Plans in Case of Alzheimer’s

January 3rd, 2010 - Uncategorized

After those two hard stories in my last post, here’s something more heartening.

A friend of mine, Michael Daniels, who’s in his mid-sixties, has been thinking about his old age and who might be taking care of him. He’s perfectly healthy and his mind is certifiably sound, as you’ll read. But both his parents died with Alzheimer’s, and he’s concerned that at some point his own brain will come under attack. He’s single, he has no family, and like many of us he doesn’t want to be a burden on anyone, doesn’t want to drift into a long decline in a nursing home, no longer knowing who he is or having any memory of his past.

Michael’s goal is to escape what he sees (and what I see) as a grim scenario. He would rather die before falling into deep dementia.

I’m reminded of the plans made by the protagonist in Lisa Genova’s novel about early-onset Alzheimer’s, Still Alice. Alice is a professor at Harvard, only in her early fifties, but her mind is fast failing her. She knows where she’s headed, and doesn’t want to subject her family to a long period of care for a wife and mother who eventually won’t even know them. So she devises a test for herself which she puts on her computer, a series of questions:

What month is it?
Where do you live?
Where is your office?
When is Anna’s birthday?
How many children do you have?

If she can no longer answer these questions, she directs herself to go to a file in her computer, which will tell her what to do. She is planning a suicide.

I won’t give away what happens (read the novel), but the heart of her plan is to enable her to act when she still can, even though her mind is falling apart.

Michael, too, is trying to figure out a way to take control of his death when he no longer knows what he’s doing. His first step has been to establish a baseline of his mental condition, and to this end he has taken an extensive neuropyschological evaluation, administered by the Department of Psychology at Ohio State University. This was a four-hour set of tests and evaluations, far more extensive than Alice’s five questions—but the goal is the same, to determine, after future evaluations, at what point he will have passed some divide, with the knowledge that soon he will be unable to end his life, because he won’t remember his plan to do so.

Michael’s plan, however, involves help from his friends. He envisions a coach, or several coaches, who will help him when the results of his mental evaluations fall below a certain level. These neuropsychological exams are given all the time. My father had one, not as long and extensive as Michael’s, and the result was clear to the PhD who administered it: Dad had “advanced second stage dementia, most likely caused by Alzheimer’s.”

The tests are fairly dependable. Michael, or his coaches, will know where he stands.

The problem is figuring out what to do next. Michael is still working on that one. Alice, in Lisa Genova’s novel, plans to take care of it herself, by taking some pills. Michael hopes that his coaches will help him get to Oregon, where the doctor-assisted suicide laws might enable him to end his life.

One trouble is, you have to be a resident of Oregon for this to work. And most likely, you have to be of sound mind to request the suicide. There are some problems here. And Michael can’t simply ask friends to administer some drug when he no longer understands what he’s doing—for anyone who did that could be tried for murder. It’s a difficult question—but one many people have thought about. I have. What to do, in order to avoid years of life in the deep shadows of dementia?

“I’m just pursuing a plan,” Michael says. “It’s on the assumption that I’ll go somewhere where assisted suicide is legal—or perhaps it will become legal here.”

Michael has read Still Alice, and “if anything it enhanced my convictions to do something about this. The derailment of her plan is what encourages me to have a plan in place that cannot be detailed. The only trouble is that it leaves the coach vulnerable.”

Clearly, Michael does not have all this figured out. But who does? I find it fascinating that he has taken some steps, that he’s thinking about it, that he knows absolutely that he does not want to be living without his memories, his self-awareness, his ability to listen to stories and tell them himself. I’ll keep talking to him, and see where this leads.