Mary Daniel remembers well what happened on the evening of March 11, 2020. She wrapped up her visit with her husband at his Jacksonville long-term care center and went home to host her monthly book club meeting. There, the conversation soon turned to the looming coronavirus outbreak.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, had testified before Congress that day about the increasing caseload. The NBA had paused its season to help reduce the spread. And the World Health Organization declared COVID-19 a pandemic.
“Do you think this will affect your visitation?” Daniel, 58, remembers a friend asking.
“No, no, no,” she replied, “this is not going to affect my visitation with him at all.”
Then came March 12 — the day the Rosecastle at Deerwood assisted-living center called to tell Mary Daniel that her visits with her husband were over.
“We’ve closed the doors, and you can’t come in,” Daniel said she was told. Within days, the governor would halt visits at all long-term care facilities.
She seethed. How could she and Steve Daniel survive without sitting side-by-side each night, watching TV — the news at 6, Judge Judy at 7, Family Feud at 7:30 — after which she’d quietly sneak out just past 8?
How could she keep her promise from seven years earlier, when he was diagnosed with Alzheimer’s disease? That he would never be alone.
“I said there’s got to be a way,” Daniel said. “He needs to see me.”
It took her four months, but she eventually found a way in. And then she turned to getting other family members back into their loved ones’ care facilities.
She created a Facebook group where they could share information, got appointed to a state task force to restart visitation, is working on federal legislation to prevent it from happening again and takes paid speaking gigs to tell her story.
The coronavirus pandemic has knocked the legs out from under a lot of people, but it lifted Mary Daniel into a person on a mission.
“I don’t know that I’ve seen a singular person that had that much impact in a long time,” said U.S. Rep. John Rutherford, R-Jacksonville. “You’ve got to have that champion who will pick up the flag, and they’re going to carry that flag, and they’re going to fight for that cause and not let it go. And that was Mary.”
Daniel’s foray into caregiving began in 1983, when she transferred from the University of South Florida to the University of North Florida to take care of her ailing godmother and grandmother.
The women died within six weeks of each other — not in the hospital, but at home, Daniel said.
“It has brought great peace knowing that we did what we had to do to take care of them,” she said.
A few years later, Daniel cared for her mother until she died at home, as well.
Then in 1993, she met Steve at an outing with friends in Melbourne Beach. Both were divorced. They married three years later.
They went to blues concerts and tailgated at Florida-Georgia football games. Although they were in love, Steve was often unhappy, Daniel said.
“He was a glass-half-empty guy his whole life, and I’m the opposite,” she said.
Two decades later, the Alzheimer’s diagnosis was devastating, Daniel said, but it flipped his personality. He finally was happy and grateful, telling Daniel she was beautiful and how much he appreciated her. Their marriage grew stronger.
“He’s madly in love with me,” she oozed. And then the coronavirus put their new romance on pause.
At first, it didn’t seem that way. Be patient, Rosecastle’s executive director told her after visitation ended in March 2020.
“So I was sitting tight, thinking this is all temporary,” Daniel said. But Gov. Ron DeSantis’ initial visitation ban — set for 30 days — was extended indefinitely as the virus persisted.
Steve and Mary couldn’t even talk. Because of his disease, Steve, 67, couldn’t grasp Facetime video chats. And viewing each other through a window ended in tears when he couldn’t reach out to touch her.
“I had to fight to get back with him,” she said.
Daniel asked Rosecastle if she could volunteer or work at the facility. And it worked. The corporate office called to offer her a job as a dishwasher.
“I truly don’t believe they thought that I was going to take it,” Daniel said. “You know, it wasn’t the receptionist. It wasn’t the activities director. I mean, it was a dishwasher.”
She worked her first shift on July 3, 2020 — 114 days after the lockdown began. After five hours of washing the lunch and dinner dishes, Daniel put on a blue surgical gown and walked the familiar steps to Steve’s room.
Time stopped for a moment when Steve saw her and called out, “Mary.” He hadn’t forgotten her.
The two embraced, wiping away tears and spent the rest of the night watching their shows and sitting together.
“It was something that I had a greater sense of gratitude for because it had been a long time,” Daniel said.
But Mary Daniel didn’t stop there. She wanted all families to be reunited.
She told her story on a local TV news show, and soon the tale of the dishwashing wife spread across the state. She started a Facebook group called “Caregivers for Compromise” where thousands of family members traded tips.
And she called local officials. Sen. Aaron Bean, R-Fernandina Beach, connected her to the governor’s office. Jacksonville City Council member Al Ferraro connected her with Jacksonville Mayor Lenny Curry and Congressman Rutherford.
“My initial thought was, ‘Boy, this woman’s mad,’” Rutherford said. “And the more I listened to her, the more I understood why.”
Nursing home and assisted-living residents were dying in isolation, Daniel told him, and families were losing precious time with their ailing loved ones.
And then, Daniel aimed higher.
“Every moment, every break that I had, I thought, ‘How do I get to the governor?’” Daniel said. She emailed, called his staff and wrote him letters.
Weeks later, DeSantis formed a task force to plan how to get families back into care facilities safely.
On the seven-person task force, which included state leaders, the surgeon general and heads of long-term care groups, Daniel was the only layperson. They convened five times in August 2020. Daniel pushed for measures that would allow residents and visitors to hug or touch, despite the Centers for Disease Control and Prevention advice to continue social distancing.
And she stole the show.
“They’re not having unrealistic expectations,” DeSantis said at a press conference while choking back tears. “They would just like to be able to say goodbye or to hug somebody.”
Daniel told the panel that families would follow whatever safety guidelines were necessary.
“It’s just so difficult to understand why I, as a dishwasher, can touch my husband, but when I’m his wife, I can’t,’' Daniel said. “It doesn’t make any sense, not after six months.”
On Aug. 26, 2020, the group recommended breaking caregivers into types, allowing designated “essential caregivers” and “compassionate caregivers” to touch residents. They advocated for limited general visitation after visitors were screened for the virus.
Beginning Sept. 2, Daniel could touch her husband again as his wife, not as his dishwasher.
“Her ongoing advocacy has been a really powerful way to help people that feel like nobody’s paying attention to their challenges have an opportunity to feel heard,” said Jeff Johnson, state director for AARP Florida.
Debbie Ziemann said she used the information Daniel posted on Facebook throughout the year.
“Because of Mary Daniel, we got in long before others to visit and hug our loved ones,” Ziemann said. “I will always be grateful to her for the time I got with my Dad that others didn’t.”
The state rescinded its visitation limitations on March 22, and vaccines have removed much of the risk.
Daniel has cut back her work hours as a patient advocate for people negotiating their medical bills and is working on a federal Essential Caregivers Bill, which would ensure families are not kept out of their loved-ones’ facilities again during a public health emergency.
Anna Benitez is proud of her older sister’s acclaim and said Daniel has always been a person who makes things happen.
“People are acting like it’s a huge thing,” Benitez said, “but it’s just Mary being Mary.”
Daniel seems a bit more surprised.
“Who would have known a year ago the direction that my life would go in?” Daniel said. “What I hope to do is to be able to motivate other caregivers, to empower caregivers, to boldly advocate for their loved ones.
“Sometimes it’s really hard. But you learn to do what you have to do today, so you look back with no regrets. And that’s what takes you forward.”
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