Former St. Paul Opera publicist shares her journey of caregiving through Lewy body dementia

A woman with a colorful scarf poses for a portrait.
Mary Lou Falcone is visiting St. Paul to talk about her book, "I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia."
Courtesy of Mary Lou Falcone

Mary Lou Falcone was a talented singer and then a publicist for some of the biggest classical musical stars of our time, like conductor Gustavo Dudamel and opera singer Renee Fleming. She has advised institutions like Carnegie Hall, the Chicago Symphony, the New York Philharmonic — the list goes on. She started her public relations career with the St. Paul Opera back in 1974. And she returns to Minnesota this week to share her own story.

MPR News host Cathy Wurzer spoke with Falcone about her new memoir, “I Didn’t See it Coming: Scenes of Love, Loss, and Lewy Body Dementia,” which details her journey of caregiving for her husband, the artist and pioneering rock ‘n’ roller Nicky Zann. He died of Lewy body dementia in 2020.

Use the audio player above to listen to the full conversation.

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Audio transcript

SHOW HOST: We have some fascinating people on this show, and we're about to meet another one Mary Lou Falcone was a talented singer and then a publicist for some of the biggest classical music stars of our time, like conductor Gustavo Dudamel and opera singer Renee Fleming. She's advised institutions like Carnegie Hall, the Chicago Symphony, the New York Philharmonic, and the list goes on. She started her public relations career with the Saint Paul Opera back in 1974. And she returns to Minnesota this week to share her own story. MPR News host Cathy Wurzer spoke with her.

CATHY WURZER: Mary Lou Falcone has spent a professional life shining a spotlight on other people's stories. Her first book, though, has just been released, I Didn't See It Coming. It's about her life and her journey as a caregiver for her husband, noted artist and pioneer rock and roller Nicky Zahn. He died of Lewy body dementia in 2020. Mary Lou Falcone joins us right now to talk about their story. Such a pleasure, welcome.

MARY LOU FALCONE: Thank you, Cathy, it's an absolute delight to be with you.

CATHY WURZER: October is Lewy body dementia month. Sadly, you've become an advocate for people living with Lewy body dementia, or LBD. And I don't think people really know much about this disease yet. It's the second most common form of dementia after Alzheimer's. What do you want people to know about LBD?

MARY LOU FALCONE: Well, first, I want them to know how to spell it. Lewy body dementia is L-E-W-Y. And if you can't spell it, you can't find it. So what I want people to know about it is that it's not a rare disease. As a matter of fact, it is, as you mentioned, the second most progressive dementia after Alzheimer's disease. And it affects 1.4 million people in America alone. Also, if you take Lou Gehrig's disease, ALS, muscular dystrophy, and cerebral palsy, and put them all together, the aggregate number does not equal the number of people who have Lewy body.

CATHY WURZER: How did you know your beloved husband Nicky was having issues?

MARY LOU FALCONE: Oh, that's a really fantastic question. In 2016, I began to see some issues, some behavior that just wasn't Nicky. He wasn't clear, some anger issues, some memory issues. But, you know, I chalk that up to being tired or whatever. We went to Vienna at the end of 2016, actually to see Gustavo Dudamel and the Vienna Philharmonic, both of whom I was representing at the time. And in Vienna, we were to meet at a restaurant, and a restaurant that Nicky knew well, which was 1 and 1/2 blocks from the place that we were staying.

After an hour of sitting in the restaurant and no Nicky, I got really, really frightened. And I excused myself from the group that I was with, went out into the square, the main square, to look for Nicky. And lo and behold, there he was right in front of me. And I looked into his eyes. And the minute I saw him, I knew something was wrong. And he looked at me, and he said, well, you gave me the name of the restaurant, but you didn't write down the address, totally unlike Nicky. And I said, well, you're right, I didn't write down the address. And my instinct was just to look at him and say I am so sorry. Because I knew something was dreadfully wrong.

When we came back to the states, we found out that he had had a major heart attack and that he needed triple bypass surgery. Well, the triple bypass surgery happened. Hallucinations came with the anesthesia from the surgery. And so a year and a half later, when Nicky was supposed to be full of life and vigor again, he wasn't. He was losing weight. Hallucinations were continuing, which I didn't know until much later. And we went to a neurologist. We were one of the lucky ones. This particular neurologist was brilliant at getting it. Usually, people have to be diagnosed many, many, many times. Usually, they're misdiagnosed, and then finally, if you're lucky, you get the diagnosis.

CATHY WURZER: When it comes to being with an individual who has really any form of dementia, but LBD is very difficult. It's like you're on shifting sand. And that's not only for the patients, but also for you as a caregiver. How did you navigate that for yourself as the caregiver?

MARY LOU FALCONE: Well, I started as a caregiver when I was 10 years old. My father had a massive stroke. And he lived, but he never spoke again for the rest of his life. I had a chance to redo with Nicky. And that is everything that I didn't have as a child, patience, extraordinary compassion, things that are really important for caregivers. I learned, over the years, I learned by working with artists, a lot of patience working with artists. It's a form of caregiving. And then ultimately, in working with Nikki, on facing this disease together. And I say we because it is a we involved in this. We took the journey together.

And I had to learn that when I got frustrated, when I got angry, and of course, everybody does. You take yourself away from the person, meaning you go into another room, you go someplace else. And there are techniques which you can use to calm down and get your equilibrium back. Among them are screaming into a pillow. And I'd highly advocate that darn, and damn, and darn it don't work. It's the F word that works, I'm sorry to say. It's one I don't use in my normal language, but I would scream the F word at the top of my lungs into a pillow.

And then I would take a lavender sachet, and I'd inhale, do a very deep yoga breath, inhaling lavender sachet. And it is amazing how this will calm you down. And then I could go back into Nicky with a big smile, and I was able to cope. You're dealing with-- with any dementia, you're dealing with your loved one each day diminishing a little more. So a little more of that person is leaving. That's hard. In Lewy body, however, that person comes back every once in a while. And that's also a difficult thing to deal with. At the end of the day, that person still exists. And the feelings still exist.

CATHY WURZER: Of course, every caregiver who just listened to you talk probably understands, at some level, the cathartic nature of swearing and the taking a deep breath. Thank you for reminding us to do that. We appreciate that. When you say that Nicky would come and go, which is true with LBD. I thought it was very interesting in the book how he was so clear at the end of his life there for a moment.

MARY LOU FALCONE: Oh, this was pretty amazing. A week before he died, he stopped eating. And a nurse friend of mine had said to me, when people do that, please don't force them. Offer it, but do not force. Because the person who is making this choice knows what he's doing. And so I followed that advice. On that Thursday, I was putting hospice into place. And I thought I'd give a call to our closest relatives and very dearest friends.

And about seven people came. And so each person went into the bedroom to say goodbye. And they came back into the living room, and we're all sitting and chatting. And I heard Nicky calling. I went back, and I said, what is it? And he said, I want to get up and go into the living room. And I thought, whoa, he can hardly walk. I put a robe on him, I put him in the transport chair. And I wheeled him into the living room. And one by one, by name, he said goodbye to everyone in that room and thanked them. Ever the host, ever the gentleman, and then he looked at me and he said, I'm tired, I have to go back to bed.

CATHY WURZER: And that was it.

MARY LOU FALCONE: That was it. And a couple of days later, he was gone, but not until he said everything that he wanted to say.

CATHY WURZER: And now he's kind of-- interesting how he helped you write this book, in a sense, because his illustrations are throughout the book, and they're wonderful.

MARY LOU FALCONE: Yeah. Well, he didn't just help me. He actually, before he died, in one of his lucid moments, toward the end, said to me, you have to write. And honestly, Cathy, I didn't know what that meant in the moment. But after he died, it was just like a light bulb went off. I have to write about Lewy body dementia and our journey on that path. It's interesting to note that as I was writing, two things happened. One was, three months after his death, I came upon a poem. And it was a poem that described how he felt and his descent into Lewy body dementia. I have never read anything more poignant in my life. And so I incorporated it into the book.

Shortly thereafter, it occurred to me he had done a game, a fortune-telling game for the layperson, called The Answer Deck. There were cards that evoked certain emotions, happiness, reconciliation, wisdom, words like that. And I thought, whoa, I have 50 chapters. I wonder if I could match an emotion with each chapter. I'm here to tell you, it took me 30 minutes, and it never changed.

CATHY WURZER: Mary Lou, your book is wonderful, truly, truly it is. It just touched my heart. Thank you so much.

MARY LOU FALCONE: Cathy, thank you so much for this opportunity. And the last word that I will say is, to all caregivers out there, you are not alone.

SHOW HOST: That was NPR News host Cathy Wurzer talking with Mary Lou Falcone about her book, I Didn't See It Coming, Scenes of Love, Loss, and Lewy Body Dementia. Mary Lou Falcone will be in Minnesota for a media tour this week. And this Thursday, she and Cathy will get together for a longer conversation about caregiving at the Mayo Clinic Palliative Care Conference for nurses in Rochester.

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