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 home medical equipment 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 underdiscussed. 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 elder care 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.