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Month: February 2021

Family Caregivers, Routinely Left Off Vaccine Lists, Worry What Would Happen ‘If I Get Sick’

Robin Davidson entered the lobby of Houston Methodist Hospital, where her 89-year-old father, Joe, was being treated for a flare-up of congestive heart failure.

Before her stretched a line of people waiting to get covid-19 vaccines. “It was agonizing to know that I couldn’t get in that line,” said Davidson, 50, who is devoted to her father and usually cares for him full time. “If I get sick, what would happen to him?”

Tens of thousands of middle-aged sons and daughters caring for older relatives with serious ailments but too young to qualify for a vaccine themselves are similarly terrified of becoming ill and wondering when they can get protected against the coronavirus.

Like aides and other workers in nursing homes, these family caregivers routinely administer medications, monitor blood pressure, cook, clean and help relatives wash, get dressed and use the toilet, among many other responsibilities. But they do so in apartments and houses, not in long-term care institutions — and they’re not paid.

“In all but name, they’re essential health care workers, taking care of patients who are very sick, many of whom are completely reliant upon them, some of whom are dying,” said Katherine Ornstein, a caregiving expert and associate professor of geriatrics and palliative medicine at Mount Sinai’s medical school in New York City. “Yet, we don’t recognize or support them as such, and that’s a tragedy.”

The distinction is critically important because health care workers have been prioritized to get covid vaccines, along with vulnerable older adults in nursing homes and assisted living facilities. But family members caring for equally vulnerable seniors living in the community are grouped with the general population in most states and may not get vaccines for months.

The exception: Older caregivers can qualify for vaccines by virtue of their age as states approve vaccines for adults ages 65, 70 or 75 and above. A few states have moved family caregivers into phase 1a of their vaccine rollouts, the top priority tier. Notably, South Carolina has done so for families caring for medically fragile children, and Illinois has given that designation to families caring for relatives of all ages with significant disabilities.

Arizona is also trying to accommodate caregivers who accompany older residents to vaccination sites, Dr. Cara Christ, director of the state’s Department of Health Services, said Monday during a Zoom briefing for President Joe Biden. Comprehensive data about which states are granting priority status to family caregivers is not available.

Meanwhile, the Department of Veterans Affairs recently announced plans to offer vaccines to people participating in its Program of Comprehensive Assistance for Family Caregivers. That initiative gives financial stipends to family members caring for veterans with serious injuries; 21,612 veterans are enrolled, including 2,310 age 65 or older, according to the VA. Family members can be vaccinated when the veterans they look after become eligible, a spokesperson said.

“The current pandemic has amplified the importance of our caregivers whom we recognize as valuable members of Veterans’ health care teams,” Dr. Richard Stone, VA acting undersecretary for health, said in the announcement.

An estimated 53 million Americans are caregivers, according to a 2020 report. Nearly one-third spend 21 hours or more each week helping older adults and people with disabilities with personal care, household tasks and nursing-style care (giving injections, tending wounds, administering oxygen and more). An estimated 40% are providing high-intensity care, a measure of complicated, time-consuming caregiving demands.

This is the group that should be getting vaccines, not caregivers who live at a distance or who don’t provide direct, hands-on care, said Carol Levine, a senior fellow and former director of the Families and Health Care Project at the United Hospital Fund in New York City.

Rosanne Corcoran, 53, is among them. Her 92-year-old mother, Rose, who has advanced dementia, lives with Corcoran and her family in Collegeville, Pennsylvania, on the second floor of their house. She hasn’t come down the stairs in three years.

“I wouldn’t be able to take her somewhere to get the vaccine. She doesn’t have any stamina,” said Corcoran, who arranges for doctors to make house calls when her mother needs attention. When she called their medical practice recently, an administrator said they didn’t have access to the vaccines.

Corcoran said she “does everything for her mother,” including bathing her, dressing her, feeding her, giving her medications, monitoring her medical needs and responding to her emotional needs. Before the pandemic, a companion came for five hours a day, offering some relief. But last March, Corcoran let the companion go and took on all her mother’s care herself.

Corcoran wishes she could get a vaccination sooner, rather than later. “If I got sick, God forbid, my mother would wind up in a nursing home,” she said. “The thought of my mother having to leave here, where she knows she’s safe and loved, and go to a place like that makes me sick to my stomach.”

Although covid cases are dropping in nursing homes and assisted living facilities as residents and staff members receive vaccines, 36% of deaths during the pandemic have occurred in these settings.

Maggie Ornstein, 42, a caregiving expert who teaches at Sarah Lawrence College, has provided intensive care to her mother, Janet, since Janet experienced a devastating brain aneurism at age 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.

In a recent opinion piece, Ornstein urged New York officials to recognize family caregivers’ contributions and reclassify them as essential workers. “We’re used to being abandoned by a system that should be helping us and our loved ones,” she told me in a phone conversation. “But the utter neglect of us during this pandemic — it’s shocking.”

Rosanne Corcoran (right) and her mother, Rose, at Rose’s 80th birthday party in 2008. Rose now has advanced dementia and lives with Corcoran and her family. Corcoran hopes to get the vaccine but has been unable to yet. “If I got sick, God forbid, my mother would wind up in a nursing home,” she says. (Daniel Francis)

Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers became ill with covid and unable to carry on, the state’s nursing homes would be overwhelmed by applications from desperate families. “We don’t have the infrastructure for this, and yet we’re pretending this problem just doesn’t exist,” she said.

In Tomball, Texas, Robin Davidson’s father was independent before the pandemic, but he began declining as he stopped going out and became more sedentary. For almost a year, Davidson has driven every day to his 11-acre ranch, 5 miles from where she lives, and spent hours tending to him and the property’s upkeep.

“Every day, when I would come in, I would wonder, was I careful enough [to avoid the virus]? Could I have picked something up at the store or getting gas? Am I going to be the reason that he dies? My constant proximity to him and my care for him is terrifying,” she said.

Since her father’s hospitalization, Davidson’s goal is to stabilize him so he can enroll in a clinical trial for congestive heart failure. Medications for that condition no longer work for him, and fluid retention has become a major issue. He’s now home on the ranch after spending more than a week in the hospital and he’s gotten two doses of vaccine — “an indescribable relief,” Davidson said.

Out of the blue, she got a text from the Harris County health department earlier this month, after putting herself on a vaccine waitlist. Vaccines were available, it read, and she quickly signed up and got a shot. Davidson ended up being eligible because she has two chronic medical conditions that raise her risk of covid; Harris County doesn’t officially recognize family caregivers in its vaccine allocation plan, a spokesperson said.

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Vaccine Hesitancy vs. Vaccine Refusal: Nursing Home Staffers Say There’s a Difference

CONCORD, N.C. — It had been months since Tremellia Hobbs had an excuse to bring out the pompoms. Before the pandemic, they were a crowd favorite at movie nights and bingo tournaments that Hobbs organized as activities director at the Brian Center Health & Retirement/Cabarrus nursing home.

On Jan. 14, she finally had a reason. After nearly a year of living with pandemic restrictions and a summer outbreak that killed 10 residents and infected 30 staff members, the nursing home was hosting its first covid-19 vaccine clinic.

So Hobbs lifted the red and silver tassels into the air and cheered as her co-workers lined up to get shots from two visiting CVS pharmacists. “Stewart, Stewart, he’s our man! If he can’t do it, no one can! Goooo, Stewart!”

But even as Hobbs rooted for her colleagues, decorated the dining hall with green and blue balloons, and assembled goodie bags with Life Savers gummies for those who received their shots, she knew she wouldn’t be getting the vaccine herself.

“Being able to diagnose, come up with a vaccine and administer it all within the same year just seems a little puzzling,” she said. “I would like to see, give it a little more time.”

Hobbs’ hesitancy has been echoed by nursing home staff members across the state and country. But her reasoning — as well as that of her colleagues who also opted against the vaccine that day — goes far beyond a simple yes or no. The decision is complicated and multifaceted, they said, which means persuading them to say yes will be, too.

In North Carolina, the health secretary has said more than half of nursing home workers are declining the vaccine. A national survey found that 15% of health care workers who had been offered the vaccine said no, with nursing home personnel more likely to refuse than hospital staffers.

The trend has concerned public health officials, who say vaccines are among the best ways to protect vulnerable elderly residents who may be infected by asymptomatic staff members. Although long-term care facilities house less than 1% of the nation’s population, they’ve accounted for 37% of covid deaths, according to the COVID Tracking Project.

Tremellia Hobbs, activities director at the Brian Center/Cabarrus nursing home, cheers on her co-workers as they receive the covid-19 vaccine at the Brian Center/Cabarrus nursing home. (Aneri Pattani)

Early reports suggest nursing home residents are getting vaccinated at a higher rate than workers. A CDC analysis of more than 11,000 long-term care facilities found that in the first month of vaccinations, about 78% of residents got at least one dose, but only 38% of staffers did.

But some nursing home staffers say their reluctance is being misconstrued. Most are not saying they’ll never take the vaccine, but simply that they have concerns about such a new product. They understand it went through months of clinical trials, but what about possible long-term side effects, for instance? Or how did politics play into the development process? For communities of color, their historical mistreatment by the medical system can also factor into the decision.

“We should stop saying that people are just saying no,” said Dr. Kimberly Manning, a professor at Emory University School of Medicine who is participating in the Moderna vaccine trial. A Black physician herself, she has been speaking with many Black Americans about the vaccine and instead refers to people as “slow yeses.”

“We just are too impatient to get to the point where we let them get to their yes,” she said. “We’re like the used-car salesman. We’re just trying to close the deal.”

But human beings respond better to empathy and patience than to pressure, Manning said. She tries to ask people about their individual concerns and work from there. Sometimes it’s skepticism about the government’s intentions. Other times it’s worry about how the vaccine may interact with fertility treatments.

“It’s important to not lump anybody into a group and say ‘How dare you just not get vaccinated?’ because you’re a health care worker,” she said. “You’re still a person.”

Vials of the Moderna covid-19 vaccine thaw before they can be administered to residents and staffers at the Brian Center/Cabarrus nursing home. (Aneri Pattani)

Hobbs, at the nursing home, is not against immunizations in general, she said, and her decision has nothing to do with distrusting the medical system as a Black woman.

“I totally trust the science. I love Dr. Fauci,” Hobbs said. “My thing is the timing.”

She wants to wait and see how others who get the shots fare. In the meantime, Hobbs said, she’ll continue masking, physical distancing, and sanitizing — all of which have kept her covid-free for 10 months and which she hopes will continue to protect the residents, each of whom she knows by name and favorite activity.

Caitlyn Huneycutt, a certified nursing assistant at the center, also opted out of getting a shot — but for an entirely different set of reasons. She expects covid vaccinations will be mandated for health workers in the future, much like other immunizations. And she’ll get them then. But for now, she’s still weighing the risks.

She recently started a new medication and is not sure how it’ll interact with the vaccine. She doesn’t want to bring covid home to her 1-year-old daughter, but she’s also heard of people who received the vaccine and fainted or developed kidney infections. (The Centers for Disease Control and Prevention does not list either of these as common side effects for the two covid vaccines in use.)

“I want to make sure I’m going to be healthy if I take it,” Huneycutt said.

A CVS pharmacist prepares doses of the Moderna covid-19 vaccine during a clinic at the Brian Center Health & Retirement/Cabarrus nursing home on Jan. 14, 2021. (Aneri Pattani)
Josiah Howard (right) was one of two CVS pharmacists who administered the Moderna covid-19 vaccine to staff members and residents at the Brian Center/Cabarrus nursing home on Jan. 14, 2021. (Aneri Pattani)

Across the country, nursing homes are taking different approaches to persuade their staff to get vaccinated. SavaSeniorCare, which owns the Brian Center/Cabarrus, has offered cash to its 169 long-term care homes in 20 states to pay for gift cards, parties, or other incentives. For over a month now, the company has also been hosting weekly phone calls to educate staffers about the vaccine and making Sava doctors and pharmacists available to answer questions.

At least one nursing home chain in the U.S. announced it will require all employees to receive a vaccine, but most others, including Sava, have not yet done so.

Stewart Reed, the administrator for the Brian Center/Cabarrus, is hoping to lead by example instead.

Reed experienced the harsh reality of covid firsthand and was out of work for two weeks in the fall. In January, he was among the first in line to get the vaccine. For the rest of the day, he popped in and out of the dining hall where shots were being administered to thank staff members for doing their part.

In total, about 48% of staff members and 64% of residents at the center received their first dose of vaccine that day. The numbers are well below Sava’s goal of 90%, Reed said, but the pharmacists will return for two more clinics in the coming months.

“The people that didn’t get it [today] will see that the guys that got the shot are OK,” Reed said. “When the next clinic comes up, they will not hesitate to get their first shot. It ought to go much better.”

After Nearly 60 Years of Marriage, This Missouri Couple Stayed Together to the End

Arthur Kelley could barely raise his voice above a whisper last fall when he told a nursing assistant he never wanted his wife, Maggie, to be alone. After almost 60 years of marriage, five children and a lifetime filled with more victories than defeat, Kelley wanted to be there for his ailing wife, even if she didn’t know he was there.

He got to be there for her. But like so many other people who have died of covid-19, he died without his family.

Dementia had stripped Maggie Kelley of her memory, so her family had moved her into a nursing home in 2015. Arthur, who had received care for Parkinson’s disease at home, moved to the same facility in the St. Louis suburbs two years later to be closer to Maggie.

“It was a literal choice to go be there with Mom,” said their youngest son, Kevin Kelley. “He really desired to be there.”

Their parents shared meals, watched television and slept in the same room for three years. They were separated only once, when Maggie, 81, contracted an asymptomatic case of covid early in August.

“He protected her like Superman protects Lois Lane,” said their oldest daughter, Lisa Kelley-Tate. “That’s how he was with her.”

Arthur and Maggie Kelley celebrating an anniversary leading the Greater Faith Missionary Baptist Church. The couple died 30 days apart in 2020. A double funeral marked the end of nearly 60 years together as a married couple.(Derrick Varner)

Arthur, 80, would often ask when he could see his wife again.

“He wanted to make sure he didn’t pass before she did,” Kelley-Tate said a staffer at the nursing home told her. “It was his job to make sure he was there for her. Maybe he knew then that his time wasn’t going to be long.”

Maggie finished her quarantine and they reunited. But only briefly. She died of complications of dementia on Nov. 2.

That afternoon, Arthur held her hand as long as he could. When Kelley-Tate arrived, he was still holding on, so she took her mother’s other hand. She carefully painted Maggie’s nails red, her favorite color. But Arthur still wanted more time with Maggie.

“It took a while before he had me call the mortician to come pick her up,” Kelley-Tate recalled. “He said, ‘I want her here with me just a little longer.’”

Maggie and Arthur grew up together in Coffeeville, Mississippi, a small town about 90 miles south of Memphis, Tennessee. Maggie was the daughter of a teacher and a farmer. Arthur helped his family run its dry-cleaning business. He also learned to play the piano well enough to perform in juke joints and churches.

Their relationship bloomed in high school. Arthur took Maggie to the prom before they headed off to college. Maggie attended two historically Black colleges in Mississippi: what’s now known as Alcorn State University in Lorman and Rust College in Holly Springs. Arthur left the South for the Midwest, where he attended Southern Illinois University in Carbondale.

After their wedding on June 3, 1961, in Coffeeville — Maggie walked down the aisle in a lace dress with a sweetheart neckline; Arthur wore a white jacket and a wide grin — the couple decided to put down roots in St. Louis. Their lives revolved around the children they soon had, church and music. Maggie taught elementary school and took care of the children while Arthur studied speech pathology.

“They would always talk about how they would work together,” said their youngest daughter, Gina Kelley. “They worked as a team.”

The couple attended Central High School in Coffeeville, Mississippi, a small town about 90 miles south of Memphis, Tennessee. Maggie graduated with the class of 1956. Arthur earned his high school diploma in 1957. (Kelley Family)
Arthur Kelley became the pastor of Greater Faith Missionary Baptist Church in north St. Louis in 1977. Arthur and Maggie Kelley pose for a photo in the early 1990s at the church. (Erma Moore)

Arthur became the pastor of Greater Faith Missionary Baptist Church in 1977. He juggled life as a speech pathologist and minister, their children said. Maggie, who at this point was home raising the kids full time, established a routine for them that included prayer time, gospel music and home-cooked meals, including her beloved “Heath bar cake.”

Arthur and Maggie Kelley stayed dedicated to each other, in good times and bad. One of their toughest moments was the death of their 3-year-old son, Arthur Jr.

In their final years, both struggled with their health, but they never complained about their conditions. They leaned on their faith instead as he pushed through the challenges caused by Parkinson’s disease while her dementia progressed.

“At times, I said if my father had my mom’s body and my mom had my father’s brain we would be all good,” their son Kyle Kelley said.

After Maggie died, Arthur helped his children make funeral arrangements for her. He picked out her casket, and then he selected one for himself. Two of his children lifted him out of a chair so he could see the inside.

“He said, ‘I like that,’” Kelley-Tate recalled. “I said, ‘OK, we’ll keep that in mind,’ not thinking it would happen 30 days later.”

He too had contracted covid, one of the more than half-million nursing home residents nationwide to catch the contagious virus. Arthur wanted to attend his wife’s service, so his family decided to hold off on the funeral until he got better.

He never recovered. Exactly one month after Maggie’s death, he died in the covid ward of a nearby hospital. No family was allowed to be with him. A nurse called Kelley-Tate by video after he died.

But the family came together for what was now a double funeral with the caskets close to each other — the mauve one Arthur had picked for Maggie and the mahogany casket he had picked for himself.