MARIA KENT BEERS: Remember Me Podcast + Community for Frontotemporal Dementias - Accept the Good

In episode 78, Don and I had a fantastic conversation with the warm-hearted and incredibly delightful, Maria Kent Beers.  Maria, along with her partner, Rachael Martinez, is the co-founder and co-host of the Remember Me Podcast + Community. Maria has always had a love of radio and editing, receiving a TV Production Degree from Boston University where she was a host of BU In The Morning Radio Show. She also spent time at MTV Radio as an intern in NYC before falling into the world of fashion merchandising for 7 years. After losing her beloved mother, Amalia  to FTD in 2020, Maria had a desire to share her mom and experience as a caregiver to the world and the seed for the Remember Me Podcast + Community was planted. Since its inception, the Remember Me Podcast has tripled its audience as the awareness for brain health, Alzheimer’s and FTD continues to grow. Maria has served as a guest speaker at Alzheimer’s and caregiving conferences around the world and continues to be a resource for others on the FTD journey. Remember Me Podcast + Community has collaborated with partners such as Learn FTD, The Association for Frontotemporal Degeneration (The AFTD) and  the Bluefield Project to share their stories and offer support to the FTD community. You can follow along at @remembermepodcast and listen on your favorite podcast platform.
World FTD Awareness Week Sept 24 - Oct 8, 2023. Remember Me is going on a 3-city tour (NYC, Philly, DC) to raise awareness of FTD  Sept 25 - 28th. - please see their tour page here.  

Transcript

Susie Singer Carter: 0:00

Hi, everybody, it's Susie singer Carter. And I just wanted to let you know that we have a GoFundMe campaign for our documentary, no country, for old people have been asking for a lot of money from people. But we really are at the point where we just need the finishing funds. And this project is so important. So I just wanted to let you know that we have a GoFundMe, and we're still connected to the national consumer voice for quality long term care. So all of your donations are completely 100% tax deductible. And you can go to the link here or there or there. So thank you. And also thank you for sharing it with your network. We appreciate it. It's for our most vulnerable and giving them a voice and to stop the suffering. So thank you when the world has gotcha down, and Alzheimer's

Don Priess: 0:57

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 all 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 priests

Susie Singer Carter: 1:33

Hello, I'm Susie singer Carter.

Don Priess: 1:35

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

Susie Singer Carter: 1:40

Hi, Donald. How you doing?

Don Priess: 1:43

Well, as you can tell, I sound a little different today just slightly.

Susie Singer Carter: 1:48

My God. I hope everybody's doing well. I hope everyone's doing well. Don and I got struck we got sidestroke we got sucker punched by the norovirus.

Don Priess: 1:58

Norovirus. Yeah, that's why my voice is down here because of well, let's call it the the Technicolor yawn are screaming into the porcelain microphone. Let's say my voice is virtually gone. Sorry for that free visual, but yeah. I know. Sorry.

Susie Singer Carter: 2:18

I'll just say that it was I felt like I was reenacting bridesmaids. That's all I'll just tell you right now.

Don Priess: 2:25

Oh, my.

Susie Singer Carter: 2:27

Oh my god. That's all I gotta tell you because Oh, my God, you guys, the Norovirus is brutal. It's no joke. And I got it the day after my birthday after my little ones came and visited me and brought me presents and left me with a bonus present of the nose. Happy

Don Priess: 2:44

birthday.

Susie Singer Carter: 2:45

Thank you. Thank you so much. Yeah, yeah. Anyway, anywho we're over. It's sort of it's been. It's been a it's been a couple, like five days of yuck. of good time. Five days of real yuck. But then, yeah, three more days. Don't

Don Priess: 3:03

feel great after Yeah. You don't feel so don't get it. What we're saying.

Susie Singer Carter: 3:07

Don't get it. It's very contagious. Do not get wash hands, wash hands. And be careful of little ones because it's it comes from daycares and preschools. Alright, anyway, so don, let's see. And go and see, I'm speaking on the lanell. Because like I said, let's change such because

Don Priess: 3:33

it's a thing. It is.

Susie Singer Carter: 3:36

Yeah, you just you don't you're you know, Papu which is grandpa, pop, who is grandpa in Greek. And I said that because appropriately, our our guests who's coming

Unknown: 3:49

up is Greek. That's fantastic.

Susie Singer Carter: 3:53

See how I did that and play that all together? So yeah, because she's wonderful. And Rachel Yeah, well,

Don Priess: 3:59

should I tell everyone about her? Should

Susie Singer Carter: 4:03

in Yeah, I guess. Go why not jump on in.

Don Priess: 4:08

Maria can't beers is the co founder and co host of the remember me podcast plus community. Maria's desire to share her mother's story and her experience as a caregiver led to the creation of her podcast that explores the world of brain health, Alzheimer's, and Frontotemporal dementia or FTD. Along with her co host, Rachel Martinez, Maria has become an important resource supporting a community of families and caregivers who are navigating this devastating and often misunderstood disease. She has served as a guest speaker at Alzheimer's and caregiving conferences around the world and continues to be a beacon of knowledge and guidance for others on the FTD journey. And with that, let's welcome Maria can't beers. Hello, Maria.

Unknown: 4:54

How are you? Thank you so much for having me today.

Susie Singer Carter: 4:58

Hi, Maria. It's so nice to meet you. Oh, adorable. Yeah. If you're not watching you should because she's very sweet and like sunshine. Sunshine and by saying something. Yeah. You bring the sunshine to Boston. That's good. It's good. So we're really happy to have you here. And and, you know, it's interesting because your story? Well, like most of our stories as caregivers are, it's very similar to mine in even timewise almost, you know, as far as caring for our mothers and with, you know, different diseases, but yet very similar. Yours, your mom with Frontotemporal dementia, my mom with Alzheimer's, and you, you lost your mom and 2020 Right. 2020 and 2020 I just lost my mom and July 22 last year. So Lisa journey, it's a journey. Right. Thank you. And so and you started a podcast in 2020. As did we, which is amazing. Yeah. And I love I love that you took your, you know, your experience and made it into a positive and made it into a giving, you know, forward. And that's felt like

Unknown: 6:30

I had to Yeah, what else can you do?

Susie Singer Carter: 6:34

It's that it's the best thing. It's either that or you just go I'm done. And you walk away. And then what good is that? What would have Yeah,

Don Priess: 6:44

what and then you kind of live in that you can live in that grief? You know, because you don't you don't talk about it. You kind of just bury it and that's not good.

Unknown: 6:52

Absolutely. I feel like there's two paths. And I decided to channel some creativity and healing into this project and it's really helped me and others beautiful God.

Susie Singer Carter: 7:06

Say your mother your mother is Malia? Is that how I pronounce her name?

Unknown: 7:11

It's um, Alia. But don't worry. Nobody ever knows, ever knows how to say it. It's a very Greek Old School traditional Greek name. And my mom actually always used to tell me don't ever name any of your kids. I'm Alia because nobody can say

Susie Singer Carter: 7:28

and I proved positive. There you go. It's magic. I'm Alia is much better. God bless your mom if she's listening. I'm Alia is beautiful. I just bastardized it. That's all. Well, I do know how to say grandma in Greek. Yeah, yeah. Oh, yeah.

Unknown: 7:44

Yeah. You got it. Yeah. I just lost my actually couple months ago. But she was 94 and a whippersnapper. So yeah, I

Susie Singer Carter: 7:54

love it. I love it. My friends are Greek and I so I love her. His my friend's parents. All the kids call them yo, yo, on popu. Yeah, right. Yeah, love it, too. I love it too. Well, tell us about just tell me a little bit about or a lot. Whatever you want to share with us you know about your journey because you're young, and your mom was young. And just give us a you know, how did this all start for you, you your art, your bio, it talks about you loving to create and be creative and edit. And so where were you when when your mom was diagnosed with with FTD

Unknown: 8:40

it feels like a million years ago, but it wasn't that long ago. I had just gotten married. It was 2015 and I was just kind of in that fun like living we were living in Boston down in the city and just you know that newlywed life and newlywed bliss. And we are all scratching our heads me and my siblings. My husband, my dad, like something's not quite right with my mom. She was the glue of our family. She was bubbly. You were saying your mom was funny. My mom was so funny. And just such a light and she was becoming very withdrawn. And alarmingly was like losing her words. She was replacing words with the wrong word. She called everything thing. And she was 52 years old. So we're like, what? What's happening? So my youngest sister who's 10 years younger than me was going off to college. And you know, my mom had three or four kids and she she was a stay at home mom for 30 years. So we're like, maybe she's having a hard time letting the kids You know, all move on and she's gonna be an empty nester. Like we just kept trying to explain it away. We thought, you know, I know this is so common, you know, is she depressed, like all the things you go through to see what's happening to my person. And the language really tipped doctors off. They're like, something's really not right here. And we have the privilege of living in Boston, which is a major medical community. And pretty quickly, we got the diagnosis of Frontotemporal dementia, which we had no idea what that was. I mean, I knew I had this feeling that whatever my mom had, it wasn't gonna get better. But I just I, I never thought dementia, I didn't know. You could get dementia at age 50. I just, yeah, it was just like, it was like, one day, my life was one way. And then like, the next day, my world was like, completely upside down. Like, what does this mean? And it was such a whirlwind of like, okay, like, what does this mean for our family? What's a life? Like, what it even is this? Never heard of this before? And so, yeah, I could go on and on and on. So please interrupt me if you know,

Susie Singer Carter: 11:29

I'm, it's really interesting for me, because yeah, I think most of us, especially if we're close knit family, and you know, like, I know, my mom's so well, and I started seeing the signs way early in my mom when she was like, in her late 60s. And then all my family kept, you know, going, dismissing it, you know, it's everyone forgets, everyone gets confused, edited, but I saw changes in her personality. And she was getting frustrated. And I could see that and, and like, you know, in the film that we made, we do a scene about my mom, we do. There's a scene where she gets very indignant about it and you know, out just, just outrageous sense, like, I'm not sick, you're sick. You know, I'm fine. You know, there's a denial about it. And rightly so because it's frightening. Right. So and, you know, we get frightened, I get frightened if I forget a word. I'm like, Oh, yeah. Right. And happening

Unknown: 12:27

to me now. Yes. About that so much. In our little podcast. FTD community is like, Oh, no. Is it coming for me too? It's just Yeah, it's scary. It's a world I never thought I'd be entered into, especially at this age. It just, yeah. Was honestly. So traumatic. Like,

Susie Singer Carter: 12:50

do you mind me asking your age and you don't have to tell me if you don't want to?

Unknown: 12:54

You can ask me anything. I'm like, wow, old am. I am 3535. And

Susie Singer Carter: 13:01

there you are in the middle. You are the epitome of I don't know if you have children. But I do now you do now. So you are you know, you're exactly the definition of a sandwich generation. I was on the tail end of that with my daughter. I have two daughters. But my one daughter was in college in my other one was 16 when I had my mom move in with me. So it was like, you know, Anna was going through a divorce. So it was like, Oh, my God, I'm in the middle of my life. And it's like, how is this happening? And I like you knew nothing about any kind of dementia at all. I mean, as far as I was, as I was as dumb as it gets, I was like, oh, senility. That's what I thought dementia was right. I didn't know anything. I didn't know the nuances. I didn't know anything about and

Unknown: 13:51

how would you? Nobody talks about? You wants to

Don Priess: 13:55

know what he wants to do. Yeah. Why would you?

Susie Singer Carter: 13:59

How you do and I found this really great top over at three people and housebound dementia.

Unknown: 14:09

I love that, I need that.

Don Priess: 14:12

But it's it's quite, it's different in many ways than Alzheimer's. There are some similarities, I guess. Yeah. Is memory part of the symptoms, the loss of memory? Or is it more the language skills and it manifests in other ways?

Unknown: 14:25

So typically, memory is not impacted sometimes in the late stages it is. But your frontal lobe primarily deals with language, personality judgment, depending we've we've interviewed a lot of like doctors now and ask them these questions. Like, why is it that some people present is like having odd behaviors and some people like my mom presented with language problems and they say that like, depending on which part of your frontal lobe is impacted is kind of where the symptoms will start. And then a lot of times they just Fred and you kind of get the whole gamut. We also have a lot of people in our community who donate their loved ones brain. And a lot of times they see Alzheimer's webs. Sometimes in people that live with a disease for a long time, but no, typically the memory is not impacted. So it's a little bit of a different beast.

Susie Singer Carter: 15:25

Can you explain like, what exactly causes it if they know? Or were how to how is it discovered? Because how is it diagnosed? And I'm going to say this, because when I recently I suffer from migraines, and I have, and I'm starting to in, I've got tinnitus as well, all of a sudden out of nowhere, which is like this ringing in your ear. And so I've never had an MRI in my brain, but I did. And I was really afraid because my mom had Alzheimer's, and I thought, Oh, my God, they're gonna find something weird in me and did it into that. And my doctor was saying, well, let's just make sure that you don't have any like, like, what is it? Like your arteries or your small your smaller artists? What could have been like, in the worst case scenario could be like, the temporal just dementia, because it's it had affects your arteries. And anyway, I'm fine. There was like, like, nothing remarkable. My brain is fine. Thank God. But But I really got I started reading into it and thinking, wow, you know, it, you can, there's so many things that can create that, like my ex husband had a frontal brain injury, he fell off a double decker bus in Britain. And I know that he manifested a lot of the same issues that people with FTD have, you know, in terms of personality in terms of he could his language, he had a lot of difficulty, you know, he couldn't let him you couldn't interrupt him speaking or he'd lose his train because he loses words, and things like that. So

Unknown: 17:07

yeah, to answer your question about what causes it. So there is a small, I don't know how to quantify it, because that's statistics change all the time. But there is a population of people living with this disease that habit genetically inherited. The FTD, you know, scientists and experts have identified, I believe it's four genetic mutations now. So there is definitely a genetic component to this disease. But that's not the majority of cases. The majority of cases is what they call multifactorial, and they don't really know yet, it could be a variety of factors. You know, we did do genetic testing for my mom, and we talk a lot about this stuff on our podcast, just to try and destigmatize it a little bit. We did genetic testing. And my mom did not have like a known genetic cause. So we don't know. We don't know why this

Susie Singer Carter: 18:18

isn't high blood. I mean, is it high blood pressure? Is it diet? Is it is it like their cholesterol? They don't know.

Unknown: 18:28

They don't know. I mean, there is a lot of I'm sure you guys see, like all this information coming out about you know, diet and brain health. And, and certainly they're saying, you know, those things are important for, you know, if you don't have a known genetic cause for helping prevent, you know, types of dementia, but no, they don't know. And so, a lot of what our podcast is, is really trying to, like get the word out that this even exists. So we can get people into research, we can get testing, we can get doctors studying it. But the good news is, is that the doctors that are focused on FTD are making such incredible strides right now that the government keeps funding FTD research. So you know, and especially with Bruce Willis, his diagnosis coming out this year, you know, I think there Yeah, it does. It does. And so, yeah, we don't know and, you know, even when they, you know, have people give the incredible donation of of their loved one's brain or donate their time to science. A lot of the data they're collecting, they don't know what it means yet. So that's kind of part of our fight is like, how do we how do we figure out what's going on here and how do we stop it?

Susie Singer Carter: 19:51

Okay, um, can I ask you this and you can I mean, clearly yours telling me that there's they don't ask me

Unknown: 19:58

anything, anything.

Susie Singer Carter: 20:00

Thank you. Because they can see, for instance, in Alzheimer's, they can't really diagnose it until someone's passed away. So and that's, that's that's the, that's the dilemma there. But with FTD, they can diagnose it and what if that's true? What do they what are they looking for? What do they see besides the manifestations physically?

Unknown: 20:25

So they can't, I'll say, they can't 100% diagnose FTD until the autopsy, except if you have one of these known genetic mutations, which they can test for, through blood test, or through and through like a spinal tap, and through, I think, like, you can even do those like swab kits now. So there, if you have a mutation, you can confirm that in which, with each mutation, you know, what the percentage chances that you will develop the disease in your lifetime. But no, it's similar to Alzheimer's in that you can't really diagnose until autopsy. But some of the things that a doctor would look for, to help them make the diagnosis would be I mean, there's not a lot seen on a on a scan on an MRI. But you will see some atrophy in the frontal lobe, like, you know how your brain tissue is like really tight together when you're super healthy, and then it starts to have like pockets. I think that's one thing. But when my mom went for her MRI, the only reason they could see or maybe it's a PET scan, don't quote me, I'm not a doctor. But when they looked at her scans, the only way they saw the atrophy was really because my mom had had a scan, like many, many years ago for something that they're seeing is unrelated. And they could see that change. But it wasn't like a remarkable difference on the scan. So what they're looking for is someone, like, a typical story we hear on our podcast is someone under the age of 60, who, you know, typically has a high level of education, but they're no longer able to form their words, or they're having drastic changes in their personality and their judgment. It's really like they're not behaving the way they did before. And so a lot of times, that's why people many times end up at psychiatrists, therapists, you know, some sort of a psychiatric doctor, because a lot of the initial signs are like, apathy. You know, like, my mom used to text me 100 times a day. And then I was like, Ma, you can text me. So it's subtle changes. But when you bring them to the doctor, and you're like, you know, they're a professor, and they're no longer grading their papers or showing up on time, and they're not able to teach the curriculum, they taught for 30 years, you know, you really have to be a detective for this disease, you really have to list it all out.

Don Priess: 23:24

And are they? Are they aware of it? Yeah. Are they aware of it at the time? I mean, I'm sure there's, they're aware of it. But like with Alzheimer's, you know, there's a memory thing. So they they do or say something and then they have no clue they did or said what they did. It's got to be very different with this. Yeah, there is no memory issue.

Unknown: 23:41

Some people are but then there's also this thing called and I always butcher it, it's like anus, and a StuG. Nausea. And that is something that many people with FTD have, where they have no awareness that there's anything wrong with them. In my mom's case, I think she knew and how terrifying right to be like, yes, something's wrong, and I can't even communicate that it's wrong. We did find journals that my mom had been writing in, long before her diagnosis writing, like, something's not right. Research this research that it's, that's it's a really heartbreaking part of it. You know, it's like, they're just trapped in this horrible situation, you know, and they are changing.

Susie Singer Carter: 24:37

I feel the same way I used to. I feel that feeling that you just said so deeply because I also found a scent journals of my mom's in her when her 60s And she was like, I need to write this fast because I'll forget Oh, my memory is getting so bad just thinking she was aging. Right. And as So when she, the day well, the year that she lived with me was her hardest year because she was aware. And so she was fighting it. And I, I was almost relieved as it progressed because I say, I crossed her over the bridge and she into acceptance. And then she was at peace with it. You know it Be careful

Unknown: 25:27

that you helped her.

Don Priess: 25:31

I still did that ever happened with your mother? The Way We Were there ever a point where? I mean, could you talk to her about it? Or was it just kind of like, there's really we can't discuss this and it is what it is.

Unknown: 25:43

It really was like, it felt like, as soon as we had a confirmed diagnosis, like she couldn't communicate anymore. Like it was so fast. And she was diagnosed in the fall of 2016. Or sorry, yeah, the fall of 2016. And then by the time the following fall, I was pregnant with my son, Liam with my first child. And when I went and told her she she couldn't even say congratulation like she couldn't. She would you know what she said? She said, Wegmans because she loved going to Wegmans. And she always wanted us to take her to Wegmans. And she would for separate on those few words she had left. And so I was like, Mom, like I'm pregnant. And she was like, Wait a minute. And I'm like, this is not the moment I always were looking for, dreamed of. And by the time my son was born nine months later, I mean, she, she could hardly speak at all. Yeah. So we never got to have those conversations. And I do remember when she was first diagnosed. Just to add more to the terribleness, my mom had the dual diagnosis of FTD and ALS. So which is common? In FTD? Yeah, so I remember she was aware enough, when the doctors were telling her you also have a lapse. And I remember her saying to me, I'm gonna live a long time, my I can walk really well. My legs are strong, my arms are strong. And she was spending so much of her time just reassuring us kids, I'm fine. Like, I am going to be okay. When we all knew that wasn't, you know, that wasn't the case. But she was just such a mom. Like, she didn't want anyone to worry, you know, but Right. Right. It was such a crazy time. Yeah.

Don Priess: 27:50

She ended up passing it a very young age with Alzheimer's that eventually just you know, it just deteriorate. Everything deteriorates physically. And is that the same with with FTD?

Unknown: 28:00

I feel like this is my answer for a lot of things. It depends. There's so many different presentations. So my co host Rachel, her dad lived with the disease for 12 years. And it was a very slow progression. And in the end, he and we talked about all this other podcasts were open books. In the end, he, you know, was wheelchair bound, and he started having some issues swallowing and ultimately he had aspirated and that was kind of his decline. Whereas my mom was, you know, diagnosed to passing was four years, and she had the ALS component, and ultimately, the ALS really took over. She struggled to breathe to walk to like where our muscles just gave out. And that is common in FTD patients that that can happen. But there are some people who live with the disease for 20 years, and they're ambulatory. And ultimately, we we actually asked on our podcast if people are comfortable sharing like the end just because we want to like destigmatize it and I don't know almost have a roadmap for people like it could look like this. Yeah, and a lot of its ish Yeah, it's a lot of times it's issues with swallowing. And just yeah, it's kind of similar to end stages of Alzheimer's as like it really sounds like you just kind of starts to shut down. And there's a lot of issues to like with and I know this is like common with Alzheimer's to have just like hygiene and being able to you know, feed bathe, clothe, clothe yourself And, you know, sometimes some of the hygiene issues people, you know, develop UTIs very commonly. Yeah, which can be like a really scary situation really fast. And when you have someone who develops UTI that can't communicate, it's very hard to know that they need, you know, medication and stuff. And so yeah, it's very similar I feel to that same end stages, but the progression. It just, it's, it looks so different with every person like, they, we talked about it like they're like, like, long, like wide stairs, like, sometimes you're gonna stage for a really long time. And then you go down, and then you're in that stage for a long time and then down. But then sometimes things happen. And like, I felt like that the pandemic, like once my mom was isolated. I just felt like I saw a big change at that point.

Susie Singer Carter: 31:01

We all did. We all did. Yeah, we all did. It was it was really, the demise of so many people. And yeah, I watched my mom over zoom just slipped away. Because I couldn't see her. And it was like, it was awful. It was just awful. But I think I think you know what they say about Alzheimer's patients, if you've seen if you've met one, you've met one. And that's Yeah, that's really what it is. Right? And, and yes, there are similarities. But when I hear you talk, I wonder, you know, and this is something that I were addressing in our documentary, No Country for Old people because there is a lot of stigma and ableism for people with dementia of any kind of dementia. And then when you couple it with being older your mom was young god bless her heart because she was too young for sure. But you know, you there's a lot of stigma when it with those two, two biases right there. But you know, and I maintain this and I know this my mom had Alzheimer's for 16 years. And so I watched her progression and I know her and even as she was losing her ability to articulate with words she was there. You know, a you as a mother would know that as when you communicating with a child who doesn't have their language yet, there's they're there. You're communicating on a different level. Right? So did you find that with your mom as well? And and yes, you're right, there are these like, staircases of development, but there and but there's also those those those moments of lucidity. Where if even if they don't have their language, you're there with them and you are communicating because I could get my mom to laugh. I could cry. I could get her to sing with me even though the words weren't coming out. But she was there and the love was there. And the and heard enjoyment of her family was there. So did you also feel that with your mom?

Unknown: 33:08

1,000% Yes. And I feel like we like to talk about that a lot. Because I think sometimes it's very intimidating. being around someone living with dementia, you don't know how to act and you don't want to do or say the wrong thing. Or you don't know if they're understanding. But like, they're still there. There's still a person that was still my mom. And so oh my gosh, we would blast 80s music and one of my routines was I somehow negotiated with my job to work from home on Thursdays now working from home is like you know, everybody works. But that was a big deal. Pre pandemic and I said I want to spend Thursdays at home with my mom and I want to make some lunch and I want to you know,

Susie Singer Carter: 33:59

you're so sweet.

Unknown: 34:02

And we would our little thing every Thursday was we would drive through the Starbucks drive thru and we would blast 80s music and I would make like horrible jokes like her humor got pretty like simple, but like still like she would cackle and I put on her 80s music that was like from her heyday of college. And yeah, we just laughed and I could tell even to the very end. I mean, I don't know if she in her mind could say that's Maria. That's my oldest daughter, but like she knew me, you know, like, oh god, yeah, she knew I was there. And you could just see from her eyes, you know. And the other thing that was so beautiful make me cry. But she was so attached to my dad. I mean, like she couldn't communicate but like she her eyes are all Always on him, she always wanted to be with him. You could tell she was more at ease when she was with him. And he, oh my god, he took her here, there and everywhere. He did not say we're gonna be confined to a room to a bed, he, we took my mom to Ireland, he would drive her up to the beach in Maine. You know, we took her out to Nebraska to see your sister. And let me tell you, these things are not easy at all.

Susie Singer Carter: 35:31

When you're trying to have some idea and I

Unknown: 35:32

follow commands. It's very stressful. And she had some odd behaviors, which, and people are looking at her like, she doesn't look like she's, why she's doing

Susie Singer Carter: 35:42

that. Right.

Unknown: 35:42

But like, and and now we're like, oh, we gave her such a beautiful time. Those last few years? Yeah. Did you try our best? Yeah,

Susie Singer Carter: 35:55

you did. You did the best you could. That's how I feel. Even on my mom's last six months. I went there every single day because she was it was not a good situation. And I did my best dog and pony Suze show I could for her every time, like full on concert of my mom's older than you. So I was doing. I was doing Neil Diamond. And last year, the Neil Diamond and blasting the Tony Bennett. And you know, and I by the end, I knew every word by heart. Because I would sing it because my mom was a singer. So I just be singing along. You know, all the nurses would come by and go, Oh, the concerts on everybody. Come on.

Unknown: 36:38

You have to take on the conversation, you know, you have to be talking.

Susie Singer Carter: 36:45

Yeah, exactly. I really needed it was a show. I mean, I'd walk in and go go morning. What's going on? You know, and like, we tell her the whole story. I would tell her the story of her life all the time. And, you know, and I just she loved it. I tell her Yeah, you know, all the men loved you. And she go, like, Guess you know, you just just make her feel good about herself all the time.

Don Priess: 37:10

You as the caregiver, that this is I just want to talk about something because Susie discovered that she could tell you this better than I can. But she discovered at the beginning, she thought she was going to solve this, she was going to, you know, fix it. We're going to defeat this together, blah, blah, blah. And the frustration came when Susie kept trying to draw her back into our world. And she found that the big shift was when she leaned into her world. Did that. Did that process happen with you also,

Unknown: 37:39

I would say at the very very, very end. I have so much knowledge about this disease now because of what I've been doing with remember me for three years. I did not have that awareness and knowledge and like maturity at that time. Yeah. I got very frustrated. I, yeah. My mom always like, me and my mom are both like rule followers. So like, you know, I'll give you an example like. So my mom raised us going to church every Sunday. And my dad made it very important for her to continue to go to church. And he serves an altar. He's a deacon in our Greek church. And so he would need someone to sit with my mom. And in the Greek church, I don't know if you've ever been. But you're not supposed to talk. You're not supposed to move. It's not a chatty place. It's a very keep to yourself. And I would take my mom to church and she would want to hug all the people and all the pews she want to go up instead of kissing because she lost like the ability to like, like pursed her lips, she would touch people's faces. Yeah. And she would like go up to people like and it literally gave me so much anxiety. And I'd be like, Wow, I need quiet. You do all these. And like, it took me so long to let go of that and just be like, She's living with dementia like it. I wish I could say like, I did have an aha moment. But a lot of those like came later. So after my mom passed, the priest at our church, like went up and spoke about her, once everybody kind of like, started going back to church again, because she died during like the height of the pandemic. And the priests talked about how many people loved that my mom would go up and touch their faces and a lot of people thought like they were the only one like they would be like, she really liked me like I was special. She always came to my view. And here I was like so anxious like my Mom always taught me like you just you behave in church and, and like she was showing people so much love that they appreciated. So, you know, I wish I had leaned into it more I wish I had just accepted this is my mom, this is how she's expressing herself now. And other people were able to see that like the press was like she showed everyone love by touching their face. And like literally when she would do that, I'd be like, All right, go so embarrassed or embarrassment, your embarrassment? Oh, embarrassed, I was so anxious and they were loving it.

Susie Singer Carter: 40:36

Right, right. That's exactly how I learned to but it but you're not alone. Because I had the same. I just had my mom longer. So that's the difference. I had her longer. So my epiphany happened later, I had more time to have my aha moment because honestly, when I moved to my mom and with me, and I was you know, a filmmaker, and I was living in this live work loft situation here in Los Angeles, where it's almost like living in a studio and you have like valet parking and people have got their, their garages really aren't their garages. They're often their offices, and my mom is very, very social anyway. And now she has no filters at all. And she's up and running every day and loving on everybody. And aren't you great? And you're good looking and Hey, honey, done. I'm literally dying, like I'm dying. I'm like, What did I do? People are gonna hate me they got work to do when I finally had to move my mom into assisted living ever and I mean everybody said we miss your mom's so much. Can we miss her? We loved her so much she was such a joy to everybody in say you have I think that you know, we know our our loved ones as we picture them. And we have them in a box and that you know so I got to learn so much from my mom like I did actually from my daughter's like you will from your children is that I remember my young my oldest daughter being that way with other people's so open and so Hi, what's your name and touching them and loving on them? And I think Joey you shouldn't do that you shouldn't do that. And then you realize no, why shouldn't you do that people not enough people get love. And so So giving people love is so beautiful and

Don Priess: 42:33

authentic, authentic love to that is totally authentic. It's I think it's really important for all the caregivers out there to hear this and take this in because so much of you first of all, you have so much stress anyway as a caregiver and to have this added on work this constant. Oh my god, you know, worrying, embarrassed all that stuff. Let it go give let it go.

Susie Singer Carter: 42:56

The benefit of the doubt because like and I put this in the movie too. There was as I said a valet Parker and my mom used to you know, she no longer drove we had to take her license away. She loved her Cadillac, she would go up to the the valet and go every day and go Yeah, I'm I'm can I get my car to brown Cadillac, and at first they'd go. You didn't valet a card? The hell I didn't. What do you do with my car? I'm fine. Apparently, By day three, they were like, they already knew it. And they I didn't tell them what. And they said, Oh, you know, one of them said to her, Oh, well, your car's getting detailed. Remember, you don't want to rush them cost a lot. I love them. Right? I put that in the movie because my mom would go, you're gorgeous. I knew I loved you. You know, and, you know, and that's what happened, right? And so what we have to do is as caregivers is to trust our loved ones, trust other people to have enough empathy and to have enough vision to be to be there to be able to deal with it to be to confront it. And if they can't, that's their problem. Yeah. It's not our job to be in that now. You know what, you were so young. You're so young. I totally get it. I totally get it in. And you were the oldest of the family. So you you had a lot on you. I I think

Don Priess: 44:28

and you should feel no good.

Susie Singer Carter: 44:32

No, I mean, zero.

Unknown: 44:34

Other people that but yeah, you you're hard on yourself. You know, I wish I wish I understood No, like

Susie Singer Carter: 44:41

absolutely not. I had 16 years to learn. So trust me. It took a while and in you know, so I don't. I'm just saying like it's such a good thing that you're you're paying it forward by telling people your experience. Because every age it's different And my daughter's who were, you know, 16 and 20. So they, they learn through me, right? My best friend Don learned through me. He none of us knew. And we didn't know anything about it. And you know, I became a pro walking into those facilities with other people with em memory problems. At one point at first, I was like, ah, get me out of here. Like, after I was like, Hello, Jack. Hello? Dennett. Hi. You know, and I'm loving on everybody. Because now I don't see their disease. I see the people. Yes. And that's how we have to look for the people. Yeah, so tell me, tell us about remember me podcast? How you. I know you said a little bit while you started with tell us about your community that you've built that you should be so proud of. And then, you know, let's talk about your, your awareness week that you're doing coming up soon.

Unknown: 45:57

Thank you. Well, it's a perfect segue what you're just talking about because we started remember me because we wanted to remember our parents for who they were before the disease. We wanted to keep that, like in our hearts. And when we started the podcast. Both our parents were still alive. So just a backup. My my, my co host, Rachel Martinez, she's actually in LA. And we connected on Instagram, in the middle of the pandemic, she was caring for her dad. And I was hearing from my mom. And not a lot of people on Instagram, we're really talking about FTD. But we had connected through hashtags. Very millennial thing to do.

Susie Singer Carter: 46:42

So millennials,

Unknown: 46:44

millennial, we call it our millennial love story. Like we, I love it. Um, and yeah, I so I studied communications in college, I always had a passion for creating editing radio film. And I told my husband in, you know, April, when, that period of time during the pandemic where we were so wiping off our groceries. I don't know if you guys did that. But it was like, two hours, two hours, two hours, just the first time we did it, two hours of wiping? Yeah, it was a while. And two and a half year olds running around at this point, I wasn't living with my mom anymore. We got no space. And I was like, I need a project I need. I need to tell people what I've been going through, I need people to understand what this disease is all about. And when Rachel and I connected, I was like, Do you want to do this project with me, even though I did not know her? And she was like, yeah, let's get on a zoom. And we got on Zoom. And she was telling me about some of the things her dad does. And I was telling her about my mom. And we both just had this ease of like, I don't have to explain this. I don't have to be ashamed of what I'm saying. Because the other one gets it, you know, and she had her two songs running in the background and my two year old son's like crawling on my back. And we just like realize we're literally living like parallel lives, me and Boston, her in LA, like caregiving for our parents living with FTD. So we started the podcast, I was like, I think I can figure this out. I did some radio before. And we put it out there not really knowing. We didn't have any direction. In the beginning. We're just kind of like, we want to share our stories. And then we started getting all these people being like, I want to share my story on your podcast, I want to share my story. And then experts being like, I really like what you're doing. Can I talk about my research on your podcast, and like it just started growing and growing. And then Rachel's father passed in November of 2020. And my mom passed in December 2020. And we kind of had this moment of like, Wow, do we keep going? Like, it's it's done now. But it's not done when it's done, you know, like, and no, we were like, You know what, we want to honor them. And we have some traction here. And we're helping people and it's healing and people were very connected. When we came back, took a little tiny break, like maybe a few weeks after both our parents passed. And we came back and we talked about like our grief, people started to get really connected to our stories and just our friendship of supporting each other through our grief. And I don't know we thought it was very crazy that our parents passed like literally one month almost to the day. And so we had each other to like, I don't know, get through it, I know you don't get over it, but work through it. And then this just built it built and built. And now we're going into season eight. And we're doing a ton of advocacy work. The end of September is World FTD Awareness Week. And we have this plan to hit the streets in New York, Philly, and DC. And we're literally going to be going up to people, handing them the card of our podcasts and saying, Have you ever heard of FTD? Can I tell you about, you know, my mom? Or, you know, have you ever been affected by dementia? This is a podcast that you know, might help you. And so we're really like, just getting out there see, like talking to people and trying to connect. And then we also have some meetups scheduled with an each city where members of our community our listeners could come and meet. And so that's a very short version of like, the work that we've been doing over three years. But yeah, it's been an incredible project turn business to I don't know, life's mission. And yeah, it's,

Susie Singer Carter: 51:18

it's training your purpose. Yeah. And your purpose? Yeah. Yes. How lovely. Oh, that's lovely. Isn't that lovely? That's a gift your mom gave you?

Unknown: 51:30

She totally did.

Susie Singer Carter: 51:31

She gave you that gift. Yeah,

Don Priess: 51:33

that that's one of those. That's the Silver Linings that we always talk about, you know, how do you find that silver lining? What you know, how do you take the good out of all that you have to have, otherwise you can't survive.

Susie Singer Carter: 51:44

So your your love for your mom and her love for you. And, you know, you gave you this disinformation to and because you're, you're such a big, big ol heart, I can feel your heart. So you know, you're you're able to frame it in such a nice way, in a in a, in a way. That's it's, it's, it's palpable. And people can it will resonate and human. Yeah. So people, people will accept it and take it from you. And that's a gift. That's a gift. So congratulation data,

Don Priess: 52:22

data. Yeah, data just goes by us. You know, you give information, sometimes data and information, but it's got to be have the base of the heart. And, you know, that's, and that's what you're doing. And I think that's why it's so successful and why people are taking to it. You talked about grief. And you also talk about normalizing grief. What is that? And how do we do that?

Unknown: 52:45

That's a great question. I think just talking about what you're going through and telling other people that like grief doesn't need to be like, you know, someone died, or I'm grieving. I think that's what we all were taught, you know, that's, that's something we know, right? Someone dies, new grief. But no, you can grieve the loss of the relationship you had with your loved one, because they change you can, you can grieve that they've lost their ability to walk or to play the piano, there's so many things that, you know, there's a different picture of grief than what I think we were taught. And I think a lot of times we were taught, you know, just don't talk about those things. I know definitely, in my culture, that was that was a big thing. Like, gotta be strong, you know, don't talk about it. But I really feel like for us, like normalizing grief is about just talking about it and realizing like, you form the deepest connections, when you talk about your grief. And whatever it is you doesn't you don't have to have lost a parent or a loved one to dementia, just grief and getting into it and the vulnerability that comes with sharing. You know, that's how you really connect with people. It's not, you know, Oh, you like that band. I like that band too. Okay, yeah, that's nice. But when you really get into it, it's helpful. It's healing it just overall, like we just want people to understand they're not alone. These feelings are normal. They're awful, but they're normal. And, you know, I know the whole dementia community understands, like, anticipatory grief is a bit ambiguous. The thing like yeah, you know, people don't understand maybe on the journey don't understand that. So how can we just like keep having conversation about it, I think is kind of how we try and normalize it and we talk about talking to our kids about grief. You know, we learned so much from little people. Now they pry just,

Susie Singer Carter: 54:58

yeah, true. Have anything we learned from both ends? Yeah. from our, from our children.

Unknown: 55:08

And I think kids are just, I don't know, they they also have like, no filter sometimes and right. But they also just see the world in such a beautiful way. And like seeing our kids go through their grief journeys and letting them know it's okay to talk about. We we post on Instagram, like some of the things our kids say, because they're really young and like, they're, they're all boys. And they'll say things like, your mom's still dead. And we're like, oh, that's a lot for us to have back there. But yeah, I mean, I think we're, we're trying to change the conversation to with our kids, because I know like, the way I was raised is like, you just don't talk about it. But I think that can create more anxiety in kids. Because they know something's wrong. They know something, they can feel it. And so to tell our kids, you know, it's okay to have these feelings. Let's talk about it. You know, how did that make you feel? Or also like, how do we channel our grief in a beautiful way? Like, how do we remember, I know Rachel does with her boys on her dad's birthday. They make they call it APU. Make APU sundaes. His favorite, you know, ice cream sundae that as peanut butter in it, and that's how they think about him and talk about him and remember him so it doesn't have to be all sad either. We

Susie Singer Carter: 56:28

can write my granddaughter who's three now but she was two when she finally got to snuggle with my mom and she'd only seen her on Zoom. And, and my mom wasn't really speaking at that point. She was you know, it was she was in bed and and eaten is her name and eaten. I have video of it. We were just all blown away. Like there was like, it was like she had her relationship with my mom. And she wasn't really fully verbal yet either. might, you know, but the two of them had their own conversation. They were she got into bed on her own. laying next to my mom patting her looking at her kissing her. My mum was kissing her. They knew each other. And there was a whole lot of stuff going on. And to this day, they call her nanny single word. Yeah. And to this day, my my little granddaughter will say she calls me Gaga. And she says Gaga or net. Nanny normally I nanny normies here and I say, Oh, is she? And she says Oh yeah. And I say what she said. And she goes Oh, she says, she says she loves to me and I go What else does she do? She gives me kisses and she sings well, she doesn't know my mom sings. So I'm just saying that I'm not to spin a little Uyu here, but it's interesting, right? Okay, no,

Unknown: 57:47

he does. He does this all the time, just

Susie Singer Carter: 57:51

out of nowhere. And my grandma who looked like Hedy Lamarr, I have a picture of her, who she's fascinated with she and her name was rose, and she calls her nanny, Rosie, she, of course, never met her. And she never been all the time she goes. And she goes nanny, Rosie loves you. And nanny, Rosie says, Hi, she talks to both my mom and my grandma, all the time. And I'm not that way. I don't talk about you know, this just all on her own, just out of nowhere. So just throwing that out there particularly

Don Priess: 58:23

everywhere. We were at. We were at the zoo with her once. And often she says Oh, Nanny Normie is here. She says hi. I mean, we're just walking around the zoo. So it was It wasn't related to her seeing a picture of her. So I mean, it's amazing, beautiful,

Susie Singer Carter: 58:37

what we you know, and I just want for me, my mission now is just to to give people their dignity and their, their humanity throughout their journey, what whatever is going on with them, you know, with their health, they are entitled to their dignity and their and their choices and their humanity because they are there and you only have to look at a two year old who recognizes it right away and go okay, because we are all you know, between childhood and and and our elder years. We are bombarded with you know, we have so many facades up and we're bombarded with social construct and so we often can't see what's right in front of our faces. So is there anything we missed talking we could talk to you for hours? Your delight? Gosh,

Unknown: 59:30

I know. Thank you. Um, no, I mean, I just love talking about my mom. So thank you for giving me the space to do that. I feel like one of the beautiful things about having remember me is that so many more people have a connection to my mom now even though she's gone. And so I just I encourage people keep talking about your people. Don't be afraid like, Oh, this is too dark. I want to talk about You know, my dementia journey like that's in the past now, no, still talk about them because like, to your point, you know, with your granddaughter, it's like if you hadn't talked to her or given her the opportunity to meet your mom and snuggle with her, like, would she be talking about these things? I don't know, maybe she's has some telepathy stuff going on or whatever. But you know, I mean, let's just keep talking about them. And it's healing and it's keeps them their legacy

Susie Singer Carter: 1:00:32

alive. Yeah. They're like, my mom is with me all the time. And I hear you. And I'm grateful to give you a platform to talk about your mom because I also love talking about my mom. And I'm also grateful that my so many people know my mother. Through the movie that we made, and through my podcast, or podcast, and through the documentary that I'm doing, and you know, more people know my mom, probably than they know me. And they love her. And that makes me so happy. Like, it makes me so happy. I'll tell you, I'll leave you with this one thing, which I love about my mom. That was when I told her I was doing a movie with her for about her. And I was I showed her the the trailer and I said, Mom, do you remember Valerie Harper from Rhoda and Mary telling her she goes Of course. And I go, Well, I'm doing a movie about you. And and she's playing you. And she goes. And I go, I go because you're terrific. And she goes, that's true. I love her. And so I was like, I just loved it because I got to make her feel good about herself. So it was so lovely. So thank you for sharing your story with us. Thank you for doing what you're doing. Thank you for representing the Milani halls

Don Priess: 1:01:57

it's important to

Susie Singer Carter: 1:01:59

know so you're doing as good service to your to your gen because it's important because we get wrapped up in our day to day is that aren't you know, everything's important, right? But I mean, we need to, we need to take into account that we forget, especially and rightly so in your 30s and 20s, and 30s and 40s. That vibe is finite. And we need to to be more Zen and live in the moment and and recognize that you know, it's fleeting. And so we need to take a moment. And you're telling and you're letting people take a moment and in a lovely way. So thank you so much. And thanks to your to Rachel, Rachel, thank you for doing this.

Don Priess: 1:02:42

And we'll put up all your info, all your information will be on our liner in our show notes and

Susie Singer Carter: 1:02:48

liner notes because we're going to do an album Yeah. And yeah, Maria will be having she'll be passing jokey there. Streets and where are you going to be in Philly? And let's see where you're going. New York. Yeah. And do you see we CDs to sign?

Don Priess: 1:03:16

Vinyl, vinyl,

Susie Singer Carter: 1:03:18

vinyl. That's right. Well, I love I love you and which is appropriate because Why don?

Don Priess: 1:03:29

Well, that is because love is powerful. Love is contagious, and love conquers all. So we thank everyone for watching today and listening and like us and all those good things. And like Maria and her wonderful podcast, and we'll see you next time. Take care