‘Alzheimer’s Stole Her’: Changing Our Narrative About Dementia

My sister and grandmother, circa 1982

My sister and grandmother, circa 1982

My grandmother lived with Alzheimer’s disease for years. And for years, my family and I would say things like:

“Alzheimer’s stole her from us.”

“She’s not herself now.”

“She’s a shell of who she was.”

That’s our cultural narrative about Alzheimer’s disease and other forms of dementia — that it’s the aggressor. It has power over us, we say. It can take away our loved ones right before our eyes. If we’re lucky, we might catch a glimpse of them in the way they smile or the way they place a napkin on their lap. But most of the time, especially in the late stages, they’re gone.

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Or at least that’s how we’re programmed to see it.

I had the pleasure of listening to Dr. Bill Thomas speak in Pittsburgh this month. He’d just wrapped his Age of Disruption Tour, and was on hand to talk to care managers, health coaches and more at a regional Area Agency on Aging conference. At the end of his keynote, he addressed the subject of dementia, challenging everyone in the room to create a new narrative.

There are monks in the Himalayas who meditate for days to try to live in the present, he said. People with dementia are, in a sense, freed from the past and the future, and they’re living in this very moment. Perhaps, he mused, we should see them as Zen masters.

Successful relationships — marriages, in particular — require a certain amount of forgetting in order to move on. People living with dementia are, quite possibly, the best forgetters. And, he wondered, isn’t there something to be said for that?

Of course, dementia can be devastating. I’m not arguing otherwise. But I think we do our loved ones, like my grandmother, a disservice when we say that they’re gone when they’re not.

The truth is that they are changed, but they are still very much here. We just have to meet them in the present, which requires a rewiring of sorts on our part. Our expectations must change. We’re not going to have the same conversations we used to, or always be able to reminisce about shared moments from the past.

But we can make new ones today and tomorrow, and for however long they’re with us. We can still engage and connect and find joy together. Participatory arts programs like KAIROS ALIVE! in Minneapolis and the Alzheimer’s Poetry Project based in Brooklyn, N.Y., offer models for how to do this.

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Near the end, my grandmother couldn’t talk or walk, but we could dance. I’d close the door to her room and flip on a best-of-big-band CD. I’d turn and twist, and she’d follow me with her eyes. They’d get wide at particularly ambitious moves. I’d giggle, and we’d hold hands and sway.

Back then, I probably would have said that we’d lost her already. I know better now. She was with us until the day she died. And I still feel her presence. Alzheimer’s can never take that away.

Photo: Courtesy of Laura Hahn

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