Gary Wilkie never wants to go back to a nursing home, but the 79-year-old knows that without more people in his life to support him, he may need to.
Wilkie spends most of his days alone in a one-bedroom apartment on the third floor of an affordable-housing complex in Durango, Colo. He watches television to pass the time; doing most anything else is painful. A metal rod in his left leg, affixed with screws at his hip and knee, keeps him from moving at pace.
While Wilkie doesn’t worry about contracting the coronavirus, the impacts of the pandemic strained already short-staffed caregiving services, leaving Wilkie and other seniors in southwest Colorado without much of the support they need to survive.
Advocates say the pandemic has brought to light longstanding challenges to accessing the home-based services that many seniors need in order to live independently. Caregiving workforce shortages existed before COVID-19 arrived in southwest Colorado, according to local service agencies. The jobs haven’t paid well for years, making turnover common—and now, caregivers have to worry about either contracting or spreading a virus that’s particularly dangerous to their clients.
Local nonprofits and volunteers are doing their best to help, given the situation. But as the pandemic persists, the toll of the increased isolation—both physically and mentally—is significant, and in some cases permanent.
This spring, Wilkie left a nursing home in Pagosa Springs—after 14 months living there—with a housing voucher, financial assistance, Medicaid-funded caregiving services and a risk mitigation plan, all with the hope of keeping him independent and out of a nursing home, said Denise Magner, nursing home transition coordinator at the Southwest Center for Independence. The regional nonprofit organization is led by and provides services to people with disabilities, as well as elderly community members.
But within weeks of Wilkie’s move into an apartment, confirmed cases of COVID-19 and community spread were reported across Colorado. Risks to caregivers—who may see a number of clients in a day—increased, making it even harder for agencies to find employees willing to provide in-home services to at-risk individuals for close to minimum wage.
Wilkie, isolated and without care, fell on May 7 and broke his hip. By the time he came to, he was in a nursing home, again, but this time in Durango—the same facility where his wife died years earlier after enduring Alzheimer’s disease. He recovered there for almost two months, finally returning to his apartment on June 24.
“You’ve got to have help. You can’t do it on your own,” he said. “I try to do it on my own, but I can’t.”
He can call Shera Johnson, who volunteers with the Southwest Center for Independence to help local seniors, when he needs a ride to the grocery store or a doctor’s appointment. But the more time Johnson spends with Wilkie, the more she realizes she alone is not enough.
Johnson, a local business owner, was enthusiastic about supporting people in her community, despite her own struggle with isolation during the pandemic. But she has a family, friends and access to the outdoors—Wilkie doesn’t. Johnson said her excitement soon turned to exhaustion this summer as she realized she couldn’t support all of Wilkie’s needs.
“The more time I spend with him, the more he realizes he’s lonely,” she said. “This is something I want to do for Gary and the community, but I can’t do it by myself.”
“A lonely end”
Katherene Simpson wasn’t found for hours after she fell.
The 72-year-old was leaving her place in Pagosa Springs for a pre-operation appointment in 2017 in Durango to repair vertebrae she compressed in a previous fall. She experienced renal failure by the time someone found her.
Doctors sent her to Colorado Springs for treatment and care. Three nursing homes and almost three years later, she moved to a facility in Pagosa Springs with the help of a family friend and social worker who lives there. That was around the time new symptoms started.
“I started losing faculty, getting demented,” Simpson said. “I couldn’t remember things, couldn’t do this or that.”
Despite this, after seven or eight months in a Pagosa Springs nursing home, doctors, nurses and social workers concluded Simpson could live on her own. Magner helped her obtain a housing voucher and support services this spring. Simpson moved into a third-floor apartment in Durango on March 9, just across the courtyard from Wilkie.
The World Health Organization declared COVID-19 a pandemic two days later.
No one came to visit, Simpson said. She didn’t leave her apartment for weeks at a time. She’d been eager to do art and garden, but impacts of the pandemic limited services and businesses already struggling to meet demands, leaving Simpson without the support she needed to get supplies or tools.
“I felt isolated from the world,” she said.
Disability advocates have increased nursing home transitions throughout the state during the pandemic, said Julie Reiskin, executive director of the Colorado Cross-Disability Coalition (a Colorado Trust grantee). There’s good reason why.
More than 40% of all COVID-19 deaths (over 68,000) and 8% of all cases nationwide (over 400,000) have been traced to nursing homes, which represent less than 1% of the population, per Reiskin. In Colorado, more than half (54%) of COVID-19 deaths have been linked to such facilities, according to a New York Times analysis. At least 453 COVID-19 deaths in Colorado have been traced to Medicaid and/or Medicare certified nursing homes, according to data collected by Atlantis Community, Inc., a Denver-based independent-living services provider.
The Southwest Center for Independence has helped at least four seniors transition out of a nursing home and into low-income housing in the past year, and at least nine more people across southwest Colorado are in the process, Magner said. Yet their ability to access home care has never been more challenging.
It was already hard to find people to work professional caregiving jobs in southwest Colorado, said Vanessa Velasquez, administrator at Colorado Compassionate Care based in Mancos. The caregiving agency only learns of potential new clients when they call to ask for services, making it difficult to know when to hire and retain employees.
“A lot of people chose to leave because they were scared of COVID,” she said. “It’s a day-by-day situation for home health care.”
Many of the seniors Magner is working to help move out of nursing homes aren’t fearful of COVID, she said: “They’re more scared of living but not living. And that’s what they’re doing now. They’re not really living.”
“What do they have to look forward to? Nothing,” Magner added. “And that’s not just COVID. It’s rare on a given day that someone speaks their name.”
Simpson can’t get groceries on her own. When the elevator in her apartment complex breaks, she’s trapped on the third floor. Her brother in Pagosa Springs stopped visiting. She’s run out of food at least once.
“It’s a lonely end to a life that’s been full of joy,” Simpson said. “There’s not much I can do about it. I’m confined.”
Simpson and Wilkie aren’t friends; they’re neighbors. They don’t have much in common—he, a former guard for Queen Elizabeth II who did “anything I could get away with;” she, a former secretary who “would never show hate with people.”
But they do share one passion: gardening.
Wilkie is quick to boast about the “big, beautiful tomatoes” he’s grown most of his life. Simpson studied landscape design in Thousand Oaks, Calif., where she lived before moving in 2016 to Colorado.
Gardening “is a way you can feel useful, so you just don’t feel like you’re stuck in something,” Simpson said.
Four raised-bed gardens now stand in the courtyard between the buildings where Wilkie and Simpson live. A grant via the Southwest Center for Independence paid for the construction. Simpson came up with the idea for a community garden, and Magner recognized an opportunity to bring more people and support into her client’s lives.
“It’s about getting a number of different people doing one simple thing,” Magner said. “Neighbors come, get to meet neighbors, get fresh air and they can take part in an activity. It’s kind of like, on a small scale, making it really simple to support this group of folks who are isolated.”
Wilkie and Simpson meet with Magner and others in the affordable housing community each week for a community event. Sometimes it’s yoga, others it’s art, but most recently the time has been dedicated to garden planning. The garden and weekly activities get Wilkie and Simpson out of their apartment to interact with others (while socially distanced), giving them something to look forward to each week and an excuse to get outside.
But regardless of the pandemic, short staffing at caregiving services often gets in the way of supporting seniors in southwest Colorado, said Tara Kiene, executive director at Community Connections, which employs case managers and provides direct services for people with intellectual and developmental disabilities. This summer, the organization started working case management for seniors who have transitioned out of nursing homes.
About two dozen case managers work at Community Connections, serving around 750 people ranging from children to seniors across five counties. Case managers help clients get home health care services.
Some clients choose consumer-directed care—giving individuals the ability to hire, fire, pay and train their own caregivers, oftentimes family or friends, with Medicaid money that would have otherwise been used to pay a caregiving agency. Consumer-directed care is often popular in rural communities as an option for services otherwise not available, Reiskin said.
But not everyone has the faculty or wants the responsibility of managing their own services, and not everyone has friends or family they can rely on for help, Kiene said. Just over 100 Community Connections clients use consumer-directed attendant support services, most of whom live with family.
Community Connections works with five home health care agencies in the region to get services for people without support otherwise; Colorado Compassionate Care in Mancos is one of the five. But agencies have overhead, and Medicaid funding doesn’t stretch far enough to pay caregivers much more than minimum wage. Furthermore, caregivers are expected to drive their own vehicles on an hourly rate rather than be reimbursed for mileage, said Velasquez, the Colorado Compassionate Care manager.
“I just know that it is hard to staff, especially with the pay that they give the PCWs [personal care workers], them having to go and take their own cars—people weigh out the numbers, and it has to be a very compassionate person who wants to do this job,” she said.
Higher Medicaid reimbursements from the federal government and Colorado could incentivize more people to take home health care jobs, Velasquez and Kiene said. But in the meantime, low wages for caregivers, an increasing cost of living in Colorado and ongoing risks associated with COVID-19 has made it hard for people like Wilkie and Simpson to get the support they need.
Magner started a volunteer program to help address the caregiver shortfall in the area. Johnson, who volunteers to support Wilkie, joined after she saw a post on social media looking for support for seniors in Durango.
Wilkie’s health concerned Johnson when she first met him. “He was in such a depression, having a hard time feeding himself, hard time getting up and getting motivated,” she said.
In the time she’s been meeting with Wilkie, his spirits have risen and his broken hip has healed. He can walk again but still has some trouble navigating the grocery store.
Prior to his stay in nursing home confinement, Wilkie spent his days drinking coffee and playing cards at a local senior center. He lived alone in an apartment. He had friends.
“I got to know everyone,” Wilkie said. “I would sit with them and play funnies with them, just to get them to laugh.”
Yet the senior center has since closed its doors. Wilkie hasn’t lived in his apartment long enough to make friends. And social distancing doesn’t help his chances of meeting new people.
“I’ve got no choice,” he said. “If I’ve got no support, I need to go to a nursing home.”