I ambitiously picked up two dirty plates from dinner and geared up mentally to make the long journey from our deck to the kitchen. “Let me take that” my wife said brightly. I was relieved, but instead of thanking her, I teased “You don’t trust me!”
And why should she trust me? She has seen me succumb to a Parkinson’s stumble while laden with crockery, and watched as the flying saucers, flatware, and other pieces of breakable or dangerous kitchen implements soared majestically across space, to their inevitable tragic end.
I was relieved that she was willing to take on the simple (for her) act of carrying a couple of dirty dishes 15 steps to the sink. At the same time, I was also irked at the knowledge that a task of such piddling magnitude was not something I was capable of without jeopardizing my safety and the safety of my cargo. Hence the teasing “You don’t trust me” instead of a gracious “Thank you” for her consideration.
This is an instance of the clumsy dance Parkinson’s choreographs for care partners and cared-for partners. The care partner’s question of “How much do I help?” butts up against the cared-for partner’s question “How much help do I accept?” It’s a delicate calculation because pride in one’s ability to take care of one’s self is on the line. I want to be an adult, and adults clean up their own messes. My desire for autonomy is compounded by my belief that the more I try to do, the more I will remain able to do. The more I rehearse my abilities, the longer I will hang on to them.
In this light, an offer to help, no matter how innocent and well-meaning, is a subtle undermining of my ability to cope with the basics of life, and a reminder that I suffer from a progressive breakdown of my ability to cope with things great and small. Meanwhile, for my wife, an offer to help is a gesture of solidarity, and a way to preserve our dinnerware, two perfectly honorable goals.
How do you strike a balance? Because PD is progressive, the balance will be a moving target, and because we each have a customized case of Parkinson’s, each of us will have to come up with their own solution, in collaboration with your care partner. Remember, your PD isn’t just yours alone. You share it with those who are good enough to stand by you. Tough as it is to swallow with Parkinson’s, if you can make life easier by swallowing some pride, then you should.
On a recent trip, I reluctantly consented to being pushed through the airport terminal in a wheelchair, a journey I would have preferred to make on my own two feet. This despite the fact it would have been slower and more stressful. After we were settled in at our gate, my wife thanked me for cooperating. Her point: It’s not all about me, my Parkinson’s affects her, too.
The sad fact is, you will be forced to give up some of your autonomy as PD progresses. You might look on accepting help now as practice for the time when you will really need it. It’s worth it to keep the flying saucers at bay.
by Peter Dunlap-Shohl
NW Parkinson’s Blogger
“It is the work of the creative to be a prosthetic imagination for the distracted and the dull”
– Maxwell Hubert Maxwell, playwright, butterfly collector, amateur surgeon and snob.