'My biggest fear is she will die alone': Families agonize over separation as coronavirus spreads in Minnesota's nursing homes

In the weeks since the coronavirus outbreak began, Jillian Van Hefty has tried to suppress any outward signs of the anguish she feels over being separated from her elderly mother, who has Alzheimer's disease.

But she couldn't stop the tears one recent morning as she stood with her 11-year-old son, Alex, as they waved and blew kisses to the 77-year-old woman, who waved back from behind the screened window of the All Saints Senior Living community in Shakopee. As cars passed, Alex pulled out his large baritone horn and played parts of Beethoven's Ninth Symphony, hoping the notes would soothe the pain of their physical separation.

"I am trying to stay strong, but it's absolutely tearing me apart that I can't reach out and hug my mother," Van Hefty said. "I don't want her to feel abandoned."

Outside senior homes across Minnesota, adult children are talking to their elderly parents through windows and pressing their hands and lips to the glass — like visitors to prisons. They leave care packages outside locked doors and wave from a distance.

Even married couples who live in the same facilities have been separated.

They worry it could be weeks or months before they will be able to touch their relatives again. Many fear the worst is yet to come, and their loved ones will die alone, with no one holding their hand.

Elderly people all over Minnesota are being separated from their relatives as senior living communities impose unprecedented restrictions on visitors to prevent the spread of the novel coronavirus. Over the past two weeks, four of the five Minnesotans who have died from the virus lived in senior care facilities.

All told, at least 17 Minnesotans living in nine senior care facilities across the state — from the Twin Cities to Kandiyohi County in central Minnesota — have become infected with COVID-19, the disease caused by the virus. Still, public health officials fear the virus has already spread to potentially many more facilities but the cases have gone undetected.

Minnesota's long-term-care industry is trying to avoid the nightmare scenarios rapidly unfolding at facilities in other states, from Virginia to Washington, where frantic efforts to shield residents came too late and dozens became infected with a virus that is especially dangerous to the elderly. In what may be a worst-case scenario, more than 80 residents have tested positive for the coronavirus at a nursing home in Kirkland, Wash., and at least 37 have died. Another horrific scene developed this week at a nursing home in Little Rock, Ark., where more than 40 residents have been infected.

"We know this is going to get worse, much worse," said Jean Peters, president of Elder Voice Family Advocates, a volunteer group seeking better care for seniors.

Government health records suggest that people have reason to be concerned.

Long before the coronavirus arrived in Minnesota, nursing homes across the state were struggling to comply with basic infection prevention protocols. About 70% of Minnesota's 370 nursing homes were cited for one or more infection-control violations — many serious — over the last two inspection cycles starting in 2016.

Even among nursing homes in Minnesota with the federal government's highest overall rating of five stars, 40% have been cited for an infection-control violation, according to a Star Tribune analysis of federal data compiled by Kaiser Health News.

"You can't largely ignore a highly prevalent, systemic and serious public health problem for years and then expect it to be miraculously and promptly addressed effectively during an epidemic," said Eilon Caspi, a gerontologist and adjunct faculty member at the University of Minnesota's School of Nursing.

As the number of coronavirus cases accelerates, many families are left with an agonizing choice over whether to move their frail parents out of facilities that are fast becoming small fortresses, with "No Visitor" signs blanketing their locked entrances and parking lots. Those who are unable to care for their loved ones at home wrestle with the emotional toll of separation and not knowing for certain if their relatives are healthy and safe as the pandemic spreads. "The choices we are being forced to make are gut-wrenching," Patty Sagert said as she dropped off groceries for her elderly mother.

On a rainy evening this week, Danielle Jin held up an umbrella and calmly pressed her palm against the bedside window of her 91-year-old mother's room at an assisted-living facility in Vadnais Heights. Her mother, Juan Zhu, a petite woman of 80 pounds with early signs of dementia, looked slightly confused as she placed her hand on the other side of the window. It was the closest the two have come to touching each other since the facility went into lockdown earlier this month.

"I love you, mom," Jin said in Chinese, as she touched the glass.

For Jin, a clinical research coordinator at the University of Minnesota, these evening visits by her mother's window have become a daily ritual, and a critical way to check on her mother's well-being. Recently Jin noticed a large and unexplained rash covering much of her mother's back. On a recent visit, she motioned for her mother to pull up her shirt in front of the window, so she could monitor the rash, which was receding. Jin also worries about whether her mother is getting enough to eat, so she brings a home-cooked meal on each visit, and watches through the glass to make sure none of it goes uneaten.

But Jin still worries about her mother's increased social isolation and whether her daily needs are being met. Before the coronavirus hit, Jin would help her mother bathe, brush her teeth and prepare for bed each night. Now Jin is no longer allowed to step inside the facility. "When there was no lockdown, I could just go in there and do all those cares myself," Jin said. "Now I worry about getting one of those terrible calls, the call where they say your mother doesn't have long to live." She added, "My biggest fear is she will die alone."

The restrictions have become so severe that even relatives living in the same senior living communities are being barred from seeing each other.

Glenn Nordgaard and his wife of 65 years, Judy, moved into the York Gardens senior community in Edina about a year ago. Because Judy was struggling with dementia, she was placed in a memory care unit on the first floor of the complex. Yet the two were still inseparable: They would hold hands at dinner and chat for hours while watching television in the evening, Nordgaard said. "Judy means everything to me," he said.

Their marital routine has been upended by the outbreak. Residents at York Gardens have been told they must spend most of their time confined to their rooms, and Nord­gaard has not been allowed to see his wife, except once via a remote video feed, for nearly three weeks. Nordgaard said he hopes the coronavirus will dissipate in time for their 66th wedding anniversary in June.

"It's lonely here," he said. "My wife and I have been together almost every day for the past 65 years, so not being able to see her now is very, very difficult."

For Van Hefty, the abrupt end of physical contact with her mother has been especially difficult to accept. As her mother's Alzheimer's has advanced and she has lost much of her ability to talk, the hugs and the gentle massaging of hands have become a way for the family to communicate their love and affection. On many evenings, Van Hefty would braid her mother's long hair as they watched TV in her room, much as she did when she was a girl, and they would pretend their living room was a beauty school.

"Losing that gift of touch is the hardest part," she said, tearing up. "Just holding my mother's hand ... I feel that's one thing that I can still give her, and even that's been taken away."

chris.serres@startribune.com 612-673-4308 • Twitter: @chrisserres