The time before death stretches longer than ever now, thanks to medicines and operations that prolong the years of those with chronic illnesses. Age-related diseases are multiplying exponentially in the UK, where the number of people living with Parkinson’s is expected to double by 2065. Worldwide, 10 million new cases of dementia are diagnosed every year. The size of the market for adult incontinence nappies is projected to reach $24.2bn within three years. As more people grow old, more will need care. We don’t often talk about this, or even like to think about it, because doing so means contemplating our mortality and the undignified dependence on others – often strangers – that ageing implies.
Emily Kenway, a writer and activist who lives in Edinburgh, first began to think about this when her mother fell ill in 2016. She had a lump in her neck and was always tired. A series of tests and biopsies revealed she had blood cancer. The luminous ink that doctors injected into her veins showed how far it had spread, lighting up the scan of her body with yellow splashes “like cruel suns”. Because Kenway’s mother was single, and her older daughter a new mother, it fell to Kenway, then 31 and childless, to care for her. Initially, this didn’t require too much work. But as her mother became more ill she needed more care, and Kenway resigned from her job at a charity to be by her side. She learned everything: how to dry someone so they didn’t get sores; the parts of the body most demanding of emollient cream; the “fuzzy halo of a pussy willow” that grows after chemotherapy in the places where hair used to be. The consultant was “going for the cure”, treating her mother like a specimen whose remission would be a triumph of medicine over adversity.
These experiences inspired Kenway’s new book, Who Cares. The idea of care brings to mind elderly relatives shunted into homes when their time is almost up. Kenway is more interested in the invisible gaps where neither the state nor the private market provide adequate solutions. Her mother died in September 2020, freeing her from the burdens of caring. But the experience showed Kenway how this freedom was always an illusion. “I’d only been in waiting for this time when my dormant unfreedom would wake,” she writes. Nobody faced with a wailing toddler or a senile parent is really free, even though they may have freely chosen to be there. “I did not want to care for my mother, because I did not want any of it to be happening… but I did need to care for her. I didn’t have a choice”.
Care – who gives it, and who gets it – is often understood in relation to government policy. If the state created a properly funded social care system, people would no longer have to sell their homes to pay for their care, and their children would no longer have to quit their jobs to provide it. The unspoken assumption is that caring for the aged or ill is something that nobody would choose to do. Yet state provision is not a panacea, and focusing on this alone overlooks how care occurs in daily life. In wealthy countries that have generous welfare states, friends and family members still provide the majority of care to loved ones. It may be supplemented by state services, but accessing them is not simple: it requires forms, phone calls, and being at home to let the care worker in to the house. In Sweden, a country often considered a beacon of welfare policy, nearly a fifth of the adult population provide familial care, with almost a third of those people caring for more than ten hours a week. Far from surpassing the need to care, more of us are going to have to do more of it in future, particularly as the global population of elderly people grows (it is expected to double by 2050).
[See also: Now that I have cancer, how should I live?]
Kenway’s book is a compassionate hybrid of memoir and manifesto. She recognises care as an inescapable condition without ceding ground to those inclined to see it as women’s work. The postwar welfare state relied upon the unpaid drudgery of women from Kenway’s mother’s generation; for them, escaping caregiving was a feminist goal. While healthcare in Britain was made universally available and free in 1948, social care was means-tested and devolved to local authorities. Provision has been patchy ever since. In Unemployment: A Problem of Industry (1909), William Beveridge explained how the ideal family unit was the household of a man, wife and children, “maintained by the earnings of the first alone”. This long-held assumption that care would be provided in the community or at home is partly why hospitals now find themselves dealing with a critical shortage of beds: there are so few places to send elderly patients who are well enough to leave hospital that they become stuck on wards while incoming patients wait in ambulances outside.
One answer to the gendered nature of care is to recognise it as vital infrastructure on which the rest of the economy relies. If there was nobody at home to cook and clean, to pack lunches, ensure medicines were taken and homework completed, workers wouldn’t be able to do what bosses demand of them. Yet seeing care only as work, or as a task that is mainly of benefit to the wider economy, means it can easily be foisted on to low-paid care workers. A similar logic applies to the Conservatives’ approach to childcare. Cutting the ratio of childcare professionals to children only makes sense when the availability of care is prized above the quality of services or the conditions for workers. While such services allow middle-class parents to return to work, they offer a raw deal for the low-paid women who provide them. There are “two types of women when it comes to care”, Kenway writes: those who must fight to be freed from caregiving obligations, and those who must fight “to care for [their] kin at all”.
While in hospital at her mother’s bedside, Kenway met a woman who embodied this second type. Dressed in a medical tunic and black trousers, she often seemed harried and exhausted, her backpack half-zipped as if she had left somewhere in a rush. She would sit next to a girl on the ward before disappearing again. While taking the lift to buy some Lucozade, Kenway asked her who she was visiting. The girl was her daughter, an inpatient with sickle cell anaemia. The woman was a care worker, who could only visit in the small breaks between shifts that were spent caring for other peoples’ relatives. “The liberation of one category of women has been at the cost of others’ freedoms and choices, leaving them relegated to that very burdensome, undervalued toil, and preventing them from caring for their own sick loved ones,” Kenway writes. “It’s the kind of uncomfortable truth that my mother’s generation of feminists might not have noticed… partly because they were too desperate to be relieved of carrying care for our species.”
Widely available care services are vital, but a solution is needed that doesn’t rely on outsourcing care to a largely invisible workforce. As Kenway acknowledges, this will require more flexible working policies and better pay for those providing care both in the family and beyond it, as well as social structures such as co-living spaces and mutual aid groups that meet peoples’ needs without making them feel needy. All of this will only be possible with more government funding, and a shift away from a welfare system premised on rationing access to scarce resources. Such a change is difficult to imagine, particularly in Britain, partly because it’s more convenient to relegate the elderly and sick to the margins of life. In doing so, we ignore the reality that one day we will join them.
Who Cares: The Hidden Crisis of Caregiving, and How We Solve It
Wildfire, 336pp, £22
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[See also: In search of a language of loss]
This article appears in the 24 May 2023 issue of the New Statesman, The Tory Crack-Up