October 10, 2009 by David Gillaspie
Beatin’ Ain’t Cheatin’
1. Does a family caregiver install air conditioning in the front room of their house while their loved one’s room bakes at an even one hundred degrees in summer?
2. Do contractors install water features near the front door of the family caregiver’s house while their loved one waits for a shower?
3. Will visiting family find new furniture in the living room while their loved one sits jack-knifed over in a wheelchair, alone in a back hallway? It works in an Edgar Allan Poe story, but where else?
This was my father in law’s life during the institutional phase of Parkinson’s. His assisted living facility was a fine place. The living part was nice; the assisting part was lacking.
A confused man may stand up, and a confused man with Parkinson’s may stand, but neither one for very long. Ken took a header in the head. It turns out even a man living in the fog of dementia knows that two hours on a toilet is too long.
How long do you have to ring that bell?
He went to the hospital for evaluation where he was deemed too weak to return to assisted living.
Medical rehab admitted him to build his strength. Somehow he was strong enough to get out of bed unnoticed and take another dive. Beds in the facility didn’t have side railings that slide up and down because they are considered restraints.
Medical rehab isn’t about restraining patients. They’re not about face plants either. Finding common round is not easy.
Institutional living monitors vital signs and fluid levels, constantly checking major systems. It’s like a full service garage with factory-trained techs; where one tool works on many models. They use floor lifts instead of bumper jacks to look under a car.
Family caregiving leans toward the shade-tree mechanic. No lift, no jack, just a creeper and a flashlight to check the transmission. No warranty or guarantee either, just a promise that if it doesn’t work you bring it back until it does.
For example, family caregivers don’t provide nuclear medicine procedures that follow newly introduced isotopes circulating around the body until they collect near a hot spot of rapidly regenerating cells. It’s an exact way of defining cancer, but that fifth wheel trailer isn’t parked in anyone’s driveway.
Good insurance gives your loved one CAT scans, PET scans, and more scopes than a fleet of submarines. Bad family caregiving leaves the treatment plan up to the doctor if patients are incapable of making their own decision. Medical tests reveal problems, doctors give options, families and family caregivers decide on solutions.
Let the doctors and techs give your loved ones the tests they need. That’s their job. Your job is to log the results then research the suggested treatment. Help doctors by being informed.
After we turned down chemotherapy for my father in law’s stomach cancer we learned his was a ‘good cancer’, the sort of cancer you want if you have to get cancer. The same couldn’t be said about his Parkinson’s.
Opting out of treatment isn’t taking food off anyone’s table; neither is refusing further testing. When your loved one comes to the point of comfort care, make them comfortable. Keep the faces they see and the places they go familiar.
Passing the family caregiver test requires that their loved one’s heart beat in peace. It’s not something you can cheat on.