August 24, 2011 by David Gillaspie
You’ve heard it before, “Hate the war, love the warrior”; “hate the process, love the results?”
Adapted for Parkinson’s, it becomes “Hate the disease, love the relationships it builds.”
Doctors treating Parkinson’s are the key relationship, but they need equally strong links to those in their patients’ lives.
One link of the doctor/patient relationship goes through the caregiver in the late stages. While the doctor and patient relationship builds, watch the caregiver to be sure everyone is on the same page.
Often a caregiver, especially the ‘heroic caregiver’, views the doctor as an opponent. Other times, they might see their doctor as unavoidable, but outside the boundaries of frank and honest communication.
Hopefully, it’s part of a plan.
I’m not too embarrassed to say I was a caregiver who chose sides. Since my father in law, Ken, had a fast progressing Parkinson’s, every day at home was a step in a new direction. The only way to keep up and stay balanced was centering care on him as if he didn’t need it. It worked well for us.
More than a few times a day I told Ken no one knew him better, that no one knew how he feels better than he did. Then I’d ask him how he felt and he’d say, “Fine,” and we’d laugh.
My work to keep him engaged and fired up about life often fell short, so I turned to other means.
First it was celebrity deaths. When Christopher Reeves and Bob Hope died, I told Ken they didn’t have the quality of caregiver he had. “If they lived in our house they’d still be alive, right?” I asked.
When we interviewed care agencies for respite workers, we were polite, but after they left we talked about who they’d be better for, Christopher Reeves, or Bob Hope.
And we laughed.
Eventually the medical establishment became the perfect foil.
My time with Parkinson’s came with a promise: if the disease kills with falls, or by choking and pneumonia, it would have to find another way with Ken. That put the focus where it belonged.
Please know that I was, and am, most grateful for the medical care Ken received, and I understand it was difficult to give him an identity besides Parkinson’s. Our running joke was the Mr. Parkinson’s contest.
Ken, his wife and fellow caregiver Judy, and my wife and kids, combined our families and followed where Parkinson’s led. We moved forward with humor intact.
After two years, I took a family trip overseas. I came back to find Ken moved to a nursing home from the arrangements made before leaving. He went from adult foster care where he fell, to the hospital, then a nursing home for recovery.
Except he wasn’t recovering.
After my first trip to the facility, I was disappointed in his condition, and started planning to bring him back home, planning his breakout.
This is when doctors need to communicate with family caregivers regarding their true intent if they want to avoid the awkward moments that follow.
The first part of the plan was making an appointment with his doctor. Ken took a wheelchair van; Judy and I drove to the doctor’s office. I explained my plan in the car.
Ken had dropped weight while I was gone and looked very frail, couldn’t sit upright in a wheelchair so he was loosely strapped with his head hanging down.
During his appointment, his doctor did the usual office checks, asked the usual questions. Judy, Ken, and I listened and answered questions together like a game of Jeopardy. When it seemed time to go to the wheelchair van and back to the nursing home, I asked the doctor to step into the hall for a word.
“Doctor,” I said, “Ken is in worse shape than he was two years ago when you released him to me. Two years ago you let him come home to die. I brought him back from the edge; I’ll do it again. I want to take Ken back home now, not send him to the nursing home. His room is set with supplies like before. Would you please call for his release?”
This is a good doctor, a sharp listener and observer. “Frankly, I’m surprised they released him to come to the clinic. He’s not doing well,” he said.
“If you can’t call them, then please call the police. I said hello to a security guy on the way in, he’ll do. I’ll leave peacefully. I just want Ken to know how far someone will go for him. If I get arrested for not letting him go back to the nursing home, I want him to see it. He’ll get a big kick out of it.
“It’s nothing about you, doctor, you’ve been great. I couldn’t ask for a better partner for Ken’s treatment, but make one call or the other. I don’t want to waste any of your time with your full waiting room.”
He rang the nursing home where a staff member checked the records and reported Ken as too fragile to go home.
“Fine, doctor,” I said, “if the nursing home won’t release him, then please call the police, or I’ll get the security guy. Ken’s meds ought to be peaking right about now. The longer we wait, the further down he’ll drop and miss it. Come on, make the call. I’m ready. I’ll wait in here.”
He shook his head, chuckling. I went back to the exam room with Ken and Judy and waited. I called Ken a ‘jailbird on the lam.’ He twitched his response.
Now, I agree it’s a bad position to put a doctor in, especially when Parkinson’s is horrible enough, but it was a moment to test this particular arm of the system with a touch of civil disobedience.
We were all very civil.
Ken’s doctor called the nursing home again and got a release. Instead of the wheelchair van, Judy and I put Ken in our car and drove him home.
That we laughed all the way home boosted Kenny’s morale for weeks. In a shortened memory, the breakout was a new reference point for everyone.
The next three years passed similarly to the first two, part of a busy household with high school student/athletes. Ken was one of them, working out. If a Parkinson’s patient isn’t an athlete before they get the disease, turn them into one as soon as possible.
A spastic bladder was an excuse to stand up and move around. Along with a bathroom break, hit a set of squats.
As long as Ken was up with his walker, why not take a walk? If things were feeling fine, why not walk a personal record? It’s time for a Prefontaine running story.
My rule was if Ken could move, he did. If he didn’t feel like moving, he still did, it just took more time. Extra activity helped him sleep better.
Some of Ken’s late stage activities: endurance walking (five minutes); shadow boxing (three one-minute rounds from a recliner); reaching and stretching; the hand slap game (where you turn your hands over before the other person gets theirs out of the way.)
If you encounter an aggressive homecare Parkinson’s team, it may be meds, life in general, or someone looking for an edge to compete against the disease.
You’ve got to give them that last chance.
Join them in making Parkinson’s a worthy opponent for the home team. Mention the breakouts you’ve heard of. Then, consolidate both for the best Parkinson’s treatment and create a bond science can’t explain, but you can.
“Hate the disease, love the relationships it builds.”
Ken Hensey passed quietly in his sleep one night; the need to push boundaries never does.