“It was like she was a toddler again.” The struggle of caring for a loved one with long COVID
The Pierce family took every precaution to keep themselves safe from COVID-19. “We were really careful about where we went, who we saw, and what we did—always wearing masks, social distancing and hand washing,” says Sarah Pierce, who lives in Worthing in West Sussex, England. Then, in spring 2021, schools across England began to reopen.
With some hesitation, Sarah—a teacher herself—sent both her son, Henry, and her daughter, Victoria, back to their classrooms. On July 23, 2021, Victoria’s 12th birthday, both children contracted COVID. And soon, Sarah did too.
She and Henry recovered relatively quickly, but Victoria’s symptoms persisted for weeks, then months. “After frequent recurring incidents of nausea, tummy aches, headaches, and chest pain, and numerous trips to the COVID testing center and our [general practitioner], she was finally shown a list on the NHS [National Health Service] long COVID page and asked how many of these symptoms she had,” Sarah says. Victoria had 19 symptoms.
Nearly three months after first testing positive, Victoria’s doctor diagnosed her with long COVID.
Understanding long COVID or post-COVID conditions
Long COVID officially became a disability protected under the Americans with Disabilities Act (ADA) in July 2021—a year and a half after the first case of COVID-19 reported in the U.S. Now, the American Medical Association (AMA) estimates that anywhere between 10% and 30% of those who develop COVID will deal with long COVID symptoms (also known as post-COVID symptoms or long haul COVID).
To give you a better idea of the scale of disability we’re talking about here, Penn State College of Medicine estimates that around 236 million people who have been diagnosed with COVID-19 across the globe will experience post-COVID symptoms. Meanwhile, the disability has affected somewhere between 7.7 and 23 million people living in the States.
As for stats on long-haul caregivers, though? Researchers don’t yet have a figure that represents the number of folks now acting as lifeline for their loved ones. While long COVID takes an indisputably large toll on the family unit, the number of people providing support isn’t readily available. That said, Nisha Viswanathan, MD, director of the long COVID program at UCLA, has seen the effects of long COVID-caregiving first-hand.
“Not only am I seeing patients who are requiring disability due to their long COVID, but because of their severe symptoms—severe fatigue, brain fog, inability to drive, inability to remember all their correct medications—their significant others are needing to either cut back on either their workload or request time off,” she says.
To add frustration to an already painful situation, the medical community is just beginning to piece together what long COVID is in the first place. “There’s no clear diagnosis of what long COVID is yet,” says Viswanathan. “There’s actually quite a bit of research they’re doing now to give an actual definition, but at this point, it’s more of a diagnosis of exclusion: We rule out a lot of other conditions and we see that patients are having these persistent symptoms after they’ve had their COVID infection.”
The disability has over 200 symptoms that may include anything from shortness of breath to brain fog. There are no approved treatments for long COVID to date. Meaning, doctors have to focus on alleviating one or two long COVID symptoms to better a patient’s overall quality of life.
While medical researchers look for answers, much of the caregiving burden falls upon loved ones. And, as any long COVID caregiver will tell you, the path back to life pre-COVID isn’t linear.
Caring for a child with long COVID
Before October 2021, Victoria served as Girl Guide (similar to a Girl Scout), baked, played the cello, and took Mandarin lessons after school. “On the threshold of her teenage years she was enjoying going out with her friends and hanging out after shielding for 18 months,” says Sarah, referring to the lockdown.
Victoria’s life couldn’t look more different now: She’s housebound for the most part due to an ongoing barrage of post-COVID symptoms (including extreme fatigue, chest pain, heart palpitations, and loss of taste and smell). Victoria’s school provides an alternate, home-based education for her where she meets with her teachers via Zoom. Sarah—a single mother—is constantly trying new ways to show up for her daughter. “It was like she was a toddler again, needing support with personal care, preparing food and meals,” says Sarah. Every day, she encourages Victoria to stay connected with her friends. To get enough sleep. To shower.
Sarah can’t be by Victoria’s side 24/7, though. She’s still working part-time as a teacher to provide for her family. “Whilst I work locally and can be home in 10 minutes, it’s still a worry that’s in the back of my mind the whole time. When I get home, I go straight to check in on Victoria, how she is, making sure she’s up to date with medications, and then getting Henry food and taking him to water polo training,” says Sarah. She adds that, meanwhile, she’s trying to keep Henry’s life as normal as possible.
On top of all of this, Sarah is collaborating with Long COVID Kids—a U.K.-based community and charity organization that helps families around the world dealing with long COVID. “There are no cures yet, so people in the long COVID community are sharing their stories on social media and in groups like Long COVID Kids in the hopes of gathering important information here and there that can make life a little more bearable while they wait for a medical breakthrough,” says Michelle Fishburne, founder of Who We Are Now: a journalism project chronicling life during the pandemic.
Sarah also tries to carve out special moments with her daughter whenever she can. “On weekends, I try to get Victoria out of the house. We have borrowed a wheelchair from a friend after hearing how much it has benefitted other young people in the Long COVID Kids group,” says Sarah. “When the weather is nice, I take her to the seafront and get her a bit of fresh sea air, or take her to the local shops to get some art bits for her.”
Caring for a parent with long COVID
Amy, a 50-year-old living in San Jose, Calif., who asked to be identified by her first name to protect her privacy, invited her mother to come and live with her eight years ago after her dementia became debilitating.
In early 2020, she and her mother contracted an illness consistent with COVID-19 (although tests didn’t exist yet). “My [COVID symptoms] started with bad right ear pain and sound distortion a week before breathing became difficult. Mom’s started with a painful red right eye, an uncomfortable itchy painful hive-like rash on her tummy, and a coughing and sneezing attack that lasted a few hours and disappeared completely,” says Amy. Access to a nebulizer—a device used to turn liquid medicine into a mist that you can inhale through a mask—kept them both out of the hospital. But as time went on, her mother’s symptoms persisted and evolved into long COVID.
“Mom didn’t have much appetite, stopped feeding herself, and stopped speaking, in addition to eye redness …. general weakness and confusion, skin rashes, and what looked like come-and-go frostbite on her legs and feet,” says Amy.
Two years later, Amy’s mother’s recovery has been incremental. As her caregiver, Amy has made the decision to keep her away from invasive procedures, but she’s still shepherding her mom from doctor to doctor whenever someone has new, non-invasive ideas about what could help. With acupuncture and time, her mom is now painting, holding her own utensils, and speaking (and singing) once again.
Still, Amy—who left her own career shortly after her mother moved in to become her full-time caregiver—spends a great deal of time assessing her mother’s needs in the entangled web of long COVID and dementia. Every day looks different, she says. “The lingering effects of [long] COVID add a twist to the effects of dementia, which is supposed to be a slow steady decline. Sometimes her hands and words work and sometimes they are gone, so we have to notice, be patient, use workarounds that help in the moment, and wait without expectation for functions to return,” explains Amy.
While it’s difficult to fully separate the symptoms of long COVID and the symptoms of dementia, Amy and her mother’s doctors have arrived at a tentative way to differentiate the two. While dementia symptoms tend to present as a consistent degradation of memory, motor skills, balance, and aphasia (problems with recalling words and speaking), long COVID symptoms come and go in waves. ”She had some problems speaking [before], but not to the level brought on by long COVID. There was a point where she wasn’t even answering questions; she would just look at me,” Amy says.
Amy, meanwhile, is still navigating her own long COVID symptoms, including a loss of hearing in her right ear, skin rashes, dizziness, breathing issues, and nausea. Caring for her mother on days when she wakes up feeling particularly ill is a struggle, but Amy has found ways to make it work. “If I’m feeling bad, I’ll just let her know. I’ll say, ‘Mom, I’m really dizzy. I can barely stand up.’ And she’ll say, ‘That’s okay, sweetie. Take your time,’ because she’s just in the next room,” says Amy.
When Amy’s symptoms are particularly excruciating, she tells herself to just do one thing—just move her hand or just keep her eyes open. And slowly, little by little, she’ll feel well enough to get out of bed and care for her mother.
“It is a careful balance between betrayal and trust: We trust our body for so many things, but it doesn’t have a lot of ways to tell us what it needs,” says Amy. “So we try to listen carefully and go slowly in case the body cannot perform as we expect. We can’t take the betrayal personally, but we can see how to be more supportive—and move forward.”
A look into the future for long COVID caregivers
While there’s no end in sight for long COVID caregivers, there is hope to be found in community. Long COVID Kids and Survivor Corps offer caregiver toolkits, webinars, and other resources for the families of people living with long COVID. Meanwhile, Long COVID Alliance goes so far as connecting people to online support groups to alleviate the isolation that often comes with acting as a caregiver.
“The silver lining is finding Long COVID Kids and the support they have been able to offer and the support I’ve been able to give,” says Sarah. “Without our little group shouting loudly for the care our children deserve, I don’t know if I would have got this far.”
As Sarah and Amy both mentioned, part of sustaining the long and winding road back to “normal” is simply finding small moments of joy with your loved one. Whether that’s painting, singing, or feeling the sea breeze against your skin.