For months, Courtney Stinson has been too occupied to even think about arranging sit-down family dinners.
That barely begins to describe how overwhelmed the Michigan woman has felt during the pandemic.
She works online as a registered dietician nutritionist and lives near the college town of Ann Arbor. Her 8-year-old son, Nathan, has special needs. With his classes now on Zoom, Courtney and her husband, an engineer, need to step in throughout the day so he can stay on track.
Their 5-year-old daughter, Ellie, suffers from muscular dystrophy, which weakens her more each day. Immobile and dependent on feeding tubes and respiratory treatments, Ellie requires constant help. She qualifies for in-home nursing care under a Medicaid program, but getting that help has been impossible amid the severe nursing shortage of the pandemic.
“It’s so much, it feels impossible,” Stinson said. “And there’s no such thing as catching up. Every time there’s a hurdle, we fall on our faces and never get back on the same path.”
“If I’m caring for one kid, another one’s falling apart. I’m lucky if I get to eat, pee, shower. We haven’t had a sit down family meal in a long time, and didn’t have Thanksgiving…because I didn’t have time to cook anything.”
How strain shows up
In the pandemic, caregivers for elderly or disabled family members or friends have been among the hardest hit when it comes to mental health. A U.S. Centers for Disease Control survey done in June found unpaid caregivers facing “significantly higher odds” of mental stress, including heightening anxiety and depression—far worse than Americans as a whole. The CDC study echoed other research during the pandemic.
A survey in the spring by the University of Pittsburgh’s National Rehabilitation Research and Training Center on Family Support found unpaid caregivers were more likely to be experiencing mental health problems, social isolation, financial hardship and worries about where their next meals would come from.
Almost two-thirds of respondents said the pandemic has increased their duties because there was less access to outside help. Those they were caring for had increased needs just as healthcare and social services became more difficult to obtain. Caregivers were making less money and faced additional challenges posed by safety precautions like social distancing.
Half reported decreased emotional well-being, and 53 percent said they felt increased anxiety.
More than one in five Americans provide some unpaid caregiving to an elderly family member, a disabled relative or friend, according to the CDC. The typical caregiver is likely to be female, in the later part of middle-age and caring for someone with a long-term disability.
Some states offer programs to support unpaid caregivers, services such as group therapy sessions and food deliveries. But there’s no unified federal program to address their many needs. Nonprofits and state programs try to address the problem of declining mental health among caregivers on a national scale. But for many caregivers, these resources have not adequately addressed the struggles that they face.
Some, like Stinson, qualify for state support like visiting aides. But with the pandemic, that has been difficult to make happen.
“Our system is getting so messed up,” said Stinson. “We need more allies, more people that are going to fight for us. We’re tired, exhausted, and we need people to fight for us.”
Problems run deep
Samara Scheckler, a Harvard University postdoctoral fellow studying unpaid caregiving, said the problems facing unpaid caregivers are made worse by the lack of government support.
“There are no policies in place specifically meant to provide financial, professional, and emotional assistance to the millions of caregivers within the country,” she said. “There is a somewhat silent problem that is only growing as the amount of unpaid caregivers increases.”
It has been a long-term issue. In 2010, the Georgia-based Rosalynn Carter Institute for Caregivers used data from the AARP and the United Hospital Fund of New York as the basis for recommendations on how to best help caregivers.
The recommendations included implementing a presidential task force on caregiving and better funding for more caregiving resources.
The list of demands on unpaid caregivers is lengthy. An AARP study found those caring for the elderly spend, on average, spend 13 days a month on tasks such as shopping, food preparation, housekeeping, laundry, transportation and giving medication. They spend six days a month on feeding, dressing, grooming, walking, bathing and helping them in the bathroom. They spend 13 hours a month researching services and information on disease, coordinating doctor visits or managing finances.
And the typical caregiver often feels alone facing all these responsibilities, with increased stress, and wants help handling emotional and other needs.
Where more is being done
Some innovative solutions are being explored at the state and local level.
In Alaska, Jennifer Garrison, a regional coordinator for the Catholic Church’s Caregiver Support Program and the Bridge Adult Day Program in Juneau, said caregivers in the day program “are falling apart.”
“They have a lot of struggles and call and just vent. I think they’re overwhelmed with everything they have to worry about,” she said. The charity provides services like support groups, care planning and assistance for chores.
The state of Washington’s Department of Social and Health Services contracted with a private company, TCare Inc. of St. Louis, to assess caregivers’ mental health—especially signs of depression—and to help local organizations develop plans to offer more support.
The assessment addresses multiple aspects of a caregiver’s experience and how it affects them, according to Linda Miller, director of caregiver services for TCare.
“It focuses on assessing relationship burden, where this caregiving burden has an impact,” Miller said. “It would be diving into something like, ‘How is my caregiving affecting my role as daughter?’”
The assessment also examines what she termed “identity discrepancy,” which can leave a caregiver wondering, “‘Am I the daughter? Am I a caregiver?’ We’re measuring where they’re at versus where they see themselves.”
TCare has contracts with other states to do similar work.
“Once we get this assessment, the root cause of what’s causing the caregiver’s issues, we can develop a care plan centered around those root areas of the root cause,” Miller said. “Now we’re able to really identify who of [a local agency’s] clients are at the greatest risk for burnout.”
That sense of exhaustion is all too familiar for parents like Courtney Stinson, who is striving to create a stable and supportive environment for her family, a challenge even in normal times.
“One thing I hear a lot is someone saying ‘Oh, you’re so great, you’re Supermom.’ That might be true, but people have no idea how hard it is until they’re in it,” Stinson said.
“We have to work really hard to find happy things to do. We have to practice being grateful for what we do have. It can’t just be doom and gloom all the time, and it’s not. My daughter is bright and fun and happy. She’s just awesome. She deserves better than what she’s getting.”