Read an excerpt from Already Toast below.
Chapter 5 – To A Crisp
I knew I was burned out well before I took that quiz that told me I was already toast, but seeing it on the computer screen drove the point home. During that summer after Brad came home from the hospital the signs were unmistakable: I was irritable all the time, ready to snap at the slightest provocation. I was impatient with my slow-moving, ill husband and I wasn’t nice to him about it, either. I felt hemmed in on every side, thwarted at every turn, and although I kept the household running and all the metaphorical balls in the air, I don’t think anyone enjoyed my company, least of all me.
Even though I was angry when my husband’s doctor told me, “If you don’t take care of yourself, you can’t take care of him,” there was a lot of truth in it, as there is in the saying about putting on your own oxygen mask ﬁrst. What I couldn’t articulate to him, or even to myself in the middle of my rage-crying storm, was that I needed help and care and real relief regardless of whether it made me a better caregiver; I needed it because I was a person.
Burnout kills empathy and makes worse caregivers of all of us who suffer from it. More than that, it made me a worse person: less kind, less patient, less fun to be around. Being so depleted made me miserable and being miserable made me, frankly, a bitch. The trouble is that if you’re burned out you can’t take care of yourself very effectively, either. I was coping as best I could: going to the gym, trying to get enough sleep, maintaining a few supportive friendships—at least by text and online. But during the summer of 2016, often the only solution I found for my burn- out was to leave home at every opportunity.
It wasn’t easy to get away from home, despite all the help I had marshalled for Brad. There were our daughters to consider as well. (I discuss the challenges of so-called sandwiched caregiving in more depth in chapter 7.) The end of the school year is always a time with lots of demands on parents: open houses, performances, early dismissals, fundraising events, last-minute projects. I remember having to hastily borrow a little red wagon from neighbors and then panic-order a plastic lobster on Amazon for Nora’s mini ﬂoat representing Massachusetts in the ﬁfth grade parade of the states.
By the time school got out in mid-June I had more than hit my limit. I was really, really looking forward to the week of sleepaway camp I’d signed the girls up for—Camp Kesem. One of the girls’ therapists had told me about the camp, which is speciﬁcally for kids ages six to seventeen who are affected by a parent’s cancer. Our daughter Lucy, then six, turned out to be the youngest girl in at her session of the camp by two years and I was a little nervous about sending her so young, but I couldn’t wait for the break. Five whole nights without the girls sounded like bliss. Brad wanted us to spend more time together but I wanted to get the hell away from everyone. Nancy and Emali had been with us for more than a month by then and were able to handle all of Brad’s routines, and they were ﬁne with me leaving for a bit. I booked a couple of nights at a spalike resort in Calistoga, all by myself, to unwind. It was as good as it sounded. I read, swam, and rested, and then I returned home with dread.
As soon as I set foot back in the house I was swamped again with the feelings of overwhelm. Everywhere were reminders of how completely illness dominated our lives, from the medications cluttering our dining room to the white cane leaning by the door. Brad was starting slowly to recover a bit of independence and thanks to the cane he could go out for walks (which always worried me even as I was glad to see him pushing himself in his recovery). His social calendar was starting to be busier than mine; his old friends and colleagues rallied to visit him, adding more people to our already overcrowded house. One poet friend of his came to our house faithfully, always bringing poetry to read aloud sonorously, wear- ing jangly jewelry and a hefty dose of musky perfume; I started making excuses to ﬂee the scene when she was there. More and more, however, Brad was getting adept at taking walks and he occasionally met friends at nearby coffee shops. He returned home from his excursions exhausted but satisﬁed, and I was the opposite: I returned home from my short trips well rested but unhappy to be back.
Sometimes leaving home backﬁred on me, as it did over Fourth of July weekend. Our holiday tradition had been to go to our shared family cabin in the mountains above my hometown. Old family friends with their own cabin nearby hosted an annual party that we usually went to; the year before, I had taken the girls but Brad had stayed home, recovering from chemo. In 2016 he was even less able to travel but I took the girls for what I hoped would be a respite in the mountains. I hadn’t reckoned on how overwhelming it would be to be amid a big family gathering. The cabin was more packed than usual that year; several members of my sister-in-law’s large family came for the ﬁrst time and friends of my brother’s drove up for the day. The small cabin was stretched past its capacity, without enough beds for everyone, and the kids kept each other awake late into the night. I felt brittle and ambushed. Everyone asked about Brad, so I had to repeat the complex, ambiguous story of how he was doing over and over while friends said it was great he was doing so well. Nobody ever seemed to grasp just how fragile he was, nor how tenuously I was coping. That getaway ended up feeling far more stressful than staying at home would have been.
The biggest trip of that summer—the hardest won and most intricately planned—was, like the cabin visit, partly for the girls’ sake and partly for my own. That was the year Hamilton hit it big. The preceding October, before I had any inkling of how the stem cell transplant would go, three friends and I had bought the earliest available tickets to the Broadway show—which proved to be in August, ten months later. The four of us made a plan to meet in New York for the show no matter what. I’m not normally a Broadway fan but something about the intense fad for Hamilton that year swept me up in it, perhaps in part as escapism: I followed Lin-Manuel Miranda on Twitter, watched the stage-door videos the cast made, hoped I could keep the promise to meet my friends to see it, hoped we’d get to see the original cast. In the spring I set to make it happen.
I knew that the girls badly wanted to visit Brad’s parents in western Quebec that summer—my in-laws have a cottage on a small lake there and the girls loved their yearly kayaking, hiking in the woods, and swimming with Nana and Grampa. We had missed going the year before when Brad was in chemo. With my in-laws’ considerable help we wrapped both the New York and Canada trips into one eastward swing. Joe took over my caregiving duties with Brad in California while the girls and I ﬂew ﬁrst to Ottawa (the closest airport to the lake) and stayed a few days with Susan. I then ﬂew to New York by myself, met up with my friends and saw the show, and then ﬂew to Toronto, where I met Susan and the girls and we visited Brad’s brother and his family.
It was an ambitious, tiring trip, and looking back I can’t quite fathom how I had the wherewithal to put it together, but that time with friends— just for fun and just for me—gave an immense lift to my mental state in that intense summer. The trip also gave me something crucial during the stressful spring months in which Brad transitioned from hospital and to home: something to look forward to. Recovering from a state of burnout isn’t easy, and even now, years later, I ﬁnd myself still affected by that period of extreme depletion of my care resources. (I write more about those longer-term effects of caregiving in chapters 8 and 9.) But my instincts to ﬂee the situation, which I often felt bad about in those days, were self-preserving.
Excerpted from Already Toast: Caregiving and Burnout in America by Kate Washington. Copyright 2021. Excerpted by permission from Beacon Press.