JACKSONVILLE, Fla. – A Jacksonville woman is pushing to secure rights for every caregiver to see their loved one — pandemic or not.
Mary Daniel is taking her fight to the Florida Legislature, which is moving into the fourth week of the legislative session. At the same time, Daniel is also fighting for change on the federal level.
Daniel and her husband, Steve, have an incredible love story, partly because of tragedy. Her husband was diagnosed with Alzheimer’s disease at just 59 years old.
Now 68, he’s in a long-term care facility that shut out Daniel and others when the pandemic crashed down on the world in 2020.
“I would go visit him every evening and get him ready for bed, and he would go to sleep, and it would be a great way for us to both end our day, and we did that on March 11.” Daniel said. “And on March 12, they told us that I can’t come back.”
That’s what launched a memorable fight by Daniel. She got a job as a dishwasher at the facility so she could see her husband, then got the governor’s attention, then kept charging for change.
In Florida’s House and Senate, “essential caregiver” bills are moving, led on the House side by Rep. Clay Yarborough, R-Jacksonville.
Daniel’s campaign includes a book for every lawmaker.
“And part of that is telling our story, wanting to tell people what this journey has looked like and what it felt like for so many people who not only were separated and finally got back in, but for so many people who lost someone and had to literally watch them die through a window,” Daniel said.
Daniel calls that “complicated grief” and produced books that offer the real life, or real death stories of people in long-term care.
“And we call it “saving them to death,” because we certainly understand why the lockdowns were done with the best of intentions,” Daniel said. “We understand that COVID kills, but we also understand that isolation kills too. And so we were trying to save them and many of them ended up dying from loneliness.
Daniel and others gave a book to every lawmaker in Tallahassee last week, 160 of them.
Daniel says the federal legislation is further along, but will only affect facilities covered by Medicare and Medicaid. The state bills would affect private facilities, like her husband’s.