After A Reading at Mac’s Backs

January 27th, 2010 - Uncategorized

Each reading I do from the book brings a new set of stories.

Reading at Mac’s Backs in Cleveland a few nights ago, there were plenty of people in the audience who’d had experience with Alzheimer’s patients. I’d chosen my reading selections for the night around one subject, coercion. It’s “the topic that fascinates me,” as I say in the book, “the one I never resolve.”

In the conversations we had after the reading, two people from the audience struck a nerve for me. One was a woman who was as adamant as my friend Sandy Weymouth in the book: Why, she wanted to know, should we cajole and force dementia patients to do anything? Why not let them choose to spend their days however they wish? Why force them to socialize, force them to attend different programs, force them to eat or drink? If they don’t want to eat, why not let them find their way out of life like that?

The second woman, much younger, worked as a recreational counselor in the dementia unit of a nursing home. In other words, she was someone who spent her days coercing Alzheimer’s and other patients to stay active, to stay involved. If she didn’t urge the residents to participate, she wasn’t doing her job. She liked working in the home, but she was fully aware of how much pressure she and others in the dementia unit put on the patients, almost around the clock.

I was fascinated to hear someone suggest that we just let Alzheimer’s patients drift away into their own worlds. This is a plan few people would accept—perhaps least of all those with relatives in nursing homes. Still, there’s an inherent logic to it, even a kind of respect. As it is, we treat people with dementia as if they were infants or very young children, and to me it often looks demeaning.

I didn’t come any closer to resolving the issue, but I was glad to hear it addressed, and to hear from someone who works, as they say, in the belly of the beast. In the nursing home, every assumption is that we are in charge of those with dementia, and we must manipulate them constantly to keep them involved. Yet when looking after a single person, a relative or spouse or friend, I think it’s rarely so easily decided. Every step of their care is debatable, or should be.

More than that, the entire topic is fascinating—and it’s that fascination which can turn a grinding and repetitive chore into an adventure.

Tags: alzheimer's, bookstores, caregiving, coercion, dementia, mac's backs