At 42, Kate Washington was a busy freelance writer whose younger daughter was just starting kindergarten — a shift she hoped would give her more time to focus on her career. But life had other plans. When her husband, Brad, was diagnosed with a rare T-cell lymphoma, she experienced what she jokingly refers to as a “very inconvenient midlife crisis.” The news from the oncologist plunged her into the world of caregiver, one with ups and downs, guilt, fear and vigilance that added to her already full life.
"My children were 9 and 5 when Brad was diagnosed,” says Washington during a phone interview. “I had just begun to feel like we'd made it out of the hard part of parenting and into the elementary years. Caring for someone else beyond my children was the furthest thing from my mind.”
In her recent book, Already Toast: Caregiving and Burnout in America, Washington chronicles how Brad's diagnosis upended any sense of security she had. She writes powerfully about the initial shock and how long it took for her to come to terms with the kind of intensive care he was going to need.
"There was so much uncertainty,” she says. “When is the moment when you flip from not being someone's caregiver to their caregiver? Is it when you start going to medical appointments, calling the insurance company or administering medication?”
The emotional roller coaster
In the book, which is part memoir and part study on the role unpaid caregivers play in a society without structural and financial support, Washington perfectly describes the emotions and activities that so many caregivers experience. She articulates some of the ugly, highly personal and often shameful emotions caregivers feel at times.
"You can question yourself a lot,” says Washington. “Am I unkind? Am I lacking in something? Why am I struggling with the demands of the situation? Working through those emotions without a model can be isolating and challenging.”
There is a poignant moment in the book when Washington contemplates just driving away from the house and not coming back, a fantasy with which I could relate having cared for my own husband after a life-threatening injury.
"There is a time when the mutuality of partnership has to fade away because the physical needs of the person in the moment must come first,” she says. “In a partnership or a relationship you end up giving, but normally you get back things in terms of sustaining or mutual ability to support one another. When your loved one is incapacitated and can no longer function the way they used to, you have lost your primary support at the exact time you are going through something really, really hard.”
A turning point
Washington can clearly identify the moment when “it all slipped.” Brad's diagnosis — a tumor in his lungs — suddenly took a turn for the worse. Her husband began to cough up blood at the dinner table and that terrifying drive to the hospital was her leap into the caregiver zone on a journey that was full of gray areas, never level or steady.
Washington's research into the state of caregiving in America is a well-documented look at not just where the gaps are, but also the invisibility of caregiving and the assumptions we make about caregivers. She makes a case for how much economic and social value the work has, despite the lack of societal support.
"When you go through something challenging, people have a tendency to shrink away,” she says. “But we can find strength in community through unexpected sources I wish were more formalized in America. We need to be doing more as a government and society to offer support, but informal networks can bring a lot of help and sustenance to people as well."
She notes that there is a tendency in our country to silo caregivers off into nuclear families. “Therefore, a lot of care takes place behind closed doors,” says Washington. “But if we turn some daylight on those often-private acts of care and begin to talk about them, it benefits everybody.”
An undue burden
Washington exposes the ways in which the health care system takes caregiving for granted, how a disproportionate weight of caregiving falls on women or minimum-wage earners, people of color or marginalized groups. She points out the great irony of how our society frames caregiving as both “priceless and worthless,” a phrase coined by author Evelyn Nakano Glenn in her book Forced to Care.
"People can burn out quickly without support and we need to change the patterns of society if we're going to build a compassionate and truly caring society,” she argues. “Rethinking caring labor in all forms and providing adequate compensation is a major issue, one that the coronavirus pandemic has brought to national attention with the number of women who have had to drop out of the workforce to care for children or elderly parents."
Parenting and caring during the isolation of the pandemic has bubbled up healthy discussions around caregiving that have helped people feel less alone. “The pandemic has shown us many things as a culture, but for me it has highlighted the importance of community ties and how much I miss these sustaining networks, from acquaintances at school drop-off to the people you see in the course of the day,” she says. Caregivers have, all along, experienced this kind of isolation, which gives us all a chance to rethink the way we enhance those community ties.
During the two long, intense years Washington spent as her husband's primary caregiver and now living with his chronic illness and disability, she has seen her role ebb and flow. When I ask her what she would share with the benefit of hindsight, she offers this advice.
Say, ‘Yes!’ "Appreciate and accept the help that is offered, such as rides for kids or meals. If I had to do it over again, I'd accept offers sooner and more gladly than I did.”
Don't delay seeking support. “I felt like I had to save offers of help for when it got hard, but I wish I'd been more honest with myself and proactive with others about how much support and help I needed early on."
Get a reality check. “I wish I'd been more mentally prepared for how long the span of acute caregiving would be and how draining and depleting the role would be."
Outsource what you can. “Lymphoma brought horrible night sweats and our sheets needed changing daily. I was fortunate to be able to pay for a laundry service."
Find a balance between privacy and openness. "When you do share, unexpected resources and assistance can come out of it. Sometimes after a workout at the community gym I would let down and cry, embarrassing as that was. One day, I shared our story with a woman I didn't know. It turned out she was in the oncology field, knew a specialist and set Brad up with an appointment. I didn't love leaving my tears all over the gym floor, but we believe changing oncologists saved Brad's life."