Caregiver’s Corner is meant to be a resource and safe space for those caring for people with Parkinson’s. All our contributors have loved ones of their own with PD, and are sharing what they have learned along the way to benefit the rest of our community. This column will post the 4th Tuesday of every month.
Caregiver Self-care in the Moment
“How is Dave doing?” I can’t count the number of times I’ve been asked this question about my husband. And I can’t count the number of awkward, inadequate ways I’ve responded! Too little detail, too much, too depressing, too rosy, too self-pitying, too self-congratulating. But a few years ago, I landed on this response: “Way better than next year.” I don’t always say it out loud. But this, in fact, has become the heart of my caregiving and self-care perspective. The response is a bit of a brain teaser, and always requires a follow-up which is essentially this: Parkinson’s Disease is a progressive illness. Dave will likely be worse next year and so we are appreciating and taking advantage of all the things he (we!) can do right now. Embracing this perspective is a huge part of my self-care.
On one visit to the neurologist, we tried our way-better-than-next-year response to his how-are-you-doing and I am pretty sure the doc had mixed feelings about it. I think he appreciated our grasp of the progressive nature of the disease but he also wanted to be optimistic about his ability to help us—to make next year better somehow, or at least no worse. (We love him for that.) And yet…. The problem with both optimism and pessimism is that they both deal with an uncertain future. But today? Today we know exactly what Dave can do. And he (we) can do many things we are likely to lose in the future.
Try a little thought exercise right now. Look back a year to something your loved one could do that he or she can no longer do, even the smallest thing. Now imagine you could get that back. The thrill of it! You don’t know what you’ve got until you lose it, right? Next, think of something your loved one can do today, even the smallest thing. Now imagine losing that next year. Oh, wait, next year is a whole year away—he or she can do that today. The thrill of it! Now you know what you’ve got before you lose it. And now you can make the most of it.
These days, when I watch Dave get his socks on without my help, giving me a chance to get my own socks on so that we can go out into the world, I use this mantra: I am so glad you can do this today. I am so glad I can do this today. I am so glad we can do this today. Next year, when he can no longer get his socks on without my help, I don’t want to look back and say, Why didn’t I thrill to his ability to get his socks on, right up to that very last day he could do it? The magic center of self-care is knowing—and celebrating— what we’ve got before we lose it. Even the smallest things. I am not always successful at this. I often mourn the things we have lost and I become anxious about the things we are yet to lose. But when I am successful, I like Dave better. I like me better. I like us better.
As I finish writing this post, Dave and I are about to get in the car to go have lunch with our daughter at an outdoor restaurant. Years ago he would have arranged the visit, he would have done the driving, he would have ordered his own food and he would have eaten his meal without our help. This morning, he got his own socks on. He will walk to the car. He will help me get his seatbelt fastened. He will swallow the food we have cut up for him. He will occasionally contribute to the conversation. And next year, when I remember this lunch while I’m putting on his socks, I might say to myself, Those were the days, my friends. But then I’ll say, I am so glad you can fasten your shoes.