For family caregivers, COVID-19 is a mental health crisis in the making

When COVID-19 emerged, Jyl Choate’s family entered into a strict lockdown. They had no choice: Choate, 51, doesn’t have just herself to think of. Beyond caring for her husband and two children, she is responsible for her 87-year-old mother.

“Nobody wants to kill grandma,” said Choate, who lives just outside of Atlanta in Marietta, Georgia. “If any of us get the virus, she will probably get it.”

Choate’s whole life revolves around her mother: 14 hours a day, seven days a week, she makes sure her mom eats, exercises, takes her medications and goes to doctors’ appointments. Even before COVID-19, she stopped working to stay on top of her mother’s needs. Now, the pandemic has strained her family’s finances. Choate is more stressed than ever, sleeping maybe four or five hours a night.

If not for the health crisis, Choate might have hired someone to help care, even just for a few hours every now and then, to alleviate some of the burden. Now the risk of exposure is too great to allow anyone else into the home. Already, her mother has a host of medical conditions, including heart disease, chronic obstructive pulmonary disease, osteoarthritis and macular degeneration.

COVID-19 could be a death sentence. If her mother falls – which happens often – Choate has tried to take care of her at home, doing all she can to keep her from going to the hospital. She recently had to break that rule, taking her mother in for emergency care. But because of the pandemic, she isn’t allowed in to visit her mom and provide the assistance she normally would have.

Those worries have political ramifications for Choate, who wrote in a vote for Jeb Bush in 2016. She is a lifelong Republican in a state looking increasingly competitive for 2020. But she can’t vote for Donald Trump, she said – especially after the president, who recently contracted the coronavirus, told voters “don’t be afraid” of COVID-19.

“We’ve got friends who died, but ‘It’s OK, don’t be scared.’ I’m supposed to tell my 87-year-old mother don’t be scared?” she said. “Don’t turn around and tell me I have nothing to be scared of when I have been locked down with my entire family since March.”

She watched the vice presidential debate between Kamala Harris and Mike Pence with rapt attention. Hanging in the balance, she said, was the decision whether to break with her party and vote for Joe Biden or to just stay home.

Almost 42 million Americans, or 16% of all adults, serve as caregivers for relatives 50 or over. The majority of the people doing this unpaid, labor-intensive work are women, and, on average, they are just shy of 50 themselves, according to data compiled by the AARP. Many have jobs outside the home or are also primary parents for young children.

The issue has gotten little attention on the campaign trail. But it’s at the forefront for those who are preparing to vote while they navigate a pandemic that has taken caregiving – already a grueling task – and rendered it all-consuming, with no promise of relief coming anytime soon.

And though there isn’t good data yet to show how many people have taken on caregiving burdens because of the pandemic, experts agree it’s likely a growing segment of the workforce, as resources like adult day care and assisted-living facilities prove perilous.

“Caregiving is hard to start with. But given isolation, (and the) inability to access services (because of the quarantine), it’s made it even more difficult,” said Scott Beach, who directs survey research at the University of Pittsburgh’s Center for Social and Urban Research, and is currently studying the pandemic’s impact on caregivers. “It’s gone from a tough situation to even worse.”

Already, people who are caring for others appear less likely to attend to their own health. And now, emerging research shows psychological consequences, too. An August report from the Centers for Disease Control and Prevention found that two-thirds of unpaid caregivers for adults had at least one mental health condition, including anxiety, depression and suicidal ideation.

A survey conducted by the University of Pittsburgh found that from April through May family caregivers were more likely to experience anxiety, depression, isolation, fatigue, trouble sleeping and food insecurity – with worse outcomes for women caregivers. Those conditions have likely persisted since May, said Beach, one of the researchers on the survey.

“They are being stretched thin. This is at the same time that those who are working may be seeing cuts in their salaries or compensation,” said Jamila Bookwala, a psychologist and dean of the faculty at Lafayette College. “We’re talking about the brewing of – I don’t want to call it perfect – it’s the imperfect storm. This is going to take a toll for a long, long time.”

Experts say the psychological and financial burdens on caregivers are spotlighting shortcomings in the nation’s family caregiver infrastructure. They’re flaws that already existed, but have taken on outsize importance in the face of a pandemic.

Already, there isn’t a uniform policy for paid family leave, which means people who suddenly must assume caregiving responsibilities often lose income as a result. The Families First Act, which mandated that during the pandemic, companies with fewer than 500 employees provide paid family leave, targeted that benefit for parents who need time for children. It offers no such protection for people taking care of older relatives, or ones who are ill.

Even nuances in the government’s unpaid family leave mandate, which in theory covers all midsize employers, mean that almost half of all workers don’t qualify, a group that largely includes women and especially non-White women.

Paid leave is only part of the equation, though. If someone takes time off to care for a relative, that can result in an eventual demotion at work. Plus, caregiving for someone who is older doesn’t have any definite end-date. Once the paid leave period ends, caregivers still have to find a way to navigate work and their family responsibilities.

Family caregiver groups have also argued that Medicaid – the largest individual insurance payer for long-term care – could be leveraged to better support unpaid caregivers, who may take pay cuts to support relatives and often pay for caregiving supplies out of pocket. Others say Social Security or other tax credits could play a role, too, even in just alleviating the financial burden caregivers face.

“A vulnerability in our system and society has been exposed,” said Lisa Winstel, who heads the Caregiving Action Network, which lobbies on behalf of caregivers.

The burden is acute for 21-year-old Robbie Goldberg, who lives in Framingham, Massachusetts. She’s a part-time student at the local university – all of her classes are online right now – and the sole caregiver for her two elderly parents.

When COVID-19 hit, she had to quit her job at a child care facility to avoid exposing her parents to the virus. Her mom has, among other conditions, chronic bronchitis, asthma, depression and opiate dependence, which all heighten the risk of viral exposure. Her dad is in better health, but at 80, he’s also vulnerable to coronavirus complications.

Goldberg’s responsibilities include preparing all the meals, making sure her parents take their medications and sitting in on all their virtual doctors’ visits. In theory, she said, she would love to hire someone to help just with cooking. In practice, “it feels like the cost and exposure outweigh the benefit.”

It’s taken a toll on her mental health. Already, Goldberg had both attention deficit hyperactivity disorder and chronic anxiety. Since leaving her job, she has lost her health insurance and, in turn, access to therapy. The pandemic has heightened her own anxiety, and she’s had to change her medications, too.

“It’s stressful to realize the outside world is no longer safe for your family,” she said.

Goldberg isn’t excited about either Biden or Trump, though in 2016, she was an avid Hillary Clinton supporter. But she imagines that a Biden administration might be more attentive to caregivers like herself – less because of Biden, she said, and more because his running mate, Sen. Kamala Harris, is also a woman.

“Kamala Harris seems like the kind of person who might understand that there are people who do work at home,” she said. “They’d probably be willing to listen to people.”

Current data tracking mental health among caregivers doesn’t account for race. But systemic factors in terms of whom COVID-19 most affects means Black and Latino people in many ways face a heavier burden.

Proportionally, they are already more likely to be caregivers, said Stipica Mudrazija, a senior research associate at the Urban Institute, who studies aging and long-term care. At the same time, Black women and Latinas, in particular, are more likely to have lost jobs in the pandemic, and – if they’ve held onto work – are less likely to be guaranteed paid leave.

“There are these structural factors making it all that much harder,” Mudrazija said.

Under normal circumstances, Black caregivers, in particular, are more likely to place cultural value on taking care of family, and therefore less likely to show emotional strain from the work, said Peggye Dilworth-Anderson, a professor of health policy and management at the University of North Carolina at Chapel Hill. But the pandemic has taken a disproportionate toll on Black people, which means caregivers are facing heightened worry about their loved ones.

“Black caregivers are experiencing heightened anxiety, difficulties accessing medical care, difficulties having people come in to support them, and they are becoming exhausted,” she said.

Ira Britt, who lives in Greensboro, North Carolina, has spent the past few months caring both for her mother and her husband – her mother has dementia, and her husband just finished chemotherapy. Both are on insulin.

Britt, 69, organizes her whole life around making sure both have meals they can eat and are taking their medicines. Normally, she tries to read or exercise regularly, but there simply isn’t time right now.

She does all the grocery shopping – Britt is at Walmart every Wednesday morning at 7 a.m. sharp when the store is emptier and there’s less risk of exposure – because while her age elevates her own COVID-19 risk, it’s nothing compared to what her family members would face. Britt has seen multiple friends younger than her die of the virus.

She is doing her best to manage her mental health, which has worsened in the past few months. She prays and does all she can to clean any potential source of germs and limit her and her family’s exposure to the outside world.

Still, there’s only so much she can do. Before the pandemic, Britt had never suffered anxiety attacks. She had her first one recently, waking up at 3 a.m., terrified of an impending dentist appointment. What if the dentist’s office wasn’t properly sanitized? And what if she were exposed to the virus and passed it onto her family?

“I wasn’t concerned about myself – it was, ‘Who is going to take care of them, who is going to make sure they are taken care of?’” she said. “I have never experienced anything like that.”

This story was published in partnership with The 19th, a nonprofit, nonpartisan newsroom reporting on gender, politics and policy.

This article originally appeared on USA TODAY: Family caregivers struggle with added mental stress of COVID-19