Family Caregivers Feel the Pandemic’s Weight

Mary Ann Boor could see her husband’s Alzheimer’s disease progressing, and her responsibilities as his caregiver intensifying.

For years, David Boor had carefully taken diabetes medications. But as he grew forgetful, Ms. Boor had to start monitoring the doses and timing. She took over the driving and then the finances; she had to begin helping him bathe and dress.

The Boors, retired high school teachers who moved to a lakefront retirement home in Huron, Ohio, were managing on their own. “Then, about the time I thought maybe I should look into home health aides, the pandemic struck and I was leery of people coming into the house,” Ms. Boor, 71, recalled.

Her husband, 72, was a cancer survivor, she said, and “I didn’t feel I could take the chance, expose him to something that could be so serious.”

Through the many surges of Covid-19, several forms of support fell away. Ms. Boor’s yoga studio, a frequent refuge, shut down. Friends and relatives who occasionally kept Mr. Boor company, giving his wife a few hours’ break, couldn’t come. Her sleep suffered.

“It certainly put some additional burdens on me,” Ms. Boor said. “I was always thinking about, What if he gets sick? Or, what would happen if I became ill? That scared me even more.”

Most older Americans who need help with the so-called activities of daily living — bathing, dressing, eating, using a toilet — don’t receive any kind of paid care, at home or in care facilities. They rely on unpaid family caregivers.

Now, early research is showing how those caregivers struggled through 2020, as the pandemic made an already stressful job tougher.

A study recently published in The Gerontologist, comparing 576 family caregivers to nearly 3,000 non-caregivers, found significantly higher rates of anxiety, depression and disturbed sleep among the caregivers (average age, 59), most of whom were caring for people over 65.

The caregivers also reported less social interaction and more worries about finances and food, even after controlling for factors like income and employment.

“The pandemic has exacerbated things,” said Scott Beach, a social psychologist at the University of Pittsburgh and lead author of the study. “It impacted everybody, but it impacted caregivers more.”

The online survey, conducted in April and May of 2020, found disparate effects, as in many aspects of the Covid crisis. “Female caregivers, young caregivers, lower-income people and those providing more care — both personal and medical care — all were worse off,” Dr. Beach said.

If they were caring for people with cognitive disabilities like dementia, or with behavioral and emotional problems, “they fared really poorly,” he added.

At about the same time, Sung S. Park, a sociologist and demographer at the Harvard Center for Population and Development Studies, used a nationally representative online panel to explore caregivers’ mental and physical health. Her study distinguished between short-term caregivers, who had provided assistance for a year or less, and those who had been in the role longer.

The findings, from nearly 4,800 respondents, showed that while caregivers suffered more psychological distress and fatigue than non-caregivers, the length of service made a pronounced difference. Long-term caregivers had much higher rates of physical symptoms like headaches, body aches and abdominal discomfort.

The surges and shutdowns created a variety of problems for caregivers, said Grace Whiting, president and chief executive of the National Alliance for Caregiving. Some, like Ms. Boor, were afraid to bring helpers into their homes, paid or unpaid.

For others, as adult day centers and senior centers closed, “the feeling of being alone, with no relief valve for the complex emotions that come with caregiving, was amplified,” Ms. Whiting said.

Carol Brown moved from Missouri back into her childhood home in Livermore, Calif., in November 2019 to care for her 88-year-old mother, who could no longer live alone safely.

Although Ms. Brown, 58, felt glad to be able to keep her mother at home, “I cried a lot, watching my mother aging, feeling my own upheaval,” she said. What helped was a twice-monthly caregiver support group whose members, like her, were women caring for mothers with dementia.

“It was emotionally good to be with them,” Ms. Brown said. “They’d all been through the wringer. And they were a font of information.”

She misses their support. With the pandemic, the group moved online, but Ms. Brown found Zoom sessions unsatisfying and stopped participating.

Other caregivers ran into trouble accessing health care, either for themselves or their loved ones. Ora Larson, 82, was scheduled for back surgery in the spring of 2020 in St. Paul, Minn., and was looking forward to relief from the disabling pain of spinal stenosis. Then, as hospitals filled with Covid patients, her operation was postponed until October, then delayed again.

As she waited, “her ability to get all kinds of therapy went away,” said her daughter, Susan Larson, 57. “She couldn’t go to exercise, or have a physical therapist or trainer come to the house, so she got weaker and weaker and her pain increased.”

As Ms. Larson watched her lively mother grow depressed and lose much of her ability to walk, “I felt stressed in the way you do when you’re not sure what your next move is going to be,” she said. Her mother finally underwent surgery in March and is recovering well.

Further studies will reveal more about the ongoing effects of Covid on caregivers. Perhaps they adapted as the pandemic ground on, and their stress abated. Some welcome the meaning and purpose that comes with helping family members.

But the cumulative negative effects, month after month, could also mean greater hardship. And as Dr. Park pointed out, “there would be a greater probability of bereavement and grieving.”

The caregivers interviewed here, and their family members, have been vaccinated and are slowly starting to resume visits and local excursions. But they also recognize that elder care tends to grow more demanding, not less. Those they care for have lost ground physically and cognitively, and may be unable to return to their prepandemic selves.

Stacey Lantagne, 40, a law professor at the University of Mississippi, spent the pandemic with her family in Rhode Island, where she helped care for her grandmother while also teaching a full course load online.

Her grandmother, 89, had loved attending a dementia day program three days a week, and Ms. Lantagne was relieved when it reopened and she could safely return. “But she hadn’t left the house in so long that she was really frightened,” Ms. Lantagne said. So her grandmother attends just twice weekly; the family hopes she can increase her participation soon.

Several Biden administration proposals could bring some relief for family caregivers, who have saved the health care system so much money while sacrificing so much themselves.

The American Jobs Plan, which sees caregiving as part of the nation’s infrastructure, would allocate $400 billion to expand access to home and community care for the elderly and disabled through Medicaid, while raising wages and benefits for home care workers. (It may not do much for seniors who don’t qualify for Medicaid, however.)

The American Families Plan would establish paid family and medical leave nationally, guaranteeing up to 12 weeks of paid leave by the program’s 10th year.

When Mr. Biden announced the plan in April, pointing out that it would cover the cost of care not only for children but also for seniors, “I was tearing up on my couch,” Ms. Whiting said. “It was remarkable to hear him talk about elder care as a normal part of life.”

Those proposals face a fight in the Senate, however. For now, as usual, family caregivers remain largely on their own.

The Boors have been able to resume some family visits, but Ms. Boor is still managing her husband’s care virtually alone. She copes with stress by knitting and talking to her daughter by phone.

And she prays. “I ask God for some help, and he’s always there for me,” she said.