Alzheimer's and the fear of forgetting

by Joe Ferullo

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In the last few years of his life, my father dove deeply into a world of crossword puzzles, jumbles, and Scrabble. These were "mind exercises," he said, built to hold off the thing he feared most: forgetting.

Just a couple of months before he passed away, he called my mother desperately from his cell-phone. He'd pulled his car off to the side of the road, didn't quite know where he was, and couldn't remember the way home. That moment plunged him into a bout of depression and despair.

But my father did not die from the thing he really feared most: Alzheimer's disease. The forgetting was a normal part of getting older, and was probably aided by the small army of medications he was taking to fight off diabetes, emphysema, and various heart ailments. Alzheimer's, actually, should have been the last thing he needed to worry about.

He fears, though, capture something that has woven itself into our culture: Alzheimer's as the new plague, that thing dreaded most of all. In a moving column in The New York Times, Margaret Morganroth Gullette of Brandeis University, pleads with us to all calm down and to accept some forgetting as a typical human experience -- and not inevitably the first step on a road to something worse.

Her column struck a chord with me not only because of my father's experience. I'm guilty, too. All my life, I've been the kind of person who forgets things: when I was a kind, my older brother dubbed me "the Absent-minded Professor." I actually forgot to bring my passport with me to the airport on the morning my wife and I took off for our honeymoon. (We raced back to our place and barely made it back in time.)

I've accepted this and learned to become an obsessive writer-of-notes-to-myself. Little scraps of paper with words like "Bank," "School meeting," and "Call Tom Fox" litter my pants pockets on any given day. But lately, it all seems less funny. I've started to worry: have I reached some kind of forgetfulness tipping point, disguised by my lifelong dedication to absent-mindedness? While everyone in my family smiled indulgently at the boy who always left his homework back at home, has the (late) middle-aged adult begun to drift into early mental incapacity?

It threatens to become a preoccupation, like it was for my father. What scares me most, what scares so many and makes Alzheimer's terrifying, is the complete surrender of independence that comes at the end: not just the physical surrender of other ailments, but the surrender of memories and histories, of even the closest people and places. It's a disease that seems to pull the curtain back on your life and expose it as only a thin silk of events and relationships that can be torn at any time.

But it is also something more: the fraying of our family structure makes matters worse. Couples of my parents generation routinely took care of their parents right there in the home: however frightened they were of becoming a "burden," that fear was mitigated by care that came from sons and daughters in familiar and warm surroundings. Now take that fear and place it in a strange building, anti-septic and staffed with unknowns -- some well-meaning, and -perhaps- some not. Suddenly, this concern about Alzheimer's and where it leads is not so overblown.

Still, Gullette's column in the Times is a welcome antidote, a needed reminder to just exhale and take it all day by day. In my family, we laugh each time my brother (still) calls me the Absent-minded Professor, and every time we tell that story about my passport and my honeymoon. I'd like to keep it a funny story, and not a prelude to something else.

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