This article appears in the June 2023 issue of The American Prospect magazine. Subscribe here.
Who Cares: The Hidden Crisis of Caregiving, and How We Solve It
By Emily Kenway
Hachette
When my grandfather became terminally ill, my parents chose to hire a home health aide for him rather than putting him in a nursing home. A medical bed was installed in his room—by that point, he was living with my parents—and the aide was deputized to wash him, feed him, change his clothes, and help with other activities of daily living. On days when classes ended early, I would spend part of my time sitting in the living room, pretending to read, but really listening for the slightest sound that signaled the care worker needed an extra pair of hands. One time, my grandfather slipped while trying to get out of bed and I found him propped against the legs of a chair. In a semi-lucid state, he had trouble telling me, in either his native Chinese or in English, what he had been trying to do; all that escaped him was a soughing sound that seemed to plead with me not to be too angry with him. After examining him for wounds (luckily, he hadn’t hurt himself too badly), the caretaker and I managed to lift him back onto his bed.
I recount my experience not because it is unique, but because it is common: You probably have a similar story about caring for a family member or seeking surrogates who do. Despite its ubiquity, elder care often gets elided in public debates about care work, which lately seem to begin and end with the question of how to raise kids. A new book by Emily Kenway, Who Cares: The Hidden Crisis of Caregiving, and How We Solve It, renders starkly visible the often invisible work of caregiving—one of the fastest-growing segments of the American workforce—and the toll such work exacts on its providers. With its impressive synthesis of research, textured analysis of care work in different countries, and its attention to the ethical issues inherent in elder care, it deserves a space on the shelf next to similar books on elder care like Ai-jen Poo’s The Age of Dignity: Preparing for the Elder Boom in a Changing America, which proposed a “Care Grid” (a network comprising family members and professional caregivers reinforced by federal and state policy) to take care of our nation’s rapidly aging population, and Lynne Tillman’s Mothercare: On Obligation, Love, Death, and Ambivalence, which chronicled the author’s experience of caring for her elderly mother. (That the authors mentioned are all women is no accident: As Kenway notes in her book, caregivers across the world are overwhelmingly women, who have historically been viewed as innately suited to care work and associated forms of emotional labor.)
Kenway’s book opens with a description of caring for her ailing mother. Toward the end of her life, her mother, weakened by cancer, required the assistance of another person to get out of bed, wash herself, make meals, and do other tasks. “Care seems to override physics, unhitching our days from the outside world,” Kenway writes. In this new world, “time moves spasmodically, lurching between hours that drag like slow fog and moments that come fast as lightning splitting a tree.” Each morning is “a game of roulette” and as the years accumulate, they gradually take their toll on Kenway. She goes from working full-time to part-time, until she eventually resigns from her job at a nonprofit. She writes with bracing honesty about her own mental health struggles during this interval; socially isolated for long stretches of time, she became depressed, increasingly anxious, guilt-ridden, and suicidal. “Grief has no interest in being project managed,” she grimly observes in one period of mourning after her mother has died.
Family caregivers report spending, on average, 26 percent of their income on caregiving activities.
If her book had only been about her personal experience as a kin caregiver—anticipating her mother’s every need while putting her own life on hold—it would have made for worthwhile reading. But Kenway also reports on the experience of individuals living in other countries who have undergone similarly challenging experiences as caregivers.
Ayesha in Kathmandu, Nepal, abandoned her degree at university to help care for her sick father. She had intended to return to her studies after her father recovered or died, but when her mother was diagnosed with cancer, all her plans for her future changed. She had a “complete meltdown,” broke up with her partner, became severely depressed, and suffered a brain aneurysm. Seventy-something Ulla, caring for her husband in Kävlinge, Sweden, after he suffered a stroke, preferred to see herself as her husband’s “possibility maker” rather than his caregiver, but her days were just as arduous. A third woman, Katy, went from being a full-time teacher to part-time work to help care for her terminally ill father, and later resigned from her job when her husband was diagnosed with motor neuron disease. Katy, Ulla, Ayesha, and Kenway all experienced “role engulfment,” the sense of their identities being completely subsumed under their roles as caregivers. Their stories further testify to the fact that the family “as a load-bearing wall … can’t support the weight of care.”
As has been pointed out ad nauseam, the COVID pandemic accentuated the crisis of care, revealing asymmetries in both who is able to receive high-quality care and who must work to provide that care. In some communities, as Kenway documents, the pandemic also fostered a greater awareness of our interdependence and gave rise to mutual aid groups and gift economies. The promise of such aid networks lies in the fact that members are seen as “both capable and needy,” to borrow an idea from the philosopher Martha Nussbaum. In collapsing categories like “dependent” and “independent,” such groups promote a sense of “generalized reciprocity,” which, as Kenway explains, obtains when people give to each other without immediately expecting something in return. In one section, she draws inspiration from a great-aunt, an Ursuline nun who lived her last years in a community of individuals who took care of one another. “She found a happy hybrid of independence and community, embedded in a broad and reliable network of care—a kind of family by choice,” writes Kenway. Elsewhere, she describes co-housing arrangements in countries like France, where a group of older women established La Maison des Babayagas (or “house of witches”). Such arrangements are distinguished from care facilities or retirement villages in that care is ministered by fellow residents rather than by paid caregivers.
WIKIMEDIA COMMONS
La Maison des Babayagas, a co-housing arrangement for elderly people in France
These models are all instantiations of what Kenway calls “kinning,” or “the ongoing creation of family beyond conventional bounds.” Given our demographic reality—in the U.S., “the number of people needing care is expected to outstrip Family members available to provide it by 71 percent by 2050”—her proposal to expand the notion of family (a word she capitalizes throughout the book, to signal the way it has been fetishized) seems reasonable. In this respect, her work resonates with that of writers and thinkers like Shulamith Firestone and Sophie Lewis, who have called for family abolition as a way of expanding systems of care beyond the nuclear family. Though Kenway declines to go into greater detail about what a “commons of care” would look like (partly because each commons would be shaped according to the needs of the people comprising it), it would, in essence, involve people “put[ting] energy into stitching our collective care net [so that] we each get to fall into it and be held by it when needed.”
Besides the psychic toll of caregiving, there is the economic impact: Most caregiving continues to be performed by family and friends, and family caregivers report spending, on average, 26 percent of their income on caregiving activities. According to one recent study from the American Society on Aging, family caregivers in the U.S. devote an average of nearly 36 hours per week to care work. For many, this is in addition to working full-time jobs. Kenway predicts that “eldercare will be the new childcare” and the data bear this out: The U.S. is on track to see more older adults than children by 2034 and, according to U.S. census data, single-person households rose from 13 percent of all households in 1960 to 29 percent of all households in 2022. Similarly, the U.K., where Kenway resides, has seen an 8.3 percent rise in people living alone in just the past decade, according to the Office for National Statistics. “The parent-child relationship was the focus and remains the paradigmatic care relationship today; all others are understood with reference to it,” Kenway writes. Yet, as she makes clear, it’s a mistake to narrow the aperture when we talk about care; both types of care have been devalued, even as they form the bedrock of our society and economy. As Kenway briefly mentions, underpaid care work in the U.S. is also tinged with the legacy of slavery; enslaved African women were some of the nation’s earliest care workers.
The U.S. does not have a sterling record of caring for its care workers and certainly has a long way to go to enacting anything like the vision of commoning and kinning that Kenway calls for. The Family and Medical Leave Act, passed 30 years ago, guarantees workers only the right to unpaid time off and is restrictive in the extreme: It only applies to workers who have worked for their employers for a year and “at a physical workplace where at least fifty employees work within seventy-five miles of that location.” In a recent review, the U.S. Department of Labor found that 41 percent of private-sector workers were ineligible for unpaid family leave since they did not work at companies with a minimum of 50 employees, as required by the FMLA. More recently, as Robert Kuttner has pointed out in the Prospect, when President Biden’s Build Back Better plan was rebranded as the Inflation Reduction Act in 2022, “what remained on the cutting-room floor was over a trillion dollars of outlays to expand support for the entire range of caregiving.” It’s not as if there isn’t any money to shore up caregiving services; money could be reallocated from the increasingly expensive and wasteful Pentagon budget, which reached $858 billion this year, to programs that cater to human needs and help save millions of lives instead of breeding mass annihilation.
Solving the care crisis will ultimately require more than just paying caregivers a livable wage, innovating our way out by creating “care tech” toys, and making sure that nursing homes are up to code. On a conceptual level, it will require us to “dethron[e] the falsehood of the free individual and replac[e] it with a conception of the self that’s embedded in relationships,” Kenway writes. On a practical level, she calls for a shorter and more flexible workweek for all, which would allow provider-caregivers to spend more time with their loved ones without suffering the stigma that sometimes attaches to people who work fewer hours than their non-caregiver peers. (She marshals evidence of successful trials of four-day workweeks in the U.S., Spain, the U.K., Canada, Australia, and New Zealand.) Moreover, universal paid family medical leave would ensure that workers don’t feel pressured to sacrifice their livelihoods when they are called upon to provide care to a sick or disabled family member. These are all sensible solutions, but not as comprehensive as those articulated by Ai-jen Poo, president of the National Domestic Workers Alliance, in The Age of Dignity. (In that book, published eight years ago, Poo proposed strengthening labor protections for caregivers and offering a path to citizenship for immigrant care workers, among other things.) Yet when one might have wished for more concrete policy solutions than Kenway offers, she shows irrepressible signs of the amplitude of her moral imagination. The questions she asks deserve a full airing. What would it look like if we deprivatized care and made it a public good? What if we treated caregivers’ income as an entitlement rather than an allowance? What if we made buildings and other spaces more navigable for people with disabilities? What if we made it a universal human right to provide care? In this new reality, care work would shift “from being a women’s problem to being a human problem, from being a sector to being a species activity.”
