Reflections from a Carepartner…

Care Partner Versus Don’t Care Partner

by Marc Jaffe

My wife has Parkinson’s. I’m her “care partner.” Or sometimes, I’m her “don’t care partner.” It all depends on whether she wants me to care about how she feels or not.
It’s not always easy to know which she wants me to be.

For example: If I notice her gait isn’t right when we’re out for a walk, I’ll know to cut it short. Care Partner.
If I ask her whether I should drop her off at the theater door because I’ll have to park a block away, she might shoot me an incredulous look that says, “It’s ONE block away! I have Parkinson’s, I didn’t lose my legs in a war.” Don’t care partner.
Seeing her tremor significantly and asking if she remembered to take her 2:00 Sinemet. Care partner.
Following a long bike ride together, asking her every 12 minutes for the next week whether she thinks the exercise helped control her symptoms, until she finally shoots me a blistering look that says, “Quit asking! I have Parkinson’s, I didn’t lose my legs in a war.” At which point, you wonder why she seems to keep using that same reference, but you shut up. Don’t care partner.
Of course, partners without a disease in the mix also face this nuanced balancing act. Do I tell my partner that they’ve put on noticeable weight and need to skip dessert, or just keep quiet, hoping that they will do something about it if they come to the realization on their own? In that case, don’t think of it as being sneaky by hiding a stash of chocolate, think of it as being a good care partner.
But throw in Parkinson’s and it all becomes more complicated. The challenge for us partners is to find the right calculation between “Care” and “Don’t care.” We will need to encourage our partners to exercise without crossing the line into nagging. We need to join in participation without being over aggressive or, on the other extreme, sacrificing our own personal health goals. We’ll need to show we care without always asking how they are feeling. We need to let them have a piece of chocolate from our stash sometimes. We don’t need to tell them where our stash is hidden, for God’s sake. Let’s not get crazy.
We also need to have a sense of humor about things. I’ve never found a scientific study that conclusively says that humor can make a positive physiological difference. I’ve also never known any person that didn’t agree that laughter is good for you. So, I’ll go with the anecdotal evidence here and say that keeping a positive, light-hearted attitude will help you in the years to come.

I hope it goes well for you.
Remember, I care.
Or, I don’t.
It depends.

Posted in Dr. Karen Jaffe, For Care Partners, For Clients.
Dr. Karen Jaffe

Dr. Karen Jaffe

Karen Jaffe is a retired Ob/Gyn who was diagnosed with Parkinson's disease at age 49. She practiced medicine for 25 years and cared for countless women and their babies. Her current experience as a patient has given her a new perspective on medical care, now from the other side of the patient fence.