I wrote this during a blizzard, on my phone, in the middle of the night, this winter, and forgot all about it. Discovered it last night.
In a snowstorm thinking about Alzheimer's Disease. It never goes away. Wondering: is it worse to have it or to watch someone have it? My Dad knew--he always said, "the thing in my head is killing me"--but I don't think he ever understood exactly what "that thing" was.
Watching him die like that--the longest 3.5 years of my life--has taught me there can't be any hell in the afterlife. Alzheimer's is hell. When you get to the point that, if you have a prayer, that your prayer is for your loved one to die and free you both, that's hell right there.
It's great that that initiative got passed and got AD some attention. But what we really need is a realty show where you get to see a grown man peeing in the hall or in the closet because he's forgotten where the bathroom is after 35+ years in the house. Or peeing his pants because he's wandering around looking for bathroom, and then crying in shame. Beating his wife. Attacking his daughter. Locking his family out. Screaming that people have stolen his money or his special things. Not knowing who his daughter is--but being able to recognize her car or phone number, but not why those things are special. Being taking away by the police for trying to kill his wife. Attempting to strangle a doctor with a stethoscope, then being literally tied to the bed. And brief moments of humor--saying that the butterflies are swimming. Hogging the puzzle pieces with faces or animals. Being in love with chartreuse shoelaces and coloring his sneakers green with a sharpie--and those sneakers going into the cleansing fire with him at the end. Thanking his daughter for his Alzheimer's Safe Return bracelet as if it were a lovely gift.
I want all that, good and bad and ugly, on TV for all to see and know. Until then, it's all right here on this blog.
Happy New year. May your days be dementia-free and your nights peaceful.
Living with Bob and "Al"
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