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Quality of Life at the End of Life

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My father recently sent me a picture of my mother playing with a lizard. It was a Jackson's Chameleon, green and black with three horns on its head. You might think, how cute, or that she was visiting a zoo with children, or that she is an intrepid exotic animal lover. You might begin to question your assumptions, though, when I tell you that my mother has dementia, and the lizard was something she and her caregiver rescued from the side of the road.

Last night I had dinner with Kenny Fries, renowned disability expert and author of several books, most recently, The History of My Shoes and the Evolution of Darwin's Theory. We were talking about disability, and Alzheimer's, and a father's day article in the New York Times, by Katy Butler called "What Broke My Father's Heart" about a family's struggle with stroke, dementia, pacemakers and aging. We were both moved by the story. He had some issues, however, with the disability aspects, particularly with questions about quality of life, and who decides when a life is worth living or what the experience of that life is.

Kenny is a born disability activist. He was born missing bones in his legs. The majority of the rest of us, the "normal" ones, do not start life thinking much about disability. But we will all become disability activists eventually. Because, we are all on a life path that ends in disability. It is not other. It is, or will be, us.

This notion of disability as both ordinary and inevitable is part of what Kenny is writing about in his next book. Disability has entered my life in the form of my mother, just as it has for some five million people who have Alzheimer's, and 10 million unpaid caregivers who love them. These numbers are projected to explode, and I may become one of them. If I don't develop Alzheimer's, something else will happen to disable me (unless I fall off a caldera and am killed instantly). But if I do, I have my mother to look to for my future.

She has been losing her memory for 12 years. She can't feed herself, dress herself, put together a sentence. She needs full-time care. Yet she can enjoy her grandchildren, even if she doesn't remember their names. She laughs. She apparently likes lizards.

Would I want this for myself in a perfect world? Would I prefer the alternative of "assisted death" that author Terry Prachett is advocating for?

One of the strategies that Kenny Fries espouses is for our society to turn away from the "illness model" where we try to cure disability or treat it in nursing homes, and give assistance instead to families who are trying to help their loved ones live quality lives. The strain that Katy Butler's mother suffered, caring for her husband for seven years at the expense of her own health and life, doesn't have to be the norm. It is something my father would do, though we are not at that stage quite yet, but not something any of us would want for him. For the moment, he has managed to get some help from home caregivers who amaze me with their joy and patience and competence. They are helping my disabled mother to live a life of laughter and hugs and Jackson's Chameleons.

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