Parallel Lives
I’ve always been fascinated by the idea of parallel realities—what’s often referred to as the multiverse. I think most of us look back our lives and wonder what might have happened if we’d made a different decision at a crucial moment. Where would we be living now? Would we be on the same career path? In the same relationship? There’s no end to the questions inspired by a world of infinite possibilities, and it’s interesting to think about the version of myself that’s out there living her life in the alternate reality created by different decisons.
Since Mike started spending his days in a dementia care program, I’ve been living in a different sort of parallel universe. After I drop him off, I either go to campus (during the academic year), work from home, or just spend the day getting things done: I write, read, grade papers, make an appointment with the plumber, take the car for an oil change. I’m the person who’s in charge of everything now (including the day-to-day care of another human body—but that’s a subject for another post.) And every day, I’m living a life I know Mike can’t begin to imagine.
Quite often, as we’re driving home, Mike asks me what I’ve been doing since I dropped him off. No matter how I answer that question—very generally or in great detail—he offers the same reply: Wow, you’re always so busy! I realize my list of daily activities must seem unfathomable to him, given that he can no longer remember how to use his electric razor without some guidance.
In the before times, Mike was also an English professor. That commonality was the thing that brought us together, in graduate school. But teaching—not necessarily literature—was Mike’s great love. Given the choice between research/writing and working with students, there would have been no question about his decision. I’m pretty sure that’s one of the reasons we landed here in San Antonio: I was offered a tenure-track job at the university where I’ve been a faculty member since 2001, and Mike encouraged me to take that offer because he was sure that finding a teaching position wouldn’t be difficult in a large city. He didn’t care about tenure; he just wanted classes to teach, students to work with. And, as it happened, he had no trouble finding either one.
But in the fall of 2019—only 15 months after his initial Parkinson’s diagnosis—he had to take a medical leave from the university where he’d been an instructor for almost 20 years when it became clear that he simply couldn’t do the job anymore. He couldn’t learn how to use the online course management system—which is a problem, when you’ve been assigned an online course. He couldn’t remember where his classroom was, or what story he was supposed to be teaching while he was in class, or any details of that story. He couldn’t remember where he needed to go for a committee meeting, despite the fact that he’d been in that same meeting room dozens of times.
We’d been told that the vast majority of people with Parkinson’s experience some level of cognitive decline—but we’d also been told it was unlikely that Mike would notice any significant change for a least 10 years. So we were completely unprepared for his sudden medical leave, and for the retirement from teaching that came after it, when neurospych testing revealed the extent of his impairment. I tried to be encouraging, to point out all the things Mike would be able to do now: he could volunteer at our local library and animal shelter. Maybe he could write a book about his experience with Parkinson’s—or dictate a book that I could then write. In any case, he could be a stay-at-home husband and take care of all the stuff that needs to be taken care of when you own a house, just like our next door neighbor—his wife was still working, too. They could be men of leisure together.
But Mike didn’t want to do any of that. He wanted to teach.
The hardest part of his journey through illness was, by far, the loss of his job. So it was devastating—but also a bit of a relief—when I realized he could no longer remember having been a professor. Now, when I remind him of those years, he shakes his head in wonderment. That’s a reality he can’t even begin to imagine, much less remember.
Once in a while, after asking how Mike is doing and hearing a little bit about his struggles, someone will say “He’s so lucky to have you taking care of him.” But it’s not luck that compels someone to become a caregiver: it’s the inability to imagine doing anything else. When I find myself at the end of my rope (because of course there are moments when I do), I’ve started allowing myself to take those feelings seriously.
Okay, you can’t keep doing this. So what’s next? Do you want to start touring memory care facilities? Do you want to sell the house and use that money to hire full-time help?
I can’t imagine there’s a person in this world who would take better care of Mike than I do. And I cannot imagine visiting him somewhere else, then coming back to this house—where we have lived together, raising our children and building the family we love—alone.
At least, not for now. I recognize the day may come when those options are better alternatives for Mike, even if they aren’t what I want for myself. Caregiving, after all, is about letting go—about giving. Even when you don’t want to give up what someone needs from you.
“But you’d do it again, right? Even knowing everything you know right now, you would do it all again?”
That’s another sort of question people ask—but not too many people. No one asks that question unless they’re very, very certain of what your answer will be.
One thing I know about the multiverse is that any deviation from your current history sets off a chain of reactions you can’t anticipate: change one thing, you run the risk of losing everything. To save myself the pain of caregiving—of losing my husband one small piece at a time—would I run the risk of losing everything? My children? A house I love beyond all reason? The friends who feel more like family, who join hands to build a safety net for us whenever we need it?
Some questions are easy to answer: Yes, I would do this all over again. But I still like to believe there’s a version of reality where that question never comes up at all.