Last week, we lost screen legend Gene Wilder to Alzheimer’s disease. We send our deepest condolences to his entire family.
We also learned that, years ago, Wilder and his family had chosen to not go public with his diagnosis. I was listening to an NPR interview with Wilder’s nephew, and he said this: “(My uncle) made a personal decision and then a family decision not to disclose the disease. This decision was not as a result of vanity. There were times we would go out to dinner as a family and children would light up at the sight of him and smile. And because he never lost his instinct or sense or sensibility, it occurred to him that if that disease were made public…that then after that smile, some parent may then say something about disease or sadness. And he was such that he could not bear to be responsible for one less smile in the world.”
To hear it put in these words, it’s hard to argue with their decision. It makes sense. It’s thoughtful and authentic and forward-thinking. And of course, I fully understand and respect their decision.
At the same time, I have other questions running through my mind around this. I wonder, is there value in encouraging other noteworthy individuals and their families to share their dementia journey with the world? Would it help normalize it for the rest of us?
By sharing their experiences with the rest of us, perhaps they can play a special role in obliterating the unnecessary stigma of Alzheimer’s, luring families out of their self-constructed isolation and leading them to the resources they need and deserve.
Entire communities like The Ivey await, with arms wide open, ready to help care for those living with dementia and to support the family caregivers who stand beside them. And one day, this spirit of openness will lead us to discover the cure that will ultimately end this epidemic.
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