IS THE "LOSS OF SELF" IN MILD TO MODERATE AD INEVITABLE? (Oct., 2000)

Why can't persons with mild to moderate Alzheimer's Disease cope successfully the way cancer patients sometimes do? At first the trauma of both cancer and a terminal diagnosis is overwhelming, and the task of learning about the disease and its treatments (and undergoing these treatments) is an additional drain, but with time and working-through the patient can develop a perspective. Each life is mortal, each has limitations, each is vulnerable to suffering. Becoming more deeply aware of what this means and what it has always meant, some terminal cancer patients are able to convincingly write that their diagnosis has been a wake-up call to become more their true selves, more (on the deepest level) the persons they were meant to be.

I question the assumption that we with mild to moderate AD don't have a similar opportunity, that we have to resign ourselves to the "reality" that our "selves" are diminishing? We retain our capacity to experience and share basic emotions--particularly love. We retain our knowledge of the basic facts about our lives, and their meanings. We can continue to be creative, as "Memories in the Making" art shows. I believe also that we can retain our capacity to problem-solve, if we genuinely accept that our train of thought must henceforth be a local rather than an express. I argue this in Dementia Survival -- A New Vision, and our collective work on our new Dementia Advocacy and Support Network http://www.DASN.org testifies to our problem-solving capability.

But the cognitive impairment of Alzheimer's does pose special threats to the self beyond those of terminal cancer, and even beyond those of terminal brain cancer. Laurence Miller in Psychotherapy of the Brain-Injured Patient: Reclaiming the Shattered Self comments: "As a clinical observation most brain tumor patients, even many of those with massive infiltration and multiple sites, seem to retain their core personalities and identities until close to the very end; cognitive and personality disintegration seems much more a characteristic of Alzheimer's disease than of the external assault inflicted by tumors on an otherwise healthy brain." Couldn't the reason for this depressing observation, however, be that cancer is _conceived_ as an external assault, such that one can go down fighting, whereas to have Alzheimer's is to think of oneself as a victim? I propose that by adapting the aggressive coping methodology cancer patients have employed (e.g., in David Spiegel's Living Beyond Limits) we too may be able to retain our "core personalities and identities until close to the very end."

One way to cope is the how-to-eat-an-elephant formula--one bite at a time! An Alzheimer's diagnosis is at first overwhelming, but it seems to me that it is like having four other medical conditions simultaneously--and with each of these persons have learned to cope successfully. These are cancer, chronic fatigue syndrome, epilepsy, and deafness. Alzheimer's is like epilepsy in that we might be unpredictably "out of it." This makes us unsuited to be air traffic controllers, but most of us never were suited for that and did not feel our "selves" were thereby diminished. Seriously, we have to limit or renounce driving or baby-sitting for grandchildren, and these are sad losses, but being unreliable in emergencies does not mean that, given time and the opportunity to limit and manage stress, we cannot make deep and wise decisions. Epileptics may be unable to safely drive or baby-sit, but that doesn't lessen them as persons.

Alzheimer's is like deafness in its impairment of participation in conversations. We have become turtles in a world of rabbits. But Helen Keller had to live in the slow lane, and she was not less of a person. Our inner life is slow too, but that doesn't mean it has to be shallow or childish. I've found reading Jean-Dominique Bauby's The Diving Bell and the Butterfly to be a good antidote for self-pity. He had a brain-stem stroke that left him almost totally paralyzed (in a "diving bell") but his cerebral cortex was intact and his mind could take flight like a butterfly. Nevertheless, he could no longer hug someone. He could no longer say, "I love you too." Though my mind is like a turtle in comparison to his butterfly, it's hard for me to complain. Further, I feel that, despite my deficits, my capacity to understand a situation like his is unimpaired, or perhaps even enhanced. True, I cannot gobble a book like I used to. To compensate for my reading and memory impairments I have to, as it were, take small bites and chew them thoroughly. But when I've done that I cannot only empathize with how his mind works (like mine did for fifty years), but identify with his situation as a fellow sojourner in the land of catastrophic illness and with his poignant grief for the world he left behind. In reading this book, I am acutely aware of having lost my mental agility, yet I feel my heart and soul are intact.

I think we who can't keep up can become more sensitive to what's slower and deeper, to kindliness or peacefulness, or to hypocrisy. (Oliver Sacks, in The Man Who Mistook His Wife for a Hat has a beautiful chapter on this.) When I was at the World Alzheimer Congress I was talking with a fellow presenter about his research on the effect of youthful mental activity on later Alzheimer's, which raised an interesting question of causality vs. correlation. I could no longer think on my feet about such things, but I was surprisingly sensitive to my interlocutor's tone of voice and the information it conveyed about how well _he_ had thought the matter through.

So, like persons with incurable cancer or ALS who survive for years, we with Alzheimer's can come to a place where the disease is part of our lives but doesn't define us. (Those of us with a fighting spirit need to avoid the pitfall of becoming "professional survivors.") Then we can continue on with the basic tasks of our lives, with, say, singing our own song or developing our relationship with God.

Finally, it is good to remember that we are not the only ones threatened with the "loss of self."  Often members of oppressed and impoverished minority groups succumb to addiction or despair.  Yet there are exceptions, and this poem published by Langston Hughes in 1922 can inspire us:

MOTHER TO SON

Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor--
Bare.
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now--
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.

Write me: MorrisFF@aol.com

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