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How we think about Alzheimer’s and dementia

JRwatercolors_Page_01The prevailing narrative about Alzheimer’s and dementia pretty much focuses on the dark side—loss of self, the empty shell where someone used to be, a once vibrant person reduced to nothing, the sadness of those who witness and mourn their decline—and, of course the fear.

To which I say—yes, the disease is grim and no one wants to contemplate the fact that you might one day join them in the fog.

But that is why I write about Mom and the thousands like her.

When the KING5 story was shot, the producer asked me, “Don’t you think your Mom is unusual?”

I surprised him with my answer, “Actually no, I think Mom’s story is far more common than you think.” In Assisted Living, nearly all of the people on the second floor are living with Alzheimer’s and dementia. Nearly all are lovely, distinct, friendly, welcoming and joyful people.

Our emphasis on what is lost clouds our ability to see what is there.

With Mom that is a lot: her generosity of spirit, her mischievous sense of humor, her curiosity about nearly everyone and everything—especially the future. Her glorious smile. Her pleasure in all things is intact—perhaps even intensified.

This afternoon I visited Mom. I took bagpipe music—which she loves. Given her deafness, I wasn’t sure if she could hear it—let alone recognize it. Then she began to sing the melody of the piping—something long forgotten bubbling to the surface.

And the fear? I think it’s all about projection—about how we would feel in their place. But we can’t begin to imagine how we might feel in their place.

In a recent article in “The New Yorker,” Michael Kinsley expressed his fear. “There is a special horror about the prospect of spending your last years shuffling down the perennially unfamiliar corridor of some institution in a demented fog… Dementia seems like an especially humiliating last stop on the road of life. There’s no way to do it in style or with dignity.”

Many years ago, when my father was in the latter stages of Parkinson’s and Alzheimer’s, he surprised us with his desire to live. We had been raised to think that—in his place, his condition—life was not worth living. But as he put it, “You have to remember, life looks different from where I am.”

He’s right, Mr. Kinsley and you’re wrong. You should meet my Mother.

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