Love Conquers Alz

THIAGO DADALT & KIRK MOODY: "WHERE IS NANCY?" - A First-Hand Account on the Realities of Wandering

November 28, 2021 THIAGO DADALT & KIRK MOODY/Susie Singer Carter and Don Priess Season 3 Episode 47
Love Conquers Alz
THIAGO DADALT & KIRK MOODY: "WHERE IS NANCY?" - A First-Hand Account on the Realities of Wandering
Show Notes Transcript

Wander (verb) - To walk or move in an aimless way.

Wandering is an all-too-common behavior amongst people with dementia, Autism spectrum disorder, and Down syndrome, and are a huge fear for those concerned for their safety and well-being. A person's failing memory and declining ability to communicate can make it impossible for them to remember or explain the reason they wandered.

In episode 47, Don and I had the honor of speaking with retired Manager, Systems Engineer, *Kirk Moody, and filmmaker, *Thiago Didalt.  Kirk's wife was a brilliant aerospace engineer and entrepreneur, top of her class at the USC/Davis and highly respected across the industry, Nancy Paulikas, 55, was tragically diagnosed with early-onset Alzheimer's disease.  In 2016, she left to use the restroom at LACMA (Los Angeles County Museum of Art), never to be seen again. 

Kirk led a relentless two-year search that helped to uncover the gaps in the USA's social and health systems and bring about systemic change across L.A. County by forming LA FOUND, an organization that helps caregivers of those living with Alzheimer’s, dementia, autism, or other cognitive impairments locate their missing loved ones.

We hope you find this very special episode helpful.  If you know someone who would benefit from this information, please share our LINKS to listen to LOVE CONQUERS ALZ. 

Loads of love,
Susie xo

* Filmmaker, Thiago Dadalt, made the fictionalized Oscar’s qualified short film, “Chocolate”, about a middle-age housewife with early onset Alzheimer’s disease who goes missing in downtown Los Angeles. Ironically, the film led him to direct the documentary about a family’s very real struggle to find missing housewife Nancy Paulikas. “Where is Nancy?” is currently making the rounds on the film festival circuit where it is gaining high praise and awards. 

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Don Priess:

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 - 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. Hi, everybody. I'm

Susie Singer Carter:

Susie Singer Carter. And

Don Priess:

I'm Don Priess. And this is love conquers all. Hello, Susan.

Susie Singer Carter:

Hi, Donald. How are you?

Don Priess:

I'm pretty good. You know, hanging in there. Yeah, yeah, it's going on?

Susie Singer Carter:

Um, well, usually we do a lot of rambling. But we have so much to talk about today. We have. We have two guests. And we've been not that we don't love us zoom. But we got used to recording our show on Zoom. So we're on Zoom today. So bear with us on our technical difficulties. So Riverside did not work on the phone Riverside, get it together. We love you. But you know, you're trying to have a show here. So a friend of mine, Harry James did a wonderful documentary. It premiered at the awareness festival downtown Don, you came with me and and Harry did a wonderful documentary on her son on the spectrum who is actually a tui, which which translates to two times exceptional, and really gave us an exceptional peek behind the curtain of what it's like to be on the spectrum. Long story short, Harry called me and said, You have to see this short film. Where is Nancy and this wonderful director and yours? I think he's having your show. And then thus, today's show, the subject matters very close to my heart because it is it's based, you know, it's it's talking about, we're the ones that you love, who have Alzheimer's or dementia wander off and which is basically the premise to my mom and the girl. I mean, it was the day in the life of my mom wandering off. And that wasn't the first time. Luckily, we had our Londa, who was there, her her caregiver and followed every step that she made. But she also she also got out in a in an assisted living. And I had got that horrible call one day that was like, Don't Don't, don't be scared. Your mom got out. And this was a locked a locked facility for the memory care unit. I have no idea how she got out. But where there's a will there's a way and they said we found her about three miles away. She's fine. Everything's great. We're doing her hair. She's happy. And I thought, Oh, you Oh, no, she's out there. And I went, and that was the day I took her out of there. I was like, how how are you not watching? I mean, my it was? I was terrified. So the get our first guest is Tiago Didn't I say that? Right. Done?

Don Priess:

You sure did. Excellent.

Susie Singer Carter:

Thank you. My linguistics prowess. He's a wonderful director. We watched his film "Chocolate", his first film, which was a fictional depiction of someone with early onset Alzheimer's, very early onset.

Don Priess:

Yeah, really early.

Susie Singer Carter:

And, and what what can happen when you wander and you're not found, and it's, it's terrifying. It's incredibly terrifying. And I'm sure so many people listening to this, unfortunately, have lived through that. And then out of an extraordinary story, because out of doing this fictional project, it's like, like, like, like the universe does. And I'm gonna let him tell the story, but it it triggered a documentary mirroring the story of his fictional short film. This is just it's just extraordinary how life leads to things and where you're supposed to be. And you're meant to be because this documentary whereas Nancy is just harrowing, and real. And through tragedy comes wonderful gifts which is you know, la found which has a program so we can keep a keep contact of our of our loved ones with Alzheimer's and dementia. So, there's just so much to say about it, but

Don Priess:

So we're gonna meet to where to bring on Tiago first and then later on, we're gonna bring on Kirk moody, who is the husband of the subject of Where's Nancy and he has an amazing story and we catch up with him. So I think it's time we should probably bring on Tiago, and we should stop yapping and let him start yapping.

Susie Singer Carter:

Yeah, get in here and Yap, Tiago.

Don Priess:

Let's welcome Thiago Didalt.

Thiago Didalt:

Hi, guys.

Don Priess:

Hello,

Thiago Didalt:

How are you?

Susie Singer Carter:

We're great. We're so happy to have you here. There was so much to say about you. Because, you know, first of all, we feel very Kismet with you. We both were Oscar qualified in 2018. How crazy is that?

Thiago Didalt:

That's crazy.

Susie Singer Carter:

Yeah, I didn't even know that you were and and that we both did, you know, projects on Alzheimer's. And I remember when we got qualified, you know, it was through it was through shorts, TV, they they found us and said, We want to qualify you because we love this project. And they said, but just just know that, you know, Alzheimer's is not a popular subject. So don't expect to get you know, go further. They were like very, very like blunt about it. And I and I'm so happy to see that you were there to,

Thiago Didalt:

Uh, it was a surprise too, like, I when I did this movie, like, like I say it's a fiction story I wrote, really not basing any buddy else. And I was surprised in many ways. I didn't know much about film festivals, some. At that time, the film went crazy to festivals. And so I was learning how that works. And it was a little surprise there.

Susie Singer Carter:

Yeah, well, I'm not surprised because the your quality and your and your story was was very powerful. And, you know, as you know, like in it, we see very all different levels of of production value and storytelling in the festival circuit. So, you know, and I, and we're, we've you, as you know, right, we see it all and it's you it's it's not easy, you think it's a short, a short film should be easy. It's harder to tell a story. And and, you know, make an impact in a way that that you did. So and, and what's Yeah, no, it's beautifully shot and beautifully acted and directed. My question is, what, what inspired you to write something like this?

Thiago Didalt:

Well, I grew up in Brazil, and we used to see homeless people everywhere. So I always wanted to talk about homelessness in a in a different way. You know, people see like, those people are there because they want to be there or, or because they draw, so stuff like that. So anyways, I always wanted to find a story that bring humanity to then. So anyways, that didn't happen in Brazil. When I first arrived in LA, I was shocked by the number of homeless people. And I was like, I have to tell the story. I don't know how. So anyway, what I started to write it down and trying to find a connection of things. I don't have anyone with Alzheimer's in my family. But I find out about early onset Alzheimer's, there was another thing that blows my mind. And if you look up to the numbers, it's so many people. We like the early onset of Alzheimer's is growing so fast. So I just found that link, you know, to the story that I was trying to tell. And then I was like, Well, if I get to this beautiful woman in her, you know, 40s and trying to have a great life. And suddenly this happened. And I saw an interview online on YouTube with a woman she was 37 If I remember, and she was pregnant. And she was already really advanced on early onset Alzheimer's and her doctor says she will have the baby and she would not remember she was pregnant. So that was really crazy for me. So I wrote this story. I have an amazing executive producer who loved this story and decided to make the film with me. And during that time, we were getting close to shoot but I try a couple organizations to talk about if it that would be a real story kind of like close to reality. Anyways, close to show just got a message from a CEO from organization in LA. She talked to me and she didn't like it this script she was like I don't think this is real. I don't think someone like her gonna walk away. And you know, if it's real, she will be fine in two days. No more than that and stuff like so. It was really not much encouraged to tell that story. But we love this story was a fiction I didn't base the anymore Sorry, right. So we decided to go. And we made the film. And we had a, we were about to have a premiere. We show the movie to the crew. And then the actress who play devil's timer person on chocolate. Yeah, she went to the gym. And she saw a picture of, of Nancy, and she text me and say, Hey, this is this is happening. And she got really involved. Kirk was having meetings, you know, gathering people to search for Nancy. So she joined them really fast. And she got to know Kirk and, and she invited him to come to the screening of Nancy of chocolate each i, I had no idea he would show up. And suddenly wish we we had a premiere of the movie at the landmark theater. And then Kirk and his family came over and they watch it and they love the film, they came off to the q&a and talk about how close his story to play was. And it was insane. It was like, Whoa, how, you know if it was a story that happened a little bit like, you know, in another state or in another city, maybe I would not get to know about it. But it was so close to us, you know, and so close to him. He finished the movie, though. That was weird. We still like me and Kirk, we still don't know much what happened there.

Don Priess:

In "Chocolate", at the end, you have news reports that are reporting on early onset, also since very early in people in their 30s. Because when when I first was watching, and I said wait a minute, this is she's too young, you know, and I had an aunt who got early onset at 50. And but you know, in their 30s. And but it seems as though it's actually you know, this is happening. And when did you at what point did you find those news reports was that during after or before you started shooting,

Thiago Didalt:

Before, when we were prepping to shoot the movie, I was researching a lot and getting all this videos even to help the actress there sit down and she she was researching as well for a character. So she found some stuff should share with me and I found some stuff. And she helped me her because we wanted to see how someone in day age look like you know. So it was more like researching during the process of making.

Don Priess:

Yeah, because it's interesting, because you said you contacted somebody from the and Alzheimer's. And they said, Oh, this is not believable. Right? That's too young. But it's not. It's not you know, it's not common. But

Susie Singer Carter:

is that and you mentioned it was Alzheimer's? Los Angeles? Yes. Yes. Yeah. So we worked very closely with Alzheimer's, Los Angeles as well. And, and I know now that they are supporting you, because I saw it in your film. Yeah. And I love that because you're here you brought you pulled the curtain back on something that, you know, people weren't paying attention to. And even you know, who and I love them so much like they are they they have been so supportive. And I've been very involved with Alzheimer's, Los Angeles. But honestly, when I first was looking, I wasn't going to direct my film because it was too close to me. And when I was looking for a director, initially, people, every director that read the script said, Yeah, but what about the woman, we need to know more about her and I said, but that's not the story. That's not the way it happened. We don't know about her. And that's what's beautiful about it. And, and everybody wanted to change the story we need, like, we want to hear this, we want to see that. And I was like, that's not the story. And I finally realized, I have to, you know, stand by my story. And Paul, I'm gonna either fall or you know, I'm gonna rise next to my story. And I'm glad that I did. And I'm glad that you did.

Thiago Didalt:

I gotta tell you, that's the hard....that was the hard part. Because when you have a big organization that know what they're saying, you know, not that they don't know, they really know. And it was unusual, unusual for than as well. Right? So but but I mean, the fact that me and my team, we just like this, it starts to good. It doesn't matter as a fiction story. Let's go and let's make because when they shut us down, we could be just like, oh, let's not make this movie, you know?

Susie Singer Carter:

Same with me. Exactly. And then you know, and then when you go to the festivals, and people are crying in the audience and hugging you, and you're like, Oh, my God, thank God, I did this, right. People are saying, You told my story. Thank you. That's my grandma. That's my mom. That's my sister. That's true. And you just Yeah, it's like, can't doesn't get better than that. That's true. Well, your

Don Priess:

brings us to telling Yeah. Which brings us to telling the story that your next story which which is the story of Nancy and of Kirk, and I think it now's a good time to maybe introduce Kirk moody, who is the husband of the subject of Where's Nancy? And he has a remarkable story. And I hope everyone gets a chance to see this film because it is. It's it's very, it's so powerful. And it's so important. Yeah, it's so important. So let's bring on Kurt moody. Hello, Kirk. Hello.

Kirk Moody:

Thank you for having me on.

Susie Singer Carter:

Thank you for coming. First, my condolences for the loss of your wife. And I also think You're incredible, and your tenacity and your, the whole family, your whole family was just incredible. And the way they all pulled together, it was just I was in tears, like, through the whole thing is just just beautiful. So thank you for sharing it. I know, it was not easy to share that story. And you did it. And and it's a gift. And to do that, so I'm Yeah, no, thank you. And everybody should watch this documentary. It's so important. You know, and it's funny, because as we were watching it, Don was saying, Well, why don't why isn't there GPS tracking on these, you know, and I said, there is now done there is literally

Don Priess:

in the next three minutes came up the concept of La found which are so important in making happen, you know, it is it is amazing. So going back to when you did when you first met each other? What I mean? How did they How did the idea of the documentary come about?

Kirk Moody:

So I think that when I went to see the filming of chocolate, that was just a month and a half or so after Nancy went missing, so we still had a pretty large group of people out actually on the streets, you know, looking for and interviewing people and, and things like that. And and I'm I'm I was in the publicity mode, right? I'm trying to get as much publicity about Nancy as possible, anything that looked like it might help with that I wasn't willing to do and so the chocolate screening seemed like a good opportunity, etc. And so, sometime later, Tiago just said, you know, this is, as we continue to look for Nancy and not really have any success, he says, Do we gotta I gotta film this story. This is really the story that's going on, I got to make a documentary about this. And, again, I'm looking for validity. So I'm like, Sure, you can follow me around. And we're, we're pretty good friends. And he's a really easy guy to get along with. And he's very, very kind and very helpful. So it wasn't really, you know, much didn't really take much of my time. So it was really helpful for him to do that as well and, and getting more publicity for it was off, you know, obviously a good thing as well.

Susie Singer Carter:

Of course, could you would you mind just giving a brief little summary of of what the the topic of the documentary is in terms of your wife and what happened? Sure.

Kirk Moody:

So we were at a family outing to the Los Angeles County Museum of Art and we're at the end of the day in as people with loved ones with the half of their caregivers of people with Alzheimer's know as you get a little bit more advanced issues with going to the bathroom start to go up and so on. So I'm always trying to offer Nancy opportunities to go to the restroom. So we're about to leave and I said would you like to use the restroom again? She said yes. So we went and usually, you know, the men's room is right next to the women's room. And it turns out they have tried after she went into the ladies room, I looked at the men's room and it's not right there so I wouldn't ask the security guy says well the men's rooms downstairs like random stairs went to the restroom come back up names he wasn't out yet. Now a little unusual because she's pretty fast. And she also you know would typically just wait for me or something like that. So I waited a little bit here and then I walked around thought maybe she came out and walked into one of the galleries or something so I walked around a little bit and certainly not panicked or anything like that just kind of looking forward. When I found my sister again and said you know have you seen Nancy know and I asked them to come you know, go check out the restroom, see if she's still in there and then we start looking a little bit more seriously and security at the museum sees us looking for somebody and they ask him that they get right on it. They're they're looking around for and everything. And we look for quite a while museum I mean, it's Lachlan is a really big museum and it shares grounds with the La Brea tar pits and use a lot of ground to cover and we did that for a while then we finally said we need to call the police we call the police and they came out right away. And they they started a search to and within like about an hour they put a helicopter up to look for we concluded she was normally the museum but we, you wonder you know she hiding someplace to museum we don't know and the museum actually does a sweep at the end of the day. And we were getting towards that so the police kind of wanted to wait for that. And anyway, I went from there but she she you sort of disappeared into thin air. And we had a huge group starting the next day. We I mean, we were up to 25 people by the evening of the next day, and we had 50 people the day after that. And, you know, looking all over for nobody thinks they're gonna find it right away. Where was I going with that? So oh, so somewhat later, you know, we found some videos of local businesses that would be willing to share with their cameras and stuff, which would be, he can't believe how hard that is just like pulling teeth. And large companies won't do it without the police asking for it. And it's just ads, and the police would ask for it. But it just adds time, of course, we probably got a hit after a while and she was walking west on Wilshire Boulevard, people are familiar with Los Angeles. And then we over a period about a week we picked, we've got as many videos as we possibly could. And we got her turning left shortly after that video, and then no more video after that. So that was the last one kind of solver. And then we just kept looking, we started looking in homeless encampments, hospitals, obviously, retirement homes, libraries, parks, we just, you know, just looked and looked and looked and looked and the police agreed with our methodology, we get them in. We took we ranked the probability she did this XY and Z. We did all these things that the police said she you know, she probably is not dead. Because yes, it's really hard to hide as a dead person in Los Angeles, you know, you're gonna be found almost for sure. So right, it may have seemed insane, but we just kept looking looking looking.

Susie Singer Carter:

I found it incredibly disturbing that it was so difficult to to get the get people to cooperate. And and, and it was boggling why all these facilities that had Jane DOE's, didn't, you didn't report these Jane DOE's and take photographs of them? Well,

Don Priess:

that's yeah. And that brings up something that we talked about, and as it ever been discussed, because I know you've been through this, of creating a photo database, flat, basically, if anybody walks into any facility, Fire Department anywhere, and they they're not. So yes, they're Jane Doe. But if you had a photographic database, that literally would with a description of the person, at least, that anyone could go through and say, that's her, you know, or that's him. What, why can't we do

Kirk Moody:

that? Why can't we do that? Alright, so that's a very hard problem. So I've continued working with Valleyfield. And we've worked on a whole bunch of these problems. So on the photo database is getting a whole bunch of entities to work together. And it's, it's a real challenge to keep it updated. So California has a database of missing persons, exactly what you're talking about with photographs, you can go there, right? Now you can go look at all the missing persons in all of California, and do that. Unfortunately, not very many people know about that. So you know, it's not, you go to, if a random person walked into a fire department, they were Jane Doe, that's not the first thing the fire department's gonna think of. Now back to the hospital, we did make some really good progress there. And we got a lot of cooperation of the hospital associated with Southern California. And we, we were able to write we I say, we, that doesn't have nothing to do with me, it has to do with the people, the social workers that really got involved in this. And they wrote up a series of best practices, once you have a Jane Doe, in a real issue in hospitals, your knee jerk reaction to everything is is based around the HIPAA laws, and you can't really see any information about anybody. And they're very worried about that, because you go to prison for that, right. So they're very, very concerned about that. So but there are clear guidelines, when it's when a missing person, or Jane Doe, is very wrote off those guidelines, we've been able to ship those to hospitals, we got a lot of buy in from hospitals, they helped develop it. And I think that we probably have a much better system in place. Now, having said that, you have to train 1000s and 1000s of social workers on this. I'm sure we're not there yet. But at least we have the groundwork in place to be able to do that much better.

Susie Singer Carter:

It's interesting. I mean, I've just I don't know, maybe this is naive. But I mean, when you get arrested you you get your picture taken. Right. And it's Yeah, right

Kirk Moody:

on on fourth, oddly, well, not oddly, if you think about it. So the police do have a pretty sophisticated database system and so on. But it's a criminal database, so the public could have access to that. So if we wanted to piggyback on the police's database, it's only it's only going to be for the police. And there's actually several instances of that where they've written some software to. If a person goes missing, it can get like, right to all the patrol cars right away and stuff like that. So we don't have that in Los Angeles. We're looking at that looking at how to get that in here. Yeah.

Don Priess:

Well, it seems like there's promise it's doable. I think, Tiago when you started when you decide To do this documentary, what was your plan? What was your you had to start somewhere? What what was that?

Thiago Didalt:

So what happened? Actually, chocolate was going pretty well in film festivals. So I put a message about Nancy, at the end of the movie, I was bringing flyers every time we had a screening, clerk will, would show up with the screen it was close by. So we try to keep that going on. Right? i By that time, I had no idea what to do. Because what, what everybody was saying she got to be fine, like they're gonna find her. So that was going on for about almost a year. When, during that time, Kirk and I were talking and he was telling me all this things going on in the system, like, the possibility will happen and where she could be lost in the system and everything. So I talk with my executive producer, Drew Miller, and she was super excited as well to get involved and help. And I just call Kirk and say, hey, I want to tell you a story. It's unbelievable story. And if you can help to bring Nancy you know, that would be amazing. But I had no idea to be honest, I'm not a I don't consider myself a documentary filmmaker. Everything that I did before was commercials was fiction was actors. So I didn't know what to do really, I just had a camera with me. And Kirk would text me and say, Hey, tomorrow I'm going to do this, do you think is something that you want to film and then I would jump in and go and film. In the beginning, we tried to have a chain and like a crew, with a big camera and everything, it didn't work because you know, you have to go inside this places and you don't want people come and say You can film you, you know. So it was challenging to kind of for someone with a background that I had to kind of let everything go to be able to sell a site. Yeah, yeah. Yeah, yeah, those small Right. And, and the freedom was unbelievable, you know, but the story was coming in as we go, like, I have no idea what to expect. How would it be, I try not to write much because things were happening in front of me. So I was really like, it was a huge puzzle to me. Like, I mean, it was a huge puzzle for Kirk to try to find Nancy and was a huge puzzle to me to put this movie together, like how this timeline of events how we're going to, you know, make this visually happen. But and many times I came even to Kirk and to George, it was so hard for me to film then knocking on doors and try and you know, it was so believable what they were doing, and I didn't want them to think that I was you know, exploring their grave or lying. Oh,

Susie Singer Carter:

yeah. Exploiting. Exploiting Yeah, right. Yeah. Yeah. And and what was the time span from when you started to you got the you found Nancy, they were what was that? A minute.

Thiago Didalt:

Let's say I study a one year of her disappearance. And one year later, we've we had the end of the movie. So it was one year shooting, but it was another year of editing. So it was like two and a half years on the making of the movie.

Susie Singer Carter:

Right. Right. So you so you, that's right. So you found she was found a year later when once you started? Yes. Okay, I have questions for Kirk. My mother went through so many different stages, right? And then in my movie, she was at that stage where if you didn't know her, and you didn't talk to her for too long, you might not think she had Alzheimer's. Right? But she certainly would not be good on her alone. There's no way she could have been alone. And if you ask my mother, where did she live? She tell you 60 to 64 Anita Avenue Woodland Hills. Well, she hadn't lived there in eight years. But that's what she would say. And I was thinking in my heart, I was like, Oh, before I knew the end, I was like, when when Nancy's parents were explaining that this is where they had lived since she was born. They've still lived there. I thought well, maybe she's going to remember that address and someone's going to bring her there. And and I'm so I'm wondering what stage in her disease what you know, was she at would she have remembered that? You get where I'm going with.

Kirk Moody:

So one of the particular manifestations alter Nancy was that she was becoming less and less verbal. So yes, she was very unlikely to be able to blurt something Like an address out, not not impossible, but pretty, pretty unlikely. And she would also she wouldn't be able to remember the sequence of the numbers, it wouldn't that wouldn't know. So she was pretty okay. Pretty far advanced. And

Susie Singer Carter:

gotcha, gotcha. Okay, that that answers the question for me because I was thinking, Oh, I wonder why someone didn't say where do you live? And, you know, or, you know,

Don Priess:

because we don't know who she met or didn't meet, right.

Susie Singer Carter:

And obviously, she was nonverbal. That's the chances of her actually connecting with anybody.

Kirk Moody:

Yeah. Right. And so it actually guided our search after a while, right. So we did look at a lot of homeless places, because that seems like a not, you know, somebody could actually help her for a little bit and get her a meal or something like that. But in you know, almost all homeless situations, you know, if you go to a missionary, something that you stay overnight, they kick you out in the morning, and then you have to go find food. And so unless somebody was leading her by the hand every step of the way, she wouldn't possibly be able to do any of those things. So it's simply impossible that you can do that for any period of time more than, you know, just a day or two. And absolutely, we thought about a good Samaritan taking her and stuff, well, I can just tell you as their caregiver, you know, it was a 24 hour job, it just is. It's just beyond your imagination that anybody could be doing something like that. So that's why, in the end, we're really concentrating on care facilities. And there are instances of care facilities, having somebody with the wrong name. Having Sony as a Jane Doe, and not reporting it, because they don't know how to do that. And we, you know, we got these, you know, people would say, Oh, this happened to my mother, and it took me six months to find her because she was under the wrong name or something like that. He's like, Holy Toledo. This really does.

Don Priess:

Yeah, yeah. Wow. And that's why I was talking more about, you know, going back to the photographic thing is these people, you know, may not even know their own name. It's possible. And, and so trying to match it up by names to me is kind of futile. Is you're spot on? It's ridiculous. Yeah, a

Kirk Moody:

place called me a place that I got, actually, Tiago has got it shows up in the film. Don't tell him that. But that's a place that we went. And they called me later on says, Well, we actually do you know, after you came here, we thought about this, you know, we do have a lady we've had for two years. And we really don't know what her real name is. You know, she just showed up. And we've been calling Marie this whole time. What should we do about that? You know, my head explodes call the stinking place, I mean, like,

Don Priess:

But, and this goes back to if, if the, if it was only the facilities and hospitals going back to this photographic database, once it was just them, you could, you could save so many people's just like, you know, the bracelets now save, not 1000s of people. But if you save one person, you know, then and to me as if a facility, which is a licensed facility, isn't able to take a photograph and pop it up onto a database. That doesn't make sense to me. So

Susie Singer Carter:

what were we doing?

Kirk Moody:

There's a lot of work. We're working on that. It's just Yes, it's so much harder than you imagine. It's so much more common. I

Don Priess:

know. I know. It's simple to me,

Kirk Moody:

in retailing, but the concept is trivial. I agree with you. I couldn't agree with you more, but actually doing it is just just it's turning out to be tough.

Susie Singer Carter:

Yeah, it's the bureaucracy and the paper and, you know, just having to get through all those layers. It's so frustrating. It's it's our, our family law system is a pain in the butt that way too. I, you know, I could go on for days talking about how that needs, you know, a complete do over I couldn't help my mom, I'm her conservator person. And yet I have no standing in court.

Kirk Moody:

Yeah. Well, and yes, often talks to this woman who has an autistic son who, who bolted and was in a hospital and she calls the hospital says we can't tell you if he's alive. Or if he's dead, or you can't come see him. You can't do this. You can't do that. And she's she's his mother. That's all right. Horrifying, you know, in of course. Yeah. We could go on forever on this stuff.

Susie Singer Carter:

Just in case the listeners are, aren't aware of the story that I've told before is that my mother was on her way. The facility her facility was taking her for just a regular checkup at the doctor's and she got agitated. And by the time she got to the hospital, she was raving like, I don't know, these people. They're kidnapping me. And instead of looking at her, her records, they just assumed she was crazy. And put her and locked her up in in you know, psychiatry ward for seven days and I didn't even get a call because they get wrapped strap tethered, tethered to a chair and by the time I got the call, because my mother could only read For some reason, my sister in law's number who was divorced from my brother, and they called her and then she never had the wherewithal to call me I finally found her. And you know, I'm also from LA. So she Kaiser had was to fall in their in their ward. So they sent her to someplace in Porter Ranch. And I found her tethered and you know, drugged with Depakote, which is like, heavy duty psychotic labeled drug label drug. And she never walked again after that. And she was like, completely physically healthy. And that was the, you know, seven days it took me to get her out of there. So which is why I'm so I talk about first responders in all facilities, including hospitals, which

Don Priess:

brings up you had a wonderful city council person

Susie Singer Carter:

who, Janet Han.

Don Priess:

Yeah, I mean, from what I could tell just from watching the documentary, this is a person who really cares, and not only cares, but does something about

Kirk Moody:

it. Yeah, she's a very effective person. She's, she's actually on the board of supervisors, LA County. Lee County has been looking at people, which is more than all but something like 10 states. And she heard about Nancy's story and she heard about she asked, What did you call this in this in the county, I said, I called every county office you can imagine, right? And I had to call them all individually, because they there's no way to share information or anything like that. And she's just was very upset that the county didn't have a better coordinated response to that. So she really pushed to get this le found thing going, she's really the champion of that, you know, that still going, and she's still the champion of it. And she deserves all the credit in the world for standing by that. And it's, it's helped, there's 33 People have been recovered. Right? So there's 33 people, something like I did,

Don Priess:

Wow. It's amazing.

Susie Singer Carter:

And you and plus Janet, yes, honestly, people say, Oh,

Don Priess:

it's you know, oh, you know, people at 33 people, what's that, you know, compared to the, you know, millions, one person makes a difference. If one person is found, it's worth it. And, you know, I think that's what happens is so many times people just look at numbers and say that's not a big enough problem. It's not a big enough

Susie Singer Carter:

issue, but also Alzheimer's and dementia isn't it's, it's, it's a marginalized disease until it happens to you. And so, you know, it's, it's one of those diseases that isn't, you know, in a weird way, a sexy disease, and people don't want to look at it. And, and it's misunderstood. It's, it's, it's massively horribly misunderstood. So, that's one of the issues and it's not it's given short shrift, and it's been given short shrift, it doesn't get the the financing the funding that it needs for, for everything, in terms of, you know, drugs, drug testing, and all that stuff. So, you know, they don't get the best of anything yet. And that's why we're all working so hard, in every area and trying to D stigmatize it so that people can understand that, you know, it's, it's a disease that that actually could bankrupt us, you know, in the long run, because more and more people are getting people are living longer. And it's something we might, almost everybody's gonna face at some point, just just will do. So and especially

Don Priess:

with early onset, because early onset, you know, it's not like, you know, yeah, somebody might get dementia in their mid 70s, late 70s. But when you get in your 50s you can live another 3040 years with it. That is, I mean, my aunt had early onset at the age of 50. And she was literally a vegetable for 20 years laying in a bed. You know, it's it's, it's not something that you know, you get a disease and it's over in a year or two it's it's something that it's a and it and it affects not obviously the person but everyone in their lives as you well know. You know, I'm certainly preaching to the choir. Yeah.

Thiago Didalt:

Yeah, one thing that I learned with the early on setup was I was as young as you get it. Fast as it goes. Yeah. Like if you get on the 7080 You You still can go a long way. But if you got younger, the disease really go really

Susie Singer Carter:

fast as quickly. Yeah. Progress. Yeah. Does. And when we we had a my mom made very close friends in one of the facilities with a football player name. Very big deal. Yeah, yeah. Fred McNeil, who was 62 and had early onset from football playing, and, oh, he was he passed away in a year. And it was unbelievable. This handsome strapping amazing man who fell in love with my mom too. Two years older than her, him, and it was like this beautiful friendship based on music. And, you know, just like that just progressed so quickly and it's heartbreaking. Yeah. Yeah. And also for people that get it older, like my mom got it in her, I think in her late 60s, because we don't we don't know for sure. But I saw the signs. And then early, early 70s, she was diagnosed. And I call it the longest disease. It's the longest exit ever, because we're now going on our 16th year. And I'm, I lose her every day, every day. I you know, it's a new loss so hard, really hard.

Don Priess:

Kirk, had you ever had you seen any signs of wandering at any time prior to this?

Kirk Moody:

I'm sort of, but the key was, and one of the things that is important to stress to people that are caregiving is you don't think of it in terms of wandering. So she was very attached to me. So when she was away from me, then she might bolt from wherever she was to go get back to me or get back home. And she was not likely to leave the home. If she was she wasn't going to leave the home and wasn't with me, that's just so you really don't think of it in terms of wandering. So it's, it's a little bit better to put it in terms of getting lost, it's much easier to imagine, if you're a caregiver, that your loved one is going to get lost. Or just, if you're just out of sight for a minute they can, they can go the other direction and you don't know that and you come back in their garden type of thing. This is sort of what what happened me. So I was conscious enough to have the the threat of that, that I did get into that MedicAlert bracelet, which is a dumb bracelet. And if somebody finds her, hopefully they'll actually look at the bracelet and they call the number on it and stuff like that. But not everybody knows about those bracelets, I did hear one horror story about some guy who finally found his mother and went and picked up her stuff. And you know, when picked her up and then looked in the hospital drawer where their personal effects were next to her including the bracelet that they had taken off of there. Right. So that's got to be a crazy case, right? That's just really unusual. But so in answer your question, short answer is yes, I had thought about that. But I really didn't think of it in terms of wandering, I thought in terms of she might get lost or something like that.

Don Priess:

It's good to I mean, this is you know, for people who are, you know, it's always new for everybody when they're the caregiver of somebody you know, and so any signs, any information that we hear that can you know, help, you know, see if you know, you don't even know if it's a sign because you how do you recognize it you don't you've never gone through it before. So that's why putting out your story is so important and and so generous of you and and we can't thank you more for that because this is how this is the only way we learn is through other people's experience. It is

Kirk Moody:

yeah, I've ended um I've used it I you know, there's this afternoon I'm going to fly to Sacramento because the California missing you know if a person's department gives a training course on missing unidentified people they actually I give a module on that on what my experience is Nancy like this goes to law enforcement so on So these people are getting trained, they're getting better about finding out about these things, but it's uh, as you can you know, there's new police all the time and they all have to be trained it so it takes a long time.

Susie Singer Carter:

Yeah, and your your, your process was really detailed and intense. They, you know, what you had done and what you put in place for your search was was extraordinary. And

Kirk Moody:

I'm very privileged to have the resources and the friends and the time to be able to vote that and you know, very few people can do that type of thing. And even when they have the wherewithal they were essentially unsuccessful. Right we you know, everything we did didn't didn't work basically so

Susie Singer Carter:

right. Getting to the day that you they found her remains and you know, I I lived in Sherman Oaks for 14 years on Valley Vista, you know where that is. Yeah. And I'm very familiar with that area. And I find it extraordinary that that they that she had gone from LACMA to Sherman Oaks and, and the very little entryways that she could have gotten there and it it must be something that haunts you to think of how since there's no answers to how she got there.

Kirk Moody:

Yeah, so oddly, I don't dwell on it very much because turns out that there's no good answer there. So

Don Priess:

doesn't it doesn't make a difference. Yeah.

Kirk Moody:

You know, in that so it bugs her dad a little bit more, but I think he's kind of let that rest as well, but it's just like Were there's no I can't imagine how we would ever find out more information about it. So that's just,

Don Priess:

it is what it is. It's the way you and her would they you and her parents have handled this, you know, with such grace and such, because some people would would just want to hide and not you know, and just disappear from it and, but you you've thought of others and and all of you have just by agreeing to participate in this film. And so for that, you know, you should be I mean, you should be commended because it's not easy. I mean, I can't even imagine I didn't

Susie Singer Carter:

want to do my story I didn't.

Kirk Moody:

Unwilling participant you don't want to see yourself on the channel to newscast crying in front of the camera. But if it gets people to look for your wife, then you that's what you do, right. So, yeah.

Don Priess:

And Tiago, you handled it also with you know, you just with such a beautiful hand the way you you dealt with it and way you dealt with them because, you know, you can document it can be very intrusive. I mean, these are people who are you know, in in this crisis and the way you dealt with it was just beautiful. Thank

Thiago Didalt:

you. Yeah, it was hard. It wasn't easy for both of us I mean, for them to have a camera in their face is probably was awful. For me to feel that that I had a camera interfaces was awful, too, but they always remind me the importance of show this story and help to find her or even help to find somebody else, you know, because we never know who's gonna watch and it's gonna it's gonna help to other counties to have the bracelets you know, yes, I can say it's not millions of people being found but this is the the small person that can get to the meetings you know?

Susie Singer Carter:

Absolutely. No, I I am so admire both of you. I'm like my heart is bursting for both of you are just extraordinary. And I am not say that in a flippant way at all because it's so it just touches me deeply. And I really don't have I don't know what else to say about this. I just think that everybody needs to go see go see the watch both these films because you really need to see the juxtaposition of chocolate being a fictional story and then then then segwayed into this, you know, non fictional true life story that that is tragic. And, and, and yet, such a gift, in many ways to all of us a huge gift for us and generations to come.

Thiago Didalt:

People usually ask, like to ask me, like, how do you vision about making this film and the end of the film? We have no idea in my mind, we will find her and film? Or would it be an open end? You know, you'll be like, we still looking for Nancy, if you have information and everything. So when core call me it was close to Christmas record. Yeah. Do you have for Christmas? Yeah. And it was just like, Oh, my God, like, I don't even knew how to finish the movie. It was so heartbreaking. And but again, they're amazing. And let me film and do everything after and I mean, this movie only has happened because they're so open, you know, as if you're a filmmaker, you have to have that type of people. They allow you to, to be close enough to show those parts that maybe nobody want to show you know.

Susie Singer Carter:

Absolutely, yeah. I totally get that and I you know what, let me take that I have one other question for Kirk is that that the investigator when he was going through you know, the the map from LACMA to Sherman Oaks and trying to do hypothesize what may have happened and talking about Alzheimer's patients that generally go straight and then right straight and then right. And and then you said, when Nancy, you on the on the cameras that you know, on the street cameras, you saw her go down? Well, sure, and then make a left.

Kirk Moody:

So yeah, so that's a friend of mine who just really looked into this quite a bit, Matthew that talks about what you know, sort of general rules that people will follow. And another one was that they typically det go downhill. So if you don't know, these are just very, very general types of things in names. He was, she was young, she was very healthy, very good Walker. So she's going uphill would not bother her at all. In fact, that might even be something she would want to do, you know. And he, you know, he maps out a path that she could take, which it looks funny, but if you kind of just follow along these roads, it's not that funny. It's something that she really could have done and ended up there. And I and I think in the Don's point when he says Are we you know, curious about it? Sure, but I think I've kind of choose to believe that's what happened that she walked up there maybe that very night and, and that's where she was. And it's a very common thing with Alzheimer's patients, when they do wander, what happens is they get into a situation where they feel trapped, or they're, they're in a dead end, in any normal person would know, to just turn around and walk back out or back out or something like that. And they're, they're not they can't process that. And they end up in a bad situation. And that's, that's very, very common for wandering and Alzheimer's. And I think that's something that may have may well have happened to her.

Susie Singer Carter:

Interested Yeah, I was because I had not heard that about that, you know, the, the consistencies of that. So that I found that interesting as well. You know, I, I didn't map out when my mom got out of the facility in Burbank, but I remember them saying they found her three miles away. I thought that's far my mom was really healthy and walked like, like Nancy, very, extremely, you know, athletic, and I, I, it didn't, but in the short time that she was supposedly gone, she went three miles. That's, you know, yeah. So

Don Priess:

when she got in the film, when you know, which depicts, which was we actually shot that in the home she was at when she got out. She did she went right and then right.

Susie Singer Carter:

Yeah, we were trying to go back and what was it right and right, because there Londa, her caregiver had it all mapped out, you know, so but we did take her we fictionalized a little bit where she was so we could shoot, you know? Yeah. But anyway, it's interesting. Yeah, it is interesting.

Don Priess:

I want to ask Kirk, like, how can people get involved? What can they do with what you're doing? What what's the best way

Kirk Moody:

to support their caregiver and they're in Los Angeles, they really ought to look into LA found for their loved one, that's this is a set of resources that it's not just getting a bracelet, which they can get, which is very important, but it's other. There's tips on there from Alzheimer's, Los Angeles, about how to keep them in home, so they don't wander in the first place. So it's very valuable resources there. They can support the Alzheimer's, both the association and Alzheimer's Los Angeles. Great. I'm a board member now of Alzheimer's, Los Angeles. It's a great organization.

Susie Singer Carter:

I love it. I'm wonderful. I love Heather Cooper shout out to Heather Cooper's

Kirk Moody:

I think that woman could run the wall. Vote for

Susie Singer Carter:

she, I'd vote for her too. I love them very much.

Kirk Moody:

So um, and just awareness of it, you know, even if you're not a caregiver, just awareness of the issue. And being a good listener, two people that are having an issue and say, oh, you know, I've heard of this la found program or I've heard of Alzheimer's loss, and it's just something like that and giving people that resource and those that's, I think that's really a good way to go forward.

Susie Singer Carter:

Absolutely, we're gonna do put put all that information and all of those links in the show notes, you will have every link la for Alzheimer's, Los Angeles, la found

Don Priess:

links to the film, absolutely

Susie Singer Carter:

support support these people support yourselves by by getting involved and really, you know, helping to, to, to spread this message which is so important. And,

Don Priess:

and Thiago, what do you have going on right now, I know you've got a lot of projects going and I'm sure you working on this is probably colored how you work on these projects now or what you're working on.

Thiago Didalt:

Actually, we had a beautiful premiere of where is Nancy or the the Cinequest Film Festival at the Silicon Valley. And we had this screening on Sunday March. I forgot the date, but it was a day before they shut down their entire country for the pandemic. So it was really awful for the movie. I mean, all the filmmakers were all struggling with this pandemic thing. But during the process of making NCI I met someone who knew a woman who has two autistic sons unbelievable stories. So during the pandemic, I start filming her story so that's what I'm finishing right now. I did a I have a script of chocolate as a feature film that I really want to make one day and but and we are also trying to have to find a the best streaming platform for Where's Nancy I hope we're gonna know that soon and spread the word about her story and hopefully help others who wonder and you know, make sure la found his copy everywhere.

Susie Singer Carter:

Yep, love it. Love it. Love it and love you Thank you for being such a responsible caregiver and a passionate I mean filmmaker and and caregiver, but that's because you're healthy and you're helping in a in an adjacent way. I appreciate so thank you. Thank you. It's it's really rare in our in our industry. You know, I'm sure you you came up with we did chocolate, I'm sure you got a lot of you know people say Ah, Alzheimer's.

Thiago Didalt:

Yeah, yeah, it was like when the pandemic came and yeah, try trying to sell the movie and people like, oh my god, we're going to the pandemic, you want me to watch a movie about Alzheimer's? Like,

Susie Singer Carter:

yeah, that's how we got we do. We called ours a joyous look at Alzheimer's because I wanted people to lean into it. Like I had to learn to lean into it and find the gifts you know, and even like you like you, Kirk, you found a gift in it, because you now are giving it to everybody. And, and that's that's that is the beauty of of of tragedies is that we can pay it forward. That's why I'm here paying this forward. I appreciate I appreciate LA, Alzheimer's, Los Angeles for being so supportive to me and us against Alzheimer's in Washington, who was our fiscal sponsor, all these amazing organizations and the Jewish home in Los Angeles that's supported my mom and will continue for the rest of her life. And we need more, we need more compassionate organizations. So we I have loads of love and respect....

Thiago Didalt:

Yeah, we're not going to stop Alzheimer. But we can make people understand what's going on and stop the wonders stop situations like Kirk went through, you know, and that's my whole

Susie Singer Carter:

Yeah. Educating and demystifying and D stigmatizing. And wow, thank you. Is there anything we left out that you'd like to talk about? If not, I just want to say thank you. No, thank

Kirk Moody:

you very much for having us on again.

Don Priess:

Absolutely.

Susie Singer Carter:

It's a pleasure. And we will we again, thank you so so much, Kirk. You're amazing. You're just an incredible human being. I just, I don't know you, but I feel like I know you and I like you so much. So thank you.

Kirk Moody:

Thank you. That's so kind of you.

Susie Singer Carter:

Yeah, I do. I do. You're just you just have a heart that is huge. And, and you're brilliant on top of it. So bless your heart. And you too. You too, Tiago. You're okay, Don,

Don Priess:

I'm fine. I'm okay.

Susie Singer Carter:

You're Alright in my book. (Laugh), What do we always say, Don?

Don Priess:

Yeah, well, I mean, this whole, everything in the long run. All of this has come from love. And that's really what all of this is about. Because as we always say, Love is powerful. Love is contagious, and Love Conquers Alz. And we'll see you next time.

Susie Singer Carter:

See you next time.