Last night I was visited by an Alzheimer’s factoid so simple and haunting that it wouldn’t let me sleep. It was passed on by Meryl Comer in her memoir, Slow Dancing with a Stranger, her story of caring for first, her husband, and then her mother, both with very high-needs Alzheimer’s dementia. Hers was a harrowing journey of well over 20 years of non-stop, sometimes simultaneous, home care for two very difficult family members. Protected by his good-old-boy colleagues, her husband, a world renowned scientist mentor to scores of fellow scientists and researchers, went undiagnosed for years. In the meantime, his personality changed disturbingly, and he became physically and emotionally abusive and paranoid.
Non-demented readers may remember that I started this story alluding to a troubling bit of Alzheimer’s trivia, and now what am I doing telling this whole other story?
Good point! I can only answer that the various pieces make some sense to me so far, and I’d like to ask your indulgence to listen as I try filling in some blanks.
OK, so what’s the factoid already?
Comer lets us know matter-of-factly:
“Only 50% of people directly affected by dementia are ever diagnosed!”
Why does this make a difference?
Try imagining your brain ever-so-slowly, imperceptibly, becoming unreliable. Your friends, colleagues, family members, co-workers, act like strangers. You have to check your phone to know the year and day of the week. They look at you strangely, criticize irrationally. You can’t figure out the restaurant bill for some completely unknown reason. The whole world is strange, every day.
Not to mention surprise visits that occur now on a daily basis, without warning.
I’ve had enough practice by now to know how freaky this is of a way to live. And I have the support of family and friends. I know that my brain is coming apart and it’s slow and painless….. At least I have knowledge and support to figure it out, and try to ride out the roughest waters.
I really can’t begin to imagine the alternative…having the world and all its bits and pieces turn on me, no longer safe…no longer at home!!
No better way to define terror….
Yes, I remember reading somewhere that people with Alzheimers experience fear as one of their most prevalent emotions. Terror says it even more clearly. If they knew what you were doing, Sky, then others with Alzheimers who aren't in as supportive an environment as you are would be giving you high fives and huzzahs for doing such a great job describing their experiences.
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