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Frustrated by lockdown, relatives of long-term care residents want to be 'essential'

“We’ve lost out on over six months with my mother and — let’s face it — she doesn’t have that much time left," Renee Ciotti said.
Nursing Home Visits 09172020
(Getty Images)

Before Susan Penwell checked her 85-year-old mother out of her Boardman-area nursing home for good, she or one of her relatives would check on her every day.

The state didn’t allow outdoor visitation there, because the facility’s COVID-19 outbreak was ongoing and Penwell was told it first needed to be case-free for at least two weeks, she said.

But her mother had a first-floor room and they could try to talk through the window. Some days, nurses forgot to put in her mother’s hearing aid; some days, they forgot the batteries for it, she claimed.

“We were there every day at that window. We saw our mother deteriorating,” Penwell told Mahoning Matters.

In six months isolating in the facility during the COVID-19 pandemic, Penwell claimed her mother dropped three clothing sizes. The woman they saw through the glass sometimes had disheveled hair; unbrushed teeth.

“She’d be crying, ‘Get me out of here. It’s a prison. Get me out’,” Penwell said.

Penwell claimed there were a lot of “little things” long-term caregivers hadn’t been doing — things she and her family had been taking care of, until nursing homes locked down to keep coronavirus out.

Through social media, Penwell and hundreds of other Ohioans are mobilizing a grassroots effort drawing attention to legislation now on the books in other states allowing one designated relative of a resident into their long-term care facilities as an “essential caregiver.”

“Family members provide a good portion of the daily care,” Penwell said. “We as a family — not only did we buy supplies; one of us was there every day to make sure our mother was bathed on the [scheduled] day … to make sure she was dressed properly.

“It’s not just about visitation, it’s about the care.”

Designated essential caregivers under Minnesota’s law must wear masks, get screened for symptoms and maintain distance from staff and residents. But they can also spend more time with their loved ones and visit their rooms, according to the American Association of Retired Persons.

New Jersey, South Dakota, Indiana, Florida and Michigan have also launched or are developing similar programs, AARP reported.

‘SHE DOESN’T HAVE THAT MUCH TIME LEFT’

Though Penwell and others in her Facebook group have repeatedly plied Gov. Mike DeWine’s administration and the Ohio Department of Aging for a look at naming family members as caregivers in Ohio, Penwell said without any tangible response, she feels they’ve gotten nowhere.

“This is where our governor fails us,” she said. “God forbid — if you’re a prisoner, you’d be better taken care of. … I feel like the governor locked the doors and never looked back. ‘They’re protected. Leave them in there’.”

The Ohio Department of Health's amended order allowing for outdoor visitation, issued July 2, only requires nursing homes that choose to allow visitation to develop a plan that accounts for the number of coronavirus cases in the community and in the facility, and the availability of staff and virus testing, among other things.

Though Ohio began allowing outdoor visitation at nursing homes July 20, and assisted living facilities on June 8, those facilities have a lot of flexibility in setting guidelines or procedures for those visits. Available hours and dates vary by facility, and they can also choose to turn away visitors if they deem it too risky.

Though the grassroots group claims they've been told state directives keep them from offering visitation — a spokesperson for Shepherd of the Valley Niles who spoke this week to WKBN said the same — DeWine during a Thursday briefing said ODH isn't stopping visitation.

Until Penwell withdrew her mother from her facility, she was never able to talk face-to-face with her without a pane of glass between them, as the facility never went more than two weeks without an active case of COVID-19.

Renee Ciotti, of Salem, said her family is able to visit her 92-year-old mother at her Streetsboro assisted living facility during two-hour windows in the morning and afternoon, but ultimately has to drive an hour to spend 20 minutes with her, standing six feet apart and wearing a mask.

“Yes, she sees us like that, but that’s not good either,” Ciotti said. “She needs a hug.”

DeWine said Thursday he knows no-visitation policies must be "frustrating" and that he feels shortened visits are unreasonable.

"I just would say unless the nursing home has COVID in there or a real reason to [halt visitation] ... nursing homes should be allowing them to visit," he said.

Ciotti’s mother relies on a wheelchair. Though she can feed herself, she can’t check the refrigerator; can’t pick out clothes; can’t do the grocery shopping.

“We did everything,” Ciotti said. “When [her facility] closed, I said to the doctor, ‘My mom’s not gonna’ make it more than two weeks because she depends on us to be there all the time.’

“Now, it’s been so long, it’s just ridiculous. She cries all the time. Her mental state has declined,” she said.

“We’ve lost out on over six months with my mother and — let’s face it — she doesn’t have that much time left.”

OHIO MARKS 2,548 COVID-19 DEATHS IN NURSING HOMES

When DeWine has been questioned on plans for nursing home visitation during regular afternoon briefings on the state’s coronavirus response, he’s reprised the need to keep the state’s most vulnerable populations safe from a virus that is far more deadly to the elderly.

Since April 15, 2,548 of the state’s total 4,555 COVID-19 deaths have been long-term care facility residents, the state reported Wednesday.

There have been 213 long-term care facility deaths to date in Mahoning County, accounting for more than three-quarters of the county’s total COVID-19 deaths, Mahoning County Public Health also reported Wednesday.

In Columbiana County, eight new COVID-19 deaths from the past three weeks were tallied at a single long-term care facility in a Wednesday report, as they weren’t previously reported to the state, according to the health district.

During Tuesday’s state coronavirus briefing, DeWine sourced Ohio Department of Aging Director Ursel McElroy on the state’s upcoming plans for indoor visitation, which are expected to be unveiled “very soon."

"We certainly know that the weather is not on our side, but we recognize how important it is to have ongoing connections and having those relationships remain," she said. "It is not our plan to do anything to disrupt those connections. In fact, we're working very hard to be able to bolster those connections very soon."

McElroy added "because we have heard from families, we've worked to enhance our transparency surrounding visitations. The state is developing its own long-term care visitation dashboard, which could illustrate community-specific visitation guidelines that account for factors like the virus' spread, she said.

DeWine on Thursday said increasing availability of rapid virus testing for nursing homes is important for allowing regular indoor visitation and suggested that would be part of the state's long-term strategy.

"We still, as you know, are losing a lot of people in nursing homes. It just breaks my heart," he said. "We still have to be careful.

"At some point, we're going to get to the place where, in addition to the normal screenings we have in effect ... a test will be available at a reasonable cost. That person will take that test and wait 15 minutes and, if they pass that test, they will be able to go into that nursing home."

John Saulitis, director of Direction Home of Eastern Ohio’s ombudsman program, which advocates for nursing home residents and their families, said he expects Ohio's plan to resume indoor visitation likely won't need specific legislation. And he cautioned against interpretive definitions like "caregiver," which Michigan also avoided in its legislation, according to AARP.

He said the state faces some “challenging brainstorming” on visitation during the pandemic. Administrators are likely working out ways to account for the prevalence of the virus in any given community and determining PPE requirements for visitors, he said.

“The health and safety of the residents is always a concern. … There are nursing home COVID outbreaks at facilities that haven’t had COVID at all — suddenly, they’re in double digits in the blink of an eye,” Saulitis said. “COVID is out in the community.”

At the same time, he wonders how hospital visitation has been established — without any notable issues — while nursing home visitation hasn’t. If a nursing home resident ends up in a hospital, they can receive visitors, he said — but not if they go back to their long-term facility.

He also wonders what impact soon-plummeting temperatures will have on outdoor visitation policies.

“It’s tough because we continue to see the vulnerability of people in care,” Saulitis said. “It’s a question of ‘doing both.’ … How do you get the complete value of human content into the nursing home and protect the population?”

Ciotti, 67, said she’s “deathly afraid” of catching coronavirus and doesn’t grocery shop or dine in at restaurants — but she’s not isolating just for her own sake.

“I’m waiting for the day I can get in to see my mother. I’m not taking any risks because when that day comes, I want to get in there,” Ciotti said.

She hopes others would do the same, if family caregivers were allowed — “if you are risky, don’t come,” she said.

Penwell, when asked whether others might object to non-employees who could potentially bring coronavirus into their loved one’s facility, said she feels it’s more likely objectors only have relatives on temporary rehabilitation stays. She and others in her grassroots group have permanent residents.

“You gotta’ weigh the risks with the benefits,” she said.

A ‘VITAL’ RIGHT

A study contracted by the Centers for Medicare and Medicaid Services and released Sept. 2 recommends emphasizing nursing home visitation as a “vital resident right” and that new or updated guidance should focus on safely increasing controlled, in-person visitation.

It also calls for new or updated guidance on virtual visitation tools and techniques as well as new assessments on residents’ mental health and psychosocial well-being.

That study, conducted by aging officials from numerous states — including Beverley Laubert, Ohio Department of Aging’s state long-term care ombudsman — identified several problems surrounding the visitation issue, which mirrored many of the grassroots group’s concerns.

Though visitation restrictions are meant to protect residents’ physical health, they’ve also resulted in “unintended harm” to their mental health, according to the study.

“Residents experience loneliness, anxiety and depression due to prolonged separation from families and loved ones,” reads the study. “These measures also compromise the ability of families and guardians to validate resident well-being and safety and [have] caused significant distress for families.”

Study commission members voiced “serious concerns” about that effect during the study and supported finding ways to increase visitation without compromising infection prevention and control. Others, however, questioned whether it would be safe to relax restrictions in communities with high prevalence of the disease.

Public commenters “overwhelmingly supported” person-centered care policies and saw visitation as “vital to support nursing home residents.”

The study also found long-term care facilities’ virtual visitation alternatives an “insufficient substitute” — especially when considering residents with cognitive or sensory impairments or facilities that aren’t capable of making virtual visits work — and that nursing home staff have under-prioritized daily activities in the face of the pandemic, worsening that “unintended harm.”

Along with those “little things” Penwell’s mother went without, she claims nurses barely got her outside all summer — and only after Penwell made noise to ombudsmen — and also missed her mother’s scheduled bathings. The excuses were often the same, she claimed — the facility was shorthanded; someone called off; the nurse shifts miscommunicated.

The facility wasn’t able to bring in a podiatrist to trim residents’ toenails until about a month ago, she said.

“These places are understaffed and have been on autopilot for six months, and this governor has been ignoring the issues,” Penwell said. “Many will never recover from this isolation.”

Ciotti said she’s been losing sleep over it.

“It’s horrible thinking she’s in that room by herself. She’s in a wheelchair and she misses us desperately,” she said. “She told a nurse there, ‘I don’t want to live anymore if I can’t be with my kids. … And that broke my heart.”

New Centers guidance issued Thursday recommends reopening nursing homes to indoor visitation, provided facilities have not had any new onset of coronavirus cases in the last 14 days and the facility is not currently conducting outbreak testing. It also recommends limiting the number of visitors allowed per resident at the same time as well as the number of total visitors in a facility at the same time.

The Centers have also approved civil money penalty funds to go toward purchasing barriers for safe visitations such as tents and Plexiglas dividers.

Nursing homes would still be able to restrict visitation due to their county's COVID-19 positivity rate, COVID-19 cases within the facility, the virus symptoms of visitors or other factors.

The guidance also doesn't differentiate essential caregivers from other visitors.

Though Penwell’s family had already lodged complaints about her mother’s treatment at the Boardman-area long-term care facility through the state’s long-term care ombudsmen, she said they made the decision to remove her from the home permanently simply because they “couldn’t stand the frustration any longer,” she said.

Since then, Penwell and her sister have been splitting caregiver duties at their homes. She said she can see their mother’s face and smile brightening.

“We had her hair fixed. She’s gained 4 pounds in one week; she’s eating, she’s hungry,” she said.

But she’s still a little paranoid about falling — and about going back into the nursing home.

“Please don’t send me back,” she told her family.



Justin Dennis

About the Author: Justin Dennis

Justin Dennis has been on the beat since 2011, covering crime, courts and public education. Dennis grew up in Poland and Salem and studied journalism and communications at Cleveland State University and University of Pittsburgh.
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