsequent birthdays, you'd see confusion in her eyes as she tried to recollect our faces. She could assess immediately how nice she believed us to be, but that was about all. By the time of her 96th birthday in November 2008, she just smiled, extended her hand and said lightly, "Whoever." We all laughed, Evelyn included. She had accepted that that part of her would never function for her and chose to laugh rather than cry over the loss.

This "Disease of the Living Lost" (as I think of it) claimed her life in February 2009, and my husband and I just hosted an Alzheimer's Fund-raiser last weekend called the Geezer Gala in her honor. It was a '50s-style sock hop and when my husband carried in the root beer keg for the making of floats, I knew Evelyn's spirit was with us. The brand happened to be hard-to-find Frostop, a brand I hadn't had since my childhood when the Frostop Drive-in Restaurant existed—with one exception. It was the only root beer Evelyn ever served and the last beverage we shared at her home.

Evelyn was as rare as that root beer to me. I dearly miss my friend. We all do.

Liz was called Liz by her sons and her grandchildren. To me she was sophisticated, elegant, and intellectual. She was intellect mostly. I felt her affection as cool and distant. She would tell me what I thought and I would attempt to correct her and brought every brain cell I could muster to bear on our debates. Dementia changed everything. Somehow I knew it was time to listen gently without trying to find the flaw and to let myself respond spontaneously as if I understood. We spoke in metaphor. My mother read poetry to her and that became our form of communication. She sometimes startled me with questions that led to deep reflection. "Are you preparing?" Most miraculous was her change of heart. What used to be hidden and chilly transformed. It was, "How wonnnnnderful to see you. You are so beautiful. I'm so happy to see you. I love you."

My 91-year-old father has had vascular dementia (usually identified as Alzheimer's by most) since 2000. After failed attempts at housing my father in various care facilities -- assisted living, then a nursing home dementia ward where they would only keep him if he was drugged due to his agitated behavior--I took him into my home and have been caring for him for the last 8 months. My father no longer knows me, rarely recognizes my mother and mentally lives in his early memories. I'm 48 and single and have given up my job to take care of him; though I did not realize I was giving up my financial security at the time I made the decision. I just felt I needed to try to find some peaceful place for my father to live out his final days. I wanted to give him what I would want for myself or anyone else I loved. I know unconditional love is necessary if you care for a person who is -- in many ways -- no longer the person who raised you or who you remember. Your own memory is challenged as you care for a stranger and must meet them as they are today. Sometimes I succeed; often I fail but I keep trying.

The most difficult aspect of taking care of my father is that we are "Invisible" to others. Friends, relatives, even my mother and other siblings, keep their distance. No one wants to "see" him in this state (he is healthy other than the dementia). It is certain most of my friends are frightened by aging and death. Our angels have been a few home care aides and a paid part-time caregiver, who keep us upbeat.

I think it is too soon to truly understand how this disease has changed my thinking about life, love and memory. I know it has challenged me more than any other life experience. Though my father no longer differentiates me from a paid aide I believe it makes a difference in what I am doing. I have been shocked at how few are willing to even consider caring for their parents and assume the job should be done by others who are paid so little to do so much. While many are wonderful at caregiving, I have had the nursing home experiences that are a reality -- the walking down the aisle and feeling guilty for walking past a woman screaming "help me" and being told by a worker, "oh, she does that all the time." I understood then that when my father cried out, there would be no answer, too. Nursing homes put our parents into wheelchairs and drug them with anti-psychotics so they cannot move, they cannot be aware of their own existence. Even if they cannot remember, is that better, more compassionate? We convince ourselves, I assume, that it is. We refuse to acknowledge a major social and life responsibility of caring for the elderly -- and now it is intensified by the fact that our parents are living longer and many have Alzheimer's and dementia. Our consumer and capitalistic society teaches us to get rid of what we don't want or what we feel is no longer useful. We want to throw away our elders but since we cannot physically do that we instead turn our heads, look away, sign a contract for some healthcare organization to take care of them. Usually the facility is miles and miles away from where we live. We pay our respects a few times a month or year; we tell ourselves it is okay since they don't know us anymore.

-- Moments after I wrote this as I was feeling a distance, being able to speak politically, I was pulled back into the present where there are no politics, only reality. I could not get my father up and to the commode in time, so he pooped all over himself, his clothes (he wears Depends too) and my living room rug. This is the side of caregiving that keep me real. No one can escape the physical and seeing one's father helpless, embarrassed and ashamed that he cannot care for himself is sad, but it also acknowledges his humanity, his existence, and makes us more human.

How has this disease changed the way I feel and think....that's a very good question. Right now I am the 56 year old daughter who's mother, 78 years old, is suffering from the disease. My father is still living and very active for the age of 83. My mother developed this crazy disease 4 years ago. Mom was always a very out spoken, verbal woman. The disease has intensified these traits in her and I must say, you NEVER know what is going to come out of her mouth. She now loves to use every four letter word known to man. My father and I were her sole caregivers at home for the last year an a half. It finally got to the point we could no longer provide her the care she needed. My father made the heart-wrenching decision to place her in a nursing home last August. After living, sleeping and eating together for 61 years, he is still trying to deal with the separation. It's clearly worse than death. To see her gradually get worse day after day is difficult to say the least. I wish I could say that mom is a sweet,kind, loving person right now, but the truth is, she is very paranoid, angry, and most of the time agitated. The nursing staff has to keep her medicated to calm her down. I do have to say, my opinion of the nurses and staff are fantastic. I don't know how they do it. They are very aware of the disease and are very loving and kind to all the patients. Mom does have good days. She seems to be very content and happy. She has developed friendships with some of the other patients. We do have visits that are good. We just act silly and laugh together. I do treasure those times. On a positive note, I know my father and I have developed a closer bond and are able to talk and vent to each other. I just try to enjoy every minute with him that I can, knowing that will end some day, too. I am guessing we have several more years of watching my mother fade away. I just wish I knew what she was thinking and how her mind is really working. Be be so confused all the time, does she know? Of course, I feel guilt. Could I have done something more, can I still do something more to help her? As alot of people say, "the disease is sometimes harder on the family and caregivers than the one with the dementia." Mom never accepted the determination of her having Alzheimers. She was always very scared and in denial. I can only pray that if I am afflicted with the awlful disease that I will have the sense to seek help early and fade away graceful. I have truly enjoyed and somewhat sadden by everyone elses stories and experiences. They have made me feel not so alone. Thank you all.

My father, Gordon, will be 92 on May 31, 2009. He has late stage Alzhiemers and is slowly being sucked away from himself and his family. Ironically his health is great for his age minus the Alzhimers. I live in NC. He now lives in a facility in VA near my brother. We go and visit him once a month. If we are lucky he will nod yes or no. He will laugh but most he sits blankly looking through us and seeing nothing. He lived with me for awhile until it became to much a burden for himself as well as for me. He started to see my Mother (whom was dead) in the dog crate and gave her water with a straw because "she was thirsty" as normal as telling me that it was sunny outside. He would dress up in his tie and jacket to go and sell restaurant equipment in Miami FL as he did 50 years ago except it was now and not then. He drove to a doctor appointment at 10pm so sure it was 10am and when questioned about the darkness of night he would say it was "just cloudy". He was always so full of life-always a corny joke "did you ever see a cigar box". What a character, he has now become turned inside out. A shell-cracked like an egg-slowly the insides seep out. To slowly for me.

I am my mother's caregiver. She lives in a secured dementia unit nearby and I've been caring for her for the last 2-1/2 years. I also have a 3-1/2 year old son so I am very aware of being part of the so-called 'sandwich' generation. I find it very challenging to be split between two worlds. My son is learning about his surroundings at lightning speed while my mother is retreating inward and losing her grasp on reality bit by bit. She's forgetting how to use utensils, she can't toilet herself and language is an increasingly frustrating thing for her. Fortunately, she is always in a good mood and happy to see me, even though she's not quite sure who I am. Sometimes I'm her sister, other times I am a kindly helper. She seems to know that I belong to her somehow but she's just not sure of the particulars. I never quiz her about it, asking her who I am just seems to put her on the spot and she gets embarrassed. I just accept what my role is for that visit and carry on. One of the surprises that I've discovered about her is that she has maintained her keen observations about raising children. She raised 5 of us and the wisdom she gained from that remains firmly intact.

Some of the best advice I've received as a parent has come from my mother. My son Henry and I were visiting her in the nursing home and Henry was hopping around the room eating my mom's cookies by the handful. I was busy toileting her in the adjacent bathroom so I had to be okay with that. It kept him busy and not too destructive. When mom and I came out of the bathroom Henry had spit out a huge mass of chocolate cookie on her brand new bedspread. She was curious about the gloppy mess, not upset, she just wanted to know what it was. I was trying to remain calm because the food spitting had become one of Henry's annoying specialties and it was currently working my last nerve.

So I tried to explain the situation: "Mom, I don't know why but Henry's been spitting food out for the last couple months and it drives me crazy and I can't reason with him because he's just so flipping willful. What do I do? It doesn't matter what I say, I just can't seem to stop him from doing it." I wasn't really expecting an answer, it just felt comforting to commiserate with another mom.

So I was floored when she simply said, "Oh, you just love him."

That was such a perfect response to a very frustrating situation. Mom wasn't judging me or making overly simple suggestions or blaming the child. She was telling me in simple terms that raising children is extremely challenging and that sometimes there's really not much to do about it but love that child and know that this will pass.

Becoming the caregiver for my mom when I was just learning how to become a mother to my own child has been very difficult on many levels. However, I know that she's helping me be a better person because I am learning about patience and compassion and just loving people for who they are.

My mother suffered with alzheimers and passed away more than 30 yrs ago.I have never accepted my loss because I never felt we had a real goodbye. The understanding of the disease was much different at that time.It was looked upon as mental illness, and treated as such.I didn't get to tell her I loved her, that I appreciated how much she gave to me throughout her life. I didn't ask enough questions about her younger years before I was born. I so regret this.Of course having the possible DNA for Alzheimers, my attention to memory is fanatic and I try to let my children know what I consider the most important events in my life, large or small.So that they hopefully
know me as best as that is possible. I tell my daughter and son to not fret should I lose my way, make the decisions that are best for them at the time with no guilt, they have my permission. I wish them to remember that should the time come, but not a day before. I recognize so much of myself in my mother and I am shocked at how differently I see her. Where I saw mostly weakness I now see her strength,she fought for what was important in her life, leaving the small battles to be lost.The good in me has come from her.

I spent three years using drama and other expressive arts therapies with people with moderate to advanced Alzheimer's and their families in a hospital and nursing home in San Francisco. I was deeply affected by the relationships and in-the-moment experiences, ranging from celebrations, reflections, affections, fears, anger, and grief.

These relationships have increased my overall capacity for Love. I recall a moment ballroom dancing with one participant who looked tenderly in my eyes and said, "I love you." It's true that she may have mistook me for a past romantic partner or chose to flirt with me, but the affection, trust and desire for connection were nonetheless real and the inhibition of the disease allowed her to reveal it. She and I were indeed enjoying each others' company, carefully attending to the gentle sway of each step together, and obviously caring about each other. I had to ask myself, "If this isn't Love, than what is?" What kept me from expressing Love so plainly? Clinical ethical boundaries? It was more likely my own fear of being emotionally connected to those who were suffering, at the end of their life, and mysteriously disappearing with time. Ultimately, I risked loving other families' grandparents, parents, husbands and wives, and shared in my own way the losses when they came. I learned that loving can be strengthened by memory but it is also a flower that can bloom (or wither) in a moment.

Gradually, I came to see my role as one who tends to the various feelings throughout groups or family visits, giving special encouragement to Love. There were often moments like this after more directed activities when a small group would find ourselves silent yet attentive towards each other and smiling. Not a cure, of course, but something beautiful in an otherwise tragic situation.

My colleagues and I based our interactions on a form of drama therapy called "Developmental Transformations (DvT)," which allowed us to use the dynamic flow of attention and memory to engage individuals and relate group members. DvT was created by David Read Johnson whose book "Waiting at the Gate - Creativity and Hope in the Nursing Home" (Haworth Press, 1987) describes his and other creative arts therapists' work.

There is another group that is not represented at all. That group is one I belong to, spouses, caregivers of people with Early Onset Alzheimer's Disease. My husband was diagnosed at 50 with Early Onset Alzheimer's. I took care of him at home for 8 years, along with working full time as a Rector of an Episcopal Church. Fifteen percent of Early Onset patients get Profound Seizure Disorder. He had two Grand Mal Seizures, which, along with our Doctor's insistence, made me put him in a nursing home. I have watched him disappear in many ways and the pain and sadness of this has been profound. He was a wonderful husband and father and to loose him as my companion has been so sad. He is now 60 years old. He never became angry or mean just more and more sweet and gentle, as he always was. He still remembers me, but not many other people. He is not always sure who are children are, but he knows they love him. His gentleness is what keeps us all so filled with awe about his humanity. His love is so palbable. He calls me his "Sweetie" and goes around the nursing home saying, "Where is my Sweetie". They are kind and generous to him.

His memory loss really affects the way in which he relates to those who have loved him, but the memory of the way in which he relates to others is still intact. I don't understand that, so many tell me that Alzheimer patients become angry and combative, he never has. So I think, he remembers how he was and that remembers.

You talked about isolation. I tried to have him in a group for support, but he was so much younger and felt so frightened being in the group. We were so isolated, people stopped inviting us to their homes, and didn't drop in to see us. That is where our humanity is changed. You become alone and when you crave community you are left with such lonliness.

I don't know if my story belongs here, for my mother had vascular dementia, not Alzheimer's--- but where do I go to talk about my experience of taking care of my mother with dementia? So here I am. I have argued with my sister over what this experience was for my mother, my sister insisting it was a terrible and indecent way to die. To be stripped of your self-awareness, of who you, and your loved ones, are. But I am the one who cared for her, and I saw a woman transformed in many ways. As the sadness and regrets of the past and the anxieties of the future left her, she lightened like a leaf, being lifted through each day by the wind. She opened each day like a present, a grin on her face, ready for whatever adventure faced her. The hard times came when my father died and she worried so about leaving him alone after he died. His last words to us were to take care of her. Her last words to him were that she loved him, and would be joining him soon. And I had a brief hard moment when we were having a discussion one day about who was related to whom in the family, and at one point she looked at me so sweetly and said "And who is your mother?" It took my breath away, but then breathe I did, as I smiled at her and said "Well, you are, Mama". She looked at me and grinned in disbelief. At that point I realized that though at times she she knew who I was, and at times she did not, she always loved me deeply nonetheless. As the dementia moved along, and she had aphasia from her strokes, communication became difficult. But never had her heart been more open or her soul shined through so brightly.

It is wonderful to think of the warm-fuzzy spiritual side of Alzheimer's disease but I have a memory that is difficult to live with - and not warm & fuzzy. An acting-singing student of mine, a sweet, beautiful, talented girl, was cast in an important role in a daytime soap. She moved to Los Angeles, got married, had two children - an idyllic life. Meanwhile, her mother, here on the East coast, was diagnosed with Alzheimer's disease, and the condition progressed quickly. The girl's father, the only care-giver, could not cope with the problem: the mother, among other things, seemed to require very little sleep, and she had set fire to the house while the exhausted father slept. My student left her West coast family to come back to assist her father. After, the mother died, the father was also diagnosed with Alzheimer's disease, and my dear unselfish student had to again put her life 'on hold' to rush back and forth from one coast to the other, trying to cope with this new trial. It all but ruined her life. I long to find some uplifting meaning in her noble two-time sacrifice, but all I can see is a terrible waste, a devastating loss, an unmitigated sadness. I feel pain everytime I think of her and in my mind I send her my thoughts of love and my respect, and my hopes that the rest of her life held the happiness she deserved. This happened years ago, and I have since lost touch with her, but I think of my poor student and wonder: what chance does she have with her tainted genetic pool from both parents? I would like to try to contact her again, but I'm almost afraid of what I might find. I don't believe you (or I) want to share this story with anybody else, but when I heard your program, I saw that dear remembered face and felt anew the pain of those years that dear girl spent taking care of the two people who gave her life. I also don't think I should tell a story in which I was only a helpless bystander.

My father died 6 years ago with his memory in tact. It was hard to see him gradually wither & die but "he" was there through it all. My mom however loses daily her touch with who she is, who she was, who I am. When my dad died she could not live alone. I couldn't, just couldn't put her in a nursing home. At age 60 I bought my first house, emptied their apartment, and moved her to my city. She often says she doesn't know where she is, who she is, who I am.

It takes all that is in me to see her like this. Her short term memory is like a shadow that slowly envelopes her then fades. She's 97 now so it won't be too long & her life will be over. The only "good" thing with this for her at least is that she enjoys some of her moments.....like petting my cat Dickens, eating a candy bar, seeing the blue sky. She has enjoyments but sadly cannot remember them 2 minutes later. Alzheimer's is the biggest thief ever.

My grandmother, Mumsy, was my "island." Always sweet, kind, full of unconditional love. She spent almost every day with me as we raised our son, Buddy. She taught me how to bake cakes, walk like a model, and those quips of wisdom that only you grandmother would know. We set tables together at our church for Wednesday Night suppers. One afternoon at home, she said to me, "I can't remember which side of the plate this knife belongs on." Of course, I told her and we went on. But slowly she began to fade away; still remaining docile and sweet. Mama kept her at home as long as she could. Now, my mother has Alzheimer's. Since I watched my grandmother live and die with it, I was quick to pick up on the subtle symptoms in my mother. The day she was helping me set the table and said, "I can't remember where this silverware goes," my heart stopped. Mama got the disease about 10 years earlier than Mumsy. Mumsy was 80 and still driving. She lived to be 92. Mama is now 81 and in the last stages. She is at an assisted living facility. We did not want to move her from home but she began to fall.
How has this changed my life? It has made me wonder ... am I next?
When you are experiencing this with a loved one, you just sort of get on "auto pilot" and live day by day. I think it takes its toll after they pass. You hold up so long (emotionally and physically).

What’s the Emergency?
Elaine Blanchard
1736 Forrest Ave
Memphis, TN 38112

My mother, Lois Eades, has Alzheimer's disease. She is eighty-nine years old. She once taught Creative Writing, Advanced Grammar and Survey of World Literature to undergraduate students at Trevecca Nazarene University in Nashville. She has written several books, biographies and poetry collections. She has taken great pride in her capacity for memorizing scripture, poetry and passages from the classics. She could not be beat at Scrabble or Anagrams. She enjoyed playing the piano. She liked to show-off her flexibility, sitting in the middle of the floor and putting her foot behind her neck; she would grin and ask, “Can you do this?” Of course we could not. She could walk four miles at a brisk pace along the wooded road by her rural home even after she was eighty years old. My mother worked hard to stay ahead and to stay alive in every way.
She is now a resident in a nursing home and has been a total care patient for four years. Anyone walking into her room today would see no more than a small rise under a sheet with a bare bony leg aimed up toward the ceiling. The leg is usually kicking wildly and without purpose. There is a head of perpetually tangled gray hair and unfocused eyes staring upward. Between meals, she chews on her gown, eating holes into the collar and neckline. She weighs seventy-four pounds.
I visit my mother every afternoon. As I walk down the hall, I speak to the nurse who passes medication and I speak to the nursing assistants who clean and feed my mother. I appreciate the constant care the staff provides for my mother. They have no idea what she was like, back when she would have been horrified by the way she looks now. Now her survival depends on the care given by these women who have come into our lives at a time when my mother can no longer hold a conversation with them. She can no longer ask about their families or correct their grammar. I call out, over the roaring volume of the television, “How are you, Mom?” Sometimes she makes a sound that I interpret as a joyful response to my visit. Most of the time there is no response to my voice or my touch.
I brush her hair, wipe her face with a warm cloth and put Chap Stick on her lips. I water the plants in her window. If I fill a paper cup with cool water and put a straw between her lips she will alternately blow and suck, suck and blow. My mother was always so careful about her appearance, even when she worked in the garden. She got her hair done every Saturday morning at nine o’clock. Bob, her hair dresser, was her best friend and confidant.
My mother has severe osteoporosis and macular degeneration. She is fragile and nearly blind. Somehow her left femur was fractured last Tuesday and she was taken by paramedics to the emergency room at a local hospital. I drove my car behind the ambulance. I was told by a security guard as I entered the emergency room, "You cannot go back there with your mother until she gets assigned to a room." (This is not the first time I have been to this same emergency room with my mother in her vulnerable condition. After various falls, I have been beside her in the chaotic hallway, standing by a stretcher, while we waited hour upon awful hour to be assigned a room, given a speck of privacy.)
“When did you come up with this new rule?” I stood as tall as I could stand in front of the large security guard.
“Always been that way,” he muttered and began leafing through a sports magazine on his desk. I could see through the glass wall. The paramedics with my mother were writing reports on their clip boards. So I walked outside and went around to the ambulance parking area. I pushed the button that operates the paramedic entrance. Suddenly the
security guard was in front of me again. He had no magazine now. “Lady! I told you that
you can’t go in there. You gotta wait.”
My anger matched my foolish feeling as I asked, “Have you got a mother?” We were joined by another security guard who held the door open for me and waved me inside. The second security guard rolled his eyes up under his forehead as he looked at his colleague.
Seven hours later, my mother and I were still waiting for a room to be assigned to her case. She was never offered a drink of water nor was water provided for her. Not one time, after the initial triage, did a nurse look under the sheet that covered my mother. The diaper my mother was wearing filled with urine and the hallway filled with the strong acrid odor. The nurses who walked by us in the hallway did not make eye contact with me. They treated my mother as if she were a post in the floor. They walked around her.
I went to the cafeteria and purchased a cup of water and a straw for my mother. I assisted the physician when he set my mother's fractured thigh. He taped two pillows to her leg. She is too old to be a candidate for surgery. Two hours later I went to the nursing station where all eyes were focused on computer screens and I asked that my mother be provided with some kind of privacy where I could change her diaper. Another patient, younger and more alert, was rolled out of a private room and my mother was rolled into his space while a nurse helped me turn and clean my mother. Dry diaper intact, we returned to our place against the wall in the hallway. When the tears came, I had no option but to sit on the floor and cry in plain view of strangers.
One person spoke to me, made eye contact and was genuinely interested in us. She was a patient; she introduced herself as BJ and we chatted a while. BJ had not seen a doctor in spite of six hours of waiting. She told me she was a diabetic, addicted to pain medications and bipolar. Her teeth needed attention. She had many sores on her ankles and calves in various stages of healing. She kept reminding the nurses that she needed to see a doctor. The more she asked for help, the more hostile the nursing staff became. One nurse walked up to BJ’s face and told her, “You have to go in your room and be quiet.” BJ rightfully pointed out that this was an emergency room—not a prison.
When the ambulance arrived to carry my mother back to the nursing home, BJ called out to me from ER Room #18, “Elaine! Come here!" She put her arm around me and pulled me close for a hug as she assured me, “I’m going to be praying for you and your mama.” That act of kindness went directly to the pain inside me like a balm. To be recognized as human. To be touched. And how ironic. The person who appeared to have the least to give was the person who gave the most to us in that health-care experience.
It would be easy to blame the nurses for our neglect and humiliation. “Bad nurses!” I could say and then brush my hands of responsibility for the inhumane way my culture, and its systems, treats our sick and aging parents. The nurses who were ignoring my mother were not necessarily unkind people. They are more than likely wonderfully competent and compassionate human beings who are working in a setting that is absolutely overwhelming for them. I suspect they did not look at us because they, in fact, do care. And they know the system is treating all of us poorly. They felt as powerless as I felt, sitting there with my head in my hands. It is the kind of shame- filled experience that prevents most of us from looking into the eyes of others. We are separated from each other by our feelings of shame. Until we stop merely feeling angry or entitled, until we start one by one modeling how to connect with each other as human beings and not as mere commodities-- our health care system, our educational system, our judicial and correctional system, along with all of our government agencies will continue to fail us in our hour of need.
The real emergency lies in our capacity to treat ourselves and each other with genuine compassion. My mother, and all patients, needs something more stabilizing than a splint, more healing than sterilized instruments. The real emergency lies inside us where we have lost the capacity to value the inherent worth of human dignity. We have given up on ourselves.
My mother is still somebody. She is my baby whether I want to see it that way or not. I am now her protector and provider. I have learned so much about me as my love for her has expanded and our relationship has become something other than what we once knew. I see her and I think, “She could be anyone’s mother. And anyone’s mother needs and deserves to be treated with respect and dignity.” We owe that to each other. We owe that to ourselves. We will only be as fully human as we are capable of looking within and discovering the gift of compassion we have to share. My mother is still a teacher. Lying in the bed as I sit beside her, she asks, “Can you do this?” Of course we would all rather not. Yet, if our turn comes to be completely vulnerable, we will want at least an ounce of compassion to be administered regularly.

The End
Elaine Blanchard
Elaine@porchswingstories.com
1736 Forrest Ave.
Memphis, TN 38112

I lost my mother to Alzhiemer's in July of 2008. The memory problems began well before she was diagnosed ten years ago - the long good-bye they call it. My experiences watching and trying to help her during the eight years that she endured complications from parkinson's disease, broken bones, and lung problems from repeated pnuemonias,infections of all kinds, not to mention mini-strokes that left her speech impaired - and eventually such constriction in her body that she was paralyzed - are muted memories wrapped in a kind of horror that I try to push back in my mind.
My mother never forgot who I was, nor my brother. My son visited her shortly before she died, and she became so enlivened that she sat straight up. She was still wise-cracking before her speech became so impaired that she could only nod, grimace, and smile at a nurse's jovial manner. Somehow her personality remained somewhat intact, though she was paranoid, aggressive and demanding at times.
I'm not sure if my mother really knew that she had a disease that robbed her of her mind, as the thought of alzhiemer's had always terrified her; we spared telling her that it was more than simple memory problems. Somewhere in her soul I'm sure she knew, and in that denial her spirit remained strong.
One thing I am sure of, is that she recognized and in her way acknowledged kindness from people who took time to speak to her and care for her in ways that were especially attentive to her as a whole person.
Six months before losing her, she had to have a feeding tube...a terrible decision made on the basis of how alert she became when her medication routine was suspended for awhile. She emerged from the the this medical induced haze quite animated and talked a blue streak while looking into your eyes, with the correct cadence and expression, words totally garbled. In the
resuming of the plethora of medication, she quickly descended into the quiet and far-away place she had ascended from for a short time - the threat of seizures being the main reason for a particularly sedating medicine.
I think my own feelings of horror are knowing that she was aware enough to know more than anyone thought she knew. A handful of people that were close to her realized this too. This made me fiercely protective of her - her dignity, her health, and her spirit. I shudder when I think of how quickly alzhiemer's patients are thrown away as if they were used up paper plates - insensitivity to alzhiemer's patients is epic in nursing homes and hospitals from what I observed.
A week before her death she had incredible alertness and responsiveness.....I knew it signaled that the time was close, though I was once again amazed at how she seemed to rally - as she had done this so often despite the doctor's prediction three years earlier that her time was near. The doctor finally decided she had the energizer bunny living in her, which made my mother chuckle as he told her this.
I am grateful for having this tenacious mother, and amazed that this quality of her lively personality made a way for her to bear up under the cruel nature of her diseases. God decided when He was ready for her, and the lessons I've learned through it all, I'm only beginning to realize.

My Grandma died in 2007 from Alzheimer's. We kept her home with us instead of putting her in a nursing home. We are lucky enough to have a large family so there was always someone here to take care of her. It was, and still is, extremely hard. We miss her so much. Watching her just drift away from us was one of the hardest things that we have ever dealt with. During her last days, we had hospice come to our house. They kept her comfortable but it certainly didn't make it any easier for us, though they did try. My husband was so overcome with emotion at the end, that this song just came to him on his way into work. He called it "Family Glue". We have decided to sell the song and donate 50% of the profits to the Alzheimer's Association. I know that you will all be able to relate to it, it is completely amazing. It has been 2 years and the song still brings me to tears, but it also helps me. I hope that his song will do the same for some of you. You can hear a sample of it and purchase it on our website http://www.illyrap.com/purchase . On August 11th it will be released on iTunes, Amazon, Rhapsody, Napster and eMusic. I will also put a copy of the Press Release that we have sent out. I just want to say everyone out there is in my prayers, I understand what you are going through.

~In Loving Memory Of Our Grandma, Anita Fahey~

Thank you for reading this,
Elisa Gomez

New York Recording Artist Illy Rap Raises Awareness And Money For The Alzheimer's Association

KINGSTON, NY- JULY 18,2009— Music talent Illy Rap is raising awareness and donating 50% of the proceeds from his new single “Family Glue” to the Alzheimer’s Association. Jarel Worthington a.k.a. Illy Rap has had a personal experience with the devastation that Alzheimer’s disease causes. In 2007, his grandmother’s battle with Alzheimer’s came to an end when the disease took her life. ”Family Glue” is written about and dedicated in the memory of his grandmother. Illy Rap says, “I think it is important to engage in this way through my music efforts. I feel if there will be any medical breakthroughs, there has to be broad public support and mainstream recognition.”

The growing in popularity Illy Rap will release his song “Family Glue” on the internet via iTunes, Amazon, Rhapsody, Napster, & eMusic on August 11. On his website, www.illyrap.com, there is a special pre-sale for all fans and supporters. It is already well known, through research, that poetry and music play a role in helping Alzheimer’s patients with their memory. This is another creative way that Illy Rap’s poetry-in-motion is being used to help eliminate Alzheimer’s disease.

Illy Rap has made his way into the music business by starting his own record label in 2005, IllyRap Recordings. Since then, his music has been recognized by New York City and local radio, he mentors youths and organizes music workshops at community centers, and he has worked with A-list celebrities and many other remarkable talents. In only a few years the label has solidified itself as a major force to be reckoned with in the Record Biz. Through his passion for music, he has attained friends and colleagues in Music and Show Business. Illy Rap continues to make new music on a day to day basis, he also attends local music showcases and makes special guest appearances at red carpet events.

For additional information on the news that is the subject of this release, contact Jarel Worthington or visit www.illyrap.com.

Contact:
Jarel Worthington
IllyRap Recordings
230 Kings Mall Ct. #225
Kingston, NY 12401
(646)727-0673
illyrap@illyrap.com
www.illyrap.com
www.myspace.com/illyrap

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Maybe these will answer your question.

AWAY

I am going to the closest place
that’s the farthest away.
I am not going by invitation,
chance or intent, but by the
direction of undoing.
Valleys, canyons, glens, dales
will all be made plane,
They will lie low , flat and down
one to the next to the next.
Whatever they once held
will let lose to frameless words -
Chards glinting in the light -
spilling, pooling beyond
where the horizon use to be.
Ending at the closest place
that’s the farthest away.

C. 2009 Belle Fox-Martin

BY THE TIME

By the time you come back
I won’t know my own name,
but yours will fill the air
as if never having gone.
Tell me , did you ever
hold me against your longing ?
You must have or am I now
forgetting the sweetest memories -
the ones that never happened?
Whoever you are, let me tell you,
there is so much more
to lose than remembering -
So much more than finding
your name where you weren’t
looking and wondering
what it might be.

2009 C. Belle Fox-Martin

My mom was diagnosed with Alzheimer's at age 68 and died at age 74.
For the first 45 years of my life, I struggled to find even ground with which to be in the same room with my mother for more than 15 minutes without one of us yelling at the other. That changed, slowly, as her fight with Alzheimer's progressed. In the end, there were many days that sitting with her for hours at a time, just being with her and watching her smile, that I felt there wasn't another place in the entire world I would have rather been.
As weird as it may sound, Alzheimer's, that horrible disease, gave me a gift I will be forever grateful to have received. A closeness with my Mother that I would have never allowed myself to have under other circumstances. Even in the end, I could walk in her room and her face would light up with unconditional love. I won't fool myself by believing that she had any idea of who I was. I was just someone who loved her back, and that's all that really mattered.
And now, two years later, my memories of my mom are of those times, and not the struggles before. Memories like the time when the Rabbi was singing Jewish prayers during the High Holidays, and my Mom, who hadn't spoken a word in months, held my hand and sang every word of that prayer with tears flowing down both of our cheeks. And the time when I had my feet on her wheelchair and she rubbed them ever so gently. And finally, after spending her final night on earth with her, as I rubbed her face listening to her final breath, I was given the best gift of all, knowing she was finally at peace.

The sicker my husband got, the more aged and frail, the more precious he became to me. I never thought of him in terms of “the person who was” vs. “the person who is.” He was always in the present for me, with an essence that never changed, “so much himself,” as my niece put it; and until the very last day, the person I most wanted to be with.

Re. memory, while it is true that it is necessary for functioning in the world, it isn’t necessary for being able to make comments about things. Quite late in Jerry’s dementia, he went to a neurologist who asked all of those tedious questions like “What’s today’s date, who’s the current President of the USA,” questions that clearly embarrassed my husband. I said, “Why don’t you ask my husband how he likes your tie?” Even at that point, Jerry was likely to have had a really nifty reply to such a question. The neurologist waved away that suggestion, in a sense, waving away my husband at the same time.

It gave me cause to ask myself, “What makes for a fully functioning human being?” It seems to me that it is someone who has emotional and spiritual, as well as intellectual and physical capacities. In fact, those are the more important ones, because they give us the ability to empathize with others. Some people walk, talk, do their daily tasks, believing they are fully functional, even as they are emotionally or spiritually crippled. I felt that Jerry’s emotional and spiritual life were still active, I just couldn’t access them the way I had in the past. Even when he no longer spoke and his eyes were closed, it was clear that he heard me and could respond to me with a lift of the eyebrows or a smile or a frown. His humanity remained intact.

I'm 58, a minister, artist, poet. My short term memory is falling away
in predictable and not so predictable ways that I can recognize but not anticipate. Having a diagnosis is of little comfort. Having faith
allows a freedom beyond the confines of my mind. Somehow 'hope' and 'hopelessness' don't apply to this disease but then again maybe they are the burden left to those who love me.

My brother and sister were worried about my Mom. She seemed a bit lost, forgetful, tired. She was only 60. When we had a family phone conference about what we could do, our best idea was, maybe she needs a new hobby. Only a few months later, on the morning after my wedding, my Mother asked me who was standing next to me. It was my wife, whom she had known for several years.

My Dad is her caregiver, and he was recently relating a story to me about Mom and her being upset with something. I said to him something about "wouldn't you be upset if you knew that in a way, you would be dying before you actually died? I surprised myself, because I'm never that blunt about things like that. Ever since then it's much easier for me to understand her moments.

They were almost ready to start a new chapter in their lives, my Dad was going to retire in a few years and they could travel and enjoy all the things they talked about over the years. It changed everything.

I just lost my mom, 90 1/2; she had Alzheimers -so I was struck by the multitude of voices that have chimed in on this issue. PLEASE remind your listeners that Hospice can be a huge blessing in the life of not only their parent/loved one afflicted with the disease, but in the caregiver's life as well. Do not isolate yourself while caring for your loved one. Churches also offer support groups and respite for caregivers. I lived out of state , away from my mom so I was not her primary caregiver but am very thankful for those who were, and for Hospice support at the end of her life. My prayers are for all those who are hurting because of this illness.

I am the wife of Judge Joe N. Johnson, professional musician, TV reporter, journalist, JP, lawyer, Judge, and still plays trumpet professionaly.

We have been married 58 1/2 years, 4 children, 14 grandchildren. Joe was diagnosised with Alzheimer's in Nov. 2003. I began journaling daily. I wanted to see if Joe had any decline. I was in denial.

To look at Joe one would never guess he has AD. He carries himself well. Joe played a 4 hour dance job 4-17-10. He doesn't need music to play. His talent is a gift from God. He sings but on some tunes needs the lyrics. Joe had recorde 3 CD's and is about to record 2 more CD's.

My journal is about Joe but also my journey as a daily caregiver. It isn't easy. I am honest in my love for him, my resentment, my grief, my struggle to make the best of each day. I know Joe is in quick sand and is sinking ever so slowly. I skirt around the edge of the pond. I intend to be his loving caregiver but I don't want to let the sand bury me. I wonder just how do I accomplish this fete.

Joe's Neuroloigst, Dr. David Moreledge, has encouraged me to publish my writings. He says everything I write is informative, interesting, honest, funny and sad.

In the beginning I lived saying to myself daily, "It is no big deal unless I make it a big deal", and "Joe may have Alzheimer's but that is not who he is". Both are true to a point. I have grieved from the lack of conversations we have. Joe doesn't retain enough of any outing or etc. to have a conversation. During one of my quite, listening times after retiring this is what came to me. "Deane, Joe does have conversations with you every day. His repeated questions, asking you how you feel, did you sleep well, and simple questions is his only way of converseing with you now". After many months of grief trying to decide if Joe should stay at home with me at any cost to me or put him in an assisted living Alz Care home. The ligisticts of going in that direction was more than I could do. That night, I gave all my burden and decisions pretaing to Joe, I said, "Lord, these are yours. If ever the time comes to make this decision you will let me know. I, for the first time, gave the burden to God. I got up the nest morning and was free of worry, and decisions. I still cry, I am still sad, and I miss the Joe that once was. I still have Joe, he may not know me at times, but ever though he doesn't know my name he tells me he feels very close to me. There are so many things we don't do anymore, but the things we can do I am discipling myself to enjoy "that" and let tomorrow take care of itself.

This is not a job unless you are in-love with your mate. We have history, and roots that run deep. The flame for Joe may flicker but it is there, never to be snuffed. I have told our children and our friends maybe I love too much if that is possible. I don't know how to love any other way.

Bless all you cargivers and families who take care of a loved one with AD. It isn't easy but,
It is rewarding .
Sincerely,

Deane Johnson

My friend and I grew up together in the Chicago area. He has what I call a perfect family. All very smart and talented. His mother is a concert pianist. They had an ideal life. all the children grew up into successful and lucrative careers. Last year I told him how much his family has influenced me, how impressive they were without calling attention to themselves and how generous with their time, assistance where they saw the need and most important their great kindness. There were never any major problems in their lives. They were amazing.

Now his beautiful mother has Alzheimers. For me it is so hard to imagine how this wonderful women and her family are facing such a major challenge in their lives.

My friend has been very supportive to me in these recent years. We talk regularly on the phone. I have end stage heart disease with 14 stents in my heart, unable to have a bypass and a severe case of fibromyalgia. I don't have the support system his family has- my wife divorced me after the first year of successive heart attacks I had that finally disabled me. She no longer wanted to be married to a sick person. She has demonized me to my children much as went on in her family when her parents divorced. Only one of my children speaks to me. So this issue of memory and love is a tender one for me.

The photo essay is poignant and very touching. I was amazed how willing the son was able to show the raw beauty and pain of this disease or any fatal disease. I cried through most of it and was deeply touched by the love I saw in every picture. My parents both died young of heart disease. I have out lived both of them at 57.

At least 15 other members of my family all died of heart disease. Were it not for the great kindness of this friend I would feel utterly alone( there are too many details that create that "utterly") Now I can give back with support to him. I will be emailing this story to him. I am being considered for a heart transplant. I am almost completely disabled and live alone. It will be very good that I now have a way to give back to him and his family with information such as this SOF program and the understanding I have gained with my own grappling with death which could happen any time- just like the rest of my family. Modern technology that my parents and family did not have has kept me alive longer. After seven years I am wondering how wonderful this technology really is as I live to see my family disintegrate and shun me.

So thank you Phillip Toledano for creating such a beautiful and touching piece of art about love and memory and the wonder of our uniqueness in this world. And I haven't even listened to the program yet!! Thank you. Thank you. Thank you........

My father, Ken Murphy, died November 2007. He was 82 and had a beautiful faith that presented itself in his smile. There are 2 stories that occurred in the last year of his life. This one he repeated many times and no one had heard it earlier in his life. Dad enlisted in the Navy at the end of WW2. He was on a ship in the Pacific and had always told us that the only action her saw was scrapping rust off the sides of the ship. In the last year of his life, Dad relayed this story. He was a navigator on a flight crew and the day before the last mission (Dad's first) was to depart the aircraft carrier, Dad cut himself and was in the hospital. His pilot came to see him and told Dad that they would stay behind and wait until Dad recovered. None of the planes that departed that day returned. Then the Pacific war was over and Dad and his crew returned home.

The other story that stays with me is my nieces wedding in Boston in August 2007. I have 4 siblings and we worked together to fly Mom and Dad to the wedding and escort them to the bridal dinner, wedding Mass and reception. My father had little language at this point and was mostly blank. At the bridal dinner, Dad pointed at Megan (the bride to be) and asked me who she was. I told him she was Megan, his granddaughter, my sister Kathy's oldest daughter. About 30 minutes later, Megan and Brad (groom) came to say hi to Dad and my father said to her, "Megan you have chosen a wonderful husband in Brad and I know you will have a wonderful life together." Megan and Brad were blown away and I saw the wisdom and faith that remained in Dad.

might alzheimer's be a blessing in disguise, too? mama used to be hard, controlling and fussy... but now she's become quieter. she likes it when i wipe her, clean her. i hug and kiss mama a lot now... i know we're losing her bit by bit. giving care is my way to make up things with mama. and i hope i've done quite a bit, too... alzheimer's has become an offering of grace to another. we love you, mama!

in regards to the topic for this Sunday, my experience with fleeting moments of Alzheimers of the past two decades has been observed and corrected more less with the personal aquired disciplines of healthy living and allowing of moments for breaks (social,quiet space intervals,meditation and more)from stress crunch overload which if not so disciplined will creep up on one from behind and find me hypnotized. Is a quantity-v-quality matter. Not sure if you would be able to use this, but inspired non-the-less to share.

Listening to the show about Alzheimer's and you're speculating about patients ability to remember the Lord's prayer (?) sing a hymn (?).

Instead of being so well learned that it can't be forgotten, maybe it is lodged in a different area of the brain, that isn't impacted by Alzheimer's in the same way, e.g., the role of song in Melody Gardot's recovery http://en.wikipedia.org/wiki/Melody_Gardot

Another example is the way that cycling skills exist in some people with advanced Parkinson's. http://www.nytimes.com/2010/04/01/health/01parkinsons.html

Diseases may affect the brain in ways we can't being to understand.

Interesting show.

The fear of loss, of diminishment, though raised to a higher than usual level for one with dementia, is present throughout our lives to a greater or lesser degree and in varying manifestations. There is, apparently, no way of knowing what one takes with him...fear, joy, peace, anger,frustration... into the mysterious world of Alzheimer's. And I don't presume to suggest that a cause and effect relationship exists between how I handle life today and how my personality may be altered by biology should I slip into dementia. But what I do believe is that I have choice at every intersection in my daily life, and as I make the effort to choose deliberately and courageously, being truly aware of my thoughts and actions, and their motivations,I discover a much more expansive self beneath the ego/fear-driven one that once governed me. Peace, joy, and patience push aside fear, anger, and frustration. I cannot control my future, but each moment wisely lived is an eternity to be celebrated.

I have been listening to your program on Alzheimer's today and I loved it so much. My mother died in 2008 at 94 and she struggled with dementia for many years. She was never really diagnosed with Alzheimer's but she had many difficult years and grew combative at the end. I kept believing in the value of my visits from 3 hours away and hoping that they were worthwhile for her. You verified that in your conversation this morning. Mother said when she was in assisted living that she felt like her head "is filled with chiffon scarves." It is such an amazing image and I, as a writer and artist, am haunted by it. She was always stubborn and we should not have been surprised at her late-in-life rebellion, but we also needed to take it seriously. That is my sorrow: that we could do so little about how she was cared for day-to-day. I have written a little poem about the things I found in her room when she moved to nursing care. They were cheap littl e children's toys which I am sure were a part of her rebellion. You helped articulate the importance of regarding our parents' beauty even in the midst of their drifting away. I believe that, most of the time, I was able to do that. Thank you, Cindy Cronn

Thank you so much for your program on Alzheimer's - my 90-year-old dad has been diagnosed with early dementia, and while I missed most of the program (overslept!), I look forward to listening to it on the website - thank goodness for the Internet and your wonderful, informative website! The comment "I don't know who you are but I love you" was so poignant - thankfully my dad isn't that far gone yet. It is very similar to a statement made by a friend's husband after he no longer "knew" her - "I don't know who [you are], but I know you love me very much." He's been gone now for a few years, but that statement gives me so much comfort for what may lie ahead for my family. I love your program - it airs at 7 a.m. Sundays on my NPR station, and I love to lay in bed and listen to it. It replaces going to church for me... no longer participating in organized religion....

I've been listening to your program on Sunday morning for several months. This morning's program on Alzheimer's was particularly moving. My 83-year old mother herself does not have Alzheimer's but one of her closest friends does. She sees this as tragic both for him and his wife. This helps me understand and prepare for the possibility that she, too, may some day "fade away". It need not be "tragic".

I listened again to the interview with Alan Dienstag whom I knew when I worked at the Alzheimer's Association. His experience was poignant and instructive - despite a diagnosis that scares and often sends people into depression Alan found a way to reach them through writing and offering a place where their thoughts and expression still had value.

I also run support group for caregivers, now in New Jersey and also work at a day program designed to maintain stimulation and socialization for people with cognitive impairment (not all have an Alzheimer's diagnosis).

Where my experience varies somewhat from Alan's is meeting people who do fight against the diagnosis and the changes they see in themselves. Not all go quietly into the night. Some people become very belligerent and continue fighting well beyond their ability to maintain independence.

One man looks to the sky and cries out, "this isn't me, G-d. This is you. This isn't me."

Another woman one time looked at me when it was clear she wasn't able to follow the conversation we were having with her daughter. "Can you believe this? This is a hell of a place to end up."

In the support group I ran in NY a regular member started to fail himself while caring for his wife whose dementia was advanced. He brought her to the Center (a senior center with a special program for people with dementia) a day early. He'd show up for the group at odd days and times. I called his family after having to send him to the hospital after he had TIA's and each time he looked at me with his charming smile. "I'll be ok." By the time his family stepped in, he was exhibiting clear signs of mid-late early stage of the illness but fought until the day he, too, was placed in the same facility as his wife.

And one last, sad account. The woman who was in an assisted living. She and others knew that the building on the other side of the courtyard were for "them." The crazy people. Those with dementia. When she was no longer able to care for herself her daughters did everything possible to make that transition as easy as possible, first telling their mother that her apartment had flooded and she was going to a room there temporarily.

Despite routing around her purse for her underpants; despite calling her daughter to say there was something wrong with her phone and other increasing episodes when she saw where she was to live, this woman had a breakdown. This is not where she belonged, this was for "them" not her.

She stopped eating and taking her medications. Her anger was palpable even while her behaviors continued to deteriorate.

Some people know. Some fade slowly into oblivion. But all watch and react to peoples' attitudes and actions towards them. It's in the eyes. The safer people feel and the more eye contact is made, the feeling of safety continues.

It continues even when there's no language. It's the feeling of the person that professionals from paid caregivers to social workers, family members, physicians remember and need to be cognizant.

Never talk in front of this person who, too, is in the room. Think kindly because when you don't it shows and that person who can no longer talk may feel your words.

One

I just wanted to comment on the Alzheimer's story. My grandmother, around 1960, came down with, what they then called "Hardening of the Arteries", however it was classic Alzheimer's. She would sit, when the disease had progressed, probably 5-6 years after we knew she was sick, and recite the books of the Bible and gospel hymns, although she knew no one. My mother who was her only child had passed away when I was born. This caused my grandmother to experience terrible grief. I have always thought this might have been the "triggering" event, although I was about 9 years old when the family really knew something was wrong. I so appreciate your program. God bless you always. Roberta Young

Krista, I would just like to thank you for your inspiring and caring work. Listening to the Alzheimers program, with tears streaming down my face, I was reminded how similar it is to sinking deeper and deeper into my lifelong struggle with chronic depression. I am now 69 years of age and even with medication, it is a daily nightmare trying to force myself out of bed each morning to face another day. Each day I am less and less the person I was. My last two visits with my daughter and her family, she lamented to me she felt as though she is slowly losing me. So like Alzheimers. Bless you. ~Joyce

I chose to listen to "Alzheimer's, Memory, Being" where Krista interviewed Alan Dienstag, a clinical psychologist, and together they explore early signs of Alzheimer's disease and memory recognition. Alzheimer's effects 1-8 Americans, 65 and older, and by the year 2050, more than 100 million people will be effected by this disease. There is no cure for Alzheimer's disease and this doctor helps patients focus on cognitive memory and to take life for everything it's worth and have the patient share with others things that they are feeling because before too long, that memory is once again gone.

The loss of memory, one of the early signs of Alzheimer's diseases, has to be such a horrific feeling, not only for the patient, but also for the family and loved ones of that patient. They physically see the person they've always known, but over time this person becomes a stranger because they have no recollection of the past. It's horrifying to think that there is no cure for this devastating disease, but Dr. Dienstag tries to help his patients by continuously writing things down. By writing things down, the patients are turning over their memories to the doctors, therefore the memory does not become lost. Verbal memory is much different than a tangible memory, verbal memory can easily be lost and forgotten about, where a tangible memory, such as writing something down, will last forever.

I have been so fortunate and blessed to not have Alzheimer's in my family, however, millions of people do have to live through this debilitating disease. There are support groups available and doctors to help through this tough time and Dr. Dienstag does such wonderful things in trying to help patients and loved ones through this rough journey. I don't think that anyone could understand the pain and suffering that Alzheimer's brings to a family until they've have to deal with it.

I think that we must cherish each moment in our lives with our loved ones and try to have everlasting memories, through photos, or film, or even through artwork. This way the memories we share can never be forgotten. Memory and health is something that many of us take for granted because it's so common, it's like breathing, we just atomatically do it, but to not have our memory, or health, would be truly devestating. I think it's so important to love in the moment because we never know when our time is up.

There is Alzheimer's disease on my mother's side of the family. My favorite aunt started with the disease at the age of 59. She lived with this terrible disease until she was 73. Two of my mother's other sister's had the disease also. Fortunately my mother does not have the disease as of yet. She will be 74 this June. For about the last year of my aunts life she did not know who anyone of us were. We would talk to her but she showed no response to us. We tried to spark some recognition from her through memories we had of her.

I found what Alan Dienstag is doing great. I think that for a person with the beginning stages of Alzheimer's disease to be able to write down memories or some special words for a loved one before they forget is a great idea. By having these memories written by your loved one would almost help with the grieving for the lost memory. I believe when you lose someone like this it is almost like grieving a lost soul.

I think that the personality of people with Alzheimer changes a lot. I remember how my aunt never said a swear word while I was growing up. When she was in the advanced stages of the disease she would swear all of the time. If she would have known that she was swearing she would have been embarrassed.

I find this disease one of the most terrible diseases that the victim as well as the family has to go through. It is not an easy thing to watch an aunt go through this as I have. It is heartbreaking to see a loved one go through this.

Right off the bat, I liked how they stated that in the brain, memory is not in just one place, it is throughout the entire brain in many different areas. Which is why it is so hard to know why, such things as Alzheimer's, happens and how it can effect many different parts of the brain.

Memory and identity, two things that are closely linked to one another. Through some memories that you hold, it begins to form you identity. Memories are something that separate you, from someone else. They are something that only you can hold on to. "People lose the ability to present themselves" was a quote that was said in the show. That held very true to me. Because Alzheimers comes at such a late age, many people are very used to how they have lived for the past many years, and to one day depend on someone more than you can depend on yourself has to be something of much difficulty.

Overall I very much liked this broadcast. It had opened my eyes in areas of the disease that I had not thought of before. Especially when thinking about how close memory and identity run together within a person. And how much I personally, take for granted my ability to not depend on someone else for as many things as others do. This broadcast made me very thankful to have the memories I do have, good and bad. Because overall my memories are what make me who I am, and make me different from everyone else.

I found this topic was one I could really relate to. It was interesting to me that many older American’s are afraid of getting Alzheimer’s disease more than heart disease and stroke. I would be frightened as well. I would never want to lose my memory. I think that Allen Dienstag’s idea of “giving memories away” in the form of writing things down is a great way for them to have some control over a disease that they ultimately have no control over.

The broadcast said that it is expected that one in every eight people age 65 and older are going to get the disease. As they age the risk of developing the disease rises. That is scary to think about. I work in a nursing home where I see all stages of the disease. There are people who have the early stages and then there are people who have lost the ability to speak. It is hard for me to see the progression, but it is also harder for the families because they remember what Grandma or Grandpa used to be like.

I think that writing their thoughts, feelings and memories down is a really great way to make sure that what they have to offer their family is not lost. I would think the family would love to have those memories written down, so that when their loved one is gone they can remember how they used to be.

There are no words to describe the pain, sadness,helplessness when you have a loved one with Alzheimers disease.My father was ill for seven long years.He was a devoted,great man.A fabulous dad,his grandchildren just loved him.All his friends and neighbours new him as a helpfull good citizen. When he began to forget, my sister and I decided that we will keep him at home. Well, the doctors told us then you better quit your job. We could not do that and had to place him in a locked facility. I must say however,we found a great place and I used to visit the owner just to say: THANK YOU SO MUCH for taking such good care of Papa.We had a schedule, every single day one of us went to the home to see him and check him out. That made us feel so good, I could not sit down and eat my dinner without knowing how father was doing. That is the memory we have about Father,because we took part in his sickness, my sister and I were there ALL THE TIME rain or shine, we never missed one day without seeing and checking on him.I recall that many patients did not get visitors as they should, many patients are put in homes and yes, maybe twice a year, once for Birthday and once for Christmas they would visit them NOT US. It was not easy but we gave him all the love and care he needed and that we want to pass on,maybe help a neighbour, friend or relative. EH

This show lead me on a journey of thinking about what makes me “Me”. If all my memories left me, what would stay behind? What is the core of a person? It is hard to know what the patient sees as the core; we don’t know what they’re thinking about. Care givers try hard to dig inside the shell that was once a loved one of theirs. They recognize the exterior, but have no idea what is going on in the interior. They hope for that look of recognition, anything, that would tell them that the memories they had with the patient didn’t vanish.

I can only imagine the loneliness an Alzheimer’s patient lives in. It must be hard for them to not recognize the world around them, who they are, what they are, and what their life is all about. It is a scary disease that nobody wants to suffer from. It is the scariest disease for people, because it’s the one disease when you know that you would be alone in. People move about around you, but you don’t have the emotional connection that would assure you that things will be OK. The memories are gone. They used to bring us closer to the ones around us; knowing what we went through together, how things affected us, and where they lead us are what made us build relationships. It would definitely be scary for me to live in a blank world; just me and my blank mind.

Alzheimer’s disease is a progressive degenerative disease of the brain that ultimately results in dementia which is a mental deterioration. Victims exhibit memory loss, particularly for recent events, disorientation, shortened attention, and eventual language loss. This is such a familiar case in my country but we usually blame it on aging. My grandfather at age of seventy could still remember all his grandchildren birthdays but after a while he had cataract refuse surgery as he think he will die soon anyways but he could still recognize his children and grandchildren voices. This blindness leads to a shortness of memories so severe that he could not remember our names nor who could he identify us.. We were not familiar with such a disease so we thought the memory loss was caused by the blindness. It was so sad to watch our strong grandfather becoming a stranger to us, there was not much conversation when we visit him., he get very frustrated and tear bed sheet, wet the bed… I learn about the disease when I came to America and took psychology and anatomy and then I begun to understand what my grandfather went trough. I wish we wrote down his last thoughts like the psychologist Allen Dienstag is suggesting.

Alzheimer's is a sobering disease since it it the gradual dissolution of identity, and it's terrifying to watch someone you love, slip away in this way. My mother in law suffered from Alzheimer's and it was shortly after receiving her law degree at age sixty-five, after a long and productive life as teacher, that this happened. We knew and she knew, that something was terribly wrong.

There are sadly, many people dealing with the pain of this kind of loss in those they love. I have run groups called The Stories We Tell and have had people in the early stages of Alzheimer's in these groups. I think they have found it rewarding to share their stories, on paper, as best they could, and yes, it seems like a concrete way to capture that which is so deeply a part of another's being, their stories.

I wonder when I contemplate what happens to people suffering this loss, about the nature of identity itself. Who are we, if not the stories we tell, that rich interlocking web of connections that so informed us and our lives? It seems to lose this, is to lose the world, and to lose what anchors us, what keeps us deeply rooted.

And so I think the human touch is so important. Routine is so important. Anything that can help ground a person who is losing so much, to tether them, as best we can, to love itself. There is for me, a deep connection in words, and the word routes, and roots is aurally synonymous. I do believe, when we lose our routes, namely the paths we have taken, that which is also roots, being identity, we need each other like never before, to provide whatever anchors can be provided. Sometimes it is a case of trial and error, I do deeply feel that routine, something predictable, is important, because one needs to build in somehow, the "known". Structure becomes important. It just might be helpful.

I would hope that all Alzheimer's "patients" get loving care, because I cannot imagine how it might be to totally lose that sense of myself in the context of friends and family, and I think compassion is the only answer. I do know that often people with Alzheimer's deeply respond to music and also to animals. Something to hold on to, if just for a short time.

Alzheimer's has been the topic I've heard about but was never knowledgeable about. After seeing the topic online I decided to listen to the show.

In his conversation with Krista Tippett psychologist Alan Dienstag shares his experiences with Alzheimer's patients. Detecting the diagnosis early is very important, even though people naturally try to deny the desease. Apparently, a person with Alzheimer's loses memory, one of the vital functions of the brain. Moreover, a person can see how their mental abilities deteriorate.

One particular item of interest for me was the experience of Alan Dienstag with the group writing therapy. It turns out that memory while writing can be different from memory while speaking. The way of thinking while writing works differently. I think I can relate to that: it is easier for me to structure my thoughts in written than in the oral form. Sometimes, during writing you can come up with things you didn't realize you remebered. Importantly, Dienstag's patients didn't mind the therapy and it seemed to provide comfort to them.

I began having a personal interest in Alzheimers after my grandmother was diagonised with the disease. When she began to have some memory loss we all thought she was just getting old. We saw my grandmother disappear right before our very eyes and this was one of the hardest thing we as a family had to deal with. It was not until we attended a support group for families that we began to realise that what she needed was acceptance and love.

We began taking her to support group and it was there that you could see her come back to life as she had the old spark in her eyes. I never quite understood it until I listened to this interveiw, especially the part where Alan Diestang had stated that, group does provide a sense of commonality which is more powerful than what the family can give them. I would recommend this interview to anyone who wants to learn more about memory.

My grandmother died a little over a year ago from Alzheimer's. Even though it's been that long, it's still hard for me to think about it without feeling like I want to cry. When my grandmother died, she had been in the nursing home for only three years. Before that, she lived with my parents and I. Now, usually when someone has Alzheimer's, their personality does a complete 180; that wasn't the case with my grandmother, though. She had the same sweet personality she had always had. The only thing that seemed to change was that she became more childish as it progressed. While she was living with us, it kinda annoyed me. I felt like I was having to help take care of a child. It was only after her death did I realize that some of the stuff she did was funny. One thing I'll never forget was something she said when she was in the hospital once. She said that she planted her house and also planted a hot chicken in the backyard. Another time when she was in the hospital, our preacher came to visit her. After a little while our preacher decided to pray and asked my grandmother if she could quiet for a minute. Well what did she tell him? "I reckon I can." When my mom told me about it, I just couldn't help but laugh at it.

Now that my grandmother has died, I'm glad to know that she is no longe suffering. Even though I still miss her a lot, I feel better knowing that some day I will get to see her someday. Granny, I love you and can't wait to see you again!

I work in a nursing home-direct care and I am in the department of alzymers. This discussion was really important to me in understanding and answering my questions. Worship of deity I believe involves your mind, cognitive part of your memory and I have been worrying what happens to their spirituality, they have forgotten everything, their families and their loved ones also God, there is nothing that makes sense to them not even the reason of their existence. This discussion, hosted by chista tipit, guest psychologist Allan Lindbergh. Alzymer or dementia is a disease that affects the mind, from the programmed this, giving memories away than receiving them this is affecting 1/8of Americans and 100million people will be affects by 2050. And most people are scared of this than any other disease, there is generally no linier development during this period and they live in denial. They are not conscious of their presence, only that what is only left is their core left, but not always. Sometimes it ends up with full of despair and pain. Place of knowing and not knowing. From those who have experienced this maybe from close friends relatives and love ones they say they are totally different. Their feelings, intuition and cognitive abilities are no more. This programme helped me realize that they still have memory only that they cannot convey, I realized there are different kinds of memory. They can write it down; it expanded my thinking that we sometimes do things without thinking, or write something down without thinking. If you give something away you don't loose it. And in the memory bank they are well learned, they internally know and acknowledge and love God if they did if they were young. This was really challenging to me because at work they can sing the songs they used to sing when they were young and to me this is really important. As a Christian ill rather encourage people to be serious with God and his service such that if they loose anything later in life they will still have Jesus.

It is said that 1 in 8 people over 65+ years old develop Alzheimer's and diagnosing it early on can help the patients prioritize their time and say what they want to loved ones, while they can still convey it. This disease steals away memory, speech, some cognition, and ability to do day to day tasks, but emotion and the spiritual aspect of people are always left. People can still convey humor, happiness, sorrow, and feelings; though they may not be able to form sentences.

In the group settings Dr. Dienstag conducted, he was able to have the patients write down memories and give him the papers as a form of "passing on the memories" rather than losing these memories forever. If you give something away, you don't really "lose" it. Writing accesses a different part of memory in the brain than speaking or just general thinking does, so it helps the patients because they think differently when they are trying to write memories down. Dr. Dienstag spoke of two particuarly interesting female Alzheimer's patients. Both were from his writing group. One of them wrote down just two lines for her memory exercise, and struggled to do so. Some of the letters were backwards, she had crossed out some things, but in the end she was able to write about a lover of hers and a fig tree in Athens. These two sentences conveyed a memory and emotion from her that others may have overlooked her ever having, due to her disease. Another patient named Anne, had progressed too far in the disease that the writing exercises were seemingly not a good use of her time so she started having individual visits. During one of these visits, he told her that he was going on vacation to the beach. Anne smiled and he asked her what she loved about the beach. She paused, looked blankly away, and then said "There's some kind of music that lives there." Dr. Dienstag said this flash of wisdom is something he believes to be of a spiritual component that still lingers with the sufferers of Alzheimer's. This story has changed my entire line of thinking about Alzheimer's. To me, this shows that there is some hope for those of us left behind, so to speak, by those who are suffering from Alzheimer's. They are not entirely gone, and they can still love and are still a part of all of humanity. This is substantially beautiful; that when all is seemingly taken away from the mind of someone, they still remain.

It is said that 1 in 8 people over 65+ years old develop Alzheimer's and diagnosing it early on can help the patients prioritize their time and say what they want to loved ones, while they can still convey it. This disease steals away memory, speech, some cognition, and ability to do day to day tasks, but emotion and the spiritual aspect of people are always left. People can still convey humor, happiness, sorrow, and feelings; though they may not be able to form sentences.
Clinical psycologist Dr. Alan Dienstag was interviewed for this podcast. He works in group settings of people with early to late stage Alzheimer's. In these group settings he was able to have the patients write down memories and give him the papers as a form of "passing on the memories" rather than losing these memories forever. If you give something away, you don't really "lose" it. Writing accesses a different part of memory in the brain than speaking or just general thinking does, so it helps the patients because they think differently when they are trying to write memories down. Dr. Dienstag spoke of two particuarly interesting female Alzheimer's patients. Both were from his writing group. One of them wrote down just two lines for her memory exercise, and struggled to do so. Some of the letters were backwards, she had crossed out some things, but in the end she was able to write about a lover of hers and a fig tree in Athens. These two sentences conveyed a memory and emotion from her that others may have overlooked her ever having, due to her disease. Another patient named Anne, had progressed too far in the disease that the writing exercises were seemingly not a good use of her time so she started having individual visits with Dr. Dienstag. During one of these visits, he told her that he was going on vacation to the beach. Anne smiled and he asked her what she loved about the beach. She paused, looked blankly away, and then said "There's some kind of music that lives there." Dr. Dienstag said this flash of wisdom is something he believes to be of a spiritual component that still lingers with the sufferers of Alzheimer's. These two stories completely changed my outlook on Alzheimer’s. I feel as if this gives hope to the ones left behind, so to speak, by those suffering from this disease. Even though the disease attacks the mind and it seems like all is lost, the person still remains. Love is not gone, the humanity is intact, and the human emotion is stronger than any disease that may ravage the mind.