Kate Washington, author of Already Toast, gives us a look into what it’s like to be a caregiver in this Ask the Expert. Her new book explains the trials and learning moments that come when you take on this role. Read her answers below.
WAM: You were only 42 when you became a caregiver. What did you struggle with the most when you first became a caregiver to your husband?
Kate Washington: The challenge of making time for everything that needed to get done in a day was the most obvious initial difficulty when I first became a caregiver. I had young kids in school, and as it happened when my husband Brad was hospitalized in an emergency situation it was the end of the school year, with all the bustle of activities and end-of-year projects, and that was hard. But on a deeper level, I think what jolted me the most was the identity shift. I was used to thinking of myself as a freelance writer, a mother, and any number of other roles, but when I stepped into a doctor’s office or a hospital room, all those roles fell away and in the eyes of the establishment I was just there as the support person for my husband. Of course, I needed and wanted to support him, but finding that everything else about my life was suddenly a lower priority for me, or invisible to others, was a hard shift and one I often resented. In fact, I don’t think I ever quite adjusted to it, and as a consequence, it’s something I write about a lot in Already Toast.
WAM: You were a mother of 2, a wife to a man who’d suddenly become very sick, a house and home manager, not to mention a juggler of other people’s schedules and appointments. How did you fit yourself into that full-time routine?
Kate Washington: Juggling all those pressures was a hard balance because I both wanted help—which I was very fortunate to get from many sources, especially my in-laws—and wanted time to myself, with no demands on me. But, of course, accepting help comes along with coordinating with and depending on the sources of help, so it could be a double-edged sword, despite my great gratitude for the assistance. I guarded certain respites very carefully, and I would say that therapy and time to exercise topped that list. I was fortunate that my children were in elementary school, which meant six hours a day they were cared for, and I enrolled them in the school aftercare, even though they weren’t very happy to be there. The pressures of caregiving thrust a lot of our routines and activities into sharp relief, and I let go of a lot of optional things that we weren’t deeply committed to, like piano lessons for the kids. It turned out my younger daughter really did love piano and after a year or so asked to pick it back up, so in some ways dropping activities was an instructive lesson in what we cared about the most as a family and as individuals.
WAM: Your title is Already Toast and you play a lot with the concept of burnout. Define burnout—what it feels like when you are in the middle of it.
Kate Washington: Burnout is when someone is under heavy stress for so long that it affects their mental, physical, and emotional health. Its effects can be really profound and long-lasting, and it’s tremendously common among caregivers—especially those caring for loved ones with chronic or degenerative conditions, such as Alzheimer’s, because the ongoing demands on the caregiver are so high. For me, burnout felt like a state where I might snap at any time. I felt fragile, overextended, impatient, and exhausted even if I managed to get a good night’s sleep. I yelled at my kids more than I wanted to. I had a hard time finding daily joy or hope or accessing empathy.
WAM: You say that burnout makes you a worse caregiver and a worse person. In what way?
Kate Washington: I certainly can’t speak for everyone undergoing such a strain, but in my case burnout led to a kind of tunnel vision where I was so overextended I just had to plod forward with the task at hand, but I often couldn’t summon the love or compassionate to do it with empathy and deep kindness that lies at the heart of caregiving. Looking back, I also realize I was so frightened that I might lose my husband that I cut off some of my emotions and did certain kinds of caregiving almost robotically, and I think that related to burnout as well. I had less patience with the people I loved and less warmth to go around to friends and family, and honestly, I didn’t enjoy my own company either. I think all of those were a function of stress and burnout—and it’s a painful thing to experience, as well as probably no fun to be around for others!
WAM: What are the most important changes you’d like to see for others who find themselves, as you did, an unpaid caregiver with a full-time job?
Kate Washington: First, we need paid family leave, urgently. The U.S. is the only industrialized nation to lack this policy, and its importance for people taking care of family members is glaringly obvious. This gap is one of the reasons so many caregivers must stop work, causing untold financial stress and lifelong economic impacts. That leave really must also include gig workers and the self-employed (which included me at the time I became a caregiver), a growing sector of the economy. Second, caregivers need financial support. The Biden administration is proposing caregiver tax credits, which are a great start—but I would love to see direct payments or some form of universal income supports, as we’re starting to see for families with children. Studies show that caregivers on average spend $7000 out of pocket on their caregiving work, and that doesn’t count the enormous value of their uncompensated labor, so tax credits can only address a small part of the economic impact. Third, we need health care reform that integrates long-term care insurance and even more broadly accessible health insurance, to address gaps in coverage that stress families and make it impossible for many to get the care they deserve.
WAM: How have you and your family recovered, if you have? How do you reclaim your former life as a mother and wife?
Kate Washington: Thank you for asking! We are really fortunate that Brad is doing better. Though he continues to endure chronic illness and is disabled, he can manage much of his own care, but that’s been a slow process. It has taken a lot of time, honesty, and patience to knit our lives back together. At the same time, family life didn’t stop, and the fact that our kids, now 15 and 11, are growing up naturally meant that we had to keep adjusting our role as parents. Therapy—both individual and as a couple—was really important, and it ought to be far more widely accessible than it is. For me, writing Already Toast has been a way of processing, as well as, I hope, giving voice to an often unheard group.
WAM: What are a few things any one of us could do to help a caregiver we know?
Kate Washington: Bring them a meal in a disposable container, so the recipient doesn’t have to return any dishes. Send them a text or a note of support with no need to respond. And give them a break by offering to spend time with the care recipient so the caregiver can get a break. Small gestures can make the world of difference when you feel like you’re struggling without relief in sight.