Season 7: Episode 185

Episode Overview:

Today we delve into matters of the heart and the harsh realities of dementia as we discuss "Love, Loss, and Lewy Body Dementia." Our host Wendy Green is joined by guest Mary Lou Falcone, who shares her deeply personal journey of caregiving for her husband, Nicky Zann, through his battle with Lewy Body Dementia.

Mary Lou opens up about the challenges they faced, from Nicky's initial symptoms and diagnosis to the daily realities of managing this complex disease. Today's talk highlights not only the emotional toll but also the strength and resilience required to navigate the shifting dynamics of love and health. This episode is not just a story of love and loss but also of caregiving and resilience in the face of life's unpredictability's. Stay tuned as we explore these poignant themes and offer insights that will touch everyone who listens.

Episode Takeaways:

1. Gain insights into the 2nd most common, progressive dementia; Lewy Body Dementia
2. Receive personal coping mechanisms for caregivers managing a loved one's decline while maintaining their dignity and independence.
3. Recognize the importance of proper diagnosis, access to specific resources, and community support to manage Lewy Body Dementia.

Links:

- **Educate Yourself and Others:** Listeners are encouraged to visit the Lewy Body Dementia Resource Center website and Mary Lou Falcone’s personal website to learn more about dementia.

- **Support and Participate:** Wendy encourages donations and participation in the annual Walk to End Alzheimer's to support Alzheimer's and dementia research and aid families impacted by these diseases.

- **Subscribe to stay connected:** Subscribe to the weekly newsletter to learn from articles, what is coming up and reflections of our host, Wendy Green. Go to the website and click on Connect with Us.

- **Read and Reflect:** Mary Lou’s book, "I Didn't See It Coming,” is recommended for those seeking a deeper understanding of love, loss, and coping with dementia, enriched with personal anecdotes and illustrations by Nicky Zann.

Well, hello and welcome to hey Boomer. My name is Wendy Green and I am your host for hey boomer. And hey Boomer is the podcast where we go beyond the surface, sharing real talk about aging well, so none of us want to lose our mental capabilities. That's a given, right? And every year, I lead a team for the walk to end Alzheimer's. Finding a cure for all types of dementias would benefit all of us. But today's episode is not about Alzheimer's. Although we will be talking about dementia. The story for today's show is of a loving couple.

People refer to them as the golden couple, the fun couple, the couple that you can count on. Mary Lou Falcone was a publicist for some of the best known classical performers in the world. People like Van Clyburn, Renee Fleming, Gustavo Dudemel, and even James Taylor. Nicky Zann, her husband, was a popular 1950s rock and roll musician who became a world renowned cartoonist, illustrator and painter. And for 30 plus years, they lived a charmed life. And then all of that changed. In today's episode, we'll talk with Marylou about the life she had with Nicky and the turn their life took. Starting in 2017, she details their story in her book.

I didn't see it coming. We'll hear from Mary Lou in a minute. But as I mentioned in the intro, I lead a walk to end Alzheimer's team and I want to give all of you the opportunity to donate to our walk to end Alzheimer's team. It's very simple. You go to act.AlZ.org/goto/Heyboomer and you can join our team or you can donate to our team. But all of the proceeds of the walk to end Alzheimer's goes to help with Alzheimer's research, as well as supporting families and family caregivers for those with dementia. And also, if you've not already, please subscribe to our weekly newsletter. You actually will get one newsletter Thursday that gives you all kinds of information about what I'm thinking about and articles that are relevant to what we are living as we are actively aging, as well as talks about my boomer banter and the Boomer believers.

And the other email that you will get is the Monday show links. So if you wanted to join us live on Monday, you'll get the show links for where we stream live on Facebook, LinkedIn and YouTube. Super simple. Go to Heyboomer biz and just click on the Connect with us button and remember that I love to see your comments both live and when you listen later on YouTube, Apple or Spotify. We may not be able to answer immediately, but I will definitely respond. And there very likely will be questions today for Mary Lou. And if there are, feel free to enter them in the chat, wherever you're listening from, and we'll do our best to answer them. So let me bring Mary Lou on.

Hello, Mary Lou.

Hello, Wendy. Delighted to be with you today.

I'm so glad you're here and, like, glad that we met. You know, I really feel like we have a nice connection, so.

Agreed.

So let's get started. And as I mentioned in the beginning, you and Nicky had a beautiful long term love affair. Can you tell us a little bit about that, please?

I would be delighted. So the year was 1973, and it was a glorious holiday season, Christmas time. And I went to a party, a knee side, swanky, gorgeous party. And I walked into the room and I looked across a crowded room and I could hear in my head the strains of Rachmaninoff playing. I mean, it was just very romantic. And I looked across at the mantel and there was standing the most handsome man I'd ever seen in my life, as I fondly say, think Alain DeLong, the french actor youth. And there was Nicky Zann in a three piece Saint Laurent suit with a bow tie, a rose in the lapel and an engaging smile.

Wow.

I looked over, he looked back, the fireworks went off, and we circled around so that we could meet and say hello, which we did. And up walked this gorgeous woman dressed exactly as I was dressed. And it was his wife, Mary Jo. So, Mary Lou, Mary Jo didn't go too far with the names. Okay, well, she was a delight as well. Beautiful lady, inside and out. And the three of us started laughing and carrying on and having a wonderful old time. And they, along with the person I had come with, took our plates of food, went into a different room, sat down, and we had our own little party instead of 100 other guests.

We decided, you know, we would do our own party, which we did. And as people do, they say, well, you know, we have to get together, we have to reunite. And they never do, but we did.

Oh, is that right?

We did. They would come to my home. I would come to their homes. They were probably their home. They were probably the only people who had heard me sing in those days. And because they came to a performance I did down at town hall, and we were wonderful friends for ten years.

Okay.

Then Mary Jo and Nicky amicably divorced. And at that time, thank goodness, it was amicable. There were no children involved and began calling me as he called me. I would find every excuse in the book to say, no, thank you, because I didn't want to betray my friend Mary Jo. But the sparks were still there. The energy was still there. The incredible feelings were still there. And one day I said yes to a date.

And during that date, we went to a lovely restaurant, came back to my apartment. Now, at this point, he is 40 years old. I am 38 years old. So we're not. I, in my most charming way, say, Nicky, would you like to spend the night? And Nicky says, no.

Oh, good for Nicky.

That's what I said. Because all of a sudden I saw Nicky was always the life of the party. He was fun. Everybody loved being around Nicky. But now there was a serious person who emerged. And I said, well, you know, you have been attentive for many, many, many years. May I ask why? The answer is no. And he got very serious and he said, Mary Lou, I've watched you with your various boyfriends, beaus for ten years.

You're charming, you're lovely, and when you're finished with them, you very politely say goodbye. Exit. I don't want to be that person. If you want to have a real relationship, call me. And he left. That exactly was my reaction. Wow.

Yeah.

I took a deep breath and I really thought about it overnight. Next morning I thought, you know what? This is. This is something that I have to pursue. I have to find out who this man really is because I thought I knew him. And now I'm finding there is a depth that I had no idea was there. And I phoned and I said, Nicky, Friday night, would you like to come over for dinner? And he said, yes, I would. He came with all the fixings, the steaks, everything for dinner. And he cooked.

And he cooked. He cooked because he had the impression that I couldn't cook. I mean, I can. I did, but that was his impression. I wasn't going to spoil it. You know, he cooked and he never left.

Wow.

1983. For the next 33, 34 years, we led a very charmed life. He was a phenomenal artist who had great success. I was building a public relations business, and it just grew and grew. We traveled. We had wonderful friends and great family and. And we were. We were blessed.

Yeah. And you. You learned how to have a real relationship.

A real relationship, which actually, Wendy, grew every single year. It started pretty fantastically, but it only grew. And that. That was very special. So I was very, very fortunate person.

Well, your book, I didn't see it coming. Really does tell that story. If I can show it.

Yes.

It really does tell the story of the love story between you and Nicky and how you had to come to terms with the fact that this wasn't just all going to be fun and game. So. Yeah, correct. Nice. Very nice.

So I want to say thank you for holding the book up, because what I'm most proud of is it says Mary le Falcone, but it also says illustrations by Nicky Zaan. And that that was a gift also to be able to do that, to take his illustrations and match each chapter with an emotion from an answer deck game that he had created years ago. And so the drawings existed independently of the game, and I just took them and matched them with each chapter, and it worked. So it was a gift. It was a gift. And we could do it together because one of the things we wanted to do in retirement, which we never got to, but was to write a book together, so posthumously, we have.

So now you've done it.

We've done it.

So. So tell me, you know, you're having all these wonderful experiences, travel and success. Tell me when you started to notice things got a little astray.

Yeah. About 2016. In the fall of 2016, I started to notice a lot of fatigue from Nicky. A little bit of anger, a little bit of paranoia. None of this was present before. And cognitively, just forgetting things, not remembering, grasping for words. The other thing I noticed was that the handwriting was getting smaller, and it was taking anywhere from 20 to 30 minutes to write one check.

Oh, really?

Yeah. And that kind of made me go, oh. But, you know, as we all do, we can find all kinds of reasons for things being not quite right. Oh, it's this time of year. Overload, sensory overload. Going to too many events, you know, all of this. And we fast forward a couple of months to the end of that year, the end of 2016, and we're in Vienna again. Very glamorous, you know, wonderful holiday time, Vienna.

All the lights are twinkling, and. And Nicky is fatigued. I'm there because I represented the Vienna Philharmonic and Gustavo Dudemel, who was conducting their New year's concert. So we were there for work, if you can call that work, and also for enjoying friends and wonderful colleagues. So there we are in Vienna. Nicky fatigued. I chalk it off to the end of the year. One evening, we have a dinner date with some friends, and we're all coming from different locations, so we decide to meet at the restaurant.

Now, this is a restaurant that was one and a half blocks from where we were staying. It's a restaurant we had frequented quite a few times, so Nicky knew it. And 08:00 came, and Nicky was a person who was always early or absolutely on time, but never a minute late. 45 minutes passed. Oh, my gosh. And I was getting more and more tense and nervous by the. By the minute, I'm sure. Finally, I said to our friends, you will have to excuse me.

I have to go out and see if I can find Nicky now where I thought I was going to find the needle in the haystack in Vienna. I mean, really, what a foolish notion. But I had to try. Now, it's been said, people have said, well, didn't he carry his cell phone? Well, no is the first answer. But even if he had been carrying his cell phone, it wouldn't have been turned on, because that was Nicky. He didn't pay attention to those things. As fate would have it, I walked toward St. Stephen's cathedral on the main drag.

Got maybe a block. And who's coming toward me? Nicky.

Oh, my gosh.

Thank you to the powers that be sure. This is another gift. As he approached me, I looked into his eyes, and what I saw was fear. And then the anger exploded. And he looked at me and said, you. You did not write down the address.

Oh, gosh.

And I went quiet. I don't know, Wendy. I wish I could tell you what. What triggered it, what the mechanism was. I don't know. I just saw the fear and I went quiet. And I said, Nicky, it's my bad. I am so sorry.

Please forgive me. We went to the restaurant. We joined our friends. They were relieved. I can't say it was a pleasant evening because it was a tense evening, I bet. Embarrassed?

Yeah.

But. But he was safe. He was safe. We came back to the states. He was a very, very meticulous person about his health. He was a. A workout fanatic. He had a great diet.

He took himself to the doctor twice a year for general physicals. This was one of the physicals in the month of January of 2017. Now goes in and he says to the doctor, you know, they're kvitzing because they're friendly. And he says, so, al, tell me what happened to that calcium score test you had me take six months ago? And the doctor says, oh, let me have a look. Nick looks and says, oh, my goodness. We're getting you to a cardiologist now because the scores were off the charts.

And the doctor hadn't noticed this before.

And the lab hadn't flagged it, and no one had flagged it. Fast forward the cardiologist who says, after the stress test and all that good stuff, and they said he had had a heart attack somewhere along the way. I knew exactly when it was because a couple of weeks before, we had been in Paris. And that one evening I sensed sweating and profuse sweating, profuse chills and heaviness in the heart. But next morning, he was fine. But that was a heavy wow. And the cardiologist said, look, not to worry. Probably medication will correct whatever is going on, or stents at the very most, and we have to do an angiogram.

I walked out of that appointment and I thought, you know, I don't have a good feeling. I just. I just don't. So Nicky had asked me for 34 years, each year, to marry him. And I had said, no, we have a great thing going. We're so happy. We're so content with our lifestyle. Why spoil a good thing? But this particular day, I proposed to Nicky.

And I said, Nicky, will you marry me? Typical, you know, offhanded fashion. Said, well, Mary Lou, I mean, it's so sudden. What's your hurry? And I said, well, we're not getting any younger. We were in our seventies, early seventies. I said, and we're very much in love, so why not? What I left out was, I'm frightened. Yeah, I want to be able to protect you. But that part I left out. Yeah.

We got married on the 13 February. And my quip was, well, doesn't everybody, you know, do this just before Valentine's Day? Right. And on Valentine's Day, we went up to the hospital for the angiogram. Again, my quip. Well, doesn't everybody get their heart checked out on Valentine's Day? How appropriate to me, right?

Very appropriate, yes.

We're, you know, laughing and holding hands and just, you know, thinking, this is going to be very routine. The very, very routine turned out to be the necessity of having triple bypass surgery, which was the very next day. We never left the hospital. Triple bypass surgery triggered all kinds of things that we didn't see coming. The first was that hallucinations, which had been part of the aftermath of the triple bypass surgery, continued.

Do you think that was part of the stuff they gave him to go to sleep?

That's right. The anesthesia. Anesthesia, very often with triple bypass surgery, creates enormous hallucinations. I mean, wild, horrendous stuff. And it was. But I thought it had stopped. Nicky didn't tell me that these things were continuing. That's number one.

The energy level kept being depleted. It didn't come back, the confusion was still there, and most alarmingly, he kept losing weight. Now, Nicky was a very thin, trim, fit person, and he couldn't afford to lose 1oz much more pounds.

Yeah.

And we were told repeatedly that this happens, you just have to wait, be patient a year or so, and you'll see the difference. And a year or so in, we didn't see a difference. It got worse. And so I changed physicians, and our new physician said, well, let me do all the testing, which he did. And about six months into this new regime, I said, I think we need a baseline MRI. Now. We're into 2018, the fall of 2018. And the doctor says, you know, let's wait a little bit longer.

It could be just age.

Don't they always do that?

Right, they do, but I said, well, all right, but I'm watching vigilantly. We went to Stockholm. It sounds like we're traveling a lot. And we did Stockholm because I was running a very big event there, which included the king and queen of Sweden. And so it was. It was a big deal. And Nicky was invited to come with me because it was a special occasion, and the people who were running the foundation that I was part of had invited him. Fine.

We get to the hotel in Stockholm, and Nicky can't find his way from the front desk to the room. The days are spent going to breakfast together because he couldn't find his way down there, sleeping all day, so that at night he could hop to. And they call it. They have a name for it, medical term, which is showtime. And it gets all the energy together. Harnesses, focuses, and he's on. So nobody knew anything was wrong by the time we got back to the States. And this was very, very disturbing and worrisome, I said to our physician, time for an MRI.

He said, you're right. Absolutely. In early 2019, they did the MRI. It showed a phrase, which I particularly hate, which is age appropriate deterioration, which is nonsense. And so my next question was, what next? And he didn't miss a beat. This physician said, I'm sending you to another hospital with the best neurologist I know. Oh, good. That neurologist hit it out of the ballpark.

He did a cognitive test. He watched Nicky walk, and he said definitively, and this is so unusual, he said, this is Lewy Body Dementia with parkinsonian aspects. So Parkinson's and Lewy Body. And he did a couple of follow up tests, and he again said on March 1 of 2019, this is Lewy Body Dementia with Parkinson's. Nicky knew what it was. A friend of ours had died of it a couple of years before.

Is that right? I was going to ask you how you both responded to that kind of diagnosis.

Well, we responded calmly. We walked into the waiting room, and Nicky said three things to me. The first was, I've always wanted to meet your father, and now I'll have my chance. My father died in 1981, so that was Nicky's way of telling me he knew he was dying. The second thing he said is, Mary Lou, we have had a great run. We cannot be sad. Wendy. That's a mantra that every morning of my life I remember.

Wow.

And the third was a request. And the request was, please, when the going gets rough. And it will help me to keep my dignity.

Oh, he was so aware.

So aware. And that's. That's Louis body. With Louis body, you go in and out of you sometimes don't know where the person standing next to you is, and the next day, you remember everything, and you're back to normal. It is the rollercoaster disease. It goes in and out, and that makes it incredibly difficult. It goes in and out as it's wearing you down. It's cognitive ability that gets worn down.

It's. It's your. Your motor skills that get affected, especially when Parkinson's. In Parkinson's is involved. It's. It's. It's tough.

And the hallucinations continued. Right. So it wasn't just the anesthesia that was part of Lewy Body also.

That's right. So what separates Lewy Body also from Alzheimer's disease is its hallucinations are our hallucinations. And they continue with Nicky, it was both visual and audio hallucinations. So he would say to me, do you hear the voices coming out of the faucet?

Oh, gosh.

And my answer was no. But I know you do. Do you hear the music coming out of the pillow? No, but I know you do. So I could affirm while still telling the truth.

So you were. I mean, there's a lot of things here, Mary Lou. I mean, first of all, you were such a strong advocate for his finding out what the problem was. And, you know, so many people, I think, forget that the doctors don't know everything, that we have to continue to push and ask for that.

Oh, yes. And in this case, I give the neurologist an. A gold star for being a genius diagnostician, because people do go for years trying to get a diagnosis and never get it. Robin Williams, case in point, all the resources known to man, and yet they never got that it was Lewy Body Dementia. Only in autopsy did they find that it was one of the worst riddled brains with this disease, with these rogue proteins.

Wow.

So, yeah, we were lucky on that score. But where it wasn't so terrific is that when I asked in subsequent visits, what can I expect? What can you tell me? He went stone silent.

The physician did.

He would answer nothing. This was the neurologist. And so I had to cobble together and find places where I could go, where I could get information. And it was a trip. And thanks to the actor David Hyde Pierce, who was a friend, is a friend I found caring kind, which is an Alzheimer's organization primarily. But they introduced me to the Lewy Body Dementia resource center in my lifeline. So I am so grateful to all of these people who pulled their knowledge and their resources and helped me to find a way. And that's one of the reasons that I wrote this book, because nobody should have to cobble it together.

You should be able to find answers, to find the trajectory, to find ways of coping well.

And I want. I want to get into that ways of coping. But I was so surprised when I was researching this, that Lewy Body Dementia is actually the second most common dementia after Alzheimer's. And yet people don't. I've never heard of it. They don't know how to spell it. And like you said, they don't. Nowhere to find what to expect, what the resources are.

So. And just what you said, it's the second most progressive dementia after Alzheimer's disease. It affects in this country, the stats, which are low because they're old, is 1.4 million people worldwide. It's over 11 million people. So it's not rare. It's basically not recognized, but it's not a rare disease. And as we all know, Alzheimer's as dementia. Dementia is the umbrella term.

Off of that term come the spokes. Alzheimer's, Lewy Body, frontotemporal, and on it goes. And that everything is Alzheimer's all the time.

That's right. That's all you hear?

That's all you hear. And while that's terrible, it's a horrible disease. And again, you wouldn't wish it on your worst enemy, but it's not the only form. There's also, just to complement, Kate, the issue just a bit more. In autopsy for Alzheimer's, they find that anywhere from 40% to 80% of those brains autopsied also have Lewy Body present. So you can have both at the same time.

Yeah, I see a couple of comments here that are really beautiful. Dar says, why this is more interesting to me is because dear Aunt Mary Lou had, and after a three year rapid decline, died from Lewy Body Dementia. Her aunt Mary Lou. And Kevin says, in spite of a devastating diagnosis, Mary Lou's spirit and story is beautiful. I dealt with many residents with Lewy Body Dementia, and it's a heartbreaking disease. There's a reason dementia is called the long goodbye. Blessings and comfort to all living with dementia. Thank you, Kevin and Doris.

Yeah, absolutely.

So talk to me. I mean, you were dealing with this during the pandemic, so you didn't have home health aides, you didn't have a support group. What were your coping mechanisms?

Well, just at the time that I really needed to import professional help in caregiving, the pandemic hit, as you said. So now we're a year into Lewy Body. As I mentioned, it was March of 2019. The diagnosis now we're in March of 2020. The pandemic hits. Now, for us, the pandemic was a blessing. Sounds like a strange phrase.

Does.

But it was. It was because I could devote my full attention to Nicky. We were sequestered. We couldn't go out. We couldn't socialize. I couldn't bring anybody in. And so it was Nicky that I paid attention to 24/7 when he needed it, I would do things like watch him get dressed in the morning. Now, as your motor skills and motor functions decline, as your cognitive ability declines, so does your ability to do simple things like brush your teeth or button your shirt.

And I would watch, and I'd watch kind of out of the corner of the room, not overtly watching, but I watched to see if he could still button his shirt. And he could. Could he still put his trousers on? Yes, he could. Was he able to put his underwear on first? Yeah, he could do all of this. So this was fine. And I vowed that as long as he could do it, I would not interfere unless he asked for help, because I didn't want to take the dignity away. That was the beginning. So important.

A showering. I would. I would allow him to go into the shower by himself, but I would stand watch just in case, you know, do it, things of that nature. As this progressed, you know, I'm still working, so I am still working. So how do you. How do you function? Well, I could work at midnight because he was sound asleep. I could come over to my office, which was across the hall from our apartment. I could monitor, but I could work.

And nobody cared what hour I was working. I could get the work done. So that was wonderful. We could plan our days. We could go out and walk. And we did because, COVID, you could walk. You could go on the streets with your mask on, and as long as you washed your hands and all those good things, we could do all that. But then it got to the point where he couldn't walk.

Well, it got. It got a little bit dangerous because walking home a couple of times, we almost never didn't make it. And I couldn't carry him. No, it was still too heavy to carry. I could lift him, but I couldn't carry him. And so I determined that we needed to get the chair with wheels. Now, I knew how he felt about wheelchairs. It was a.

No, absolutely not. We will not do this. So I told a little lie and I said, Nicky, our doctor has gifted you with a chair with wheels, a transport chair. And he sent it over and maybe we should try it out. And so we left the building. This was in June, about a month before he died. And we left the building, both of us wheeling the chair from behind. Oh, yeah.

Got to a little park, because, again, it's dignity, right? We're in a very large building. We have doormen. People see you leaving, you don't. You want your dignity intact. I get it. I get it. And so we together wheeled the chair out, went to a little park nearby. And I said, oh, I'm so tired.

I just. I need to sit down. And I sat on the bench, and I said, maybe you should sit in a comfortable chair. It might feel good. So he sat in the chair, and we spent a few minutes. I said, well, I'm refreshed. Let's get up. Let's walk again.

I said, do you want to walk with me behind the chair, or do you want to give it a spin, see how it works? He said, I think I'll stay in the chair. So we walked down to the river. We're a couple of blocks, three or four blocks from the Hudson river. We walk down to the river. We were able to get back comfortably. And I said, a couple of blocks before we got back, would you like to get out of the chair and walk into the building? And he said, maybe. As we got closer to the building, he didn't ask to walk in, and I didn't ask again. And as we walked in, the doormen were great.

And he said, oh, Nicky, so good to see you. Hey, man, how you doing? You know? And from then on, we could take the chair. It's a process. It's a process again. Dignity. Now, is it easy? No. Do you. Do you lose it? Upon occasion? Every caregiver loses it, I guarantee you.

What do you do when you're at your wits end? You've had it, you know, beyond and you want to scream.

Yeah. What do you do?

You have a pillow at the ready in another room to which into which you scream. And I recommend that the words heck, darn and damn don't quite do it. It's only the f word that works. Now, that's not part of my normal vocabulary. I don't particularly like the word. I think it's well overused. But in this instance, when you scream and, excuse the language, fuck. Into a pillow, the endorphins, something happens.

Everything goes calm. And then I would take a lavender sachet and I would inhale a nice, deep yoga breath, inhale the lavender, and I could walk back into the room with a big smile and say, so, Nicky, what about having a sandwich? How about we go for a walk? Whatever it is. But that's what you have to let it out. As a caregiver, you can never, ever avoid being upset. You can't. But it is so important that you don't show how upset you are to the person who's going through hell, because that person may not be able to articulate, they may not be able to verbalize anything, but they feel. Make no mistake about it, they feel your energy, they feel your vibrations. And so when it got to the point where I would say, Nicky, do you know who I am? And he would say, no, but that's all right, because the calm of the voice and the calm of the vibrations, and you have to work at it.

But that calm allowed him to feel safe. And at the end of the day, anybody with dementia or any chronic disease needs to know that they're safe, that they're protected, and most of all, that they're loved.

Oh, Mary Lou, you are, as Steve here says, you're a very respectful caregiver, but you're more than that. I mean, what you are sharing with us is certainly not easy and.

No, but it needs to be shared. And caregivers need to know you're not alone, folks. If you're out there as a caregiver, you are not alone. And it's okay to lose it. It's okay.

It's normal, right?

Yes, it's normal. And you must forgive yourself. And at the end of whatever journey you're on, pat yourself on the back and say thank you to yourself for being able to deal. And if you believe in something larger than yourself, then. Thanks. There also.

Well, before I let you go, tell us a little bit about Nicky. He was a rock and roller. He was an artist, a cartoonist. Tell us a little bit about Nicky.

The way I'd like to start is to quote what came in from about 250 condolence letters after Nicky passed. And almost everyone to a person said the same thing. Nicky was so special because he made each of us feel so very special in this world. That was Nicky. He was a giver, he was a sharer, he was an entertainer. He was the best person I know. And as he said to me, we are soul mates. He knew it way before I knew it, knew that we connected on a very deep spiritual level as well as every other level.

And he was smart. He read constantly. He spoke French and he spoke an archaic French. Our french friends got hysterical. We loved to hear him speak because it wasn't modern French, it was archaic French. But he loved to travel. He loved to travel, especially to Paris. He was a great artist, but he never talked about his art.

He talked about his rock and roll days, because stages as Johnny Cash and Patsy Cline and Jerry Lee Lewis, and he knew them all. And. But he was 14 years old. Oh, and he retired from performance when he was 21 years old.

To take up art.

To take up artist. Because he said, you know this, I've done it and I've done it and I've done it and I'm just doing the same stuff. And that's not what I want to do.

Wow.

I want to make a mark in the art world. And so he switched careers, completely cobbled together his education, which was going to artists and school of visual arts, where he felt that he could get the best training he could get. And by the time he was 28, 30, he was a major player in the art world.

Yeah. Well, if you're interested in seeing some of Nicky's artwork, you can see it in this book. I didn't see it coming. Scenes of love, loss and Lewy Body Dementia. Now, I know that you're now working as an advocate for Lewy Body Dementia, so can you share some resources where people can find more information?

Absolutely. The very best website I know is the Lewy Body Dementia Resource Center website. And you would just go to lbdny.org.

Lbdny. I will put that in the show notes.

Lbdny.org dot. That website is just magnificent. It's got everything you could possibly want to know about Lewy Body Dementia. The organization was started about eight years ago by a woman by the name of Norma Loeb and her mom had Lewy Body Dementia for 18 years. That's very uncommon. Nicky's. Nicky's was less than two years. It was 16 months from diagnosis to death, probably one of the shortest in history.

But that's a great resource. Ok. Resource.

All right. Well, I will share that in the show notes as well as your website, which is Maryloufalcone.com. So that will also be in the.

Show notes and that would take you to a website that gives you access to the book. And if you are so inclined to order that book, it will give you an enormous amount of information about Lewy Body Dementia and dementia in general.

Okay. Okay, great. Well, you have been a wonderful teller of stories, and sharing your experience has been very impactful on me and to the people listening. So thank you for that.

And I thank you for the opportunity. And if I can have one last word, it's to the caregivers. Please know that you are not alone. We're all here for you and the resources are too.

That's important. Thank you. If you liked what you heard in all of this and you took a lot away, please leave comments as you have with the live show, but please leave your comments and rate and review when you're listening to the podcast. And let Mary Lou know what you took away through either your comments or going to her website and letting her know. Thank you. Also, I want to remind you that you can donate to our walk team, the Alzheimer's walk team, by going to act.alz.org/Goto/Heyboomer so that we can all help find an end to all of these dementias, which would be amazing. And connect with us.

Get our newsletter by going to Heyboomer biz and click on Connect with us. So before I tell you about next week's guest, I want to let you know that I will have some exciting news to share with you on Memorial Day. I'm going to be doing a short episode that day to tell you about it, so you're not going to want to miss it. Be sure you tune in. And May is Lyme Disease Awareness Month, among other things. May happens to be an awareness month for many things, but you know that I advocate getting out in nature and getting some exercise, and it's very healthy and stress relieving. But the little ticks, they seem to like nature also. And Lyme disease can be a very nasty disease.

My husband contracted Lyme disease and it was pretty scary so next week we're going to be talking to a woman named Dorothy Leland, and she's the president of Lymedisease.org dot. So we'll learn about how it could be contracted, how to prevent it and what to do if you think you've been bitten by a tick. So stay tuned for that. Each episode of hey Boomer is an invitation to listen, learn and apply the wisdom gained from each episode to your own life. The path ahead may not always be easy, but it's traveled best with shared support and insights like we got from our guest today. Mary Lou, my name is Wendy Green. I am the producer of Hay Boomer. And the music that you heard at the beginning was written and performed by Griffin Honrado, who is a student at the North Carolina School of the Arts and my grandson.

Thanks so much, Mary Lou, this has been a pleasure to meet you.

Thank you very much.