November 30 2022 1:14 AM E-paper Subscribe Sign in My Account Sign out

Family caregivers feel the pandemic’s weight

Mary Ann Boor walks along a lakeshore with her husband David
Mary Ann Boor walks along a lakeshore with her husband David, whose progressing Alzheimer’s disease is intensifying her responsibilities as his caregiver, May 18, 2021. (Photo: NYTimes)
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, Mary Ann 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.اضافة اعلان

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,” Mary Ann 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. Mary Ann Boor’s yoga studio, a frequent refuge, shut down. Friends and relatives who occasionally kept David Boor company, giving his wife a few hours’ break, couldn’t come. Her sleep suffered.

“It certainly put some additional burdens on me,” she 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 (whose average age was 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 such as 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 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,” Beach said.

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

At about the same time, Sung 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 such as headaches, body aches and abdominal discomfort.

The surges and shutdowns created a variety of problems for caregivers, said Grace Whiting, president and CEO of the National Alliance for Caregiving. Some, like Mary Ann 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,” Whiting said.

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

Although 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,” 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 Brown found Zoom sessions unsatisfying and stopped participating.

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