On March 10, 2020, Mary Daniel went to visit her husband like she did every day after he’d been diagnosed with Alzheimer’s. What Daniel did not know was that the next day, she’d be told she could not come back—because of new lockdown measures.
“The days turned into weeks, and the weeks turned into months,” Daniel said.
Mary Daniel eventually got in as a dishwasher at her husband’s facility, and her story gained nationwide attention. Discovering thousands of Americans in similar situations, she founded the group Caregivers for Compromise—Because Isolation Kills, Too. After hearing about her, Florida Governor Ron DeSantis brought her onto his task force to reopen long-term care facilities.
Jan Jekielek: Mary Daniel, so great to have you on American Thought Leaders.
Mary Daniel: Thank you so much.
Mr. Jekielek: Mary, you have quite an incredible story to tell, a story related to difficult illness within the family that’s not Coronavirus, but intertwined with Coronavirus. Tell me your story.
Ms. Daniel: My husband Steve was diagnosed with Alzheimer’s eight years ago at the age of 59, and so it’s been a very difficult road. Two years ago, I decided to place him in a long term care facility. He was incredibly social, was an orange juice salesman and sold Florida’s natural orange juice for a living. He loved to travel and meet people. That’s why he was good at his job, because he just always knew how to build relationships and make friends.
So I made the most difficult decision that I’ve ever had to make, and that was to place him in a memory care center. The amazing thing is, he thrived. He loved it there. He loved being free to roam, instead of being locked up in the house. He made all kinds of friends, not only with the residents there, but with the family members there and the staff there. They gave him a seat at the front desk. He greeted everybody from family members, to providers, to the UPS man who came in every day. He hugged everybody and was doing very, very well.
I would go visit him in the evening after work. We would spend the evenings together. I would change him and get him ready for bed. We would just spend the evenings in bed watching TV. It was really a great way for us to end every single day together.
I went to see him on March 11. They called me on March 12 and said, “You can’t come back.” So I immediately called the executive director of the facility and said, “You know, this isn’t going to work for me. So what are we going to do? What can we do? Is there anything that we can do? Can I get a job? Can I volunteer? Can I bring a dog that we’re raising for Canines for Warriors and let that be a therapy dog, anything?”
I was desperate to get to him. They said, “We’re going to wait, let’s wait and see. It’s 15 days to slow the curve and we’re just getting started.” We all had no idea of what we were getting ready to face, and so I agreed. But the days turned into weeks and the weeks turned into months. I realized that I had to do what I could to get back to him.
I knew that the isolation was going to hurt him. With dementia patients, Alzhiemer’s patients specifically, the human contact, the hand holding, the back rubbing, me being with him was the most important part. I couldn’t talk to him on the phone. I couldn’t talk to him on FaceTime. His verbal skills are very limited. He talks but I can’t understand what he says.
So there was no conversation that we could have. He would kiss the iPad because he didn’t understand where I was and how that worked. We tried two window visits and he cried the entire time. He just truly didn’t understand why are you not in here and why are you not with me? He had no knowledge and no cognitive idea of the virus. He didn’t know what it was and didn’t understand it and so didn’t know what was going on.
I knew I had to get to him. When he was diagnosed, when the doctor actually said, “Alzheimer’s, you have Alzheimer’s,” That was our worst day. We went to see my sister and her husband, we cried. They cried with us, it was a bad day. But I told him on that day that I would be with him every step of the way. I would hold his hand every day, I would be with him, he would never take one step without me—I would be along every step of the way. I wasn’t doing that. I wasn’t fulfilling that promise that I made to him and that was incredibly difficult.
So I started reaching out to Governor DeSantis. I tagged him on Facebook and tagged him on Twitter and sent emails to him and anybody else I could think of. I put posts out there looking for anybody that knew him, “Does anybody know his chief of staff? Does anybody know anybody in his office that I could get to.” He needed to hear what I had to say. I just really, really felt that he needed to hear from somebody to say, “This is bad.” I said over and over again there has to be a better way. This isn’t working.
Mr. Jekielek: Do you mean like complete isolation, that’s not the answer?
Ms. Daniel: Correct. There has to be a way. I knew the staff was going in there. I could see his nurse practitioner went in there one day for a visit when I was at the window. So she’s in PPE, [Personal Protective Equipment] she’s all dressed, she’s doing all of these precautions. Why can’t I do that? I would do anything.
I gave them ideas, “Let’s do a clean room where you can sterilize it after everybody’s gone. Whatever you want me to do, I’ll do.” That’s what I meant by there just has to be a better way than isolating them, without any knowledge of when we were going to be able to get back. I became very vocal. I started copying all my emails to local reporters.
I had a couple who started picking up the story and started telling the story about the isolation and that was helpful. It got the attention of the corporate office out of North Carolina of my husband’s facility. They called completely out of the blue called and said, “We understand you want a job?”
The truth is it kind of surprised me. It had been a couple of months since I had suggested it again, because they ignored me and I hadn’t brought it up again. I said, “Actually, yes, I would love a job.” They said, “We have a part-time job available for you if you’d like it.”
And I said, “I’ll take it.” Then I asked, “What is it?” They said, “It’s a dishwasher.” I kind of think they thought I wasn’t going to take it. I think it was a way for them to kind of keep me quiet about their facility, to be honest with you. But I did. I said, “Dishwashing it is. I’ll be a dishwasher.”
So I had to go through quite a bit of training. Who knew that dishwashers had to do 20 hours worth of video work on hazardous waste disposal and food sanitizing and PPE and all of these things. I had to do a background check, a COVID test, TB test, fingerprints. It was quite the ordeal, but I did all of those requirements and started my first shift on July 3.
My fear was that I was not going to get back in time, that I was going to miss that window of opportunity where he knew me and knew our love and knew what our relationship was. So after 114 days and a five-hour shift of dishwashing, I went to his room. His back was to me when I walked in the door.
When he heard the door open, he turned around and the first thing he said was, “Mary”. So that was a huge relief. From there, the story went viral. The news, again, picked up on the dishwasher story, and it went crazy viral. That’s how it got the attention of Governor DeSantis.
I finally got a call from his chief of staff who said, “I understand you want to talk to the governor. We’re going to arrange that he’s coming to Jacksonville and we’d like to meet with you.” So I met with him and the first lady, who we were all very familiar with here in Jacksonville as a former anchor on local news for many years.
They both listened to everything that I said. They were incredibly thoughtful, very concerned. Of course, I came very prepared. After I started the dishwashing and got national attention, I started to realize that there were tens of thousands of people in Florida and hundreds of thousands of people across the United States who were in the same boat that I was.
Mr. Jekielek: You started getting emails or messages or phone calls from people all of a sudden.
Ms. Daniel: Yes, from all over the United States saying, “We are watching what you’re doing, and we feel the same way.” I knew we had the same struggle. We don’t know what to do, how do we get back to them. So I started the Facebook group “Caregivers for Compromise.” We have a national page that’s now 14,000 members strong.
We started a page for every single state. The pages have multiple purposes. The first one is to provide support for people that are experiencing this so that they know that they’re not alone, so that they can see what’s happening with other people and we have great compassion and understanding for each other.
It really serves a very important purpose there. It also serves as a place to advocate—especially our state groups. Each individual state has their own leadership. They have folks that have stepped up and are leading the way for that state and are doing really big things, passing new laws, getting new emergency orders like we did here in Florida and really making changes in states. It has to be done on the state level.
Unfortunately, it’s a bit chaotic out there and every state is doing something different. I have been fortunate to be in the state of Florida as the leader of this group and of this Facebook page. Governor DeSantis has absolutely without question led the way in how to do this right and get us back to our loved ones.
After our conversation, we walked out to a press conference and he announced the establishment of a Long Term Care Task Force for Reopening Facilities in Florida, and gave me a seat at that table with a lot of the big people, the nursing home industry people. The Surgeon General of the state of Florida was there. The gentleman in charge of elder affairs for the state of Florida, the head of ACHA [The Agency for Health Care Administration] was there. It really was pretty amazing to be sitting with these people and getting to have a voice, and it worked.
Mr. Jekielek: But at this point, you weren’t just a voice for yourself anymore.
Ms. Daniel: Correct. I was with Steve. I was back with him, but that wasn’t good enough. I knew that there were other people just like me, I knew that they were trying to get to them and they couldn’t. Even in our own facility, being able to see the other residents there alone was motivation for me to get back.
Why was I able to go in as a dishwasher, and not as a wife? It just didn’t make any sense to me, when we were willing to do anything that they told us to do. I had just worked a couple of days and literally, I was sitting there at my desk at two o’clock in the morning getting these Facebook pages set up and it was a bit overwhelming. I describe it as being a little weepy. I was talking to a friend who was helping me on the phone and she said to me, “Mary, God has placed you here for a reason.”
And I’ll never forget it. I have worked my whole life. I’m a patient advocate by trade. I’m actually a board-certified patient advocate. Believe it or not, there is something like that. I specialize in medical billing in my company. We help people with their medical bills. After 30 years of managing medical practices, I know the system and I know how it works. I know that you can push back and say, “Come on you guys, that doesn’t make any sense. We can do better than that.”
I was just the right person for the job at the time, whether that be the advocate to speak up for everybody and do Caregivers for Compromise or the dishwashing job. But it really was amazing once that first press conference happened and I was named to this task force. I really got to sit at the table with some of these big boys who were worried about liability. They didn’t want people back in.
Certainly my biggest foe, I should say, would be the Surgeon General. He didn’t want us to have touching. He didn’t want us to be able to hug, and that was a deal breaker for me. I told him that at one point saying, “I’m not going to negotiate on that. There’s no way that I can’t hug him when I go in there to wash dishes.”
At one point in one of the very first press conferences, Secretary Prudom was the elder affairs guy. He’s British and he starts telling the story of the electronic cats that you can give people and it provides them with a pet and the beauty of iPads and that they furnished iPads to all these different facilities. And then God loves him, he brings out this piece of paper that’s a strip of paper and it’s got two little paper hands on it. So it looks like a yardstick with two little paper hands on it. He starts telling the story that his niece from England sent this to him as a virtual hug.
He finishes talking and then it goes to the Alzheimer’s Association woman. She talks and it goes back to the governor. Then I say, “Governor, may I say something? Because I know that all of my Facebook group is watching this press conference. They just saw that stuff with the cat and the iPad. May I say something?” He said. “Absolutely.” I said. “I just want to be sure that everybody understands that I’m not here for a virtual hug. I’m here because we need a real hug.
While those things have their place in dementia care, I don’t want any misunderstanding of what my role is here—to permanently get all of us back with our loved ones. We want to hug them and touch them.” That was huge in terms of our movement. I set the tone of why I was there.
For everybody who was watching on Facebook Live, it was also a reinforcement that I’m going to speak for them. I’m going to tell the truth. I don’t want a cat. I don’t want a mechanical cat for him. I want me—for him. He needs me. The governor listened to that. After that first meeting we all met, and then we had a number of different meetings. The last one was the Surgeon General saying he didn’t like that idea, but agreeing, saying, “I will put an asterisk on it and say that we may need to revisit this, but let’s see what happens.”
So it went to the governor and he agreed with all of it. He held another press conference, and I went back to the same place and got to meet with him again. He was, again, incredibly honest and caring with what I had to say and wanted me to be a part of this group. On September 1 our new order went into effect. I was incredibly pleased with the rollout of the new order.
I thought that was it. I thought, “Okay, we’re in. Everything is great.” And within 24 hours, I called my own facility. I said, “Okay, you’re going to let everybody know, right? We’re opening the doors.” And I was told no, that they had just gotten off the phone with their association, the association that my facility is a member of, whose president was on the task force with me—who just the day before told me, “If you have any facilities that are our facilities that are not opening up, you just call me and let me know.”
Well, the president of my facility calls me and says, “Well, I just talked to her and she told us we didn’t have to follow these rules.” And I said, “Really. That’s not what she told me yesterday.” As a person on the task force, you would think she would be telling her organization that they needed to follow the rules.
So we decided to get her on the phone with the three of us and we had a conversation with her. She backpedaled big time with me on the phone. So we ran into conflicts where even somebody on the task force who agreed to this is not telling their membership that they need to comply. So it became incredibly difficult.
The head of the task force was Mary Mayhew, the secretary of AHCA, which is the Agency for Health Care Administration, who regulates all of these facilities in the state of Florida. I did have her backing and she was very much a supporter of touch. Honestly, and I don’t know this for a fact, but I believe that came as a directive from the governor. She knew that’s what the governor wanted. She was absolutely by my side on pushing for that throughout the entire process.
So I continue to be very vocal with the governor, his office, and with Shane Strom, his chief of staff who was very receptive to me. I had his cell phone number. I had his email address. Also, Jared Moskowitz, who is in charge of the emergency division here in the state of Florida. It has been an overwhelming job for him. I am really impressed with the work that he has done. He has been very receptive to me. I don’t know when I’ve ever reached out to him and he did not respond to me.
So it’s really been impressive, even as I’ve run into different things that I’ve not been overly happy with. We had a new order come out in November that said we could bring our loved ones home. ACHA had been very good at enforcing the first order in September. If we had a problem, we’d call them. They would call the facility, they would get involved.
They didn’t do that on the second order and it was really disappointing. So we had many people who wanted to bring their loved ones home for Thanksgiving or Christmas, and had told them that they would be able to come home for Thanksgiving or Christmas, because that’s what the order said. But every time, we had all the facilities telling us, “ACHA says we don’t have to do that. They say we can do whatever we want. We can make our own rules.”
And they were. We all felt lost. How do you go in and fight for something and show them this piece of paper, when they laugh at you and they say ACHA says we can do whatever we want. They’ve got places telling them, “You better quit complaining. If you [don’t} quit complaining we’ll kick them out.”
So you have people that are afraid. They’re afraid of retribution against their loved one by these facilities. I’ve said, “Listen, my husband’s not staying anywhere that I’m afraid for his care, ever. That’s not gonna happen.” Now that’s cutting my nose off to spite my face, because it’s going to be big problem having to find somewhere else. I got to move him. I got to move all the furniture. I got to get acclimated. It would be a huge ordeal to do.
But there is no way I’m leaving him somewhere where I think someone is going to be ugly to him or mean to him or not treat him like he’s supposed to be, because I’m trying so hard to get to him. That’s not the way this needs to work.
It happens every day in this industry, every day. A lot of it is power. They don’t want us telling them what to do and what not to do. They kind of like it the way it is. These folks have not been cared for in the way that they should. When we come in, they’ve got to get their ducks in a row.
When I saw Steve after 114 days, there were light bulbs out in his room. His remote control was gone from his TV. When I took his shoes off to put him in bed, his toenails had not been cut in 114 days. This is a man who was meticulous about his appearance. We didn’t dry his golf shirts. We hung them.
He has every shirt he’s ever owned in that closet in there because he took care of his things and his appearance with such great care. I pulled his shoes off, and I couldn’t believe it. Now is that neglect? No, he doesn’t know, he doesn’t realize it. I know, and I see it. What do you think that looks like after 300 days?
After a year when these people haven’t been in there, they need us in there to do these things that right now they’re understaffed to do. What I’ve tried to tell my people, my folks is that there’s such uncertainty here. All we can do is fight for them. That’s all we can do—express our views. Certainly as a group, we’ve been able to do that very, very effectively.
Because when this is over, and it’s going to be over for all of us, Steve is going to die. Everybody in these facilities, they’re going to die. When it’s over, did we do everything in our power to get back to them? The answer for us is, yes. And that’s just an incredible gift that we give ourselves. Never in my mind did I ever do this for me.
But wow, when this is over, every single one of us can look back and say we did everything in our power to get to them, to care for them, to boldly advocate for them. The truth is, our work is not done. We really believe that now that the governor has lifted all orders, they’re all gone—we’re really getting back to normal in most places.
Nursing homes, not so much. They’re federally regulated because they take federal dollars. We had a meeting with all of our groups last night, a zoom meeting where we are looking for federal legislation. Our fight is not over. We need consistency throughout the United States. We need an essential caregiver law that says if this happens again, that there is a designation that will be allowed to go in.
Because here’s the thing—as great as the plan was, and as much as we hoped that it would work—it didn’t work. Staff brought the virus into the facilities and the majority of people that died in the state of Florida died in these facilities. It didn’t work. Now, would it have been worse? I can’t answer that question.
What I want us to do, certainly as a state and then as a country, is to learn the lesson that there has to be a better way. And that way is, Florida showed an essential caregiver [designation.] That was our first order, an essential caregiver designation allowing one or two people to go in who follow the rules, who’ve been trained on PPE, who understand the value of handwashing, and who follow these guidelines.
And we’ve been safe. It’s worked from our perspective. The governor’s orders helped us get to them with zero uptick. We had no uptick in any residents getting the virus from family. It has continued to be simply from the staff.
Mr. Jekielek: Fascinating. This is actually a really important point to bring up. The older you get, you have co-morbidities and the risk actually becomes significant. When you’re younger, especially very young, [you have] very low risk of having any issues with the virus. Now at the same time, and presumably what you’re advocating for, there’s a risk in isolation. What are the considerations that you had to look at to figure out that this is the right thing to do.
Ms. Daniel: If you’ve been with an Alzheimer’s patient or a dementia patient, you know what touch does. I know how holding his hand calms him. I know when I go in to help him get a shower, how to approach him to get him to do the things that he needs to do. Those are things that his wife knows how to do, that the staff doesn’t know how to do. Those are things that I have the patience to do that an overworked and underpaid staff does not have the patience to do.
So we knew that the isolation was painful for them and was hurtful to them. What we’re seeing now is an actual diagnosis of “failure to thrive.” That is what you’re seeing on death certificates. Now, it’s the same diagnosis that they use for children who are abandoned or who have no family structure. My brother-in-law is a pediatrician and I ran his practice for 10 years. It’s a diagnosis that you see in pediatrics.
I follow news about the growing numbers of failure to thrive deaths in the elderly that are withering away if they don’t have someone to interact with them. Even more troublesome, obviously, are dementia patients who have to have the mind engaged. Without the mind engaged, the mind dies. It’s true for all of us, but especially for someone who has a dying brain. Anyway, you have to keep that stimulated and you have to keep him engaged, or else he just withers away.
And that’s exactly what we’re seeing happen. We have people that were in beds who have not been moved and literally can no longer move their limbs, because they’ve been laying in bed in a fetal position for so long. The number of bedsores—they’re just overworked. The staff is overworked. The turnover in this industry is unbelievable. One of the things that has happened is that it has really lifted the lid on what’s happening in these facilities—and what do we need to do to change it?
[There is a] fairly uneducated workforce, both underpaid and overworked. Most places are understaffed, especially right now. Everywhere is understaffed. So we need to look at this industry. We need to look at what’s happening behind these closed doors. Families need to be in there. Again, in most states, we’re just starting to get visitation back.
Florida has been so far ahead of everybody, with the governor leading the way in showing us how it can be done safely. It has been remarkable. There is absolutely no question. I am on all 50 Facebook pages for our group. There’s no question that Florida is way above, months above, six months above any other state in terms of what we’ve been allowed to do. And it’s worked and it’s been safe.
Mr. Jekielek: Fascinating. You were saying the right person at the right time.
Ms. Daniel: Right. It’s amazing how my actions, which could not be possible without the governor, have literally enabled hundreds of thousands of people to get in and be with their loved ones. Literally. The people that have watched me, I tell them all the time, “I’m not special. I’m you. I’m just like you and you’re just like me. I’m no different than you and you’re no different than me. This is boldly advocating for our loved ones, so that we can look back with no regrets. That’s what this is. And you can do it too.”
And they have. All these people all over the United States have done that. In this conference call, our leader in New York had a press conference today with her representative who is introducing—I think it’s HR 2114—that’s an essential caregiver bill for the federal government to look at. Our New York person did that. She did that because we are so reinforcing and so excited for each other and so motivating for each other.
“This is what I did in my state, what are you going to do in your state?” And they’re doing it. So it really has been unbelievable to see how other states have jockeyed off us and seen the work that I’ve done—to be able to have the confidence to go and do the work themselves.
Texas is exactly the same way. North Carolina, Alabama, Tennessee, Connecticut, Rhode Island, all over the United States, with a big group in California. These people are working really, really hard. I was able to give them a place to do that and to stay focused on it and get direction from the rest of us. That came from showing the world how to do it, and other people are following suit.
Mr. Jekielek: I noticed that you had a traveling memorial of sorts. Can you tell me a little bit about this?
Ms. Daniel: We did. Florida had one, as well as many other states. It started in Texas last year. As we were getting close to the one year anniversary, we as a national organization really put together quite a few activities, from letter-writing campaigns, to email campaigns, to social media campaigns, to get the attention of a lot of our elected officials and remind them that we are still out here and many of our loved ones are still isolated.
So we took a part of our page name that says, ‘”Isolation Kills Two,” and we put them on these traveling signs. In Florida, for example, we had 300 signs. I hand-wrote the names of 300 people on those signs that were submitted through our Facebook group. These were people that had either passed away in isolation, or who were still in facilities and not able at that point to leave the facility.
We were able to go in. For the state of Florida, they were here in Jacksonville. I actually contacted Shane Strum at the governor’s office and asked him if he would help me find a place to put them in Tallahassee. He connected me with the people to put them on the lawn of the Florida Capitol, which was really cool.
So we went over there and they were out there for three days in front of the Capitol Building so everybody can see. They were really just a reminder, a grim reminder of what our message has been. We know that COVID kills. We certainly know that and we know our family members are part of that vulnerable population. But we want the world to know that isolation kills too.
Mr. Jekielek: And frankly, just to offer some perspective, because the focus on the COVID deaths has been very pronounced for a very long time. So it’s very interesting.
Ms. Daniel: It’s real. When we say isolation kills two, we mean it. It’s a lonely, lonely death for people who have died alone. There are facilities that are still not letting people come in when they know a patient is dying. There’s no excuse for that. There’s no way that makes any sense when you know a patient is literally within their last hours, and you will not allow family members to come in and be with them.
There’s something really wrong with the system. We call that complicated grief. Because it’s very difficult for someone to come to terms with that as a loved one. If I had to stand outside a window and watch my husband die in a bed alone where I’m not able to get to him, it’s hard to work through that.
Mr. Jekielek: So isolation doesn’t only affect folks with Alzheimer’s. There’s a whole bunch of different scenarios where isolation plays a pretty significant role in people’s general health and wellness.
Ms. Daniel: My father-in-law, just passed away on February 5. He was 89 years old. He was a man who went to church every Wednesday and every Sunday for as long as I’ve known him, and I’ve known him since I was 12 years old. He was also an older man who didn’t have internet access. He never had a computer and didn’t want a computer.
So he was truly isolated in his home. He lost church, he lost his church family. He couldn’t even watch it on Facebook Live or anything like that, because he didn’t have it and refused to get the technology so he could take part in it. There’s no question in my mind that played a role in his decline—being by himself and being a man who didn’t want to take help from other people.
But all of a sudden, he was completely isolated from the rest of the world. There are millions of people just like that all across the United States, especially those who don’t have a family. I was able to be there with him, although he was very skeptical at first—just the fear of not knowing and wanting to be very careful.
But for people who are truly isolated and may not be around a lot of family members, there are so many different scenarios, whether it is the elderly, or even the kids at school who are not being able to socialize. We are human beings that crave touch and interaction with each other. This has been incredibly difficult and who knows what the consequences are going to be.
I go back to the governor and see how he and Jared Moscowitz have worked together from both the Republican and the Democratic sides. As a citizen, I’m concerned that we can’t get to the truth, that we don’t know what the truth is.
So let’s look at what’s happened to our different populations, to my husband and to the populations inside these facilities, to our school children, to the elderly that have been isolated at home. Are we going to be able to truly look at these and see and learn, so that we don’t make the mistakes that we made before?
I’m afraid that in the political climate that we have we’re not going to be able to do that, which is incredibly sad. For somebody like me, you have this doom and gloom feeling of we’re not going to be able to work together and to come to some agreement on the pros and cons of this and what’s right and what’s wrong, and what should we do next time, and what should we not do next time. Because if all they want to do is argue with each other, then we are in trouble as a nation.
I look to Governor DeSantis, and I look to Jared Moskowitz as leaders to show how two different people who come from two different backgrounds politically can come together and be very successful and support each other in what they’re doing, knowing that it absolutely is the best thing to do. I would love to see their relationship be a model for other people.
We need the truth. We need to know and I’m worried that we’re not going to be able to get there. Certainly, as someone who is 58 years old, I worry about my stepchildren and my nieces and nephews and my family. What is life going to be like for them when the truth doesn’t matter. And we need hope. I would certainly like to have hope for the future.
Mr. Jekielek: I don’t think you’re going to be backing down anytime soon, though.
Ms. Daniel: No. We got a lot of work to do.
Mr. Jekielek: Mary Daniel, it’s such a pleasure to have you on.
Ms. Daniel: Thank you so much.
These interviews have been edited for clarity and brevity.