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Illustration by Hunter French 

U.S. Caregivers Struggle With Coronavirus in More Ways Than One

Even in normal times, life as a caregiver is tough. COVID-19 has made the personal, emotional, and economic costs difficult to bear.

Jeff Christensen has been on the go a lot lately. Sometimes, it’s for work in Arizona, Michigan, or Wisconsin. But more often than not, he’s simply crossing East Waymark Circle in Salt Lake City, Utah, to visit his dad, Reed.

Christensen, 56, is his dad’s primary caregiver. The role requires him to traverse the street between their homes every hour or so to prepare Reed's meals, administer eye drops, deliver groceries, manage finances, and, above all, keep him company.

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This form of companionship is therapeutic in more ways than one: Without the supervision, “who knows what might happen,” Christensen said. Recently, Reed was “putting around in the garage, and easily could have tripped on something and seriously hurt himself.” So, Christensen “went over just to listen,” he said, “to make sure he was still moving around.”

Since the early stages of the COVID-19 pandemic, much attention has been devoted to flattening the curve of the disease while also raising the line of health care system capacity. In other words, keeping people out of the hospital.

Many of the individuals required to turn those ideas into reality reside outside the traditional health care settings. They are responsible for preventing potential patients’ deterioration in the first place, and helping patients discharged from the hospital recover and rehab at home.

These largely unrecognized workers include personal care aids, community health workers, and home nurses. They also include family caregivers, like Christensen, whose role has only grown more critical in the coronavirus era.

Even in normal times, caregivers like Christensen are the bridge between the hospital and the home by providing services and companionship to dependent adults and children. During COVID-19, this role has only intensified as families have sought to avoid exposing their vulnerable loved ones to the virus. Doctor’s visits have shifted to the virtual setting. Supportive medical services like at-home rehab and nursing have been overwhelmed. Many social services have gone offline too. All of this has come at a considerable personal, emotional, and economic cost to caregivers.

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Family caregivers tend to be left out of the conversation around the healthcare workforce. But they are everywhere. More than 50 million family caregivers provide aid to some 70 million adults and children every year in this country, according to one AARP report released in May. The majority of these care recipients have a long-term physical condition and require help with at least one of the fundamental activities of daily living.

In normal times, these caregivers are poorly equipped with the support, resources, or information needed to provide intensive care to their loved ones. During COVID-19, for people like Benita Manriquez, these burdens have accumulated further still.

Manriquez, 70, provides care for her husband, Ken, in their home on Fairfax Avenue in East San Jose, California. Ken has late-stage Parkinson’s disease, so “in general, he doesn’t understand what’s going on,” Manriquez said. “But now, it’s a whole other story.” He needs help with all of his basic tasks, including bathing, dressing, and toileting. This is challenging for Manriquez. She is less than five feet tall and weighs less than 120 pounds. Ken is five-foot-seven and pushing 200.

Previously, Manriquez received some respite from the daily caretakers provided through the Department of Veterans Affairs—“an absolute godsend,” she said. That has all changed in recent months.

In the wake of COVID-19, all of Ken’s routine care—dermatology, cardiology, neurology, psychiatry—has been deemed non-essential. Rather than risk receiving care at a virus-overwhelmed hospital, Manriquez put Ken on hospice to “make sure he stays comfortable, at least.”

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The hospice declaration has made Ken ineligible for his previous Veterans’ services. Instead, a hospice aide comes twice a week to assist with a narrow set of predetermined tasks. These aides change frequently, though “sometimes we’ll luck out,” Manriquez said, “and have the same aide for two weeks.”

The lack of continuity means getting each new aide up to speed on Ken’s needs every week. This sort of inconsistency is associated with more unmet needs and worse patient outcomes, according to Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

It also means introducing Ken weekly to the new person responsible for assisting him with some of the most private activities in his life. For Ken, like others with cognitive impairment, this is confusing and anxiety-producing. Additionally, the revolving door means inviting a constant stream of unknown strangers into their home, amidst the spread of a virus which may not cause any symptoms.

Though, recently, that’s been less of a concern. The hospice aides have been calling out sick, leaving the house on Fairfax all alone.

The pandemic has also created new challenges for caregivers whose loved ones have more wide-stretching needs—such as those suffering from musculoskeletal or neurocognitive disorders.

Teresa Jurado, the mother of Timmy, a 30-year-old with cerebral palsy, has been unable to get him the care he requires. The physical, occupational, and speech therapy do more than “providing for his physical needs,” Jurado said; they “make Timmy a part of our family and allow him to be part of our lives.” For example, when his back muscles are strong enough to tolerate an upright chair, and his hand muscles are dexterous enough to hold a fork, Timmy can share dinner with the family at their home overlooking the ocean near Half Moon Bay in California.

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Moreover, the issues are particularly prominent for those whose loved ones would, in typical situations, reside long term in assisted-living facilities—especially since these facilities have mutated into COVID-19 hotspots. As of July 19, 4 percent of total COVID-19 cases—and 30 percent of deaths—in the United States occurred in these facilities. Only one in 40 Americans live in such settings.

“A lot of people are asking themselves,” said Annie Roche, a family consultant at the Family Caregiver Alliance, “‘if I take Dad to a home or a hospital, will that be the last time I see them?’”

Jeff Christensen, in Salt Lake City, was forced to make such a choice. After Reed was hospitalized for pancreatitis in early March, he was discharged to a rehabilitation facility to recover. When Christensen heard the facility was owned by LifeCare, the same company that owns a notorious nursing home in Kirkland, Washington, “we decided we simply could not keep him there,” Christensen shared. At that point, Reed was still delirious, agitated, and incontinent of both bowel and bladder.

“We really didn’t feel comfortable taking him home,” Christensen said, “but COVID forced our hand, to save his life.”

Beyond health care alone, COVID-19 has decimated the network of social services—food pantries, community centers, day programs—upon which dependent individuals and their families rely.

Before the pandemic, Meals on Wheels in Central Maryland (MOW-CM) provided 27,000 meals per week for homebound individuals in the neighborhood. Now—with more dependents living at home, widespread economic strife amidst mass unemployment, and other factors—recently, that figure has leapt to 72,000 meals per week. “The people who had been getting by thanks to the support of family, neighbors, and friends,” said Stephanie Archer-Smith, executive director of MOW-CM, “are now realizing how vulnerable they are.” Simultaneously, compared to last year, volunteer hours for deliveries have dropped by one-third.

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These patterns are not benign. For the many patients with end-stage heart disease, kidney disease, and diabetes—as well as those who are simply picky eaters—food insecurity can quickly turn deadly.

The absence of social interaction bears other consequences. Programs like MOW serve as critical links between at-risk individuals and families and the health care system—in turn, reducing negative outcomes such as hospitalization and isolation. These programs are “more than just a meal,” Kali Thomas, an associate professor of Health Services, Policy, and Practice at Brown University, has written.

For children with development disorders like Ava Parham, who has Down’s Syndrome, socialization is indispensable for their growth and happiness. Even though Ava is non-verbal, “I can sense an underlying depression, for the loss of her friends, her hobbies, her life, out there,” said Amy, her mother. Ava had been walking into the garage, trying to open the car, and sitting out on the driveway, in frustration.

The loss of social engagement has also impacted her ability to achieve the highly specific goals set out in her Individualized Education Plans. “The classroom is simply not translating home,” Amy said, “the opportunity to learn, be safe, receive warmth and care, and have real-world experience in an independent way—that’s impossible to replicate.”

“The fear of regression,” Amy added, “is very real.”

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The strain of caregiving also affects the health of the caregivers themselves.

In normal times, caregiving is physically, emotionally, and economically strenuous. During COVID-19, the depletion of formal and informal support networks has amplified the day-in, day-out pressures on caregivers—creating new stressors, worsening old ones, and preventing caregivers from seeking the self-care that might otherwise prove restorative.

“It’s a new kind of intensity—truly constant, truly without a break,” said Traci Dobronravova, director at the Jewish Family and Children’s Services, “with high potential for burnout.”

For example, while Reed Christensen’s five adult sons split preparing his dinner on weekdays and rotate on weekends, Reed’s constant, unscheduled, residual needs fall upon Jeff. “It’s a daily burden, no question,” he said.

The burden is also intensely physical. Both Teresa Jurado and her husband have back injuries from lifting and transferring Timmy, for which they have long considered surgery. Benita Manriquez, in San Jose, is months overdue for bloodwork for her own health conditions.

“Under the best of circumstances, caregiving is a team sport,” said Sarah Szanton, the director of the Center for Innovative Care in Aging at Johns Hopkins. “But COVID has thrown that completely off.”

The heightened financial burden is also staggering. Caregiving is expensive at baseline: consuming one-fifth of the average caregiver’s income, or $369 billion annually in aggregate. And many costs that might have previously been covered through housing or day programs have now been foisted on caregivers.

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For example, in Miami, Jean Sherman pulled her 51-year-old son Christopher, who has severe intellectual disability, out of the Sunrise Opportunities Group Home during COVID-19. The home receives $583 per month for room and board—as well as thousands more for various supportive services. In the nearly three months Christopher has been home, Sherman has not seen a penny.

“We as a society have devalued nurturing,” said Trivedi, at Stanford. “Teachers, nurses, mothers—caregivers, in all forms—we say, ‘you should just do this out of the goodness of your heart.’”

Failing to support these unsung workers may well impact the country writ large. As the war against the virus shifts out of the hospital, the home is rapidly becoming the battleground against the virus, said Szanton, at Hopkins. This is especially the case as emerging evidence suggests that the rate of community infection may be multiples higher than previously believed.

If caregivers are no longer able to provide for their loved ones—due to the virus or otherwise—the consequences may be dire. Since minorities, immigrants, and women are more likely to be caregivers, the populations already most vulnerable would face the greatest risk, Trivedi said.

“If there’s any time we’ve recognized the value of these folks,” she added, “it’s now.”

Manriquez, in San Jose, is prepared for the worst.

If she contracts the virus, Ken’s son Daymon in San Diego will drive up. He’ll need to convince Ken to pack his bags without disorienting him. He’ll need to get him up and out without Ken losing consciousness. He’ll need to get Ken situated in the car. Then, he’ll drive Ken seven hours down Highway 101 to his new home.

“But, to be honest,” Manriquez confessed, “if something were to happen to me, I don’t think Ken would make it.”