In 'I Didn't See It Coming' Author Mary Lou Falcone Documents Her Husband's Battle With Lewy Body Dementia

Mary Lou Falcone is on a singular mission. She’s working to raise awareness of a little known disease that results in major life changes for the patients who are diagnosed with it and the families that care for them.

It’s called is Lewy body dementia (LBD), and it’s the illness that drove Robin Williams to suicide in 2014. It’s also the disease which, in 2020, took the life of Falcone’s longtime partner and husband, illustrator Nicky Zann.

“LBD is a disease that was only described as such in the 1990s, and it was totally off the radar until Robin Williams, who had been diagnosed with Parkinson’s but not LBD, took his own life,” Falcone explained. “His widow was determined that should not be his legacy.

“In an autopsy, they saw that his brain was littered with Lewy bodies — which are rogue proteins that attach themselves to brain cells,” she continued. “It can be either Lewy or Parkinson’s or both. For Robin and Nicky, they were both there.

“Robin never knew he had LBD. The reveal of his brave widow made others sit up and pay attention to this disease,” she added. “Tom Seaver, Dina Merrill and Estelle Getty all died of it. Now Ted Turner has it.”

Falcone, who lives in New York City, does a lot of traveling these days to spread the word about the disease. During a recent Zoom interview, she noted that she had just returned from a LBD conference at the University of Wisconsin and would soon be heading to the University of Nebraska for another forum on the subject.

November is National Family Caregivers Month, and this Friday, November 15, at 5 p.m. Falcone will be at The Church in Sag Harbor to present “It’s Not Always Alzheimer’s: The Caregiver’s Journey.” Falcone will share stories from her new memoir, “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia,” which is all about her life as a singer, teacher, classical music publicist and, most importantly, caregiver.

“I had been a caregiver since I was 10 years old after my dad had a massive stroke at the age of 37,” she explained. “My brother was 7 and my sister was 5. I was the caregiver for my dad and my siblings.”

Falcone’s book delves into the world of LBD, but it is also a memoir that begins in her youth when her talent as a singer was recognized early on. In her teens, she was awarded a scholarship to the prestigious Curtis Institute of Music in Philadelphia. Falcone began her career as professional singer, but soon discovered a passion for teaching and moved into music education. Ultimately, Falcone’s many connections in the music world inspired her to become a classical music publicist and strategist. For 50 years, she has helped guide the careers of artists like Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti and James Taylor. She has also served as an advisor to many institutions including Carnegie Hall, New York Philharmonic and Vienna Philharmonic, among others.

But Falcone maintains that her life is defined by her most important role — that of caregiver for the people she’s loved. In fact, she sees all her previous careers, from performing and teaching to public relations, as a form of caregiving as well.

“I tell my story from age 10 to 79, and differentiate between Alzheimer’s and LBD,” Falcone said of her memoir. “Everyone knows about Alzheimer’s and people will say everything is Alzheimer’s, but dementia is the big umbrella term for brain dysfunction. Behind Alzheimer’s, LBD is the second most common form of progressive dementia. There’s also frontotemporal dementia, which is what Bruce Willis has.”

To make it all even more confusing, there is often more than one form of dementia present in a patient at any given time.

“Forty percent of brains autopsied for Alzheimer’s also have LBD,” Falcone said. “My doctor friends say it’s more like 60 to 80 percent that have it.”

Falcone’s transition into becoming a caregiver for her husband began in the fall of 2016, when she first noticed he was displaying some strange symptoms.

“There was great fatigue for Nicky, a little fogginess, a bit of anger and that was not Nicky. Also a bit of paranoia, which was not him either,” she said. “It took him 20 minutes to write one check. You think things like, he’s overworked or it’s the time of year and you’re not sure what’s going on.”

The first major warning sign that something was seriously wrong surfaced when Falcone and Zann traveled to Austria for a Vienna Philharmonic concert on New Year’s Eve.

“There was a dinner where we were to appear, and we were to meet at a restaurant he knew well,” Falcone said. “At 8:45, there was still no Nicky. So I excused myself to go see if I could find him by St. Stephen’s Cathedral. I didn’t know what else to do, but as fate would have it, who would be walking toward me but Nicky.

“I saw fear in his eyes,” Falcone recalled. “He said, ‘You didn’t give me the address and didn’t write it down.’ I knew it was fear and that was the beginning. In my 70s, I became the caregiver for the person I love more than anyone in the world.”

Back home in New York, after a diagnosis of a heart problem for Zann and a triple bypass, Falcone thought the problem would be solved.

But it wasn’t.

“He didn’t get any stronger, the fogginess didn’t clear up, he was still having hallucinations, which sometimes comes from anesthesia, but he didn’t tell me it was continuing,” she said. “He was also losing weight and that was the most telling factor. Nicky was thin and fit and to see him lose weight was frightening.”

In 2018, under the care of a new doctor, Falcone advocated for Zann to have an MRI to establish a baseline. Around that time, the couple traveled to Europe again. This time, Stockholm, Sweden, where Falcone was running an event. More red flags surfaced when Zann couldn’t find his way from the hotel’s front desk to their room.

“He would sleep all day and in the evening, he did something called ‘showtiming.’ He would put on his black tie and tuxedo and be on,” she said.

Back in New York, the baseline MRI revealed age appropriate deterioration and the results were sent to a neurologist for further analysis.

“From a cognitive test, they said this is Lewy body dementia with Parkinsonian aspects,” Falcone explained. “It’s such an elusive disease and there are so many facets to it. It also mimics Alzheimer’s but it can be Parkinson’s too, and with a psychiatric angle.

“The showtiming is about that. These patients harness energy and focus on what they can,” Falcone said. “Alzheimer’s goes on a steady descent, but with Lewy body, you fluctuate. One day, you’re 100 percent yourself, the next day you may not know the person standing next to you. There’s also REM sleep disorder, where you act out a dream physically, punching someone in your dream and in real life.”

The diagnosis was terrifying to Falcone, who initially had no idea about what she needed to do to care for her husband.

“Caregiving is improvisation, on the job training and caregiving for dementia is another matter,” she said. “When I asked the neurologist for a hint of where to go, he was useless. There was no social worker, nothing. I felt like a balloon whose string had been cut and I was floating untethered.”

It was the actor and advocate David Hyde Pierce who told Falcone about Caringkind, an Alzheimer’s organization based in Manhattan that offers free classes and clinics to teach caregivers what they need to know about dementia.

“I also took every free class I could at the Lewy body dementia resource center,” she said. “They have a website that is magnificent and in eight languages. They had support groups and they were my life line.

“You will learn more from people who have the disease and their caregivers,” she added. “I decided that when this part of the journey is over, I’ll be helpful to others.”

The journey for Nicky Zann ended on July 14, 2020, in the midst of the pandemic and at a time when Falcone couldn’t bring in any outside caregivers, so had to rely on her inner strength to manage his care on her own.

“He fluctuated right to the end,” Falcone recalled. “Several days before he died, I brought in friends and family to say goodbye. He was bedridden. Then I heard a voice and it was Nicky who had not been verbal for days. He said, ‘Put my robe on and bring me into the living room.’ He said goodbye to all who were there by name. Then he said he was tired and died a few days later.”

“I Didn’t See It Coming” is Falcone’s first book and she admits that she was nervous to take it on. But she notes that in April 2020, prior to his death, Zann told her she needed to write a book.

“I’m the person who said I’ll never write a book. People expected me to write a tell-all about my pretty well-known clients. I said never,” she said. “It struck me as odd, but the day after Nicky died, I knew that I had to write one for the caregivers about what they need to know.”

After Zann’s death, Falcone became actively involved in LBD advocacy and someone asked what her call to action was.

“I said, ‘Awareness, awareness, awareness,’” Falcone answered. “With awareness comes dollars, research, diagnosis and a cure.”

Mary Lou Falcone presents “It’s Not Always Alzheimer’s: The Caregiver’s Journey” on Friday, November 15, at 5 p.m. at The Church. Tickets are $15 ($10 for members) at thechurchsagharbor.org. The Church is at 48 Madison Street in Sag Harbor.

Falcone is also an executive producer, along with Renée Fleming, Suzie and Bruce Kovner, Yo-Yo Ma, David Hyde Pierce, on “Facing The Wind,” an hour-long documentary directed by Deirdre Fishel that tells the stories of caregivers who are dealing with LBD spouses. The documentary will have its New York City premiere on Wednesday, November 20, at 6:30 p.m. at Village East by Angelika. It will be screened again in the city on Thursday, November 21, at 1:45 p.m. at the IFC Center. The film will also be available for online viewing from November 21 to December 1 at docnyc.net/film/facing-the-wind/.

For more information about Lewy body dementia and available resources, visit lewybodyresourcecenter.org.