June 17, 2004

Mr. Reagan's funeral produced a great deal of commentary about Alzheimer's Disease. Supposedly his having suffered from it removed any stigma from the disorder and revealed it to be a physical malfunction just as most other diseases are. You'd think with all the publicity Alzheimer's has received over the past decade that everyone would know that already. But, I suppose, there could be some people who don't.

What surprises me about the reputation of Alzheimer's is that many people seem to think of it simply as a loss of memory. My mother, who was born about the same time as Mr. Reagan, also died of Alzheimer's. My wife and I cared for her at home during the final three and a half years of the disease, and it gave me a chance to observe the process more closely than most people ever can.

When people would ask me, as they often did, whether she still remembered me, I was always at a loss to know how to answer. Memory in Alzheimer's is really not the point. What happens is that the brain loses all desire to function. In my mother's case it was not so much a matter of her not being able to remember as it was of her not seeing any reason to remember. Until fairly late in her decline she could still read in the sense that if I pointed to words and asked her to say them, she could pronounce them well enough. But they didn't mean anything to her, or, if they did, I couldn't tell it.  She simply didn't perceive any use in words any longer. And, gradually, she reached the stage that she didn't perceive any use in anything. 

Certain basic personality traits remained. She stayed courteous until she became virtually comatose. If you said hello to her she would say hello in return. But then she wouldn't say anything else and it was clear she had no desire to say anything else.

Alzheimer's is a separation from the world as we know it. I'm not sure it's as terrible as it's generally made out to be. As far as I could tell, my mother never experienced any emotional distress about having it. It simply moved her farther and farther away from the world of human interaction. And she seemed content enough to go.

It does of course place a burden -- physical, emotional, and financial -- on people who have to care for Alzheimer's patients. It's painful to see your mother go away while she still appears to be alive. But the serious cost is not suffering but the loss of active, conscious life. Years when one might have been engaged with the world, might have done something that counted, are simply stripped away. And even the years that are not completely lost are still reduced, because in most cases Alzheimer's affects people well before their symptoms become unmistakable

It's to save those years that we should dedicate ourselves to finding a way to prevent Alzheimer's. Compared to their loss, the suffering that the disease causes is relatively minor.

©John R. Turner

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