MARY S. DANIEL: Caring Loud and Proud (and Creatively) During Covid and Beyond

In Episode 67, Don Priess and I have a candid - and inspiring - conversation with our first guest of the year, Mary S. Daniel, a Board-Certified Patient Advocate  whose mantra is "boldly advocate for your loved ones". 

Leading by example, Mary showed us just what that looks like when she took a job as a dishwasher at the facility where her husband, Steve (diagnosed with Alzheimer’s disease in 2013 ), lived after being separated for 114 days during the lockdown due to COVID-19. 

The conversation delves into some of the very real challenges caregivers face navigating our ageist, ableist, and broken healthcare system that became glaringly apparent during the Covid era.  A fierce advocate, Mary shares the  incredible steps she took to make sure she kept a watchful eye and consistent connection with her husband, Steve, despite the seemingly impossible roadblocks.

Mary founded the Facebook group "Caregivers for Compromise – because isolation kills too!" which has over 14,000 members and chapters in every state. Her grassroots effort got the attention of Florida Governor Ron DeSantis who named Mary to the Florida Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities. The recommendations of the Task Force were accepted by the Governor on September 1, 2020 and Essential Caregivers were allowed back in facilities to see their loved ones.

On December 21, 2022, Mary announced that her beloved husband Steve, passed away peacefully that morning. One of her next posts simply said, "Now What?" Mary answers that question and much more in this "must listen"conversation.

 #healthcare #covid #Alzheimers #grieving #caregiving #carepartner #endalz #dementia #dementiacare #caregiver 

Transcript

Don Priess: 0:00

When the world has gotcha down, and Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie Singer, Carter, and me, Don Priess.

Susie Singer Carter: 0:36

Hello, everybody. It's Susie singer Carter. Happy 2023

Don Priess: 0:42

Yes, and I'm Don . And this is the first show of 2023 Love Conquers Alz. And Hi, Susan.

Susie Singer Carter: 0:49

Donald. Happy New Year.

Don Priess: 0:51

Yes. Happy New Year. Let's hope it's a happy new year. Please, please. Yes, I heard of the shenanigans.

Susie Singer Carter: 1:01

Like my girlfriend says. Like that.

Don Priess: 1:06

Classy.

Susie Singer Carter: 1:07

It's so classy, but I will step over cracks. And I will knock a lot of wood. Because last year was harrowing.

Don Priess: 1:17

Yeah, it was something it was kind of hopefully that was like the culmination of the three years of whatever. We've been in the quagmire we've been in. And yeah, it really just came to a head last year and hope that we're now heading, you know, to the to the other side of the hill

Susie Singer Carter: 1:36

to some some semblance of normalcy, right? Yes.

Don Priess: 1:40

Wouldn't it be lovely? Wouldn't it be awesome?

Susie Singer Carter: 1:42

I don't remember what it is, though.

Don Priess: 1:45

wouldn't recognize if it hit me in the face. Right. That's how we

Susie Singer Carter: 1:50

were like battered. People were like, oh my god, I could sunny today. Our bar is so low. Yeah. We got honestly, we really hard, but maybe it's good because maybe it recalibrated us to sort of appreciate the smaller things. And you know, I think

Don Priess: 2:16

that's exactly what I do appreciate. Like, if you if you do anything of norm that was that used to be considered normal now, I do appreciate it a lot more.

Susie Singer Carter: 2:27

Yeah, but like we were in a restaurant last night for my girlfriend's birthday. And it was so nice to be in a restaurant. And, and it was really crowded and noisy, like normal. You'd be like, God, it's so noisy. Why this is the worst. I love it noise. It's people. It's lights. Yeah, it's life. It's so nice. It's it's not it's not takeout

Don Priess: 2:54

curbside pickup,

Susie Singer Carter: 2:56

curbside pickup. Anyway, that's enough of that crap. Yeah. All right. Absolutely. Well, anything else Good. What's happening with you? How's everything

Don Priess: 3:06

working on a documentary that we hope to have done fairly soon. So we can roll right into the next documentary, which is ours,

Susie Singer Carter: 3:13

which is ours. No Country for Old people. I feel very good about it. And I'm appreciate everybody that's been supporting us the national consumer voice for quality, long term care and candor here in California and AMWA. The AJ look at me with all my acronyms. The letter like, unlike professional, but I'm not as professional as our guest. Why don't you tell everyone who we have. I don't know if

Don Priess: 3:42

anyone is as professional as our guest who happens to be Mary s. Daniel. Mary is a board certified Patient Advocate with more than 30 years of medical practice management experience during COVID. In order to see your husband Steve and Alzheimer's patient, she took a job as a dishwasher in the Memory Care Center where he lived. Her story of perseverance and determination was featured in hundreds of news outlets around the globe. Mary founded the Facebook group caregivers for compromise, because isolation kills two, which has over 14,000 members and chapters in every state, fighting for the rights of her husband and 1000s of others who were isolated. Her grassroots efforts got the governor's attention and Mary was named to the Florida Task Force on the safe and limited reopening of long term care facilities. The recommendations of the task force were accepted. And the central caregivers were allowed back in facilities to see their loved ones. She's a remarkable woman with a remarkable story. And we can't wait to hear more. So let's say hello to Mary Daniel. Hello, Mary.

Mary Daniel: 4:43

Hello. I am thrilled to be here with you guys.

Susie Singer Carter: 4:47

Hi, Mary. Thank you for coming. Well, first before we get into that, I just want to say that three weeks ago you lost Steve and I My heart is with you. And it's I know the road you've been with a lot of us, we all walk, you know, we've all got that road, it's dip, it's a different street, but it's the same road. So we get it. And I know, I know, all the mixed feelings you're feeling now. And I know it's a huge transition for you.

Mary Daniel: 5:18

It is I've been I mean, he was diagnosed nine and a half years ago. So I have been his caregiver. For that amount of time, I mean, a daily responsibility for that amount of time and his parents before him. I mean, his father just died two years ago. And so I was their sole caregiver, literally for decades. We were married 26 years. And so it's a real, I knew that I knew what the end look like. I mean, in the sense of I knew at one point that this was going to end, I've known that right for a very long time. But the realization that we're actually here, and that it's over is it's a real interesting place to be in trying to figure out sort of my new normal, I guess,

Susie Singer Carter: 6:03

totally, totally well, before you got to this new normal, he just just, you know, inspire us with how you came up with this idea to get to go in and get a job. And how that worked out. And what what obstacles did you hit what what, or didn't just give us a little bit because I think it's just extraordinary.

Mary Daniel: 6:25

Back in March of 2020, when we got word that we were locked out that we were not going to be able to go back in, I immediately call the corporate office of our facility. And I said, you know, very naively, this isn't going to work for me, I've got to, I've got to get seen, I promised him that I would be with him every single day. And so I have to be in there. And I have to see him. And they said like all the rest of us, you know, we've got 10 days to slow the curve or whatever it was back then. Let's be patient, let's see what happens. And that's when I asked for the job. You know, let me go in and work. Let me do something in there. And they said, Let's just see what happens. This is going to be over in a couple of weeks. And, and the you know, the days turn into weeks, and the weeks turn into months. And before I knew it, I mean, you know we'd had a couple of months go by and we tried to Window visits, he cried the entire time. It was just awful. He couldn't understand what was happening. He it till the very end, he never knew what COVID was, he never understood that I was ever a dishwasher. He had no idea about any of that. So I knew that I had to fight to get to him. And so I started emailing and calling everybody that I could possibly think and think of from every reporter in I'm in Jacksonville, Florida from local reporters here, I would copy the the governor's office and the head of the Health Care Administration here. I mean, I just started shooting out these emails, and making phone calls saying my mantra at that point was there has to be a better way. Mate, let's do a clean room where we can go in and then after I leave with Steve, you scrub it down and you bring in the next family member. There's I mean, I wear a hazmat suit, whatever you want me to do, I'll do it. There just has to be a better way this is not going to work. So I started making some noise. And it eventually got the attention of the corporate office again, I was on the news quite a bit. I had a couple of reporters pick up the story in Jacksonville. And the facility called me out of the blue at the end of June of 2020 and said we have a job if you want it. And I said I'll take it without knowing exactly what I was getting myself into. And I said what is it and they said it's a dishwasher. So dishwashing, it was so I started on July the third went in for my first shift. And after five hours I worked five hours that day doing lunch and dinner dishes. I got to go in and see Steve for the first time after 114 days.

Don Priess: 9:00

Was there any pushback initially for them? Are you even seeing him once you were in there? Because you're coming from the outside you're coming from outside you're not staying there.

Mary Daniel: 9:09

They told me on that first phone call that it that after my shifts I would be able to go and see him and stay with him as long as I wanted to that was on that very first initial phone call. I will tell you that I was I mean I was so cautious my brother in law's a physician here in Jacksonville I went to his office before every single shift they did not require me to do it but I took a COVID test before every single shift I knew you know what the intention The story was getting if I'm just the person that brought COVID In this was not going to go well no so I was a lot of pressure to be absolutely that I was being careful that I was not going out and being careless and doing things that I didn't need to be doing you know to bring it into the facility so so they they let me in and once that once that job started the the local reporter here did a story on me being in. And that story went viral.

Susie Singer Carter: 10:03

Right? And so before before you got the job in July. So do you. What What kind of pushback were you getting before that happened? I know you said you went, you ended up going to reporters into the news stations and getting an you know, causing some noise. So, but during that time, you were getting pushback, you weren't getting any cooperation, right.

Mary Daniel: 10:23

And he was so focused on the COVID, that they were losing sight, they had no thoughts about what the isolation was doing. Right. And that's why the group when the story went, went went viral, I started the Facebook group caregivers for compromise. Because isolation kills to write with the real message that we understood the lockdowns were done to the best of intentions, there's no question in my mind about that. It's what we thought we needed to do. But we were we really didn't give any thought to the fact that isolation kills two that we, you know, we ended up seeing, I mean, you know, 1000s of death certificates with the cause of darkness, failure to thrive. Sure, because people gave up they they weren't seeing the people that they loved. Many of them thought that they were being punished, what have I done, you know, just my daughter not love me anymore? Yeah, all of these things that you're not able to explain to a dementia patient, particularly for them to understand what was going on. And so it was incredibly painful to have to watch this through a window. So many people had to watch their family members die through a window, that our message was the isolation kills to and that was the part of the story that we wanted to tell. And thankfully, it got the attention of Governor DeSantis his office.

Susie Singer Carter: 11:40

Do you think it was because of the the news? That is the thing that pushed it over?

Mary Daniel: 11:45

There's no question about that question. Question. Because I mean, I've been writing him for months, you know, right. And you know how that is never getting any sort of answer back from anybody. But he he was at a news conference, and he mentioned a woman in Jacksonville who took a job as a dishwasher. Okay, so I'm on his radar. Now, I know I'm on his radar, the next news conference, a few days later, he mentioned my name. He mentioned me by name, right. Okay. Okay, we're getting now you're cooking. Okay, exactly. And then I got a call from his office saying he was going to be in Jacksonville and wanted to meet with me. I had no idea anything about the Taskforce. But we did, I sat down and met with he and his wife. And as soon as that meeting was over, we went into another room where there was a press conference, and he announced the establishment of the task force and that I would be a member of that task force. I

Susie Singer Carter: 12:34

love it. I love it. So I laughing a little bit. Because I think the fact that they too, they chose dishwasher for you, which was actually a gift because that isn't thought I would take it. Exactly, exactly. So but the fact that you did and it was dishwasher and so that, but that in turn really helped you because it gave you the kind of publicity that love will out. And that you know, it's dishwashing, right.

Mary Daniel: 13:05

If I had been the activities director, you know, or the receptionist or part time receptionist, yeah, it wouldn't make any difference whatsoever. It's funny, I actually wrote a letter, an email a couple days ago to the CEO of ALG, SR is the corporate office where my husband was to thank him. I mean, none of this, you know, the changes that we've been able to make, and, and, you know, being with Steve, you know, in so many, you know, 10s of 1000s of other people who got to be with their loved ones as well. I mean, none of it would have happened if they hadn't offered me the job. I mean, nothing would have happened, you know,

Don Priess: 13:42

it wouldn't have been out there. And you wouldn't have been on any radar, it would have been nice if you

Susie Singer Carter: 13:47

just thank them. But it was nice of you to thank them, because I don't think that they thought it like you said it was gonna go that way. But it was classy of you to do that.

Mary Daniel: 13:57

Well, when when we first started that my very first day, they called me in and said, Oh, we're going to have a conference call with the corporate office was in North Carolina, and I said, okay, and they said, We want to be sure you understand on page 47 of the manual that I hadn't received yet. My employee manual, it says you can't speak to the media. And I'm thinking to myself, Okay, I see what we're doing here. I see how this is going to work. And they said, we have a PR guy that you're going to have to work with, and he'll arrange everything for you. And I said, Well, I'm going to need to get his number because I've got a reporter who's meeting me outside when my shift is over right today. So it turns out he is an amazing guy. We he and I hit it off wonderfully. We have become wonderful friends. He saw the story for what it was is a great you know, not only a good heartwarming story, but also good for the company. Let's use this to be good for the company. And that's what I've told them all on Walmart. You guys are a part of this and we need to use that that this is As a type of company for whatever reason, once this once it started rolling, they were right there with me, James Harvey was the PR guy. And he and I, back to back to back to back interviews had him arranged had him I mean, you know, organized, we were really working together to really make the most of this and to get the most out of it. So it was a pretty cool experience.

Susie Singer Carter: 15:19

That's great. That's good. It was a happy accident, probably, you know, at the end of this, right, exactly, yeah, not to keep a noon. And I don't mean to be negative, but I'm just wondering, I'm just want to keep pulling it back to like how much, you know, serendipity also went into it, and like, and sort of good, good faith for you that that all of this, like, it all worked, it all work just right. And like, and that's what you hope for, when you're advocating, and when you're trying to make some changes that you don't know how it's gonna happen, you just got to get out there and activate it, and whatever, you know, you, you can't predict. And I, and I just wanted to highlight that because, you know, you had no idea that they were going to offer you that, and that was the best thing they could have offered you. And they probably and obviously didn't predict it. But then it's like, hey, we all won. Right? From doing this. Right. Exactly. And, and so that's hoping, like, you know, and I keep bringing it back, like to a bigger reform that we need, you know, which is we're dire, you know, we really do need that. And that's, that's the whole thing is that, you know, just look at this lady what she's done this lovely lady, that, you know, we all can do that. It just it takes it takes love. That was your motivation right at the beginning and 100%. And so love, love conquers all, right? I mean, it's true. And, and ingenuity and, and resilience,

Mary Daniel: 16:48

I had no idea what it was going to look like, I just knew, after sitting still, for a couple months, I knew this wasn't getting me anywhere. And so I just felt like it that, if nothing else, if nothing worked, if even if I didn't have any success, I wasn't just gonna sit back and wait for it to happen to me, I was at least going to be able to say I did my best to try to get to him. And that's what I was shooting for it. The first I'm not gonna sit here and let them tell me what it is we're going to do and not do somebody has to see what this looks like, these people need to see what this looks like so that they can be sure that they understand the harm that's being done to these 10s of 1000s of people that have just been basically locked away. Right. Right. And with loved ones who want to get to them, you know, people and, and, you know, not everybody else knew what to do. But the beauty of the caregivers for compromise group is they all got to follow in behind me. And we started educating people on what they can do in their own states, providing them I mean, you know, I said it 1000 times, educate yourself so that you can educate them. And then was the administration of the facilities, you're buying petitions in your area, your legislators who are deciding what's happening here, we need to educate them so that they understand exactly what this looks like up close and personal.

Susie Singer Carter: 18:07

Absolutely.

Don Priess: 18:08

Did you think there has been or will be any residual effect on isolation, because this was very, you know, COVID was a very specific thing. But in the future, I mean, we you can see it when you walk into some of the that some of the residents are isolated, they stay in their rooms, everything. Do you Did you see any type of shift for conquering isolation in the future? Or do you think it's just going to kind of go back to where it was?

Mary Daniel: 18:35

Well, we are currently working on a federal bill, to be sure that it never goes back to the way it is there's going to be something else down the road. There's going to be you know, even a flu outbreak. It could be a flu outbreak. It doesn't, you know, it doesn't have to be a a COVID type incident. We had somebody with a facility here in Florida that shut down over Thanksgiving, not this year. But last year over a scabies outbreak.

Susie Singer Carter: 18:59

I was gonna say something like that. Yeah, yeah, that now they know they have

Mary Daniel: 19:03

the power to do it. And so before they've never done it before, they've never actually slam the doors closed before. Now they know they have the power to do it. And so they're doing it, they're continuing to do it. So that's why we're continuing. We are we are far from being done. We are working on a federal bill. It was really It will be reintroduced in a matter of weeks into the new session of Congress. We have 80 co sponsors already. And we anticipate that in this session, we can get it passed in this session. So we're working to be sure. And it's basically similar though to the law of Florida and essential caregiver, two essential caregivers will always be allowed to go in following the same safety protocols as staff. That's all we ask. We'll do whatever the staff is required to.

Susie Singer Carter: 19:47

Yeah, that's awesome. And so I mean, I don't know because I haven't done my research yet on this in terms of the different states and how they have responded to This movement I know that it nothing changed, at least in California that I'm aware of. They listened to the CDC. I think the first time I saw my mom was like a year, like 13 months before I actually saw her in person. And it was 10 feet apart outside with my side. Yeah. And I was I went to my car crying because it was so frustrating, almost worse.

Mary Daniel: 20:26

Right? Right. Right. How do you say I can't touch them? I mean, how do you? How do you say that I'm not allowed to touch them. And in fact, for me on the task force, that was a real a real area of that I fought very hard for the Surgeon General Florida was gonna let us back in but not let us touch. And I mean, I sat right here at this desk one day, and I mean, in the middle of a meeting and slammed my fist on the table. And I said, that's a deal breaker for me. We have to be able to touch I have to be able to hold his hand, I have to be able to rub his back for him for Alzheimer's for dementia patients, that human tasks communication. That is it. That's how he feels my love is me holding his hand rubbing his back and giving him a hug. So you have to do it. And he finally agreed, he said, we're going to put an asterisk by this. And if we see an uptick in cases, then you will you agree to come back and revisit it? And I said, Yes. And I'm thrilled to tell you we saw no uptick in cases when we when we got to go back in. I doubt it to the governor, it was very simple. I sat there in front of he and his wife and I said to them, Why am I allowed to touch my husband as a dishwasher? But I'm not allowed to touch him as his wife. Right? I mean, it was pretty straightforward to me. I can all I had to do was wear a mask as the dishwasher. That's it. Right loves no down nothing, just a math thing. And I continue to do that. I will absolutely I will continue to wear a mask if that's what the staff is required to do. I'm more than happy to do that. And he said, I don't know. But we're going to fix that. And he did. And he did.

Susie Singer Carter: 22:04

And there's so many there's so many regulations like that there's there's not enough regulations in other areas that need regulations, and then there's over regulation on things that don't even make sense, like what you just said, which is so it's just it doesn't make any sense. It's it's it's it's just counterintuitive. It and, and hypocritical, right? I mean, I when my was good, when I would go to visit my mom, I could finally get in there as her essential care as she was, you know, getting worse her her health. And, you know, there was times where they would have those the yellow zone up, because there would be an outbreak. But there was no difference between the people going in there. And out of there. It was just

Don Priess: 22:50

optics somewhere. Yeah. So I had to give big gowns and the mat and others just came in it did there was no

Susie Singer Carter: 22:57

there was no it was all just poppin and like Don and I we always laugh about because you know laugh in a not in a good way. But you know, when we got to visit my mom during that time, it was like, half the time there was a sign in sheet where they take your temperature and you'd have to show your COVID tests and everything. And the other times there was nobody there who just walk in, you just walk

Mary Daniel: 23:18

in? Yeah. Well, you know, what I've said all along is the the truth of the matter is, they didn't work. It didn't work. It didn't work didn't keep the COVID out of the facilities, it didn't. So we needed we needed to not only did we lose people because of COVID in the facilities, but we've lost people from failure to thrive from people on the wheel to live, you know, and you

Don Priess: 23:41

know, if it was more, do you know if those numbers were more on failure to thrive than they were for? COVID?

Mary Daniel: 23:47

Yes, that's a very good question. And that's not easy. That's not information that they'll easily release, right? They don't want to see, but that's literally what it says on the death certificates is failure to thrive.

Susie Singer Carter: 23:59

Oh, by the way, I have an issue with failure to thrive as a as a you know, as a go diagnosis for death. I mean, I you know, and I've been posting about that too, because, you know, I heard that ad nauseam about my mom, she has failure to thrive and she didn't have failure to thrive. That's it's a blanket, you know, kind of statement that that? Yeah, yeah. So, you know, failure to thrive. That means, you know, you tortured somebody by making them be in isolation like you would a prisoner and putting them in solitary confinement. Well, that's

Don Priess: 24:35

the thing is the ultimate in punishment for a prisoner is putting you in cell is to isolate you. That's the worst. That's the worst. So what are we doing?

Susie Singer Carter: 24:44

What are we doing I mean, who who who would brilliant idea was that this is but but you know what it does marries it bleeds over into the bigger problem, which is quality of life instead, right? So There's a there's some kind of, there's some kind of misc, misunderstanding or misinterpretation of what healthcare is because healthcare is all everything. It's it's wellness. It's it's, you know, absolutely inside and out. And you can't have one without the other babies don't survive without being touched. Right? You can't. That's why nurses, that's what they have people that come in, they pay them to hold babies that are in, in the NICU, right? Because babies need to be held to be held short,

Mary Daniel: 25:37

it's such an human instinctual thing I was telling a story just yesterday about a while I was there washing dishes and one of the A friend the woman lived there in the same facility as Steve, her husband and I weren't as in a group support group together. So I knew them. Well. I knew Kathy well. And as I was leaving Steve's room one day, the other visitors were other family members were not allowed in and I saw Kathy going into another patient's room. And I was calling her out. And she called let me come walk with me. And let's, I'm going to take you to your room. You know, we look out for each other's family members when you're right. I mean, and so I she comes out and she and she, she ended up dying. I actually looked it up yesterday, she she died six months after my encounter with her. So she was you know, she was in pretty bad shape. And she walked up to me, and I was walking her to her room. And she stopped and she looked at me and she said, Will you give me a hug? Yes. And I almost And I almost do it. I kind of looked around to kind of see Is anybody else is there anybody here who's gonna see me and I'm gonna get in trouble for giving her a hug. And I did it. I just gave her this most amazing, wonderful hug. When I got the car. I called her husband. And I'm like, I just want you to know, I just gave you that she articulated it a woman in in, you know, final stages of Alzheimer's. That's right. Can you give me a hug?

Susie Singer Carter: 26:59

Yes. Tell I'm getting chills.

Don Priess: 27:03

All right, she needed she needed that more than anything. She didn't ask for anything else. Can I just say the most

Susie Singer Carter: 27:10

Can I just before we move on from that is like how, how profound that is, for everybody that that they the bias against first of all ages, and then the bias of Alzheimer's and dementia that that is in our healthcare system built into it, that they're not there. There. They don't exist, because they can't because they've lost skills, right? So it doesn't matter. It doesn't matter. But the fact that my mom after three months when they said she had failure to thrive, and we're trying to just not take care of her, which is why I'm doing this documentary. She Dawn was in the room. And we you know, I was always doing a dog and pony show, I could get her to laugh, you know, we'd sing but out of nowhere, and she hadn't spoke in three months. She just said I love you perfectly.

Don Priess: 27:59

And she never said anything else after that. After that, just other than

Susie Singer Carter: 28:03

I got it a laugh. We got her to you know, she would go you know and like sing and kiss.

Don Priess: 28:08

Never said any other words before it

Susie Singer Carter: 28:10

was it. But I'm telling you, if you if that doesn't tell you that they're in there, and for that woman to say will you give me a hug? And I told my mother this too. I said, What a feat you just did. I know how hard that was for you to get those words. Find him. Bring them on down, get those synapses going and get it out. And she did that because she needed it so much. And my mom needed to tell me that she wanted me to know that.

Mary Daniel: 28:38

And you'll never forget it. I mean, it's just as powerful. Right?

Susie Singer Carter: 28:42

I was like, I was in tears. Donald tell you I go she just gave me the greatest gift ever. Right? That die. No, my mom. She was like, god dammit, I'm getting I gotta tell her because she I know her. I know her. And I said, Mom, you did that you did it. I was so happy. And so proud of her.

Don Priess: 29:01

And if either of your mom or this other woman were completely isolated, never I mean, they wouldn't have anyone

Susie Singer Carter: 29:07

would have been dismissed because Oh, she has Alzheimer's that she was at the end of her Alzheimer's. She's, of course she's. She's locked when there she's still alive. And guess what? She needed a hug.

Mary Daniel: 29:18

Right? That's right. And I almost didn't do

Susie Singer Carter: 29:21

I did right. I'M SO GLAD YOU DID. it.

Mary Daniel: 29:25

I might get in trouble. I might get in trouble. Like, you know what, screw this. Right, the best hug I have ever given anyone ever. Ever Forget it.

Susie Singer Carter: 29:35

You won't. You will never forget it. I will never forget her.

Mary Daniel: 29:39

at her funeral. I told the story at her funeral. Because it's just something that it was it just tells you the instinctual nature of touching each other and holding on to each other, that we don't even have to realize what it what it means. It's just part of who we are. And it's just the base

Susie Singer Carter: 29:56

of men. We're social. We are that's what we are We need connection. That's what keeps. That's why people die. We need connect connection. And I told the story before but there was a group of, of 90 year old, you know, they were the cool click at the facility. My mom, was that, right? They were all they didn't have. They didn't have dementia. They were all you know. Cool. Cool as hell. Oh, and every time I would sing with my mom, when my mom could still sing, they come over up Susie singing Come on, you know, and like, they were right, done. They were all like, they were like the cool clique. And it is heartbreaking, because every single one of them died during COVID. And they were all separated. They were all separate. That was their lifeline was each other.

Don Priess: 30:45

And they were so vibrant, and so vibrant.

Susie Singer Carter: 30:49

We loved them. Yeah. And

Don Priess: 30:53

to know that they were all just then basically put in solitary confinement. To what end? To what end?

Mary Daniel: 30:59

I remember about Steve that he has a terminal illness. Yeah, he's going to die. What am I saving him from it?

Don Priess: 31:07

Bill? This Yeah, it's not about the amount of days. It's not the amount of days it's what happens in those

Mary Daniel: 31:17

days, I mean, those days that I'm missing where his very best days, and you know, he said he's gonna decline tomorrow and the next day and the next day? He's,

Susie Singer Carter: 31:25

yes, yes. Yeah, that's me chills all day long today. I mean, exactly. You're just hitting me right where it is. I mean, you're, you're articulating it beautifully. I mean, it's, it's exactly that, like, I feel so robbed. From that year and a half, whatever. Year in

Don Priess: 31:46

two months. Yeah, whatever it was.

Susie Singer Carter: 31:49

And even in even though I got to see her once that, you know, with 13 and a half months, then it was another month before they let us see her again, because you had to sign up. And it was like they only had so much staff to like, oversee us to make sure we weren't pulling our masks down. And so I didn't really get to see her until she got so ill and went into the hospital

Don Priess: 32:12

from vanced. At that point, yeah,

Susie Singer Carter: 32:15

that was from the wound because she was being neglected. But, you know, that's the thing. I feel robbed. Because I and I was, I would tell everybody the same exact thing. I'm not delusional, I know my mom is going to die. Sooner than you know, I want and I know that that's why I want to love on her now. That's the urgency of that is the urgency. This is why her year of life is actually more valuable than someone who's 40 years old. Have they got a lot of years ahead of them? She doesn't. Right, exactly. And it's meaningful to us. And it's meaningful to her. And if that's not important than none of our lives are important then because we all are ending at some point.

Mary Daniel: 33:01

That's exactly right. Right.

Susie Singer Carter: 33:04

So can I want to pivot?

Mary Daniel: 33:06

We could talk about this all day long.

Don Priess: 33:09

But I want to do you talk about it every day?

Susie Singer Carter: 33:14

Yeah, we all we do. I talk about it all day long, too. I saw a post on Instagram that Mary wrote about, I don't know, two weeks after, after Steve passed away. And it was just really simply, you know, now what, and I really it hit me so strongly because I my mom had Alzheimer's for 16 years. And so I was hurt. I mean, my stepfather passed away. Eight years ago, 10 years ago, Don, I'm trying to remember but so for the last 10 years of her life, I was really her person. I was her person. And that's a long road. And I, I remember, and especially that concentrated of this past year, was so concentrated. And, and I thought will and not that it was my whole life. I mean, I have children, I have a career. But my mother is was I was I felt like I was her mother and it was so important for me to make sure that she was happy and healthy and and in the best way that she could be. And then what and then she's gone. Right? And there's so many mixed emotions with that and what do you do and how do you how do you move on and and keep your life as significant as it was so throwing that to you?

Mary Daniel: 34:45

That's I'm figuring that out. We're three and a half weeks into this. I've been a caregiver for Steven his parents for decades. Certainly for him, his father died Two years ago, and a week or so it'd be two years ago. And so I was his sole caregiver as well. I'm, for the first time in decades, I'm not a caregiver anymore. And that's a weird thing for me to sort of accept or experience, I don't know how to not think about I mean, for, for me, where this time that we're talking right now is the hardest time for me. Because this is when I spent time with him, I went with him in the evenings. And I mean, there was never a time I was at home. At this time of day, I was always with him when the sun went down, and got him tucked into bed, and then I would come home. And so every day, many days, my car, even the GPS on my car actually says rose Castle it dear What I had to go in, and I actually removed it. Because I didn't like it popping up every day when I backed out of the driveway that it's telling me that that's where I normally go at this time of day, you know, it's 11 minutes away for me to get there. So it's a real sort of shifting in a mindset of of consciously doing something else of making myself get out, take a walk, get some fresh air, you know, meet friends do things that show I'm not just sitting here in the house. You know, I lost I lost my parents, both my parents young, I was 17 When my father died, I was 29 when I lost my mother 30 years ago, and I learned a long time ago that okay, this is gonna sound really weird, but I actually appreciate and like grief. Because I, I want to cry, and I want to miss them. And I want to feel it in my soul that this person who I gave so much to and who was such a huge part of my life is gone. I want to feel that. And so I want to cry and I I am and so I do so I'm I'm taking it, you know, I Wednesday of this week of this past week was a really hard day for me, I spent most of it crying. I woke up Thursday feeling so much feeling alive again, it was a beautiful winter day here, you know with it. I mean, I'm in Florida. So it's you know, 70 degrees and not a cloud

Susie Singer Carter: 37:09

Burr. Burr!

Mary Daniel: 37:14

Or perfect kind of winter day, and my life's good. And I and I know that I know, my sister sent me a text and she said, um, you know, I'm sorry that you're so sad. But she she wrote, but I know because that's the way mom raised us that you're going to be okay. And I do know that I do know, the only way through this is smack dab down the middle. And the only way I get to the other side is if I experience it right in the middle. If I tried to take detours and try to hide it and and not let it be a part of my life right now, then, then that's not good for me. And I need to experience it. And so that's what I'm doing the decision now is, you know, what am I going to do with my time with my advocacy? Right? I mean, there's so somebody said to me, Mary, the, you know, the nursing homes need such huge reform. You know, maybe that's the next thing. And, you know, I don't I don't know yet I do know this visitation is we're not done there. Florida, I'm working on a constitutional amendment in Florida. The head of the nursing home association here told him after we passed a law that went into effect, it's called the no patient left alone bill went into effect July 1 in Florida. No patient in a hospital or a nursing home or long term care facility will ever be left alone again. After that was passed, the head of the nursing home Association told a reporter that I've become very close to that, well, as soon as we get another governor, if they don't like how this bill is working out for them, we'll just get a new law, we'll just we'll get rid of that bill and get it and make it go away. If I do a constitutional amendment, it can't go away. And my caregivers for compromise group in Texas has done a constitutional amendment in Texas for their bill. And so we're going to work on that we're going to get a constitutional amendment here in Florida so I can be sure with our large elderly population that stays in effect, and then I want to do this federal bill. I want it to be consistent. Part of the big problem is everybody in every state is doing it differently. Yeah, but facilities across the street from each other that are allowing different things. And this has become a it's an interesting, it's been an interesting thing to watch the power struggle the way we've become adversaries with the nursing home associations with the nursing homes themselves. Instead of being able to work together and do it together. We're doing it. We're like we're against each other. And that doesn't make a whole lot of sense to me. So I am, I do want to work on this particular bill and then and then we'll see what happens. We'll see what what comes up next.

Don Priess: 39:43

It's so counterintuitive, because you figured, okay, these reforms will benefit the nursing nurses, you're going to have happier, healthier patients easier to take care of. So for them to be pushing back on this makes no sense

Mary Daniel: 40:00

gets power, and it's really my buddy telling them what to do and how they're gonna run their business. They want to do it exactly. And money,

Susie Singer Carter: 40:07

right? And it's touching, it's touching, right? And

Mary Daniel: 40:11

money is what drives all of this, isn't it? I mean, even even though you know, our politics, so that's it. And it's, and I'm not, I'm not willing to accept that not, not when we can work together, we can do a better job of listening to each other, and making it a better place and, you know, better arrangements for our loved ones that does benefit them, I don't care if they make money, I want them to make money.

Susie Singer Carter: 40:35

I don't care if they make money either, but it has to be done, you know, with with a conscience, it has to be done, you know, like, you know, I would like to see as much energy that goes into pro life. Right for pro life. Right. Okay. All right. I mean, let's see that. Let's see that groundswell happen. And as much as it does the other way. There's so many politicians that are, you know, hanging their hats on pro life,

Mary Daniel: 41:05

if you've never been in one of these places, if you've never seen what this looks like, you know, if you've never experienced it from the inside, it's very hard to explain to people what it looks like, and what's really going on in there. You know, when there's when there's not staff, you know, I, there's, I can't get anybody to one of the last days we were there, gentlemen fell, and I, you know, I couldn't find anybody to help me get up. And I took a picture of him and I sent it to the main to the head of the Florida Division. And you know what he did? He scolded me for taking this man's picture.

Susie Singer Carter: 41:40

That's right. That's right.

Don Priess: 41:42

That's what's important. That's what's important. Yes, I

Mary Daniel: 41:46

said, I'm trying to tell you what's happening, do you know what's happening

Susie Singer Carter: 41:51

because very, they do know what's happening. They're very aware of what's happening. They, they, that's what's the problem is, it's systemic, and it's very, very, it's, it's, it's been woven so tight, that we need to break it up. But it isn't going to be, you know, we can do we can do what you're doing is, is great because you're, you're dealing with what's happening, like, immediate, like this immediate thing that and, but we need a we need 10,000 Mary's with to to address the other 10,000 problems that are is just as bad as the isolation problem. And you're just one person. That's why and you so I'm, I'm being very so on my soapbox today. But, but, but because it's true, we do and I'm not being I'm not trying to. And I'm not I've never been a political I'm not like the girl that was you know, marching down, you know, yeah, I went to the feet to me too movement, but only because it was fun. My girlfriend's going to art. You know, we went, it was fun. I made the hats for my friends. Right? But this this is, guys this is so this is so horrible. It's close. You know, I'm gonna get in trouble for saying this. Go ahead. I'm sorry. It's genocide. What's going on? I'm just telling you, there's ageism. And people are suffering and dying. needlessly. And and nobody, nobody knows it. Because they have not. They don't know it. You don't know what you don't know. I didn't know it. I didn't even know what a bedsore look like I tell my mom had stage four.

Mary Daniel: 43:40

Right. I didn't know what I'm trying to say to all the caregivers for compromise is what my mantra is now. And what I say my purposes now is to empower caregivers, to boldly advocate for their loved ones. So they look back with no regrets. Right. And it's exhausting. I mean, there were days at the very end, when Steve was me. He was getting aggressive with the staff and so they just decided they weren't gonna brush his teeth ever again. That's right. You know, they're gonna punish you. He doesn't want his teeth brushed. Are you kidding me? Right? Am I going to have to argue with you every single day? And we're gonna have the same argument.

Susie Singer Carter: 44:16

Yes, I am. Yes, you are. And I did it.

Mary Daniel: 44:20

I'm doing it. I'm gonna do. I'm exhausted. I said that one of the last times. I was arguing with them. I said, you know, I mean, I started crying. I'm like, You think I enjoy this? Do you think this is what I want? You know, I want my life back. I want my husband back. Yeah, that's, I want to go and be with my husband and do the things that we used to do. I don't ever want to step in this place ever again. I hate this place is right. I don't think this is what I enjoy. I have no choice. I have to fight for him. And I'm going and listen, it's me. Right? I think what they're doing for people to people who aren't like me who are in there every single day. What are their teeth looking like? What was the last time they were bathed? All these things? anyways, this happened, what happened to Steve and I was there

Susie Singer Carter: 45:03

every day, I was there every day for my mom. And every day, as you know, I don't want to get people sick about it. But, you know, they put my mom on NPO for no reason, for no reason other than they were understaffed. And I had to come and pull chunks of Dr. mucus out of her mouth every day, they only let me give her liquid on a sponge to suck at, they wouldn't do it, they wouldn't do it.

Don Priess: 45:30

And then you become the enemy. I would walk in with Suzy and you know, I wasn't the one complaining. And they looked because I was with Suzy, they looked at me, like, they wanted to kill me, because she was advocating, and a very, very nice way. Honestly, Suzy was, you know, I mean, she was strong, but she wasn't, you know, mean, or, or you know, vicious, but they would they wouldn't even you'd say hello to them, they wouldn't even say hello back, they would just turn away from you. And that,

Susie Singer Carter: 45:58

you know, when you're nice dealing, we get a lot, you get gas getting nothing, you get gas lit. So I would say Hi, you guys. I know you're understaffed. It couldn't be possible that we could call the wound doctor, whatever they like. Yeah, yeah, we'll look into that. We'll look into that. Thanks for letting us know. You know, so that doesn't work.

Mary Daniel: 46:21

No, what you're saying is so true. It was it was like that at the end. I could tell. And we were we were in we were in. And listen, Steve was in a good facility. Right? I mean, let me see.

Susie Singer Carter: 46:32

My five star. Yeah. So it doesn't mean

Mary Daniel: 46:35

anything. It doesn't I mean, where I just, I couldn't believe that they're giving me a hard time because I'm trying to do something that's in the best interest for him. I mean, we were on our seventh Executive Director, and the three and a half years that he had been there. And when I would say that the new director would say, You know what, I'm sick and tired of you throwing that my face. I'm not doing it your face. I'm simply telling you, we've had seven of you. Okay, I know how this works. So you're act like that's not a fact. It's a fact. And you have to understand that your staff number one, and your residents, families know that you may be gone next week. You know, that's just a fact. You know, the person, I'm the bad person because I kicked out. I'm not throwing that up in your face. I'm simply saying you're changing rules for no reason when they don't mean it's just a mess. And that constant battle, I can tell you, I'm I am truly happy to be over that internal physical battle that I have felt for the last couple of years right.

Susie Singer Carter: 47:43

Here, girl, let me tell you something, my mom, like you didn't want you. I know you didn't want Steve to go. And you want. I didn't want my mom to go. But the last week of her life, I was like I this was my worst nightmare was to say goodbye to my mommy. I was like, just die, please. Because I cannot see you go through this anymore. Right? That's exactly because I couldn't make any more changes. I couldn't help her anymore. And I sat there watching them,

Mary Daniel: 48:17

isn't it so sad just said place to be as their as their kit caregivers, their daughter is their wife to be in that point. Where I know, I mean, I've said to his kids, I mean, I have three step kids that are all grown and, you know, said to them, the truth of the matter is as much as we miss him, we don't want him back like that. We don't want to be back. We don't want to be back in that place. We don't want to have to be living like that again, you know, so it leaves us at peace.

Susie Singer Carter: 48:47

Yeah, I remember going back to get her stuff. And I wouldn't I didn't look at anybody there. And I know that so many of the of the providers and the CNAs and the people that are in the trenches, their hands are tied. They're looking over their shoulders, because it's called coming from the top right.

Mary Daniel: 49:07

That's what you know, when I can't find anybody when I'm hollering for somebody to come help me or we wouldn't be locked in is when I couldn't get out to go home until I found a staff member who could unlock the door and let me out and so sometimes I'd be sitting there 1520 minutes and you know, when you leave the room at eight o'clock at night, I want to get the hell out of there. I want to go home but I do I don't want to just have to sit there and watch all these other people kind of wandering around like zombies while one staff member it's not her fault she's in the room with somebody changing them getting ready for bed, it's not their fault. But here I am just sitting here for 1520 minutes waiting patiently for somebody to come out of a room so we can get the hell out of there and go home I mean so many nights you get in the car and just cry you know so many parking lot and just cry

Susie Singer Carter: 49:53

me too. This is how many yeah awful and I'm guarantee people listening are have done the same thing. This is why I'm telling you folks. And you know, I have nothing to gain from this, you know, personally from the documentary but and you like your fight what you're doing, you know that we have to do this. We have to get this done in a big way because it is horrible. It's horrible the way it is right now. It's not sustainable. It's only going to get worse. You know, CMS is going to make an announcement in February about staffing regulations. There's going to be new minimums, but the nursing home lobbyists are going to be fighting against that. And, by the way, we've had regulations in California for you know, a while now and there's no oversight. So guess what? It doesn't matter? Correct. It doesn't matter. Because I said to the director of of our five star facility, I said, I know you guys are understaffed. No, we're not. Okay, but your CNAs are telling me that there's they're exhausted and asking me to help turn my mom. While Vince shouldn't be doing that. We're not understaffed. Okay. There's no pillows to even do it. That's, that's right. There's, you know, they were stuffing dirty blankets to prop my mom up and I go, I'll bring in, I'll bring in pillows. I've got a lot of pillows at home. I came in with like bags and bags of pillows, and like, what are you doing? We don't need those. And I go, but you do because they don't have them? Oh, well. That's ridiculous. We don't need them. It's just the last

Mary Daniel: 51:38

month of Steve's life. I actually hired my own CNA to get you eight hours, days a week to brush for you. To close to be sure we doubled the amount of depends that we were using. Okay, which will tell you right how often what's going on? Yeah, right. That he's important. Yeah, at least bathe down, you know, a sponge bath every day. shaved, knew he had his facial hair. He has never ever had facial hair ever. And I've known him 30 years. And he had this long string, you know, because they just they just weren't doing it. They weren't. And they said it was because he was being difficult that he didn't want them to do it. Well, my own CNA did it. She was getting shaved. Yeah. Yeah. So I knew it. I'll tell you as expensive as it was. I'm so glad that I did it for that guide. You did it to a level that he was just being cared for at a completely different level. I'm glad

Don Priess: 52:39

you're unfortunately most people can't do that. Yeah, unfortunately, most people can't. Most people can't.

Susie Singer Carter: 52:44

Yeah, yeah, I just I, I actually had someone in her ad shoot. Her husband died of Alzheimer's a couple of years ago, but they're very wealthy here in Los Angeles. They live in these high rises. And I interviewed her and she said, I was so fortunate that my husband made enough money that I could get an apartment, right across the hallway. I hired three, you know, nurses to be with him around the clock. And he lived the his last, you know, year, whatever it was beautifully. And she could go back to her own apartment so that she could get her strength back again. It was like, but she said, I know that I am such a small percentage. It's not reality. Yeah. Right. Right. So this is this is not a way to look forward to getting older.

Mary Daniel: 53:31

It scares me.

Susie Singer Carter: 53:33

It scares me it should.

Mary Daniel: 53:36

I really, it is something that I'm just sort of coming to terms with. I just turned 60 in October, and it is something that I think about that, you know, I need long term care insurance, but

Susie Singer Carter: 53:46

Gol is not that good.

Don Priess: 53:49

Right? And it's not it's not like it used to be. Yeah, my dad used when he first bought long term care it was for the life it was then suddenly they said, Oh no, no, we are now changing that now. It's capped at 140,000. You know how fast that 140,000 goes. It sounds like a lot of money. It ain't and they only divvy it out in small portions. Every month, they would do he'd get like 2900 a month, which helped. Thank you know, it was great to have but it's not the it's not the answer. What do you feel are the chances for true reform, you know, up and down the line? It's it's I mean, you don't want to be fatalistic and say Oh, well, there's no chance it's too big. What What can we do? You're doing it you know, but in a specific area. There's it's so big. What can we expect true reform?

Mary Daniel: 54:41

I don't have much hope for that, to be honest with you. I really don't I mean, in that said, I feel the same way about Alzheimer's research, which is a whole different topic. That I I'm very pessimistic about it. I just think you've got too many people that are making too much money in both of those realms, by the way that are not going to be willing to give that up. Do what the right thing is. And that's what scares me about myself. Oh, you know, I think about myself, what would I do if I got an Alzheimer's diagnosis? You know, I mean, it would be? I mean, it is and I don't know, you know, I mean, I do think that there are people I mean, I think that there are people with with the best of intentions. And I think, you know, we have in our group we have, we find a lot of people who loved one dies. And some of the group says, you know, I can't, I can't believe we haven't heard from Allison, you know, in a couple of months, she's, you know, wants now that her husband's died, she's kind of gone away. And I tell everybody, this is a personal choice, you have to choose what you how it has affected you. And you can decide whether or not this is such a proud, you know, a profound effect on me that I'm going to continue to fight this battle or not, and there is no right or wrong there in what we decide to do. But there's people like you and me, Susie, who really feel like that, and know that there are things that can be done to make it better. And one of them was certainly calling attention to it, which is exactly what, you know, we both have been trying to do in our own projects. But and I think that's certainly a start, and then you hope to when people are profoundly touched in their own life, when we have the politicians that are going to be affected by this in their own life, it certainly helps to get them on board to do something. Otherwise,

Susie Singer Carter: 56:22

let me let me just add to that I agree with you. And I want to say that the nature of being a politician is very much like the nature of being an actor, and I was married to one for 14 years. And as good as they are at their at their craft, they're not great as human beings, they're good at what they do. So. So that said, even if it happens in their family, it may not affect them that much, either, is what I'm trying to say. So what what will well, what will affect them is their ambition. And if that our ambition is looks like it might be on the line, that's going to affect how they make decisions. So if we can shame these people, and if we can make it look like we're going to take away their votes, or their support, and everything else, that's the to me, you know, is what what I intend to do. This is the nature of of ambitious people. So whatever it takes, guys, we have to do what we have to do, I may have to hire a bodyguard, I don't know.

Don Priess: 57:28

But I think that that, you know, you say you don't have, you know, very much hope for reforming, you know, the entire industry. But I think what we can take is from what you're doing, what Susie is doing is to at least make it better. And hopefully, if we keep making it a little bit better and a little bit better and a little bit better, then maybe that reform just is a it's a long term effect, as opposed to Okay, now, here's the news. And I think so we have to we can't we can't get we have to hopefully remain positive. And it's people like you, people like Susie who are helping do that. And so hopefully we can take that away from from what's being done. And

Mary Daniel: 58:11

let me tell you i in the work that I'm doing regarding visitation, we have to be present, not only to hold the hands and give the hugs, but they need to know that there are outside eyes that are on them who are watching what's happening inside of there. When that when you lose those eyes, when you lose the ability for anybody to hold them accountable for what they're doing, then we're in big trouble. So I even want to Yeah, is even right. And so me being fighting to get in it. This is at the very least being sure that they're going to be outside eyes watching what they're doing. And they're going to be held accountable for the actions that they're taking with our loved ones. Yeah,

Susie Singer Carter: 58:53

mate. Yes. Okay. I don't want to get negative, but I mean, yes, we need to be have eyes on them. But as it is right now, the way the industry is right now, having eyes on them and having that oversight doesn't really cause enough. It doesn't hurt them enough, even when was reported, you know, so it's really, right. So so becomes our responsibility to do damage control, which we're not in the position to do. And we need it that we need that oversight built in so that we can go to an abutment and go, here's what's going on and that ombudsman actually has the power and isn't just a figurehead in Florida.

Mary Daniel: 59:36

They're useless and are useless. I don't talk to them. I've never talked to them. There's no reason for me to talk to them. There's absolutely nothing.

Susie Singer Carter: 59:43

It's a waste of money states.

Mary Daniel: 59:45

It's completely different. There are some states that they are actually useful. I mean, I think Connecticut I think New Jersey may have Medicaid.

Susie Singer Carter: 59:53

Yes, that's because my Murray had painters there. That's why she's one of the best women in the whole world and she As she, she's going to be in our documentary, but she'll tell you straight up straight away. It's like, it is not good. It is not good. And she is the real deal. She She is right.

Mary Daniel: 1:00:13

She's worked a lot with our group, our Connecticut caregivers for compromise. She's awesome.

Susie Singer Carter: 1:00:17

She's, she's fierce. But we need fierce people. Let's go, who else is fierce out there? Help us. We're just two little girls here. Come on, and one guy, come on, we need your help we and we don't, you know, it's got not going to be radical, we have to really just be level headed. At no, this has got to change,

Mary Daniel: 1:00:40

boldly advocate. That's what I say it's boldly, it's not just you know, it's doing things that may be a little bit more out of your comfort zone. But it's boldly advocating, because not only will excuse me make a difference in these facilities and in the lives of so many people. It makes a difference in my life. Right that I when I stood at Steve service a couple of weeks ago, and I said to them, I stand before you with no regrets. I stand before you being able to tell you that I did everything in my power to care for him. And that's an incredibly powerful gift that I have. I will keep forever

Susie Singer Carter: 1:01:15

I with you. Amen. I feel I said the same thing. I said one thing, I don't have an any personal regrets. I did everything that I could do for my mom. And, you know, I was there with her to the very end, I got to snuggle with her after she passed. I mean, I I did what I wanted to do as best as I could within their rules. Exam. And I don't have any regret what I regret is the system that we've created that's so heinous, and that it took me this long to figure it out. That's the sad part that we and you know, and you and I and Don and and your coalition, our

Mary Daniel: 1:02:02

plan is to be sure that when it's time for us to go that we have no regrets and also working to do what we can do to change that system.

Susie Singer Carter: 1:02:09

Let's do it, everybody. Let's do it. Let's do it. Do it. Do it. All right. Well, thank you so much. This was a wonderful conversation. I know what now for you. Now. I know what now Now what will I'll think? Yes, I know that you aren't going to stop. So I've got some

Mary Daniel: 1:02:30

I've got some work to do. So some

Susie Singer Carter: 1:02:32

work to do. Yeah, yeah, we'll have to call each other accountable. Not that we need it. But you know, everyone, it does get tiring, doesn't it? Sometimes?

Mary Daniel: 1:02:42

It does. It does, that's for sure. But it's you know, it's it's I don't know, it's kind of like I've worked my whole life to be right here at this time. You know, I feel like that I was just the right person for the job and still am and so what

Susie Singer Carter: 1:02:56

better what better job? Right? What better? What better gift are you going to get from it? What what I think about it, I mean, I'm a filmmaker, I want to do my my comedy films and my love stories. And yes, I want to do those are great. But at the end of the day, what am I going to be most proud of? is something like this, that that really makes a difference. That's, that's what else can we get the best gift we can give and get. All right. Thank you so much. Thank you so much. It's so great because it all started with love with your husband. It all started with me with my mom. I love her so much. I will always love her so much. Why is it so profound?

Don Priess: 1:03:40

Well, because as we all know, and if we don't know by now, we just don't know this is that love is powerful. Love is contagious, and Love Conquers Alz. And we thank everyone for listening and watching today. If you like what you heard, subscribe, share. Take care.