In despair, I typed “caregiver” into Google, planning to follow it up with “resources” or “support group.” The first search the autofill suggested, however, was “caregiver burnout.” I sighed and clicked. That morning, I’d cried my way through a miserable appointment with my husband Brad’s oncologist. The news we’d received had been no grimmer than any other development over the preceding 18 months of his treatment for a rare T-cell lymphoma, which had included a debilitating stem cell transplant. But on that hot July day in 2016, I was so exhausted by the caring grind that I could no longer cope. To my embarrassment, I couldn’t stop weeping or even look up. I’d always tried to project competence with Brad’s physicians so they would take my questions seriously, but by 10 a.m. I was already worn out. I’d spent the morning packing lunches, running our kids to summer camp, loading a heavy wheelchair into the car, wheeling my frail husband across hot asphalt, and picking up a dozen new meds from the cancer center pharmacy, all on not enough sleep and with the knowledge that bills, laundry, and plenty else were waiting for me at home. My good-caregiver mask dropped. Tears fell on the coral-colored jersey dress I’d worn to try to present myself as capable rather than a frazzled disaster. As I broke down, the oncologist chided me for not taking good enough care of myself. If I didn’t, he said, how could I take care of my husband?
Fragile and overextended, I heard in that question an implication that the only point of me, as a human and not coincidentally as a woman, was to care for another person. What about my own life? Didn’t I deserve care in my own right? I left the office as silently as I’d sat in it, but fuming now instead of crying. The so-called self-care that the oncologist had prescribed felt like yet another task I resented, yet another obligation I had to fulfill. What I wanted was for somebody else to volunteer to care for me. Still, I dutifully went home and Googled, intending to look for resources. The top result for “caregiver burnout” was a quiz to determine whether the caregiver taking it was burned out. I took it. At the end I got the breezy result “You’re already toast!” illustrated with a stock photo of a burned piece of bread. The website recommended taking more time for myself, getting a massage or going on walks, arranging for care so I could have an hour to myself, or even an occasional night away. But it said nothing about what to do if I was already doing those things and was burned out anyway.
At first I wasn’t particularly bothered by the quiz’s cheerful assertion that I was already toast. Toast is the food of invalids, and the food of comfort. The food I turn to when I am sick, when I am sad, when someone I love is either of those things. Cut into strips, soaked in butter, unchallenging, warm, browned, delicious thanks to the Maillard reaction. Why is it also a negative word? Why “you’re toast”? Toasting usually makes things better; burning makes them worse. But this quiz result was clearly negative: You’re done. Crisped. Eaten. Chewed up. Swallowed. Sounded about right. I spent more than two years as Brad’s primary caregiver during the long, intense crisis phase of his illness; in the years since, as he’s endured disability and chronic illness, my responsibilities have ebbed and flowed depending on his health. During the long crisis, I was so overwhelmed, and eventually so burned out, that sometimes I fantasized about simply turning around while driving to the pharmacy or the grocery store, heading to the airport instead, and buying a ticket on any plane going somewhere semitropical.
I was 42 when Brad was diagnosed, and I joked to friends that I was having a very inconvenient midlife crisis, but under the dark humor lay a lot of truth. What stopped me from abandoning my life was the thought of the fallout: likely endangering my husband’s life, shocking our friends, and further traumatizing our already fragile children. Inducing lifelong guilt by becoming a person who left her husband at his lowest point. Alienating everyone I’ve ever loved, everyone who has ever loved me. I stayed. Brad is no longer desperately ill, but he was permanently disabled by the aftereffects of his treatment. We’ve worked hard, often painfully, to rebuild our marriage and our lives. It’s still a work in progress. In the long ordeal of his illness, his survival was the focus. If cancer is often described as a battle—a metaphor I dislike, since it’s hardly a fair fight—I feel like my life was collateral damage.
Our culture undervalues caring and exploits those who care for others—shunting these tasks disproportionately onto women, people of color, and other marginalized groups, often paying them no more than minimum wage for their efforts. And society often frames family caregiving as both “priceless and worthless,” as Evelyn Nakano Glenn puts it in her 2010 book Forced to Care: Coercion and Caregiving in America. In other words, sentimentalized narratives around caregiving may tell us the work we do is an invaluable gift that is its own reward, as in the very title of the recent book Priceless Caregiving: Stories of Elder Care Success, Courage, and Strength. Yet the work of most family caregivers receives little financial support and so lacks economic worth: Most family caregivers are never paid, and indeed most take a profound financial hit due to a lack of societal support or of adequate work leave for their role. In truth, however, the work we do has extraordinary economic and social value. Rethinking caring labor in all of its forms, and compensating that labor adequately, is a major issue for contemporary feminism and social justice—one that the coronavirus pandemic laid particularly bare.
The Constellation of Care
Tending to others is at the root of being human. As Arthur Kleinman notes in The Soul of Care: The Moral Education of a Husband and a Doctor—his lovely, nuanced portrait of tending to his wife—“care is centered in relationships.” So what’s the problem with caregiving? In cases of serious illness or ongoing disability, the work of a family caregiver can expand with alarming speed to become a full-time job that includes paperwork and fighting insurance battles, administering IV nutrition and changing colostomy bags, sorting medications and checking insulin. As a caregiver, I sometimes felt like I barely existed as an individual. One day I had to pick up a prescription for myself and when the pharmacist asked my date of birth, I unthinkingly gave my husband’s. I had become so used to providing his birthdate that when it was time to meet my own medical needs, I forgot the most basic fact about myself. It was a momentary slip but also a profound moment of erasure. The medication I was picking up was an antidepressant I’d started taking to cope with the anxiety and hopelessness I felt because of someone else’s illness.
The writer Anne Boyer, in her lyrical memoir of her breast cancer ordeal, The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care, notes how we are intertwined through illness and calls caregiving a kind of suffering in itself: “No patient is sovereign, and every sufferer, both those marked by cancer treatment and those marked by the exhausting routine of caring for those with cancer, is also marked by our historical particulars, constellated in a set of social and economic relations.” The constellation of care, illness, and our contingent lives brings us all into webs of care. A disservice to caregivers is equally a disservice to those receiving care. Caregivers are already a huge group. Although hard numbers are difficult to pin down, due to variations in definitions of caregiving, the Family Caregiver Alliance and the American Association of Retired Persons (AARP) estimate that more than 50 million Americans serve as unpaid family caregivers. Additionally, a large “care gap” looms in our future because of the aging of the baby boomers—the oldest members of the generation turn 75 in 2021. With birth years 1946–1964, this cohort comprises some 76 million Americans, and its bulk is shifting the overall age composition of the United States to skew much older—and more in need of attendance. In our era of sharply declining fertility rates and weaker social ties, that demographic change will leave many people stranded without necessary care.
This coming care gap has pushed caregiving, once all but invisible, into the spotlight as a policy and cultural issue. I was struck recently by a piece in the New York Times in which pediatrician Aaron Carroll, who has a regular column, wrote about his experience caring for an ill friend and concluded, “caregivers aren’t supported, and America overlooks their importance.” Even for people in the medical field, it’s hard to notice the importance of caregivers until you either need one or become one. AARP has made research and advocacy around caregiving a major focus, ramping up its caregiver support, advocacy, and outreach. An extensive section of the AARP website addressing family caregiving includes legal and medical resources, a caregiver community, tips on life balance, and more. And in a report, the organization calculated the market value of unpaid caregiving work in 2015, aggregating hours worked and calculating the average wage of in-home caregivers or attendants. The resulting figure was a staggering $470 billion. Because of how the American healthcare system and insurance coverages operate, there’s an enormous gap between “too well for the hospital” and “too sick for home.” In this gap, in-home care is not covered and the only remaining option is for family members to take over care. For the lucky patients, such as my husband, who have good insurance, skilled nursing visits in the home may be covered a few times a week, but that’s it. In such situations, family members often sacrifice their work, their personal time, and even their own money for caretaking.
The Angel In the House
It wasn’t just a question of giving care to Brad, though; his illness also meant I took on the entire responsibility of caring for our children, our home, and all the other details of our lives. My mental load as a household manager and my emotional labor as a wife and mother were both heavy during Brad’s treatment. In the overwhelming whirlwind of crisis-level illness, I simply did what needed to be done, took help from family and friends despite my tendency toward independence, and paid for what I couldn’t manage any other way. An uncomfortable stew of resentment, guilt, and duty simmered beneath the surface every day. I was among the most privileged of caregivers: I was well off and financially stable thanks to an inheritance from my mother, so Brad’s health crisis was not also a financial crisis for us. Brad’s job as a unionized university professor, employed by the state of California, meant we had good health insurance, as well as generous leave and other benefits. I was and am a freelance writer, so my work was flexible. We also lived very close to Brad’s treatment center and had family help from his parents. Friends stepped up to help keep our daughters on an even keel.
Already Toast: Caregiving and Burnout in America by Kate Washington (Photo credit: Beacon Press)
My education, social privilege, and even facility in English allowed me to navigate the baffling bureaucracy, understand medical terms and research Brad’s condition, wrestle with paperwork, and advocate with doctors. I could even carve out time and money for those massages the caregiving quiz recommended, and I knew I was lucky that all of this was the case. Yet, even though I had just about all possible advantages and privileges going in, full-time caregiving was all-consuming. It led to extreme stress and burnout, affecting my mental and physical health, relationships, and quality of life. For less privileged caregivers—those with such stressors as financial strain, barriers to good care, and lack of social support—the challenges become exponential and often crushing. That’s bad for caregivers and patients alike—and is an issue of social justice and equity. Those pressures are most acute for women, who make up some 75 percent of family caregivers. My experience brought me to a deeper understanding of how unthinkingly our patriarchal culture demands women sacrifice themselves in almost any caring role—and how little it cares about what that does to us.
Anne Boyer neatly snapshots the deep, often unconscious layers of care associated with women: “In the waiting rooms, the labor of care meets the labor of data. Wives fill out their husbands’ forms. Mothers fill out their children’s. Sick women fill out their own.” Arthur Kleinman, who focuses on his own growth as a caregiver in his memoir, bluntly points out: “Often, in our society, boys are raised to be careless, girls to be careful.” But, he goes on, “while the social pressure and cultural expectations of women to be carers is much greater, it doesn’t mean care is natural or easier for them.” The cultural role of caregiving is in many ways an extension of the everyday forms of gender imbalance that exist in heterosexual relationships. Authors and twin sisters Emily Nagoski and Amelia Nagoski, in their book Burnout: The Secret to Unlocking the Stress Cycle, borrow the concept of “human giver syndrome” from philosopher Kate Manne’s book Down Girl: The Logic of Misogyny to describe this phenomenon. Manne posits a dual class system, one in which “human beings” have a “moral obligation to be or express their humanity, while human givers have a moral obligation to give their humanity to the human beings”—that is, to “‘offer their time, attention, affection, and bodies willingly, placidly, to the other class of people.’”
As the Nagoskis put it, “Givers are expected to abdicate any resource or power they may happen to acquire—their jobs, their love, their bodies. Human givers must, at all times, be pretty, happy, calm, generous, and attentive to the needs of others, which means they must never be ugly, angry, upset, ambitious, or attentive to their own needs. If we had set out to design a system to induce burnout in half the population, we could not have constructed anything more efficient.” This gender breakdown into “beings” and “givers” is, as Manne herself acknowledges, “far from exhaustive”—and one that leaves out the vast diversity of human experience and relationships. This model, however, does offer some illumination of a cultural preconception that operates, I think, unconsciously for many people—and a dynamic I personally experienced: the expectation that caregivers give freely of their entire selves, and more so when we are women. Once I started noticing caregiving in my own life, it popped up everywhere. Heartbreaking caregiving narratives were there in the novels I’d long loved, such as Jane Eyre.
Rethinking caring labor in all of its forms, and compensating that labor adequately, is a major issue for contemporary feminism and social justice—one that the coronavirus pandemic laid particularly bare.
Brad and I had met when we were both in graduate school, studying English literature. I worked on Victorian novels; he, on modernism. In the many thick novels I read, I never noticed how many characters were caregivers, dispensing broth to Victorian invalids. But they were there, as they were bound to be in an era when most people died at home. As I entered more deeply into the world of being a so-called cancer spouse, I thought back to them. They were often depicted as little more than shadowy figures in the corner of a darkened sickroom. In fact, one highly gendered model for representation of caregiving dates to this period and trades on a major gender archetype of the era: the Angel in the House, silently bringing soup on a beautifully arranged tray to a delicate invalid and offering full, self-sacrificing support at all times. The literary caregivers that interested me, though, were more complex. Some were angry, as I have often been angry. Some were neglectful, as I have been tempted to be neglectful. Some were drudges, chained to their charges; others rejected their charges’ demands. Some were almost erased, invisible in the narrative, much as I have often felt erased by the demands of being a caregiver.
The parables of caregiving offered by these Victorian and later narratives remain surprisingly relevant, offering insights into the impossibility of the demands still placed on women. It’s no accident all these characters were women, despite the obvious existence of male caregivers—the expectation that women will be good at caregiving, due to natural inclination, runs deep. Caregiving strain negatively affects both patients and overstretched families. Its economic and other emotional effects can reverberate for years or decades. Putting the pieces back together after caregiving is a challenge that’s often overlooked, as caregivers—no less than those for whom they care—can suffer from a form of post-traumatic stress. Everyone should be concerned about how the coming shortfall in caring will affect them, their parents or grandparents, or their children. Nearly everyone has seen the fallout of the crisis in caregiving: the plight of an elderly neighbor or relative who lives far from children or grandchildren, the friend who must declare bankruptcy after catastrophic medical treatment, even waiting lists for expensive daycare slots for kids all illustrate how thoroughly our society has ignored those who need care.
In some ways, the crisis in caregiving for the ill or disabled is an unintended consequence of the success of medical treatment, which has extended the lives of people who in generations past might have died. Brad barely survived a relatively new treatment for aggressive lymphoma; fifty years ago the disease might have killed him before it was ever diagnosed. He deserves better support than what I, his harried wife, could provide alone, and like all caregivers I deserve a life of my own. For me, care work hardly felt like a vocation, with implications of spiritual purpose and a deep internal longing. Instead, it evoked feelings of obligation. I suspect that’s a feeling that many women can identify with, whether because they’ve been married, a daughter to demanding parents, or a mother. I also worried that I was revealing a deep selfishness because I wasn’t intrinsically drawn to the work. Caregiving led me to a much clearer understanding of gender politics and invisible labor not just in my marriage but in my own mind. My new role led to a stark realization of just how much invisible labor—a hot topic in the gender debates in recent years—I had taken on over the course of our marriage. To my surprise, my workload around the house, particularly in matters that touched on organization and the needs of our daughters, did not come close to doubling when I lost my husband’s contributions.
Photo credit: Photo by Kat J/Unsplash
As Brad’s health improved, we faced the daunting task of shifting the balance back. I had to try to explain to him the mental load I’m always carrying. It’s required a lot of deliberate communication and commitment to reset our old patterns—sometimes successfully, sometimes not. Arguments about caregiving bump up continually against an impasse. Sick, chronically ill, and disabled people have a right to the care they need to live. Their lives have unquestionable value. The lives and work of we who care for them have value, too. But the urgent needs of our charges win out over our own wishes, which can always be deferred to another day, another time. The result is an invisible army of us pressed unwittingly into a kind of service many of us couldn’t fully imagine before it crashed into our lives like a sour incarnation of the Kool-Aid Man. I had watched and even helped my mom coordinate end-of-life care for my grandfather, who had Parkinson’s disease and resisted the help he needed; even so, I couldn’t grasp the all-consuming nature of caregiving until I was in it myself.
For caregivers, the crisis doesn’t stop when the immediate threat to life for the ill person ends. In this book’s conclusion, I offer a look at ways we could mitigate that damage, but we are a long way from being a truly caring society. The acute emergency of severe, life-threatening illness such as cancer—powerful, expansive, devastating, all-consuming, adrenaline-fueled—is the hurricane. Caregiving is cleaning up after the news crews have left, scrubbing the hidden black mold years later, becoming ill from the contaminated floodwaters. Over the years of Brad’s illness, I squeezed in all of the recommended self-care I could—exercise, therapy, occasional time away—but it wasn’t enough to stem the ongoing emotional, physical, and logistical demands of the situation. By a couple of years in, I was collateral damage. I was already toast.
Excerpted from Already Toast: Caregiving and Burnout in America by Kate Washington. Copyright 2021. Excerpted with permission by Beacon Press
