fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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A Disease with Two Victims

One of the first house calls I made during my internal medicine residency many years ago was to visit Mr. R: a 70-year-old veteran, retired electrician, devoted grandfather, and church volunteer who’d shown signs of memory loss for six years. His forgetfulness was initially dismissed as “senior moments.” Then he forgot his wife’s birthday—something he’d never done in 40 years.

The turning point came when he got lost after picking up his grandson from school. They were finally found two hours away, where a flustered Mr. R had been driving in circles. Taking away his car keys was traumatic, and subsequent memory testing confirmed a probable diagnosis of Alzheimer’s disease.

His wife, a pediatric nurse, took it the hardest. She left a career she loved to become his full-time caregiver. By the time I visited him with my senior resident, he was homebound, relying entirely on caregivers even for basic needs. He no longer recognized his wife, which deepened her grief. Eventually, he became incontinent, wheelchair-bound, and agitated during meals. Honoring his wishes, the family declined a feeding tube and he passed away on hospice.

I still remember his wife’s tearful words: “We planned to rent an RV and travel the country at 70. Alzheimer’s robbed me of my husband long before he died. For years, he didn’t know me, our children, or grandkids. Why did it take so long to diagnose? Why wasn’t there more help for him—or for me?”

Her pain, on top of having witnessed my own grandmother’s memory loss, left me feeling helpless. Alzheimer’s is vastly underdiagnosed in its early stages: “the eyes do not see what the mind does not know.” That realization led me to forgo a gastroenterology fellowship and pursue geriatric medicine instead. And I have come increasingly to see that this is a disease with two victims—the patient and their caregiver.

I often wonder: What could we have done differently for Mr. R if we were caring for him today instead of 25 years ago? At the time, his town lacked a memory care unit, and early-stage medications and supportive resources were not readily available.

Alzheimer’s is a perplexing disease, and caring for both the patient and the caregiver takes a compassionate village. Mr. and Mrs. R didn’t have the village they needed—but today, there is hope for those in their situation.

Neeta Nayak
Richardson, Texas

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