Love, Loss, Lewy Body Dementia in Mary Lou Falcone’s ‘I Didn’t See It Coming’

Lewy physique dementia is among the most widespread types of dementia. Estimated to make up virtually 20 p.c of dementia circumstances worldwide, the kind of dementia is characterised by issues with reminiscence, fatigue, temper modifications, and hallucinations. For family members and other people dwelling with LBD, the trail to prognosis and remedy is often an extended one. In reality, the Lewy Physique Dementia Affiliation discovered that 80 p.c of members with such a dementia had been initially misdiagnosed with one thing else; usually sufficient, Alzheimer’s, as many — however not all — of the signs overlap. Not all circumstances of Parkinson’s illness are accompanied by dementia, however within the circumstances the place somebody with Parksinson’s does have dementia, it’s more likely to be Lewy physique.

Having navigated this journey together with her late husband, Nicholas ‘Nicky’ Zann, Mary Lou Falcone determined to inform their love story to interrupt the stigma across the illness and information caregivers together with her memoir, I Didn’t See It Coming (October 2023, East Finish Press). 

Falcone thought she would by no means write a e book, at the least about her high-profile shoppers. Nonetheless, “I knew within the second that he handed what I needed to write about,” Falcone defined. She knew she “needed to write our love story from the standpoint of our journey, hope, and resilience, and I needed to do it for different caregivers.”

For 50 years, she helped information the careers of celebrated artists like Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, and James Taylor. Falcone has additionally suggested establishments like Carnegie Corridor, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, and Vienna Philharmonic. Combining her communication abilities together with her background as a performer and educator, Falcone now advocates for Lewy physique dementia consciousness by sharing her story. 

Becoming a member of in dialog with Being Affected person founder Deborah Kan concerning the e book and her journey, she shares her story of “love, loss, and Lewy Physique dementia,” in addition to her recommendation for caregivers. 

Learn or watch the complete dialog beneath. 

Being Affected person: You have got an illustrious profession as a music publicist for the likes of James Taylor and the New York Philharmonic. You had been a busy lady and are a busy lady. I can solely think about what it was prefer to have a profession after which out of the blue have a husband with Lewy physique dementia. What had been a few of the first indicators, and the place had been you in your life?

Mary Lou Falcone: The primary indicators had been within the fall of 2016. What I noticed was some forgetting, however you recognize, Nicky was 72, and I assumed that was not too irregular. Just a little paranoia, and slightly little bit of anger, which he by no means was an indignant individual, and repeating himself. Then, a extremely telling one was taking wherever from 20 to half-hour to put in writing a test. 

I assumed this was slightly odd; perhaps he’s drained. You may at all times make excuses for issues and discover causes that you simply shouldn’t be alarmed. However, by the tip of that 12 months, it was in December, we had been in Vienna, and he was very drained and slightly foggy. One night time, he was supposed to fulfill me and a few pals in a restaurant that he knew very nicely. Lo and behold, a half-hour, 45 minutes go, no Nicky. I obtained actually frightened. 

I went to attempt to discover him heading in direction of St. Stephen’s Cathedral, and I didn’t know the place I’d look. However as destiny would have it, and thank goodness for greater powers, Nicky was strolling towards me. As he got here towards me, what I noticed in his eyes was concern. He confronted me and mainly mentioned, “You didn’t give me the tackle. You didn’t write it down.” He by no means spoke that method to me. I obtained very calm, and I mentioned, “Please forgive me. It’s my fault, and I actually ought to have finished that. Let’s go to dinner.” 

We proceeded on our Vienna journey, and I used to be there. We had been there for the Vienna Philharmonic’s New 12 months’s live performance, which was carried out by Gustavo Dudamel. Each the Vienna Philharmonic and Gustavo had been my shoppers on the time. It turned a joyous event, however there was a whole lot of doubt planted throughout that journey.

Being Affected person: I can’t think about that. It could be a extremely scary factor. I’m amazed that, with out having a prognosis or what you had been coping with, you knew methods to handle that scenario. Why did you try this? That’s actually superior. Folks normally must be taught to strategy conditions that approach.

Falcone: There’s a backstory to this, and that’s, I had been a caregiver since I used to be ten years previous. My dad had a large stroke when he was 37. As I mentioned, I used to be 10, and I turned the caregiver for my dad and for my youthful brother and sister, whereas my mom held down three jobs to maintain our household collectively. 

“It turned a joyous event, however there
was a whole lot of doubt planted throughout that journey.”

A baby thinks they’ll make something occur. What I realized in that caregiving scenario was slightly bit about persistence, not lots as a result of a baby thinks they’ll make it alright, however I started to learn to make individuals really feel extra snug who couldn’t do issues that they had been doing earlier than. So, one thing simply kicked in and mentioned to me, “Floor, go mild, and take the blame.”

Being Affected person: It’s my unscientific perception that Lewy Physique is essentially the most underdiagnosed sort of dementia. Once we do interviews, individuals inform us, “I used to be first misdiagnosed with Alzheimer’s, and this occurred to me.” What you’re describing sounds a bit like early phases of Alzheimer’s, so inform me what that prognosis course of was like. How did you come to Lewy Physique?

Falcone: It was slightly bit sophisticated. After that session in Vienna, we went on to Paris. Unbeknownst to each of us, he had a coronary heart assault in Paris. We should always have seen the signs, however he was effective by morning, so we didn’t assume something of it. 

Coming again stateside a few weeks later, it occurred that he had his regular bodily, which he had each six months. He mentioned to the physician, “By the way in which, what occurred to that check you had me take, the calcium rating check?” Our physician seemed it up, and he went, “Oh, my goodness, Nicky, we’ve obtained to get you to a heart specialist now.” They did a stress check, they usually came upon that, certainly, he had a coronary heart assault. 

They set him up with a heart specialist that everyone agreed upon, and we went to the heart specialist, [who] mainly mentioned, “Properly, look, I feel that you want to do an angiogram for positive, and from that may decide whether or not you want some capsules and stents or no matter.”  I went, “Oh, that’s why he’s been so form of out of it or no matter. There’s most likely not sufficient blood stream to the pinnacle.” 

Throughout that interval, Nicky and I had been collectively for 34 years, and we’ve recognized one another for 44 years, however we had not been married. One thing in me mentioned, “Oh, one thing is basically dramatically improper right here, and deep in my coronary heart, I knew one thing was extra than simply the center.” I checked out it once more, and I mentioned, “You’ve been asking me to marry you for 34 years, proper on clockwork yearly. Principally, I feel we should always do it.” He checked out me, and he had an excellent humorousness. He mentioned, “Properly, it’s solely been 34 years. What’s your hurry?” 

We obtained married on the thirteenth of February. On the 14th of February, we went to Sinai for the angiogram. I quipped, “Doesn’t everyone go have their coronary heart checked out on Valentine’s Day?” On the fifteenth, he was in surgical procedure, [which] turned a triple bypass. That was speculated to be the start of a brand new begin. It was the start of the tip as a result of he didn’t come again from the hallucinations. 

The hallucination began with the anesthesia, which was fairly in depth, and he didn’t get stronger. He stored shedding pounds. Nicky was a really skinny individual, so he couldn’t afford to shed extra pounds. I watched this for a couple of 12 months, hoping that perhaps he was only a gradual healer; he was now 73. Possibly, perhaps, perhaps.

By 2018, we switched common physicians. Our new doctor mentioned, “You’re asking me about an MRI,” as a result of I requested for a baseline MRI, and he mentioned, “Let’s watch slightly bit longer.” As he was watching, we had been in Stockholm, and we had been there for an enormous occasion that I used to be operating. Nicky couldn’t get by the road on the airport. He didn’t know methods to undergo the steel detector. Once we obtained to the lodge, he couldn’t discover his approach from the desk to the room. 

It was sleeping all day in order that at night time he could possibly be shiny and with it and, all one hundred pc, Nicky. Nonetheless, we didn’t know what it was, however we labored with it. We got here again, and I mentioned to the physician, “MRI now, please. That is an excessive amount of.” He did it, after all. He was great. 

The MRI confirmed age-appropriate deterioration, which to me is a nonsense phrase for “We don’t know what’s occurring. We will’t let you know.” From there, our physician, who was very type, mild, and good, mentioned, “I’m sending you to the perfect neurologist I do know.” 

“The neurologist did a cognitive check
and watched Nicky stroll, and he mentioned,
level clean, ‘That is Lewy physique
dementia with Parkinsonian features,’
proper out of the gate.”

Now, he didn’t say for what; he simply mentioned the perfect neurologist I do know, and he despatched us out of system, which isn’t the way in which they typically do issues. The neurologist did a cognitive check and watched Nicky stroll, and he mentioned level clean, “That is Lewy physique dementia with Parkinsonian features,” proper out of the gate. 

Being Affected person: That’s superb as a result of many excellent and competent neurologists wouldn’t make that early assumption. So, what was it? Why achieve this many individuals have such a tough time getting recognized with Lewy Physique?

Falcone: Completely. However simply to make sure, he then mentioned, “I’ll do a DaT scan, and I’ll do a REM sleep check.” Now, with Lewy Physique, there are three telling indicators. One is early hallucinations. One other is the fluctuations, like in the future or one hour, you’re fully you, and you then don’t even know who the individual standing subsequent to you is. The third factor is REM sleep problem. That’s when, for individuals who don’t know, you’re dreaming, for example, punching any individual, and also you truly act it out. 

The REM sleep check confirmed certainly he had REM sleep problem. The DaT scan confirmed the alpha-synucleins, that are the Lewy our bodies, which mainly are rogue proteins. They’re proteins that go tangled and rogue and reconfigure. That’s why I feel individuals can fluctuate out and in of lucidity. They don’t simply injury and keep. They’ve a sample to them that they tackle, however that’s simplifying it. That’s mainly it. 

So, we had been fortunate. We had been very fortunate as a result of [for] most individuals, it does mimic Alzheimer’s. It does mimic Parkinson’s, which typically it is usually, and it mimics psychiatric issues. That’s why it’s so exhausting to get a deal with on it.

Being Affected person: I wish to speak slightly bit concerning the hallucinations as a result of there are individuals who we’ve interviewed earlier than with hallucinations outdoors the norm. Don Kent, who I carry up fairly a bit as a result of I feel that is simply such an unimaginable symptom—when he ate what was salty, it tasted candy, and when it was candy, it tasted salty. He went to 6 neurologists, and nobody recognized him. The Mayo Clinic lastly mentioned, “That’s a hallucination. You have got Lewy Physique.” In Nicky’s case, what had been the hallucinations like?

Falcone: With Nicky, it manifested itself in an fascinating approach. First, it was audio hallucinations. Nicky had been a rocker within the Nineteen Fifties, a rock’n’roll teenage idol, and on the identical phases as Johnny Money, Patsy Cline, and Jerry Lee Lewis—so he was for actual. Music was crucial to him, and audio was crucial, though he was dropping his listening to. That’s additionally a symptom of all this. 

He mentioned to me, after he was recognized, the day he was recognized, “Do you hear the voices popping out of the tap?” I mentioned, “No, however I do know you do.” “Do you hear the music popping out of the pillow?” “No, however I do know you do.” That’s the way it was manifesting itself early on. 

Then, there have been visible hallucinations. You realize, the little animals. I bear in mind one when he instructed me he wakened from a dream, and he was trying across the room. I mentioned, “What’s it?” He mentioned, “Properly, there are squirrels operating throughout the room, they usually’re operating underneath you. I’ve to enter the lounge and test to guarantee that they’re not there. I feel we have to purchase a $17,000 mattress to exchange the mattress we’re in.” It wasn’t malevolent, nevertheless it was bizarre. 

Being Affected person: How lengthy did he reside with Lewy Physique?

Falcone: From prognosis, it was 16 months, which may be very quick. 

Being Affected person: I’ve by no means heard of something so quick. Is there any reason some individuals can reside with Lewy Physique for years and years, and for others, it goes that rapidly?

Falcone: I don’t assume so. It’s the longest case that I’ve heard of. Norma Loeb, who runs the Lewy Physique Dementia Useful resource Heart, [said] her mother had it for 18 years. Nicky’s is among the shortest circumstances I’ve ever heard. I feel that’s [because of a] couple of issues. 

“From prognosis, it was 16
months, which may be very quick.”

His first 12 months, he was fairly robust. He was capable of maintain his personal, and it was okay. Then, within the second 12 months, within the final 5 months or so, the pandemic hit. I feel that precipitated an isolation that was crucial. With that isolation got here some cocooning. We had been capable of come residence, which was a good looking factor, in some ways. You realize, it doesn’t all must be doom and gloom. It may be lovely moments, and there have been. 

As a matter of reality, when Nicki was recognized in March of 2019, he mentioned three issues to me. The primary was, “I’ve at all times needed to fulfill your father, and now we’ll have my alternative,” which was his approach of telling me he knew he was dying. The second factor he mentioned, and I reside by this each single day, is, “We’ve had an excellent run. We can’t be unhappy.” The third factor which touched my coronary heart, and I labored very exhausting to take care of it, and I’m proud that I might, was, “Please, Mary Lou, assist me to maintain my dignity,” and that’s crucial for caregivers, too.

Being Affected person: I completely, one hundred pc agree. I take into consideration this with my very own mother, however how do you try this?

Falcone: You placed on, just like the Italians say, “La bella figura,” the gorgeous face, however you must consider it— as a result of the one that is throughout from you feels what you’re feeling. They might not be capable to articulate it, they might not be capable to perceive it, they might not even be capable to converse at that time— however I consider that the one you love is in there and feeling. The sort contact, the contact on the face, the sort phrase, the loving kiss, no matter it’s, actually does make a distinction. I’m not saying it’s simple as a result of it’s not. 

When the going will get tough, you want to take a deep breath and depart the room, and go someplace the place you could have a pillow ready into which you scream. I feel that in case you say heck, rattling, darn, it doesn’t do it. I’d scream the F phrase on the prime of my lungs into this pillow as a result of there’s one thing that will get launched. Then I’d take a lavender sachet, and I’d take a type of yoga breaths and inhale. Once I calmed myself, I’d go in and greet Nicky with an enormous smile and a hug as a result of it’s not his fault. No one asks for this. Who would? 

“When the going will get tough, you want to take a deep breath and depart the room, and go someplace the place you could have a pillow ready into which you scream.”

Being Affected person: Completely. That’s such nice recommendation. Inform us slightly bit about why you felt the necessity to write I Didn’t See It Coming. What do you wish to accomplish by publishing this e book?

Falcone: I’ll preface this by saying I used to be the one that, for 50-some-odd years, would say every time I used to be requested, “Are you going to put in writing the e book,” which means the inform all about my shoppers, et cetera, and the reply was “By no means. I’m by no means writing a e book, interval, the tip.” However, about three months earlier than Nicky died, he checked out me in the future in a type of lucid moments and mentioned, “Mary Lou, you must write,” and I assumed to myself, “Write what?” Then he handed, and I knew within the second that he handed what I needed to write about. I needed to write our love story from the standpoint of our journey, hope, and resilience, and I needed to do it for different caregivers. 

As a result of after I went to our very sensible neurologist, who obtained the prognosis proper out of the gate, for which I’m grateful, and I requested my questions, “What can I count on? What is that this going to appear like?” He wouldn’t reply me. Not one phrase besides to say you’re going to seek out extra out from people who find themselves coping with this than you’ll from anyone else. In that, he was right. I nonetheless assume he might have been slightly bit extra forthcoming. 

Being Affected person: Do you assume he wasn’t telling you as a result of he simply didn’t need you to know or he didn’t wish to make you depressed?

Falcone: No, as a result of a buddy of ours had died of Lewy Physique dementia three years earlier than this prognosis. Once I talked to his widow, she requested me who our neurologist was, and I instructed her, and he or she mentioned, “Oh, you’re so fortunate. He was ours, and he walked me by each step of it.” 

I went, “Wait a minute, are we speaking about the identical individual?” We had been. So, she had steerage all alongside the way in which. By the point I obtained to the identical individual, there was no steerage. One thing occurred. I can solely speculate, and that might not be honest as a result of I don’t know. However one thing occurred to this man between the time she had him and I had him.

Being Affected person: I imply, what you’re stating and never pointing fingers at anybody, however we hear this time and again. A number of your expertise with a prognosis has to do with that sort of communication together with your physician. You wish to develop into nearer to your physician. You don’t need your physician to only provide you with this information and never steerage.

Falcone: Thank goodness for our common doctor, who I’ll identify, it was John Cahill, and Nicky known as him the angel as a result of this can be a man who had such compassion. His sister additionally had been recognized, and his younger sister, in her late 40s, had been recognized with early onset Lewy Physique dementia. So, he knew what he was taking a look at, and he knew what it did. He was a blessing, no query about it. We had been fortunate. We had been simply very fortunate with him, so I do depend my blessings. 

However going again to why I wrote this e book, it was to present caregivers a suggestion. And why did I write it the way in which I wrote it? As a result of I had front-loaded the entire thing with Lewy Physique, that was my cause for scripting this e book. A really sensible editor mentioned to me, you must inform your story, your Nicky’s story, as a result of except we care about you— you’re by no means going to get us to care about Lewy physique dementia, and he or she was proper. I rewrote, rewrote, and rewrote, however lastly, I obtained it the place I needed it, which was to put in writing it as a story, as a narrative of our life, my life first, after which when Nicky joined my life, and what our what our journey was.

Being Affected person: It’s a love story, proper? You write it like a love story.

Falcone: I do, as a result of what you bear in mind are tales. What you bear in mind are, sure, the unhappy elements, however you bear in mind the pleased elements too. I actually did wish to level out that there’s a whole lot of pleasure within the agony. There’s each. 

Being Affected person: I so respect that you simply say this and consider you, however I feel that most individuals aren’t such as you. I feel it’s very, very exhausting to get to that area. I see it inside my circle of relatives— that’s a tough factor. You appear very constructive, and you recognize intuitively methods to protect your relationship with Nicky.

Falcone: Bear in mind, I had a job mannequin known as my mom, and no one had a more durable life than my mom did. I gained’t go into the small print, however my father’s sickness alone. She was 38 years previous; he was 37 years previous— the prime of their lives. 

“I actually did wish to level out that
there’s a whole lot of pleasure within the agony.
There’s each.”

They misdiagnosed my dad when he had a stroke. He lived, however he by no means spoke once more for the remainder of his life. And to observe them talk, to observe this, you simply must, at the least I needed to, embrace that as one thing to emulate. Possibly I’m not regular. I’d say that it’s one thing I work at, to be constructive. I do deflect negativity. I’ve my entire life. I want to dwell on the constructive, and I’ve made {that a} mantra.

Being Affected person: That’s one of the simplest ways to reside and makes for an extended, pleased life. Can I ask you slightly little bit of a troublesome query? I’m asking you this as a result of it comes up from our neighborhood of readers. How does somebody die of Lewy Physique dementia?

Falcone: That’s an excellent query. In Nicky’s case, bear in mind there was additionally Parkinson’s current, so the strolling turned troublesome, and eventually, a wheelchair needed to be employed, which I known as the chair with wheels as a result of I refuse to name it a wheelchair in his presence. [Then], he was having hassle along with his fingers. He couldn’t maintain a fork. He couldn’t lower. 

I bear in mind one dinner we went to with an entire group of pals, and my colleague sitting subsequent to him seen that he was having problem slicing, and subsequently she simply reached over very gently and lower up his meat. So, there was that. There have been swallowing points. Swallowing turned exhausting. There’s incontinence, bowel incontinence, and urinary incontinence. It simply occurs as a result of your muscular tissues won’t perform as they’d. 

In these cases, I’d simply say [that] he will get so embarrassed and so upset. I’d say, “That’s what washing machines are for. Don’t fear about it, it occurs. We’ll make it proper.” In the meantime, you wish to tear out your hair as a result of the mess is the mess. However that’s what you do. Towards the tip, the lucidity with Lewy Physique comes out and in, as I mentioned earlier than, and Nicky wrote a poem a couple of month, a month and a half, earlier than he died, which I discovered three months after he handed. 

This poem described his descent into Lewy Physique, what it felt like from his perspective. Now, he had been a author, additionally for Esquire journal, he was an actual author in addition to his different nice abilities and [career as an] artist, et cetera, however this poem was so highly effective. As I watched him decline, there have been days after I would say, “Nicky, are you aware who I’m?” And he’d say, “No, however that’s all proper.” Or we’d at all times sit on the dinner desk, even when he couldn’t stroll, we’d are available, and simply so we’d be collectively. On the finish of dinner, I knew he couldn’t arise. I’d attain over, and ostensibly to hug him, however to raise him as I used to be hugging him, and we had a ritual, and it labored. 

On the finish, he made a alternative, per week earlier than he handed, to cease consuming. He simply stopped, two bites of hen salad that individual day after we had been visiting along with his favourite godchild, who was three years previous, and his niece. He stopped, and I used to be instructed by a nurse buddy of mine [that] when that occurs, provide, however don’t pressure. Two days later, he stopped ingesting, no liquids, and wouldn’t take something. You are taking a moist sponge and simply guarantee that every thing retains lubricated, however that was it. 

When that day got here, it was a Thursday, and he died on a Tuesday. So, he was 4 or 5 days away from passing. When that day got here, I known as all of our shut kinfolk and shut pals to come back over to say their goodbyes, they usually got here that night they usually mentioned their goodbyes, they went into the bed room. He was bedridden however got here again into the lounge. I heard a voice, and it was Nicky from the bed room, so I went in and I mentioned, “What’s it,” and he mentioned, “I wish to rise up and go into the lounge.” Clear. I mentioned, “Fantastic,” put a gown on him, and took him into the lounge. 

“In that second, he was gone, nevertheless it wasn’t
horrible as a result of I knew he selected in his second.”

Deborah, I’m right here to let you know that he mentioned goodbye by identify and thanks to everyone in that room. Then checked out me and mentioned, “I’m very drained. I’ve to return to mattress.” And that’s the way it ended. When he lastly took his final breath, I used to be holding his hand. My telephone pinged, and I seemed away for one second. In that second, he was gone, nevertheless it wasn’t horrible as a result of I knew he selected in his second. I simply know in my coronary heart. 

Being Affected person: That truly is gorgeous, the way in which you describe it.

Falcone: It was. In fact, you’re unhappy, however with Alzheimer’s, with Lewy physique, with any of those dementias— you’re dying slightly bit on daily basis, and so is the one you love, simply watching this. So, when the tip lastly comes, there’s a rejoicing that the agony is over. 

Being Affected person: Completely. When we have now a cherished one with dementia, we simply pray that the tip just isn’t painful. I feel that that’s what weighs on me.

Falcone: I don’t assume it’s. Hospice is great, they usually carry within the end-of-life equipment, and the morphine is there, and the morphine helps. In addition they ask you in order for you an oxygen masks, and instinctively I mentioned no. However then I known as our medical doctors and [asked] if I ought to have mentioned sure, and he mentioned, “No, you’re proper. Your intuition was proper,” as a result of I felt that something on the face, something that was intrusive, would truly be unfavourable, not constructive. 

Being Affected person: After scripting this e book, how would you like individuals to recollect Nicky?

Falcone: I need individuals to recollect Nicky as he was described within the tons of of condolence letters that had been despatched to me, which is, [that] he made us really feel like essentially the most particular individual within the room along with his love, along with his kindness, and along with his generosity. That’s the Nicky that everybody remembers and misses.

Being Affected person: What a good looking story. I Didn’t See It Coming is accessible for buy on Amazon. Thanks for sharing the story. These kind of interviews and books are so useful to individuals. Thanks for writing about it. It’s actually vital.

Falcone: Thanks. Thanks very a lot for the chance to share. One final phrase and that’s to all caregivers on the market. Please know, [that] even in your loneliest moments, you aren’t alone. That’s why I wrote this e book to make that message clear. 

Katy Koop is a author and theater artist based mostly in Raleigh, NC.