Skip to main content

Caregiver fatigue left millions suffering in silence during COVID-19

Sarah Elbeshbishi   | Paste BN

MJ Grant is no stranger to taking care of parents. After starting to care for her mother in 2016, Grant eventually found herself living with and caring for her mother and mother-in-law, both of whom suffer from dementia.

Before the pandemic, Grant and her husband found a nursing home for her mother-in-law, slightly lessening their caregiving responsibilities. Then the pandemic threw in new obstacles that made taking care of her mother, who is deaf, much harder.

“It was almost like it was overnight. It was like her environment changed because we were all home, and she just got more confused. Her expectation of, like, people having to be around all the time was it for her,” said Grant, a sign language interpreter. “I couldn’t even come upstairs and just sit here at my computer to interpret a meeting without hearing her stomping and banging on the floor because she was scared.”

As the world marked the two-year anniversary of the COVID-19 pandemic, research found that among the 53 million Americans serving as caregivers, many battle fatigue.

More than 1 in 5 Americans are caregivers for either an adult family member or a child with special needs. The number of family caregivers has increased since 2015, and there has been an increase of nearly 8 million caregivers for adults age 50 or older, according to AARP.

A study in Gerontology and Geriatric Medicine found that the pandemic worsened the burden on Americans caring for a parent, the self-rated burden increasing 3 percentage points compared with pre-pandemic scores.

“I think of caregiver fatigue as that overwhelming sense of physical tiredness really that comes from either the physical or mental demands of providing care to a loved one,” said Heidi Donovan, a professor of health and community systems at the University of Pittsburgh School of Nursing. “I think a lot of it is the kind of strain that comes from the feeling of responsibility towards somebody else.”

As the number of family caregivers has increased, the resources and support haven’t. The AARP report found data to suggest that most caregivers lack adequate and affordable support and services to properly care for their loved ones – further exacerbating the mental and physical toll on Americans serving as caregivers.

For Grant, some of the issues were compounded during the pandemic when her mother, Carmen, began "sundowning" – a condition in which those with dementia or Alzheimer’s disease experience restlessness, irritability or confusion that can worsen as the day progresses. The increase in needs from her mother, along with the communication barrier, added to the stress of being a caregiver.  

“It just became extremely difficult, and I was really getting depressed. We didn’t have any help,” Grant said.

►COVID-19 relief: Congress let relief expire. Millions of kids have fallen into poverty.

Social isolation linked to higher rates of anxiety and depression

The World Health Organization reported that the pandemic caused a 25% increase in anxiety and depression globally, noting that social isolation was a stress factor contributing to the spike.

Barry Jacobs, a Pennsylvania-based clinical psychologist and family therapist,  emphasized the physical and mental health risks of isolation for family caregivers.

“Caregivers have been so afraid to go out into the world and then potentially come back and infect the person they’re committed to caring for,” Jacobs said. “They have been even more socially isolated than maybe other Americans have been."

Jacobs said that as COVID-19 case numbers go down and the rest of the world engages in society again, caregivers aren’t willing to take that chance yet.

“They’re not seeing other family members the way other folks are doing. So there’s still a large degree of social isolation among hardcore caregivers,” Jacobs said.

One in four caregivers reported that caregiving made their own health worse, according to AARP, which makes support for them even more critical.

►COVID-19's 'silver lining': Research breakthroughs for chronic disease, cancer and common flu

'I just need a break': the pandemic's impact on caregivers

Beverly Nance provides full-time care for her daughter Tylar, 28, who is on the lower end of the autism spectrum and developed epilepsy as an adolescent. She prepares Tylar’s meals, bathes and cleans her and always keeps a close eye on her.

“A lot of what I do is keeping her safe from herself because she has a lot of behaviors where, like she’ll take her fingernails out of her nail beds. She tears up a lot of stuff. She’s a danger, kind of like, to herself,” Nance said.

Before COVID-19, Tylar participated in a respite program about once a month, where she, along with other adults with autism, would spend a week or weekend with home health aides, participating in community events that allowed her to socialize.

“It gave the parents a time they could have to breathe, relax, you know, whatever it is that you want to do,” Nance said. “You can take a break from your caregiving, and you can go out to dinner, whatever.”

That program, like many others, stopped once the pandemic hit. The program came back in October 2021, but COVID-19 cases spiked again because of the omicron variant of the coronavirus. The program continued, requiring participants to wear masks.

Nance acknowledged that there’s some guilt for parents about sending their children to respite or similar programs, but she encourages them to participate as a way to care for themselves, too.

“I missed it so much during the pandemic. I hate to tell people that because then you get a little judgment, but … I need to sleep,” Nance said. “I’ll be honest, I don’t feel like changing diapers all the time. I want to wake up on my own time, and I would like to pitter around the house alone sometimes.”

Along with providing full-time care for her daughter, Nance runs her own home-based business, making jigsaw puzzles. It can be difficult to get things done while caring for her daughter.

As COVID-19 cases go down and the respite program resumes, Tylar is on track to spend a weekend with her peer group in April, something both she and Nance look forward to.

“If April 1 happens, I will be one happy mother. I’m under so much stress right now, people don’t understand,” Nance said. “I just need a break.”

More COVID-19 coverage from Paste BN

Facebook Twitter Email