“I think she may still remember me, but I can no longer know for sure,” he said.
Presbyterian Homes offers families “remote” visits with loved ones by iPad, but her severe Alzheimer’s disease and failing eyesight make those connections futile. He yearns to hold her hand.
“It’s just frustrating,” said Locke, of Vadnais Heights. “I’m sure she’s getting great care. They’re looking at keeping her safe, which is fine. But the political leaders are not looking at how to reconnect people. I would just love it if the politicians would put this on their radar.”
John Paul Hileman’s seizure disorder has left him with permanent mental and physical injuries, but not without a desire to go shopping, run errands or visit with others.
Hileman, 52, who has lived for 11 years in a health and rehabilitation center in St. Paul, feels it’s unfair that he and other residents of long-term care centers can no longer entertain family. He’s worried that weeks of limited socialization are aggravating mental health concerns, for himself and others.
“Those of us who are already screwed up, it’s making us get more screwed up,” said Hileman, whose four siblings used to drive in from out-of-state and are overdue for a visit. “What we need to know is when they’re going to start lifting all these restrictions,” he added. “There’s some people who want to get back to a sense of normalcy.”
Across Minnesota, that’s a common frustration among the elderly and infirm as well as their loved ones, albeit outweighed for many, if not most, by a greater concern for personal safety. Families and care providers must balance their desire to see relatives against the reality that the novel coronavirus poses a special threat to seniors and residents with underlying health conditions.
“Absolutely, (isolation is) a concern to our providers,” said Jodi Boyne, a spokesperson for LeadingAge Minnesota, a statewide caregiver association. “Staff in our settings are doing all that they can to ensure residents are engaged, and active and have human contact, even though restrictions are taking place.”
State, federal directives
As of May 18, nearly 600 of 731 confirmed COVID-19 deaths have been residents of nursing homes, assisted living centers or other long-term care facilities. The vast majority of the dead are over age 60, and almost all have underlying health concerns.
With limited end-of-life exceptions, “there is a strict ‘no visitation’ guidance in effect that both nursing facilities and assisted living have to follow — federal and state directives,” said Patti Cullen, CEO and president of the Care Providers of Minnesota, another industry association.
Some of those rules could yet be relaxed on a state by state or even a building by building basis.
On May 18, the Centers for Medicare and Medicaid Services released three-phase guidelines on reopening nursing homes that boil down to this: Of all institutions, nursing homes should reopen last, or 14 days after the rest of the economy.
The guidelines also emphasize the need for universal testing of residents and staff, sufficient staffing and personal protective equipment, no known cases within the facility and access to a hospital with patient capacity. For most institutions, that would be a high bar to meet at this time.
Even if it were not mandated, many residents of care facilities might voluntarily choose to maintain social distance from others, but that’s still cold comfort against loneliness and isolation. Then there are residents like Hileman, who are still largely mobile (he sometimes uses a wheelchair) and antsy for human interaction.
“I see the expressions on residents’ faces that it’s taken a toll on them,” he said. “We can’t even speak to some of the residents because we have to stay in our rooms, and have to wear a face mask when we go to the nurses station or drop off our mail or see the social services worker.”
For Hileman, there’s no more trips to the grocery store, or even walks beyond the end of the driveway of his care grounds.
“We feel like we are in a state prison situation,” he said. “They’re going way too far and overboard on some of these precautions that are being added.”
Too much liability?
In some cases, Cheryl Hennen agrees.
“We need to be very conscious about the effects of isolation, and we need to mitigate the virus spread,” said Hennen, the state ombudsman for long-term care, whose office is part of the Minnesota Board on Aging. “There needs to be a balance. We have heard from residents who are not allowed to see their loved ones, ‘Is it worth it to go on living? Maybe I should leave this earth.’ ”
She said 20% of the complaints her office receives are related to isolation and mental health, and some sites are erring on the side of caution.
She recalls the complaint she received from a woman whose mother was housed at a care facility and clearly not doing well. Even though “compassionate care” and “end-of-life visits” are allowed during the pandemic, the facility declined to let her see her mother in person.
Then her mother died, and she was still blocked from visiting. The body was sent away for cremation.
“People are coming to us to gain access when their family member is very, very sick,” Hennen said. “I’m not saying all facilities, but some are taking a very strict stance (against) this. We have had some areas where the facility is not allowing window visits at all.”
Locke suspects political and financial liability is at much at play as science. He longs to wheel his wife, who uses a wheelchair, “outside in the warm, fresh air … where the risk is near zero,” but “no one in authority, from the governor down to the local head administrator of the home, can afford to go out on a limb to authorize a family visitor.”
Nancy Schwartz, Life Enrichment Services Director for Presbyterian Homes and Services, said her staff has been doing all it can to help break through the isolation. They’ve set up video chats, arranged window visits and encouraged family members to call, text, email and send cards.
Family members are also encouraged to follow along on a Presbyterian Homes Facebook community. “It’s helpful and reassuring when they see pictures of their loved ones engaged and smiling,” Schwartz said, “and so our communications and life enrichment teams are working overtime to post the many moments of joy our residents have experienced over these past weeks.”
Families and friends can also drop off special packages for loved ones that include notes, favorite snacks, a plant to care for, photos and stories to reminisce about, and community volunteers are being recruited for pen pals and praying circles.
More leeway, no visitors
Residents of independent senior living facilities tend to have more leeway in being allowed to come and go as they please, but most sites have discontinued allowing visitors and require seniors to wear masks when they enter or exit the building.
For two years, Christopher Mabry, 70, has lived in the Ebenezer Tower Apartments, a senior living high-rise in South Minneapolis, who lived on the streets for more than a decade before finding stability there.
He prides himself on keeping active. Until the pandemic canceled everything, he had been gearing up for his third season as a culinary worker at Target Field. But now he’s socially distancing by choice.
“I just go in my apartment and I don’t come out until I have an appointment or something,” said Mabry, speaking from behind his protective face mask while returning to the towers from an errand on May 18.
If he’s got a complaint, it’s about access to common areas within the high-rise.
“They’ve closed down everything. You can’t go to the exercise room, the library, the computer room,” he said. “It seems like they would at least let us have that, and let us socially distance (in there). They just made all the decisions for you.”
James Gelmete, 71, has lived in the towers for three years. Most of the open frustration about mask-wearing in common areas has subsided as the virus has crept closer, he said.
There were complaints from others “in the beginning,” Gelmete said. “I don’t see nothing wrong with it. When you see how it’s hit other states, the Midwest has been lucky.”
Still, he’ll be happy for the day when the high-rise resumes social hours and group outings such as shopping trips. “It’s a good place to live,” he said.
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