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‘Essential’ caregivers lobby for greater access to loved ones in nursing homes

They say their loved ones are suffering from isolation.

Carol Jackson had a rare garden visit this summer with her husband, James "Pete" Jackson.  He has ALS and frontotemporal dementia and lives at Abramson Center for Jewish Life.
Carol Jackson had a rare garden visit this summer with her husband, James "Pete" Jackson. He has ALS and frontotemporal dementia and lives at Abramson Center for Jewish Life.Read morePat Mackenzie

On their last normal visit at the Abramson Center for Jewish Life, Carol and Pete Jackson held hands and cried.

They thought it would be two weeks before Carol could visit again. A retired clinical psychologist, James “Pete” Jackson has two fatal diagnoses — ALS and frontotemporal dementia — so the couple, married 26 years, don’t take time together for granted.

It has now been six months since Abramson and other long-term care facilities in Pennsylvania shut down to visitors, to protect residents from the coronavirus. Carol Jackson, a physician assistant from Harleysville who used to visit her husband every day, has managed to have a handful of window and garden visits. Abramson is closed to visitors again because of a couple of positive tests for COVID-19.

Jackson is fed up.

“Six months away from each other is a long time when you’re looking at a five-year prognosis or a seven-year prognosis,” she said. Her husband was diagnosed in 2015.

Jackson, 65, has joined Caregivers for Compromise, a Facebook-based group that argues that “essential” caregivers — people who were actively involved in visiting family members in long-term care before the pandemic — should be allowed to see loved ones if they follow the same safety rules as staff.

“I come to work every day to take care of some really vulnerable individuals,” said Jackson, who works at Cancer Treatment Centers of America. “Yet I can’t be with my husband. It just doesn’t make sense to me.”

Caregivers in the group, which has more than 10,000 members nationally, argue that months without visitors have made their loved ones more depressed and weak.

“The isolation is causing more harm than the virus. We’re watching through the window that our loved one is giving up,” said Rebecca Cordner, an Oreland woman whose 88-year-old mother has stroke-related cognitive impairment. Her mother lives at Artman Lutheran Home in Ambler.

“All of these precautions are meaningless if our loved one is going to die of isolation,” Cordner said.

The group’s Pennsylvania chapter, which has about 300 members, plans to ask the state to loosen its rules at a protest Thursday in Harrisburg. Swayed by the group, State Sen. Bob Mensch, who represents parts of Berks, Bucks and Montgomery Counties, last month introduced a bill modeled on Indiana regulations that would expand visiting rights for essential caregivers. An online group called demonstrated for similar rules in New York over the weekend.

New Jersey announced essential caregiver rules last month.

The national group was started this summer by Mary Daniel, a Florida woman who made national news when she took a part-time job as a dishwasher at her husband’s nursing facility so she could see him. Her story, she said, helped persuade Florida Gov. Ron DeSantis to sign an essential caregivers bill on Sept. 1.

The Pennsylvania Department of Health this month added new rules for “compassionate” caregivers. These designated family members are allowed to visit if their loved one experiences significant changes in two health measures. They must wear protective gear and test negative for the virus.

Jackson said that’s not enough. “It shouldn’t take until someone is going downhill,” she said. “The idea is to preserve their current status by having an essential caregiver involved.”

The coronavirus has devastated many Pennsylvania nursing and personal care homes. Sixty-seven percent of the state’s 7,837 deaths involved residents or staff of senior facilities. Nate Wardle, a health department spokesperson, said the state has made “deliberate and often small [changes] in order to ensure no adverse consequence comes to residents and staff.” The state also sped up the timeline for resuming visits after someone in a facility tests positive.

Experts agree that most coronavirus outbreaks in senior facilities trace to staff members. Risk would clearly increase for staff and residents if yet more people came in. The question is how to balance that increased risk with the good caregivers do. They provide care, stimulation, love, and another set of eyes on quality of care.

“Do you think we’re going to be any less conscientious than workers when our loved one is in there?” asked Kim Boddy, whose 90-year-old mother lives in Hillcrest Center in Wyncote. There’s much her mother, who has advanced dementia, doesn’t understand, but Boddy can communicate with a hug. . “It’s hard to describe it, but people need that,” she said.

Pennsylvania groups that represent older adults or senior facilities agreed that residents are suffering. They said, though, that components that are essential for expanded visitation — adequate protective equipment like gowns and masks as well as rapid, accurate tests for the virus — are not yet available everywhere.

Val Palmieri, chief operating officer for Abramson, said she’d like to let family members visit, but can’t do it without regulatory changes. Even then, it would be hard. Abramson has 370 residents and 500 employees. That’s a lot of testing and protective gear.

Christian Bergman, a geriatrician at Virginia Commonwealth University, is chair of a task force of AMDA-The Society for Post-Acute and Long-Term Care Medicine. It will soon announce new recommendations for expanding visitation by essential caregivers. “What we’re doing right now is not enough,” he said. Residents are losing weight and strength. Behavior problems have worsened. Staffing has been a problem. Essential caregivers could be a big help during meals and evening routines.

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Daniel, whose 66-year-old husband was diagnosed with early onset Alzheimer’s at 59, said quality of life needs to be a higher priority. “My husband has a terminal illness,” she said. "He is going to die. … He needs me now. Today is his best day.”

The new law allowed her to quit washing dishes and visit as his wife again.