I suggest that we as carepartners celebrate. For years, I have strived for a routine, a daily schedule that would effectively blend the demands of Parkinson’s with Mike’s and my talents and abilities. After lots of tripping and falling, we have discovered what actually works and frees our minds so we can enjoy our accomplishments.
Tip # 1: Lose all unrealistic expectations that hinder success.
Not long ago, Mike could cut down a tree, chop and stack the firewood, haul the logs to the house and build a fire, practically with his hands tied behind his back. Today he can no longer cut, chop, stack or haul the wood. But he is sublimely skilled at locating a source of good dry wood to be delivered and stacked. He rolls the paper just-so. And then he strategically places the kindling under the logs and triumphantly ignites the fire with just one match.
Tip #2: Doctor visits.
Someone said that to be an effective caregiver, we must begin to think like a CEO. Take Charge of certain situations with confidence and empathy.
First, Mike and I prepare for his doctor visits beginning with a discussion about the best time of day for the appointment. A time when he will be alert and able to contribute to the conversations about his health. And, we write the appointment down on the calendar!
Second, We make a list of questions or changes–this is new to both of us but it is important. Under the best circumstances we will only get half an hour with any of his doctors. To make that time as productive as possible, we need to have our ducks in a row.
Third, With every doctor visit, I have to remind myself One thing at a time. Ask the question; wait for the doc to check his computer to verify information; write down the answer and recommendations. Next question, etc. I’m learning this process of patience because Mike needs me to. He can only do one thing at a time. Turns out the docs like it that way too.
I recommend a great book, titled Better, A Surgeon’s Notes on Performance, by Atul Gawande. This book helped me understand the (frustrating) time segments that doctors must use for billing purposes. More importantly, Better is a book that reminds us that doctors are human too and knowing that makes doctors more accessible. As an advocate and wife of a person with Parkinson’s, I’ve discovered that it’s critical to make you and your partner memorable to at least one doctor on your team. For a CEO it is the most powerful skill we can develop. And we get to do it!
Tip # 3: Medications and Sharing the Load
First do no harm: take the lowest effective dose of medication.
Then as carepartners we must strive to encourage our PWP
to do what they can–but just barely–accomplish with success.
In 2008 Mike underwent a major surgery and, for a while, had to take several extra
medications, all unrelated to PD. We panicked. I took over the assembly line
of his meds. I’ve heard from many caregivers that meds are the “worst.” In some
ways the management is tricky, and the swallowing is arduous. In other ways, it was relaxing to know he was getting
what he needed, when he needed it. Soon he shed all meds but Sinemet and Amantadine and
he wanted to organize his pill box himself. Occasionally, he is prescribed a new medication
and he adds that to his armament, until he feels he does not need it anymore. He is in control
of his meds–even to the point of searching the floor under the stove for a fast-rolling Sinemet–something he
can but just barely accomplish with success. He’s carrying his load. Pharmacies and drug companies are not sympathetic
to a shortage of supply, so every pill is gold.
Tip #4: Dignity: 1. Driving, 2. Bills, 3. Pills, 4. Dining
Awareness of preserving one’s dignity begins, in small measure, the day of diagnosis. It’s in the advanced stages of an illness–when carepartners evolve into caretakers–that attention to dignity moves to a top priority and becomes another powerful tool.
In the beginning, it might be the occasional help with buttoning a shirt, without complaining. Or wiping up the floor, after our loved one has spilled something, without drawing attention to our efforts. Occasionally reminding him of what day it is, leaving out our first and natural temptation, “I just told you . . .”
Fortunately for us, the stages of PD have come slowly down the road, so we’ve had time to adjust with some grace. Along the way I’ve become more and more aware of the futility of correcting mistakes, being right, reminding Mike of his deterioration. It gives me a headache to go over what is obvious to me and demoralizing to him. Double negative. I know the difference in how I feel when I let minutiae go and instead take a huge deep breath and use my energy to puruse compassionate, creative solutions. In the end, he’s not hurt and I feel somewhat accomplished.
Driving: Turning over the car keys is a big “Nut,” especially for Mike who has been driving and collecting cars since he was nine-years old. For two years, I’ve been gradually assuming the daily driving with the exception of his 1941 Dodge convertible, which he drove on occasion until just recently.
This summer on our book tour to Montana, he wanted to drive his Dodge over a stretch of I-90 in Eastern Washington. “One more time at full-throttle,” he said. “You know, horse to the barn?” There was no traffic at all but I was still uncomfortable. What should I do?
Mike’s daughter-in-law, Valerie, and his granddaughter, Amanda, followed behind us in our Prius, in case we had an emergency on our journey. I could have told Mike, “No!” Or, I could have said, “Fine, if you want to take that chance. Go ahead, but I’m riding with Val and Amanda, while you do it.” How would either of those choices have helped Mike? And, what harm could be done out here on I-90 between Spokane and Cheney? We stopped for a coffee at Starbucks and he took over the driving.
He did beautifully driving the speed limit, focusing on the road ahead. Then traffic started to pick up. When he needed to make a lane switch, I directed his every move. He was happy. We and other drivers were safe. Just as I was congratualting myself, he lifted his feet from the pedals and curled up against the door, yelping for me to do something.I could not understand him. He pointed to the car seat where coffee was pouring out of his cup onto his bottom. While I mopped up the coffee, he pulled over to the side of the highway, walked around the car to the passenger side and conceded that he truly can only do one thing at a time. We were lucky. For him the decision was not ambiguous. It was final and it was dignified.
Dignity Tip #2: Bills