When news broke that Lancaster County was entering the green phase of Pennsylvania’s reopening plan, 87-year-old Brethren Village resident Helen Keller called her children, thrilled at the thought of finally seeing them in person again.
They, in turn, were heartsick at the reality that for her and other nursing home and personal-care residents, there’s no clear end in sight for restrictions that since mid-March have separated them from everyone they love.
Loneliness is consuming their parents, they said, and, despite the toll COVID-19 has taken on homes here — claiming close to 300 residents’ lives in a county with roughly 7,700 nursing and personal care home beds — they worry that despair caused by visit bans may end up being worse than the coronavirus.
Such concerns are widespread, according to Jamie Schell, one of four local representatives of the state’s ombudsman program, which advocates for the rights of residents and their families.
“If this is my life, (and) I can’t leave this room, I don’t want to wake up in the morning,” she said. “We get tearful calls: ‘My mom just said this. Can we get in there? I have to see her.’”
Before the pandemic, Schell said, many families visited their loved ones multiple times a week, regularly helping feed them and otherwise serving as caregivers.
Now, Schell said, despite efforts to stay connected, she’s hearing that a lot of residents are interpreting their isolation as abandonment.
“The overall concern we’re hearing is not being able to sit next to a loved one who’s in end-stage of life," she said. “With this population time is of the essence, and it’s precious. Husbands want to sit next to their wives. A wife wants to hold a husband’s hand. They want to see their grandkids. They want to be in the same room with what time is left.”
Nursing homes aren’t free to set their own visitation policies during the pandemic. They’re directed by the Pennsylvania Department of Health, which, following similar federal guidance, recently said in-person visits can resume once a home has at least 28 consecutive days without a new case of the virus.
Even then, the department says, social distancing and mask protocols must be followed the whole time, with staff monitoring.
End-of-life visits are permitted, and, if a nursing home allows it, so are window visits, where visitors remain outside but can see residents through glass.
What bothers the Keller family most, they said, is that even though their parents are at Brethren Village, they can’t spend time together. Helen Keller is in personal care, and her husband, 88-year-old Harold Keller, is in skilled nursing. They’ve lived at the retirement community for about 12 years.
It has been more than 100 days since the lockdown started, their children said, and the closest their parents have come to being together is three supervised visits through glass. They appreciate Brethren Village’s efforts with those visits, as well as phone and video calls, they said, but they hope hearing how much seniors are suffering will lead to changes in the regulations separating couples in homes across the country.
“It just seems really odd that staff gets to go home and be with their families and residents can’t be with their spouse,” said their son, Tim Keller.
‘Hard, unprecedented times’
In an emailed statement, Brethren Village spokeswoman Tara Marie Ober said the retirement community has to follow the health department’s direction, and noted that the department recently confirmed that the nursing home’s visitation protocols are “correct and appropriate.”
“We know that families are craving in-person visits where they can touch and hug their loved ones,” she wrote. “We also understand, and have seen first-hand, how brutal COVID-19 is on seniors, particularly those with underlying health conditions."
At last report, 13 Brethren Village residents had tested positive since the beginning of the pandemic, all of them in skilled nursing memory support. Of those, seven died and six recovered. Fifteen staffers also tested positive in recent months. The retirement community's campus has more than 330 nursing and personal care beds, and about 1,200 residents overall, including those who live independently.
“We know these are hard, unprecedented times,” health department spokeswoman Maggi Mumma said in an email. “We developed this guidance through collective input from residents and families, stakeholders, academia and facility representatives to allow safe visitations with strong public health measures to balance the mental and physical well-being of Pennsylvania’s most vulnerable residents.”
The health department recommends the ombudsman program and its weekly online virtual family council meetings to residents and families struggling with not being able to see each other.
Schell, who is a member of the virtual council, describes it as a good source of information and support network for families. And, she said, while there are no easy answers through this hard time, ombudsmen are happy to help families address their concerns. In a few cases, she said, they have even helped families through the difficult process of removing a loved one from a facility in favor of home care.
Dr. Leon Kraybill calls the situation an awful balancing act between the unequivocally harmful nature of isolation, the devastation the illness has wrought, and the reality that what residents, family and staff do has life-and-death consequences for many others in a facility.
Chief of Penn Medicine Lancaster General Health’s geriatric division and post-acute care, Kraybill is also medical director at Luther Acres in Lititz, where the coronavirus has claimed 29 lives.
To start allowing family members back in homes to visit, he said, it’s important that rates of COVID-19 infection in the area’s general population be low.
Right now, he said, Lancaster County’s rates are not nearly low enough — and “I do not hear enough broad community support of wearing the masks that I think would allow us to get to that low level.”
“We are still in the midst of a significant crisis, and we have to take significant steps that we have never done before, and those steps for safety have consequences,” he said. “There’s no good way around it.”
He urged families to take any steps they can to avoid being infected — social distancing and masks — so they could visit “at the earliest opportunity if things open up.”
In the meantime, he advised them to do everything they can to maintain the connections that are so vital to residents.
“Call in regularly,” he said. “Leave phone messages. Send cards. Come to the window. Record a tape of what’s happening in your lives.”