Lewy Body Dementia, the second most progressive form of dementia impacting one million people in the US, is often confused with Alzheimer’s disease. In part 2 of BrainStorm’s interview with Mary Lou Falcone, author of “I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia” she describes her very personal journey with her husband Nicky Zann, famed musician and painter. She reflects with host Meryl Comer what prepared her for her caregiving role, and both candidly offers advice to other caregivers on intimate issues that rarely get discussed. You won’t want to miss it!
Produced by Susan Quirk and Amber Roniger
Lewy Body Dementia, the second most progressive form of dementia impacting one million people in the US, is often confused with Alzheimer’s disease. In part 2 of BrainStorm’s interview with Mary Lou Falcone, author of “I Didn’t See It Coming: Scenes of Love, Loss and Lewy Body Dementia” she describes her very personal journey with her husband Nicky Zann, famed musician and painter. She reflects with host Meryl Comer what prepared her for her caregiving role, and both candidly offers advice to other caregivers on intimate issues that rarely get discussed. You won’t want to miss it!
Produced by Susan Quirk and Amber Roniger
Mary Lou Falcone (00:01):
As you said, you wrote about what was happening for the doctors and I did as well and that's why I started that kind of writing was for the doctors. But I realized that I was also doing it for myself, that it was my way of getting this out. And when I sat down to write the book and never thought I'd have to go back to those notes again in my entire life, and I sat at this computer and with tears streaming down my face, reliving all of it. It was cathartic and needed to be
Opening (00:32):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy Award-winning journalist and the author of the New York Times bestseller “Slow Dancing With a Stranger.”
Meryl Comer (00:49):
This is BrainStorm and I'm Meryl Comer in part two of Breaking Through the Silence with Mary Lou Falcone, author of, “I Didn't See It Coming, Scenes of Love Loss and Lewy Body Dementia.” She describes what prepared her for her caregiving role and candidly offers advice to other caregivers on intimate issues that rarely get discussed. Can you describe the push pull of trying to give Nikki his autonomy and at the same time trying to protect him?
Mary Lou Falcone (01:23):
Oh yes, yes. I'll tell you about it via a story. One day he came back from the post office carrying a card that he had bought. He face was all banged up. He had a black eye. He was absolutely agitated. He had fallen. And when I said, where did you fall? He couldn't tell me. And when I said, did you get to the post office? He didn't know if he had or he hadn't. Although he had what he had bought at the post office. And I knew that that was the defining moment. I knew that I had to put my foot down. But again, you don't just say you can't because the minute you do that, you're taking dignity away. You're taking away some power. And that's, in my opinion, wrong to do. So I basically said, you know, Nikki, you have always wanted to do everything with me, so why don't we start now?
Mary Lou Falcone (02:13):
Let's do it together. When you have to go out or want to go out, let me know. Give me a little warning so I can rearrange my schedule, but I'll always go with you. We can go out together, it'll be fun. Let's do that. And that worked for a while. So anything that I had to say that was hurtful or would be wounding in any way, I saved for our doctor's visits so that our beloved John Cahill could address it. And I kept a log and, and in the book I, I actually share the log of what happened daily or at least monthly so that people can understand the progression and the context of everything that's happening.
Meryl Comer (02:52):
Let me reinforce that is so important. I used to type up my observations and take them with me to the doctor, never wanting to talk in front of my husband. So it is that dance we do again to protect their dignity, but also to inform and we are closest to the bedside and we know that. Can you describe, because you are very candid in the book about how the disease progresses because it does involve mobility?
Mary Lou Falcone (03:22):
Yes, absolutely. With Lewy body, with Parkinson's, I mean it's, it's two diseases that you have together. Basically it starts with a leg dragging. In Nikki's case, it was the right leg that would drag. And I would remind Nikki that that the leg was dragging and he would correct it only to have it drag again. He also had problems with his hands. He couldn't open a jar, he couldn't open a bottle cap. It got to the point where he couldn't cut his meat. Remember there was one dinner with a group of friends and this was a large group and this was not so far into the diagnosis. And I noticed that a very kind colleague of mine sitting to his right, just very gently reached over and cut all of his meat, didn't say a word, just did it. And I thought to myself, what a beautiful gesture of kindness. So the hands were a part of it. Eventually the swallowing becomes difficult. So it's all of these things that are physical issues. There is the REM sleep disorder where you are acting out in your sleep, there was cramping in his legs. All of these things just would happen and then dissipate happen and dissipate. And of course then you get into the incontinence, both the bowel incontinence and the urinary incontinence.
Meryl Comer (04:41):
Mary Lou, what part of Nikki did not change over the course of the disease?
Mary Lou Falcone (04:46):
That is such a beautiful question and it makes me smile to answer it. What never changed was his love for me. Even when he didn't know who I was, I would say, Nikki, do you know who I am? And he'd say, no, but that's okay. And there must have been something about the tone of the voice or the touch that made him feel okay. And that love is something that never waned.
Meryl Comer (05:13):
Was it an active celebration to thread Nick's cartoons and art through the book as the disease progressed?
Mary Lou Falcone (05:21):
Nikki's work became very serious the last 10 years or so of his life and, and he went into painting. The last work that he was drawing was a very large canvas. It's about four feet by three feet and it's a man on a Ferris wheel ready to jump off, commit suicide and screaming. It is so powerful. It never got finished. It was in charcoal form. I still have it. I still have it hanging because he was working on it for two years and could never finish it. My assessment of it is that that was his version of the scream. It was his letting out what he was feeling inside, but he couldn't finish it because only death would finish it.
Meryl Comer (06:09):
It gives you chills and reminiscent of Robin Williams' journey because
Mary Lou Falcone (06:15):
He didn't know he was misdiagnosed. I believe he was diagnosed with Parkinson's, which indeed was so, but that wasn't the totality of it. And evidently when they did the autopsy, they found that it was one of the worst riddled brains with Lewy body dementia that they had ever seen. And if he had known, might it have changed the course of his life that we'll never know.
Meryl Comer (06:38):
And that brings up the point of the critical nature of early diagnosis.
Mary Lou Falcone (06:43):
Yes. First of all, the two questions that I get are Louis, what and how do you spell that? Well, if you can't spell LEWY, Louis, you're never going to find it. That's number one. And I can't tell you how many incredibly intelligent people were not able to find it after they heard what it was. So our first job in this, if you will, is to heighten awareness to make people aware that this is a real disease. It exists, as you said early on. It's 1.4 million Americans who have Lewy body dementia, and it's the second most progressive form of dementia after Alzheimer's. Those are huge stats. And they're now finding, especially in autopsy, the comorbidity factor, I think it's 30 or 40% of those autopsy for Alzheimer's have Lewy body present also. So you know, you can get double and triple whammies on this stuff.
Meryl Comer (07:42):
I will share that I recall a doctor 20 years into my husband's illness reviewing his chart because he was retiring and said, oh, I think I may have made a mistake. I think it was frontal temporal and not Alzheimer's disease. And I said to him, doctor, I don't care what you call it.
Mary Lou Falcone (08:01):
Yeah, exactly. It is a disease and it's robbing a person of almost everything in life. Slowly and surely, I truly feel that it's important to know that dementia is the umbrella term for all of this. And then the spokes that go off of it are these different types of dementia. Why is it important to know which type it is? Because Medications, the ones that are available can either do good or harm. For instance, with Lewy body dementia, if somebody with Lewy body dementia is given Haldol. And that's what happens if you go to the emergency room and your, your loved one is having a real problem, the immediate thing they give is Haldol. And Haldol can cause a psychotic break. And you don't want that to be given. But if you say to the nurse, he has Lewy body dementia, so please don't give him any Hal, do they look at you as if you have three heads? Because A, they probably don't know what Lewy body dementia is. B, you are the lay person, so what do you know? And C, that's what they do for everyone because Haldol is an inexpensive drug. I advise people if they have to go to emergency, say your loved one is allergic to Haldol, they're never going to give something to someone who has an allergy to it. And that way you avoid the issue completely. But it's important to know about which dementia you've got for many reasons. But one being that the meds are really important.
Meryl Comer (09:31):
Mary Lou, I'd like to move to the caregiver journey and there's an old Bob Marley line – “you never know how strong you are until strong is your only choice.” I had to paste it on my computer for years. Define caregiver as you use it throughout the book, because you've really written a love story as well.
Mary Lou Falcone (09:51):
Thank you for saying that. I feel it is a love story. Caregiver for me is the person who pays attention and cares enough to share every inch of life in the good, the bad, and the ugly.
Meryl Comer (10:09):
Let me give you another term which becomes very sensitive, and that is the word burden. We both know that caring for a loved one with the disease involving their brain, whether it's Alzheimer's or Lewy body, is very challenging.
Mary Lou Falcone (10:24):
It is challenging. I don't subscribe to the word burden in this instance. I think that now I'm going to sound a little Pollyanna-ish. But it is really what I believe that you're not given more than you can deal with in life. And your responsibility is to accept the gifts. And when you have to deal with something that's unpleasant, that takes your breath away, sometimes that makes you sad. The other side of that is you're being given a gift, the gift of caring enough to make a difference in the quality of life for someone else. And that's my choice. I mean, I think we all have choices in this, and I feel blessed in that I was given the strength and I have been for 78 years, I have been given the gift of strength. And that strength then translates into other gifts, the gift of caring enough to really take care of someone else and want to do that.
Meryl Comer (11:27):
Now you have described how you handled behavioral issues in a very delicate way.
Mary Lou Falcone (11:35):
I think I know where you're going.
Meryl Comer (11:36):
What advice do you give to other caregivers in managing these behavioral issues? Again, because you're trying to protect a loved one's dignity at the same time. Yeah,
Mary Lou Falcone (11:47):
I think that dignity above all that I put as a primary, I also think that when issues arise, I would suspect that you're heading toward the issue of sexuality. And nobody talks about this. Incontinence is bad enough. People don't want to talk about it, but it happens. And you deal. I mean, you deal with it with a baby, don't you? You don't think, oh, this is awful. You. You just say, yeah, this baby is helpless and I have to help. And sometimes at the end of life, your loved one is helpless and you have to help. And I don't see much of a difference very honestly. But the area of sexuality, however, does take its path. And I think people don't talk about it because they're embarrassed by it. I think people don't talk about it because they don't know what to do about it. In our case, Nikki was a very sexual being and he had that drive and that energy.
Mary Lou Falcone (12:42):
I also think that for men in particular, it might be the last vestige of what they can control. In our case, it turned into a phone situation where somebody surfaced in in his life. After 25 years, I actually, I still don't know how she surfaced. Whether he had called her or she had called him. It doesn't matter. And they would, they would chat. And I knew that he enjoyed these conversations. What I surmised after a time is that the conversations were sexual in nature and that this was comforting to him and to have these fantasy briefs that they were engaging in. And I thought to myself, whoa, this is tough sledding. Because as you know, Meryl, as a caregiver, energy is energy. You have to expend your energy where it's going to count. And that's in the caregiving in the day-to-day functioning in making sure there's safety, all the things that need to be done.
Mary Lou Falcone (13:37):
What you don't generally have the energy for is sex. You just don't. You have loving feelings. You are passionately in love with the person, but it is not the same passion as when you were 30 and 40 and 50 years old. And therefore it precludes the activity that once was part of your everyday life. And so if someone else is providing some solace, my contention was that is okay. And it was so okay that even when Nikki couldn't dial the number, I dialed it. I put the phone in his hand and I left the room because that was my gesture of love that I could do. Did I love it? Of course I didn't. But did I understand how important it was? Yes, I did. And I encourage anybody out there who's facing this kind of thing, to look at it squarely as the need of the other person, not your own need.
Meryl Comer (14:39):
Your candor is so important. I recall being so incensed when the headlines in the papers talked about Sandra Day O'Connor's husband in a facility with a new girlfriend. Why not educate people about the nature of the disease?
Mary Lou Falcone (14:55):
It does go back to one word, Meryl, and that word is love. If you really and truly love, then you allow what needs to be to be. And you don't go into the place of being selfish because it's not about you.
Meryl Comer (15:12):
On that point about selfishness, many times you forget who you are in the process of taking care of a loved one because it is so consuming. How would you recommend caregivers take care of themselves without feeling selfish?
Mary Lou Falcone (15:27):
First and foremost, the person for whom you're caring can never see the frustration, the anger, the angst that you're feeling. And so it's important to take a deep breath and to be the most compassionate you that you can bring to the situation. However, that's not taking care of you. So my remedy was, and I advocate this to go into a separate room. In my case, I would walk across the hall to my office and I would scream the F word at the top of my lungs. I can only imagine what my neighbors thought, but I didn't really care. And you know, if you say heck or darn or, it doesn't release what needs to be released. If you use the F word, which I do not in real life, but I did, then it explodes. That's what I advocate because it needs to be done.
Mary Lou Falcone (16:23):
And also writing about it, as you said, you wrote about what was happening for the doctors, and I did as well. And that's why I started that kind of writing was for the doctors. But I realized that I was also doing it for myself, that it was my way of getting this out. And when I sat down to write the book and never thought I'd have to go back to those notes again in my entire life, and I sat at this computer and with tears streaming down my face, reliving all of it. It was cathartic and needed to be.
Meryl Comer (16:53):
Now, I would consider the advice you just gave as survival training for caregivers, <laugh>. Are there any other techniques that you might recommend you
Mary Lou Falcone (17:03):
Do? Anything that's going to make you feel human? Now, in my case, it was during the pandemic, so I couldn't bring anybody in. I didn't dare bring a caregiver in when I needed one because it was too dangerous. So I would arrange a day so that I would do the walk with Nikki. We would walk down to the river, we'd walk to the park. When that got to be too much, I got a transport chair. I lied and said it was a gift from our doctor because I knew that's the only way he would accept it. And so you find all these little survival techniques that are meaningful.
Meryl Comer (17:35):
There is the line, the power of purpose. Why is it so important to spread awareness for you now? How are you changed by this life experience?
Mary Lou Falcone (17:47):
When I was in trouble and didn't know where to turn, the Lewy Body Dementia Resource Center and its founder, Norma Loeb became my lifeline. And I vowed that when I was finished with this part of the journey, that I would join in whatever way I could to be helpful. Why? Because it's only awareness that's going to create the kind of forum where the amount of recognition that this is a real disease in real time and affect many millions of people, that it will be able to be researched.
Meryl Comer (18:23):
I used to say that being an advocate saved my life because no matter what I did at home for my husband and my mother, the disease was going to win. But fighting it gave me a strength and leveled the playing field in a way that I didn't feel at home.
Mary Lou Falcone (18:41):
I understand that. And I don't have millions and billions of dollars to throw into research. Somebody does. Somebody out there does. But they have to know that this matters, that this counts and that it's needed before that kind of Lars is going to be thrown at this disease in order to help cure it.
Meryl Comer (18:59):
Mary Lou, thank you so much for your time and candor that really speaks to the power of your book. As international music artist Renee Fleming wrote, beyond being a central reading for those, caring for someone with Lewy body disease, I didn't see it coming as a beautifully rendered inspiring chronicle of determination, resilience, and boundless love.
Meryl Comer (19:24):
Our guest has been Mary Lou Alcon, her memoir, I didn't See It Coming. Scenes of Love Loss and Lewy Body Dementia. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now we'd like to hear what's on your mind, what are the topics and guests you'd like to hear featured on? Brainstorm? Send your comments to BrainStorm@usagainstalzheimers.org.
Speaker 2 (20:09):
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