As millions “age in place,” millions more must figure out how to provide their loved ones with increasingly complex care.

Vox – August 2021

Author:  Anne Helen Petersen

When Laura sent me an email in early August, the first thing she did was apologize. “Please excuse how inelegant and disjointed this will be,” she wrote. “It matches my brain after being a caregiver since 2013.”

In 2013, Laura was several decades into a career as a marketing consultant. Her work was rewarding and challenging; she felt like she got to be creative every day and was never bored. She had gone freelance in the early 2000s and reveled in the freedom of being her own boss. Then her 78-year-old mom began experiencing severe back pain. She was scheduled for surgery, but the symptoms only worsened after the procedure.

She was soon rushed back to the hospital following the collapse of her spinal cord. After emergency surgery, her pain lessened, at least somewhat, but then Laura was left to deal with her mom’s quickly accelerating dementia. “She went from normal cognition to thinking it was her wedding day and that I was her mother,” Laura told me. “She didn’t know how to walk, and didn’t remember what had happened to her.”

According to elder care experts, Laura’s description of what happened to her mom is pretty common. As someone ages, their health appears to gradually deteriorate in a way that doesn’t seem alarming. Most of the time, though, they’re inching toward a cliff — and when they fall off, they find themselves on another health cliff, and another, and another. With each cliff, it gets more difficult for a family member to catch them.

Some older adults have diligently prepared for their future. They purchased long-term care insurance when it was still affordable, then paid the premiums each month, even as they continued to rise. This is not the norm. Many adults have no plan at all, or assume that Medicare, which currently kicks in at age 65, will cover their health costs. Medicare, however, doesn’t cover the long-term daily care — whether in the home or in a full-time nursing facility — that millions of aging Americans require.

For that, you either need to pay out of pocket (the median yearly cost of in-home care with a home health aide in 2020 was $54,912, and the median cost for a private room in a nursing home was $105,850) or have less than $2,000 in assets so that you can qualify for Medicaid, which provides health care, including home health care, for more than 80 million low-income Americans. Even if you qualify, the waiting list for home care assistance for those with Medicaid tops 800,000 people and has an average wait time of more than three years.

That’s how millions of Americans find themselves in situations like Laura’s. A nursing home is too expensive; or, because of ongoing staffing shortages, there aren’t even open beds in the area. Over the past year and a half, many have also deemed them too risky because of Covid-19 concerns.

In-home care seems more complicated, but it’s almost always what the care recipient wants, especially if it means the ability to stay in their own home. So the family decides to make it work, without a real understanding of the often-invisible costs that will quickly begin to accumulate.

“My mother and I had always been close, as much friends as mother and daughter,” Laura told me. Laura thought, with the freedoms of her job, she could manage care for her mother at her parents’ home, even if it meant slightly decreasing the number of clients she took on. “Looking back, I realize how naive I was,” she said. “My clients dropped away, some after more than 20 years of working together. You can’t care for someone with such high needs and still manage to put in a day of work.”

“IT’S A WEIRD SORT OF AMNESIA I’M LEFT WITH. I THINK THIS IS PTSD.”

In the years that followed, Laura’s mother broke her hip. Her dementia worsened. Her father was also diagnosed with dementia, and would occasionally hit people. Laura attempted to go along with their realities to avoid agitation, which made her feel like she was living in “this weird, make-believe version” of the world. Without any outside help, she felt herself receding into an automated routine of changing diapers, bathing, washing bedding, cooking meals. The feeling was not dissimilar from caring for a baby, only babies get older and their care gets easier. The opposite is true for elder care.

“Watching people you love suffering is debilitating, but you have to keep going,” Laura said. “That’s just another thing you tamp down. You have to stuff away anything you’re feeling because there isn’t time for that. You have too much to do.” Her parents’ medical needs kept getting more intense, but as is the case with so many elders “aging in place” — living in their own homes, which AARP found the vast majority of older adults prefer — or moving in with a family member, they were too much for Laura but too little to justify (at least to insurers, or Medicare) a full-time nursing facility.

Laura’s mother died last year. Her father died four months ago, but not before developing kidney cancer that eventually did necessitate nursing home care. Once there, he became so agitated and combative that the staff required Laura to sleep in the room — in the middle of an active Covid-19 outbreak — just to keep an eye on him.

After he died, in what Laura described as a “crazy mess of death,” Laura found herself with a decimated retirement account, no other savings, and no income. “I’m 63, and need to find a job,” she said. “But who wants a 63-year-old? I can’t even manage to put together a decent résumé. I’ve gone from a strong, confident woman who could handle anything to someone who can barely function.

Over the past eight years, Laura lost much of her support system; she couldn’t go anywhere, couldn’t socialize, couldn’t maintain friendships. She can’t remember what her family used to be like and keeps replaying scenes in her mind, wondering whether she could have provided better care. “It’s a weird sort of amnesia I’m left with,” she said. “I think this is PTSD.”

Depending on your own experience with elder care, Laura’s case might sound extreme. But it isn’t, not really. It’s just that most of this care work — both paid and unpaid — remains invisible. According to the most recent data from the AARP, an estimated 41.8 million people, or 16.8 percent of the population, currently provides care for an adult over 50. That’s up from 34.2 million (14.3 percent) in 2015.

Of those caregivers, 28 percent have stopped saving, 23 percent have taken on more debt, 22 percent have used up their personal short-term savings, and 11 percent reported being unable to cover basic needs, including food. The average age of someone providing care for an adult is 49, but 23 percent are millennials and 6 percent are Gen Z. Sixty-one percent are women, and 40 percent provide that care within their own homes, up from 34 percent in 2015.

A lot of these caregivers are really, really struggling. What’s required of them is more complex and time-consuming than just 10 years ago, as caregivers deal with overlapping diagnoses related to physical health, mental health, and memory loss as the elderly live longer. The work is much more than just clearing out the guest room or setting another place at the dinner table.

Depending on the health of the care recipient, it’s monitoring medication, preparing special meals, changing diapers, and bathing, plus figuring out finances, providing transportation to and from medical appointments, and more.

But only three in 10 have additional paid help, and 27 percent struggle to hire affordable care in their area. One in four caregivers find it difficult to take care of their own health, and the same percentage report that their health has deteriorated because of caregiving.

“SO MUCH OF THE LABOR — AND STRUGGLE — ASSOCIATED WITH CAREGIVING GOES UNNOTICED, UNAPPRECIATED, AND UNDERDISCUSSED“

So much of the labor — and struggle — associated with caregiving goes unnoticed, unappreciated, and under-discussed. There’s a whole host of reasons for that, mostly the fact that family caregiving is largely performed by women in the home and thus discounted as labor; when it is paid, it’s almost entirely performed by women of color, particularly immigrant women, and socially devalued. Then there’s the fact that most Americans are also terrified of death and the dying process and horrible at talking openly with others about the realities of aging.

As Laura’s story demonstrates, that sustained invisibility has cascading consequences on not only the caregiver’s mental health but also their capacity to save for their own eventual care needs. Paid caregivers’ situations are different but no less extreme. In most states, they have close to no labor protections for incredibly physically taxing work. Most barely earn enough to provide for their own families, let alone save for retirement.

Since the difficulty of this care remains largely imperceptible to all save those who provide it, there have been few attempts, governmental or otherwise, to make it better, easier, or less of a life-swallowing burden. Right now, there are resources for the poor (who go on Medicaid, the services for which have become harder and harder to access and arrange) and resources for the rich (who can pay for Cadillac versions of care, including consultants to navigate the process).

For everyone in between, as Caroline Pearson, senior vice president at the University of Chicago’s NORC (formerly the National Opinion Research Center), put it to me, “There is no system at all.” There are just individual families and the caregivers within them carving out their own paths as best as possible — and, in many cases, significantly denting their savings and earning power, making their already precarious footing in the middle class all the more so.

How do we make this labor visible enough that we can begin to make it navigable and to prevent, or at least significantly alleviate, millions of care situations like Laura’s? Our current eldercare reality has everything to do with who’s done this labor in the past, paired with an enduring unwillingness to update social policy to match seismic societal shifts. There’s a way to value this work. The first step is seeing it not just as valuable labor but as labor in the first place.

When academics and analysts put together surveys to try and figure out just how many hours people in the United States spend providing care, they have to be clever. “You and I, in our conversation, we’re using this word ‘caregiver,’” Christian Weller, an economist who studies retirement, told me.

“But the people who design the surveys, they have to be very careful not to use that word.” According to Weller, many people, particularly those caring for family members, will say, “Oh, I’m just spending time with my mom” — they just happen to feed, bathe, and supervise all their daily needs while doing so.

The people providing this care don’t think of themselves as caregivers, for many of the same reasons mothers who don’t work outside the home don’t think of themselves as “working moms”: The labor they do is expected, part of their familial role. It’s not labor, or at least not the sort of labor that would earn its own title like “caregiver.”

Caregiving is work, even if our society has historically concealed that work. For much of the country’s history, the question of who provided long-term care — for young children, for those with disabilities, and for older people — was simple. Women did it for free in the home.

The vast majority of men worked outside the home, earning the money that would allow the household to run, and then the women ran it: cooking, cleaning, educating, supervising, bathing, planning, organizing, and just generally doing the labor known as care work. While men’s work outside the home was valorized, women’s work was naturalized: It wasn’t work, it was just what women did.

This belief is part of the larger ideology of “family responsibility,” which has become endemic in American society, where the responsibility of caring for dependents is considered, first and foremost, the provenance of the family. You see it in enduring rhetoric about why a mother’s care is always best for children; you see it in the guilt that accumulates around women who chose not to (or cannot) provide that care. As sociologist Sandra R. Levitsky writes in Caring for Our Own, within this framework, “Caring for family members is understood as a natural or inherent moral obligation, superior to any other form of care.”

You might read that and think, “Yes, that is true, that is how the human family works.” As Levitsky points out, our not-so-distant past suggests otherwise. Scholars have found that during the 18th and 19th centuries, harsh economic conditions meant many family relations were contingent on some sort of a mutual economic benefit: Children were “worth” the cost to feed them because of the labor (or income) they would eventually provide for the family, whether in the fields or in the factories.

The same was true even outside of poor families. In his work on the dynamics of inheritance in the 19th and 20th centuries, historian Hendrik Hartog found that inheritance was often dangled over family members as a means of coercing care.

It’s only recently that we’ve settled on the understanding that care for elders is natural, moral, and ideal, even when the people providing this care are suffering or lacking the skills to provide the quality of care the recipient requires, or both. Crucially, by locating responsibility for care squarely on the family unit, it also continues to limit or excuse greater society — which is to say, the government — from the responsibility of providing care to the most vulnerable members of society.

Our belief that the family is always the best and preferred care provider makes it much harder to advocate for the sort of larger, taxpayer-funded systems that would make all care, regardless of whether it’s provided by a family member, far easier.

There are other consequences to this naturalization of family responsibility. When labor is continually framed as something done out of love or instinct, it loses its connotation as labor and, by extension, its value. When women (and white middle-class women in particular) began moving into the workforce en masse in the second half of the 20th century, they didn’t quit their domestic work. They just did two jobs, one layered on top of the other; they would put in a full day in a traditional workplace for pay, then went home and kept working, unpaid.

Many women could only juggle these two separate jobs with the help of other women, both paid and unpaid. Poor working women had been doing this for some time, relying on “kith and kin” for child care in particular. Some middle-class women increasingly began to do the same, relying on friends but mostly family, while some began paying other women to do the work.

This domestic labor, whether in the form of child-rearing, laundering, cleaning, or cooking, was essential, but because it had been so thoroughly normalized as unpaid work, it was also easy to normalize incredibly low wages for those who do it, even if that person had no relation to the family.

This devaluation of domestic labor has been racialized from the start. The rhetoric of a “natural inclination” toward a certain type of work was used to justify slave labor while conveniently eliding the fact that the entire economy of the South would collapse without it. Instead of rebuilding a new economy after the Civil War, the South simply devalued the labor previously performed by enslaved people, whether in the fields or within the home.

This standard was codified by law and held in place over the course of the early 20th century by Southern Democrats who insisted that agricultural and domestic workers be exempt from the otherwise sweeping labor protections of the New Deal era.

“WHEN LABOR IS CONTINUALLY FRAMED AS SOMETHING DONE OUT OF LOVE OR INSTINCT, IT LOSES ITS CONNOTATION AS LABOR AND, BY EXTENSION, ITS VALUE“

These two currents of labor devaluation — of women’s work and of racialized work — converge in caregiving. The systemic undervaluing of this labor affects those providing unpaid and paid care differently, but the impacts are interlocking. In Forced to Care: Coercion and Caregiving in America, Evelyn Nakano Glenn argues, “By virtue of its location in the home, caring work, whether paid or unpaid, is treated as though it is governed by the altruism and status obligations,” meaning the obligation to care for someone because of your relationship to them (daughter, son, sibling).

“As a result,” Nakano Glenn continues, “paid domestic workers suffer various forms of exclusion from benefits and rights accorded other paid workers. Instead, like family members performing unpaid care, they are treated as dependents rather than true workers.”

In both child and elder care, this “social organization of care,” as Nakano Glenn calls it, has remained unaddressed for decades, societally “tolerable” only because the people bearing the greatest burden have been women, particularly women of color. Even as more and more women have entered the workforce each decade, and more and more elders require more and more complex care, the governmental understanding of who should provide that care has remained stubbornly rooted in the ideology of family responsibility.

In practice, that means continually undervaluing those who provide paid care, while also making it incredibly difficult for family members in most states to receive Medicaid payment or reimbursement for their labor as a part- or full-time caregiver.

The continued devaluation of caregiving means that turnover for paid caregivers is high. As soon as someone can find a job that pays better, offers medical benefits or worker’s comp, or puts less physical strain on the body, they quit. In many states, particularly those where care workers haven’t been able to unionize and bargain for protections and better pay, there’s an ongoing labor shortage that only gets worse every year.

This shortage has direct effects on the family members supervising that care. The lack of affordable or even available assistance means more “coerced” caregiving by family members who feel they have no other choice; according to the AARP, this accounted for 53 percent of caregivers in 2020.

What’s more, finding replacement caregivers and then coordinating their hours is one of the most mentally taxing components of familial caregiving, a task that only gets harder when labor is in short supply. When you make a job a bad job, you create more labor for the people who rely on assistance from that job.

The result is caregiver burnout, poor care, and poor caregivers. As Kate Washington writes in Already Toast: Caregiving and Burnout in America, “Burnout kills empathy and makes worse caregivers of all of us who suffer from it.” For paid caregivers, burnout arrives for the same reasons it arrives in any low-paying, highly demanding field: They’re simply not paid enough.

The combination of low, stagnant wages and inconsistent scheduling made for a median income of $27,080 as of May 2020, and that figure varies wildly from state to state. (In Houston, for example, the annual mean wage was $21,120; in Seattle, $33,770.)

This was exacerbated during the pandemic, when the narrative of “aging in place” at all costs became even more forceful. Paid caregivers in 21 states were offered some form of hazard pay or pay increase, but those workers were the exception, not the rule. Even as demand has skyrocketed, pay in most states has remained stubbornly low, and because home health workers weren’t designated as “essential,” they didn’t have the same access to regular testing, PPE, or vaccines as other health care employees.

“JUST AS WITH SO MANY PARENTS OPERATING WITHOUT SOCIETAL SUPPORT, LIFE BECOMES A MATTER OF SHEER ENDURANCE“

For unpaid caregivers, burnout comes from the combination of performing physically and mentally exhausting work, coordinating care and medications, managing their own jobs and families, and navigating the bureaucracies of care and finance. Compassion fatigue and secondary traumatic stress, with symptoms ranging from depression to insomnia to substance abuse, are widespread and largely undiagnosed.

Just as with so many parents who operate without societal support, life becomes a matter of sheer endurance. But at some point, as care needs become even more acute, no amount of endurance or will or grit can make the situation tenable. There are no solutions and no real relief, other than eventual death, shaded with the peculiar mix of relief and regret.

Unpaid caregivers told me that part of their frustration and exhaustion stems from their sustained invisibility. Liz O’Donnell, author of Working Daughter: A Guide to Caring for Your Aging Parents While Making a Living, said that in the Facebook group she runs for unpaid caregivers, one recurrent frustration is that the press is filled with articles about how hard it is to parent during Covid-19 — which is important — but there is very, very little about the challenges of caring for adults in isolation, especially while trying to work.

“I’m lucky that I have teens who can handle their own Zoom calls,” O’Donnell said. “But it was also really, really hard for people who have a parent with dementia who didn’t understand that you were on a Zoom call.”

We don’t know how to talk about the challenges of eldercare with each other, especially at work. When O’Donnell was still trying to juggle care for her parents, who have since died, and a full-time job, she found there was no repertoire, no familiarity, no way for her coworkers to understand.

You don’t just come into work one day and declare, “I provide eldercare now!” Unlike with, say, the birth of a child, there’s no office-wide email, no celebration, nothing that visibly changes, no employee resource group — no resources, period.

Just incredible stress, and the feeling, particularly among women caregivers, that you have no other option but to keep juggling care and work responsibilities.

“You see a lot of statistics about the 65 percent of caregivers who make some change at work, or the $300,000 in total lost wages and benefits for women, or people who take time off or switch to a less demanding job or quit altogether,” O’Donnell said. “But there’s also a lot of just hanging on. Women know how dangerous it is to leave the workforce, and we know it’s not something that many of us can afford.

The average family caregiver is a woman in her late 40s and early 50s. If that woman takes her foot off the gas pedal in her career, does she ever get back in?” The care itself is exhausting, O’Donnell said, but the additional anguish over what the care has taken from your life and from your future? That’s debilitating.

If you haven’t faced figuring out care for yourself or a loved one, you might think this isn’t your problem. It likely will be at some point, but even if it isn’t, it still matters. When one pillar of society is broken, the rest of the pillars are asked to bear even more weight. Some calculations are hard to parse, but some are straightforward: If your mom stops working to take care of her parents and drains her savings to do so, that will affect you when she needs care.

The promise of automation won’t fix the labor shortfall. Increasing immigration quotas might help, but the job itself is still a bad one with high turnover. Everyone’s miserable, and nothing’s even close to optimal — not for elders, and certainly not for the ones providing care.

The current situation is a prime example of what political scientist Jacob Hacker calls “policy drift,” where the needs of a society have changed dramatically but the social policy created to address those needs remains mired in a previous reality.

In this case, a reality decades in the past, when far less of the population was aging, when the care needs were far less complex, and when far fewer women worked outside the home. That’s not to say that the situation was optimal in that previous reality, but now it’s falling on the shoulders of millions of paid and unpaid caregivers.

So how do we correct that drift? The tech industry has recently realized that the family caregiver market is massive and hugely underserved, and various startups are trying to make certain aspects of caregiving less unnecessarily burdensome. Carefull, headed by former consultant Todd Rovak, aims to alleviate the massive stress of elder financial management. “Right now, people are essentially becoming the CFO for their parents,” Rovak told me. “They don’t have the skills for it, and the system fights them all the way. It’s not built for them to do it with any efficiency.”

Most caregivers get their parents’ passwords to help with smaller tech issues such as paying a bill online, only to find themselves dealing with repeated commemorative coin purchases, fraud, identity theft, and political donations that unwittingly turned into recurring ones.

Carefull is sort of like a smarter Mint.com, with alerts for behaviors that are common among aging adults: double-paid bills, missed payments, orders to a company in the middle of Canada they’ve never purchased from before. (Erratic or odd bank account behaviors can signal cognitive decline years before an official diagnosis.)

This sort of tool is useful when elders still live autonomously, and in other ways when they need a full-on financial caregiver; it also makes it far easier to distribute the labor among multiple family members. Lessening one component of the psychological and time burden of care is important, as is protecting against the cascading financial effects of fraud on credit scores within the family (one family member attempts to correct another’s debt, then finds themselves deeper in debt or late on payments, and so on).

Tools like Carefull create a system where there was none and then make it easier to navigate, ultimately clarifying an unnecessarily convoluted corner of care labor.

A handful of employers are trying to fill gaps, too, drafting policies that acknowledge and accommodate eldercare responsibilities. The tech company Hyperscience, for example, recently implemented a new eldercare benefit that provides up to $36,000 a year per dependent for elder care, plus access to a “concierge” service to help coordinate care. It’s a great perk — for the 300 or so people who work at Hyperscience. It doesn’t actually address the larger quagmire, and no app or private benefit will. The primary intervention has to happen at the state and federal levels.

The most straightforward fix, according to Caroline Pearson, the eldercare expert from NORC, is to invest federal dollars in creating an actually useful program for those navigating elder care, including far more robust websites with discernible care options for each state, as well as increased funding and footprint for local Area Agencies on Aging.

That’s the stuff that’s easy to wedge into any federal budget. Much harder — but more important, and what we should start advocating for — is a comprehensive program for long-term care, which starts with making long-term care insurance universal, mandatory, and at least partially funded through a payroll tax. (At this point, there are funds earmarked for elder care in the budget reconciliation bill, but the breakdown of those funds is incredibly unclear.)

At the same time, we need to make home health care a “good American job,” with the corresponding ability to unionize and bargain for worker’s comp, health benefits, and higher pay — which will then attract more workers, reduce turnover, and reduce subsequent stress on family caregivers. For people who do still want to provide familial care, more states should remove the restrictions on who can be compensated for it, thus preventing caregivers from draining their own savings entirely in the process.

Finally, there are ways to make care outside the home an actually affordable option. It doesn’t mean reducing the quality of care but requires reimagining what nursing home care looks like, particularly in terms of size, and addressing longstanding staffing shortages by making those jobs desirable as well.

Does this sound expensive? Like a cost, you’d rather not pay via your individual taxes? Or something that will never benefit you personally because you’ll figure out how to take care of your parents and your kids will figure out how to take care of you? Like you can just go get a job at a place like Hyperscience and start using an app like Carefull and have everything figured out just fine?

“IN OUR LIFETIMES, AT LEAST, IT’S A PROBLEM THAT’S JUST GOING TO GET WORSE AND WORSE, MUCH LIKE THE HEALTH OF THE PEOPLE WHO NEED CARE“

First off, you’re almost certainly wrong, and second, that attitude of personal responsibility is what led us here in the first place. This isn’t a problem we age out of in the way we age out of being the parent of a small child. In our lifetimes, at least, it’s a problem that’s just going to get worse and worse, much like the health of the people who need care. You might remember how, a few branches back in your family tree, people moved in with their family members in their later years and everything worked out fine.

Or, more recently, a relative survived on their pension until the last year of their lives was able to cover private at-home care, and hardly even touched their savings. Today, those stories are effectively fairy tales — stories we tell ourselves to avoid confronting reality. Your grandparents’ reality, your great-grandparents’ reality, it is not your reality.

As a society, we are living so much longer, and the diseases and conditions we live with require so much more: more care, more medicine, more vigilance, more maintenance. This is why piecemeal solutions are laughably insufficient. We need to actually create a viable system, one that doesn’t ask people to be unspeakably wealthy, furtively siphon off their assets, or wait for years for affordable care. Then we need to make the people working within that system visible and their labor, in turn, valuable.

That requires legislative buy-in and, perhaps even more difficult, an ideological shift in our conception of what makes labor essential and a rejection of the belief that we don’t need social safety nets in this country because we have women. None of that work can start if we pretend our loved ones won’t fall off a cliff and suddenly need our whole selves to cushion the fall, if they haven’t already.

Talking to dozens of adult caregivers, I heard variations on the same theme over and over again: It’s brutal, it’s tearing my family apart, it makes me resent everyone, including the people for whom I’m providing care. The suffering is not new. The crisis has just further expanded within the middle class and the population at large, gradually making it less and less ignorable.

“We can’t have a strong economy if we have millions of people working as full-time caregivers and making so little that they are still living in poverty,” Secretary of Commerce Gina Raimondo recently told the New York Times. “We can’t have a strong economy when we have millions of other people dropping out of the workforce to take care of elderly loved ones.”

Right now, several experts told me, the public alarm around the state of elder care is about where it was with child care 10, 15 years ago. We didn’t act on the alarm bells when it came to child care, and now the system is in a pandemic-accelerated crisis, with rippling effects across the economy.

The question, then, is whether we want to wait for the 10, 15 years for that implosion, right as even more Gen X-ers, millennials, and older Gen Z-ers age into caregiving roles and, shortly thereafter, need their own care. Or do we want to address the problem now, before it risks collapsing us, and our families, entirely?