Caring for aging parents and sick spouses is keeping millions of Americans out of the workforce

Courtney Russell loved her job managing a Charleston, S.C., candy store. But early in the pandemic when her husband’s cancer returned, she felt she had only one choice: to quit.

Her husband, Doug Curtin, needed a bone-marrow transplant and months of chemotherapy. But hiring a home nurse, so she could keep working, seemed risky with rising coronavirus rates in early 2020.

Two years later, the couple is getting by financially with help from family. Curtin still needs help showering, walking and standing, and Russell says it could be years before she considers looking for work again.

“I thrived in my job and to be honest, I don’t do well when I’m not working,” said Russell, 42, who spent nearly two decades in retail after working her way up from a part-time seasonal hire to store manager. “But ultimately his health comes first.”

Even as the job market rapidly approaches the levels last seen before the coronavirus pandemic, a lack of affordable care for older and disabled adults is keeping many out of the workforce. At least 6.6 million people who weren’t working in early March said it was because they were caring for someone else, according the most recent Household Pulse Survey from the Census Bureau. Whether - and when - they return to work will play a role in the continued recovery and could reshape the post-covid labor force.

For all the attention on parents - and mothers in particular - who stopped working to care for children during the pandemic, four times as many people are out of the workforce, caring for spouses, siblings, aging parents and grandchildren, according to the Federal Reserve’s latest Monetary Policy Report.

Caregiving is the second-largest factor keeping people out of work, behind early retirements, at a time when job openings continue to outnumber potential workers. That mismatch is contributing to labor shortages around the country and playing a role in overall inflation. Roughly one-quarter of the workers missing from pre-pandemic levels are on the sidelines for caregiving reasons, according to the report. Overall, the economy is still short 1.6 million workers, two-thirds of them women, from early 2020.

“The pandemic has amplified a problem that’s been endemic in the labor force for a long time, which is that caregiving takes a very significant toll on both the amount of hours someone can work and the jobs they can take,” said Joseph Fuller, a professor at Harvard Business School whose research focuses on the future of work. “Covid was so dangerous for seniors that it caused people - unfortunately mostly women - to reconsider work-life balance in ways we haven’t seen before.”

In interviews with more than a dozen workers who quit their jobs to care for family members, nearly all said they weren’t considering a return to work anytime soon. The lack of home-care options, combined with the risk of in-person work, made it just about impossible for them to go back, they said. Several described taking on additional caregiving roles during the pandemic - looking after elderly parents, for example, while also caring for grandchildren - which made a return to work even less likely.

Early in the pandemic, Lesley Williams, 61, quit her $19-an-hour bookkeeping job at a Seattle lumber company to watch her young grandchildren when schools shut down. Now she’s also caring for her 81-year-old mother-in-law, who recently moved in from senior housing.

“I had a great job with benefits, but as a family we had to pull together,” said Williams, who worked as a bookkeeper for nearly five years after a career in child care. “I had reservations about giving up work but it’s turned out to be really great. I’m perfectly happy doing this.”

It’s unclear when, if ever, she might return to work. By the time her grandchildren - the youngest is 8 months - start kindergarten, she’ll be of retirement age.

The relationship between caregiving and work tends to be circular: People who are already out of work - as many were early in the pandemic - tend to take on caregiving roles. And once they do, they’re less likely to reenter the workforce, said Yulya Truskinovsky, an economics professor at Wayne State University who studies labor, aging and the economics of caregiving.

And while employers are increasingly more accommodating of child-care needs - offering parents flexible schedules, in some cases, or on-site day care - that hasn’t been the case for adult care, which often becomes more labor-intensive over time. In most cases, Truskinovsky said, child care is tough early on but becomes more manageable as children gain independence and go to school. With older adults, the opposite tends to be true.

“Maybe [adults] can live independently at first, but then they have a fall and suddenly the picture changes. It’s much more unpredictable,” she said. “Once you start caregiving for an adult, you’re probably not going to stop until your loved one moves into a nursing home or dies.”

Brooke Day quit her job as a concierge at a Washington, D.C., apartment building in October, shortly after her 60-year-old mother suffered a stroke that took away her ability to do even simple things without help. It’s the first time that Day, 38, has been out of work for more than a few weeks, and she says she has no idea when she might return.

“She can’t do anything unassisted, not even eat,” said Day, who receives about $280 a day from Medicaid to care for her mother. “Until my mother leaves this earth, I will be out of the workforce.”

The pandemic added an extra layer of challenges to the already tenuous arrangements many families had in place to care for aging parents, sick spouses and disabled siblings. As nursing homes went into shutdowns or weathered outbreaks, many families took elderly parents home to care for themselves. At the same time, a growing shortage of workers - both in nursing homes and home-care settings - has made it more difficult to secure outside help.

Beyond those who have already quit their jobs, many more are at risk of leaving the workforce in the coming years if caregiving needs go unaddressed. One in 5 workers are balancing paid work with part-time care duties, putting them at heightened risk of resigning, according to the Rosalynn Carter Institute for Caregivers.

“It’s the biggest driver of inequality that nobody talks about: The caregiving burden falls almost completely on the shoulders of women,” said Ai-jen Poo, co-founder and executive director of the National Domestic Workers Alliance, a nonprofit advocacy group. “We have massive demand for care and the only people doing the work are women, whether they’re trying to juggle it with paid work or are being paid poverty wages to help with care.”

The influx of family caregiving needs during the pandemic is directly linked to a shortage of care workers, who often work long and stressful hours for little pay, she said. Even as many other sectors have rapidly added jobs, hiring at nursing homes and residential care facilities fell in March, according to the latest Labor Department data. In all, care facilities have 405,500 fewer employees than they did before the pandemic - about a 12 percent drop - accounting for about one-quarter of the country’s worker shortfall.

“Labor shortages are impacting these industries, making care services extremely expensive,” Daniel Zhao, senior economist at employment website Glassdoor, said. “Caregiving challenges are particularly acute because of the pandemic.”

More Americans are in need of care, both because of a fast-aging population and medical needs exacerbated by the pandemic, when many routine screenings and treatments were delayed. Older Americans, including the baby boomer generation, are hitting retirement age at a rate of 10,000 people per day. In the next 20 years, the number of Americans older than 65 will more than double, and those over 85 will quadruple, said Poo of the National Domestic Workers Alliance.

Amanda McGee, 37, lives near Pensacola, Fla., and used up 480 hours of medical leave at her tech job last year to care for herself and her parents before being fired for being unreliable.

McGee’s father has metastatic lung cancer, though he does not qualify for veterans’ care stipends, and her mother has movement issues related to a degenerative spine condition. As a result, McGee says she spends much of her time driving her parents to and from doctor’s appointments and helping them with meals, laundry and other basics that would make it next to impossible to take on a 9-to-5 job. For now, she’s living on unemployment benefits, though she says it’s been a struggle to get by.

“I’m basically a nursing assistant without certification or a salary,” she said. “I would like to see a lot more support - local and even federal government-wise - for people like me. It kind of feels like we’re left out of the loop without any options.”

President Biden has made caregiving an economic priority. A version of his Build Back Better Act adopted in the House last year contained substantial funding for caregiving, including $150 billion to expand in-home care for adults. That measure remained even as other key provisions were stripped out, although the legislation has stalled in the Senate.

“For millions of families in America, this - this issue - is the most important issue they’re facing,” Biden said last year. “It’s personal . . . Quite frankly, what we found is that this is more popular or as popular as anything else we’re proposing, because the American people understand the need. It’s a matter of dignity and pride for our parents.”

The financial burdens of caregiving are often debilitating for the lowest-income households. Family caregivers say they spend, on average, more than one-quarter of their annual income on caregiving expenses, according to a recent study by AARP. As a result, many caregivers say they’ve had to stop saving money or have taken on additional debt to make ends meet.

John Price, 43, quit his job bagging groceries at a Kansas City, Mo., store last year to care for his 45-year-old wife, who is disabled. They’ve been surviving on her Social Security disability payments of $841 a month. After living in a van for most of the pandemic, they recently upgraded to a camper, though they haven’t had running water since a January freeze disrupted the plumbing system. Without the funds to hire a plumber, the Prices are spending about $50 a month on bottled water.

“What would it take for me to go back to work? It would take being approved for home health care for my wife, and it doesn’t look like that’s going to happen,” said Price, who began working in retail as a teenager. “So instead we’re struggling to keep our heads above water with the little bit of money we have.”

Many caregivers, like Price, said they are stuck navigating a patchwork of state and federal rules that determine who qualifies for home-based care and whether family members can be paid for caregiving. Medicaid, for example, pays family caregivers in some cases, though rules vary by state. (New Jersey, for example, allows spouses to be paid for care work, while most others do not.) Medicare also covers some services for homebound older Americans, like physical therapy, but it doesn’t pay for 24-hour home care or help for people who only need assistance with everyday activities like bathing, dressing and using the bathroom.

In Hazard, Ky., Jennifer Noble applied for a Medicare waiver to become a paid caregiver for her mother, but said she has yet to qualify because she can’t afford the two background checks and CPR certification it requires. She quit her job at a doughnut shop last summer after her mother was diagnosed with breast cancer.

Her mother, who’s 69, is blind and has lost strength in her hands following surgery, so Noble helps her shower, get dressed and take medication. Even simple tasks like opening a can of soda require assistance, she said.

“My mom was a single parent, she raised me alone, and I’m all she’s got,” Noble, 49, said. “So as difficult as it is to watch her declining daily, I’ve got to be there for her.”

Many full-time caregivers don’t return to work, but among those who do, it generally takes about five to seven years, said Truskinovsky of Wayne State University. Even once they’re ready, though, it can be difficult to overcome the gaps in their résumés.

Christy Xandrick didn’t think twice before leaving her job at an office supply company last January when her mother was hospitalized with covid. She moved in with her 86-year-old mother and for months managed her oxygen tank and gave injections to prevent blood clots. When her mother began feeling better in November, Xandrick moved back into her apartment in Burbank, Calif.

But reentering the workforce took longer than the 60-year-old had expected. She applied for about 30 jobs over the past three months and last week beat out 350 applicants for a position as an administrative assistant for an artist. She isn’t sure what she and her siblings will do if her mom’s condition worsens, but for now she’s happy to be working again.

“I was chewing through my savings, trying to figure out if things would fall into place,” she said. “But those are the decisions you have to make when your family needs help.”

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The Washington Post’s Andrew Van Dam contributed to this report.