The Dementia Action Alliance is an international association among English-speaking countries. It was from this organization’s website that I learned that at least ten people have been doing what I have been doing: blogging about their dementia. And last weekend an acquaintance of mine notified me of an article by the organization STAT—a project of the Boston Globe to shed light on health and medical topics. This past week’s subject was dementia.
The article, written by Judith Graham, has a lengthy headline: “Don’t write us off: People with dementia press for more rights—and respect.” As Graham put it, channeling what she has learned about the organization, “Include us in conversations about our future, rather than making decisions for us. Help us participate in community activities, rather than locking us in institutions.” And “Let us weigh in on public policy.”
And, perhaps most important in the long run, “Give us adequate care” when we arrive at the final stage of the disease. Graham interviewed Mary Radnofsky, and like many of us, Radnofsky had a hard time getting an accurate diagnosis. The symptoms didn’t fit the standard version of Alzheimer’s disease. When she shared her diagnosis with friends, the friends tended to drift away, according to Graham.
This, apparently, is more common than I thought. I’ve been reading the Australian writer Kate Swaffer’s book, What the Hell Happened to My Brain: Living Beyond Dementia, in which Swaffer reported the same thing as Radnofsky: Many, if not most, friends, relatives and acquaintances distanced themselves after they learned of her diagnosis. Is Australia behind the curve compared to other English-speaking countries when it comes to dealing with dementia? Not necessarily.
Have I lost friends since I was diagnosed with Alzheimer’s? Maybe one or two, who moved away from the Boston area many years ago. But because I am comfortable talking and writing publicly about my illness, I try to dispel the stereotypes—part of Swaffer’s mission as well. Within days after my diagnosis, I circulated an email to my colleagues. My going-away lunch a week or two later was a jovial affair, helping to bring closure to a very challenging period of my life.
By then, I’d learned that Alzheimer’s is typically a slow-moving disease. It was around this time when I posted my diagnosis on Facebook. Within hours I was friended by Steve DeWitt, my former football teammate who, to my surprise, also had Alzheimer’s. We haven’t seen each other since 1979, but we stay in touch.
And being active with the Alzheimer’s Association, where I am serving on the organization’s board, at times I feel almost as engaged as back when I was working full-time, but without the corrosive anxiety during my last couple of years of paid work. And, yes, I know that many people with dementia miss practicing their vocations. That my skill set—writing and editing—is still largely intact is a gift I don’t necessarily deserve. But I will strive to continue to write this blog as long as my capabilities allow—though I may give myself a sabbatical at some point, should I feel the yearning to do a book-length treatment of my disease and the steps I am taking to forestall the inevitable.