WHEN KATE WASHINGTON UNEXPECTEDLY FOUND HERSELF filling the role of caregiver to her husband, Brad, who was diagnosed with a rare form of non-Hodgkin lymphoma in 2015, the couple and their two children found themselves facing a completely unforeseen version of the future.
“Every time I thought about the family life that we’d lost, I wanted to cry,” Washington writes in Already Toast: Caregiving and Burnout in America. “But if I started to cry, it seemed like I might never stop, so I stuffed those feelings down, crossed more items off my always-growing to-do list, and powered through.”
Washington, a food writer and a voracious reader of fiction, sought respite from her husband’s illness in literary classics: Jane Eyre, Anne of Green Gables and Little Women. She was surprised to find that each novel featured a character who could be described as a caregiver. “I couldn’t believe I never really thought of any of these as caregiving stories, which they totally are,” she says. “And that’s because caregivers tend to be overlooked and kind of in the back room and tending, and not really thought of as the agents of the story.”
Talk More About the Book
Through Dec. 21, we will be discussing Already Toast: Caregiving and Burnout in America in our online book group.
To spotlight the burden of caregiving in a broader context, Washington also incorporates data and outside perspectives to paint a picture of caregiving in the U.S. The book gives voice to understandable but difficult emotions as Washington strives to get her footing with each life-altering side effect from Brad’s continuing fight with graft-versus-host disease and his treatment for a second cancer—health conditions that were both caused by his life-saving stem cell transplant.
Washington recently sat down with Cancer Today to talk more about the themes of her book, and why she believes caregivers should be better supported.
CT: Why did you write this book?
WASHINGTON: I tried to write the book that I really needed to read when I was going through it. I hope it will give other caregivers who are struggling something to grab on to: a feeling of validation that I found hard to find in the existing literature. I didn’t see a lot of writing that really grappled with some of the negative emotions that arise for a lot of caregivers, or comprehensive information about the state of caregiving.
CT: Can you talk a little bit about where the idea to incorporate literature came in?
WASHINGTON: When Brad was sick, I started going back to my old favorite books because I didn’t have the concentration to read anything else. I was just tired. I was looking for comfort readings, so I re-read Jane Eyre and I re-read Anne of Green Gables and I re-read Little Women—all my favorites. I realized then that these books have significant caregiving stories that spoke to me about my own experience.
CT: You also incorporated other contemporary authors’ perspectives of caregiving, providing an interesting listing of books that highlighted different perspectives, including those of people of color. Can you talk about that?
WASHINGTON: That really arose out of my own experience and thinking about ways that I am representative of a typical caregiver. I am about the age of the typical caregiver. I am the gender of the typical caregiver. But I’m also white and privileged. There are different forms and types of caregiving, and different demographic situations that caregivers are in. There are cancer caregivers, but there are also other types of caregivers, such as those who care for people with dementia. I wanted to account for experiences other than my own, essentially, and take a look at the broader landscape and how people were or were not being supported in that work.
CT: In the book, you write about the basic human need of wanting to be seen. Given that your husband was going through so much, was it hard to write honestly about wanting those things without seeming selfish?
WASHINGTON: Sometimes it was difficult, and sometimes I had to pretend that no one would ever read the book, which I think is a little bit easier when you are writing and you know it won’t come out for a year. I’m not somebody who is super-open about my feelings. I don’t love to be vulnerable in many situations. For me, there wouldn’t have been much point writing the book if I couldn’t be real about those feelings. I have been fortunate that Brad is also a writer, and he’s very supportive of that honesty even with some of the difficult moments and relational parts that I depict in the book.
CT: Do you think we’re honest as a society about caregiving in general?
WASHINGTON: I think we’re getting a little more honest about caregiving. But on the whole, we’re not as honest as we should be. Some of the studies and figures that I write about reveal some hard truths that most people don’t even see. There’s this myth of self-reliance, and the fact of the matter is that nobody can be self-reliant. We’re all born needing care. Almost all of us will die needing care and will need it along the way. I think those basic truths are what most people bypass. There is this root dishonesty about our need for community, and our need for connection and mutual support. It’s shocking when you look at how family caregivers are just expected to give intensive, hands-on medical care for stuff that a generation ago would only ever have been done by people with much more training. I think there is a level of denial about how poorly our health care system is functioning.
CT: What is your advice for caregivers in a similar situation?
WASHINGTON: Ask for and accept help. Be the squeaky wheel. Rest where you can, and guard yourself, your identity and what you need as carefully as you can. I hate to say you have to take care of yourself, but you have to find people who will take care of you. Don’t be afraid to ask for the weird kind of help that’s actually helpful, instead of saying yes to another lasagna when your freezer is already full of lasagna.
This interview has been edited and condensed for clarity.
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