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Neither Fully Widow Nor Fully Wife

Apr 17 2014
Alzheimer’s puts caregivers in painful in-betweens.

Last week, I observed two examples of loving service at the dinner table. At one end, my sister-in-law smooshed peas in a plastic bowl for Beatrix, the newest member of the family. At the other, my grandmother sliced steak into pieces for my grandfather, who can no longer manage both knife and fork. Both women performed the same task, but for different reasons and with vastly dissimilar expectations.

My sister-in-law will experience joy as she watches my niece master new skills and learn new words by the chubby handful. But for my grandmother, the outcome isn't so promising, as her husband will continue to lose abilities with each passing year. She is one of 15 million people in the United States caring for someone with Alzheimer's or another form of dementia.

According to a recent report by the Alzheimer's Association, more than 5.2 million Americans are affected by this disease, and the number is expected to climb to 13.8 million by 2050.

Women bear the brunt of this illness in more ways than one. Not only are we more likely to be diagnosed with Alzheimer's disease, but we also shoulder the burden of being primary caregivers. (Between 60 to 70 percent of people nursing a loved one with this condition are female.)

Sadly, despite the fact that this disease is now the sixth leading cause of death in the U.S., Alzheimer's research receives a fraction of the funding apportioned to cancer, AIDS, and diabetes, Newsweek reported. This disparity led Seth Rogan (a self-proclaimed "lazy, self-involved, generally self-medicated man-child") both to create Hilarity for Charity, a foundation to help raise awareness about the disease, and to testify before a Senate subcommittee about the need for increased funding. "Americans whisper the word Alzheimer's," he said, but "it needs to be yelled and screamed to the point that it finally gets the attention…it needs."

Much has been said concerning the patients—of their right to live with dignity and value though they can no longer contribute to society in the ways they once did. However, what of those who are asked to surrender their lives to serve them?

When it became apparent that my grandfather was vanishing, collapsing in on himself, my sympathies were wholly his. In fact, though I am embarrassed to say it now, I was frustrated by my grandmother's initial impatience and frustration—what I believed was an unwillingness to "face facts" and "suck it up." This is what we sign on for, I'd tell myself. This is the "for worse" part we know will come. Why can't she understand that?

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