Alan Dienstag — Alzheimer's, Memory, and Being
April 22, 2010

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?


123 reflections
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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.

Pertinent Posts from the On Being Blog


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


"I am building my capacity for love now, so it can sustain me later." —Alanna Shaikh, on Alzheimer's lessons and the love of her father.

Krista acknowledges the inspiration for this show.

Ina's Story, a new therapeutic initiative for caregivers of loved ones with Alzheimer's.

"It's a prime time of my life, and I basically gave it away." A film that explores one family's story on the high stakes of caregiving for their parents.

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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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:


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 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 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 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's not her'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:


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.

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


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:
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.


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.

Michael Gore

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

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.


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.

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.

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.

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.

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.

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.

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.

Ross Schriftman

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.


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

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