MARY LOU FALCONE: I Didn't See it Coming: Scenes of Love, Loss, and Lewy Body Dementia

My co-host , Don, and I have been blessed with so many amazing guests, but truth be told, our 81st guest, Mary Lou Falcone , ranks as one of our very favorites!! We fell in love with this EXTRAORDINARY woman and we have no doubt you will, too.

For over 50 years, Mary  helped guide the careers of celebrated artists – Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor – and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, Vienna Philharmonic. Then combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness.

Mary became a caregiver when her father had a massive stroke. She was 10 years old. The experience prepared her for the day, many years later, when her husband, a world-renowned cartoonist, illustrator, painter, and 1950s rocker, Nicholas 'Nicky’ Zann, was diagnosed with Lewy Body Dementia (LBD).  Nicky, who died from LBD in 2020, was the catalyst for Mary's first book,  I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.   

  "Mary Lou Falcone is an expert storyteller. After years of telling other people's stories, she now tells her own compelling story." Friend and client, James Taylor.

In her memoir of love, loss, and Lewy body dementia (LBD), Mary Lou Falcone takes readers on a cathartic journey of caregiving that is filled with hope, laughter, and tears, making stops along the way for music, romance, and surprises. Written to inspire and give hope, Mary Lou unflinchingly shares in detail her late husband’s struggle with LBD, providing informative, compassionate, and inspiring insights into dementia. As she emerges transformed and energized, so will you after reading I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia .

Learn about Lewy Body Dementia, why it is difficult to diagnose, and the special challenges faced by caregivers. Enjoy Episode 81!!
Love conquers alz,
Susie xo

Transcript

Don Priess: 0:00

When the world has gotcha down, and Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. love This is love conquers 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: 0:40

Hello, everybody. It's Susie singer Carter.

Don Priess: 0:43

And Don priests and this is love conquers all calls.

Susie Singer Carter: 0:46

Hello, Susan here that what was that? It was a ding on my computer was so so

Don Priess: 0:53

dang, I didn't hear the dang but you know, you know, it's that's life. It's you know, we're live and work. Well, we're not live, but we are alive. And that along that goes computers and dings and all that stuff. Thank

Susie Singer Carter: 1:05

you. Wow, so astute. I know how you do it knows.

Don Priess: 1:10

I'm doing okay. I'm doing fine. We're, you know, just came off of a weekend. You had an exciting weekend, didn't you this weekend.

Susie Singer Carter: 1:18

I did my little blind little granddaughter just turned one. And we had and we call her a little froggy because she for some reason my daughter thinks she looks like a little froggy. But she's so gorgeous. And she looked incredible. So we did a froggy themed party. And if you guys want to see some amazing decorations, I'm not I don't usually brag about this, but feel free. What? Feel free Feel free. Yeah, I first my daughter made the most incredible she's incredible Baker and she made this beautiful cake that was a frog that is so incredible. And it sat on top of this red and white toadstool plate and it just so beautiful. And then I provided the crudity and these sculptures made out of melon and watermelon, cantaloupe and watermelon that are frogs and all the crudity coming out of their mouths, including a fly on a tongue, but not a real Yes.

Don Priess: 2:17

And do not think for a second that there will not be accompanying photos. If you're watching this currently fabulous photos. If you're listening to it, just go to my

Susie Singer Carter: 2:30

girl, Susie singer Carter and I will I'll proudly show them off because I was so I was so excited about the Makina app. Beautiful. And if you want to know how to do it, I'll I can give you the I'll put it in the show notes. Why don't I put it into that? Yeah, because it's so much fun. It looks it looks fancier. It's yeah. Does it take time? Yeah, but it's not that hard. At the end of the day, it's not that hard. So yeah, anyhow, especially if you have

Don Priess: 2:57

someone to help cut the vegetables. Huh? Who would that be?

Susie Singer Carter: 3:02

Oh, well, you know, yeah, good friend. If you have a sous chef, like like Don

Don Priess: 3:07

chef, or Don chef, or the sous chef, I'm the dawn chef.

Susie Singer Carter: 3:11

That's right. So anyway, but it was so much fun. We had fun. I love a good theme. I love a good theme. Good like a theme. I do. I do. There were there were toadstools and Froggy things all over the place. It was so much fun.

Don Priess: 3:28

In fact, send your suggestions as to what other crudity type animals Susie can make and maybe she'll do that for you. Okay, so

Susie Singer Carter: 3:36

today, there's, we have a great guest who I just have a feeling is so special, just by reading all her stuff and finding out we have so much in common in terms of music, and her background. And and, I mean, she's younger than my mom, but she also was in that 50s 60s era of music, which is so exciting and so powerful. And anyway, how she used music and in her caregiving is just incredible. And, and that's just the tip of the iceberg. Right, John? Yes,

Don Priess: 4:14

absolutely. She has a remarkable story, and I'm going to tell you all about it right now. Mary Lou Falcone is an internationally known classical music publicist strategist, who for five decades has helped guide the careers of many prominent artists, including Van Cliburn, who stuff will do to Mel Renee Fleming, Sir George solty and James Taylor. She has advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic and Vienna Philharmonic. Nicholas Nicki Zhan was a popular 1950s Rock and Roll musician who became a world renowned cartoonist, Illustrator and painter. His work has been credited with being the inspiration for Roy Lichtenstein for 37 years they filled each other's lives. With love, laughter and music, but their journey together took a dramatic turn when Nikki was diagnosed with Lewy body dementia, an often misunderstood and widely misdiagnosed form of the disease that is the second most progressive form of dementia after Alzheimer's. After Nikki's passing in 2020, Mary Lou chose to inspire and give hope to others. In her poignant memoir, I didn't see it coming scenes of love loss and Lewy body dementia. she bravely and boldly shares in detail her late husband's struggle with LBD providing informative, compassionate and inspiring insights into dementia. She takes readers on a cathartic journey of caregiving that is filled with hope, laughter and tears making stops along the way for music, romance and surprises. transformed and energized. Mary Lou Falcone is now combining her communication skills with her background as a performer and educator becoming an advocate for Lewy body dementia or LBD. Awareness. And we are so looking forward to sharing her amazing outlook and energy with us today. So let's say hello to Mary Lou Falcone.

Mary Lou Falcone: 6:04

Hello, Susie. Hello, Don.

Susie Singer Carter: 6:06

Mary Lou. This is so great. We had technical difficulties, but we're here we made it. And it's all good. I say it is, the better it's gonna be so we're gonna have a fantastic interview. And gosh, I'm, I told you a little bit a couple minutes ago, I'm so excited to talk to you because your background in music is is so similar to my mom's. And we and music was such a big part of our relationship as she journeyed through Alzheimer's. And yeah, and my mother started singing opera and at 10 years old, nine years old, and was working with one of the big the greatest, you know, protegees in New York City at the time, and, you know, really found her her way through life with her voice.

Mary Lou Falcone: 6:58

It's it's a God given talent that takes us on a journey that we didn't see coming.

Susie Singer Carter: 7:04

Right? Yeah. And it's in it is a God given because, you know, I say that her voice was, you know, this, this incredible instrument that you can't add sure she trained but it was, you know, it was extraordinary. It was

Unknown: 7:21

using train, but but the gift is the gift

Susie Singer Carter: 7:25

gift is the gift. Yep. And so tell tell us about your gift. First, I want to hear about your gifts, and what it is, and then we'll move into how you use your gifts so beautifully. Okay,

Unknown: 7:40

well, my gift early on was this thing called a voice. And basically, I found out at age nine, that when I sang all the adults in the room began to weep. Why was that important? It was important because between nine and 10, almost age 10, my dad had a massive stroke. And it it was so horrendous, that he never spoke again for the rest of his life. And that allowed me to to become an adult, very fast, and then becoming an adult. You know, in those days were in the 50s, you didn't talk about family situations outside of the family. And so therefore, no one knew what was going on at home. And I had to keep brother silent about my feelings, my emotions, but singing, I could invest everything into singing, and emotionally, just let it all out. And that's when the adults in the room got the message that something was going on. And that was the beginning of using a talent in a way that changed my life.

Susie Singer Carter: 8:54

Incredible and so young. And and again, it mirrors my mom, the conversations that I've heard from my family that would say that, you know, my great aunts that would say they her nickname was loving my mom and they'd say lovey would open her mouth and we would we would be frozen. We had to you know, it was it was just amazing. Her, you know, this, this, this tiny little thing with this powerful voice. And and it's it is it. It's transcends everything right, it transcends.

Unknown: 9:27

It does. I think that, you know, I, my belief is that we're the vessel. I didn't believe for one minute it was me. It was the voice coming through me to articulate. And that voice at the beginning was the singing voice. And as I got older and decided that that singing was not even though that's what I was trained to do. I felt that my ability to communicate, took many forms. And the most powerful form for me was speaking. My dad couldn't speak at age And as I mentioned, he was 37 years old when I was 10 years old, and he very young man, crime, everything was was going for him upwardly mobile the whole nine yards, and then this massive stroke which was misdiagnosed. And in the process, I learned that communication was probably one of the most important elements in life. And how I chose to communicate then became a study of life study.

Susie Singer Carter: 10:30

Wow, it's so resonates with me because as as Alzheimer's progresses, you know, inevitably we, they, we who suffer with it, lose our ability to articulate, we don't lose our ability to communicate, but we are we do lose our ability to articulate with words. And so exactly right. Right. And so I had to find a way, which, of course I have, I am a big old blabber mouth. So I did talking for both of us, and that and also used music and used the same way I would with my children before they could speak is there is a non communication, you know, I mean, you know, there's nonverbal communication. That is powerful.

Unknown: 11:21

Right? Absolutely. My husband, my late husband, Nicky San, didn't have Alzheimer's, he had Lewy body dementia, which is a cousin to Alzheimer's, they're very similar. But the very big difference is that with Alzheimer's, it is a slow and steady descent. And with Lewy body dementia, it's like being on a roller coaster one day the person is 100%, who they are the real person all there. And then the next day, that same person will look at you don't say, who are you? And it goes back and forth, which is cruel and inhuman, but that's what it is. And so, my late husband also was into music as as a teenager, he was a rocker. Now everybody says, oh, yeah, we're sure everybody had basement bands in the 50s. No, Nikki was on the same stages. Nicki Zahn was his name. Nicki was on the same same stages as Jerry Lee Lewis, Patsy Cline, Johnny Cash, so he was out there as a real rocker as a teenager. And by the time he was 21, he decided, nope, my art is more important, as in fine art and illustration and caricature is more important to me than singing. I've done the same thing now for seven years. Now I'm going to be an artist. But the singing thing never left. It never leaves you, including the last stages of his Lewy body dementia. One day, I was sitting in my office, which is across the hall from our apartment, and I heard the piano wailing. Now Nicki could barely walk at this point. And all of a sudden, I hear this rock coming out of the apartment could only be one person, the music never left. That was always there.

Susie Singer Carter: 13:09

This is so extraordinary, because you and your husband, Nikki, so similar again, to my mom, I keep bringing it back. But it's just such a it's so part of my my fabric of my life is that she too, like she signed with Capitol Records and was singing with like the greats and had her own radio show and was, you know, singing contemporary jazz at all the clubs in Los Angeles. And then when she got her deal, they wanted to send her on the road. And she was like, I don't want to go, that's not my life, I have other things I want to do, I can always sing. And she gave up that career of singing to do other things that were more important to her. But as you say, the singing never left in the singing was a part of our lives. From the day I could hit listen, you know, and

Unknown: 13:54

the person with Alzheimer's or with Lewy body dementia, that's in there, that never leaves, the core is part of it, which is my belief. And this is just my belief, but I believe that the person is there, whether they're communicating or not, that person is in there someplace. And so every gesture that we we provide that loving hand in hand, the kiss on the cheek, the hug, all of those things mean something, because somewhere in there, they're receiving. And

Don Priess: 14:27

that's why we always said yeah, we always said that, you know, people, some people say, Oh, well, you know, they have they, they're not going to know if you visit them or not. They'll not going to within five minutes or two minutes, they won't even know and it's it has nothing to do with up here. And it's all about here. Right? And that's and that's the part that stays with you on

Unknown: 14:45

your soul, right? It is. It's the heart and the soul that take it in and the verbal communication leaves. We understand that. But the feelings are there. Absolutely. They're there. It was a toward the end one day Nikki said to me, I said, you know who I am Nikki? And he said, No, I don't. But it's all right. And it was maybe the sound of the voice or the touch whatever it was, he knew he was safe. Right? So you're there are many ways to communicate, aren't there

Susie Singer Carter: 15:22

so many ways, just words. And I love that you wrote about this and I love that you're spreading the word about this disease that you know is is not as well known as Alzheimer's and and that said, Alzheimer's is not well known. You know, people think they understand it, but they don't. And so bringing it to light with your book, and and with your personal journey is so important because it's, it's what I try to do is to let people know that they are still there. And and whether they're, you know, losing some of their their rational thinking their intuitive thinking is deep, they're deep and will Oh,

Unknown: 16:07

absolutely. Absolutely. And, you know, with with Alzheimer's with Lewy body dementia, as you said, Lewy Body Dementia is not rare. It's not well known, but it's not rare. It's the second most progressive dementia, a form of dementia after Alzheimer's, affecting 1.4 million Americans. That's a big number and not even family members.

Susie Singer Carter: 16:31

Can you can you describe what it is Lewy body because a lot of the first time I heard about it was one of my, one of my mentors who used to to run the Los Angeles Alzheimer's chapter, her mother had Lewy body and I had no idea what it was. So I don't know it's so

Unknown: 16:49

lonely body you begin by it's it's memory loss. For starters, it's its inability to retain daily functional things, you just you don't, you'll forget how to brush your teeth. You'll forget sometimes how to walk. I mean, it's there's a mobility issue involved in this as well. So it is mental acuity that just is waning. And very often Lewy Body is is present with Parkinson's. It's called Lewy Body Dementia with Parkinsonian aspects. And when Parkinson's is is there, the whole mobility issue becomes exacerbated and exaggerated as well. So you have you have problems walking, you have problems, swallowing, you have problems grasping anything, your hands will betray you. And then the memory goes and then things like anger issues come into it. But all the while this is fluctuating. And that's what makes it different than Alzheimer's. Also hallucinations. At the very beginning of Lewy body dementia, very often, there are hallucinations, either visual hallucinations, or auditory hallucinations. In Nicky's case, being a musician, it was auditory. He would say Do you hear the music coming out of the pillow? My answer was no. But I know you do. Do you hear the voices coming out of the faucet? No, but I know you do. So it's all of these things wrapped into one. It started for us. We were in Vienna. And one night we were supposed to meet at a restaurant that he knew well, it was a block and a half from where we were staying. And all of a sudden, an hour later, Nicky wasn't there. I got very frightened. I went out to try to find him. Mercifully. I found him walking toward me actually, in the main square, which was a miracle. And as I looked into his eyes, I knew something was dramatically wrong. And he said to me, you, you didn't write down the address. Now he was never accusatory with me. That was unusual. And I said, You know what? You're 100%. Right? My bad. I should have written the address down and I didn't, I am so sorry. And then I began to notice memory issues. I began to notice he would trip and fall, you know, things began to accumulate. And by the time it was diagnosed, he had already gone through triple bypass surgery, which had exacerbated the situation. Sometimes anesthesia is your worst enemy, and that you're supposed to get better after a triple bypass surgery is supposed to have more energy, you're supposed to be more mentally acute. None of that happened. It just got worse and worse. And ultimately, it was diagnosed as Lewy Body Dementia with Parkinsonian aspects.

Don Priess: 19:48

Wow. Did I know you said something. It would go in and out like one day he would kind of be back. Yes. Would that include the physical could he then know how to brush his teeth or was it Oh yes, absolutely. So every Ben comes, everything

Unknown: 20:00

comes back. Amazing. And also, if I would remind him to Nicky, your your right leg is dragging, he would correct it immediately. So it, of course, then, you know, down the road, it gets to the point where it's not able to be corrected. But even at the end, I mean, a couple of months before he died, he said to me mirror though, you have to write. And I went, right write what you know, it didn't mean anything to me until he passed. And then I knew what I had to write, I had to write about our journey, for two reasons. One is to put a real spotlight on the body dementia, which is not well known to me, the two phrases that I get all the time are, Louis, what? And how do you spell that? If you can't spell le w why? You're not going to find it. So that's that's primary. And, and the other thing was that caregivers, you know, as a caregiver, and I'm sure Susie, you experienced this, that as a caregiver, there are so many things that you want to share. Because you know that there's somebody out there feeling that they're the only people on Earth who are dealing with this, you feel so alone, so isolated. And my my real reason for writing this book was to let caregivers know that they are not alone. We're all in this together. We're here for you. Yeah, there are things you can do to be helped. And to help those you love.

Susie Singer Carter: 21:28

Absolutely. I'm very impressed with you. Because the fact that you leaned in so quickly, that you had the instinct to lean in and say, you knew something was wrong. You didn't know what it was. But instead of pushing back, like, you know, in relationship, we say, What are you talking about? I gave you you should have had the address, you could have looked it up, whatever. Instead, you your intuition kicked in, and you leaned in right away. How Why do you think that happened?

Unknown: 21:59

I think it happened because this is a man that I loved very deeply that I love very deeply. And I had known him for a very long time. We had met in 1973. We were friends for 10 years, he was married to someone else. And when they amicably divorced, he and I got together, we were together for 34 years. And in year 34 of being together, I was beginning to notice all these signs and symptoms. And at that point, I said to Nikki, you know, I think we should get married. And he looked at me and he said, I have been asking you for 34 years to marry me. And your answer has always been no. Why spoil something that's perfect, which is true. That's exactly what I said. And so what's your hurry now? And I gulped, and I said, Well, we're not getting any younger. We were both in our 70s at the time. And we love each other very much. So why not? What I didn't say was, I'm really frightened that something is happening. And I want to be here to protect you. Right? Yeah. So the instinct kicks in, you know, somebody's so well, that you know what's going to give them comfort, and you know, what's going to agitate. And in that moment in Viana, when I looked into his eyes, there was no way that I wanted to be the agitator. On the contrary, I'll take the I'll take the hit. Because what what does it serve it to argue it serves nothing, I think, but

Susie Singer Carter: 23:34

but still, you and maybe it was the years that you had together and maybe it was the years the year that you the age that you had arrived at at that point, because I cringe and I knew my mother and of course my mother wasn't my my partner. But she was one of the loves of my life. And I felt very close to her. And I knew I was the only one that saw the signs early and you know, it was poo pooed by everybody else. But I also thought I had delusions of grandeur that I was going to fix it. You know, and

Unknown: 24:09

you know, children do that I had that with my dad when I was 10. I was told by the rehabilitation center where he spent two years that when the insurance money ran out and my dad that I the now 11 year old could be the person to help train my father especially in the area of speech. Now today of course that wouldn't happen because no child should be entrusted with doing that with a parent. But I was just the kind of kid that thought Yes, I can do this. I can make my dad speak now. What we didn't know he didn't know I didn't know and to be fair, the rehab people didn't know nor did the doctors that both speech that centers had been knocked out. The alternate you know when you have a stroke, you can very often train another part of your brain. It the damage was so extensive. that it was impossible. So I had had all those years back there the the time to, to be that impatient child to think that I could do it, I could make the difference. By the time I was in my 70s, I knew that patience was an absolute must, and that I had to make the situation gentle,

Susie Singer Carter: 25:23

beautiful, so beautiful. Yeah, I love that it takes you know, it, I think a lot of us it takes time to, to understand the disease that we're dealing with, and to do what's best for the person that's living with it, because they don't have control, we have control. And so that's what I learned.

Unknown: 25:48

But you are to just hit something really important. Where they can have control, you must allow that leeway. monitor it, of course, you're not going to put someone in danger, but allow them to feel at least that they're in control. Because nobody wants to be controlled 100% of the time. So it's about dignity, isn't it. And at the end of the day, it's about preserving someone's dignity. And, and Nikki said to me, when he was diagnosed, he said three things. The first was, I've always wanted to meet your father. And now I'll have my chance, which meant he knew he was dying. The second was, Mary Lou, we have had a great run. We cannot be sad. And the third was, please help me to maintain my dignity.

Susie Singer Carter: 26:44

Ah, what a guy. What a guy he so incredible. It's beautiful. I had such a gift that he gave you and that you gave each other it was just so beautiful. i You're

Unknown: 26:58

right. I mean, I live by those words. Yeah, we've had a great run. We cannot be sad. And to this day, I cannot be sad. Do I cry? Sure. I do. Yeah. And there. But have I said no, absolutely not.

Susie Singer Carter: 27:13

No, it's beautiful. My mother's my mother gave me a gift. Similar. She said to me, when I go, I want you to know I don't do not be shall be sad. Because I've done it all done everything I wanted to do. Been there, traveled, loved, lost, loved again, and had everything I ever wanted. And you know, so just know. And, and I hold that close to me. And she also never wanted to be a burden to me. And I never wanted her to feel like a burden to me because she wasn't because that Oh.

Unknown: 27:52

And as a caregiver, I think that it's really important to not let the person you're caring for us to see the sadness, or see the frustration, or sometimes the anger. It's all there. It's got that human but in front of the person. It has to be love. That takes over. I mean, your podcast is so aptly named. Love conquers Alzheimer's. I mean, what a beautiful concept because it is in the end of the day, it is love. That's at the bottom of all of this. And without that, you know,

Susie Singer Carter: 28:27

it doesn't work. It doesn't work, right? It says yeah, it's it's 100%. I Donald tell you, during last year when my mum was was going through her final journeys and, and even before that, when I would go to visit her, and sometimes I would just miss the old mom. And I knew she was frustrated and I would throw my arms around her and I would I tears would come out, but I wouldn't back up until they were gone. Because I'd never wanted her to think I was sad.

Unknown: 28:55

At her salutely Absolutely. And you know, when when, when you're dealing with all these dementias, you're also dealing with, with the physical aspects of all of it, especially toward the end, which are not pleasant. I mean, you're dealing with with incontinence, and you're dealing with all these things that nobody talks about, very hard to get people to talk about them, which is why I write about them. I don't I don't hold back on any of it. But the person who's going through it doesn't need the extra angst of knowing that you have cleanup duty, for instance. And so I would say things like, Nick, that's what washing machines are for. Don't worry about it. You know, it's fine. That happens to all of us. I mean, just anything to make it okay. Right? Because that's really important.

Susie Singer Carter: 29:44

So important. Yeah. Yeah,

Don Priess: 29:46

you say that. Yeah, I know. I just wanted to touch back. You know, you talked about you know, the in and out of it, and how that was kind of a curse. I mean, for some people who who are dealing with people with Alzheimer's disease Oh, I would love to have them back for a day. That would be amazing. But and I can understand the frustration that it would cause. But was there a knowledge? Did he have knowledge of how he was on the other does he did? Did he have? Did he talk about it? Like, I feel like this or I felt like this?

Unknown: 30:19

Absolutely, absolutely. Nikki knew. He knew so much about what was going on that actually two months before he actually passed. He wrote a poem that I found three months after he died. It was in a sketchbook, you know, he was an artist. So he always was sketching, and he had a sketchbook. And I'd looked at the sketchbook, and I didn't see this part. And three months after he died, I went back to the sketchbook, and I'm flipping through it one morning, and I go through a bunch of blank pages. And I come upon this poem that describes what it feels like to have your descent into Lewy body dementia. It took my breath away. It was so articulate, it was so brilliant. And it basically described that when our love was new, it was all fun and games and exciting and wonderful. And then, shortly, not surely there, after many years thereafter, we were invaded by a third party, who would periodically take over. And this person was very unwelcome. And when he Nicky looked in the mirror, the horror that he saw, was himself. Ah, wow, done much more, much more eloquently than I just shared it. But I put it in the book. I didn't see it coming scenes of love loss in Lewy body dementia, because it is the clearest picture of what someone is going through that I ever heard. Which

Don Priess: 31:54

means that people who have Alzheimer's, who don't have those moments of clarity are probably feeling that all the time. They because they can't they can't verbalize it. But, but it could be I'm just guessing at that, but it could

Unknown: 32:08

be we don't know. But in the case of Lewy Body, we did know and, and to your point about coming back, you know, is it a blessing? Is it a curse? It's for me, it was a blessing. Because I would see Nikki again, before he left again. But for him, I'm not sure that it was such a blessing. I don't know. Yeah,

Susie Singer Carter: 32:33

I I hear you so much. That resonates so deeply. Because I think for me, and I've talked to a lot of caregivers, obviously with that have more, you know, with people with dementia, and those moments of lucidity are gifts for, you know, for in the in the long run. The gifts that we get like, you know, a month and a half before my mom died out of nowhere. She wasn't talking she had been through so much, you know, in another hospital and Don was there and I just we were I was doing my dog and pony show like I do singing every Tom Jones song I could and every every lameness song I could. And out of nowhere, my mom just clear as Bill said, I love you.

Don Priess: 33:21

Oh, and that was the last thing she said.

Susie Singer Carter: 33:25

And I know how hard that was for her. I said to her that you just ran a marathon. Because for her to get those words, pull them down, get them to the you know, the mechanicals of it just that without forgetting. I was spent I was like that's it. That was her gift to me.

Unknown: 33:43

That's the gift of a lifetime Suzy. You know, and that's, yeah, that's so beautiful. Yeah. What a gift. Right at the end. Yes,

Susie Singer Carter: 33:53

that was it. And she worked. I know that that was so hard for her. But she had to tell me. She had to tell me and whether she knows it was Susie or not, but I think she does. I think she did because she lit her heart and in her heart. It was somebody that she loved. And that was

Unknown: 34:11

all you need. That's all you need. And as a caregiver, you know, when you stop to think about the gift that we're given, given as caregivers, yes, it's hard. I'm not going to sit here and say gee, it's it's, it's easy. It's not. It's hell it is. But at the end of the road, that you've been given the privilege of caring for someone you love. That's the gift. Yep. And it will never it it will always be part of you.

Susie Singer Carter: 34:45

I agree. I mean, coming on the other side of this, like you, I feel like what could be more important than that? Nothing,

Unknown: 34:56

nothing. Nothing. Absolutely no thing, nothing is the most important thing I've ever done in my life to starting with my dad being able to care for him as a child, yeah, then turning parlaying that that caregiving into actually a profession. You know, I basically went from being a singer, professional singer, to actually opening a business in the public relations, which took care of artists that I thought were great artists. And that's a form of caregiving. It sure ever stops, right? Then the ultimate gift and caregiving for the person that you love most in the world. Yes, that's a gift. But

Don Priess: 35:36

you continue your caregiving because you're now caregiving for everyone else by sharing your stories. So you know, many people, once they're done with it, they want to kind of like, go, I'm done with it, because it's so hard. And I'm not passing judgment on them. Because not at all. But you and Suzie, and others, like you who are sharing this with the world right now that is, can your caregiving, it's continued.

Unknown: 36:03

I think that, you know, everyone has to search their own heart and soul. And, and as you said, it's not for everyone. Everyone can't do what what we're doing or would want to I, I have always felt that I've always felt I had a fourth fact. You know, I, I alluded to the fact that I sang, I taught I was a teacher for many years, and then open this public relations business, which I've done for 50 years. But at the end of the day, I always thought, what's going to be my fourth act, I've had three acts. Now, what's my fourth act, and I kept probing that. And then all of a sudden, the sun came out. And I knew what my fourth act was. And it was giving back in a way that the universe had given to me, I had been given the gift of knowledge of ferreting out information, of knowing about things that needed to be exposed, that needed to be out there. And now it was my turn, to take all of that, synthesize it in the form of a book, and give it back. If it helps one person out there, than I have done my job.

Susie Singer Carter: 37:17

I love it. You're such an your job, elegant, accomplished woman that I just admire you so much. Just everything about you. You're just the epitome of class. And, and, and just every sweet. Yeah,

Unknown: 37:33

it's funny when when I am a publicist, as I mentioned, for 50 years, but I hired a publicity firm, when this book was coming out. And we were on a zoom call. And they said to me, so what is it that you want to achieve with this book? And I gave an answer. And they all laughed, hysterically. And then they stopped laughing because they realized I was serious. And I said, I wish to become the queen of the geriatric set. It's not I and why not? Right? I'm 78 years old. And I can do this. And I can go out there and talk to other 78 year olds, and say, You know what, folks, this can be a journey of a lifetime, if you allow it to be, right. And here's some helpful hints of how to not only care for your loved one, but care for yourself. In the process that is so important, the caregiver has to take care of himself or herself. Otherwise, you cannot be useful to the person who needs you. 100% 100%

Susie Singer Carter: 38:43

I'm searching my notes here because you use the term about your book, and about, and it was a musical term that it's a German term late.

Unknown: 38:53

It's more like motif like horses.

Susie Singer Carter: 38:56

Can you tell us because I love that so much.

Unknown: 39:00

I said that the light motifs of my life became basically communication and music. And what light motif means is the running thread the through thread of your life, and I never abandoned the music, and I never abandoned the communication. Those are the threads that have have been my cushion in life. And the air cushion that I have floated on.

Susie Singer Carter: 39:27

Wow. I love that. I love a good thread. I think filmmakers Don and I are filmmakers and and writers and and we you know those are those are those are the those are the gifts of your stories you know is that are those incredibly powerful threads that that resonate and transcend everything

Unknown: 39:49

this Absolutely. When I started writing I started with the idea that this was going to be about Alzheimer's Lewy body dementia, dementia in general and Lewy bodies specific about caregivers. And I was I front loaded at all with all of this. And then a very wise editor looked at me and she said, You know, I know what you're trying to do. You're trying to avoid the words I may in mind. However, if we don't care about you, we are never going to care about the disease that you want us to care about. Right? So go back to the drawing board, and put yourself into this book. Which is probably the most challenging thing I've ever had to do, which is go like this, you know, okay, I'm ripping myself open. Right? Warts and all right, here's my story. Right. But only because it will bring you to where I want you to go, which is knowing about dementia, the umbrella, all the spokes that come off of that Alzheimer's, Lewy Body, vascular dementia, frontotemporal all of those things, and then knowing what to do as a caregiver, right.

Don Priess: 41:06

And from a human perspective, because, you know, the informations that is similar to our documented we're doing, we could put out all this information, and it's like, and so what, but it's got to be, you have to have the spine or have the heart and the personal story, or no one is going to care.

Unknown: 41:23

Exactly. You have to laugh. I mean, you know, you just have to not be a sad journey where you're just weak through the whole thing. You have to laugh, you have to have compassion, you have to have the joy, because it's all there. It's all part of it. You can't separate it out, you know, just angst. Yeah. Oh, that's part of it. I mean, let's let's be realistic. But that's not all of it.

Susie Singer Carter: 41:47

No, and that's angst is part of every kind, every part of our life, there's angst. And, you know, this is just a new, you know, this is a different kind. And, and it's hard. And, but but we but we can we can, we can do it. We have we can do it. If we stay, we stick to it.

Unknown: 42:08

Yes. And also, there are organizations that are so helpful. In the area of Alzheimer's, for instance, caring kind, is a phenomenal organization where I went first actually, I went to them, they're located in New York. And they offered all these free classes, about dementia, about caregiving about how you treat people, I learned so so much. And they in turn introduced me to an organization called the Lewy Body Dementia Resource Center, which is just what it sounds, it, there are resources, people who will help you navigate and support groups and everybody needs that to some degree, you're not going to do this as a solo act. Now doesn't work that way. And yet, people that you you, perhaps that thought you could count on some family members, maybe real close friends, some of them will be there for you 1,000,000% others for whatever reasons, they have, namely, fear can't be there. And somewhere along the line, one has to learn to forgive the fact that they can't be with you. Because they can't

Don Priess: 43:23

know, I think sometimes I think that comes often from people who don't know, how they don't know what to say to you. They don't know how, how should they deal with you? And so they just, you know, it's okay, I'm just not going to deal with it at all. And so how do you coming from me? Let's say you're in the midst, and a friend who does not know how to talk to you. They don't know, do they do want to talk about it? Do you not want to talk about it? What can you tell those people? Oh,

Unknown: 43:50

done? That's such a great question. I think first of all, and I'll go firsthand, into this. When Nikki was diagnosed, I said to him, and obviously at the beginning, you know, everybody's very lucid, we're not in trouble yet. We're just, you know, the wonkiness, here and there, but not real trouble. And I said, Nikki, let's make a decision together, shall we tell people what this is? And what you're going to be going what you are going through what you're going to be going through, so that we don't have the little whispering behind our back of people saying, you know, what's wrong with him? Because one day, as I mentioned, to look perfectly 100% Nicky, and the next day he won't. And so we made the decision to tell people what was going on what could be expected down the road. And by doing that, it took a layer of fear out of it. Number one. Secondly, then people weren't afraid to be with us. And I would say quietly or not in front of Nikki. Look, when Nikki gets stuck for words when he's having a problem. Just sit quietly. Don't try to finish his sentences. he'll come, he'll come back. And we'll continue. Or I'll interject a word or two, which we'll bring him back, we'll work this as a duet, or a trio or quartet, we can do this. And that's what we did, I would never have more than four people sitting at the table, including the two of us and to other people. Too many people confuse the issue, I don't do that. You, you when when you would go into a social situation, I would make sure that somebody there, if I had to work, for instance, in a gathering, in something I was presenting, but I wanted him to be there for the joy of being part of it. friends would come over amazing friends, usually younger friends, young people in the 30s would come over and surround him so that he'd be protected. And they would look out for him. You know, this is what good friends do. This is what you set up. Right? People fret and give them permission to be part of your life. Right and not to be afraid of it. And you can't do something wrong. It there's nothing that that's wrong. If you're feeling you say it, if you're feeling it, you act it, you step in, you step up to the plate.

Susie Singer Carter: 46:17

Yeah, no, I agree. I

Don Priess: 46:19

mean, yeah,

Susie Singer Carter: 46:20

we've kept, we've kept these diseases hidden. And that's why most of us have been Sucker Punched when it happens because they have been so hidden and there's been so much, you know, marginalization and stigma attached, because Alzheimer's was demented. is, you know, these terms demented or, you know, senility, and and which is equated with, you know, less than not good enough. And

Don Priess: 46:53

crazy.

Unknown: 46:55

Oh, yeah. You know, I actually had a nurse at Columbia Presbyterian Hospital, she shall remain nameless. But when Nikki had his heart surgery, she looked at me and she said, I'm not releasing him. And I said, why not? She said, Because I think there's something wrong. Now. She was right in that, but her manner was so autocratic, so awful. And I said, What is it going to take to release him because he needs to get out of here. And she said, a psychological exam. And I said, Fine, bring it on. The the psychiatrists came in, and he said, there's nothing wrong with this man. He was wrong. But there was, but nonetheless, about two or three months later, we encountered the same nurse who happened to be walking through our cardiologists office. And she looked at Nicki was in the men's room, and she looked at me and she said, how are you? Fine. And she said, Where is he going? That kind of? Yeah. I was incensed. But just what you were saying, Don, you know, crazy. He wasn't crazy. He had a neurological disease. Right.

Susie Singer Carter: 48:07

Right. That's not being coming

Don Priess: 48:09

from a nurse.

Susie Singer Carter: 48:10

But this is the prevalent, but this is why we're doing our documentary, because, because everything has been kept, you know, it's been pushed aside, it's not looked at it. It's not pretty, it's not sexy. It's not, it's, it's not youthful. And so it becomes it becomes you know, you it's put away in a closet. And so when you are faced with it as a caregiver, or as the person who is being who is, you know, has been overtaken by this, this disease, then we are left to figure it out on our own, more or less, you know, even doctors don't really, there's not a lot of specialists, there's some. And so it needs to be more, it needs to be more open. Children need to be exposed to it. So they're not afraid. Thank you for saying

Unknown: 48:59

that. Because I had two very young friends ages 12 and 14, who came to visit me with their mom who is in the medical profession and and we spent three hours over lunch, two little boys. And they said to me at the end of lunch, would you do a podcast with us? I said, Sure. Because we'd like to help promote your book said they, Oh my God. No, I had seen a I had seen a three minute video that they did on ALS, which was cartoons. They had done it all. They were remarkable. They're very bright children. Obviously. They put a podcast together with me. They did it. They wrote the questions they interviewed. They commented on my answers. It's 26 minutes on Lewy body dementia. I have to tell you, it is one of the most exciting things I have ever had the privilege of doing with a 12 year old and a 14 year old. Why? Because they did it for children their age. Love

Susie Singer Carter: 49:57

it. I love so much How, how

Unknown: 50:01

young is too young to probe this? They said, Well, you have to be eight years old or over to get it. And I thought, Wow, very

Don Priess: 50:12

specific.

Unknown: 50:14

So they have a YouTube channel called simply brain. And they had these two now, pieces on their YouTube channel. And it's remarkable. I

Susie Singer Carter: 50:25

love it. I need to talk to these boys, too, because

Don Priess: 50:29

yeah, I love it. Yeah, because ageism and ableism, out there is, is rampant, and it's coming. And, and that's, it doesn't necessarily start with children, because they just don't know. I mean, it's more coming from the adults. But if we can educate from the beginning, from the very beginning, you know, that the, you know,

Unknown: 50:49

they don't have to understand the ins and outs of the disease. But when what they can learn is to be patient, what they can learn is to be kind. Oh, yeah, they can learn is to be compassionate. And loving that a hug means more than anything to an elderly aunt or grandparent who's dealing with some issues, right? You know, this is what they can learn.

Susie Singer Carter: 51:12

No, absolutely. When my mother was was in a facility, and there was children that were there with the caregivers that worked there, they would come on the weekend, and those kids that there was a couple of five year olds, a couple of six year olds, and they were so used to the resonance, they had no problem with the repetition, the you know, the the hallucinatory kinds of things, they would just they would go right into action, like it was part of their day, it was normal, and they would help Jack go fine, you know, whatever he needed, and they would defuse the situation, it was very instinctual. And, and it was, it's very beautiful. Whereas I remember bringing my friend to visit my mom with her little girl who was three and four, three or four at the time, and she was so nervous and scared because she hadn't been around older people or people who had, you know, acuities and

Unknown: 52:10

you, you have to be taught fear, don't you? Yeah, fear, you know, come in with fear. And as I remember, in Nikki's last week of life, he we had a three year old godson at the time, and Andrew loved Nikki, and he would come in with Hello, pirate, Nikki and Nikki would say, Hello, Pirate Andrew. On this particular day, a week before Nikki passed, Andrew came in with his usual greeting, and recognize that Nikki couldn't answer and went and knelt at his feet and hugged his knees, put his head on his lap, stay that way for a good minute or two, and then went and played very quietly, next to him by himself. Now that child was taught to be open, not to be fearful. I got bless his mother, who's our niece, Amanda. And I loved her for that, that she would bring the child in knowing that it would be meaningful to Nikki on some level that Andrew would never forget it. And Andrew hasn't forgotten it. days now almost seven. And and he still will say things like he'll bring me something, a drawing that he's done or a piece of art and he'll say, Do you think that I maybe will become an artist like Uncle Nikki? Totally unprompted? But it remembers,

Susie Singer Carter: 53:33

it's like dun dun knows what I'm going to say. Because when my mum was going through her last year to the last six months last year, and my I have my granddaughter who was two, who had only seen my mom because of COVID, on on Zoom, right? And when we finally got to go get her in that room, and my mom was a bit fragile at the time. And Eden was two years old and Eden, my mom wasn't speaking at the time. And she climbed it up into the bed very gently. And she would call her nanny, and she, she laid her head on her shoulder and was patting her and going, Oh, Nanny, Nanny, Nanny, Nanny nanny, and then she would look back up to mix check in with her face to see what nannies face was doing. And then my mom would go to her and then she would go to my mom, and then laugh and then lay your head down and then look back up, lay your head down. And the two of them had a whole conversation. That saying a word not saying a word. And to this day, my little one who's turning for next month says tells me all the time that nanny Normie talks to her and she's around and she knows and what does she do it she tells me and she didn't know she was a singer said oh, she sings to me all the time. And she says I love you.

Unknown: 54:54

You know I I do believe that there is communication that we can't explain. It's there. And God bless that little one. And you just said granddaughter Yeah. Wow. No way in the world would I guess you had a granddaughter.

Susie Singer Carter: 55:10

Oh, thank you bless your heart I have to I have one just turned one this weekend. So I have two little beauties and and I have two daughters. And so now we have four girls and boy, all the men in our life are in trouble. But this little one Eden, you know her like you said with with your, your nephew, there is a connection that will be there. Always. And, and that's what I wanted to you know, I want to communicate that to everybody that how important is those last months, days, weeks or year, whatever it is that someone has left in their life is so important to them. And to all of us, because we are all terminal. And we're all on borrowed time. And we don't know what tomorrow brings. So we we deserve to be able to have the quality of whatever's left. And whatever, you know, those are special moments. And had I not been advocating for my mom, she would not have had that moment with my with Eden and nor would Eden have those lifelong memories.

Unknown: 56:21

Exactly. And I love your use of the word. We it's always we and our because I to embrace that width. It's our journey. It's our illness, yes, it's not his illness or her illness. It's we because we're all in this together. And that's incredibly important thing to remember. Thank

Susie Singer Carter: 56:45

you, I agree with you on that. I have to share my short film that I did about my mom that Valerie Harper plays her it was a short film. And it was basically a day in the life of when she lived with me. And it was that period of time and Alzheimer's where it you know you there I say that she's straddling the fence of staying in her old life and embracing her new and I felt very proud of of walking her over that bridge, and being able to be there with her, which I believe was the hardest period of time for her emotionally. And I wanted to show the joy that we found together and how we we stumbled together and found them. And Valerie Harper played it. gorgeously. And with such soul and such humor, and, and, and heart and everything. And so that was you know, I told I would tell my mom, I said Mommy, I'm doing a film about you. Why? You say because you're incredible. And she go Well, that's true.

Unknown: 57:50

And the humor never left? Yep. So yeah, just love it. I just, you know, and for those of us who have the privilege of continuing the memory of those people that we were dear to him, and they to us. It's just it's such a wonderful journey to be able to continue.

Don Priess: 58:13

And it should be an honor. It's an honor to to do that. You know, for for them. I mean, you know that what, what kind of what's the better best gift you could possibly give them that legacy?

Susie Singer Carter: 58:25

Legacy legacy? Legacy is huge. Yeah. Wow, I just love you so much. You're such a great woman. You're so very sweet. Yeah, you are you you're so you're so unique and so, so special. And I'm proud to know you so thank you for being like shells are shaped. Thank

Unknown: 58:44

you. Thank you so much, Don. Thank you. It's it's a privilege to be here and I I hope that I didn't see it coming scenes of love loss and Lewy body dementia will be out there to help others know that they are not alone.

Susie Singer Carter: 59:01

Definitely, to you, right. Yeah. Highly recommend this book. And you only know have to know by listening to this woman, that you're going to get the real story and the real love and the real journey and nothing's going to be held back and it's going to end it's a beautiful trip. So you know, I thank you for writing it. And, and sharing it with all of us. Did we leave anything out that you wanted to say that we might have missed?

Unknown: 59:29

No, just please make love the centerpiece of your life. You'll never regret it.

Susie Singer Carter: 59:37

I had to hold back tears like 17 times dawn. Like yeah, I'm gonna touches my heart so much. I can't even take it. I love her so much. Just

Don Priess: 59:48

I mean, not only I mean her heart, her class, everything her story, everything about

Susie Singer Carter: 59:54

everything about her. I just want I want to know her. I want to talk to her so much and I want to hear her sing Holy Moly, exactly. Holy moly. Oh my god that her story with? Well, we won't give it away because that was stuff that we talked about after we stopped but read this book you all and it's got to be a movie, it's going to be a movie that special. It's that's,

Don Priess: 1:00:20

it's tremendous and different to because you know we you know we talk about Alzheimer's all the time and Lewy body is so different. I mean, it's so similar in many ways, but so different it

Susie Singer Carter: 1:00:32

can be really brutal. There's parts of it, you know, I know that can get very brutal because it hits the physical really hard. And yeah, but anyway, this was great. I was so excited that we had her and someone else who also saw the value and the magic of music, what can be better and magical love, like she said, right?

Don Priess: 1:01:03

And there's only one reason for that. And that is that love is powerful. Love is contagious, and love conquers all. So we thank everybody for watching, listening. Please like us and subscribe and do all those fun things share. And if you if you have the mind, we're still raising money for our documentary, No Country for Old people. And we'd be happy for you to be part of our community and join in on that too. So,

Susie Singer Carter: 1:01:31

have a good one. You all tucked in. We'll see you next time.

Don Priess: 1:01:34

Take care. Bye bye