Kate Washington, author of Already Toast: Caregiving and Burnout in America, provides care to her husband. We first shared Kate’s story through a special event called Caregiver Accounts: A Conversation with Kate Washington (click here to see the recording). Kate shares more about her caregiving experience in the interview below.
Tell us about your background and your experience as a family caregiver.
I became a caregiver to my husband Brad after he was diagnosed with a rare T-cell lymphoma at the age of 44; I was 42. While at first his needs for support were not high, he went on to have a difficult course of treatment, including a stem cell transplant with significant complications. He lost his vision, became immunocompromised and debilitated, and for a time lost the ability to eat. When he came home after more than 4 months in the hospital, he required round-the-clock care, and like many family caregivers I was shocked at how much of his care—including skilled medical tasks like administering IV antibiotics—fell to me. Since then, his care needs have eased, but he remains chronically ill and sometimes in need of support.
What inspired you to write your book Already Toast: Caregiving and Burnout in America?
When I was in the midst of caregiving, I started to wonder why, exactly, it felt so hard and all-consuming, and I wanted to find out more about the systemic forces and cultural narratives that push so much unpaid labor onto family caregivers—especially (and disproportionately) women. I was angry and frustrated about the degree to which caregiving took over my life, and I knew that was happening to millions of others like me. At the same time, I wasn’t finding many stories out there that I felt represented my experience—particularly some of the harder parts of caregiving. I believed there was a bigger story to be told about how we got to this place, and how we can make caregiving more sustainable for the 53 million family caregivers in America today.
At the beginning of the book, you state that “If cancer is often described as a battle…I feel like my life was collateral damage”. What about our current system of care makes it so that the family caregiver becomes collateral?
There’s an assumption, often, on the part of the health care system that all patients have a caregiver standing by, able and willing to provide very significant levels of care—and, not coincidentally, that assumption allows the system to cut costs by discharging fragile patients and requiring high levels of home care, but often that home care is not supported beyond a brief training. Our health care system is amazing at saving lives and going into full battle mode to do it—but sometimes less amazing at recognizing the full social and familial context in which those lives are lived, and in that case, the caregivers’ lives and needs are set aside or simply never considered.
How does caregiving set one apart from others? What attitude and relationship shifts happen? How does caregiving make it harder to relate to other people?
I experienced significant feelings of isolation as a caregiver, and that’s fairly common, I think. I had a hard time in social situations; I didn’t have a lot of fun chitchat to offer, my concerns felt so different from those of my friends, and I was often too busy or tired to socialize in the first place. To me, it felt like the isolation of grief, in which other people often don’t know what to say and may blunder—and I was in a heightened emotional state of feeling raw and sensitive. Of course, it depends on the situation, and I did find that many, many friends rallied around and offered wonderful support for which I was deeply grateful, and that’s the case for many other caregivers. But sometimes that gulf can grow, and it can be hard to repair.
How do caregivers settle on a good way to communicate with and update family and friends without adding undue stress on themselves? How much should the care receiver be involved in that communication?
That’s really up to the individual or family and their circumstances, but for me, individual communications really added to my time burden. I just couldn’t manage updating everyone who cared about Brad’s treatment by text or email—though an email list could be a good mechanism. We started a blog and posted updates, often with links on Facebook, so people could opt in to being more informed. CaringBridge or other similar sites can be good tools as well. At first, Brad was writing posts himself and we were trading off, but he got sicker (and frankly more heavily medicated) and couldn’t do it anymore. I did, however, try to check in with him about what he was comfortable sharing.
You claim that, “Part of the onus of caregiving is carrying the memory”. How does bearing witness to a care receiver’s decline become traumatic for the caregiver, especially when the care receiver cannot remember (whether it is due to a diagnosis like Alzheimer’s or the consequence of stress/shock)?
It’s really hard to watch a loved one suffer and decline, and it can definitely be a form of trauma. I wrote in the book about how a nurse told me that Brad wouldn’t really remember some of the worst parts of his hospitalization, and it’s true; his memories are hazy. But there are certain things that are seared in my memory and it’s still painful to think of them, like the time his eyes had to be sewn shut and I sat and held his hand by the bedside. Fortunately, he was appropriately medicated for that procedure, but it was still rough on both of us. I think therapy, including trauma-informed approaches in some cases, can really help caregivers process such challenging situations, whether it’s the shock of a crisis or the grinding weight of witnessing a long decline.
How is grief at the root of caregiving?
Interestingly, in researching my book I learned that the root of the word “care” itself derives from old words for wailing or lamentation—so grief is baked right into the concept! Caregiving involves so many losses—loss of the old life and old relationship to the loved one for whom you’re caring, and all too often, the grief of permanent loss if and when the care recipient passes away. Caregiving is inevitably a fraught situation, but with good supports—especially mental health support—we can manage the grief and challenging emotions around it.
How was leveraging online communities (especially via Twitter) also helpful for you to manage isolation?
I think there’s so much promise in online communities for easing isolation, especially as we’ve all seen in the wake of the pandemic. For so many caregivers, in-person meetups for support groups or socializing can be difficult or impossible due to time constraints and other challenges. It definitely was for me, and online I found people who were in caregiving situations really similar to mine and could connect with them. It helped so much in feeling
What do you do for self-care?
Exercise, therapy, massage, and getting enough sleep are my biggest ones!
Anything else you would like to share with caregivers?
Don’t be afraid to ask for the help you really need, whether that’s a Target run for laundry detergent or respite care, and to set boundaries to protect your own mental and physical health. It can be so hard to let go of guilt and stress, but if too many responsibilities pile up, that can lead to resentment and burnout—which aren’t your fault, but if you can head them off, so much the better.
Where can readers learn more about you and your book?
The book is available online (check out Bookshop.org or Amazon) and in local bookstores, and I have resources and more information about me available on my website, www.kawashington.com. Follow me on Twitter or Instagram @washingtonkate
Thank you for sharing your story, Kate! We encourage you to watch Caregiver Accounts: A Conversation with Kate Washington to hear more about her experience and the overall state of caregiving in America. If you or someone you know needs support with their caregiving experience, connect with the CRC that serves your County.Share this post: