The Evening of Life   /   Fall 2018   /    Thematic: The Evening of Life

Neglected in the House of Medicine

Justin Mutter

A dementia patient; Brett Gardner/Alamy Stock Photo.

Health care’s political economy exists only for the disease. To the system, the person with the disease remains in obscurity.

“The White Coats Are Coming,” he announced with a wry smile. A fitting title for his book, I thought, but then found myself looking down at my own white coat, wishing I hadn’t worn it to my clinic today. Noticing my discomfort, he added kindly, “Well, I’ll have to write a different…thingy…for you.” I breathed an inaudible sigh of relief, and smiled back. I was off the hook. Maybe. When Tom, as I’ll call him, said “thingy,” he meant “another chapter in my book,” but in the course of trying to speak, had been unable to find the right words. He was fighting a condition known as primary progressive aphasia, most likely attributable to an early stage of dementia. Though he was gradually losing command of his words, Tom had decided to write a book about his experience with the health care system. Not to be sidelined by his illness, he had set a goal of finishing the  book before further decline in language made it impossible. He had a story to tell.

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