Planet Care

Where adaptability is your superpower.

Photo by David Menidrey on Unsplash

An apology to any readers who happen to be members of Gen X and started humming the B-52’s song “Planet Claire” when they saw the title of this post. I can’t promise it will be as much fun as the song.

Some years ago, Mike took care of me for several days after I’d gone through outpatient surgery. At one point I woke up to find the bedroom dark. I looked at the clock, but in my painkiller-enhanced state I didn’t understand what the time displayed there was telling me. Mike was beside me in bed.

“Is it today or tomorrow?” I asked.

“What?” he asked, half asleep himself. “It’s Thursday,” he said.

“Is that today?”

Mike laughed. “Yes. Thursday will be today, all day.”

That nonsensical exchange became part of the repertoire of inside jokes we shared as a couple (usually on Thursday mornings)—along with Mike’s observation, as the next few days unfolded, that we didn’t have to live by the clock. We could just sleep when we were tired, eat when we were hungry.

“We can live on our own little planet,” he said, “and just do whatever we want, whenever we want.”

During the worst part of the pandemic, as Mike moved steadily from Mild Cognitive Impairment to the early stages of Parkinson’s dementia, I remembering feeling like we’d gone back to that planet, a place that existed apart from regular time. The difference then, of course, was that everyone had retreated. We were all finding it hard to keep track of the days, to mark the shift from one to the next.

But then the pandemic eased up, and most people went back to Planet Earth. Once again, they started paying attention to the clock and the calendar that gave their daily lives a shape.

Not us. That was about the time Mike was diagnosed with Parkinson’s dementia and we moved in the opposite direction, toward the dark side of Planet Care.

When I scheduled my writing retreat at Hedgebrook this year, I didn’t even realize that I’d planned it over Easter weekend. That wasn’t a huge problem—my family hasn’t been part of a church community for quite some time, and the days of bunny magic are way behind us. At most, my adult children might have come home for a visit and Easter brunch. As it was, they cared for their dad in my absence; I had brunch with a group of fellow writers.

Time works differently on Planet Care. In scheduling that retreat, I’d been mostly concerned about finding a stretch of time that wouldn’t conflict with any of Mike’s scheduled medical appointments—or, when I realized that wasn’t going to be possible, finding a time that conflicted with things I could reschedule easily. I didn’t even notice Easter on the calendar, and I didn’t realize I’d be gone for a holiday weekend until my son pointed it out.

“But that’s okay,” he said. “We’ll make sure to do something special for Dad.”

I knew that comment was mostly made to assuage any guilt I might be feeling. My son knows as well as I do that his dad no longer recognizes holidays. When Mike has a day off from his dementia care program, I always explain why—it’s Memorial Day, or the 4th of July (or, in Texas, San Jacinto Day.) He’s likely to nod, but he no longer has any idea what those names signify.

On weekends, when we’re at home together, he’s likely to ask why we aren’t getting ready to go—he’s used to a daily routine that involves getting dressed and shaved and into the car first thing. I tell him “It’s the weekend. We stay home and relax on the weekends so the workers can have a break, too.” He nods, and maybe he does understand for the moment. But in a few minutes he’s probably going to ask, again, when we need to get ready and go.

My own days on Planet Care are mostly organized around Mike’s drop-off and pick-up times. Between those two poles, I pack in everything I can: commuting, teaching, writing, my own medical care, grocery shopping, vet appointments, napping (when I have the rare opportunity.) I do this with a focus on maintaining a consistent schedule for Mike, so he doesn’t worry about being left behind.

He knows I usually arrive after he has his midday snack; if I’m not there, he starts to ask when I will be. If I will be. And I don’t want him to have to worry about that for very long.

A few weeks ago, I read a really wonderful Substack post by Sue Deagle, author of The Luminist. In that post she makes a clear distinction between resilience and adaptability, and that helped me understand why I so often feel myself filling with rage when someone asks me how Mike is doing, then responds to my update (if I offer one) by saying something like “You’re so strong.”

Strong is, of course, just one of a million ways to say resilient—and the point of this observation is to assure me that I have the ability to keep bouncing back.

But one of the things you learn very quickly on Planet Care is that nothing will stay the same for long—that’s the nature of a degenerative disease, and it’s why resilience is useless here. If all you can do is “bounce back” from a challenge, you’ll be returning to a place your loved one has left behind. That’s a complete waste of energy.

Adapability is the superpower here, and it means doing things we might never have imagined while we still lived on Planet Earth—like, for instance, adjusting to the fact that we live on a different calendar and timetable than most of the people we care about. We might be up all night and sleeping when we can during the daytime hours, so we miss their calls. Weekends might be exactly the same as weekdays—or a little bit harder, for the person whose weekday helpers disappear to focus on their own needs.

And as for holidays—we might try to celebrate the most important ones, but the rest will pass us by. There are no federal holidays or three-day weekends on Planet Care. On those days, like all the rest, we’ll be doing the best we can to adapt and hold on.