By Hannah Critchfield
For Mark Newton, each visit to the grocery store tempts fate.
He arrives during early or late hours when the business is mostly empty, but he can’t control the checkout line – or the flood of fear that rushes in every time he finds himself surrounded by other too-close patrons, their noses peeking out over masks, or mouths and noses on full display.
Newton, a retired carpenter with diabetes, is in his 50s. He’s the primary caretaker for his 82-year-old roommate, who suffers from dementia, and also happens to be his mother.
Like many North Carolinians, he still isn’t sure when he will be offered the novel coronavirus vaccine.
“My mother getting vaccinated is great,” said Newton. “But if she gets COVID-19, it’s going to be from me, because I’m the only one that goes out and gets us what we need.”
Over the last few weeks, health care workers who interact with COVID patients and employees who work with older people in long-term care facilities in North Carolina have been offered the vaccine.
People who assume unpaid home health caretaking roles for elderly family members or loved ones have not. Many of these workers feel left behind by the state vaccine plan and remain confused about if they have any priority for immunization.
“If I come down with the virus,” Newton said, “There is no one else to take care of her.”
Digging for information
North Carolina’s current plan for the COVID-19 vaccine rollout mirrors past federal Centers for Disease Control and Prevention recommendations for distribution.
Employees who work with older or at-risk people in long-term care facilities such as nursing homes were given first priority under the plan, in Phase 1a. So were professional home health workers and personal care aides who directly care for patients with COVID-19.
Family home health caregivers are different. They tend to care for one or two loved ones living in the same household and are often not compensated for their labor.
The scope of their work varies, but they nevertheless work in close contact with people who are often elderly and at increased risk for severe illness from COVID-19. North Carolina is home to approximately 28,828 of these informal caregivers, according to the nonprofit Family Caregiver Alliance.
Newton has been his mother’s primary caretaker for 13 years. She has frequent strokes and a history of blockages in her carotid, the artery that feeds the brain, he said. Before health problems forced her to retire, she was a geriatric nurse who often worked in long-term care facilities.
“At some point, she’s going to reach a point where I can’t care for her,” Newton said. “I’m trying to make preparations for that. But I would never send her to a facility now — it would be a death sentence.”
Forty percent of all deaths due to COVID-19 nationwide have been in long-term care facilities, in North Carolina that number has been closer to 46 percent. That’s led many family caregivers in North Carolina to delay placing their loved ones in a group home until the pandemic subsides, no matter how useful or needed it might be.
Newton doesn’t know where he fits into the state’s plan as an unpaid caregiver.
“Resources are never, never painlessly handed to you in North Carolina,” said Newton, who is originally from Rhode Island. “You have to dig for them.”
The Department of Health and Human Services, which sets the state’s vaccine plan, declined multiple requests from NC Health News to clarify where family caregivers fall in the vaccine distribution plan.
It’s likely they will be offered doses as part of group 3 of Phase 1b, which includes, “unpaid health care workers with direct patient contact.” If they’re 50 or older, these family caregivers could be vaccinated earlier, in group 2.
Some North Carolina counties began moving into group 1 of Phase 1b this week, which prioritizes people who are 75 and older.
‘We’re out here on a limb’
Robb Amrine wasn’t sure if he’d be included as a home health care worker in Phase 1a, but he thought his wife Penny – “my precious coin for 49-and-a-half years,” he said – would surely be next in line.
Penny has dementia, as well as a series of other preexisting conditions such as diabetes and hypothyroidism that place her at increased risk for severe illness from COVID-19.
But she’s 70, five years shy of the cutoff for the current distribution round, known as Phase 1a.
Amrine, who is 71, has been the primary caretaker for his wife for the last three years, administering insulin and ensuring she takes medications daily in their Cary home. Without him, she’d need to live in a skilled nursing facility, he said.
When Amrine found out neither of them would be in the initial rollout of phase 1b, it was an ineffable blow, he said.
“It’s beyond frustrating,” he said. “We’re talking about our lives and we’re talking about our health. And all I have to do is go out and get the COVID-19 virus, and she’ll be infected.”
Like Newton, he still doesn’t know when it’ll be either of their turns for vaccination and is waiting for a response from WakeMed Hospital in Raleigh, where he called in an attempt to clarify the plan last week.
Currently, Amrine believes both he and his wife will need to wait with other individuals who are 65 or older for a chance to get vaccinated in Phase 2, despite his caretaking role and her risk factors. This week, federal officials gave states the latitude to offer the vaccine to everyone over the age of 65. North Carolina has about 1.8 million people over 65 but has only received about a half-million doses of vaccine.
“We don’t understand why we were carved out of the equation, other than the fact that I believe is because it’s just easier. ‘Show me your ID that’ll tell me how old you are’ is a yes-no situation, versus, ‘Let’s delve into your health history’ with HIPAA laws and so forth, and, ‘Can you really prove that this is true that you have these conditions or do this [caregiving]?’”
For now, they, like many Tar Heels, remain in limbo.
“We’re out here on a limb and have no idea when, what could happen, where, nothing,” he said.
Scientists don’t yet know if receiving the COVID-19 vaccine prevents someone from spreading the virus to others. It’s played a role in consideration of who should be prioritized in the rollout.
“You have to think about a person’s risk of getting the disease, and their risk of transmitting it, and the risk of getting ill from it,” said Philip Sloane, a geriatrician and co-director of the Program on Aging, Disability, and Long-Term Care at the University of North Carolina School of Medicine. “The number one thing is to get the care recipient vaccinated. They’re the ones who you’re really trying to prevent getting infected because they’re at highest risk.”
Family caregivers may be deprioritized because of their relatively low-level of interaction with others in their work, according to Sheryl Zimmerman, director of aging research at the UNC School of Social Work and fellow director at the Program on Aging, Disability, and Long-Term Care.
“Family caregivers are surely essential workers,” she said. “But the number of people for whom they’re responsible is fewer than all other, more-recognized essential workers.”
Sloane echoed this.
“Paid caregivers that travel from person-to-person are at much higher risk of getting the illness than somebody who stays home,” he said. “Family caregivers, who just take care of one or two people in the same setting, are not the same as somebody who works in a supermarket, and has to deal with 150 people in a shift, or a home health worker who goes to probably 20 or 30 homes in a week.”
After the Trump administration overhauled its vaccine strategy, urging states to provide vaccination to everyone 65 or older, DHHS Secretary Mandy Cohen told reporters at a press conference that North Carolina’s vaccine advisory committee will review these recommendations and consider if the state needs to make changes to its plan.
Such changes could mean some family caregivers, or the loved ones whose health care they oversee, will be offered the vaccine at an earlier date.
UPDATE: After this article ran, the North Carolina Department of Health and Human Services announced it was overhauling its current vaccine plan to align with new CDC guidelines released earlier this week.
Anyone 65 and older will now be prioritized for the vaccine next, after first-responder health care workers and long-term care staff and residents, in what’s now known as Group 2. Essential workers come next, in Group 3.
A spokesperson for DHHS also reached out after the article ran to clarify where family caregivers fall in the new plan:
“At this time, people who serve as caregivers to older adults would be considered frontline essential workers and included in Group 3 of the vaccine rollout,” said SarahLewis Peel, DHHS spokesperson.
“The vaccine prioritization is designed to save lives and prevent spread while vaccine supplies are limited,” she added. “North Carolina moves through vaccination phases by aligning to federal priorities while giving local health departments and hospitals the flexibility to move to the next priority group as they complete the previous one and have vaccines available.”