Home Sick

In the National Galleries of Scotland in Edinburgh, there’s a drawing by nineteenth-century artist Patrick Syme showing a human skull leaning against books on a table. The Latin title, Memento Mori, means “Remember you must die.” Author, activist, and sociologist Emily Kenway is pursuing her PhD in social policy less than a mile from those galleries, at the University of Edinburgh, and her book Who Cares: The Hidden Crisis of Caregiving, and How We Solve It offers a similar wake-up call about human frailty. “We are only ever temporarily well, temporarily able, and temporarily young,” she writes. “Accident, illness, and old age will be part of our lives at some point, in our own bodies and in [the bodies of] those we love. It follows, then, that we should also expect to be caregivers.”

Kenway’s book describes a dysfunctional system in which tens of millions of people in the US are taking care of ill, disabled, and dying family members with little economic or emotional support. Kenway, who herself took care of her mother during that parent’s losing struggle with a rare and aggressive cancer, predicts the situation will get even more dire in the coming decades. Thanks to modern medicine, people can live longer with debilitating conditions like dementia and Parkinson’s disease, and as the overall birth rate drops, the population of the US and most other industrialized countries continues to “gray.” In the US only a fraction of elderly people in need of medical care live in residential retirement or assisted-living facilities or have paid care workers helping them. Far more are doing the best they can at home, tended by spouses, children, relatives, and friends.

Now in her late thirties, Kenway was born and raised in South East London. She earned a master of science in social and political theory from Birkbeck, University of London, and has another master’s from the Royal College of Music. Her first book, The Truth about Modern Slavery, was an examination of human rights and immigration policies, and she advised her country’s first Independent Anti-Slavery Commissioner. Who Cares was short-listed for the UK’s Orwell Prize for Political Writing. She’s been published in The Washington Post, The Guardian, and The Times Literary Supplement, and has appeared on Amanpour & Company. In pursuit of her doctorate she is currently investigating human trafficking among homeless populations. (emilykenway.com)

Kenway and I talked over video chat. She was forthcoming about the difficulty of caring for her terminally ill mother, and energetic and thoughtful as she explained how economic, political, and cultural factors intersect, often in a toxic way, with the medical system. Not content just to outline problems, she also offered some possible solutions.

 

Leviton: Reading Who Cares, I realized I had a very distorted view of caregiving. The sheer magnitude of the numbers took me aback. According to the International Alliance of Carer Organizations, there were more than 56.4 million unpaid home caregivers in the US in 2020. More than 20 percent of American families are affected.

Kenway: Yes, in the UK there are more than five million “informal” home caregivers. In a sense the numbers shouldn’t be a surprise to anyone. We all get old, if we’re fortunate, and we’re very likely to become ill or impaired and need help.

Leviton: It led me to recognize all the times I’d experienced or seen this myself, including helping friends take care of a bedridden parent, providing care to my daughter when she had a life-threatening infection, and helping move my father into assisted living. Right now I have a friend who’s consumed with caring for her spouse, who has a terminal brain disease. But until I read your book, I would have thought the “hidden crisis of caregiving” didn’t have much to do with me.

Kenway: I am bringing attention to something many people would like to ignore. My intent isn’t to pathologize it—oh, look at this strange thing that shouldn’t be happening—but instead to point out that it is happening. In fact, it has to happen. It’s a fundamental fact of loving someone with a human body. The question is: How do we arrange society in a way that reflects this reality? Because right now we are living in a kind of fantasy, and our denial creates horrific impacts on people’s lives. For instance, in the US it’s estimated that—through lost paid-work hours, having to leave jobs, and extra expenses—home caregivers lose $522 billion a year. And that’s on top of the mental and physical health costs of caring for someone. Much of the financial cost is invisible, because it’s happening behind closed doors.

I think our denial is a psychological defense mechanism. We don’t want to think about the fact that our lives are very likely going to be disrupted in this way.

Leviton: During the COVID-19 pandemic there was a tremendous amount of attention paid to what was happening in nursing homes and the lack of essential health-care workers, but there were many more people being cared for at home with no paid help.

Kenway: Precisely. And also during the pandemic there was a lot of conversation about parents juggling childcare and work. This, of course, has been the situation of most family caregivers all along. A substantial proportion have to keep working while they provide care to their loved ones.

There’s tremendous pressure for us all to continue to work; the economic system doesn’t want anyone to step out of the workforce to care for loved ones. In the bizarre logic of capitalism, it’s better that we work ourselves into the ground at our acceptable jobs, trying to earn enough to pay the tremendous fees for other people to do the caregiving. And that’s if you’re relatively wealthy. The more deprived you are, the more you’ll be involved, and the less support you’ll have. So this is a social-justice issue, as well as a gender issue.

Leviton: I do want to talk about how gender comes into this, but first I’d like to discuss the tension you experienced between your professional life and caring for your mother.

Kenway: My experience was fairly typical. When my mum first got sick with cancer, I was working five days a week. Over the years of her being unwell, I went down to four days, then three days, and eventually I had to resign my job. I say “had to” both because my mother wouldn’t accept paid caregivers and because I wanted to be with her. At that point she was terminally ill, and I didn’t know how long she had left. Of course it was a struggle to deal with email and Monday-morning team meetings, knowing that each day could be her last.

The experience has never entirely left me. I still refuse some of the mundanities of the work world. In talking to caregivers around the world, I’ve found that’s very normal. Most of us who end up caring for a loved one, unless we’re already retired, are going to lose a career path or a considerable part of our earnings and pension savings, which really matters for a lot of women. The current system is creating the conditions for old-age poverty in middle age.

You can also lose a sense of external identity. The psychologists call it “role engulfment”: You are overwhelmed by this thing you’ve become. You didn’t ask to be a caregiver, and it’s incredibly hard and incredibly important, even when the world doesn’t see it that way. I think the reason caregivers stay in the workplace as long as they can, even though it burns them out, is because the workplace is a space where they are still themselves and not just an accessory to their loved one. At work they have conversations that aren’t about sickness.

Even for people who live in countries that have much better systems of care and provide paid leave and so forth, it’s still a struggle, and the ability to provide care is still contingent on the goodwill of bosses. It can be overruled if there’s a changeover at the top or a change of government policy.

Leviton: You write that even doing something as mundane as shopping for clothes or having a meal with a friend seemed wrong, because you weren’t fulfilling your role as caregiver.

Kenway: The guilt of doing something for yourself is astronomical. When I was juggling work and care, I constantly felt I was disappointing someone just to do the things I had to do. It’s effectively impossible to maintain physical and mental health in that situation. Unpaid caregivers suffer from higher rates of poverty, illnesses, stress, and even mortality than the general population. In one US study 80 percent of baby boomers caring for an aging parent said it had put a strain on their marriage, and of those who’d gotten divorced, 25 percent said it had played a “major role” in the breakup.

Leviton: As you point out, there’s a general resistance to thinking about disability or the reality that our loved ones, and we ourselves, are going to die, probably of some illness that will require great adjustments.

Kenway: Right. My sister’s husband is from rural Indonesia, and his experience of death has been very different from mine and hers. He’s encountered more death directly and been around people who are dying. This is partly a cultural failure in wealthy countries: We have sanitized death to such an extent, we are able to ignore it. We fear death so much because it’s unknown, even though it’s the one thing in life that’s certain.

When my mum was sick, I noticed people were very uncomfortable if I mentioned it even in the smallest way, like if I said I’d just come from her or had to leave to be with her. I wasn’t divulging details about her cancer or anything like that, yet I could see them instinctively recoil. Their bodies shifted away from me. That led me to delve into the social psychology of death. And experimental research shows we do physically avoid people we believe to be ill or disabled. Psychologists think this could be an evolutionary instinct to avoid disease and infection. But I think if we can confront it, we might be able to evolve past it.

Perhaps, as a partial remedy to this cultural failure, we can educate children about illness and death. It’s strange that we learn in school about the sedimentary layers of mountains and how to draw a particular curve but nothing about the realities of the body and respect for caregivers. Children have probably already encountered this. My niece saw my mum when she was very unwell, and she knows my mum died. So we wouldn’t be telling kids anything they aren’t already aware of.

Really this is about our fear of being vulnerable. We believe vulnerability is bad and we should all be independent beings who don’t need anyone. But we’re all needy. Even if you can walk, you still need an income. You still need the support of others.

We have sanitized death to such an extent, we are able to ignore it. We fear death so much because it’s unknown, even though it’s the one thing in life that’s certain.

Leviton: I was thinking about this when I visited the small town in Massachusetts where some of my relatives still live. I saw the three-story houses where generations of my family used to live together under the same roof in the 1920s and 1930s, with cousins and aunts and uncles just the other side of a fence or around the block. Some of my relatives were born at home and died in the same house many decades later, surrounded by multiple generations of family. But some of my great-aunts were moved into what used to be called “old-age homes,” too.

Kenway: We can talk about how society used to be, but it doesn’t let us off the hook for our personal choices today. Instead of waiting for change to be handed down from on high, we need to actively model how we want society to be. We need to ask how we can be supportive of others and also willing to ask for help ourselves without shame.

I write in my book about some of the people who are doing the difficult work of reimagining these systems, like Anil Patil, the founder of Carers Worldwide, and Hilary Cottam in the UK, who conceived of Circle, a cooperative, mutual-aid community. I profile Older Women’s Cohousing (OWCH) in North London, which is for women over fifty. It’s an arrangement where people have their own private dwellings but share spaces as well. They are explicitly not each other’s caregivers in the usual sense, but, in fact, they do loads of practical caring for each other. When I visited, someone had broken a limb, and the community had drawn up a rotation to help with shopping, laundry, and so forth. How much better is that than relying on a single family member who might have to move to be close by, reduce their work hours, and so on? Instead a tribe of twelve or sixteen other women are around to provide support. Sociologists call this “fictive kin” or “families of choice.” It doesn’t have to involve cohousing. We can take the same idea and apply it to neighborhoods.

As you mentioned, families today are smaller than they used to be. Our birth rates are dropping dramatically, and our populations are aging. The American demographer Donald Kausler has called it the “graying of America.” By 2030 there are projected to be sixty-nine million Americans under the age of eighteen and seventy-one million sixty-five and older. By 2040 the “oldest-old” population—those over eighty-five—will have more than doubled. With that many elderly people, we can’t sort out care in the way it was done in the 1930s. Women aren’t as available to provide free labor, because most families need two earners to get by. Adult children live much farther from their parents than before. We have this huge care need and this very fragile structure that’s supposed to address it, and we already know it doesn’t work because of the impacts on caregivers: depression, anxiety, suicidal ideation, higher rates of diabetes and heart disease, and so on.

I call it an inconspicuous tragedy, because it’s mostly playing out in private. But it’s a real crisis. If the traditional family cannot do what’s required, what can we do? Part of the answer has to be reimagining the family, thinking past the boundaries of ancestry and marriage. It might feel strange to reach beyond your household, and many people are ashamed of doing so, but we must create a broader base of support, rather than one person being obliged to provide all the care merely because they were born to the person in need, or married them.

I’m not saying, Abolish the family. I’m suggesting we change who we consider family. We’ve told ourselves a lie: that staying inside our separate homes is always safe. Depending entirely on immediate family is actually risky. I’m in my late thirties, and I see among my friends how we are all contracting into nuclear families. In ten years a lot of those friends will have parents who need care.

It says a lot about a culture that everywhere you go, there’s a neighborhood watch but no collective-care network.

Leviton: It occurs to me I sugarcoated the experience of families a hundred years ago. My mom had a sister I never met because, I found out later, my aunt had a mental disability and was institutionalized as a child. So my family didn’t just take caregiving in stride and pull together to keep everyone safe. They outsourced my aunt’s care for life.

Kenway: Yes, it’s not that we should go back in time. We should ask how we can rearrange the world now.

I’m suggesting we change who we consider family. We’ve told ourselves a lie: that staying inside our separate homes is always safe. Depending entirely on immediate family is actually risky.

Leviton: Tell me more about the concept of Circle. It’s a cooperative, mutual-aid, self-help group?

Kenway: Circle is staffed by one or two paid people who recruit new members, operate a phone line, and can access a database. Members call the line anytime they need anything—transport, food dropped off, someone to clean their windows, whatever. They can also look for a bridge partner or put together a group to go to the cinema.

It doesn’t sound all that innovative, but what’s actually happened over time is that people form connections through Circle and start doing things for each other that previously had to be arranged for them by government social workers or paid professionals. The more people join the Circle, the more resources there are, and the stronger that infrastructure is. By contrast, when more people place demands on paid services, those services become weaker. A collective-care network recognizes that everyone has needs and is also capable of giving. I learned about a man in his nineties who couldn’t leave his flat and mentioned to the Circle staff that he loved music. On his birthday they arranged for him to play a recording he loved down the phone line to other Circle members who loved music, too, and it became a regular thing. That man has a new sense of self and purpose in the world, and he knows there are people out there who care about him. If he does have to go to the hospital, they’re likely to visit him. It’s an inspiring and beautiful model of reciprocity.

Leviton: Bill Kauth in Ashland, Oregon, has been doing something similar, helping communities organize “tribes.” His 2011 book, We Need Each Other: Building Gift Community, sounds very much like Cottam’s vision. But US culture has always been committed to rugged individualism.

Kenway: And guess what? Each individual human has a body that’s going to fail at some point. We’re all going to need care or have to give it, or both. When you’re caring for someone who has imbibed that cultural lie of rugged individualism—or feminist independence, or whatever philosophy says relying on other people is shameful—it makes caring for them so much harder, because you’re constantly having to navigate these layers of shame they’re experiencing.

In my mum’s case that mindset was strong. She was a single mom who’d worked her way up in a job sector that was very sexist, and her independent spirit manifested as profound anger at being physically incapacitated. She refused to use a wheelchair even though she desperately wanted to go outside. It took weeks to make her feel OK about accepting a wheelchair, and then, lo and behold, she loved being able to go outside in it. I’d push her too fast, and she’d shriek. [Laughs.] We had a lot of fun.

Most of us are living in a fantasy of invulnerability, despite our fundamental fragility. I feel like a seer who can see what’s coming, and that’s really sad sometimes.

Leviton: I’m seventy-one years old, and I have friends in their eighties telling me, “Oh, enjoy your seventies, because it’s going to get a lot worse. You can do things now that you won’t be able to do later!” I’ve survived cancer, so maybe I’ve already done my part. [Laughs.]

Kenway: It’s unavoidable to have some denial. You can’t live every moment of your life with the knowledge of how ephemeral it all is. But it’s important to check in with that knowledge from time to time and let it affect the choices you’re making.

Leviton: We talked about how the population is getting older. What’s happening medically with the aging population?

Kenway: It’s not just that we’re living longer; we’re living sicker. The number of people with Parkinson’s disease, Alzheimer’s, and diabetes is escalating around the world. We sometimes don’t realize the longevity of people with those diseases and what that means for their care. Nowadays someone might live with dementia for up to twenty years. That’s longer than you have to care for a child before they’re off to college. People with Parkinson’s also typically live fifteen years after diagnosis. People with cancer are living longer while also suffering the aftereffects of the treatments.

My mum was technically cancer-free for a considerable chunk of the years she was ill, but she was sicker in remission than she’d been when she was first diagnosed. She’d had seven rounds of chemotherapy and a transplant, and her body was just ravaged by it. She was effectively disabled, but she didn’t have cancer, so she wouldn’t have shown up in statistics about the illness.

Leviton: When I was being treated for cancer, I was cautioned by friends to consider my doctors’ advice carefully, because some of them will do anything to keep you from expiring, and the treatment might be worse than the disease. Have you found that to be true?

Kenway: I certainly think medical professionals ought to reflect on how they would feel if they were having to live with some of the extreme side effects of medical interventions to prolong life. Again, this points to our fear of dying. We seem to believe the absolute worst thing that can happen to us is to die, rather than to be in pain or be incapacitated. That’s not to suggest that sick people are disposable. We need to support those with different abilities. And we need to recognize that modern medicine can prolong life in ways that may not be in the best interests of the patient.

It’s not for me to decide what’s best for others, but when the time comes and I’m very sick, I hope I will have the right to assisted dying. Right now there’s a big political fight going on over it in the UK. I don’t want to be forced to experience a slow death, the way my mum was, simply because we have made prolonging life a kind of holy mission.

Leviton: You also write about having sepsis and nearly dying when you were twenty. My daughter had a life-threatening staph infection around the same age, and it profoundly influenced the way she thinks about health to this day. Did your brush with possible demise likewise transform your thinking?

Kenway: It really did. I was a perfectly healthy twenty-year-old when I started feeling a bit unwell on a Saturday afternoon, and by the next morning I couldn’t walk, couldn’t speak. I was taken to the hospital and put in intensive care. It took a long time for my immune system to return to normal and for me to be strong enough to do basic things like carry a saucepan full of water. It certainly made me understand the brevity of life. After that, I couldn’t live in the fantasy that I could always rely on my body. I knew I needed to make choices that were in alignment with what I wanted in life, rather than heeding cultural pressures. A week or two into my recovery, when I was improving a bit, I remember listening to Leonard Cohen on the ward and thinking, If I want certain things to happen in my life, I really just have to do them.

I do my best to stay healthy—there’s a lot of cancer in my family, so I have to be conscious of that—but I know I’m a collection of cells and chemicals and processes that could go awry at any time. That experience of suddenly being very unwell gave me an inherent appreciation for my vulnerability. Believing in the infallibility of the body is a luxury I no longer have.

Leviton: I’m quite phobic about needles, and when my wife and I were told we’d have to deal with our daughter’s IV line at home for a month and administer her antibiotics, I thought, OK, you say you’d do anything for your daughter. This is your test. You’d better pass it. Aren’t many family caregivers having to administer medicines and follow medical protocols without adequate training?

Kenway: Your story is becoming more and more common: the medicalization of the home. We have people administering dialysis, sorting out feeding tubes, lifting someone out of bed. A lot of caregivers get back and wrist injuries for that reason. The training, if any, is minimal.

Why is the home being medicalized? There’s a lot of pressure to save on health-care costs. Many procedures that historically would not be done in the home, like dialysis, now are. But there are also more of these procedures being done overall. And that’s a good thing. We just haven’t made the investments needed to properly support doing them in the home. Untrained, unpaid caregivers are responsible for things they really shouldn’t be responsible for. In my book I write about Angela Goodhope, a mom in Iowa who must clean and disinfect her daughter’s central line—a catheter delivering medicine into a large vein—every day. If she does it wrong, her child might die.

A lot of family members, if properly trained, do an amazing job with these medical tasks. I certainly feel I became a good proxy nurse. And I think most of us would prefer to be cared for in our home instead of in a hospital, as long as we know the care will be as good. The Dana-Farber Cancer Institute and Boston Children’s Hospital are pioneering training programs for home caregivers, but there are still very few such programs. That’s ridiculous when you consider the level of risk and responsibility. Even when a nurse inserts an IV, there’s a chance of infection, of bubbles getting in the line—all sorts of things that could go wrong. Learning how to properly insert a catheter is lifesaving.

When caregivers are sent home with a loved one to do these medical procedures, half of them haven’t even figured out how they’re going to physically perform some of the tasks. For them to be treated as someone in need of help and not just the shadow of the sick person would be not only practical but hugely beneficial for caregivers’ psychological well-being.

Leviton: We’ve done this in a limited way already with CPR and the Heimlich maneuver, which millions of people now know how to do.

Kenway: Exactly. And family caregivers are doing the majority of the care. They’re at the hospital with the patient, and then they are seeing to the patient’s needs at home afterward. Yet they are often not regarded as important by doctors and nurses.

Leviton: I thought you were courageous in writing so passionately about the taboo subject of body care. As parents we change our kids’ diapers, but we don’t often think about the fact that they may be called upon to change ours, should we be lucky enough to live well into old age. Dealing with bedsores, incontinence, and other intimate details stirs up a lot of anxiety. How do those in need of care handle this compromise of their dignity and autonomy?

Kenway: I can’t speak on behalf of others, but when I had septicemia, I had to be changed. In fact it was done by a trainee nurse who was the same age I was, which was a bizarre, surreal experience. But I’m incredibly glad I had it. Yes, I was a bit embarrassed, but I was also very ill, and, honestly, when you are that ill, your modesty diminishes hugely.

That experience also helped me be a better hands-on caregiver for my mum. I was able to treat it matter-of-factly, to reassure her and say, “You know I’ve had this done for me, too. We’ve both been there, so who cares?” People imagine it’s going to be awful to have this done for them, but when they need it, they’re glad just to feel fresh, dry, and clean.

We also have to think about the caregivers who are forced to confront this change in their relationship with the person. Even if it’s a spouse, where it’s a part of the body we’re familiar with, we’re not familiar in that way.

People don’t want to hear about this. Investors are suggesting that sales of adult-incontinence items could equal sales of infant diapers in the next few years. When I put that fact in articles, editors keep taking it out. [Laughs.] The fact is most of us are going to be doing that thing for someone. We can pretend all we like, but it’s true.

Leviton: As you started to say earlier, who provides that care is a gender issue, isn’t it?

Kenway: Yes, the assumption is that it’s more appropriate for women to do intimate care than men. And that’s not just if they’re caring for other women. We allow this to be the story, and it allows men to avoid providing intimate care. Women do the majority of that care for infants as well, and the dirtier jobs in a hospital have historically been done by the mostly female nurses, not the mostly male doctors. We need to interrogate that history and, frankly, refuse it.

In Who Cares I write about a moment in my mum’s end-of-life care when I really needed a break. My mum didn’t have a partner, but her brother was there, and I asked him if he would be OK with changing her while I took an hour or two off, because it was likely she’d need changing. I could see a flicker of concern on his face, but he said yes, he could, and he stepped in. He was great. What’s wrong with that picture is that I felt I had to seek his permission, whereas nobody had sought mine.

For every man who gives reasons why he can’t move to be near the person in need of care, why he can’t work less or stop working, why he can’t do the intimate care, there’s a woman who doesn’t even have the chance to think about whether she can perform those tasks.

Leviton: It’s a long-standing stereotype that women like to give care and men don’t.

Kenway: It’s not that women can’t make a personal choice to provide care. I was glad I could take care of my mum. It’s that we are culturally brainwashed—all of us, men and women—to think there is an appropriate gender to do toilet and washing duties for sick people. And that means women have to be able to work part-time and not be taken seriously in the career world, and therefore men have to be the main earner. Health care is a big piece of the gender-inequality puzzle.

Leviton: You write that male family members, when they do participate in caregiving, tend to do tasks that are not urgent and have more flexibility as far as when they need to be done.

Kenway: Yes, men do legal paperwork or accounting and take care of things that need to be fixed around the house. Women do the continual, daily care and have their personal schedule constantly disrupted and changed. This is so common, people don’t even notice it’s happening.

When men do provide care, they are more likely to care for their spouses, while women will care for a broader range of family members: parents, aunts, uncles, children with disabilities. This means women do more caring during their lifetime, because they care for multiple people. Men will say they give care out of love, while women tend to do it out of a sense of duty. But it’s a duty that should be shared.

I went on an eleven-day, coast-to-coast hike across England in September 2019, after I’d arranged for my mother’s siblings and paid professionals to cover for me. I went alone and met other hikers doing the same route, mostly men around retirement age. Many were married, but their wives hadn’t come along. A couple of the men told me their wives couldn’t join them because they needed to care for elderly mothers—not their own mothers: their husbands’ mothers. I guess it’s possible they just loved their mothers-in-law that much, but to me this sounds like a convenient arrangement for the man.

For every man who gives reasons why he can’t move to be near the person in need of care, why he can’t work less or stop working, why he can’t do the intimate care, there’s a woman who doesn’t even have the chance to think about whether she can perform those tasks.

Leviton: You mentioned hiring professionals. In the book you write that anytime you’ve gotten professional help, whether from an agency or a government program, the arrangement has required a certain predictability and stability that clashes with the actual reality of home care.

Kenway: Right. Each morning is a game of roulette for many caregivers: Will today be the day your father remembers how to make an omelet for himself, or will he leave the frying pan on and start a kitchen fire?

When I talk about the crisis in caregiving, people often assert that the fix is to increase the number of paid health-care workers, whether they are provided by the state or paid for by insurance. But that fails to take into account how unpredictable sick and disabled bodies are. There might be stretches where it’s feasible to have someone come in on a regular schedule, but then the situation will quickly turn on its head, with stays in the hospital, diagnostic changes, alterations in appointment times, and so on. The only way to create a paid service that exempts family members from needing to be there would be to have warehouses of care providers sitting around waiting for emergency calls, which I don’t think anyone would say is an appropriate way to treat them. Paid workers need to have predictable hours.

Also when we think about paid workers as a solution, we need to consider what that means from a racial-justice perspective. The second-wave feminists of the 1970s were mostly middle-class white women who wanted the right to work outside the home, which meant someone else needed to do the housework and childcare. And that someone else was almost always another woman, often a poorly paid, migrant woman of color. Still is. In your country and mine, paid care workers are often living below the poverty line. Statistics show they are more likely to use food banks than other families. It’s a deeply racialized division of labor and tracks back to the history of colonialism and enslavement. We cannot build a solution on that injustice.

Of course, it also means those hired women are not caring for their own loved ones. What do they do if a family member gets sick: hire a migrant woman who’s even poorer? Academics call this a “global care chain.” We have to move on from this idea of hiring more women and ask ourselves why we are so quick to want someone else to care for our family members instead of us. I believe we need major changes in the way we organize work. If we reduce work hours for everyone, we will all have the time to provide the care ourselves.

Leviton: You’ve also said that people who need care prefer to be cared for by someone they know.

Kenway: Yes, you might think you would like this kind of help to come from strangers, but you’d be amazed how quickly that attitude changes when the situation becomes reality. Most people in need of care want someone they know to care for them. Accepting help from an agency tars them as vulnerable, needy. There was a UK study done of elderly people who’d been lying to government authorities about not needing help because they didn’t want strangers coming into their homes. Neighbors had to step in. Ask people you know who have family members who can’t look after themselves properly. They will tell you: “Oh, no, she won’t have someone come in,” or, “He doesn’t want that.” This tendency to refuse outside help is another reason we can’t solve the care crisis with more paid workers.

Leviton: Does what’s called “caretech” represent the future of caregiving?

Kenway: There’s more and more technology involved in care, and some of it will effectively undermine care workers. Machines are now used to monitor, assist, and provide companionship. I talked to a woman in Norway who uses an alarm system to track her son, who has Down syndrome. My mum had an Alexa so she could turn the radio off and on by voice command. “Carebots” are robots that are used for special services, including physically moving objects. The paltry pay of care workers is likely to go down even further as more technology is introduced. And while these technologies may appear helpful to family caregivers, often they still require someone to be around to adjust or program or repair them, and that can create another headache.

Leviton: In 2023 the Biden administration proposed minimum staffing standards that would require the most thinly staffed nursing-home facilities to hire additional caregivers. There’s no provision for family care in the proposal. What’s your reaction?

Kenway: I suspect Biden, like many people, believes that residential-care homes are the bigger part of the solution, which is incorrect. What we’ll probably see is that the fees charged will go up. And, again, we’ll see entrenched inequality in the availability and quality of care. The salaries of care workers will probably go down to offset the additional cost of hiring more of them. It hits all the people it shouldn’t be hitting.

Leviton: I noticed striking United Auto Workers are asking for a transition to a four-day workweek as part of their demands, but I haven’t heard anything about them asking for paid leave for caregivers. Why not?

Kenway: If someone we love gets terminally ill, we should all have the right to take time off work to be with them and still get paid. We shouldn’t have to make a choice between caring for them and poverty. It’s inhumane. Paid leave exists in some countries, and we know it works, but in others we are seeing private-sector solutions instead. And I use the word solutions in the absolute loosest sense.

Instead of enabling employees to be there for their loved ones, companies are giving employees credits they can use with Care.com, which is like TaskRabbit for care workers. You are sending some poorly vetted gig worker into your loved one’s house so you can stay in the workforce in the way capitalism deems acceptable. That’s not really a solution at all. Some employers are doing better than that, but as long as we treat paid leave as voluntary, it’s likely the workers with the least power will never be able to get it.

The four-day workweek is closely tied to this subject. If we’re working fewer days, we can be home providing care more days. That would be part of a radical overhaul of the balance between work and care. I know it’s a big ask, and it’s obviously not coming to my country or yours anytime soon, but having a weekend was a big ask in its day, and now we think it’s normal. The four-day workweek needs to be mandatory and universal, because if it’s just an arrangement I can request from my employer, then it will only be women who request it, and we’ll just have the same situation we have now, with lots of women working part-time or flexible hours to care for loved ones. I say let’s just assume every single worker might be a caregiver and therefore can’t be working five days a week.

Once we start to recognize that most of us will, at some point, have to step out of our professional role to provide care, then we have to transform how we’re running our economies. At the moment, our economies are relying on these hidden tragedies that befall women behind closed doors. All to keep the wheels of industry turning.

Leviton: The needed transformation seems out of reach in the same way that responding to climate change and transitioning from fossil fuels seems so distant.

Kenway: The care crisis and the climate crisis are both at their root about a value system that prioritizes independence over connection. We are always interdependent, yet we prioritize domination and strength over togetherness and vulnerability.

The caregiving challenge we face is huge, and not just on the governmental level, but on the personal level as well. Still, I think there are reasons to be optimistic. One is that with the trends on aging, sickness, and birth rates, this impending tsunami of caregiving is becoming impossible to ignore. What we’ll be dealing with in another ten or twenty years is a catastrophic level of need that we’re not in any way geared up to provide. So the most terrifying prospect of the crisis is also a source of hope.

Another reason I have hope is that some of the solutions I’m talking about are happening already on a small scale and have proven to be practical and possible. For example, over the last five years there have been trials of the four-day workweek all over the world, including in Spain, Canada, Australia, and the US. Some were conducted by private companies, including seventy companies in the UK in 2022. Other tests have been conducted by governments and municipalities. And they’re all coming back with results that capitalism loves: no loss in productivity or profit. There’s also less employee turnover, and people are happier at work.

If businesses go with a four-day week because it’s good for profits, that’s OK with me. I’m hoping there’ll be a domino effect over time, with more and more experiments that produce the same results.

Cohousing and mutual-aid arrangements in neighborhoods are also proliferating. I cannot exaggerate the appetite for this I’ve encountered in people of all ages and from all cultural backgrounds. People want these types of connections; they just aren’t sure how to make them. But as people have fewer or no children, they’re going to be depending more on their friends. Many older people won’t have the money for their own house, and the idea of cohousing will appeal to more and more. There are already governments providing subsidies for cohousing.

The European Union required all its members to provide five days of unpaid caregivers’ leave by mid-2022. Obviously this is too little, but it would have helped me when I was taking care of my mum. It would have been helpful to have the legal right to take time off to transport her to the hospital and juggle everything. These are first steps, the thin tip of the wedge, but I think that’s where we have to focus. Otherwise we’ll lose heart.

The way we’ve transitioned to working from home since COVID may prove helpful. People who work from home can provide the kind of care that requires them to dip in and out during the day. I was able to work from home when my mum was having a bad patch and I needed to check her temperature regularly, fix her food, and so on. But we’re now seeing a backlash from bosses like Elon Musk, who want employees in the building. It isn’t quite clear yet which way it’s going to go. I do worry that if people are allowed to work from home in greater numbers, it’ll be used as an argument against the need for paid leave. But there are levels of care. You can’t expect someone to provide constant care and do loads of detailed work simultaneously.

We need to stop viewing care as an economic sector and see it as a “species activity.” That’s not my phrase. It was coined by feminist theorists. But it points to caretaking as a fundamental behavior, like eating and sleeping. Caregiving isn’t easy—I’ve done end-of-life care, so I know how hard it can be—but it can be natural. We have no choice except to care for each other. In “sector” thinking, care is something someone else does, not something that’s going to happen to you. So it’s irrelevant. But it can’t be parceled up and put in a corner. The reality of care looks very different from the economic way politicians talk about it. If we can rearrange things to meet that reality, people like you and me and everyone else will avoid a great amount of personal pain. My goal is to prevent other people from going through what I did.

If someone we love gets terminally ill, we should all have the right to take time off work to be with them and still get paid. We shouldn’t have to make a choice between caring for them and poverty.

Leviton: So you’re saying the crisis can’t be averted by throwing money at it; it requires new thinking?

Kenway: Certainly money is part of the solution. We need to be funding services better. We need to support decent income for everyone. No one should become destitute because their loved one got sick. But money isn’t an escape hatch. It doesn’t address our fear of death, our lack of community, and so on.

Neither the UK nor the US is experiencing its best political moment right now, so we can’t depend solely on government to make changes. But there’s a lot we can do ourselves. I try to live out my principles in my own life. I’m currently trying to set up a peer group informed by Cottam’s ideas for Circle. And I’ve volunteered to be “next of kin” for people who don’t have anybody.

Leviton: I’m about twice your age, and I often feel like my generation is leaving a real mess for you ecologically, economically, and socially. We made some progress, but not enough for the time we had.

Kenway: It’s interesting to hear you say that. I think we have to understand these issues are iterative; they repeat from generation to generation in different guises. It’s not possible to fix the problem once and for all. We need solutions that are, above all, human, which means they will be flawed, but we’ll try again. I don’t think there’s an alternative to that. Progress contains moments of decay, when the old dies and mulches and provides soil for something new to grow. And new seeds will grow.