Caregiver Advocacy: Whatever It Takes
Nothing can replace seeing, touching, and spending time with a loved one in person. COVID-19 impacted that more than anything in recent history — especially for those with loved ones living in a professional care setting. Facilities nationwide were forced to close their doors to outside visitors to protect their residents’ health and safety, but that prolonged separation has been extraordinarily hard for families.
Mary Daniel of Jacksonville, Florida, is one of the many who were affected. Her husband, Steve, lives with young-onset Alzheimer’s in an assisted living facility, RoseCastle at Deerwood. Both looked forward to their daily visits, but that changed once the pandemic began—they went months without being together in person. Visits through the window sadly made things harder. Steve would get upset and not understand why they had to be separated. Desperate to find a way to be with Steve and make him feel comfortable and loved, Mary was willing to try anything.
Partnering with RoseCastle, she found a solution—working there part-time as a dishwasher. As an employee, she could be allowed inside and see Steve. “When they offered this to me, I let them know I’d be the best dishwasher they ever had,” Mary said. “I wanted and needed to be there more than anything, because it meant I could be with Steve.”
Following her first shift on the job, 114 days after their last visit, Mary and Steve were reunited. The creative solution became national news. Mary’s efforts didn’t stop there. Florida Governor Ron DeSantis appointed her to the state’s Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities, where she’s used her experiences to work towards creative solutions to help prevent prolonged caregiver and family separation in the future.
Working with members of the Florida State Legislature, she advocated for new legislation that requires care facilities and hospitals to allow patient visitation with touching from family members during public health emergencies such as the COVID-19 pandemic, as long as visitors adhere to required health protocols. The law passed with bipartisan support. With the help of a 14,000 member Facebook group she runs— “Caregivers for Compromise—because isolation kills too!”—similar legislative efforts have reached all 50 states.
“We understand the well-intentioned reasoning behind these restrictions—to protect our loved ones. But prolonged isolation and loneliness harms them too, as well as us,” Mary said. “To me, it’s about finding the balance—if it’s ok for me to touch Steve as a dishwasher, I should be allowed to as his wife if I follow the same protocols. That’s what we’re working towards.”
This article originally appeared in Alzheimer’s TODAY, Volume 17, Number 1, published by the Alzheimer’s Foundation of America. View the entire issue by clicking here.