Activist group seeks to reform Covid-19 mandates in long term facilities

“The day you can hug your loved ones again” never came for the 5,009 North Carolinians who died of COVID-19 in long-term care facilities between June 25, 2020, and March 4. This death count doesn’t include the many more thousands of deaths occurring in facilities around the state unrelated to the virus but can be attributed to COVID-related isolation.

Loved ones of the deceased stood witness to the thousands of lives lost during a demonstration outside the General Assembly on March 10. They’re members of the growing group, Caregivers for Compromise. They are sisters, husbands, wives, and children of victims who died in LTCF isolation amid the pandemic.

Caregivers for Compromise is a national movement created in response to the COVID-19 lockdowns and champions the values of safety and accountability for people living in congregate care. The mission orients toward patient advocacy and care over one-size-fits-all mandates:

Our goal is not to “throw open the doors,” but to achieve a reasonable living condition for long-term care residents in a COVID-19 world and prevent as many deaths from COVID-19 protocols as from the disease itself.

Bob Wilson is a member of the N.C. Caregivers for Compromise leadership board and has lived in the Twin Lakes Retirement Community in Burlington, North Carolina for seven years. He and his wife, Sue, live in separate parts of the Twin Lakes facility. Bob is in the independent living building, and Sue is isolated in the nursing unit. Sue suffered a severe hemorrhagic stroke in 2016 and needs medical and therapeutic care to help with her recovery. Years ago, she started speech, physical, occupational, and musical therapy to re-learn everyday movements like eating, walking, and speaking. These seemingly relearned tasks added so much value to Sue’s life after the stroke. At the March 10 demonstration, Wilson told Carolina Journal that Sue’s progress in therapy “drastically declined in isolation.” Sadness claimed Bob’s kind eyes when he spoke of his wife and the quality of the care she’s received. Their effects have been profound and lasting.

Just like Bob, Sue’s therapists were unable to go into the nursing unit where Sue lives to assist with the maintenance of her recovery. Now confined to a wheelchair, Sue’s condition has begun to deteriorate. Her once conversational speech, which she worked so hard to relearn pre-pandemic, has turned into simple yes/no responses. Bob believes family members should be designated as “essential caregivers” to their loved ones because they’re capable of making progress that other people can’t do. As he puts it, “family members are anything but ordinary visitors.” If people like Bob were granted the status of ‘essential caregiver,’ it would allow them to care for their loved ones by providing the critical hands-on attention that they’re not receiving from the facility’s staff due to COVID-19 policies and restrictions.

Like many of the people that belong to Caregivers for Compromise, Bob is in pain. He decided to channel that pain into action and now serves on the Friends of Residents in Long Term Care’s Public Policy Committee. He works with committee members, including Bill Lamb, to come up with tangible solutions to ease emotional problems. Lamb served for two years as FOR’s executive director and currently is president of the organization’s board of directors. FOR was founded in 1987 and strives to improve the condition of residents living in long-term care facilities in North Carolina.

FOR’s work intersects with Caregivers for Compromise on a resource level. In a phone interview, Lamb told Carolina Journal that reform starts at the most basic level. “Staffing is the fundamental building block of care in these facilities,” Lamb explains. “Right now, facilities can’t be sued for not providing care because they don’t have adequate staff.” Lamb’s solution? Work hand in hand with care providers and fight for reform in the General Assembly.

Family members from Caregivers for Compromise like Bob Wilson fuel the fight on the streets. They stand in front of government buildings holding signs honoring deceased or impacted loved ones, telling their compelling stories to the media. But it’s the staff of FOR who work with them behind the scenes to get policy recommendations into legislators’ hands.

FOR is lobbying for two bills: Senate Bill 191, sponsored by Sens. Joyce Krawiec, R-Davie, and Warren Daniel, R-Avery, and House Bill 351, sponsored by Rep. Jimmy Dixon, R-Duplin. These bills, should they pass, have the potential to change the quality of care and attention North Carolina residents receive in long-term care facilities. Perhaps one day, in addition to a hug, loved ones will finally be able to give their family members who live in residence facilities the care they so desperately need.