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.
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