Waiting on Memory

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When I allow myself to accept these other realities—Marianne’s I’m-an-administrator-here vision of her life—or when I myself create other realities—the ongoing fiction of phoning Eloise’s daughter—I begin to experience a shift away from disease, disability, and dementia, and toward “personhood,” a concept I read about in Dementia Reconsidered. Tom Kitwood, the geriatric psychologist who wrote the book in the late ’90s, believes simply and powerfully that “the person comes first,” that attention to personhood rather than pathology could, and should, revolutionize Alzheimer’s care. The book has had a major impact on Alzheimer’s care in Great Britain but not, it seems, in the United States. Kitwood’s idea helps me look at Marianne or Eloise or Hayes, or any of the others, as interesting people, not as—or at least not only as—victims of an illness. It’s not that I forget they have Alzheimer’s. It’s that the disease now does not define them. They are who they are and they have Alzheimer’s.

This doesn’t seem like a lesson I—or anyone else—would still need to learn. The disability rights folks have been telling us this for decades: I am a person with a disability. I am not a disability. I am not Jane Jones, the paraplegic. I am Jane Jones, and my legs are paralyzed. It’s not a matter of politically correct speech. It’s not semantics. It is a different way of looking at people.

The next morning cantankerous Frances M. is in a helping mood, which means I have to keep my eye on her all the time. When I disappear for a moment to take Pam into her room to use the commode, I return to find Frances M. wheeling Addie away from the breakfast table, only Addie is not ready to go. Her plate is full of food. She is grasping a triangle of toast in her hand. I smile, pat Frances M. on the back, and thank her extravagantly (maintaining her good mood is a priority) and wheel Addie back to the table.

When I look over my shoulder may-be a few minutes later, Frances M. is helping Hayes eat. She is feeding him hot cereal with a fork. The Cream of Wheat is dribbling between the tines onto his clean blue sweater and making its way in sluggish white rivulets down his front. I am about to rush over to shoo Frances M. away—I mean redirect her, as we say in the biz—when I realize something else is going on: Frances M. and Hayes are talking. The conversation goes like this:

Hayes: Help me. Are you helping me?
Frances M.: Oh yes. This is right. I’m ready now.
Hayes: My back is itchy. It is so itchy.
Frances M.: Deanne will be late for school. I have to do something.
Hayes: I’m Hayes. Hayes Bottoms. Everyone has a bottom.

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