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This article first appeared in the Wall Street Journal. Read the original there.
Over the past three years, Paula Newbaker has relied on in-home caregivers to help with her 88-year-old mother, who has dementia.
When the new coronavirus began spreading last month, Ms. Newbaker and the caregivers decided that the risks were too great for them to continue coming to the home in western Pennsylvania. Since then, her mother has become more disagreeable and lost some mobility. While Ms. Newbaker is eager to have the caregivers back, she’s cautious.
“I don’t know when we are going to feel safe enough for that,” she says.
The coronavirus is putting a new focus on the importance of home care and the strains on its workers and the people relying on them. Some families are canceling in-home care as they fear risks of contagion for older parents and relatives. Others are taking loved ones out of nursing facilities, hoping to avoid a deadly outbreak, and now looking for home-health aides. At the same time, the virus is a threat to the home-care workers, who are out in the community providing hands-on care for average wages of $12-$13 an hour.
Even before the pandemic, demand for home-health aides was expected to exceed supply by more than 3 million in the next decade. Until there is a vaccine that can protect those most at risk, the need for these workers, whether paid by individuals or through Medicare and Medicaid, is expected to remain high. “The most vulnerable to Covid are going to be staying home longer than the rest of us and are going to need help to keep them safe,” says Janet Kim, spokesperson for Caring Across Generations, an advocacy group for paid and family caregivers.
A month ago, none of the 600 home-care providers represented by the Ohio Council for Home Care and Hospice had reported infections among workers, says Joe Russell, the council’s executive director. “Now everyone does have some of their work force quarantined or actually sick,” says Mr. Russell, who organized a drive for donations of personal protective equipment to home-care agencies that didn’t have enough. The Centers for Medicare and Medicaid Services issued guidelines for home health-care agencies, recommending wearing face masks and giving flexibility to allow telehealth for some services.
Data on the impact of Covid-19 on home-care workers is scarce. The Centers for Disease Control and Prevention reported that as of April 9 in the U.S. more than 9,200 health-care professionals, a much broader sector, had been infected with the coronavirus, and said it was likely an undercount. Bianca Frogner, director of the Center for Health Workforce Studies at the University of Washington in Seattle, estimates that if all such workers were tested, around 425,000 direct-care workers—which includes home-health aides, personal-care aides and nursing assistants—would test positive, based on data as of April 22 from Washington state, New York, the Centers for Disease Control and Prevention and Johns Hopkins University. The actual positive cases will depend in part, she says, on how well workers are protected with equipment.
Yet demand continues to rise. In the last three weeks, Jeff Huber, CEO of Home Instead Senior Care, has seen an increase in the number of people looking for in-home care, as well as the degree of their need. The average hours of care per client has risen to 30 hours a week from 20-25, he says. “These are people coming out of hospitals to make room for more Covid-19 patients,” says Mr. Huber, whose Home Instead has more than 1,100 home-care franchises world-wide.
Anne Cassista, of Ashland City, Tenn., recently took her 92-year-old husband, Floyd, out of a memory-care unit of a psychiatric facility because she was no longer able to visit him due to Covid-19 restrictions. He entered the unit in early April and his condition had deteriorated. He wasn’t eating and was in diapers.
“I know we are both coming to the end of the journey, but I didn’t want him to die without me holding his hand,” says Mrs. Cassista, 85, and a former ballet dancer. They have been married 15 years, since they met at church, where Mr. Cassista passed the collection basket. He was a handsome man who dressed nicely and had silver hair, she says. “It looked like a halo.”
To bring him home, Mrs. Cassista needed help. She assembled a team, including privately paid caregivers who come four days a week for four hours. Her husband has been home since April 15 and is eating better and able to walk and carry on conversations, she says.
The coronavirus also has upended home-care arrangements for those with disabilities. Katrina Simons, 32, a community-program specialist for the University of Minnesota, has cerebral palsy and relies on a team of part-time workers coming into her Minneapolis apartment to get her in and out of bed, bathed, dressed and fed. She needs three hours of help in the morning and four in the evening and pays $13.25 an hour.
In mid-March, several caregivers who were college students told her they were going home because classes were canceled. “I lost four staff in 48 hours,” says Ms. Simons.
A week ago, another helper quit to do child care for a family that asked that she work exclusively for them because of the virus risks, offering to pay her $20 an hour.
Now Ms. Simons’s home-care setup is tenuous. Filling in various shifts are a waitress who was laid off from a pizza shop at the airport, a musical therapist who lost her job, and an apprentice in a welding program that was suspended. She expects most of them to eventually return to their full-time jobs and programs.
‘I’ve always been worried about a staff shortage, and I worry about it getting worse during Covid-19,” she says. “It’s not a job many people would take. They can earn more collecting unemployment.”
Many home-care aides continue to work, taking extra precautions to keep themselves and the people they care for safe.
Sheila Bingham Jones, 55, arrives five mornings a week at the home of Ernest Jackson, 93, one of the first African Americans in the Marine Corps. She makes his breakfast, buys groceries, and tends to his swollen legs. Before the pandemic hit, she took him to his medical appointments. Now she talks with the doctors on the phone.
When packages arrive, she disinfects the contents outside the house. She sprays the bottom of her shoes or brings an extra pair, and wipes down counters, door handles, phones, and remote controls when she arrives. If she uses his debit card to buy groceries, she sanitizes it after and keeps it in a Ziploc bag. “I’m on heightened mental alert,” she says.
When she told Mr. Jackson he could no longer come into the grocery store or bank with her, he initially objected. “I had to sit down and explain the seriousness of what is going on,” says Ms. Bingham Jones, who takes the same precautions when she stops in to see her 87-year-old mother, who lives with her brother.
She never considered not coming to care for Mr. Jackson. “It’s my job, but I love what I do,” she says.
Mr. Jackson’s daughter, Lynette Johnson, 69, lives 70 miles away and relies on Ms. Bingham Jones, and the safety measures she takes, to help her father remain at home where he is safe and happy. “I don’t have to worry,” she says.
Ms. Newbaker, in western Pennsylvania, left her public-relations job in Washington, D.C., three years ago to help care for her mother—Eralda, known as Rae—who has dementia and spinal stenosis. Two caregivers, one a physical therapist and the other occupational, were coming to their home two mornings a week.
When the coronavirus began spreading and the state issued a shelter-in-place order, she and her caregivers decided it was best they didn’t come. The caregivers worked at other facilities and could unwittingly bring the virus into the Newbaker home. Rae was also due for a six-week Medicare-covered physical-therapy package, but Ms. Newbaker and her mother’s doctor agreed to hold off because of Covid 19.
It’s been difficult, says Ms. Newbaker. The home-care workers brightened their days, and sometimes noticed things Ms. Newbaker didn’t, like a scaly patch on her mother’s skin or redness in her eyes. They bathed her mother, got her to take her medication and exercise, all things that she resists when her daughter does them.
“It’s taking a toll on both of us,” Ms. Newbaker says.