Magazine article Queen's Quarterly

Alzheimers Disease: What Would Shakespeare Do?

Magazine article Queen's Quarterly

Alzheimers Disease: What Would Shakespeare Do?

Article excerpt

Alzheimer's patients can have no measure of consent given back into their hands since they have a severely reduced ability to think about their own care. Neither would their situation be significantly improved by surrounding them with people who love them. Such an innovation would increase the number of the people charged with giving consent on behalf of the Alzheimer's patient, but it would not give any authority back to the patient herself. There is another way to come at the problem. Shakespeare can lead us to an understanding of how severely impaired persons could recover something akin to intelligibility and the power of consent. Not the same, but similar enough to be worth the work of invention and cultivation ...

No Mother Is an Island

MY MOTHER has Alzheimer's disease. When she celebrated her ninetieth birthday, I made her a party. I ordered the biggest chocolate ice cream cake they had at the Dairy Queen. There would be plenty of cake for the other residents. My mother's 94-year-old sister Ruth was coming. So were Ruth's twin sons, Ruth's daughter, and their partners. My wife was coming. I even bought party hats.

But all day I was in distress. My mother's Alzheimer's has taken her ability to recognize other people and her awareness of herself as an individual. She doesn't have control of her body. She does a lot of spasmodic pushing, pulling, grasping at clothing, furniture, food. When I visited her the Sunday before her birthday, she was worse than ever. She has to be restrained in her wheelchair so that she doesn't break her pelvis again. Her speech is mostly gibberish. Imagine that language is a splendid airliner; Alzheimer's language is the scattered debris of a plane that has fallen out of the sky.

It was certainly the right thing to do, to make her a birthday party, but it was also like a dark joke. A birthday party for someone who is dissolving into scattered words, flights of noise, and a repertoire of twitchy movements, whose aged body is the only trace of the person who had once been vitally present in the world.

But the afternoon turned out differently than I thought it would. Something happened that made the event a true celebration. Nothing miraculous, but something memorable and good.

What happened is that the presence of her sister, her nephews, her niece, their spouses, her son (me), and her daughter-in-law-the way we all embraced her (awkwardly because of the wheelchair); all the talk, much of it directed at her; the phone call from her 95-year-old friend Rosie (Rosie led us in singing "Happy Birthday"); the phone call from her daughter in Vancouver-all this directed energy, touch, song, fellowship, family, and love worked to pull her personhood together out of the shards and bits of wreckage scattered across her plaque-ridden brain and decimated body.

Bits of her language began to reassemble themselves. She spoke several sentences to my sister on the phone. She asked her when she would visit. She said something intelligible to her own sister. She looked right at my cousin Gordon. Then she said, "Gordon." She recognized him and said his name.

Don't let me mislead you. My mother did not suddenly appear as the whole person she once was. And I don't want to suggest either that dementia is some kind of locked-in syndrome. You know, like in that wonderful, terrifying movie, The Diving Bell and the Butterfly, where the person is locked inside his body. He is there but cannot move or express himself or connect at all with others. My mother is not there in any strong sense of the word. Her demented personhood is radically transient-there for one or two seconds and then gone again.

Of course, we might be more like her than we usually are willing to admit. More transient, on-and-off, made up by will and faith rather than created as steady, coherent beings. Maybe we are the scattered debris of planes that like to imagine themselves as shining, soaring aircraft. …

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