Nursing home resident describes constant fear of COVID-19, isolation from family and beloved dog

Sandi Kleinz lives at Spring Creek Rehabilitation and Healthcare Center in Dauphin County, where 42 people have died of COVID-19. The National Guard came to help battle the plague of infections. The administrator brought in grief counselors for staff.

“I’m wearing a mask 24-7, keeping the door closed,” says Kleinz, 66.

Kleinz came to Spring Creek in February after a series of falls. It was right before COVID-19 surged, eventually infecting 224 residents and 35 employees at Spring Creek.

“Since this broke out, I’m a nervous wreck,” Kleinz says.

She got nervous when six people from California hovered over their loved one while not wearing masks during a courtyard visit on July 7. Kleinz confronted them, with one telling her COVID wasn’t a problem in California. California, in fact, has one of the nation’s worst outbreaks.

She’s nervous because of times when staff was short on equipment to protect against catching and spreading COVID. Now, with reports of supply-sucking outbreaks happening all over the country, Kleinz is nervous about a repeat.

She’s nervous about fellow residents who won’t or can’t wear masks, among many other things.

Beyond fraying her nerves, COVID breaks her heart.

Kleinz hasn’t had face-to-face visits with her daughters and seven grandchildren since early March. Nor has she seen her pug, Mocha, who she used to walk multiple times daily and whose scratching on the door drew help after Kleinz fell.

“I miss the hugs and kisses, the physical contact,” she says. “And I miss my dog so much.”

Kleinz, one of about 335 Spring Creek residents, describes a woman in a nearby room whose husband stands outside her window and writes on a tablet that he holds up for her to see. “I think it’s so cute. But it’s sad he can’t come in and see her,” she says.

That underlines another terrible toll of COVID-19, one that’s nearly invisible amid the daily infection and death totals: isolation and the resulting despair and depression.

“Unspeakably tragic”

Pennsylvania closed long-term care facilities to visitors in early March. The only visits taking place are those warranted by extreme situations, such as the resident being near death. Group activities and meals are other casualties of the highly-contagious disease.

Research has shown contact with loved ones is critical to the well-being of long-term care residents, helping them ward off ailments including depression.

Adam Marles, the CEO of LeadingAgePA, which represents non-profit long-term care providers, calls it “unspeakably tragic.”

“Our society’s elders who have built everything we are lucky enough to stand on are spending what could be their final days without access to the people who are most important to them,” he says.

It ripples outward -- COVID is robbing countless people of the chance to be an intimate part of their loved one’s final months.

“I know my rights”

Kleinz lived in Hershey before ending up at Spring Creek. She plans to eventually go home -- provided she evades COVID, which is most deadly among older people who, like her, have chronic illnesses such as heart disease. In Pennsylvania, it has killed more than 4,800 people in nursing, assisted living and personal care facilities -- nearly 70% of the state’s death toll.

After working for years in computer chip manufacturing, Kleinz became a certified nursing assistant in a skilled nursing facility, eventually rising to the position of director of medical records. Fear of COVID keeps her on constant lookout for lapses in infection control. She knows where to look. She’s not afraid to speak up. “I know my rights and I know what is right and what is wrong,” she says.

She has complained to the Pennsylvania Department of Health, exchanges emails with Dauphin County’s long-term care ombudsman and takes concerns to Mary Ann Chaklos, the administrator of Spring Creek.

She’s critical of certain staffers and incidents. But overall, she credits Spring Creek caregivers and managers for going to great lengths to keep residents healthy and safe. As with most facilities, Spring Creek struggles with a labor shortage and the caregivers are putting in major overtime.

“The staff is staying upbeat because of us and they are doing all the overtime because of us,” she says.

The atmosphere was bleak inside Spring Creek during the height of the infections and deaths, and it literally gave her nightmares, Kleinz says.

She tells of encountering a 12-year Spring Creek caregiver right after a long-time resident died and seeing the grief and tears on her face.

“It’s hard for people outside to comprehend the emotion and the humanity going on in here,” she says.

Kleinz credits Spring Creek staff with raising her spirits and calming her nerves. “They’ve talked me down quite a few times when I get really stressed out,” she says.

Zero infections

Kleinz recently received news that lowered her stress: Spring Creek has been free of COVID-19 infections since July 12.

Chaklos, the administrator, attributes it to things including aggressive testing, continued use of N-95 masks and specialized gowns even after infections became scarce, and “really, just not losing sight of how quickly COVID can spread.”

Now, the burning question is whether Spring Creek and hundreds of similar facilities around Pennsylvania can keep out COVID as it surges again in the communities outside their doors.

Unfortunately, various factors that contributed to the wave of death are visible on the horizon.

‘Perfect storm’ coming in fall?

The long-term care industry expected a summer “lull” in COVID infections, according to Zach Shamberg, CEO of the Pennsylvania Health Care Association, which represents long-term care providers. It would give time to fill various holes in policies, government response and protective equipment supplies, all of which helped fuel the spring surge of infections and deaths. Then they would be ready for fall, when another COVID surge is expected -- this one overlapping with regular flu season, which begins in late October.

But the lull didn’t come. Instead, COVID surged this summer, with major hotspots flaring up in multiple southern states. Those flareups, combined with interstate travel, are blamed for the resurgence in Pennsylvania.

On top of that, demand in those states is putting new strain on supplies of things including protective equipment and COVID-19 tests. It’s beginning to be felt in Pennsylvania, according to Shamberg.

Shamberg further describes growing delays in receiving test results, which could, among other things, interfere with meeting the health department’s requirements for resuming visitation.

“Unfortunately, we’re seeing some of the same challenges with protective equipment we saw in March, April and May,” he says. “This could be a perfect storm this fall.”

An infection prevention advocate

Kleinz was troubled by the incident with the non-mask-wearing California family. She says a Spring Creek employee who was present declined to intervene and others she called didn’t immediately act.

Chaklos, the administrator, says she didn’t learn of the situation until only one member of the family remained. “It was unfortunate. It has been addressed and it won’t happen again,” she says.

Kleinz worries about the fact that some residents don’t wear masks while outside their rooms. Spring Creek’s policy is for all residents to wear face masks, according to Chaklos. But it’s complicated, she explains, by medical conditions that prevent some from wearing a mask, or cognitive issues that interfere with the willingness of some to wear a mask or keep it on.

Kleinz also describes staffing shortages, detailing a weekend incident where she says there were 47 residents in her unit, with three more expected, with a staff of three nurses and two aides. She further contends agency staffers don’t adhere to the same protective equipment and infection control standards as do Spring Creek employees.

Chaklos says she wasn’t aware of the weekend staffing level described by Kleinz. She doesn’t dispute the account, but points out it can be hard for one person to know the full situation on a floor. If it were to happen, she says, the supervisor, the director of nursing and the scheduler would work the phones until staffing was adequate, she says. Chaklos acknowledges staffing can be a problem, especially on weekends, when it’s hard to find replacements when people call off.

She disagrees with Kleinz about agency nurses not upholding the same standards as Spring Creek staff. They wear the same protective equipment and must follow the same policies, according to Chaklos. In situations where an agency staffer repeatedly falls short, Chaklos says she contacts their agency and requests the person to no longer be sent to Spring Creek. She says agencies are staffed well enough to accommodate.

Kleinz also says Spring Creek didn’t immediately notify of her $1,200 government stimulus check and when she inquired, she asked why she wanted it. The government has told long-term care residents “This money belongs to you, not the nursing facility” and it “is the resident’s money to spend on their wants and needs.”

She complained to the Pennsylvania Department of Health about the check and several other things related to infection control, including the visitors who didn’t wear masks. The department investigated, saying it determined Spring Creek had notified residents of their stimulus checks by letter on May 28. The department further said if found no evidence of any violations related to infection control, while noting it “must rely on the observations and examination of documentation available to use at the time of our review.” Kleinz says inspectors spoke to other residents but not her.

Kleinz credits Chaklos, who has worked in long term care for 36 years and has been at Spring Creek since April, for being accessible and taking decisive actions. She has no complaints and only praise about her.

Chaklos, who says she gives her cell number to residents, families and staff, calls Kleinz “an advocate who will help me as an administrator improve areas that need improvement.”

Testing could spur staffing problems

Pennsylvania’s long-term care industry faced a staffing crisis before COVID struck. Much of it is blamed on low wages and the physically -- and emotionally -- demanding work, which has become even more so because of COVID.

In Pennsylvania, some long-term care workers walked off the job in the midst of the crisis, according to Shamberg. Many got sick or tested positive and were unavailable to work for two weeks or more. Some needed time away to recuperate from the stress. There have been news reports of staff who tested positive being required to return to work.

Pennsylvania recently began requiring testing of all residents and staff at long-term care facilities. It’s part of the effort to prevent another wave of infections and deaths and to eventually allow visitors. One purpose is to find employees who are infected but don’t know they’re sick and would otherwise carry the infection into facilities. At the same time, facilities also recognize it will result in more staffers testing positive and required to quarantine and be off work for 14 days. So they brace for another strain on their workforce.

Isolation may be worse than COVID, advocate says

Meanwhile, one of the gravest ongoing issues involves the social isolation resulting from the effort to prevent spread of COVID.

Long-term care facilities, often with help from outside organizations, have acquired iPads so residents can have virtual visits with loved ones.

Still, Diane Menio, executive director of the Center for Advocacy for the Rights and Interests of the Elderly in Philadelphia, argues facilities have had enough time to put the needed protections in place. Given the harms of isolation, she questions whether a continuing ban on visitation is justified.

Early on, the federal government told facilities there should be exceptions to the no-visitation rule. But that was widely interpreted as meaning end-of-life visits, according to Menio. She tells of a family who was told to come in for such a visit and while driving there received word their loved one had died. Moreover, it’s been up to individual facilities to set the terms of such visits, she says.

Menio tells of a couple married 67 years who wound up in separate parts of a facility because of COVID. The woman said she would rather die than be separated from her husband.

“Basically, the residents have been stripped of most of their rights and that’s kind of scary,” she says. “People deserve to die with dignity and that’s not happening right now.”

And there are more COVID ills and consequences, Menio says.

Normal health department inspections of facilities were suspended during much of the pandemic. Visits by ombudsmen, who help protect the right of long term care residents, are also limited. Moreover, family members often provide care which helps offset the consequences of thin staffing. Their presence can make a difference in things such as whether the resident finishes meals and maintains a healthy weight, according to Menio. Residents have lived without that since early March.

‘Game-changer’ need to open up visitation

The state health department recently laid out a plan for resuming visitation. It’s contingent on facilities testing all residents and staff and going two weeks with zero infections. The testing deadline for skilled nursing facilities was July 24, but personal care and assisted living facilities have until the end of August to complete this “baseline testing.” Then, provided a facility has sufficient protective equipment and related resources, it can allow visits by appointment and with various restrictions. However, a single infection can halt visitation for four weeks.

When pressed, long-term care officials say they have little idea when something resembling normal visitation will resume.

“I truly believe that until there’s a vaccine, things will not be normal in long-term care and they may never be normal again,” Shamberg says.

Chaklos stresses that the level of infection in the local community dictates the risk within facilities, with infections typically carried in by employees who feel no symptoms. If COVID is widespread in the community, it will be hard if not impossible to freely allow outsiders, she says.

The “game changer” in visitation, Marles says, would be a test that can be given on the spot and return results within minutes. Unfortunately, such tests have proven unreliable, and it could take months until an adequate version is widely available.

Marles and Shamberg, the spokesmen for the industry, say the key to preventing a repeat of the earlier wave of long-term care deaths is to give long term-care facilities highest priority in receiving protective and testing supplies and whatever resources the situation demands.

“It’s going to take sacrifice and everyone pulling together. Your parents and grandparents are depending on everyone acting in a way that will keep them safe,” Marles says.

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