The Hardest Part

The hardest part of being a care partner for a loved one with Parkinson’s Disease is knowing there’s nothing you can do to stop the progression of the illness. There are meds that help to manage symptoms (some days better than others), but there are no treatments or surgeries that will stop what’s happening. And Parkinson’s is a degenerative disease. The person you love is going to get worse.

Actually, no, the hardest part is not knowing how the person you love is going to get worse. Parkinson’s is a disease that involves brain functioning, which means it affects all parts of the body—nerves and muscles, balance, gait, talking and swallowing, digestion, cognition. So the person you love might be able to walk just fine, but unable to swallow efficiently. (Many people with PD die as the result of choking or aspiration pneumonia. The person you love might eventually be one of them. Or not.) They might develop issues with balance, take a terrible fall, and wind up in a wheelchair. Or they might be able to get around pretty well on their own, but unable to do much of anything for themselves due to the tremors in their hands, which stop responding to medication eventually. And, while all this is happening, they may or may not be able to tell you what time it is by looking at a traditional clock—which requires the use of symbolic logic, something that often disappears as the result of cognitive impairment (which often crosses over into dementia) caused by PD. They may or may not be able to read a novel, something they used to love doing. But reading a novel involves remembering characters’ names and relationships, keeping track of plotlines, figuring out how all the pieces come together. And working memory–the ability to hold information in your head and do something with it–is often another casualty of PD.

Which reminds me of what’s really the hardest part: the fact that so few people understand Parkinson’s. That’s really not their fault, of course. You might not even know someone had PD if you didn’t see the cardinal signs (tremors, balance problems, shuffling gait.) I’ve learned pretty much everything I know about Parkinson’s in the last three years, mostly because I had no other choice. When people tell me Mike seems great!, I know they aren’t in denial or even, necessarily, trying to make me feel better. Mike does seem great much of the time. And that’s because PD doesn’t impact memory the same way Alzheimer’s Disease does. So, thank God, he still knows who I am, and who our children are. He can sometimes tell a corny joke that makes me laugh in spite of myself–not as often as he used, but once in a while. And yet, there are lots of things he can’t do now that he could do a year ago. Like, for instance, walk our dog through the neighborhood and make it safely home again. (We live in Texas, where people tend to shoot first and ask questions later. It’s just not safe for a big, disoriented man–even a white man–to wander into someone’s yard by mistake.)

And that’s why the hardest part about caring for someone with Parkinson’s Disease, now that I’ve really thought about it, is reminding the person you love of all the things they can’t do anymore. Things like driving, in spite of the fact that they were always the driver when you left the house together, and going for a long drive was one of their great pleasures. Or paying the bills—not so much because they enjoyed it, but because they knew how much you hated dealing with numbers, which they didn’t mind, and that was a kindness they could offer. Or climbing a ladder to change a lightbulb, or clean out the gutters, or do any of the around-the house jobs that used to be their responsibility. Many of these are jobs that can be hired out, of course, but that’s not the point: the point is, the person you love didn’t make the choice to give up doing these things. That choice was made for them.  

And that’s the hardest part of caring for someone with Parkinson’s Disease: knowing that the disease isn’t done making choices on their behalf and admitting to yourself that you don’t want it to be done. Because as hard as it is to watch the person you love do battle with a progressive illness, you’re not anywhere near ready for them to give up that fight.