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

Yves here. This article discusses caregivers who are related to the elderly but oddly does not mention home health care aides. In Alabama, “health care providers” are eligible but most aides are not nurses. None of our aides have been able to get the vaccine and one has already gotten Covid!

Perhaps other states have more generous notions of what being a health care provider amounts to. But a second issue is that even if the definition were to include unlicensed caregivers, you quickly run up against the same issues you see in this article with respect to family members as caregivers. Alabama does not accredit or license home health care agencies but it could potentially extend vaccinations to anyone who was working for a firm that had been established at least a year ago. But many of the better aides wind up going solo and working directly for an elderly person or couple to have steadier work and higher pay.

This story also mentions that some elderly are too frail to leave home and get vaccinated.

By Judith Graham. Originally published at Kaiser Health News

Robin Davidson is a full-time caregiver for her father, Joe, who has congestive heart failure. Worry over whether she’d bring covid-19 to her father has been on Davidson’s mind daily. But recently he was vaccinated ― “an indescribable relief,” she says. (Kevin Parker)

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.”

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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  1. Terry Flynn

    This hits home really hard. I am middle aged, am prioritised for things like annual flu jabs because of previous heart condition that clearly on some clinical database is tagged as “may not be cured” (it isnt IMHO) plus fact I care for elderly mother who refuses to register as disabled for official purposes. Father too to some extent but he works…. Because he has to.

    What makes this ironic is that my first PhD student (when I worked in academia) studied well being among carers. Now I get to see it first hand. I come from science background so will accept any covid vaccine but I’m scared, given both official links to studies of people who had covid and were vaccinated plus the ongoing covid symptoms experienced by some (I suspect I’m one of them given that dad retooled to produce PPE early in 2020 and likely became a carrier).

  2. Shtucb

    I’m 53, my wife is 55. We provide care to my mother-in-law, 87, a somewhat demented cardiac and respiratory patient a year and a half out from a TAVR. Our state recently allowed our mother-in-law’s age group for Covid vaccinations, and my wife made a drive-through appointment for her that is coming up this week.

    Later the same day my wife made the appointment (which was the expected nightmare), she talked to our mother-in-laws cardiologist office about getting her mother vaccinated. The nurse then directed us to get vaccinated since we were family caregivers. My wife didn’t hesitate, and scheduled appointments for us as well. Our appointments are for the day after my mother-in-law, but we plan to all drive together for my mother-in-law’s appointment and explain the situation – we are hoping they might elect to do my wife and I a day early.

    I don’t know if we are pushing the limits of what is currently allowed by our state, and I honestly have been afraid to check. My mother-in-law is the single person in our bubble, and we take our responsibility to not infect her very seriously. We haven’t been in a store of any kind for over two months, or seen friends or other family. There is now a whole stack of medium-priority errands that we plan to defer until 2 weeks after the second dose.

    1. Terry Flynn

      Don’t know which vaccine your Healthcare provider has but here in uk even the “less perishable” Oxford vaccine has been given to people not yet officially called. My dad accompanied my mum for her vaccination. He was not technically in same high risk group as her but got vaccination too when they learnt his age etc. You may get “bumped up” by accompanying mother-in-law.

  3. Paul Harvey 0swald

    FWIW, here in Wisconsin parents of foster/adopted children with chronic/severe medical conditions were moved up to top priority for the vaccine on February 11th. The owner of the company I work for received a message from Family Services last Thursday and got the first shot on Saturday. His adopted toddler has several major medical conditions, including a compromised immune system. Good news, yes, but DFS didn’t alert the county health departments — so those people were caught off-guard. The patchwork process continues…

  4. chris

    Is this another case of complex requirements needing to be met lead to suboptimal outcomes? Would it be better if we just threw open the doors and had everyone who wanted a vaccine able to get one? I think that would really help in the case of caregivers and others.

    1. Arizona Slim

      I’m with you, Chris. A couple of miles away from me, a 24/7 vaccine center is about to open. It will be on the University of Arizona campus and will be operated by the State of Arizona. Link:

      Although going out to get a shot at 4 a.m. isn’t my idea of a good time, there are plenty of people who want it enough to wake up extra early. I say throw the doors wide open and get this vaccination thing done.

      1. chris

        Glad to hear my old home is trying to do its best by the citizens. Where I live now we’re constrained by a small number of vaccines. But I’m not sure where that constraint is coming from. Interviews with clinicians have said that they don’t recommend a practice where vaccine doses sit around unused. I can agree with that from a simple storage perspective, especially this time of year, where a power outage could kill a lot of doses by accident. It feels like we should be able to roll out this vaccine program more efficiently. But I don’t understand enough about what’s going on to say whether there’s anything more than a feeling behind that statement.

  5. DSB

    “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.”

    This is absolutely an issue, but it is an issue people like Carol Levine should have no voice in addressing. Every constraint she adds to the definition of caregiver for vaccination makes the process more complicated. It would slow the process for everyone. Complicated processes fail, not sometimes, not often, but always.

  6. Dave in Austin

    I am profoundly moved by the boomarang children/caregivers. Our society denies death. And that means that the decline remains unmentionable. But eventually push comes to shove… and, as always, the women step up to the plate most often. I’ve never met one who afterwards regretted the decision.

  7. Fern

    The problem is that you can’t prioritize everyone. There are about 53 million seniors over 64 and according to this article, there are 53 million caregivers. Prioritizing caregivers would mean making the vulnerable seniors wait longer. A few seniors might be totally bedridden, but that’s a small minority. Wouldn’t a better solution be to distribute more vaccines through the local pharmacies, and to save those slots for seniors and others with mobility problems until seniors are vaccinated?

    Most countries are prioritizing vaccinations in order of risk of dying. Only Russia and the United States seem to be focussing on younger, healthier workers at a lower risk of dying.

    The problem we have is that the CDC seems incapable of drawing the line, which you have to do if you are going to set priorities. They have designated 83 million people as medical and essential workers.
    To put this in perspective, the entire full-time workforce is approximately 125 million. So the number of workers singled out for priority equals 2/3 of the full-time workforce. And even when it comes to medical workers, the UK has designated half as many on a per-capita basis. I know that in my state, massage therapists, billing clerks, podiatrists’ receptionists, and psychologists working at home all qualify as medical workers who are first in line.

    Similarly for those with underlying medical conditions. The CDC has designated 110 million people between ages 16 and 64 as having “high-risk conditions” that need priority, or about 36% of the entire population. By way of comparison, the UK has designated 2.2 million people as “clinically extremely vulnerable”, needing to be prioritized equally with or above some seniors, or only 3.3% of the population. Every time we prioritize someone from a group less likely to die of covid, we are delaying the vaccination of someone more likely to die of covid.

    Why not just go down the list in order of risk of dying if covid is contracted, down to age 50 (after truly front-line medical workers), the way most countries do? 95% of deaths are people over 50. The vast majority of Black and Hispanic deaths are people over 50. Everyone will be able to be vaccinated this summer, but in the meantime, it’s the seniors who are dying.

    1. Yves Smith Post author

      You have only 60% at most of the people who are eligible for vaccines willing to get them now. You have 22% to 27% who will never get them, and depending on the survey, another 20% to 30% who are in wait and see mode, they want more time in use before they’ll get vaccinated. Of our four aides, no one is all that interested in getting the vaccine soon. Two are black and I think they share the widely-held reservations in the black community about medical experimentation. I anticipate they’ll eventually get them, emphasis on “eventually”.

      Our IM Doc, based on his patient mix, thinks once the initial demand is satisfied, we’ll have more surplus than the press would have you believe. You already see in Memphis lots of empty vaccination slots.

      1. Fern

        I would agree with you if they had opened it up to people over 50 and there still weren’t enough takers. At this point, my friends who are 60-65 don’t qualify while a huge slew of young workers do. Yet according to the study I link to below, a 65-year-old has roughly 140 times the chance of dying if they contract covid than does a 25-year-old.

        I have a 63-year-old friend who was a kidney donor to her 65-year-old husband. He was able to get vaccinated, but he’s immune suppressed so it’s not clear how well it will work. Yet it appears that private nannies can now get vaccinated as “child care workers” in California and she can’t. We’ll exhaust the people over 50 and the truly medically vulnerable soon, but we’re nowhere near there yet.

    2. Kate

      I very much agree with you. So many WFM friends in their 30’s, for example, being vaccinated in California, psychologists, etc. Also food-adjacent people who are by no means public-facing. I am 63, have 3 young adults living at home with me, which I would certainly think increases my exposure risk. Too many hair-splitting qualifications.

      Inoculations should simply be determined by absolute mortality risk, I believe. Of course, I am trying to hold out for the Johnson & Johnson shot myself.

      1. anonymous

        I am your age and share your concerns about the fairness of vaccine distribution. We 63-year olds do not belong in the same risk group as much younger adults. Paul Offit twice lately, on both TWIV and JAMA’s Conversations with Dr. Bauchner, said that 92% of the deaths are in those above age 55. My 59-year old sister, who needs to work outside the home and cares for our 92-yo memory- and mobility-impaired mother in the same household, is one of those who cannot get vaccinated yet in her state. If all vaccine is being supplied by the federal government, I do not see why distribution to the states cannot be conditional upon vaccination according to uniform national eligibility guidelines. Lawyers, should qualification for vaccination really be up to the individual states?

  8. phichibe

    My friend’s elderly parents were driven recently to get the vaccine by their grandson, and my friend literally ten minutes ago told me that when they got there their grandson was vaccinated because he was his grandparents’ caregiver. This was is Illinois but I’d strongly suggest people who have elderly relatives living with them and for whom they care should accompany their elder(s) to the vaccine clinic and ask if they can be vaccinated then and there. Hopefully this won’t be unfair to individuals who are already registered and waiting who are in the higher priority groups but we absolutely need to care for the caregivers as well. Of curse, the real solution is mass vaccine production, which is now on Biden. Fingers crossed he’ll do well, otherwise we may see the orange horrow holding rallies that are themselves super-spreader events to attack the Biden administration’s and any future shortcomings on Corona, the economy, etc. Oiw.


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