Caregivers struggle to balance their important work with having lives of their own during lockdown.
Whether they provide care for free in the family home, or for pay on the job in a group home, caregivers and Direct Service Providers (DSPs) do essential work.
This is true always, but especially during the pandemic.
In addition to helping with life skills like cooking and healthcare, these days caregivers must teach and enforce distancing and mask rules — often to older adults who are change-averse, all the while making daily calls that affect life and death.
If caregivers find themselves growing sick, tired, or isolated with backup support professionals and family members necessarily distanced, they may not have the ability to take a break or quit.
A recent study reports that long-term caregivers show higher rates of mental health and somatic symptoms than others during COVID-19.
Even in ideal situations and despite intrinsic rewards, healthy boundary setting is more challenging than ever.
The two stories that follow feature well-supported, resilient caretakers. Even so, they highlight the necessary, tricky, often invisible work all caregivers do.
This work is physical, mental, emotional, and social. It taxes the caregiver’s vitality.
DSPs — be they at home or on the job — need financial, social, and health support to do their work well. Now more than ever.
Adele Bergstrom and Jeff Light’s third child, Carl, graduated from a Minneapolis public high school in 2011. When her children were younger, Adele was in the mix with other parents, facilitating activities and social outings.
Adele’s mothering role included advocacy for Carl, who has Down syndrome. Over the years, Adele organized and publicized Buddy Walks, presided over Individual Education Plan (IEP) meetings, filed reports and forms, and strove to give her son the best possible education and experiences.
Carl is a witty, empathetic lover of family and select teachers in his orbit. He navigates his iPad like nobody’s business.
Despite his enriched upbringing and advanced humor, he proved unable to learn to read or count money — skills he needed to live independently.
When Carl turned 18, Adele and Jeff filed for guardianship. With Carl’s social security payment, they hired personal assistants for a few hours a week to take Carl to the movies or bowling.
When the first assistant married and moved on, Adele’s heart wrenched for Carl — and for herself. She needed these assistants to give Carl the taste of independence she couldn’t give him.
Living at home, Carl enrolled in a 3-year life/work transition program. When Carl was bored in the program, he acted out. Program staff directed calls, emails, and reports to Adele to resolve.
Jeff did his part, waking Carl up in the mornings and taking him fishing on the weekends, but Adele was often on-call all week. By 2:30 every weekday, she’d wrap up her work to meet Carl’s van, then prepare him for their daily errands.
Sometimes when Carl got angry, begging insistently for a treat that wasn’t in the budget, his mother wondered how much longer this could go on. Then again, he was just as likely to apologize when he saw her getting upset.
“I love you, Mom,” he’d say out of the blue. Several times, he even prayed for her.
No matter what happened during the day, at the end of it, Carl always warmed Adele’s heart. He made life meaningful.
The decision to move Carl into a group home “had little to do with us,” Jeff says. “We love him to death, but we’re older parents. If he was living with us and one of us had died, we don’t know how he’d have handled it.”
Adele is 68 and Jeff is 75.
Carl himself craved independence. His parents recall him sitting on their family futon saying, “I’m bored. I want my own life.”
He’d seen his older brother and sister say the same thing and then go get it.
“We’re working on it,” Adele and Jeff would tell him.
Adele researched residential homes and talked to friends in the disability community about options. But the daily caretaking that had been her identity for so long made it hard for her to orchestrate a transition.
“Last fall, I decided to spend more time on it,” Jeff says.
He called REM Minnesota, a large organization that has group homes around the state.
“We’re going to get you your own place now that you’re a grown man,” they told Carl.
After multiple tours and some dead ends, the parents chose a home just 5 minutes away from theirs.
On their visit in February 2020, the house cook, Missy, served the family a delicious chicken dinner. The cozy-seeming house held 3 young men, with an opening for a fourth.
Later Carl would swap nicknames and jokes with his caregivers. He would befriend another resident, Michael. But the initial bottom line was rough: in any home his parents picked, however vetted, Carl would be living with strangers.
Transitioning involves a stunning leap of faith.
Those first few weeks, Carl begged his parents to pick him up. He acted out, stealing food. One night he insisted he needed to go to the hospital.
Meanwhile, Adele began the long-anticipated work of repurposing her life: evaluating writing projects, choosing volunteer work, rediscovering yoga. Still, worry sapped her energy.
Three weeks into his new home life, something shifted. Carl bonded with co-resident Michael over a basketball/foosball game. On an outing with his parents, Carl said goodnight without asking to go home.
Adele’s spirits lifted. She glimpsed a new life for Carl and for herself.
And then, “Bam,” Jeff says, “the pandemic hit…”
Henry Ukoha, now age 42, came to the United States from Nigeria and started working as a DSP in 2005, a transition he describes as absolute “culture shock.”
In Nigeria, he’d had no experience with people living with disabilities or with caretaking. To put Henry’s story in context, more than one-quarter (27.5 percent) of direct care workers were immigrants in 2017.
Between 2015 and 2017, along with a spiked need for DSPs, Black immigrants in direct care grew from 183,000 to 284,000 workers.
According to the U.S. Bureau of Labor Statistics, in 2019 the median yearly salary for a group home worker was $25,280 per year, or $12.15 per hour. A high demand for this low-paying but stable job meant it was one a new immigrant, like Henry, could access.
No one could be more surprised than Henry that the job he didn’t choose has turned out to be one he loves.
Meaningful work, higher stakes
Since 2015, Henry has been working at Kattan, one of multiple homes facilitated by The Jewish Foundation for Group Homes (JFGH), a nonprofit in the Washington, DC, metropolitan area.
Currently, Henry supports two men with special needs, including Johnny Koeppen, age 32. Johnny, an only child whose parents live nearby, is single. Johnny is artistic, engaging, but needs support managing his time and daily activities due to autism and ADHD.
Until last year, Henry worked weekday shifts at Kattan. Nights and weekends, he spent time with his family and attended school, working toward becoming an occupational therapist. Henry has a wife and two children, ages 2 and 3.
Monday through Friday, the men Henry supports at Kattan have classes. Henry organizes their schedules, their meals, their housework, and helps them problem solve and handle conflicts.
Henry’s work schedule stayed the same at the start of the pandemic, with added precautions to keep everyone in the house sanitized and safe. On April 4th, JFGH notified Henry that two individuals in the house had tested positive for COVID-19.
He was asked not to come into work for 2 weeks.
On April 20, 2020, JFGH asked Henry if he would come back to work under new terms — that he live in the house with the two men he supports. He would have to follow strict physical distancing guidelines, including not going home to his family at all.
After Carl’s group home went into lockdown in March, one staff member got COVID-19.
No further outbreak occurred, but the situation seemed surreal. Carl’s work program and gym shut down abruptly. So did family visits — even outside.
The staff communicated. Carl FaceTimed. But Adele felt cut off from her son and from her former self.
Three weeks into lockdown, Adele and Jeff were allowed masked visits to walk outside with Carl. After the end of one such distanced visit when Adele and Jeff tried to drive away, Carl grabbed their car’s roof rack and wouldn’t let go. The director had to come out and drag him in.
“I can’t overstate how hard that was, driving away, him pleading,” says Adele.
March through July 2020, Adele and Jeff didn’t see their son in person. They were afraid that the masked, distanced visits would upset him more than not seeing them at all. They worried about health risks. Carl has prediabetes, obesity, and risk factors for pneumonia and upper respiratory disease.
According to a recent study, “COVID-19 appears to present a greater risk to people with [Intellectual or Developmental Disabilities] IDD, especially those living in congregate settings.”
Adele and Jeff themselves are in the age bracket for particularly negative COVID-19 effects, according to the CDC. The group home followed
Sometimes Carl called and begged to come home. Other times he didn’t feel like talking. Staff members reported his ups and downs but couldn’t stabilize them.
When Jeff went to work in the morning, Adele had to force herself to do her Zoom activities.
How was she to launch her new independent life when most classes and in-person gatherings had stopped? Her worries about Carl bloomed.
One thought kept her going: Quarantining Carl in her own home without other young people may have been lonelier for him and worse.
In mid-November, Adele tripped on her yoga pants, catching her toe on the flared bottom, hitting her head on a table and damaging her rotator cuff. Gravely, Adele and Jeff recall how she spent Nov. 16 through Dec. 11 in the hospital, the longest the couple had been apart in 30 years.
Adele is home now, but everything’s different. It’s hard to imagine how they’d have managed with Carl at home and in lockdown.
After 50 years of caretaking, Adele has needed to accept care, with Jeff working remotely for about 2 months to help her get around while healing. During this limbo time, Adele has had to use a walker. She’s missing her freedom, but is grateful for Jeff’s help.
“She’d do the same for me,” says Jeff.
Meanwhile, Carl has adjusted to life in his new home.
His parents say he’s taken to calling daily around dinner time.
“Where’s my Jeff?” he jokes. “Our Jeff?” Adele laughs. “Our Jeff,” he concedes.
Carl FaceTimes his sister and brother periodically during the day, sometimes complaining, “stupid virus, I want it to go away.”
But he doesn’t ask to come home.
His gym has started up again for individual appointments. Carl’s relationship with Michael continues.
“I’m sure he tells his siblings more than he tells me,” Jeff says.
But what Carl, their social worker, and the staff says all sounds good.
Henry’s wife accepted his decision to live in the group home during the pandemic, understanding the importance of his work.
Henry describes a very good relationship with JFGH, which also helped make this decision possible. They’ve supported his family during his physical absence by sending them groceries and checking in.
Even so, if Henry had known from the beginning that he wouldn’t be able to go home for over 9 months, he doubts he would have taken the job. The separation from his family and living with young men separated from their own families has been tough.
“Thank God for the internet. I can talk to my children and wife,” Henry says.
Henry has been surprised by how positive things have been on the day to day. Henry and Johnny both agree that time goes by quickly, even happily. Johnny and his housemate have kept up with classes, including ArtStream and yoga, now virtual. Henry keeps them on track.
Some mornings waking Johnny up is a struggle, but Henry does it anyway.
“Someday COVID-19 will end and when it does, everyone, including Johnny, will need to function on a schedule,” he says.
“During the weekend, we go out, sticking to agency protocol. We drive to DC or Germantown, go to the parks,” Henry says. Henry and Johnny share that they both love listening to Nigerian musicians’ Tiwa Savage and Lisa Yaro in the car.
Johnny says Henry feels “like a cousin. He’s a good person and a very good dancer.”
Henry likewise says he enjoys Johnny’s company, that Johnny is “very smart [and] really listens.” Henry appreciates how Johnny “pulls his weight in the house, doing the dishes and the laundry.”
Once Adele’s health is back, she and Jeff plan to sell their home. They’ll live in a smaller place and Jeff will work less if he can.
Much of this depends on Carl’s continued adjustment to his group home and everyone’s continued health. Carl, Jeff, Adele, and the group home staff members plan to be vaccinated soon.
But like so many, they don’t know exactly when.
“We’re getting older,” Jeff says.
“Speak for yourself,” Adele laughs.
They daydream out loud about the really nice house they’ll get should Jeff win the lottery — with a dock by a lake filled with freshwater fish. Carl will get the chance to visit his new home away from home.
Unexpected changes, new friendships
Henry and Johnny say they’re going to miss each other when this unprecedented time is over.
Still, Henry looks forward to returning to his family and school. Johnny plans to move into a new home, although he keeps his excitement hushed so as not to upset his housemate.
JFGH’s CEO David Ervin has announced that by the end of March the process for getting all JFGH staff members and supported individuals vaccinated should be complete.
Until then, Henry and Johnny will continue to be together 24/7, making the best of it one day at a time.
Karen Sosnoski’s fiction and nonfiction, most recently in The Temper, explores what happens when people face their limitations through disability, illness, addiction, sports, or other intense encounters, such as art. Her work has appeared in diverse publications including Romper, Culture Trip, The Sunlight Press, Argot Magazine, LA Times, Poets and Writers, Word Riot, Grappling, Bitch, Radioactive Moat, and PsychologyToday.com, and on Studio 360 and This American Life. Berkeley Media distributes her documentary film, “Wedding Advice: Speak Now or Forever Hold Your Peace.”