November 30, 1989
Love is not love which alters when it alteration finds,
or bends with the remover to remove;
O, no! it is an ever-fixed mark......
Shakespeare, Sonnet CXVI
I recently spent a week with some relatives, one of whom has relentlessly advancing Alzheimer's disease. Unlike most diseases, Alzheimer's doesn't happen quickly; It goes on and on for many years, getting progressively worse.
I try to put myself in the place of her husband and try to imagine what it must be like to watch someone you love, very gradually slip away. First there are small lapses of memory, which are slightly embarrassing; then a thought can't be retained for more than a part of a minute. Eventually, complete oblivion for the mind, and the body curls up in a fetal position; if some other disease doesn't mercifully end the process.
The woman I visited with, often forgets who her daughter is. It is only a matter of time before she will not recognize the man she spent almost all of her life with. Once, while I was there, she looked at him and asked, "who are you?"
I try to reach into my own experiences for clues as to how I would feel if I were her husband. I remember the death of my father; but it happened quickly and he was as alive the week before he died as he ever was. His mind was sharp and his understanding profound. My mother had a few weeks of dementia before she died, but most of her mind was there until the end.
I had a dog and cat that I loved. I had them euthanatized when they seemed to be suffering. I believe in euthanasia when life becomes unbearable and an illness is incurable. --But life is not unbearable for a person with Alzheimer's disease.
In Alzheimers, the victim doesn't suffer much, if at all. There is no considering of "putting her out of her misery", because she isn't miserable. It is the people closest to her who are in pain, and their suffering is profound.
There really is nothing, in any experience that I have had, that corresponds to the Alzheimer experience. It is unique.
Up until the end, the loved one's body and face is the same. It is only the mind and behavior that changes. The woman I visited has her charm and sense of humor intact. Everything else seems all but gone. She doesn't really know who her people are, but she can still be coached; reminded that it is her daughter sitting over there on the couch.
I think that, if I were her husband, I would, as he is, put up with the problems; the disappearing tooth brushes, the dish liquid put in the refrigerator, the wandering about at night looking for the children. I would try not to look very far into the future, but would try to dwell in the present and the past. I would make a few plans for that time when she no longer recognizes me and approaches the state generally referred to as "vegetative". Some time before that stage is reached, I would have to remind myself that the "person" I am looking at is no longer the same person I had love for such a long time. It would be particularly difficult because she would look the same as she looked before her mind went.
I once met a woman whose optic nerve had been severed. She had cultivated the habit of looking directly at the person she was talking to. It was hard to believe that she was blind: that she was looking at me and saw absolutely nothing. In the same way, it would be difficult to look and talk to your spouse and have to remind yourself that she doesn't really know who you are.
A time will come when she will need round-the-clock care. It would either be at home, or a nursing home. Many people, at some point, decide to let someone else do it; to say "she doesn't know me and I don't know her, so I'll commit her to a nursing home."
In any very close relationship, such as a spouse, parent or child, a person actually becomes part of you. It is different from even a close friendship. At what point in the relationship can someone say "This isn't the person I married" or "this isn't my parent"? And it is necessary to say this before one can commit someone to a nursing home, sometimes against their will. The person looks the same, so one would think that they are the same. This is a mistake that all of us make about people. We think that because someone looks friendly, intelligent or honest, that they are. Every one of us has been fooled.
The process of decathecting (separating a person from yourself) is similar, in a way, to the depersonalizing of an enemy in wartime. If the enemy is a person like yourself, it would be very difficult to kill him. So we say that he isn't really human and it makes killing possible. This same process often occurs in divorce.
This morning, I looked into the mirror and asked myself "who am I?" Am I what I see in that mirror? If half of the nerve cells in my brain were destroyed, would I still be me? If three quarters of my nerve cells were gone, would I still be me? And the most disturbing question of all: will I still be me tomorrow?