She took a job as a nursing home dishwasher just so she could see her husband
Florida's Mary Daniel says her husband has Alzheimer’s and could not understand why she couldn't visit
When Mary Daniel's husband was first diagnosed with early onset Alzheimer's at the age of 59, she promised that she would never leave his side. Then the coronavirus pandemic hit.
For seven years, Mary visited Steve every night at the Rosecastle at Deerwood nursing home in Jacksonville, Fla. They would eat dinner together, then snuggle up in bed and watch TV until he drifted off to sleep.
But that soothing routine came to a screeching halt on March 11 when the facility went into lockdown to stop the spread of COVID-19.
"I promised Steve … that I would be by his side for the rest of his life, that I would walk this walk with him, and I would hold his hand every step of the way. And I didn't do that for 114 days," Mary, 66, told As It Happens guest host Susan Bonner.
"I was terrified that when I did get back to him, it would be too late for him to know me and to know my love."
After nearly four devastating months, she is finally able to visit Steve again after the facility offered her a job as a part-time dishwasher.
When Mary first learned she would no longer be able to visit Steve, she panicked.
"He does not have the ability to understand the virus or why I'm not there, so I was extremely worried about him being confused, being lonely," she said. "And I was really, really concerned that it would lead to a decline in his physical and mental state."
At first, she says she tried to be patient. In those early days of the pandemic, she and the Rosecastle staff held onto the hope that it would all be over in a couple of weeks.
"As time went on, as days turned to weeks and weeks turned to months, I started to get a little bit more vocal about coming up with some alternatives because this was not working for Steve or for the other residents in his facility," she said.
She tried every alternative to in-person visits. First, she set up video calls.
"But he is not vocal. He talks quite a bit, but is not able to articulate anything, so you can't understand what he's saying. So having a phone conversation or a video call was just confusing to him," she said.
"I would ask him questions and try to have some sort of conversation, but that just wasn't possible. You know, things like I would blow him kisses and he didn't understand what was going on. He would lean down and kiss the tablet because it just didn't make any sense to him."
Then she tried window visits — which has been a balm for other families with loved ones in long-term care facilities. But, again, Steve's dementia added a layer of confusion that made the process unbearable.
"We did two window visits, but he cried the entire time. So I made up my mind on Father's Day — that was the last one that we did — that I was just not going to do that anymore. It was just too painful for him and too painful for me to watch him cry," she said.
A heartfelt reunion
During the 114-day stretch, Mary emailed the state's governor every day, along with anyone else who would listen. She joined a support group on Facebook, "Caregivers for Compromise Because Isolation Kills Too," and has become an advocate.
She begged the facility to find a workaround. She offered to volunteer there as a caregiver. She proposed bringing in therapy dogs for the residents.
Then, finally, Rosecastle called and offered her a job.
"I couldn't believe it when they called completely out of the blue," Mary said. "And I said, 'I'll take it. Dishwashing it is.'"
Kelley Withrow, the facility's executive director, stressed that the visitation ban is necessary but acknowledged it's "been hard on families and residents alike, so we felt creative solutions were necessary, especially in the case of Mary and Steve."
Mary takes precautions when she goes to her second job at Rosecastle. She was in a parking lot waiting for the results of a rapid COVID-19 test while she spoke to As It Happens on Thursday — and it wasn't her first.
She also participated in 20 hours of video training on hazardous waste disposal and food safety in preparation for the job.
But it was all worth it when she visited Steve after her first shift. When she opened his room door, she says she was seized with fear that she was too late, that he wouldn't remember her.
"When he turned around and saw me, the first thing he said was 'Mary,'" she said. "And I knew that I had gotten back to him in time."
Dishes, dinner, TV
The couple have since settled back into their old routine. Two days a week, Mary leaves her day job of running a medical billing company and heads over to Rosecastle to wash dishes for a couple hours. Then she goes to Steve's room and they watch TV together in bed until he falls asleep.
"I'm only there two days a week, but it's enough to let him know that I'm there and that I will be back," she said.
"It's just absolutely precious for me to be able to touch him, to comfort him, to lay down beside him."
It's a comfort that she wants for other families and caregivers too — especially those whose loved ones have dementia. She proposed alternatives such as increased testing, or outdoor visitation.
"I absolutely understand why this was done, and it is being done with the best of intentions. The problem is, we are isolating these people to save them. But the isolation is going to kill them, too. They are dying by themselves. And I think that's incredibly cruel," she said.
On Tuesday, Gov. Ron DeSantis said he was considering loosening the state's ban on visitations at nursing homes for loved ones who can take a rapid-response test for the virus before entering the facility. Since then, Mary says she has been in touch with his staff to talk about possible solutions to bring families together.
"Dementia patients need love and they need touch. They need the presence of other people or their brain just dies much quicker than it normally would," Mary said.
"I'm not washing dishes for the money. I'm washing dishes for that."
Written by Sheena Goodyear with files from The Associated Press. Interview with Mary Daniel produced by Morgan Passi.