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Making Sense of Alzheimer’s is a creative space for people to understand the past, present and future of Alzheimer’s disease. It is an evolving forum, a gallery of ideas, a museum without walls.

The One I Know: Remembering Chopin

By Terrence Casey

 

In many ways, I consider myself lucky to have been young when my grandmother was diagnosed with Alzheimer’s disease. Spared the heavy burden of understanding her prognosis, I was able to create memories as any child would of the woman we called “Jo,” a Scottish term of endearment.

Even in adulthood, I struggle to recall Jo’s cognitive decline, but I remember everything else about her vividly.

…like when the weather turned warm, and my siblings and I would bike down Pennlyn Blue Bell Pike to her house for a spaghetti dinner and a Tastykake dessert.

…like when we’d look out over the Avalon marina, sometimes in silence, listening to the ropes whip against the masts, other times planning the party we’d like to throw on “that yacht over there.”

…like when she told me that if I were a good person first, all else would fall into place.

When Jo could no longer tell us the family stories, my mother or grandfather would take over, allowing her to confirm minor details along the way. Even as she contributed less or confused names and places, the practice continued, allowing her 10 grandchildren to focus on who she was and not who she was becoming.

Jo died in 2006, and her final years were tremendously difficult on the family. But the struggles of those years live in the shadow of our lasting memories of our beautiful grandmother, mother and wife.

It was this gift that was the inspiration behind a new Making Sense of Alzheimer’s project we’re calling “The One I Know.” The first submission — “Remembering Chopin” — is my own. Even late in life, Jo recognized and responded to my playing Chopin on the piano (no matter how poorly I performed). To this day, I cannot sit on a piano bench without seeing her closed eyes and peaceful smile in the corner of the room.

We’re inviting you to share your favorite memories of an older adult with memory problems (not necessarily Alzheimer’s disease). We encourage participants to share photos, videos or audio recordings to help tell the story. If you’re interested in participating, contact me at terrence.casey@uphs.upenn.edu or by calling 215-898-9979. New submissions will be added to the site monthly.

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