Alzheimer's disease · Bob Dylan · Burnout · Caregiver

“Knocking on heaven’s door” / September 16, 2006

Only over the past couple of months have I understood what is meant by “caregiver’s burnout.” Waking up each morning with a sick feeling in the pit of my stomach, going to bed at night with a head full of circling obligations and regrets. Catching myself in the middle of the rare pleasant experience and thinking, “Whoa. Not so fast–don’t get TOO relaxed…” Envying the person ahead of me in line at Target because I imagine that she lives the kind of trouble-free life I don’t have. What’s funny about the last statement is my knowing that no one actually has such a life–a couple of months ago I was waiting in line at Dunkin’ Donuts and ahead of me was a man I’d gone to grammar school with, many years before. I almost spoke to him but before I got up the nerve, he’d gotten his coffee and was gone. And then this past week I saw his mother’s obituary in the local paper: she had had Alzheimer’s Disease.

But part of the power of such intense, jagged, fear-ridden experiences as caring for someone with AD is the black-hole effect. Everything around you gets sucked in, everything else is somehow related to your troubles and assumes their nature. Even the relatively minor headaches–the car muffler coming loose or losing the brand new book of stamps you just bought–become “And now–THIS!!” moments. Reverberations of the primary heartbreak as it pounds away at you.

Months ago I’d bought tickets to see Bob Dylan perform locally. As the concert approached I became anxious–I couldn’t pull myself out of my tight little orbit. First of all, I’d have to arrange for someone to spend the evening with my mother–otherwise, I’d never be able to relax. And then I’d have to take responsibility for my friends’ evening–if I bailed out or had to leave early, I’d be spoiling the experience for them, too. Then I realized that the worst-case scenario would be if I actually began to have a good time and then had to face the wake-up call of reality. So I sold the tickets. As the Man himself says, “You Ain’t Goin’ Nowhere”…

Shadows are falling and I’ve been here all day
It’s too hot to sleep time is running away
Feel like my soul has turned into steel
I’ve still got the scars that the sun didn’t heal
There’s not even room enough to be anywhere
It’s not dark yet, but it’s getting there

Bob Dylan, “Not Dark Yet” from Time Out of Mind

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