Caring doesn't have to destroy

kw: book reviews, nonfiction, terminal care

If you are going to help somebody, it's best if your "help" is really helpful. Ann Harleman writes of a wife who visits here husband in a hospice to feed him, though that is the nurses' job, "An admirable wife. But I have seen her husband's trapped look as she pushes the spoon against his tightly closed lips, and her own lips curving in triumph when she wins." This in her essay, "my other husband" in an uncertain inheritance: writers on caring for family, edited by Nell Casey.

Stephen Yadzinski in the closing lines of "called them vitamins": "For a while, I was there to help him get through. I was a tool, like his scooter. And then I was finished. Anyone would have done what I did." We all know, "anyone" probably wouldn't.

And in "the vital role" Amanda Fortini writes, "Nothing makes a person feel out of control—and illness is by definition loss of control—like having to cede it to another person."

Is it really possible to care for someone without emphasizing one's control? In recent days, the "Golden Rule" (do unto others as you want others to do to you) has been supplemented by the "Silver Rule" (don't do to others what you don't want done to you) and the "Platinum Rule" (do unto others what they'd want done), and my own, "Diamond Rule" (ask, and believe the answer).

In the hospital once, at a time I was to weak even to speak, or I would have, I heard the nurses wrestling with a loudly protesting man in his 80s, who was confused upon awaking from surgery with tubes everywhere, including a urinary catheter. They patronized him until I thought I was screaming inside (but I could only wheeze), forced him back into bed, strapped him down to put all the tubes back in, ignoring his screams, talking baby talk. He had a heart attack an hour later, and spent the next few hours, until his death, in the ICU. A little more caring in the "care", and he'd have lived another year or two. What's the harm to let him sit there for an hour or two while his memory recovers from anaesthesia? Too few nurses understand the length of time elderly folks need to regain their wits... Neither nurse asked a single question.

Well, I read an uncertain inheritance to find a spark of commonality with others caring for dying parents, and in similar circumstances. But the book covers a spectrum of caring scenarios, from a 5-year-old dying of a fulminating strep infection ("in the land of little girls" by Ann Hood) to cases of terminal Alzheimer's ("death in slow motion" by Eleanor Cooney). This latter essay mirrors my father's experience as my mother was slowly de-personed by the disease.

I admit I have a slightly morbid interest in the subject, because I expect to go there myself. My mother, her sister, their father, and one of their grandmothers (and who knows who else...) suffered this dementia. This version (Alzheimer's comes in a few varieties) appears to be genetically dominant. Thus, this poem I wrote during my mother's last days:

I held your father’s hand
   When I was just a little boy.
He needed help to find his way around.
He was like a friendly puppy,
   And he liked to be with me.
When I’d walk around the block, he’d come along.

The only time I heard him speak,
   I was nearly 12.
I was asking for some tweezers for a thorn.
He spoke up, & said, “I have some!”
   And he led me down the hall
To his tool bench at the back of the garage.

A retired piano tuner,
   He had tools of every kind:
Wrenches, screwdrivers, a tuning hammer, saws.
The tweezers that he handed me
   Were longer than my hand.
But I managed to pull out that thorn with them…

More than forty years have passed,
   And as we walk around the block
I must hold your hand, so you can find your way.
This is something in our family,
   They say it’s in the genes.
When it is my turn, who will hold my hand?