Robin Davidson walked into the lobby of the Methodist Hospital in Houston, where her 89-year-old father, Joe, was being treated for a flare-up of congestive heart failure.
Before her, a line of people were waiting to be vaccinated against COVID-19. It was scary knowing I couldn’t fit into that line, said Davidson, 50, who is devoted to his father and generally looks after him full time. If I got sick, what would happen to him?
Tens of thousands of middle-aged sons and daughters caring for older parents with serious illnesses but too young to qualify for a vaccine themselves are also terrified of getting sick and wondering when they can be protected from the coronavirus.
Like helpers and other nursing home workers, these caregivers regularly administer medication, monitor blood pressure, cook, clean, and help parents wash, dress and use the toilet, among other responsibilities. But they do it in apartments and houses, not in long-term care facilities, and they don’t get paid.
In sum, they are essential healthcare workers, caring for very ill patients, many of whom are entirely dependent on them, some of whom are dying, said Katherine Ornstein, healthcare expert and associate professor of geriatrics and palliative medicine. at Mount Sinais School of Medicine in New York. Yet we neither recognize nor support them as such, and it is a tragedy.
The distinction is crucially important because healthcare workers have been given priority to get vaccinated against COVID, as well as vulnerable seniors in nursing homes and assisted living facilities. But family members caring for equally vulnerable elderly people living in the community are clustered with the general population in most states and may not get vaccinated for months.
The exception: Older caregivers may be eligible for vaccines because of their age, as states approve vaccines for adults aged 65, 70, or 75 and over. A few states have moved family caregivers into phase 1a of their vaccine rollout, the top priority level. Notably, South Carolina did so forfamilies caring for medically fragile children, and Illinois has given this designation to families who care for parents of all ageswith a significant handicap.
Arizona is also trying to accommodate caregivers who accompany older residents to vaccination sites, Dr Cara Christ, director of the state health services department, said on Monday.during a Zoom briefingfor President Joe Biden. Complete data on states granting priority status to informal caregivers is not available.
Meanwhile, the Department of Veterans Affairsplans announcedoffer vaccines to people participating in its comprehensive assistance program for natural caregivers. This initiative provides financial allowances to family members caring for seriously injured veterans; 21,612 veterans are registered, including 2,310 aged 65 or older, according to the VA. Family members can be vaccinated when the veterans they care for become eligible, a spokesperson said.
The current pandemic has amplified the importance of our caregivers who we recognize as valuable members of veteran health care teams, Acting Under Secretary of Health Dr Richard Stone, VA said in the announcement.
About 53 million Americans are caregivers, according to aReport 2020. Almost a third devote 21 hours or more each week helping the elderly and disabled with personal care, household chores, and nursing-type care (giving injections, treating wounds, administering oxygen, etc.). An estimated 40% provide high-intensity care, a measure of complex and time-consuming care demands.
This is the group that should be getting vaccines, not the caregivers who live at a distance or do not provide direct and convenient care, said Carol Levine, senior researcher and former director of the Families and Health Care project at the United Hospital Fund . At New York.
Rosanne Corcoran, 53, is one of them. Her 92-year-old mother, Rose, with advanced dementia, lives with Corcoran and his family in Collegeville, Pa., On the second floor of their home. She hasn’t come down the stairs for three years.
I couldn’t take him somewhere to get the shot. She has no endurance, said Corcoran, who arranges for doctors to make home visits when her mother needs attention. When she called their doctor’s office recently, an administrator said they did not have access to vaccines.
Corcoran said she does everything for her mother, including bathing her, dressing her, feeding her, giving her medication, monitoring her medical needs and meeting her emotional needs. Before the pandemic, a companion would come five hours a day, offering some relief. But last March, Corcoran let go of the companion and took care of all of his mother’s care.
Corcoran wishes she could get the vaccine sooner rather than later. If I got sick, God forbid, my mother would end up in a retirement home, she said. The thought of my mom having to get out of here, where she knows she’s safe and loved, and go somewhere like this hurts my stomach.
Although cases of COVID are declining in nursing homes and assisted living centers as residents and staff receive vaccines, 36% of deaths during the pandemic have occurred in these settings.
Maggie Ornstein, 42, a care expert who teaches at Sarah Lawrence College, has provided intensive care to her mother, Janet, since Janet suffered a devastating brain aneurysm at 49. For the past 20 years, her mother has lived with Ornstein and her family in Queens, New York.
In a recentopinion pieceOrnstein urged New York officials to recognize the contributions of family caregivers and reclassify them as essential workers. I used to be abandoned by a system that should help us and our loved ones, she told me in a phone conversation. But the utter negligence on our part during this pandemic is shocking.
Ornstein estimated that if even a quarter of New York’s 2.5 million family caregivers fell ill with covid and were unable to continue, state nursing homes would be overwhelmed with demands from desperate families. We don’t have the infrastructure for that, and yet we pretend that this problem just doesn’t exist, she said.
In Tomball, Texas, Robin Davidsons’ father was independent before the pandemic, but he began to decline as he stopped going out and became more sedentary. For nearly a year, Davidson drove every day to his 11-acre ranch, 5 miles from home, and spent hours looking after himself and maintaining the property.
Every day when I arrived I wondered if I was careful enough [to avoid the virus]? Could I have picked up something from the store or got gas? Am I going to be the reason he dies? My constant closeness to him and my care for him is terrifying, she said.
Since his father’s hospitalization, Davidsons’ goal has been to stabilize him so that he can enroll in a clinical trial in congestive heart failure. Medication for this condition no longer works for him, and fluid retention has become a major problem. He is now at home on the ranch after spending more than a week in the hospital and received two doses of the vaccine, indescribable relief, Davidson said.
Out of the blue, she received a text from the Harris County Health Department earlier this month, after putting herself on a vaccine waiting list. The vaccines were available, he read it, and she quickly signed up and got an injection. Davidson ended up being eligible because she has two chronic health conditions that increase her risk of COVID; Harris County does not officially recognize family caregivers in its vaccine allocation plan, a spokesperson said.
Kaiser Health News is a non-profit news service covering health issues. This is an independent editorial program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.
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