Family caregivers are direct care workers. We are essential workers. We are unpaid home care workers doing the same job as hospital and nursing home staff, but without pay, labor protections or other benefits.

Adi Talwar

A person getting vaccinated at the South Bronx Educational Campus Vaccine Hubs located on St Ann’s Avenue.

In an attempt to salvage doses of the COVID-19 vaccine, hospitals are currently being investigated by the Department of Health for vaccinating ineligible public workers. With the New York Times reporting that unused doses of the vaccine were discarded, I strongly urge the NYS Department of Health, Governor Andrew Cuomo and Mayor Bill de Blasio to add family caregivers to the groups of essential workers who are eligible to receive the COVID-19 vaccine immediately.  

NYS employs just over 200,000 home care workers, who are currently eligible to receive the vaccination, but the 2.5 million family caregivers across the state have yet to be included for eligibility. While vaccinating home care workers makes good sense due to their exposure to multiple patients, 24 percent of family caregivers report caring for more than one person. I am one of these caregivers, over the years having cared for up to four older adults at one time. 

Family caregivers are direct care workers. We are essential workers. We are unpaid home care workers doing the same job as hospital and nursing home staff, but without pay, labor protections or other benefits. If we aren’t protected, many of those we care for could end up in nursing homes, where 40 percent of COVID-19 deaths nationwide have occurred and where care is costly, placing an additional and intense burden on an already strained health care system.  Protecting family caregivers, along with those they care for, is good public health. 

Family caregivers have been under increased pressure since the beginning of the pandemic and live in fear of bringing the virus home with them and to the people they care for. Given the huge number of family caregivers in New York State and the 2.4 billion hours of care valued at $31.3 billion contributed to the state each year, it is time we are acknowledged for the work that we do. Ensuring vaccination for family caregivers would be but one way to safeguard the lives of those whose contributions to the economy and health care system are enormous. It is also a good insurance policy for the state, to ensure that nursing home admissions do not rise at this dangerous time.

Family caregivers are all too familiar with the terrifying feelings about what might happen to those we care for if we get terribly sick or die before they do. I have been caring for my mother for 25 years, since she had an aneurysm rupture in her brain when I was 17. Unable to care for herself or direct her own care, her life would crumble without the daily assistance my husband and I provide. From personal care to skilled nursing tasks and care management, we do it all.

Family caregivers are essential workers, especially when access to formal essential workers becomes limited, as it has during the pandemic. The feeling of needing to stay healthy and alive so another person doesn’t suffer is an unbearable weight. Every trip to the doctor or grocery store could kill one or both of us. If we get sick, she will likely get sick too. If I die, and she doesn’t, she will be back in a nursing home, which I worked so hard to get her out of 20 years ago. This increased strain on an already overburdened system is one we should not risk by leaving family caregivers unvaccinated. And, given the high number of COVID-related deaths in nursing homes, they feel like a death sentence.

With a deadly pandemic swirling around us, illness and death is an ever-present reality. As the vaccine is rolling out, I am glad to know that my mother is eligible for a shot. She will be protected, but what about my husband and me? If we had to quarantine, due to exposure, she would require round-the-clock care, which would put an additional and costly strain on the health care system. We live with my mother to ensure she has a good quality of life, but if we aren’t protected, the uncertainty of our lives not only continues, but also increases. My mother needs us, our city and state needs us to care for her and our nation’s health care system would crumble without the unpaid work of the 53 million family caregivers throughout the United States. But who will care for us?

Maggie Ornstein, PhD, MPH is an expert on family caregiving and long-term care; she is a member leader of the NY Caring Majority and teaches public health and psychology at Sarah Lawrence College.

25 thoughts on “Opinion: New York’s Family Caregivers Should be Prioritized for the COVID-19 Vaccine

  1. Absolutely! As the sole caregiver for my mother with dementia, were I to become sick or be hospitalized, I would have absolutely no backup. Leaving us out is not surprising, but it’s really short sighted. Homeless elders, or those alone in their house and possibly unaware as to what to do, as their caregiver has suddenly been hospitalized creates even more problems for the state.

    I recommend we contact our state representatives

  2. 100% agree, I care for a developmentally disabled adult child (also not yet eligible for the vaccine) and have been helping to get groceries etc for my disabled mother. It is incredibly stressful to think about what will happen if I get sick.

  3. I am a family caregiver full time for my 99 year old mom with dementia and other serious issues. I kept her safe with me during the pandemic 11 months. I have been care-giving for her for many years. I feel left out when it comes to the vaccine. It angers me to see people getting the vaccine that aren’t health care professionals or first responders, not even taking care of anyone, going shopping, and having people over.
    Its not fair, I am so afraid of getting sick and bringing the virus into my house. I am isolated and I don’t go out or have anyone in. If I get sick, Mom will go into a nursing home. I am a prisoner in my own home to keep us safe. It is so hard, I am preforming nursing and working on line with tele -medicine from the doctors office. When Mom had a fall we had limited visits from a nurse sent from the hospital. I did the wound care. I can’t work at all but that is ok for now. We need family caregivers vaccinated. I can prove I am doing it. The doctors office can’t help me get a vaccine, they know what I am doing. We, family caregivers are the ones keeping the elderly out of nursing homes, lessening the burden on the health care system. We need to be vaccinated, we are saving vulnerable people from covid and helping to lessen the cases for the health care community. God bless all the caregivers both family and professional and keep them safe.

    • That is identical to my story . My mom is also 99 told it’s awful
      I am
      In tears all the time no help it’s awful
      Nancy kelley Boston ma

  4. Agree!!!! I am taking care of my mom who is 78 with stage 4 cancer, COPD and Emphysema. We have done everything we have been asked to do and then some to protect her from Covid. That means that I have had to give up my paid position and stay at home with her for 11 months now, ordering pretty much everything online except groceries and going for those only once a month and at odd hours to ensure limited exposure. We haven’t seen family or anyone. It’s been emotionally and physically draining but we have complied with everything. Here we are. She is eligible for a vaccine but Lord knows it is impossible to find a slot in New York State (and we are upstate). I finally did get a slot and she will be vaccinated this week. But I am not eligible because I am a home care giver that isn’t “employed” by anyone. How exactly is that right? I have sacrificed everything to comply with every mandate and request to keep us out of the hospital or nursing home. And simply because I am not “paid”, I am not eligible? With her condition, even with the vaccine, she is immunocompromised and they are “guessing” that the vaccine will only be 50% effective. So she is still at risk. If I am not vaccinated and bring it home to her, she could still end up in the hospital and die!!!! Technically, I probably am paid since without a job, she has to help financially with our bills at home with her retirement. But there is no paper trail to show “pay”…….I’m completely annoyed at how this entire process is going anyway – it’s a mess. And emailing the governor is like sending a wish into outer space and thinking it will somehow come true – DEAF EARS!!!!!!! Yet people who work in schools – many who are still working AT HOME – are eligible and I am not……..Something is very wrong with this system!!!!!!

  5. I agree. As a caregiver for my mom, 94, at night (she has aides during the day), I am responsible for her well-being. I do not understand the governor’s heirarchy of who qualified as some who work in the back office or accounting department of a medical practice and have no f2f contact with patients have been vaccinated.

    Something is wrong here. If the governor is blase about waiting to get vaccinated, then so be it.

  6. I am a senior gentleman who has been daily handling the deficits of my own brain injury disability for 23 years now. I understand the anxiety of fearing challenges worsening with age with any disability and the concerns about the physical and emotional burdens that would also place on added caregivers. Quite often, those caregivers are overtaxed family members. That’s just a harsh reality given the unaffordable costs of necessary professional medical care. Family care is the only way many people can make do.
    Dr. Ornstein makes an eloquent, superb, comprehensive case regarding how the covid-19 crisis phenomenally complicates these situations. Though I am not ‘in the shoes’ of such a scene, I know many who are. Before civid, they already were difficult enough, even if generally marked with much admirable unselfish, generous love and devotion; after covid, the stresses sound palpably life-tthreatening for all the involved parties. Dr. Ornstein’s article, and the responses here to it by some very conscientious caregivers, who deserve more than a passing pat on the back, offer a very unsettling and compelling case for pushing the government to immediately provide vaccination eligibility to these honorable caregivers. For my part, one thing I can do, like any other good citizen, to support this effort is contact the Mayor and Governor and my local representative and express my support. I compassionately hope that these leaders will well consider and affirmatively act on such evidence and recommendations as Dr Ornstein provides.

  7. I absolutely cannot believe that family caregivers are not eligible for the vaccination. This is totally irresponsible especially if a family caregiver has underlying health issues. I have an autistic son that works at Trader Joes and my husband works with OPWDD as a comm hab and they both have received their first shot (rightfully so) and are to receive their 2nd shot on schedule. I however, live in the same household – I am 62-1/2 years old (much closer to 65 than 55) – I have 7 certified conditions from the WTC – one is blood cancer and 4 which are respiratory conditions so this makes me extremely vulnerable. New Jersey has people who smoke on their list of people that can receive vaccines first – can I cross the state line because I would.

  8. I completely agree! I have been asking and searching for answers as to when family caregivers will be allowed to get the vaccine. I am a caregiver for my Dad who had a massive stroke in Nov 2019. I have been taking care of him since he came home from rehab last April, all through the pandemic. After days of searching, I finally got my parents appts for the vaccine last week at the NYC Armory. While there, I asked when family caregivers will be able to get the vaccine. Staff there sympathized with me, but could not give me an answer. It is so frustrating with seemingly nowhere to got for answers on this.

    I am PETRIFIED of the virus entering our home. I have not set foot in a grocery store or large store, gone to a family gathering or restaurant since March 2020. I will not risk my family’s health. Surely, this HAS to be a consideration? How can we get this addressed? Is there a petition or should we contact our state representatives?

    I am willing to help, write emails, etc. We just MUST be included in the next phase.

  9. I couldn’t agree more! My husband has stage 4 lung cancer; goes for immunotherapy, blood work and oncologist once/ month. Where would he be without me? He hais quarantined voluntarily because his body could not fight off the covid19 virus if he caught it. So I am the one going to pick up food, prescriptions, take out, bank, etcetera; also at risk taking him for appointments at MSkcc. I am a retired school teacher from NYC public schools; according to the news, I would have a better chance of getting the vaccine if I were in jail; should the caretakers start committing crimes to get vaccinated? Also saw people coming from Mexico and Canada to get vaccine; I don’t get it…

    • Forgot to mention what I went through to get my husband appointment which is not until mid February and second dose mid March; it’s sad that I cannot get vaccinated too. My husband will spend the last few months of his life quarantined with me; can’t go anywhere or have guests over in fear that we will contract virus. We just lost my father-in-law to Covid19; died in a nursing home and we never got to say goodbye or have the funeral he deserved.
      Because he was a Korean War veteran, we were limited to
      10 people at VA Cemetery after waiting 6 months for service. We had to exclude even his own grandchildren! That is the thanks he got for serving his country! My mother n law has been locked up in a room since March with no visitors allowed. The Gerwin has not mandated their staff to get vaccinated thereby creating their own pandemic! Positive cases every week are being brought in by the staff members who refuse to
      get vaccinated! They are punishing the senior residents and their families- haven’t seen each other since March! Chances are my husband will never get to see his mother again before he dies much
      like he never got to say good bye to his father! The facility was supposed to contact the family in a timely manner and give them time together one last time. Yet by the time my sister n law got there, she found her father dead in the bed! Who is going to do something about the nursing homes, stage 4 cancer patients and their caregivers?

    • Continued comment from Debby Aglio Forgot to mention what I went through to get my husband appointment which is not until mid February and second dose mid March; it’s sad that I cannot get vaccinated too. My husband will spend the last few months of his life quarantined with me; can’t go anywhere or have guests over in fear that we will contract virus. We just lost my father-in-law to Covid19; died in a nursing home and we never got to say goodbye or have the funeral he deserved.
      Because he was a Korean War veteran, we were limited to
      10 people at VA Cemetery after waiting 6 months for service. We had to exclude even his own grandchildren! That is the thanks he got for serving his country! My mother n law has been locked up in a room since March with no visitors allowed. The Gerwin has not mandated their staff to get vaccinated thereby creating their own pandemic! Positive cases every week are being brought in by the staff members who refuse to
      get vaccinated! They are punishing the senior residents and their families- haven’t seen each other since March! Chances are my husband will never get to see his mother again before he dies much
      like he never got to say good bye to his father! The facility was supposed to contact the family in a timely manner and give them time together one last time. Yet by the time my sister n law got there, she found her father dead in the bed! Who is going to do something about the nursing homes, stage 4 cancer patients and their caregivers?

  10. Thank you for this essay and advocacy. The responses are also very compelling. All these lovely people, working so hard and making great sacrifices to keep loved ones safe and cared for. I see this and want to help. Thank you all for the work you are doing.

  11. I agree. The simple fact that the lives of so many people are in the hands of daughters and sons who have chosen to take their parents into their home and serve as their sole caregivers is a an incredible story. And the simple fact that if anything happens to these people there is no one left to take care of this elderly and vulnerable population is a major problem that is not being addressed.
    I wholeheartedly agree that all caregivers are essential workers and should be on the list to receive the vaccine.

  12. Allowing paid caregivers to get vaccinated, but not the caregivers of people who can’t afford to pay for their care discriminates against both unpaid caregivers and the people for whom they care.

  13. This is such a whole in the priority system. I have been caring for my mother. With many doctors appointments, I have put myself at risk on a daily basis. I am unpaid. Someone who is paid has priority? That is just inequitable. Since this article has been written has there been any movement on this issue?

  14. Are uncompensated family caregivers eligible yet for the covid vaccine in any of the tri-state (NY, CT, NJ)? They provide essential, daily care and there would be an emergency gap in caregiving if the family caregiver gets Covid while waiting for a future vaccine phase.

  15. Agree. If I get covid I have no one to take care of my husband that has had a stroke. I risk my health every time I go to the store.

  16. There is a personal care aide qualification listed on eligibility for NYS – does that mean people who care for their family members who otherwise would need to pay for outside personal care aides?

  17. Personal care aides (PCA) are eligible, however unpaid family caregivers are not yet eligible for vaccination in NYS. Call your Assembly member, Governor Cuomo and NYS DOH Commissioner Zucker to demand that caregivers throughout the state be prioritized for vaccination.

    If 2% of family caregivers in NYC got sick or died from COVID-19, we’d need to find $3.6 billion to pay for nursing home care. Statewide, that number more than doubles. It would cause a crisis in long-term care.

  18. We are unpaid family caregivers because we are responsible and empathetic individuals. The State knows this.

    They understand we will do the right thing and sacrifice our time and personal schedules to keep our loved ones safe no matter how long it takes .

    This very fact is why we are left out of the top tiers for vaccination. In leaving us out of the early vaccination tiers the state taking advantage of our dependability and gambling our very lives and the lives and futures of our loved ones.

    I’ve written to the Governor’s office even before this OpEd was published. Received only an automated response.

  19. Agree completely. I take care of my daughter who was diagnosised with cancer a yr ago and we live with my parents who are both in theyre 70s. My mother was diagnosised with cancer in nov and receiving chemo and radiation and surgery now. My dads cancer is in remission. I would think they would be available bc of the direct contact. Im hoping it will change sooner than later

  20. I can’t simply go without leaving a comment. This post is a great read <3 Caring for young and elder family members and ourselves is difficult. The most important skill families can possess when they have a job, children and are caring for an elder family member in their home at these times is patience. Check this out Pandemic Caregiving for Elder Family Members

    Cheers,
    Eleanor

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