Five years ago, I sat in a hospital lounge as a nurse laid out everything I as a caregiver would need to feed my husband intravenously: a bag of fluid called total parenteral nutrition, a vitamin solution, syringe, pump, a new 9-volt battery, a quarter for opening the battery chamber, and tiny alcohol wipes. She demonstrated the fussy, time-consuming process of hooking up the whole thing to my husband’s central line.
Then she handed me a 20-page pamphlet detailing the procedure and I was on my own.
At the time, my husband, Brad, had been hospitalized for more than four months after a stem cell transplant that was plagued by complications for relapsed, aggressive lymphoma. He was unable to eat much by mouth, so he relied on IV nutrition, night after night, to survive at home.
Over the years of Brad’s medical ordeal, I have administered IV antibiotics, flushed and sterilized port lines, checked blood sugar, given shots of Neulasta (a booster shot for immunity after chemotherapy), and much more. My shock and anger at suddenly being expected to be a bedside nurse faded, and handling needles and central lines became routine.
Brad no longer needs this level of care, but his immune system is still suppressed and he is chronically ill. We’re now mired in the long wait for Covid-19 vaccines which, in my state, California, could take several confusing, frustrating months.
The Covid-19 vaccines are miracles of fast-moving science, but Covid-19 vaccination has so far been a slow grind. With daily deaths in the U.S. continuing to number in the thousands and the country barreling toward the devastating figure of half a million deaths, we need all hands on deck to turn vaccines into vaccinations.
The gigantic systems that must figure out how to get shots into arms — U.S. health care and the federal government — are better known for ponderous bureaucracy than nimble pivots and stopgap solutions. As I’ve watched the delays, I’ve thought often of the times I was deputized to give my husband care during the medical ordeal that left him chronically ill.
I could give him the shot, I keep thinking.
Every day, family caregivers like me, with no medical experience, volunteer — or are voluntold — to provide care that a generation or two ago would have been administered only by a nurse. According to a 2020 AARP survey, there are more than 50 million family caregivers in the U.S. We represent a resource that, if deployed, could help get vaccines into arms, the well-known “last mile” problem.
In some ways, caregivers have been sidelined during the pandemic. Because of justified concerns about infection, hospitals have had to ban family caregivers from hospital visits. When we went on lockdown, I worried about my husband’s immune suppression, but briefly consoled myself with the idea that if he did get sick, I would know how to advocate and care for him, given my prior experience. Then I soon realized I wouldn’t even get in the door.
Of course, the slow pace of vaccination has many causes: dose shortages, the negligence of the Trump administration, the ethical questions surrounding who to prioritize, and personnel shortages.
What if the valuable experience of each and every caregiver could be applied to the most critical effort of this moment, vaccination?
Caregivers, many of us already trained in basic at-home care and used to cutting through health-care bureaucracy, could pitch in to speed up vaccinations. Deputizing caregivers to give shots at home could ease the enormous, yearlong strain on the medical and public health systems while also providing a safer, more accessible vaccination method for vulnerable seniors, those with limited mobility, and immune-compromised people like my husband, who shouldn’t be waiting for hours in mass clinics.
The Biden administration’s strategic plan to combat the pandemic promises federal leadership and faster action on vaccination nationwide, bringing much-needed hope in a dark time. Reports indicate the administration will deploy the National Guard and the Federal Emergency Management Agency to aid the effort.
I hope it will also explore tapping ordinary citizens. In addition to finding ways to use caregivers, we should consider mass volunteer efforts for both direct care and support. The United Kingdom, for instance, started a volunteer corps in which not only retired doctors but also teachers and other laypeople are giving shots. In Connecticut and Alberta, veterinarians have been deputized. It’s time to extend such efforts more broadly.
Vaccination campaigns in regions beset by childhood diseases have long relied heavily on volunteers for last-mile delivery. My sister-in-law recently told me that, at age 17, she went on a volunteer summer program to vaccinate kids in Ecuador. She and her fellow teens practiced, first on oranges and then on each other, with syringes filled with saline. I’m not proposing we send out needle-wielding minors, even in a crisis as deep as the present one, but the moment cries out for innovative solutions.
Both the individual family care I am expected to provide for my husband and the broad tragedies of the pandemic reflect the profound strains on American health care. But shifting higher-level care tasks to family caregivers, hard though it is on individuals, represents innovation — a workaround to save lives despite systemic challenges — and has given millions of Americans experience that could help meet the moment.
With the availability of Covid-19 vaccines, the end of the pandemic is tantalizingly close. Let’s use every resource we have to get there, including an often-overlooked one: caregivers.
Kate Washington, a journalist based in Sacramento, Calif., is the author of “Already Toast: Caregiving and Burnout in America” (Beacon Press, March 2021).