October 16, 1998 (Ira Pilgrim)

Love and Alzheimer's Disease

Great love is born of great knowledge of the objects one loves. If you do not understand them, you can only admire them lamely or not at all; and if you only love them on account of the good you expect from them, and not because of the sum of their qualities, then you are as the dog that wags his tail to the person who gives them a bone. Love is the daughter of knowledge and love is deep in the same degree as knowledge is sure. Love conquers all things.

Leonardo da Vinci(1452-1519)

This summer I was visited by an old friend and colleague. He is about a dozen years older than I and was an established biologist when I was a student. At that time I depended upon him for advice, which he gave both freely and kindly. Now it seems as if we are the same age. That happens as people get old.

His wife of a lifetime had died not too long ago and he was still at loose ends. It seemed as if, like a pair of book ends, one could not function well without the other. She had Alzheimer's disease and her mind went inexorably down hill until there was little left of it.

He opted to take care of her until the end. He didn't think much of nursing homes and decided to take on the more-than-full-time job of caring for her. It is a task that I doubt that I would be up to performing. He told me that he took care of her for as long as a hug had some meaning for her. When she no longer cared whether she was held or whether she ate or drank, he did not push food and drink on her and let her die, which she did in relatively short order. A person cannot survive without water for more than a few weeks.

He said that some of his now-grown children didn't approve, but I did. His conduct filled me with admiration. It was as perfect an expression of love as I have ever heard. I think of his actions as being the noblest that a human being is capable of. It was also reasonable. There seems little point in forcing food and drink on someone who doesn't want it, nor in preserving life for someone who is no longer capable of wanting to live.

Not many people are capable of doing what he did. I don't think that I would be in similar circumstances. Making things more difficult for many is the fact that a person whose spouse has Alzheimer's may also be in poor physical condition and incapable of doing what my friend did. For a man of his age, he is in good shape. Also, a person with Alzheimer's often becomes unmanageable or so physically disabled that an elderly spouse can't handle it alone. For many people, a nursing home is the only practical solution. This is particularly true for people who have other responsibilities besides the care or a spouse or parent.

With Alzheimer's, that last thing to go is the will to live. A person may decide rationally that he doesn't want to degenerate to the point of total helplessness. But this decision is made while a person still has a functional brain capable of making rational decisions. That reasonableness disappears early in the progression of the disease. If you asked a patient in the middle stage of Alzheimer's whether they wanted to live or die, the answer would probably be that he wanted to live. This, despite a previously made decision that death was preferable to the progressive degeneration of the brain.

Such a dilemma faced some people in a relatively recent news story. The man with Alzheimer's was a physician who, with his wife, had decided that he wanted to die before advanced brain damage occurred. The children objected and the case was in the courts for some time. Dr. Kavorkian was brought into the picture. We have not heard what finally happened. It was an embarrassment to everyone involved and people (lawyers and judges)who really should have had no part in making such decisions were involved.

As always happens when a person has Alzheimer's, each person has to do what he has to do. That involves many factors, not the least of which is what he is capable of doing. I doubt that anyone can predict what he would do until he is actually faced with the situation. Then he will do the best he can. I would not venture to say what I think the best decision would be for me, much less for anyone else.

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