Monday, August 10, 2015

The Often Misunderstood World of Caregivers' Humor

" 'Marry an orphan,' my mother used to say, 'and you can always come home for Christmas.' What she should have said was: 'Marry an orphan, or you’ll have four parents to nurse through every torment life doles out on the long, long path to the grave.' "  ---Margaret Renkl from the article "Caregiving: A Burden So Heavy Until It's Gone"

As my longtime friends have learned caregivers' humor, especially mine, can be a bit macabre and dark  at times.  I guess that's why my favorite film adaptation of "Alice in Wonderland" is Tim Burton's.   Finding humor in a situation that most would find scary, sad or depressing is a technique for maintaining your emotional balance when your world has become topsy turvy.

As a caregiver for a parent with Alzheimer’s or other form of dementia you watch your loved one go through a pseudo Benjamin Button experience.   Their body ages but their mind travels steadily backwards in time.    And while your logic and reason understands why you are pureeing your parent's food and changing their diaper,  your heart, and the child in you, can't bear to watch.

 When your parent is going through the terrible twos and doesn’t want to be changed, doesn’t want to eat, and basically treats you as if everyone is nicer than you, there is no time-out that will correct the behavior .   In fact, unlike the parents of young children who at least have the hope that their child will grow out of any behavioral issues and one day become individuals with whom they can reason,  dementia caregivers can only look forward to a day when their loved ones will no longer be tormented by any awareness that their brains and bodies have betrayed them.

This morning as I was reading Margaret Renkl's New York Times article,  the memories of caring for my own mother came flooding back.   If you've walked in those shoes I am sure that you can also relate to the following:

"There’s an art to helping people without making them feel bad about needing help, an art I hadn’t wholly mastered with Mom. 'I would’ve died if my mother had done this to me when I was your age,' she said when she moved in next door. But by the time she actually died three years later, we had both adjusted: 'I know I can be a bitch sometimes, but you can be a bitch sometimes, too," she would say. 'I figure it all works out in the wash.' 
    But as close as we were, I sometimes found myself despairing her long-lived genes. My great-grandmother lived to be 96; my grandmother lived to 97 despite being shot in her 70s by a drugged-out stranger. I knew my kids would one day leave for lives of their own, but Mom’s needs would just keep growing. By the time my nest was truly empty, I thought, there would be precious little left of me."

One big difference between Margaret and myself,  I've never for a moment despaired of my mother’s long-lived genes.  I have,  on the other hand,  had moments when I reflected on the quantity versus the quality of years and joked about being euthanized rather than living as a shell of my former self.

As for my often dry, macabre and apparently British sense of humor,  my close friends totally get it.  Thank God.  

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