A Missouri man worried about his mother’s weight loss after she spent a year in a nursing home under COVID-19 lockdown without his daily peanut butter shakes.
In Florida, a devoted husband celebrated his final wedding anniversary on opposite sides of his wife’s nursing home window.
A woman in the Bronx, New York, blamed her mild heart attack on stressful months of separation from her mother.
“I couldn’t hug her for Mother’s Day, for the whole year,” Lillian Marrero said.
The residents of America’s nursing homes and assisted living facilities, the first and hardest hit by the COVID-19 pandemic, offer early evidence of the vaccines’ power to end the threat. Outbreaks in nursing homes have dropped by about 90% since the winter’s peak, and their residents and staff were placed at the front of the line for vaccination.
CDC:Nursing home residents added to first phase of COVID-19 vaccine rollout
Government regulators this week mapped out how nursing homes can reopen to visitors more widely, a year after abruptly closing their doors. The full toll on the elderly and frail inside is only beginning to come to light.
Grassroots advocates lobbied the Centers for Medicare and Medicaid Services to ease restrictions intended to protect against the virus responsible for more than 1 million cases among nursing home residents and staff and at least 131,700 deaths. Those numbers do not capture what happened in assisted living facilities or the physical and mental consequences of isolation.
Over the past week, black-and-yellow posters have been on display in cities nationally as advocates pressed for greater access to loved ones in nursing homes and more input in decisions. Their pointed message: “Isolation Kills, Too.”
“The cure for protecting these seniors could be worse than actually getting the COVID,” said Vivian Rivera Zayas, who co-founded Voices for Seniors when her mother died after she contracted the virus in a New York nursing home. “They are protecting them to death.”
The director of the CMS nursing homes division, Evan Shulman, said he has heard from residents who would rather die of COVID-19 than go any longer without seeing family.
“The second most heartbreaking thing about this pandemic, right after deaths, is the toll that the separation had taken on residents and their families,” he told advocates Friday during a webinar discussing the new government guidance.
The eight-page CMS memo says nursing homes “should allow indoor visitation at all times and for all residents.” The federal guidelines let people get close enough to touch, saying “there is no substitute for physical contact, such as the warm embrace between a resident and a loved one.”
There are some exceptions related to unvaccinated residents, how many within a facility have received vaccines and signs of a new outbreak.
Details drew concern that facilities can continue to limit the daily, hands-on access that families used to get as a matter of right. Advocates fear permissive words such as “should” rather than “must” could be exploited as loopholes.
USA TODAY is investigating the COVID-19 crisis in nursing homes and assisted living facilities. If you or your loved one experienced problems during the fall or winter outbreaks with the safety and rights of a resident, please contact Letitia Stein at [email protected]
They worry about whether the rules will be enforced. In its webinar with CMS, officials with the National Consumer Voice for Quality Long-Term Care noted states and facilities were allowed to ignore previous federal guidance supposed to give families more access.
Robyn Grant, director of public policy and advocacy, said restoring close contact such as hugs is a welcome step, but families think “there is still a long way to go.”
The more than 14,000 nursing homes and assisted living facilities represented by the American Health Care Association “cannot wait to safely reopen,” President and CEO Mark Parkinson said in a statement.
Federally supported advocates for nursing home residents in each state also are eager for the latest guidance to clear their path back in.
In recent weeks, they have been sharing stories including that of a Michigan man who stopped eating and refused to get up, trying to fake his own imminent death to qualify for a family visit. An Ohio woman told her state’s long-term care ombudsman she wanted to learn how to hold an unlit cigarette in her mouth, because her facility gives smokers outdoor time.
“Many residents have said they feel like prisoners,” said Mark Miller, president of the National Association of State Ombudsman Programs. In most states, he noted, representatives have spent the year locked out of facilities they would routinely visit to monitor conditions and assess complaints.
The result has contributed to a nearly 20% decline in the complaints logged last year into the Washington ombudsman office Miller directs.
Nursing homes did not have fewer problems, advocates fear, just fewer eyes and ears inside to spot them.
“When the cat’s away, the mice play. There has been a lot of playing going on,” said Brian Lee, executive director of the Families for Better Care advocacy group. “Unfortunately, that has been bad for the residents.”
Unpredictable rules spread with pandemic
A year ago, the lives of families such as the Florida Dulniaks were upended by the unpredictable and still evolving rules imposed in response to the dangers of COVID-19 in long-term care facilities.
On March 12, 2020, a sunny Thursday, Dennis Dulniak said goodbye to his wife, Nancy, after snapping photos of her smiling in her room, as he did to document their daily visits for two adult sons who live out of state. He barely saw her again for 28 weeks.
By the next day, CMS had issued guidance to curtail nursing home visitation. Assisted living facilities such as the memory care community where Nancy Dulniak lived near their home in the central Florida town of Oviedo fell under similar restrictions by governor’s orders.
The swift actions came after the nation’s initial COVID-19 outbreak ripped through a nursing home near Seattle, foretelling how vulnerable such institutions would be.
For Nancy, 68 years old and six years into a diagnosis of early-onset Alzheimer’s disease, it was the beginning of the end.
Long-term care residents could stay connected with loved ones by phone or video streaming, but Nancy found the technology confusing. Her husband cannot recall a single good virtual conversation.
A bright spot: A window visit in early June to celebrate their 47th wedding anniversary. For an hour and a half, despite a noisy road and reflections in the glass – which restricted not just airflow but also easy conversation – Nancy locked eyes with her husband.
From opposite sides of the window, each enjoyed spoonfuls of her favorite frozen custard.
As the nation eased up on COVID-19 lockdowns, her facility organized drive-thru visitation. Nancy could not place her husband’s masked face behind a car window, not even when he waved a balloon and a poster reading, “Nancy, I love you. Dennis.”
CMS tried to clear up confusion about how caregivers could safely see loved ones in nursing homes with guidance updates. By September, the agency indicated that nursing homes in communities with reasonably controlled COVID-19 rates should allow visits, although there were many limitations.
Florida by then had broadly reopened for business, but visitation was nowhere near normal at long-term care communities, which had latitude to restrict how many visitors were allowed at a time and how long they stayed and to require protective gear.
At Nancy’s facility, the options continued to be problematic. She struggled to communicate with her husband from a distance of 6 feet at a dining room table, where he had to wear a plastic shield and a mask over his face.
CMS had detailed circumstances allowing for “compassionate care” visits, which included when residents showed signs of mental or physical deterioration. This is how for about a month, Nancy saw her husband in her room twice a week at 11 o’clock for an hour. He brought a laptop and played music they once enjoyed live. She called him by his name.
In October, Nancy tested positive for the coronavirus. Though her symptoms were never severe, an outbreak ravaged her facility. She was evacuated. Her husband watched from the parking lot as she walked to a stretcher, then was loaded into a medical van.
Three weeks passed before he saw her again for a 30-minute outdoor visit. Nancy sat in a medical recliner. He spotted signs of bedsores on her feet. She pulled in frustration at the mask she was supposed to wear.
On Jan. 26, a week and a half after Nancy was moved to a new facility for better care, she took her final breaths. Her husband wasn’t there; he was down the hall from her room, awaiting a required coronavirus test.
He finds comfort that he was in the facility’s library when Nancy, a librarian, died alone.
This week, Dennis Dulniak helped set out a poster display in Orlando to call attention to stories such as theirs. He wants stronger protections for nursing home residents’ visitation rights in emergencies.
Restrictions during COVID-19, he said, “robbed me of my access to her.”
Enforcement of visit rights lacking
At another Florida assisted living facility, a woman made national headlines in July by taking a job as a dishwasher so she could see her husband. Mary Daniel channeled the attention into a grassroots push to help caregivers navigate the maze of uneven, irregularly enforced state and federal rules.
She started a Facebook page, Caregivers for Compromise, which has more than 14,000 followers and spun off separate groups for every state. “There is no consistency to what is happening out there,” she said.
Families for Better Care and other advocates hear complaints from multiple states about nursing homes refusing to follow the previous CMS guidelines on visitation rights. Enforcement has been lacking.
CMS did not respond to questions from USA TODAY this week asking about visitation concerns and enforcement, beyond sharing a news release with the updated guidance.
States have some discretion to limit visitation for health and safety reasons, the agency’s nursing home division director acknowledged on Friday’s webinar, and they need time to react to new guidelines.
“We expect this to be implemented,” Shulman said, noting that times have changed since CMS’ previous update on nursing home visitation came out just before a fall and winter surge of outbreaks.
At the start of February, Lee at Families for Better Care wrote to the agency asking for details about when and how nursing homes well into vaccination campaigns could expect to get back to pre-pandemic visitation.
Three weeks later, he received an emailed response, reviewed by USA TODAY, that did not answer his questions. An unsigned note from the agency’s nursing home division said, “I can assure you, we are eager to have residents reunited with their families, friends, and loved ones.”
Two more weeks passed before the agency updated its guidelines this week. Lee hopes they will push open the doors at facilities resisting visits, although he notes they apply only to nursing homes; assisted living facilities are left to state authorities.
The guidelines stop short of saying when families can expect a return to normal.
“Our rights are not really being enforced,” said Jeff Stephens, who has gone a year without visiting his mother in a Missouri nursing home. He said he feared window visits would do more harm than good for the 78-year-old suffering from dementia.
Stephens said repeated requests for compassionate care visits went nowhere. Keeping him out all year did not protect his mother from contracting COVID-19 either, although she did recover.
As of Friday, despite the new federal guidance, he had not heard anything about doors reopening from her nursing home in Cape Girardeau, an hour and a half south of St. Louis. He worries the facility can still limit visitation inside her room, even though being in a familiar setting matters to people with conditions such as dementia.
“I am anxious at this point,” he said. “I don’t know what to expect when I go back in.”
A ‘cruel’ wait as states review rules
To some families, every additional day of waiting feels like an unacceptable delay.
In the Bronx, Marrero was crushed this month when a staff member at her 84-year-old mother’s nursing home responded to her email asking to resume visits by noting that it could take a year to fully study the vaccine.
A window visit this week showcased how much her mother has declined. Before the shutdown, Hilda Torres walked so briskly she was considered a flight risk. Now she uses a wheelchair.
“She is not responding, she is not talking,” Marrero said. “It is heartbreaking.”
San Vicente de Paul Skilled Nursing and Rehabilitation Center, where her mother resides, held a party Friday to celebrate the milestone of getting 75% of residents and staff fully vaccinated. Administrators distributed $100 bonus checks to staff, calling the accomplishment notable in a facility whose residents and staff come mostly from Black and Latino communities in which experiences with discrimination have contributed to distrust of vaccine safety.
Officials at the facility run by the Archdiocese of New York’s health care system, ArchCare, want to open to visitors but said they need state permission in addition to the CMS directive. State rules as of this week told facilities to close for at least two weeks when someone tests positive. Physical distancing requirements conflict with the newly relaxed federal standard allowing hugs.
“The fact that family members have been more than a year without being able to see their loved ones, it is cruel at this point,” CEO Scott LaRue said. “Every day matters.”
The New York State Department of Health said it was reviewing the new CMS guidance.
The day after its release, Marrero once again visited her mother through a window. As she and other relatives said their goodbyes, her mother cried. Marrero left in tears, too, but holding out hope they will soon be able to hug again.
Letitia Stein is a reporter on the USA TODAY investigations team, focusing primarily on health and medicine. Contact her at [email protected], @LetitiaStein, by phone or Signal at 813-524-0673.