Jacksonville — UPDATED April 7, 2022
WOKV updates the following story on Mary Daniel, back in the spotlight as Governor Ron DeSantis signs into law the “No Patient Left Alone Act.”
Story updates precede our original Women’s History Month spotlight/Podcast. Please click on the enclosed link to hear the podcast interview with Mary Daniel.
Yesterday, Governor Ron DeSantis signed into law the “No Patient Left Alone Act” that requires hospitals, nursing facilities, hospices, assisted living facilities and care centers for the developmentally disabled allow in-person visits with rules for infection control, visitor screenings and education, and dealing with personal protective equipment. The bill also allows visitors to see loved ones during emergencies.
Spearheaded Jacksonville’s Mary Daniel, who accepted a job as a dishwasher in order to be able to visit her husband Steve, an Alzheimer’s patient in a long term care-facility during COVID, the bill was signed on her 26th wedding anniversary. The bittersweet accomplishment comes as no surprise to Daniel who has been working tirelessly on both the state and federal level to change laws that prohibit family and caregivers to visit their loved ones during pandemics such as COVID-19.
Daniel describes the accomplishment as the finality of teamwork between a husband and wife that will positively affect hundreds of thousands of people.
“This bill is not just about long-term care,” she said. “It’s about making sure that everybody gets the right to visit a loved one. It’s a pretty cool accomplishment.”
With a teary voice, Daniel admitted that Steve would be pleased that she, a long-time patient advocate, found work that needed attention to promise and guarantee that loved ones are never prohibited from visiting patients in long term care facilities and hospital settings. And despite changing state legislation, Daniel is far from completion. Caregivers for Compromise, the Facebook organization born and bred from Daniel, is working to change legislation in every state in order to step up and change Federal laws.
“We’re still working on federal legislature,” she continued. “We are calling on congressmen and senators to get more involved. I’ve reached out to Senator Rubio because we need a senate companion bill. We’re working towards a Florida constitutional amendment to make the law permanent. As it stands now, a new governor can change the legislation. Only a constitutional amendment can stop that from happening.”
When asked if she ever imagined that working as a dishwasher would lead to changing laws, she repeated, “Never. Never. Ever. Ever.”
“Who would have ever dreamed it,” she concluded. “But now it feels like it’s my life’s work.”
Women’s History Month, celebrated annually in March, recognizes the historical contributions of women.
Formerly designated as a week, instituted by President Jimmy Carter, the National Women’s History Project successfully petitioned Congress to designate the entire month as Women’s History Month.
As we acknowledge the likes of Abigail Adams, Susan B. Anthony, Sojourner Truth, Rosa Parks, Maya Angelou, Amelia Earhart, Marie Curie, Jane Goodall, Sally Ride, and Serena Williams to name but a few, the month’s theme changes yearly.
The 2022 theme, “Women Providing Healing and Promoting Hope” spotlights caregivers and frontline workers who worked tirelessly during the pandemic; of course, running parallel to every woman who has provided hope and healing throughout history.
This year, Rich Jones, WOKV’s News Director chose Mary Daniel, a board certified patient advocate who quite literally got her hands wet for the sheer sake of being able to hug her husband.
Steve Daniel, an Alzheimer resident in a long-term care facility, was among the many sequestered during the COVID pandemic. Prohibited from all visitation, Mary accepted a job as a dishwasher in the facility in order to see him. Not only was she determined to adhere to her promise to forever care for him during his illness, she refused to, as she says, “Save him to death.”
The wife and certified patient advocate explained to WOKV that while it seemed reasonable to keep this vulnerable population safe, the reality of the protocol was devastating. Instead of safe and comfortable, long-term care residents felt punished, abandoned unloved and forgotten. As contact with the outside world happened through windows and virtual devices, adults with intellectual and cognitive disorders became traumatized. Masks, Plexiglass barriers, closed windows and barricades caused confusion, anger and fear.
Mary would soon see that the isolation protocols were resulting in life-threatening and life-ending degrees of weight-loss, despondency and rapid cognitive decline. “Residents lost the will to live,” she says. “With no social interaction with friends in the facility, no entertainment from outsiders, no visitors, no exercise, not outings and nothing to look forward to, these residents had no reason to get out of bed. When coaxed, their behavior was either lethargic or erratic. They gave up and longed for death for it was better than the loneliness and despair of daily life.”
Mary refused to leave Steve alone. When diagnosed with Alzheimer’s at age 59, he was cared for at home for years until Mary, who was working full-time, made the “gut-wrenching decision” to place him in a full-time care facility to surround him with a social environment that extended beyond a day care-giver and the television.
In July of 2019, Steve was placed in Jacksonville’s Rose Castle at Deerwood. He thrived. Nicknamed the Mayor, Steve sat at the front desk, meeting and greeting the guests of Rose Castle. Everyone from the UPS Delivery person to resident family members got a hug, Mary says, whether they wanted one or not.
Mary visited Steve daily. She readied him for bed before snuggling to watch the news, Judge Judy and Family Feud. A daily routine she describes as a nice way to end the day.
Until March 11.
Click on the link below to listen to the complete podcast with Mary Daniel.
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