The pandemic led some families to pull parents out of long-term care facilities; now what comes next?
By RACHEL CHASON | The Washington Post | Published: August 21, 2020
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Dena Ducane had to make a decision, but every option felt wrong.
She had pulled her mother, Rhoda Dobrovich, out of a memory-care facility in Santa Fe after watching her grow despondent during weeks without visitors. At home with Dena, Rhoda stopped crying and started smiling again.
But visitors were still barred from long-term care facilities in New Mexico because of the novel coronavirus. There was no end in sight to what Dena had thought was a temporary situation, and on this summer night, Rhoda had fallen out of bed, again.
So Dena checked for injuries, lifted her mother back onto the twin mattress set up three inches from her own bed, and considered the possibilities.
For approximately 2.5 million elderly Americans in long-term care, the threats posed by the coronavirus are twofold: rampant deaths and an unprecedented era of isolation.
Visitors were banned at long-term care facilities nationwide in mid-March, and communal dining and activities were mostly canceled. While those changes may have been necessary to slow the spread of the virus, medical experts say they proved devastating for the mental and physical health of residents, particularly the more than 40% who have Alzheimer's or other forms of dementia at such facilities.
For Rhoda, 78, who started losing her memory five years ago, isolation led to vacant stares and bouts of tears. Her best friend in memory care, Nancy Bartine, was slipping away, too. She ate less, slept more and had trouble recognizing her daughter, Katherine Miller, during visits held on either side of a glass windowpane.
Sometimes together and sometimes on their own, Dena and Katherine had wrestled with what was best for their mothers, and what made sense — financially, practically, emotionally — for themselves.
Dena, 55, brought her mother home in early June after watching her curl into an aide's shoulder during a window visit, inconsolable. By then, Nancy, 80, was too weak for Katherine to do the same.
To care for Rhoda, Dena mostly had to stop working in real estate investment, shifting responsibility to Alison Jayne, her business partner and live-in significant other. Dena and Alison had less time together, and far less privacy.
In the time they did have, Dena was exhausted from constantly watching Rhoda, including helping her use the bathroom and shower.
Lying awake, Dena wondered whether she should send her mother back to MorningStar Assisted Living & Memory Care or search for another facility outside of New Mexico that would allow visits.
"I'm wearing out," she said the next morning. "I struggle greatly and feel 100% responsible for her life. I don't know what to do."
There have been more than 70,000 deaths in long-term care facilities since March due to covid-19, the disease caused by the coronavirus — 41% of all virus-related deaths reported nationwide.
But experts say the true toll of the deadly pandemic on the elderly is much higher.
Geriatrician Michael Wasserman said cases of neglect and other issues have gone unnoticed because when visitors were barred, residents lost their most important watchdogs: families and the local ombudsmen, who are supposed to regularly visit long-term care facilities and investigate complaints. At the same time, the mass shutdown has created a deep social isolation that experts say has contributed to soaring rates of depression and anxiety and general loss of the will to live.
"We are literally hearing of people dying of loneliness," said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care.
A Facebook page for caregivers that Dena checked constantly offers a window into the grief: A woman in Missouri found her ex-husband, who suffers from multiple sclerosis, lost the use of his legs because he wasn't getting physical therapy. A woman in Texas realized her mother developed bedsores. A woman in New Jersey said her mother had lost 20 pounds.
Wasserman is part of a group of experts pushing for the federal government to provide the testing and personal protective gear to make it safe for families to visit their loved ones during the pandemic. Such visits, they say, can be as important to patient health as keeping the virus at bay.
At the Los Angeles Jewish Home, where Wasserman is the medical director, a woman was so desperate to see her mother that she broke in. It turned out she had the coronavirus, which led to an outbreak. For Wasserman, the incident showed both the extent of desperation and the difficulty facilities face keeping residents safe.
After months with no visitors at all, 32 states, including the District of Columbia, Maryland and Virginia, have begun allowing outdoor visits for family members at facilities, with a variety of rules and conditions. New Mexico gave the green light to very limited outdoor visits early this month.
But Katrina Hotrum-Lopez, New Mexico's secretary for aging and long-term services, said protecting residents from the virus means continuing to bar inside visitation until more testing is available and positivity rates are lower.
Before the shutdown, Dena and Katherine were regulars at MorningStar, an 85-bed facility that their mothers moved into shortly after it opened last year.
Both Rhoda and Nancy were fiercely independent women from New Jersey who loved talking, even if what they said didn't always make sense. They often sat together at meals, and Rhoda would push Nancy's wheelchair in loops around the facility while Nancy smiled and offered high-fives.
Rhoda, who divorced when Dena was in high school, traveled often for her job with an airplane manufacturer but was always there for her two daughters and adored by them and their friends.
Nancy was an Air Force wife who held the family together through frequent moves, Katherine said. An avid outdoorswoman, she eventually divorced her husband and moved West with the love of her life, a woman with whom she built a home on 20 acres in the foothills of the Ortiz Mountains, surrounded by horses, dogs and open space.
When MorningStar barred visitors on March 13, Dena found herself checking the camera she had installed in Rhoda's room at all hours. Rhoda was usually there, sitting by herself.
Instead of the long walks they used to take in a nearby park, Dena stood outside her mother's window and tried to speak through the glass. Rhoda soon had trouble standing during the visits.
Dena worried she was pushing off oncology appointments for Rhoda, who had beaten colon cancer. But if she took her out of the facility to see the doctor, then Rhoda would have to spend 14 days fully isolated in her room, which Dena worried would make her deteriorate even faster.
As the weeks dragged on, Dena wrote letters to government and MorningStar officials urging them to allow one relative of each resident to visit.
"These conditions are just as detrimental as the virus itself to this population," Dena wrote to Democratic Gov. Michelle Lujan Grisham, who had not been able to see her own mother at an assisted-living facility in Albuquerque. "You are saving my mother from COVID19, but I am losing her to the disease."
MorningStar spokeswoman Lorna Lee said the facility complied with all state and federal regulations. The separation of seniors from their friends and family "has been emotionally painful for them and for us to endure," she said, "despite our universal understanding of the reason."
Dena, Katherine and a third woman whose mother was at MorningStar considered hiring a caregiver and renting a house for their mothers where they could visit. Then they learned their plan required a license.
Meanwhile, Nancy, who had never slept much before the pandemic, was napping for hours. Her speech sometimes sounded garbled. Past moves had been hard for her, and Katherine wondered whether pulling her out would do more harm than good.
Wrestling with the same questions, Dena started talking with Alison about bringing Rhoda to live with them and acquiring the things that would be necessary: a handle bar for the shower. Gloves. Adult diapers. A mattress.
The day before Mother's Day, MorningStar arranged a parade so patients could sit outside and see their loved ones drive by. Dena and Alison made signs they attached to their car with duct tape: "We love you Rhodie," "Thank you staff."
They bought heart-shaped balloons and handed them out to other families. As they drove slowly around the circular driveway, they shouted and waved: "Rhoda!" "Rhodie!"
Rhoda looked blankly as the nurses tried to cue her.
"It's Dena, honey. Dena, your daughter," one said. But Dena and Alison were wearing masks, and Rhoda did not seem to recognize them.
Nancy appeared more aware, cheerfully waving as Katherine yelled out of the sunroof of her car, "I love you, I love you, I love you!"
A week later, MorningStar reported its first coronavirus cases: three residents and two staff members.
Even window visits were put on hold.
Katherine tried to schedule video visits, but aides kept saying Nancy was asleep. Relatives were allowed back for window visits after a week. When Katherine went to the facility, two weeks after Mother's Day, she found Nancy visibly thinner and unable to recognize her.
Nancy had not been eating, her daughter learned, and could no longer feed herself; she slept all day and was no longer able to stand up on her own. Hospice services began in late May. Even then, Katherine was told she was not allowed to visit.
Dena decided to bring her mother home June 6. "I am not certain how we will navigate this transition," she wrote to the facility. "My intention is that this is a temporary solution, and that Mom will eventually re-enter the MorningStar community."
Nancy remained at the nursing home and continued to deteriorate. Katherine asked if she could get a coronavirus test and visit wearing protective gear. MorningStar told her no, she said.
"I desperately need to see her more," she texted the head of the memory-care unit in late May.
"My last two FaceTime calls she didn't say anything or even smile," she texted June 11.
"Any chance my mother is awake? I have been unsuccessful in seeing her for over a week because every time I have tried she is asleep," she texted June 16.
"Can I call you?" the head of the unit replied, before informing Katherine her mother was dying and she could come for a two-hour visit.
Lee, the spokeswoman for MorningStar, said the state health department had advised facility administrators to wait until death is "imminent" before family is permitted to visit in person. She said staff in all MorningStar communities help "to arrange video chats and phone calls among families as often as desired."
Katherine found a hospice house where she could stay with her mother full time and brought Nancy, heavily sedated, to the facility on June 17. She died June 20.
"I feel like my mom passed away from covid even though she didn't have covid," Katherine said in an interview. "The circumstances around it made it impossible for me to know what to do."
In a statement, Lee said: "We offer our deep condolences to the family. We loved her too."
At home with Dena, Rhoda's bouts of sadness were replaced by giggles. On FaceTime calls, Dena's sister said their mother's skin looked like it was glowing. She sometimes had moments of lucidity in which she seemed almost like her old self, at one point telling Dena: "You're really doing a favor for your mother."
There was at least one good moment every day. Laughing in the shower. A funny comment Rhoda would make on their walk. The game they would play passing balloons back and forth. Rhoda helping Alison make prosciutto pizza.
But it was harder than Dena thought it would be. Every morning, she had to coax Rhoda out of bed and to the shower. Some days, she had to explain what the shower was. She constantly watched Rhoda, who would try to put dishes away or head up the stairs or overturn a bowl of quinoa. At one point, her mother called her "a real pain in the ass."
June turned into July, and cases spiked in New Mexico and other states. Then July turned into August. Dena felt betrayed by a system that seemed incapable of protecting people like Rhoda.
She paid MorningStar the full $6,000 rate in June and July, and a discounted $2,000 rate in August, to ensure Rhoda would have a room to come back to.
She considered a facility in Florida, 1,800 miles away, that allowed family visitation and more interaction among residents.
Alison, meanwhile, spent hours on the phone with the state ombudsman's office, demanding to know why visitors had not been allowed back into the facilities and when they would be. Zack Quintero, the interim state ombudsman, said his team had been conducting virtual check-ins with facilities, adding it has been "heartbreaking" not to be able to go inside.
Who, really, was looking out for people like Rhoda, Alison and Dena asked each other. All officials seemed to talk about was stopping the spread of the coronavirus, not otherwise ensuring the health of residents.
"But at what cost?" Dena often found herself thinking.
In the first week of August, a friend texted Dena and told her to turn on the television in time for Lujan Grisham's news conference on visitation. Dena at first felt hopeful. But as she listened, she realized the governor was describing baby steps.
Visits would be allowed only once a month, and only at facilities without coronavirus cases. They could happen only through open windows — previously, windows had to be closed — or outdoors, with plexiglass separating residents from their loved ones. Social distancing and masks were required.
"I want to hug my mother, I want to hold her hand," the governor told reporters, acknowledging any return to normalcy was going to take a long time. "Still not allowed. I present too big a risk."
Dena, who earlier that day had caught Rhoda trying to eat stones as they sat in the backyard, thought about how much attention her mother needed. She thought about how she had done everything for her mother during visits to MorningStar before the pandemic — clipping her nails, buying her groceries and new clothes, and curling into her bed for movie nights to help her get to sleep.
She was glad that, for some families, Lujan Grisham's announcement might make a difference. For her and for Rhoda, one visit a month, through plexiglass, was not enough.
For now, at least, her mother would stay with her.