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Painful and Beautiful

Today's New York Times has an article with an accompanying short video. It's about the author and film maker's mother, Pam White, and the man who married her, loves her, and is her principal care-giver through her journey with Alzheimer's disease.

My mother, Pam White, has had a full life. In her 67 years, she has raised three happy children, enjoyed a rewarding career as a social worker and been a devoted partner to my father, Ed. But, as she puts it, “There’s just one little glitch.” In 2009, at age 61, she was told she had early-onset Alzheimer’s disease.

After my mother’s diagnosis, I moved back into my parents’ house near Boston to help care for her. As my mother started to share her nascent experience with Alzheimer’s with me, I began filming our intimate conversations. For the next four years, we recorded both the big events and the small details of my family’s changing reality.

One of the most striking things that Alzheimer’s has revealed is the strength of my parents’ marriage, even as it alters their relationship forever. This process has been both painful and beautiful to watch. With this Op-Doc video, I wanted to share that complexity.

The video is both painful and beautiful to watch.

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The video is only the beginning. It doesn't get to the really painful part, the unbearable destruction of relationships, when the person who is sick stops recognizing her own kin, feels surrounded by strangers and asks for her mother, no longer aware that her mother is long dead. Between periods of insanity she has moments of lucidity and mutters to herself in distress: "What's the matter with me? I'm losing my mind!" The people who love her can do nothing to alleviate her anguish: she no longer knows them. She no longer recognizes her own house and asks to "go home", where "home" is that long-ago place where she grew up, no longer in existence. Disoriented, her personality may change. She may need to be restrained to prevent her from going off in a fruitless search for her "home" and her parents. For the people who love her, it is torture to see her in that state. Sedated by chemicals, she falls into a heavy stupor. The ghost-like shuffling body is still there, but the person seems to be gone. When she dies, everyone, I suspect, has a secret sigh of relief. She, too, is surely relieved that the ordeal is finally over. Even after that, the pain that the illness inflicted on herself and on the people close to her keeps her demise fresh in one's mind and interferes with the good memories of her life before Alzheimer's. The only good thing is that with the passage of time, people, too, start forgetting, and the memories of the illness lose their sharpness.

"Beautiful"? I know nothing worse than Alzheimer's. I know that in contemporary culture one is supposed to always look for the bright side of things, but, Alzheimer's ? That's taking it too far.

Still, if one tries to look for consolations - I once  read a book by a man who had Alzheimer's. His favorite companion as the disease progressed was his dog. With a dog, you don't have to have complicated, confusing conversations. You don't have to be worried of saying the wrong thing. The dog just is, and maybe our relation to dogs does not change much during our lives, so that, even if we forget decades of our lives and increasingly see to world with the eyes of the child that we were, still, the dog's presence is not disconcerting, and its company can still be enjoyed even in the middle of insanity. When we lose the ability to relate to fellow human beings, even if we lose all connection to those who used to be closest to us, we can still be friends with our dog. 

Additionally, for the many among us who have been lucky enough to be raised Christians, going to Mass is something that can continue, and the prayers learned as little children are the last things to be erased from memory, so for a long time the sick person can still go to Mass and find a modicum of comfort in an environment and rituals that are still somewhat familiar, and pray a God who may give some temporary peace to the person afflicted with Alzheimer's. 

God and dog: the last consolations of the Alzheimer's patient.

Both of my grandmothers suffered from dementia.  One of them died of a heart attack before it got advanced.  The other one was pretty much a classic Alzheimer's patient.  Even though some family members insisted that it wasn't Alzheimer's, that the doctor said it was some other type of dementia. I thought to myself, "What difference does it make, the bottom line is the same!"  It did appear that she suffered more in the earlier stages, when she knew that she was losing it.  She seemed to achieve a kind of peace later. Then the family suffered more, because it felt that we had lost the person we loved.  The priest would bring Communion to the nursing home, and he said that sometimes he would get a spark of recognition of the sacrament from her. In some way that we don't understand perhaps they are consoled by God in their loss of cognition.  Grandma has been gone 27 years now, but sometimes I feel her presence, like she is thinking of me from heaven. I don't think of those last years much any more.  As Claire said, there is nothing beautiful about Alzheimer's. But my mother's death from cancer seemed worse. Such things that we have to look forward to!  But I always felt, with both of them,  that disease and death didn't have the final victory; that nothing that was essential to who they were was lost.

Here is a beautiful ad on the same theme from an insurace company in Thailand,  So well done.

https://www.youtube.com/watch?v=_qtqmaIag-8

Good comments. So far, hasn't occurred in my family but I've sadly seen a friend's father suffer from it. Though he couldn't remember what happened ten minutes ago, he recognized family to the end. Losing that connection has to be the worst.

Claire,

Those who have experienced the ravages that Alzheimer's inflicts upon loved ones can resonate to your unsparing depiction. It is a terrible disease.

I do not think, however, that the article and video are reflective of contemporary culture's penchant "to always look for the bright side of things." The heart of the matter is rather the perduring power of loving relationship and commitment: that is the painful beauty.

No doubt the course of the disease will differ with individuals and the familial context and possibilities will as well. But does not Christian faith inspire us toward a sacramental presence to the afflicted that surely invokes God but also assuages by human touch? Depending on the dog may more reflect the culture than the Gospel.

 

The internet is replete with sites where Alzheimer's victims' family members (and sometimes caregivers and the victims themselves) express their bewilderment, grief, and love in poetry as they try to come to grips with this devastating disease. I've linked to one such site below. What the expressive efforts may lack in poetic mechanics and style, they more than make up for with their heartfelt attempts to understand what is happening to their loved ones and the anguish it causes others.

http://www.zarcrom.com/users/yeartorem/ADpoetry/contributed.html