Our common idealized understandings of caregiving duties make them into obvious obligations that take place as private matters inside the home rather than concerns of the public sphere. They treat caregiving for our ageing parents as a simple yet demanding interpersonal duty, often one that we owe because our parents cared for us. As my mother and I used to joke with each other, she changed my diapers and someday I will change hers. We don’t make this joke anymore.

This and related components of the dominant view of caregiving are part of an ideal theory ill-suited to the world in which we live. It does not come from a specific theorist. Rather, it is revealed in the implicit premises, the unquestioned assumptions, that underpin how we approach informal caregiving. The dominant view holds that caregivers owe an almost unlimited debt of care either to those who have cared for them, who allegedly would care for them if circumstances were reversed, or as part of a Pay It Forward chain. This is especially true for women but not only for women, who are positioned by patriarchy as what Kate Manne (Reference Manne2017) calls “human givers” rather than human beings. Applying this to caregiver burnout, Emily Nagoski says:

Her co-author Amelia Nagoski adds, “If one giver says ‘Nope’ and goes ahead and has a need of her own, she’ll be punished by other givers and if there is no one else around to punish her, she’ll go ahead and punish herself if she’s internalized this moral obligation.” We can see this dominant ideal theory of care in the negative judgments made about those who refuse to fulfill this almost unlimited duty of care, irrespective of circumstances on the ground. It is ideal theoryFootnote ¹ because it fails to account for circumstances on the ground, and it is dominant because it structures so much of interpersonal moral judgments and of social responses. Indeed, this classic view lionizes informal interpersonal care of this nature, positioning it as superior to formal caregiving because of what Matilda Carter (Reference Carter2023) calls “its intimate, personal, and loving nature.”Footnote ²

Such ideal theory portrayals of caregiving as personal rather than political, as part of the private sphere rather than the public sphere, or as simplified matters of duty between individuals, miss the mark. My mother and I learned this the hard way. Perhaps this musing can help people learn this in a much easier way.

I turn now to Eva Kittay whose work embodies a vastly richer approach to thinking about caregiving than the aforementioned dominant ideal theory. Over two decades ago, Kittay wrote (Reference Kittay2002, 243):

As Kittay and generations of feminists have argued, the demanding work of care is paradoxically undervalued and fundamental to the continuation of society.Footnote ³ Indeed, Kittay’s principle of doulia famously puts an obligation on society to support care workers: they make society’s continuation possible by caring for persons of any age with temporary or permanent needs for such labor. While I’ve written previously on what society and the state owe to those who render care, ^{Footnote 4,} here I interrogate the limits of the care worker’s duty to provide care under a system that is oppressive to care workers. Self-care can justify saying “no” to care work in this non-ideal world, but for these very same reasons of non-ideality, this option is simply not open to everyone. Who it is open to distressingly both tracks and levies other systems of oppression.

Such care work can be obligatory within certain kinds of loving relation. Even when we want to perform such care and it is clearly obligatory to some degree, it can destroy us, especially given that society does not in fact support care work or care workers. We are not governed by doulia, even if we ought to be. And this destruction of the care worker is much more likely to fall upon people who do not occupy hegemonic masculinityFootnote ⁵ in all its maleness, whiteness, aggressiveness, and disdain for care work or anything else framed as “women’s work.” Care workers simply are exploited, their labor redirected to the benefit of others and of society as a whole without adequate compensation or material support. Exploitation is one of Iris Marion Young’s five faces of oppression (Reference Young1990). And caregiver exploitation is part of a system of oppression within which all care work is performed, unpaid and paid.

I said earlier that self-care can justify saying “no” to care work under such a system of oppression. But what is meant by “self-care”? This is no “Calgon, take me away!” self-indulgent marketable self-care that gets stressed out women—of a wide array of socio-economic strata—to simply buy products and services in the name of focusing, finally, on themselves. Nor is it the self-care of so many scholarly articles and caregiver support websites which urge caregivers, without material support for doing so, to “find time for themselves” or “take a break from caregiving” or “practice yoga.” For decades, advice to caregivers has urged them to manage stress by finding “leisure activities” they can do with the care recipient, as if this is leisure.Footnote ⁶ In a terrible irony, such “self-care” advice makes the caregiver individually responsible for making themselves able to provide individualized care.

Rather, the robust self-care that justifies saying no to caregiving is the self-care needed by those who are expected to be self-abnegating, to accept a logic of depletion. It’s the self-care that insists that we, too, are worthy of care. That we do not exist purely for others to extract value from us. That we also deserve a flourishing life. That the logic of depletion which positions us as “human givers” is poisonous.

Many feminists come to self-care through the Audre Lorde (Reference Lorde1988) quote that “caring for myself is not self-indulgence, it is self-preservation and that is an act of political warfare.” But this is incomplete. The full quote in context—from her 1988 essay collection A burst of light—runs like this, written in the throes of cancer treatment:

When Audre Lorde describes the consequences of overextension, she does so not only because one cannot endlessly fight the good fight of activism, but also because fundamental to the oppressive structures in which she lives is the belief that black women must give and give and give, even to their own detriment, to support their men, their parents, their children, and their community. And that black women are seen very much by white folks as also in a position of giving and caring while not deserving the same in return.

Wrapped up in our culture’s insistence that caregivers must care indefinitely, with extraordinarily minimal material support, is the same depletion logic that Lorde resisted. Part of caregiving under systems of oppression is that self-care in the face of depletion logic is liberatory. Saying no can be liberatory: a “no” places limits on what others can demand or expect. It can certainly justify fulfilling these duties by proxy through mutual aid or hiring out. Self-care insists that the caregiver is worthy of existing for something other than the care of others. But in this non-ideal world, to what extent can one say no? Who gets to say no? What does it cost others, when some of us say “no”? And how does this depletion work?

We turn now to a case study. In the time-honored feminist tradition that the personal is political, it is my own. Fair warning: this description will be “thick” rather than “thin” (Geertz Reference Geertz1973), real rather than ideal. The level of detail may seem Too Much. I assure you this conveys a fraction of how very Too Much it all was.

Recently, my mother’s health has declined and fluctuated, requiring anywhere from five hours of care per week to 60 hours of care per week, at unpredictable intervals. At first, this would involve a minor issue that took a few weeks of panic, worry, and urgent medical visits to determine was minor. These began in 2018 and would happen once or twice a year, including the occasional urinary tract infection (UTI) related to a decade-old chronic health problem.

All of this changed instantly, catastrophically. In late September of 2021, Mom was knocked to the ground by a car that was not firmly in park on a slight incline. It rolled toward her, and the tire came to rest on her leg, pinning her until emergency services arrived.

The resulting crush damage badly injured muscle, vasculature, and lymph structures. Her kidneys and liver were overtaxed trying to clear the proteins and dead cells produced by massive trauma. The sudden inability of her body to clear fluids from the leg, already impaired by her congestive heart failure, led to massive fluid retention in the leg. This caused blisters as the fluid got between layers of skin and muscle, rather horribly called “degloving.” Some blisters popped and became infected. Undetectably, the infection spread into a fluid pocket, or abscess, in the lower leg. We wouldn’t learn this for months. I spent long days in the hospital and rehab facility every day of the week, for weeks, to coordinate care. This was worsened by COVID-related staffing shortages, ranging from untenable nurse–patient ratios to a near total absence of nursing assistants to help with hygiene, toileting, food, and water. Without me there to press for pain relief, to bring water, to hunt people down in the hallways, her care would have been worse than it was, even though she was still in-patient with all services covered by Medicare. At first, I went into a kind of hyper-competent crisis mode, teaching medical ethics classes over Zoom or pre-recording teaching videos from her hospital room. I thought it would be temporary. I could bear it, and all the rest of my life, for a time. But I didn’t realize the scope or scale of what the next year of my life would be like. No one did. No one could.

Upon discharge to home, home nursing recommendations included only two to three nursing visits per week, at which wound care would be performed by the nurse. These were wildly unpredictable, and usually scheduled via phone the day before the visit. If my mother did not pick up the phone because she was delirious from pain or a UTI or because of her hearing impairment, the nurse would not come. When nursing visits took place, the ever-shifting array of nurses with wildly different training meant that I often had to be present and train the nurses again and again in how to provide the care required for this type of wound, in which I had been trained by the wound care clinic. The remaining twice daily seven days a week (14 times per week) wound care—sterile, skilled, careful, without ceasing, for at least two hours per visit initially, not counting assistance with activities of daily living such as showers, medication, toileting, pet care, transport to doctor’s appointments, managing complex medical care for other conditions, as well as personal finances and more—was covered by me. I know many things I did not know before. I have narrow but deep expertise in chemical wound debridement, sterile technique or as close as one can get in a home setting, many different kinds of bandages and ways of binding them to a wound when the skin around it is so fragile that adhesive risks causing more skin damage, more sores, more infection.

My partner said: “if you were a son, they’d have given you more home health support … they’d never have expected this of a man.” And maybe he was correct. Regardless, the toll was 35–50 hours per week for many months, sometimes spiking to 60 hours or more with the occasional overnight stay at her house, reducing somewhat as wounds healed, but increasing with every infection, skin graft, and more, until full healing was achieved six months later, in April 2022.

But this was not the end of Mom’s cognitive impairments, a result of repeated infection and other underlying conditions including vulnerability to mini-strokes and constant pain from nerve damage at the site of the wounds. Her cognition was so impaired that she could not safely take her own medication. This caused other cascading health issues. Ironically, both pain and pain meds compromise cognition, and sometimes speech. On one memorable occasion, I stood at her bedside for literal hours pressing an abdominal hernia back in so that it would not become strangulated and cut off blood flow to a loop of intestine, while she murmured incomprehensibly. In her only clear phrases, she called me “mother.” Those very bad times were unpredictable, and interlaced with much better, simply confused times. She could not manage on her own for more than a few hours. Her medication alarm on her phone would go off, and she couldn’t remember why, or might be in the middle of something and tell herself she’d do it in a minute but forget. Once, she became anxious about her meds and removed them all from the carefully organized five times-a-day pill sorter, putting them back wrong. She did, however, have a roommate, a college student who received free rent in exchange for being a companion and managing medications. This only worked when the student was a safety net. Once someone other than my mother had to be present for all medication times and prepare all the medication boxes, my mother’s roommate and I struggled to cover even just her meds.

As care demands became higher, Mom’s roommate, too, could no longer keep up because she had classes and work. If I was not on hand for each meds interval, at least one of four or more daily batches of medications would simply be skipped. We could not get a reliable system. We despaired. Mom even tried sitting up all night to make sure she was awake for her first dose in the morning. But of course sleeplessness and impaired cognition are a vicious circle from which there is no release.

Inevitably, a UTI would occur, or her abdominal hernias would flare up, or some other new health condition would arise. I would have to drop whatever I was doing for my kids, my own life, my work. On any given day, I might go from the predictable “confetti time”Footnote ⁷ of a day broken by multiple visits to her house from dawn until dusk, to a total care situation in which I must cancel all commitments. I was somehow there so much that I was not fulfilling my other duties, and yet not there enough to keep her well.

I began to deteriorate. I have a wide array of self-care techniques, from noticing nature fine-grained, to cycling alone and with friends. But my world had shrunk: I yo-yo-ed between her house, my house and the office. I could not travel for work or for leisure. I could not go far from home for any reason or length of time. On one memorable occasion when I tried, I was hiking in a valley at a state park when a visiting nurse called to tell me Mom had an infection in her leg wound. Mom was refusing to go to the hospital by ambulance and wanted me to take her. But the call went to voicemail because I was too far from a cell tower. When we got to the top of the ridge, the voicemail alert came in. It was still a 30-minute hike back to the car and then an hour drive home. We went straight to the hospital where Mom had agreed to go by ambulance when I proved unreachable. They finally discovered the abscess.

I didn’t dare hike in such a way for a long time. Nothing was enough for the Too Much until I deployed the self-care tool of last resort: “no.” What comes next is the point at which I realized that neither I nor mom would be able to flourish if I continued to be her primary medical caregiver.

In late May of 2022, Mom’s pain was severe and this was so disabling that she could not call for help. Because this was mild the previous day and only worsened in the hours after her last medication of the day when she lay down to sleep, and because her roommate had overslept the next day when I had arranged with her to cover the morning shift so I could get some rest, Mom went undiscovered for almost 14 hours. She was so cognitively impaired that when we arrived in the ER and they put a tube down her esophagus to get air out of her belly, she kept trying to pull it out. They put her hands in cloth restraints tied to the bed. I sat by her bed for hours, holding her hands gently to keep her from pulling against the restraints while she begged me to release her or take the tube out. I explained again and again why it had to stay in. At one point, I simply had to urinate. Two nurses were present to change her IV bags, so I told them she’d been trying to remove the tube and asked them to please watch her while I went to the restroom. I was gone for less than three minutes. During that time, Mom found the strength to sit up and lean forward very quickly, bringing her face to her restrained hands, while the nurses; hands were busy. She grabbed the tube, sat back abruptly, and pulled it all the way out. They would not put it back in because it was so clear she would simply remove it again; the pain from air and fluid in her belly continued. It turned out she had a perforated bowel, entirely unrelated to the accident. Dehydration from not being discovered for so long, combined with the physiological stress of diagnostic tests that involved contrast dye two days in a row, led to acute kidney injury. For a few tense days, we thought she might be dying. I prepared to turn down interventions including dialysis in accord with her advance directives. Relatives flew in from out of town thinking it was their last chance to say goodbye. As you might guess, this was not the end. Within a week, she had recovered. Her bowel slowly healed and she strengthened with physical therapy, but we both realized I could no longer care for her at home. We were able to find a place for her in an assisted living facility and she moved in.

Several serious conditions remain including but not limited to an unidentified belly mass, chronic pain, her bladder condition, and congestive heart failure. There have been several major hospitalizations since then, unrelated to the accident, but related to other chronic conditions. Even with access to hospital care and rehabilitation facilities through Medicare, and now access to assisted living (AL) through our family’s intergenerational accumulation of financial resources and Mom’s own far-sighted purchase of long-term care insurance 20 years ago, I spend large amounts of time on a wide variety of caregiving tasks. With good, consistent care from the AL staff, she has regained cognitive function, and is a much-sought-after bridge partner. Hospitalization remains a yearly event and I continue to support medical decision-making and handle financial matters. However, the AL staff now handle the UTIs, daily medication, and personal care tasks that turned my life into confetti. In the time since Mom moved into assisted living, she has had serious medical incidents that might have gotten missed were she still living at home, including a near-lethal blood infection in 2023 and a series of mini-strokes in 2025. In addition, we no doubt would have continued to make medication errors. This transition was good for her, not just good for me. But it was only good for her because of the high quality of care she receives. And because we can afford it. The costs of good assisted living care that has granted my mother reliable care and returned a goodly portion of my life to me are exorbitant. Such care-by-proxy is available to very few people. And saying “no” to caring for her in the absence of good care-by-proxy would arguably have been profoundly immoral.

What does this reveal about how the ability to say “no” to care labor, however justified by self-care, in fact depends on accumulations of wealth that are also part of deeply unjust socio-economic systems? Quite a lot. But it’s not the only oppressive system I levied to be able to responsibly say “no.” Feminist theorists have long acknowledged that a core problem with the way that women with financial resources can fulfill their care work and domestic labor duties by proxy is that it involves paying low wages to others. This trades one person’s exploitation for another’s. And this is exactly what I did by using our family resources to hire someone else to care for Mom. Alas, since formal caregivers such as my mother’s AL staff are paid so poorly, our non-ideal world makes an attempt to remedy one injustice into an act that leverages other injustices for its very possibility.

One of my few consolations is that the unpredictable duties and the predictable high frequency duties that were depleting me are now being performed by workers who get to go home at the end of their shift. The work changes, becoming shift work rather than the all-consuming 24/7 work that faced me, and sometimes Mom’s roommate.

Nonetheless, it remains the case that my relief from the most depleting aspects of caring for my mother required me to levy both oppressive socio-economic factors that resulted in our family’s relative privilege, and to levy the very same oppressive system that devalues caregiving labor and led the health care system to expect me to perform such demanding work. But what is one to do?

I can’t resolve this here. We live in a non-ideal world, and ideal theory views of caregiving fail to address both the burdens of unpaid caregivers and the logic of depletion to which they give rise. In this non-ideal world, full of oppressive systems, we must do our best to navigate them even though we cannot escape from some in attempting to escape from others.

I hope this musing has prompted musings of your own about self-care and how it can justify placing limits on, and saying no to, caregiving, especially given the logic of depletion that is inherent to our current system’s oppression of caregivers. Shifting who does the caregiving, though, doesn’t change the system. It remains oppressive to caregivers. Converting it to shift work is the only major reduction in the incredibly high demands, with incredibly low compensation and social support, that intensive medical caregiving presents. It is only through robust doulia that saying no to caregiving, even on grounds such as self-preservation, will not simply transfer the problem to someone else. Under an oppressive system like ours, in this very real non-ideal world, that “no” can be liberatory. For some. If they have the resources to pull the levers of the very system that oppresses them, as well as systems that privilege them, thereby shifting the burden to others. All caregivers deserve better than the logic of depletion. We’re not there yet. Maybe we will never get there. Perhaps it will be, as Kate Norlock (Reference Norlock2018) says of all justice-oriented movements, a “perpetual struggle.” But, as the kids say, the struggle is real, and we forget that at our peril.