Caregivers for Compromise: Florida families looking for middle ground between safety and seclusion

TALLAHASSEE, Fla. (WCTV) - In early July, the story of a Jacksonville woman, Mary Daniel, went viral.

Her husband, Steve, has early on-set Alzheimer’s and lives in a memory care facility. For months, the couple could only see each other through a window or by technology.

In mid-March, when the COVD-19 pandemic first hit the United States, Florida Governor Ron DeSantis issued an executive order restricting visitation to the state’s long-term care facilities.

After four months, Mary started noticing a decline in Steve’s physical and mental health and knew she needed to do something.

So, she took a second job as a dishwasher at his memory care facility, just so she could hug her husband.

Recently, the governor extended those restrictions for another 60 days, meaning families will have gone almost six months without physically touching their loved ones.

With more than 3,700 licensed long-term care facilities in Florida, this story impacts thousands of facility residents, those who work in them, and their loved ones.

On July 9, 2020, Mary started a Facebook page called Caregivers For Compromise.

As of July 23, it has more than 6,100 followers, including several WCTV viewers.

Their mission isn’t to bash the governor. They acknowledge the state’s help with technological assistance during the initial months of COVID.

It’s also not to downplay the critical role and excellent care many families said these facilities are giving their loved ones.

The families WCTV talked with say these health care workers are going above and beyond to not only be a caregiver but family during this very stressful time.

However, it is to tell Governor DeSantis the measures that worked initially are not working now.

Families tell WCTV they fear if changes don’t happen soon, their loved ones will become collateral damage in the fight against COVID-19.

Tallahassee couple Paul and Susan Rogers tell WCTV that, before the lock-down, they would visit Susan’s 99-year-old mother, Mae, every week.

They’d take her out to eat and even get her nails done.

But now, every Tuesday and Thursday, they visit outside the window at her memory care facility in Tallahassee.

Susan said it’s gotten to the point where her mother just cries constantly and is inconsolable during their visits.

“Now that she’s doing all this crying, they want to give her something for anxiety. My mom has never needed that before. She’s just not handling it well. It’s going on too long,” Susan said.

The Rogers’ say Mae lived for these weekly visits and her eyes would light up just seeing them come through her door.

But now, these visits are full of sadness and frustration. They use cell phones to try and help Mae, who’s hard of hearing, understand the conversation.

They’ve even tried using FaceTime, but said it’s not a viable option because of Mae’s dementia.

“She just stares at it. Like it’s a video or a movie of me,” Susan said.

The Rogers’ are not alone.

In Blountstown, sisters Jennifer and Mary Ellen visit their mother every day at her health and rehab center.

“She was very happy. She had a social life and she was really thriving here and then COVID-19 came and it’s all changed since then,” Jennifer said

Families tell WCTV they’re concerned; they understand the initial ban on visits, but now believe if there’s not a change, their loved one won’t die of COVID-19, but from isolation and loneliness.

“She’s made comments she wishes they had a pill that she could take and either wake up when this is over or simply not wake up and that caused us to say this can’t keep going on,” Mary Ellen said.

The families said they’ve taken their worries to the governor, frustrated.

Emails go unanswered.

Until July 18, when the governor directly acknowledged Mary Daniel, the woman in Jacksonville, taking that second job to see her husband and the issue of isolation.

“When we do a policy like the visitation limit, ban on visitation, trust me, I know that that’s not cost-free. And if I could lift that tomorrow without fear of negative consequences, we would do that,” Governor DeSantis said.

While COVID-19 cases are up, Florida regulators stand firm, visitor restrictions keep positives low.

“No one believes that this is a long-term situation that we want to keep in place, but it is absolutely in the best interest of keeping individuals from getting COVID and dying from COVID,” Mary Mayhew, Secretary of Florida’s AHCA, said.

But families tell WCTV they feel if employees can get COVID-19 tests every two weeks and come and go from the facility, why can’t they?

“We’re willing to take the tests. We’re willing to mask up. We’re willing to do what-ever, but we’re not willing to stand by and let nothing be done,” Jennifer said.

Back in May, the Florida Health Care Association created a plan for long-term care facilities as the pandemic continues. One of those items did address ways to safely do visitation.

The organization’s executive director, Emmett Reed, tells WCTV before the recent rise in COVID-19 cases in Florida, they felt they were getting close to allowing visitation.

“I do believe that if we see the numbers start to go down again that we can figure out a timeline, but right now, there’s no timeline,” Reed said.

The Florida Alzheimer’s Association also tells WCTV that it’s working with other states to find out what things they’re doing to create a safe visitation experience.

“My hope and desire is that we can get to some kind of ‘best second choice’ until we can ultimately get you in the room and be there with your loved one,” Michelle Branham, Vice President of Public Policy, said.

Until that day, the families come back to the windows.

They put on brave faces like their parents once did for them; masking their pain and worry that time is running out.

So, what are other states doing in terms of visitation?

The AARP has put together an interactive map, showing what each state is currently doing.

Back in May, WCTV did a story in Valdosta, where a long-term care facility was allowing a five minute, socially distant, outdoor visit.

The Florida Senior Living Association tells WCTV, right now, this might be the most viable option.

WCTV also reached out to Governor DeSantis’ office as well as the Florida Department of Elder Affairs for this story.

We asked what it would take for the visitation restriction to be lifted and what visitation in Florida would look like.

At this time, we haven’t received a response from either.

If you’d like to learn more about this issue and give your opinion, the Florida Department of Elder Affairs, along with the Florida Alzheimer’s Association is hosting a “Project Vital-Social Isolation virtual forum.”

It’ll take place on August 20.

To sign up, click here.

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