A Year Into the Pandemic, Long COVID Is Still Burdening Patients—and Their Caregivers

When Ghenya Grondin starts rattling off the symptoms she still experiences a year after getting sick with what she believes was COVID-19, she has to pause to consult a list she keeps on her phone for occasions like this one. Exhaustion. Fevers. Headaches. Body aches. Chest pain and shortness of breath. Nausea and gastrointestinal problems. Dry eyes. Brain fog and memory loss—hence her need for a digital list, which goes on and on.

While Grondin’s physical symptoms are bad enough to keep her mostly homebound and unable to do her work as a postpartum doula, the constant mental fogginess has hit her hard emotionally. “I was always the friend and the sister and the cousin who remembered birthdays…and that has changed,” says Grondin, 42. “Balls are constantly being dropped in our household.”

That’s not for lack of trying, Grondin says. It’s just that all the responsibilities of what was once a two-parent, two-job household have fallen on the shoulders of her 42-year-old husband, Jonathan. Each day, Jonathan does his best to juggle his full-time job as a creative director; parenting three boys ages four to 14; maintaining the family’s home in Waltham, Mass.; and caring for Ghenya, who is so sick Jonathan doesn’t like leaving her alone for longer than an hour at a time. His wife now needs help with almost everything, from preparing meals to booking and attending doctor’s appointments to even walking from the bedroom to the bathroom.

“Every second I am awake, I am doing something to run the house,” Jonathan says. He can’t shake the feeling that, in trying to balance all of his tasks, he is succeeding at none. He worries he’s not emotionally present enough for Ghenya. He worries he’s falling behind at work. He worries the kids are eating too much junk food. Perhaps most of all, he worries about money; between losing Ghenya’s salary and paying for her slew of medical appointments, the family has accrued about $40,000 in debt.

And all of this is happening while Jonathan grieves for the woman he married—a woman full of energy and life whose presence commanded every room she entered, and who now needs help with the most basic facets of daily life. “After a year,” Jonathan says, “it’s hard to remember when it was different.”

Twelve months into the U.S.’ COVID-19 epidemic, the Grondins’ story is striking not because it is unique, but because it is not. Researchers estimate that somewhere around 10% of COVID-19 patients, if not more, will develop long-term symptoms of some degree. These symptoms run the gamut from neurological issues to chronic pain, and they’re often totally different from the symptoms typically associated with acute COVID-19. Doctors aren’t entirely sure why patients with Long COVID, sometimes also called long-haulers, don’t fully recover, nor how they should be treated. But experts do know that they don’t suffer in a vacuum. For each person who wakes up day after day with a running list of symptoms, there is often a loved one—or multiple loved ones—waking up ready to care for them.

In many cases, that’s a spouse or partner. But for other patients, care has come from more unexpected sources. Forty-seven-year-old Lyss Stern, an author and entrepreneur who lives in New York City and initially got sick last March, says her kids have stepped up to keep the household running, with her teenage son largely taking over food shopping and cooking. Netta Wang, a 23-year-old senior at Stanford University who has had symptoms for about six months, gets help from her roommates, who created a spreadsheet to divvy up her care—a sacrifice that is not lost on Wang. “No one wants to be sick in their 20s,” she says, “but also no one wants to be a caretaker in their 20s.”

The burden of Long COVID caretaking is creating a little-discussed crisis within a crisis. It is well-established that amateur caregivers often neglect their own health and well-being in the course of tending to a loved one, and that unpaid caretaking can become an unsustainable drain on a family’s finances. If around 10% of the nearly 30 million U.S. COVID-19 patients diagnosed so far require some level of care for long-term symptoms, that means millions of families around the country are living lives dominated by Long COVID.

Dr. Ronald Adelman, a geriatrician at New York-Presbyterian Hospital/Weill Cornell Medical Center who studies caregiving, says the uncertainty of long-lasting disease—not knowing when, or if, it will let up—adds to the stress on families. “Can you afford the mortgage? Do you have more kids?” he says. “It could be quite a nightmare for people who have lost their economic pathway and aren’t feeling well. It could be quite disastrous.”

Dr. Zijian Chen wishes he had an explanation. As the medical director of the Center for Post-COVID Care at New York City’s Mount Sinai health system, Chen is one of the U.S.’ top experts in this new specialty. For all his expertise, Chen still has no idea why some patients get better and others don’t, or whether there are risk factors that predispose someone to Long COVID. “I want to say something to answer your questions, but I don’t really have an answer,” Chen says. “I don’t know.”

One of the leading theories in the field is that some patients have an abnormal immune or inflammatory response, such that the immune system revs into overdrive, attacking the body in the process. Another hypothesis is that Long COVID is not a unique disease, but rather that a COVID-19 infection is a new trigger for myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral syndrome that comes with similarly long-lasting and debilitating—and baffling—symptoms. The National Institutes of Health in February announced that—with the help of more than $1 billion in Congressional funding—it would coordinate new research into Long COVID. The agency hopes to determine who is at risk and why and, ideally, develop new treatments.

But right now, researchers don’t even know with certainty how many people have the condition or who is likely to get it. Most existing studies are based on reports from specific medical centers that have kept records, which include whatever patients happened to seek care at a given center. That means researchers can’t really generalize from those data. However, from these anecdotal reports, researchers have extrapolated a few hypotheses. For example, it seems that many patients are younger than 50, and that many initially had relatively mild cases of COVID-19.

There is also some evidence, albeit preliminary, that women are more likely to develop Long COVID than men. One French hospital system found that female patients outnumbered male patients by about four to one. Chen says that in his clinic, about two-thirds of patients are women. Other U.S. hospitals have reported gender breakdowns closer to a 50-50 split, but usually with a slight overrepresentation of women. (It’s possible, however, that women are simply more likely to seek care or document their symptoms, as opposed to having a biological predisposition to the condition.)

Given that women still take on the bulk of domestic labor and child care in many American households, that disparity has especially large ramifications for caretaking. “She did everything,” Jonathan Grondin says of his wife. “She kept track of all the school stuff, teachers, doctors, dentists.” Those are all things he has had to take on, now that she can’t.

That transfer hasn’t been smooth for everyone. Chimére L. Smith, a 38-year-old English teacher from Baltimore, broke up with her boyfriend of two years after getting sick last March. “He didn’t believe that I had COVID,” Smith says. “I couldn’t quite deal with doctors telling me I was fine and [then] coming home to deal with a relationship and a partner who didn’t believe me.”

When Smith got sick, COVID-19 testing wasn’t widely available, and she was never formally diagnosed with the disease. As her symptoms piled up over the following months—vision problems, fatigue, light sensitivity, memory loss and more—doctor after doctor dismissed her concerns. Some asked if her symptoms might be related to drug use; one suggested a stay in an inpatient psychiatric facility. It took about six months for any physician to take seriously her supposition that her symptoms were the fallout from a COVID-19 infection.

“As a Black woman, I understand the history of discrimination when it comes to health care in this country, sadly,” Smith says. “But I never really quite knew until it knocked on my door.” Sick as she was, the experience prompted Smith to write to hospitals, researchers and local politicians, begging them to help spread the word about Long COVID—and the discrimination she and many other women of color face when they seek care.

There was one person who never doubted her, Smith says: her godmother, Paula Murray, a church pastor in her 60s whose house Smith moved into well before the pandemic hit. As Smith’s symptoms accumulated, Murray balanced her church responsibilities—like delivering food and other supplies to members who couldn’t go out—with becoming Smith’s primary caregiver, convincing her to eat when she had no appetite and nursing her back to “some semblance of health” during the months on end when she barely left the darkness of her basement bedroom. Even now, a year into her illness, Smith is too sick to work and needs her godmother’s help to travel to medical appointments and take care of chores like cooking. “It’s really, really showing me who’s in my circle,” Smith says. “She definitely deserves a vacation and a medal.”

Unpaid caregiving can take such a toll, it’s commonly referred to in medical literature as a “burden.” Studies have repeatedly shown that family caregivers often experience chronic stress related to their duties, and are at risk of depression and other mental health issues; they may also experience physical health problems related to poor diet and sleep or skipped medical appointments. Their work is also expensive. One 2013 study estimated that the average dementia caretaker loses more than $14,000 per year in forgone wages, to say nothing of the roughly $7,000 per year the AARP estimates the average caregiver spends out-of-pocket for related expenses. Nationally, according to a the AARP, family caregivers provide about 34 billion hours of unpaid care each year, worth $470 billion.

And yet, there’s been little discussion about the ramifications of Long COVID on caretakers. Adelman, the geriatrician, says that’s nothing new. “We talk about the caregiver as the silent patient,” he says. Actively assessing the caregiver’s needs, and including them in the patient’s medical appointments, can improve outcomes for both the patient and the caregiver, Adelman says.

But when money and time is tight, it can feel like a cruel joke to recommend that someone caring for a chronically ill loved one squeeze in yoga classes or sessions with a therapist for themselves. To truly support caregivers, Adelman says the government should provide support like expanded insurance benefits (which could help pay for professional health aids) or paid leave for caregivers. The U.S.’ Family and Medical Leave Act, which provides up to 12 weeks of leave to care for an ailing relative, does not come with pay. Even the Families First Corona­virus Response Act, meant to provide paid leave during the pandemic, has narrow eligibility requirements that mostly apply to parents caring for their children; it also expires after a maximum of 12 weeks. Beyond online support groups, there’s little specific help for Long COVID patients and their caregivers.

Zachary Klipowicz, a 40-year-old engineer from Colorado who is caring for his wife, Sherri, while she battles Long COVID, has so far made the arrangement work through a combination of teleworking and family leave offered by his employer. While his situation has worked fairly well so far, Klipowicz knows that is not the case for most people—and even for him, it’s not a long-term solution. “Right now employers aren’t understanding it. The government is not understanding that these people are unable to work; they are pretty much disabled,” he says. “I don’t think the U.S. is prepared for that in any way.”

Ghenya Grondin is painfully aware of these realities. As grateful as she is to her husband, and despite the ways in which his care has brought them closer, she worries about the toll it takes on him and their family. The couple sees a therapist, but she still feels anxiety over the burden she feels she’s placed on Jonathan.

“It’s till-death-do-us-part,” she says, “but that comes with a really heavy weight for everybody in my household.”

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Contributor: Jamie Ducharme and Francesca Trianni