The Pierce family has taken every precaution to protect themselves from COVID-19. “We were very careful about where we went, who we saw and what we did – always using masks, social distancing and washing our hands,” 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 – herself a teacher – sent both her son Henry and daughter Victoria back to their classrooms. On July 23, 2021, Victoria’s 12th birthday, both children contracted COVID. And soon Sarah too.
She and Henry recovered relatively quickly, but Victoria’s symptoms lasted for weeks and then months. “Following frequently recurring incidents of nausea, abdominal pain, headache and chest pain and numerous visits to the COVID testing center and our [general practitioner]she was eventually shown a list from the NHS [National Health Service] long COVID page and asked how many of these symptoms she had,” says Sarah. Victoria had 19 symptoms.
Almost three months after the first When she tested positive, Victoria’s doctor diagnosed her with a long COVID.
Understanding long COVID or post-COVID conditions
Long COVID officially became an Americans with Disabilities Act (ADA)-protected disability in July 2021 — a year and a half after the first case of COVID-19 was reported in the United States. Now, the American Medical Association (AMA) estimates that somewhere in between 10% and 30% of those who develop COVID will struggle with long-term COVID symptoms (aka post-COVID symptoms or long-distance COVID).
To give you a better idea of the level 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 around the world have post-COVID symptoms will exhibit. The disability now affects between 7.7 and 23 million people in the United States.
But as for the stats on long-haul caregivers? Researchers don’t yet have a figure that represents the number of people who are now acting as lifelines for their loved ones. While long COVID is taking an undeniably heavy toll on the family unit, the number of people providing support is not readily available. However, Nisha Viswanathan, MD, director of the long COVID program at UCLA, has seen the impact of long COVID care first hand.
“Not only do I see patients who need disability because of their long COVID, but because of their severe symptoms — severe fatigue, brain fog, inability to drive, inability to remember all of their proper medications — their significant other needs to be cut either their Pick up workload or request time off,” she says.
To add to the already painful situation, even more frustrating, the medical community is only just beginning to figure out how long COVID is. “There is still no clear diagnosis of how long COVID lasts,” says Viswanathan. “Actually, they’re doing quite a bit of research now to give an actual definition, but at this point it’s more of a diagnosis exclusion: We rule out many other conditions and see that patients have these persistent symptoms after they had their COVID infection.”
The disability has over 200 symptoms that can range from shortness of breath to brain fog. To date, there are no approved treatments for long COVID. That means doctors need to focus on relieving a long-standing COVID symptom or two to improve a patient’s overall quality of life.
As medical researchers seek answers, much of the burden of care falls on family members. And as any long COVID caregiver will tell you, the road back to pre-COVID life isn’t linear.
Caring for a child with long COVID
Prior to October 2021, Victoria served as a Girl Scout (similar to a Girl Scout), baked, played the cello and took Mandarin classes after school. “On the cusp of her teenage years, she was enjoying going out with her friends and hanging out after 18 months in isolation,” says Sarah, referring to the lockdown.
Victoria’s life couldn’t be more different now: she’s housebound for the most part due to an ongoing spate of post-COVID symptoms (including extreme fatigue, chest pain, heart palpitations and a loss of taste and smell). Victoria’s school offers her an alternative education at home, where she meets with her teachers via Zoom. Sarah — a single mom — is always trying new ways to show up for her daughter. “It was like she was a toddler again who needed help with personal hygiene, food preparation and meal preparation,” says Sarah. Every day she encourages Victoria to keep in touch with her friends. To get enough sleep. Take a shower.
However, Sarah cannot be by Victoria’s side 24/7. She still works part-time as a teacher to provide for her family. “Even though I work locally and can be home in 10 minutes, it’s still a concern that’s on the back of my mind all the time. When I get home, I immediately check on Victoria, make sure she’s up to date on her medication, then get Henry some food and take him to water polo practice,” says Sarah. She adds that in the meantime, she’s trying to keep Henry’s life as normal as possible.
Additionally, Sarah works with Long COVID Kids – a UK-based community and charity helping families around the world deal 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 hopes of gleaning important information here and there that can make life a little more bearable while they are waiting for a medical breakthrough,” says Michelle Fishburne, founder of who we are now: a journalistic project chronicling life during the pandemic.
Sarah also tries to create special moments with her daughter whenever she can. “At the weekend I try to get Victoria out of the house. We borrowed a wheelchair from a friend after hearing how much it has benefited other young people in the Long COVID Kids group,” says Sarah. “When the weather is nice, I take her to the sea and get her some fresh sea air, or I take her to the local shops to get some art for her.”
Caring for a parent with long COVID
Amy, a 50-year-old living in San Jose, California, 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 a COVID-19-like illness (although there were no tests yet). “My [COVID symptoms] started a week before breathing became difficult with severe pain in right ear and distortion of sound. Mom’s started with a painful red right eye, an uncomfortable itchy, painful rash on her stomach, and a fit of coughing and sneezing that lasted a few hours and went away completely,” says Amy. Access to a nebulizer — a device used to turn liquid medication into a mist you can breathe through a mask — kept them both away from the hospital. But over time, her mother’s symptoms persisted and evolved into a long COVID.
“Mom didn’t have much of an appetite, stopped feeding herself and stopped speaking, in addition to red eyes…. general weakness and confusion, rashes and frostbite on her legs and feet that looked like,” says Amy.
Two years later, Amy’s mother’s recovery was gradual. As her caregiver, Amy has made the decision to keep her away from invasive procedures, but she still accompanies her mother from doctor to doctor whenever anyone has new, non-invasive ideas on what might help. With acupuncture and time, her mother is now painting, holding her own utensils, and speaking (and singing) again.
Still, Amy, who gave up her own career to become her full-time carer shortly after her mother moved in, spends a lot of time assessing her mother’s needs in the tangled web of COVID and dementia. Every day looks different, she says. “The ongoing effects of [long] COVID adds a twist to the impact of dementia, which is said to be a slow, steady decline. Sometimes their hands and words work and sometimes they’re gone, so we need to notice it, be patient, use workarounds that help for the moment, and wait without expectation for the features to return,” explains Amy.
While it’s difficult to fully separate the symptoms of a long COVID and the symptoms of dementia, Amy and her mother’s doctors have found a tentative way to distinguish the two. While symptoms of dementia usually present as persistent deterioration in memory, motor skills, balance, and aphasia (problems remembering words and speaking), long-term COVID symptoms come and go in waves. “She had some trouble speaking [before], but not at the levels provoked by long COVID. There was a point where she didn’t even answer questions; she would just look at me,” says Amy.
Amy, meanwhile, is still navigating her own lengthy COVID symptoms, including hearing loss in her right ear, rashes, dizziness, breathing problems and nausea. Taking care of her mom on days when she’s feeling particularly ill is a struggle, but Amy has found ways to make it work. “If I’m feeling bad, I’ll just tell her. I’ll be like, ‘Mom, I’m really dizzy. I can hardly get up.’ And she’ll say, ‘That’s okay, honey. Take your time because she’s in the next room right now,” says Amy.
When Amy’s symptoms are particularly distressing, she tells herself to just do one Thing-only move your hand or only keep your eyes open. And slowly, little by little, she will feel comfortable enough to get up and take care of her mother.
“It’s a careful balance of betrayal and trust: We trust our body about so many things, but it doesn’t have a lot of ways of telling us what it needs,” says Amy. “That’s why we try to listen carefully and go slow in case the body can’t function the way we expect it to. We can’t take the betrayal personally, but we can see how we can be more supportive – and move forward.”
A glimpse of the future for long COVID caregivers
While there is no end in sight for long COVID caregivers, there is hope in the community. Long COVID Kids and Survivor Corps provide caregiver toolkits, webinars and other resources for the families of people living with long COVID. Meanwhile, the Long COVID Alliance is going as far as connecting people to online support groups to alleviate the isolation that often accompanies being a caregiver.
“The silver lining is finding Long COVID Kids and the support they could offer and the support I could give,” says Sarah. “I don’t know if I would have gotten this far without our little group crying out for the care our children deserve.”
As Sarah and Amy both mentioned, part of the long and winding road back to “normal” is simply finding little moments of joy with your loved one. Whether painting, singing or feeling the sea breeze on your skin.