October 6, 2009 by David Gillaspie
RED, WHITE, AND BLUE
Family caregivers are a selfish lot. They never leave well enough alone. If there’s a better way to do something, they’ll find it. Since my father in law passed from the accumulative effects of Parkinson’s, dementia, and cancer after five years, I hear a familiar comment from my family: “I’m not Grandpa.”
I hear this after explaining something simple in as many ways possible. The kids say it. The wife says it. My mother in law doesn’t say it, but I can see it.
Grandpa Ken came home from the hospital instead of going to a nursing home. The truth is he wasn’t going anywhere from the hospital. His doctor expected him to pass away in two days. I brought him home and treated him like a regular guy and he lived five more years.
It was an inventive five years. I started out by setting goals. If a Parkinson’s guy most likely dies from falling or swallowing food into their lungs, I checked that box. Ken wouldn’t die that way. I told him he’d have to do something different. We confronted the usual threats to his health in a direct fashion. I think he liked it.
Long term care produces something called pressure sores. Imagine sitting or lying in place for hours, days. We battled this one hardest. We got up and walked, pretending there was a bed sore chasing us. I narrated the final steps like it was the Kentucky Derby:
“There’s Mister Ken on the inside with Bed Sore making a move on the back stretch. They’re neck and neck charging toward the finish. It’s Mister Ken, it’s Bed Sore, Mister Ken, Bed Sore, Ken, Sore, and it’s Kenny by a neck.”
The only sore came from a most unusual place; our lap dog. And it wasn’t a sore on his lap, but his ankle. Turns out the dog liked sleeping on Ken’s feet. That’s different, but it is a dachshund and they are a different sort of dog.
Ken said he felt something on his ankle. He said it for a few days. I looked and didn’t see anything, no heat, no redness. Then one day it happened. I looked and found a sore. Not just any old sore either. It didn’t show much on the surface at first, but it was eating down to the bone.
Here I am feeling like King Caregiver, the one no one can tell anything to, and my guy looks like his foot is rotting off. I was over my head and called a nurse. The medical opinion was that this sore would never heal, that it would always be a risk. I beat myself up pretty good, then added bed sore to the top of the list of things Kenny wouldn’t die from.
The nurse left a patch kit and made regular visits to change bandages. I paid attention and started doing it. With my sterile technique and newly sharpened hawk eye on the dog, we beat the ankle sore. It was a grizzly sight, but it got better then went away.
How did I let this get away from me? Neglect. I was no better than a nursing home assistant, except I didn’t have ten people to care for, just one. And I screwed him up. I explained it to Ken and asked for his forgiveness. I was sorry, real sorry. And I learned the big lesson: I could either wimp out and see this failure as the norm, or man-up and fix things.
The first thing a family caregiver needs to fix is themselves. I got right on it.