Epidemic of heartbreak: Relatives of nursing-home residents wonder if they’ll ever hug their loved ones again – News – providencejournal.com

The nursing home called Roni Ferraro. It had a 30-minute visitation slot open for next…

Epidemic of heartbreak: Relatives of nursing-home residents wonder if they’ll ever hug their loved ones again – News – providencejournal.com

The nursing home called Roni Ferraro. It had a 30-minute visitation slot open for next Thursday, at 10 a.m.

Yes, yes, of course she’d take it.

Before the coronavirus, Ferraro spent six hours a day at Saint Elizabeth Home in East Greenwich, visiting and caring for Louie, her 74-year-old husband, who has Alzheimer’s.

How she had managed, years ago, to get him transferred into such an excellent facility, and only three miles from home, involved resourceful devotion: the daily examination of newspaper obituaries.

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Sure enough came that day in October 2015 when the death notices of two men, residents at Saint Elizabeth’s, appeared. Each notice suggested donations to an Alzheimer’s charity. Ferraro reasoned they had been residents of The Cove, Saint Elizabeth’s memory care unit.

She rushed to the nursing home the next morning: Do you have any beds opening up?

Louie moved in on Nov. 2 that year.

In a way, Ferraro did, too.

She arrived each day around 11:30 a.m. “Hi Louie, it’s Roni. I love you.” She hugged him and held his hand. She took him for walks down the hall and to the bathroom. She washed him before lunch, fed him, brushed his teeth and exercised his arms and legs to keep them limber, all the time seizing on those rare moments when his eyes met hers and there was, without doubt, recognition.

They watched the afternoon shadows shift with the sun and Ferraro, whose presence freed up her husband’s busy nurses and assistants, would again prepare Louie for dinner.

Though Louie isn’t high-functioning and communication is difficult, Ferraro could often decipher through the curtain of the disease her husband’s emotions and wants. She saw herself as an essential caregiver, a bulwark protecting Louie’s quality of life from the disease’s merciless attack on his brain.

Then the doors of Rhode Island’s nursing homes slammed shut March 12 as the coronavirus swirled. As of Friday about 72% of Rhode Island’s 1,107 coronavirus-associated deaths have been residents of nursing homes or other assisted-living facilities.

It would be five months before Ferraro would see her husband again.

By then, nothing would be the same.

Health officials lifted the initial visitation ban July 8, provided facilities developed their own plans for strict infection-control protocols, including mask wearing, no touching, and brief chaperoned visits, preferably outside, at a distance of at least six feet apart.

But the renewal of visits has been sporadic in some facilities, disrupted by individual positive cases popping up, shifting guidelines from state health officials, staffing pressures and reluctance for fear visits could invite the coronavirus’s return.

The result has been frustration — and even desperation — on the part of some families, says Kathleen Heren, the state’s long-term care ombudsman.

Her office has fielded numerous visitation complaints from families around the state — as well as calls from some scared nursing home administrators: “Some [callers] have told them they’re going to drive through their doors” if they can’t see their loved ones.

Last week, two workers at Saint Elizabeth Manor, in Bristol, conspired to allow the mother of one, a resident of the home, to greet several relatives at the entrance, none of whom wore a mask or kept their distance.

The incident forced the resident into quarantine and the cancellation of all visits for the Manor’s East Wing residents for 10 days.

Many distressed relatives, like Ferraro, say they’re willing to get tested, wear protective clothing, quarantine — anything for the chance to be with their loved ones.

“The staff go home and live with other people,” says Ferraro. “I live alone like a cloistered nun in the hope that I can get back in and do things for my husband — using safe practices.”

Heren says health officials and the home administrators are trying to be accommodating. But with recent cases on the rise again in some nursing homes, she doesn’t see visitation protocols changing much — although she emphasizes homes will have to make indoor accommodations as the weather cools.

“It’s a sad situation,” she says. “No one wants to make it hard for these families.”

At a news conference last month, Gov. Gina Raimondo urged nursing homes to expand their visitations, while acknowledging the state’s initial guidelines might have been an impediment. The guidelines called for a home to shutter completely again in instances of even one positive case. New guidelines allow unaffected portions of a home to remain open for visits.

Scott Fraser, president and CEO of the Rhode Island Healthcare Association, which represents 64 of the state’s 81 nursing homes, said at the time that nursing home administrators understood the families’ anguish.

But “our biggest concern is protecting our residents,” said Fraser. “We have been heavily criticized for the [number of] fatalities associated with nursing homes. Now our critics are saying we are not having enough visitations. You can’t have it both ways.”

Meanwhile State House Republicans, having heard complaints from constituents around the state, have filed legislation that would allow residents of nursing homes or other congregate-care settings to have one designated support person who would have “regular and sustained physical access” to them.

Rep. George Nardone, the sponsor of the bill, says that when nursing homes were short of certified nursing assistants months ago, Raimondo asked for volunteers with medical experience to help fill those voids. “If you can have a stranger come in, what’s the difference of having a loved one? This can be done safely.”

The Department of Health is reviewing the legislation, said spokesman Joseph Wendelken.

Ferraro braced for how she would find Louie on Aug. 12 after five months apart.

Their 30-minute visit took place in an outdoor garden area. Louie sat hunched over in a chair at one end of a rectangular-shaped glass patio table. She sat at the other end with a plexiglass petition separating them. The activities director, compassionate with all the dementia patients, served as chaperone, enforcing social distancing.

Ferraro could see Louie had failed, despite the staff’s best efforts. He was no longer ambulatory. His arms and legs had contracted and staff were placing his hands and arms in braces at night to relax them, she says. Where once he was eating regular food, now it is puree.

“You get diagnosed with the disease and it’s just a horrific, slow down-slide,” Ferraro says. “Then on top of that you are prevented from doing what you committed to do for all these years. I made a commitment to his quality of life, I know I was able to prolong that quality. Now it’s totally gone.”

The Cove has about 40 residents with Alzheimer’s or dementia. The relatives of several other residents are also frustrated with the home’s administration, which they say has been vague and inconsistent about visitation policy.

“I think our struggle as a family has been, we were promised one half-hour visit once a week and we’re getting visits only once every 14 days,” says Maria Renzulli, whose father Louis Vinagro, 73, has dementia. “We are a big family and we were up there every day, sometimes twice a day. My dad needs that touch and hug.The last time we went, he pushed the table aside. He wanted to try to hug us. He didn’t understand. It was just so upsetting.”

Patricia Medeiros says her mother, Elena Carbone, 91, benefited from the daily care and advocacy of family members.

“We are front-line workers. We feel we are essential. Why can’t we be tested? Why can’t we get in there? We don’t want to bring COVID into a nursing home. But it’s been managed over the last few months.”

In the 10 weeks since nursing homes were to reopen to visits, Medeiros says, her family has had only five visits. She was “horrified” to learn that the visit on Sept. 15, a day that was cool and breezy, would be held outdoors in the shade. She ended it 10 minutes in so her mother could be brought inside.

As of last week, data showed the Saint Elizabeth Home had had two positive cases since the pandemic arrived.

Mary Rossetti, a spokeswoman for Saint Elizabeth’s, said Monday, “We understand this is a very trying time,” particularly for families whose loved ones have dementia and can’t communicate easily or pick up a telephone. “But they are also the most vulnerable of our population” who struggle with safe practices like mask wearing and social distancing, and therefore are more susceptible to infection.

She said a recent inspection, prompted by a complaint, found the home’s visitation policy and frequency of visits “compliant and reasonable” with Health Department mandates.

“We are as anxious as anyone for a vaccine and … to welcoming our families back with hugs,” Rossetti said, “but we didn’t make the rules and we didn’t invent the virus.”

Ferraro took that visitation slot last Thursday morning.

She checked in at the table, set up outside the entrance to The Cove, and answered the health screening questions. Then, following safety protocol, she walked around the outside of the building to the fenced-in garden area in back.

Inside, at the far end of the patio table, Louie sat with his head tilted upward.

Ferraro stood up to try to make eye contact from some eight feet away.

Janice, the activities director, helped Ferraro get his attention. “Louie, look who’s here!” and Ferraro said, “Hi Louie, it’s Roni. I love you.”

Their eyes locked on to each other and held there for 10 minutes — the longest time, in a long time — as Ferraro recited her devotions to him.

Ferraro stayed until the very end, until Janice reminded her the 30 minutes were over.

Later, sitting outside in the Warwick yard that she and Louie once cared for together, Ferraro says, “There is no cure for Alzheimer’s. He’s going to die, I know that.

“My fear is that I’m never going to be able to kiss my husband or give him a hug before that happens.”

As she speaks an alarm buzzes in her pocket.

She takes out her cellphone: “That’s my 11:45 reminder.”

Time to get Louie washed for lunch.

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