Lillian Johnson, 77, pictured outside her East Meadow, New York, nursing home. Because of Covid-19 restrictions, her son was unable to visit her for two months.
Lamont Johnson lives just about two miles from his mother’s nursing home in Long Island, New York.
He has not been able to visit her for about two months.
The reason: Covid-19 had spread to his mother’s residence, in the hamlet of East Meadow, ultimately resulting in 39 deaths.
Like other nursing homes and assisted living facilities throughout the country, the residence stopped allowing family members to visit elderly or ailing loved ones as the novel coronavirus spread across the nation.
But the stress of the situation was amplified by a lack of communication, Johnson said.
Oftentimes, no one would answer the phone when he called the nursing home. That meant Johnson did not know how his mother, Lillian, 77, who suffers from dementia, was doing day to day.
Meanwhile, Johnson said he noticed something else: a lack of broad access to data on exactly how many nursing home residents have been tested and how many have passed away.
Johnson, a village trustee in Hempstead, New York, joined a group of other Nassau County officials to call for a federal investigation.
“We have to do more to protect the people, to love the people that took care of us when we were young,” Johnson said.
Despite the risks, Johnson said he can’t wait to see his mother. “I would go today if I could,” he said.
Many families with loved ones in nursing homes and other care facilities are desperate to be able to visit them again. But that so-called return to normalcy will take time, and will likely be a lot different than before.
“Our society will be forever changed by the Covid-19 in terms of how we really think about our physical contact with our family members,” said Dr. XinQi Dong, director of the Institute for Health, Health Care Policy and Aging Research at Rutgers University.
BrightStar Senior Living’s assisted living community in Fort Wayne, Indiana, is among the company’s residences that have recently overhauled their rules in response to Covid-19.
BrightStar Senior Living
At BrightStar Senior Living, with multiple assisted living facilities in the Midwest, battling the coronavirus has been a challenge, said Brad Jacobsen, director of senior living project development.
At one facility, two people who have died tested positive for Covid-19, while seven others tested positive and have recovered.
“We put all our protocols in place, but people had been affected,” Jacobsen said. “So 14 days later, we had the next outbreak of folks testing positive.”
It was a very stressful time, Jacobsen said, that prompted them to put extreme measures in place at all of the company’s buildings.
Now, all residents are isolated and no family members can do in-person visits. Additionally, all employees have to wear full personal protective equipment at all times and they are tested before every shift. Staff must also fill out a questionnaire indicating any symptoms they are experiencing.
Residents’ lungs and temperatures are tested twice a day, Jacobsen said.
Family visits now happen over platforms like Facebook or Zoom a couple of times a day. Window visits, where they can see each other while talking over the phone, also occur when possible.
Now that residents are healthy, social distancing activities in activity rooms or hallways are starting again, he said.
But how soon in-person family visits begin again depends largely on what new protocols need to be put in place, particularly when it comes to testing.
“Everybody is just trying to do research at this point to find out what the new normal is going to be,” Jacobsen said.
Nurse practitioner Sharlene Gan with Los Angeles Christian Health Centers takes a swab sample from James Ollie at the Midnight Mission of Skid Row Los Angeles, testing for Covid-19 on April 30, 2020.
Al Seib | Los Angeles Times via Getty Images
With tests still in development, virtual visits over Zoom and WebEx will likely be the norm for the foreseeable future, Dr. Dong said.
Going forward, family members should be prepared to undergo tests in order to visit loved ones.
But there are many questions that need to be answered before such protocols are put in place.
Covid-19 tests vary widely in efficacy, and some can have high rates of false negatives. Meanwhile, results can either take hours or days.
“We really don’t understand well enough to know the sensitivity and specificity of those tests to know what is the best kind of test,” Dr. Dong said.
Antibody tests, which test for past infection, can also be inconclusive. “If we don’t test at the right time, we miss the whole boat,” Dr. Dong said.
For nursing homes, more big questions loom, according to Dr. Dong. Who will pay for the tests? What happens when a worker tests positive and then has to be out for 14 days? Who will replace them?
Nursing homes in New York State have already been forced to try to tackle these issues now that Gov. Andrew Cuomo has made it mandatory for nursing home workers to be tested twice per week.
Ridley Epstein, 9, and her grandmother, Donna Forsman, 78, say goodbye after chatting via cell phone during a through-the-door visit at Brookdale Arlington Senior Living in Arlington, Virginia.
Jahi Chikwendiu/The Washington Post via Getty Images
For families, questions around tests are just scratching the surface of the bigger issues they face as they try to find the best care for their loved ones.
Spikes in coronavirus cases may prompt them to question whether they should relocate their family members to facilities with less exposure. Or, they may hesitate to put a loved one in a nursing home or assisted living situation at all, for fear of exposure to the virus and not being able to visit.
Long term, that’s not a solution, said Thomas West, partner at Signature Estate & Investment Advisors. “There aren’t enough professional caregivers to take care of everybody in their home,” he said.
West said it should be expected at this point that a facility likely has Covid-19.
“I would be very worried if there was runaway Covid,” West said. “If you happen to be one of the hot spots where 25% of your population, 30% of your population has it, that means that somebody didn’t control something when it went in there.”
What you should expect is really good communication about what is being done to protect your loved one and minimize the spread, West said.
If you choose to move a family member to a new facility, you need to be sure that it’s the best fit for them. Some patients, particularly those with dementia, can be traumatized by those transitions, West said.
Admittedly, finding a new normal for care will take time.
“My dream is that nursing homes become a thing of the past, in the way that we do them now,” said certified financial planner Carolyn McClanahan, a physician and director of financial planning at Life Planning Partners.
One idea would be to have more inter-generational communities, which could help promote better health for older adults, she said. Another approach could be creating a community health workforce that could make visits to the elderly in their own homes.
For now, the biggest hurdle for many is still just getting to see their relatives. One of McClanahan’s clients sneaks in visits with her mother, who is in assisted living, by waiting around the corner during recreational breaks outside.
Others are just starting to get official permission to see their loved ones, in a first glimpse on how post-Covid-19 care will go.
Johnson recently got his long-awaited chance to visit his mother. The appointment was scheduled by the nursing home and took place outside, with both wearing masks and a six foot distance between them.
The happy occasion was capped off with more good news. Johnson’s mother, who tested positive in a recent antibody test, has recovered from a recent lung infection.
Johnson credits Gov. Cuomo’s new rules for twice a week testing and preventing patients with Covid-19 from reentering nursing homes for helping to improve the situation.
“He did a good job,” Johnson said. “He saw that it was a problem and he fixed it.”