Most people imagine aging, if they think about it at all, as gentle and graduated: easing into old age at home surrounded by family, their former selves still legible. Or they imagine passing away peacefully in the night, skipping over months or years of dependency. For those who imagine themselves at home, their preference for “aging in place” reflects a common wish for their aging body to remain tethered to the identity and routines of the life they’ve already built, rather than surrendered to the machinery of institutional care. But the reality is that aging in place is usually only possible with the help, or at the expense, of friends and kin.
The problem here, argues Erin Ice, a sociologist at The University of Texas at Austin, is not that families fail to step up, but that the nature of caregiving today inevitably concentrates around one person, regardless of who else is willing or available. After years studying what caregiving looks like in everyday families across the U.S., Ice has identified a phenomenon she calls “singular caregiving.” It’s what happens when the proverbial village doesn’t quite manifest and most or all care is provided by one unpaid kin caregiver.
Singular caregiving, which is widespread, is likely to increase as the U.S. population rapidly ages. Currently one in six Americans is aged 65 or older, and the number is projected to grow to 83.7 million total by 2050, according to the U.S. Census Bureau. Many from this population will require some kind of long-term care, whether in-home, in assisted living, in a nursing home, or some combination of the above. Older adults and healthcare organizations overwhelmingly prefer aging at home, but few public programs support that preference, and few individuals have enough nest-egg savings to cover the growing costs of paying someone else for full-time care. As a consequence, family, friends, and spouses take on the vast majority of caregiving assistance for aging adults, typically without pay.
Ice’s research pulls from interviews, ethnographic fieldwork, national surveys, analyses of family dynamics and labor markets, and studies of cultural ideals of independence. Navigating this labyrinth of material — her research centers on stroke recovery but also touches on other conditions, including dementia and related disorders — has led Ice to an understanding of how conditions both inside and outside the home converge to place the responsibility of caregiving on one person’s shoulders, even when there are other kin and friends who are willing and available to share the responsibility and labor of care.
“Once you’ve been doing this for a while, you can’t just hand it off,” Ice says. “Other people want to help, but they need you to tell them exactly what to do. Which is the thing. If caregiving were just a set of tasks, divvying them out would be easy, but it’s not.”
She comes to the subject of caregiving by way of personal experience. After her father was diagnosed with ALS, Ice had to balance her college studies with helping to care for him. “My mother and I were forced into an awkward partnership to keep round-the-clock care going as I tried to continue my studies and she tried to keep her job,” she says. In the wake of this period, and without ever precisely intending to, Ice has spent much of her academic career trying to understand the structural and cultural conditions that shaped her own experience.
What Ice documents in her research on caregivers is a process of accumulation that begins almost imperceptibly and then compounds. Caregivers learn to navigate a labyrinth of specialized skills, including communicating across hospitals, clinics, pharmacies, and insurance offices, while simultaneously developing an intimate knowledge of the person in their care — knowing exactly what “normal” looks like amidst daily fluctuating symptoms. The experience can be similar to that of first-time parents. There’s the same feeling of cramming swaths of new information into day-to-day routines while simultaneously creating intricate mental maps of another person’s medical, emotional, and logistical needs.
In fleshing out the concept of singular caregiving, one of Ice’s priorities is to resist framing caregiving purely as labor involving a set of tasks to be counted and redistributed. In a labor framework, the problem is that there is too much work and too few people. Ice argues that eldercare is something more: It’s a role that balks at redistribution. And roles, in the sociological sense, constitute new identities. As a caregiver, you develop new relationships with, among others, the discharge nurse, the physical therapist, and the pharmacist. You learn (fast) how to talk to a hospital, and you acquire new scripts around navigating a complex system that was not built with you in mind. Those skills are not easily redistributed, and you might not recognize you’ve taken them on until you’re struggling to disentangle yourself from the complex ecosystem of responsibilities.
In recent years, the phrases “mental load” and “invisible labor” have entered common usage to describe a related idea in marriages and parenting. These terms have become shorthand for the invisible role of holding the full picture of another person’s being, or a whole family’s ecosystem, in one’s head at all times. Ice’s research demonstrates that caregivers of aging adults carry a similar load, but unlike parents or spouses, they don’t have a cultural vocabulary for it. There is no equivalent shorthand in the eldercare space and not as much of a publicly recognized or shared identity. How do you describe that sense of isolation to someone who
hasn’t experienced it?
Take the example of Amy, a composite figure drawn from Ice’s interviews and others like them. In the hours after her husband Drew has a stroke, Amy is suddenly dropped into performing two jobs simultaneously. By the time the couple arrives at the emergency room, she’s both wife and case manager. As the couple encounters a cascade of specialists and rehabilitation therapists, Amy becomes the connective thread, absorbing information on mobility techniques, training in feeding tube protocols, and watching therapists guide patients through their daily exercises. Amy has become her husband’s “caregiver,” but that term makes the role sound tender while eliding the fact that it’s also a job.
The healthcare system has little incentive to account for the relational complexities of what happens once a patient goes home, Ice says. “Of course they are going to make sure that patients are discharged to a safe home,” she explains, “but they aren’t — and they can’t be — putting too much effort into preparing caregivers for the burdens they might take on after discharge.” So the caregiver absorbs it all, by default and by necessity.
“As the primary caregiver accumulates knowledge, their role becomes institutionalized,” Ice explains. “The repeated engagement with health care actors, electronic health records, and bureaucracies creates new relationships and caregiving network organizations.” Appointments beget information that begets more appointments. Caregivers quit jobs, move in, offload other responsibilities; with each step, the role tightens around them. Over time, they become the only person who can be the most informed person in the room. There’s simply too much information to share; the mental load is heavy, but it can’t effectively be split.
Ice points to one of her research participants as a living example of how quickly this process can set in even in cases where there’s no close family relationship to tie a caregiver and patient together. When a friend of this participant had a stroke, Ice says, he had no spouse, no children, and no family nearby. The participant was the only person who showed up to the hospital, and once she did, she found herself locked into a role she hadn’t meant to take on.
“She was the only one at the hospital for three days,” says Ice. “She learned everything at intake, and then all of a sudden, her friend’s brother is asking her to be the durable power of attorney. She says yes because she feels guilty not saying yes in a crisis. And when her friend goes home, she’s the only one who knows how to do anything because she was the one in the hospital seeing the nurses.”
In one reading, the friend showing up is a sign that care networks are much more expansive than might be expected. Much of the public debate around eldercare assumes a crisis of supply: that there simply aren’t enough kin available to take on the labor. Even if there were, however, Ice’s research points to a reality that shows that more hands available doesn’t mean less work for the primary caregiver. “Whether a person has one close network member or 10, a singular caregiver might still be the outcome,” Ice says.
To return to the example of Amy and Drew: Before Drew’s stroke, he and Amy probably talked around the concrete realities of getting older and needing care. They likely half-casually tried to tease their adult children on phone calls: “I have to be careful what I say, because you’ll be taking care of me someday, right?” But in their hearts, Amy and Drew each harbored ideas of aging in place, of a scenario where they could stay in their home filled with reminders of themselves and their lives. They expected to get slower, sure, but they planned to do it together, on their own terms. The first stroke made those terms impossible, and what came after was an effort to preserve a version of them. That preservation comes at a cost, namely Amy’s time and energy. Caregiving can upset expectations, but, for caregivers, it’s also a moment when their individual identity is upended.
Instead of making the caregiver or the recipient a supporting player in the other’s narrative, Ice’s scholarship holds space for both. In one interview, Ice asked a woman caring for her adult daughter whether she talked to anyone about the work. “No,” the woman said. “I don’t talk to people about it because I want to protect my daughter.” But that silence, while protective, also costs the caregiver meaningful support. This daughter, unlike an infant in a parenting space, has her own claims on how her story is told. So the caregiver minimizes her own experience, and the language that might name it gets lost.
Ice is not arguing that the answer to the problems of singular caregiving is an equal distribution of labor across multiple people. The research shows that paid help or networked care can only do so much, and they do not eliminate the singular caregiver role. What she argues for is a clearer accounting of which aspects of singular caregiving are indivisible and, to a certain extent, inevitable, and which could and should be reorganized and shared. Some of what lands on caregivers has been an act of quiet transfer from the healthcare system to untrained family members. Ice considers whether some of that transfer could be reversed.
Caregivers of aging adults in Ice’s research describe a full-time role with no name that fits, no paycheck, and no script for what they’re supposed to feel — whether this is a burden, a gift, or a duty. By providing language for the experience, Ice aims to name the structure clearly enough that those living inside it can recognize it as structure rather than as personal failing. Naming the confusion about whether caregivers are allowed to find their roles hard, and beautiful, and impossible can help them process and continue to move through the experience. This language also gives families something concrete to discuss, pressure points to identify, experiences to compare with one another. It doesn’t, ultimately, redistribute labor, but it can make it legible to someone else.