Eric McGuire relies on home health care workers for almost everything: helping him get from his bed to a wheelchair, assisting with bathing and dressing, checking his oxygen levels while he sleeps.
Last week, one of his caregivers told him she thought she had a sinus infection but had arranged to be tested for the novel coronavirus just to be sure and was self-quarantining as a precaution. She asked whether he was showing any symptoms.
McGuire, 43, felt fine, but was worried about whether she could have passed something along to him during a visit to his Franklin home. And as he battles to regain the use of his legs after a nerve disorder nearly killed him two years ago, he worries how he would get by if his aides stop coming.
“It’s a scary world out there,” said McGuire, who doesn’t have the option of isolating himself and telling people to stay away. "You have to worry about who comes in your house and who shakes your hand.”
The rapid spread of COVID-19 is wreaking havoc on home health care workers and millions of disabled, ailing, or elderly Americans who consider them a lifeline — often the difference between living independently or in a nursing home.
Those who need in-home care, ranging from housekeeping chores and help bathing to vital health services, are afraid of being infected by workers who travel from home to home. Workers, too, feel vulnerable as they worry about catching and transmitting the virus to their own families while trying to protect themselves and their clients amid a national shortage of masks.
“It’s having a profound impact on all levels,” said Mark Friedman, owner of Senior Helpers Boston & South Shore, a home care agency that employs about 140 caregivers. “A lot of people are putting services on hold out of fear. You have to respect that. People are scared.”
About a dozen clients in the Boston area have canceled service in the past week, wary of having personal care assistants in their homes, Friedman said.
So far, none of the workers or the clients they serve has been infected with coronavirus, Friedman said. He said his agency is taking a wide range of precautions, doing daily check-ins with home health aides to make sure they’re not showing symptoms when they report to work and checking again after their shifts.
In many cases, the seniors who’ve stopped home care have moved in with relatives or had relatives move in with them, he said. About half of those who’ve stopped service are veterans whose care is underwritten by the Veterans Administration.
Friedman said his home care business, like many others, has not been able to acquire masks given the intense demand.
Rebecca Gutman, vice president of 1199SEIU United Healthcare Workers East, which represents more than 55,000 personal care attendants in Massachusetts, said the vast majority of home care workers do not have access to masks.
“They are committed to continuing to go to work, but they are also going to work scared," said Gutman, adding that some of those fears could be allayed if there were enough masks to go around.
Many home care workers are living paycheck to paycheck and couldn’t afford to stop working during the pandemic, she said. Home care aides typically earn between $12 and $14 an hour, while unionized personal care attendants earn $15.40 an hour.
“Both the workers and the people they are caring for are both vulnerable populations, so we need to make sure workers have the protections they need,” Gutman said. She said the union has been working with state officials to obtain more masks for workers.
William Dombi, president of the National Association for Home Care & Hospice, a nonprofit trade organization, said one large company that provides home care to about 35,000 patients recently received 8,000 visit cancellations within a week.
At the same time, there has been a surge of new patients who are afraid of going to nursing homes after reports that a facility in Kirkland, Wash., was the epicenter of that state’s coronavirus outbreak.
Dombi said people are trying to weigh the risk of letting home health care workers into their home while recognizing, “You’ve got a risk if you don’t get care.”
Dombi said he has been informally surveying companies to determine whether staff has declined to provide in-home care and was told it’s very rare.
“They are stepping up and saying, ‘This is why we are here,’” Dombi said.
Maria Colville, a personal care assistant from Cambridge, has begun wearing a mask in recent weeks as she cares for her client, a Watertown woman in her 80s who uses a wheelchair. Colville comes by for a few hours every day to help her get dressed and take a bath. She also does dishes and laundry.
“There’s certain things we have control over,” said Colville, who’s cared for people in homes, hospitals, and rehab facilities for the past three decades. “If you yourself are panicking, then you charge the atmosphere with fear. We need to be of calm mind and confident of our abilities when we come to the consumer."
A big part of the caregivers’ job now, Colville said, is psychological, doing their best to ease the fears of people they care for.
“Most of the elderly people are scared because they know they’re in a vulnerable place,” she said. “If you’re taking care of more than one client, they don’t know who you’re coming into contact with."
Donna Whelan, a certified nursing assistant in Worcester who has been caring for patients in their homes for 40 years, said she had to self-quarantine for 20 days while waiting to learn whether she had the flu or COVID-19. On Wednesday, her doctor told her she had tested negative for coronovirus and was cleared to leave her house.
Even though she knows the virus can be deadly, Whelan, 61, is more focused on keeping a paycheck.
“I was more worried about: ‘Am I going to have a roof over my head? Am I going to have food?’”
Whelan said she was grateful that two nursing assistants were able to care for her patients while she was sick. She’s not worried about returning to work and said she feels obligated to be there because she knows her patients need her.
“I’m very cautious,” said Whelan, who washes her hands 30 to 40 times a day and wears gloves and a mask while caring for patients. She bought masks before the recent outbreak.
Ron Hoffman, executive director of Compassionate Care ALS, a Falmouth-based nonprofit that provides assistance to more than 600 families, said he and his staff are working virtually. They speak with families via telephone, Skype, and FaceTime. If a family needs equipment, they leave it on their doorstep, and he recently matched a family in sudden need of services with a local caregiver from Uganda.
“There are still people out there who need a lot of help,” Hoffman said.
HouseWorks, a Newton company that serves about 200 clients in the Boston area, has adopted new precautions to prevent coronavirus infections. Among other things, it’s requiring caregivers to take infectious disease training online and follow strict federal screening protocols, and it has brought in a doctor to provide general consults with clients.
"I assume all the calls will be about coronavirus in the next few months," said Andrea Cohen, the HouseWorks chief executive.
For McGuire and his fiancee, Melissa Baptista, a nurse, it’s a difficult time to be searching for home care. The former construction worker was diagnosed two years ago with Guillain-Barré syndrome, a rare disorder that caused extensive nerve damage, and he has respiratory issues.
McGuire learned Monday that his ailing caregiver tested negative for the coronavirus. He said he’s fortunate that he has two trusted nursing assistants who have cared for him since he was well enough to return home. He recently placed ads on Craigslist and a state website for additional caregivers needed overnight and weekends, but has received few responses.
“There are people who have it so much worse with the coronavirus and I don’t mean to complain," he said. "But it went from hard to almost like unbelievable.”