In addition to being a dementia caregiver, I’m also a writer and professor of English. I’ve published a novel and a bunch of personal essays, but this past spring I used my sabbatical from teaching to write a memoir. It focuses on the years between 2018 and 2023, beginning with my first inklings that something wasn’t right with my husband Mike and ending with the first “caregiver break” I took on my own after his diagnosis with Parkinson’s dementia.
I didn’t realize it at the time, but that trip to Santa Fe was my first step toward accepting how completely my life had changed. It wasn’t the first time I’d traveled on my alone—I’m actually a huge fan of solo travel, so I’d done it fairly often—but it was the first time I’d taken a trip with the explicit purpose of leaving Mike behind.
And I almost didn’t go. In the months leading up to that trip, Mike had experienced a handful of health concerns that made me nervous about leaving him in the care of our adult children. It wasn’t that I thought they couldn’t handle whatever came up (especially with the help of my copious caregiver notes); I didn’t want them to have to deal with anything scary or serious. I was still thinking of them as kids, still being a protective parent.
“It’s not like you’re going off the grid,” my son said. “If anything goes wrong, you’re literally a call or text away.”
“Just go,” my daughter said. “Everything is going to be okay.”
So I did, and it was.
I was early in the process of writing my memoir when I made that trip, but I didn’t know Santa Fe would be the endpoint of my story. That actually didn’t become clear to me until just this spring, when I had the time to focus my attention on a big-picture view of the project.
Many people have asked me how to write a book. What’s the secret? is often the form that question takes. But there is no secret. Writing takes a lot of different forms: some people outline, others don’t. (I was that high school student who wrote the paper first, then created the required “outline” from my finished product.) Some people write best in the morning; others do better work late at night. Some writers need complete silence in order to work, while others require background noise: silence is unnerving for them and, oddly, distracting.
What I discovered while working on this memoir is that the writing process—for me, anyway—seems to depend on the project at hand. When writing fiction, I’ve always needed to know as little as possible about the story; discovering what happened next for my characters was part of the engine that kept the story going in my head. The stories that failed were always the ones I’d thought about too much before I began to write them down.
But I drafted an outline for my memoir long before I started writing it. And, as I began to words into place on the page, as one memory sparked another, I often returned to the outline to see where those new memories might fit in.
Eventually, though, I started to move away from the outline and it stopped bearing much resemblance to the book that was taking shape. One day I found myself revising the outline, to make it match the manscript, and I laughed out loud when I realized what I was doing. It’s not like anyone’s going to ask to see your outline, I told myself, before I closed the document.
I also made myself spend much less time on the first draft of the manuscript than I normally would. I’m a great devotee of the beautiful sentence, sometimes to the point of being unable to finish a line because I can’t find precisely the right word or rhythm for the language. I knew I needed to finish a complete draft of the memoir while I was on sabbatical, though—there’s so little time or energy for big writing projects when I’m in the throes of teaching several classes each semester.
My goal was to have a complete draft done by the time I went to Hedgebrook in April, so I could spend that time in my writer’s cottage on a focused, careful edit of the book and get a clear sense of how well it worked as a whole. I managed to achieve both of those goals, but doing that meant writing a lot of deeply imperfect sentences.
Every time I found myself agonizing over a word or stuck on revising a line, I had to push myself to move on: Leave it alone. You can come back to it later. Just go.
That had never been my writing practice, so it was a very hard thing to do. But I did, and it worked.
The image at the top of this post is of St. Kateri Tekakwitha, patron saint of care for creation and a lifelong caregiver who—not surprisingly, given the amount of time she spent in the company of people who were gravely ill—died very young, in her early 20’s.
I’m not Catholic, so I knew nothing of St. Kateri when I first encountered her on the grounds of the Basilica of St. Francis during my trip to Santa Fe. But it seems fitting, somehow, that I met her in this moment. I might not even have taken a photograph of this statue of St. Kateri if the circumstances of my own life had been any different. I might have read the plaque at the foot of her statue, thought Huh, that’s interesting, and moved on without thinking about this woman who spent her whol life serving others.
Caregiving requires a number of sacrifices but, so far, I’ve been able to safeguard a life of my own. Writing my memoir—reclaiming my time and identity as a writer—was an important part of doing this. I didn’t know that when I started writing the book, of course. I’m a writer; I thought I was just doing what I do.
But, as it turns out, I was doing much more than that. I was teaching myself how to keep pushing forward when things aren’t exactly the way I’d like. How to give myself grace in those moments, trusting that there will be time to fix whatever really needs fixing. How to make peace with the knowledge that I can’t do my very best work all the time—but that doesn’t mean I should stop trying to do it.
How to just go, and trust that everything will be okay.
Although the manuscript of my memoir is complete, I’m still looking for a publisher. I’d be grateful to hear from anyone with connections to the publishing world!
Enjoyed reading as a caregiver and as a fledgling writer.
I, too, like to let my fictional characters develop on their own in my head. I'm glad you've got the memoir done. Looking forward to reading it.