Alzheimer’s, Dementia & the Stories That Help Families Cope

What role can stories and literature play in helping families navigate Alzheimer’s disease and dementia?

In this episode of Advice From Your Advocates, elder law attorney Bob Mannor speaks with Marianne Sciucco, a registered nurse turned author whose work focuses on Alzheimer’s, dementia caregiving, and the emotional realities families face during the disease.

Marianne shares her unique journey—from working as a nurse caring for dementia patients to becoming the author of the novel Blue Hydrangeas, an Alzheimer’s love story inspired by real-life experiences with patients and caregivers. She explains how witnessing the struggles and devotion of families living with dementia sparked the idea for her debut novel and eventually led her to help create AlzAuthors, a global community of writers sharing personal stories about Alzheimer’s and caregiving.

Together, Bob and Marianne discuss:

Why stories about Alzheimer’s and dementia are powerful tools for caregivers
The inspiration behind the novel Blue Hydrangeas
How the AlzAuthors community connects caregivers, families, and writers worldwide
The growing collection of books about dementia and caregiving
Why children’s books and young adult literature can help families explain Alzheimer’s to kids
Marianne’s podcast Untangling Alzheimer’s and Dementia and the voices of caregivers and people living with the disease

Marianne also shares an important message for families navigating dementia: you are not alone. Through community, storytelling, and shared experiences, caregivers can find understanding, resources, and hope.

Whether you are a caregiver, family member, healthcare professional, or someone interested in dementia awareness, this episode offers insight into how storytelling can help people better understand the Alzheimer’s journey and find support along the way.

Learn more about Marianne’s work:

AlzAuthors: https://alzauthors.com
Author website: https://mariannesciucco.com

Host: Attorney Bob Mannor

Executive Producer: Savannah Meksto

Asst. Producers: Shalene Gaul, Samantha Noah

Transcript

Show Welcome And Guest Intro

SPEAKER_00 0:00

You're listening to Advice from Your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families. Welcome back to Advice from Your Advocates. I'm Bob Manner, and I'm a board-certified elder law attorney in Michigan. And today we have a special guest, Marianne Schuko. Her debut novel was Blue Hydrangeas, an Alzheimer's love story. And she also co-founded a website for other authors that deal with dementia and Alzheimer's, and it's called Alz Authors.com. And she also has a podcast in dealing with this. Her podcast is Untangling Alzheimer's and Dementia. So welcome, Marianne.

SPEAKER_01 0:41

Thank you, Bob, for inviting me to be on the show.

From Reluctant Nurse To Writer

SPEAKER_00 0:44

So can you just tell us a little bit about yourself and your work with fiction writing and nursing?

The Real Couple Behind Blue Hydrangeas

Why Alzheimer’s Fiction Was Hard To Publish

SPEAKER_01 0:50

Sure. Registered nurse. I came to the profession reluctantly. It was not anything I ever aspired to do. I wanted to be a writer. When I was in high school in the junior year, my guide's counselor took me into the office and said, you know, well, what do you want to do? And I said, I want to be a writer. And he said, Well, I think you you'll you'll be a good nurse. You can be a nurse or a teacher or a secretary, but I think you'll be a good nurse. And I said, No, I'm not doing that. So I never wanted to do that. So anyway, you know, life has a different way of working out sometimes. So I set out getting learning how to be a writer, and I did a some writing work. I did some journalism. I worked for some local newspapers. I was able to make some money, which which was a good thing, which ended up really helping me when I decided to write a book later on. I knew that I could write well enough to get paid. So that was important. But I just could not get that, you know, that full-time job that I was looking for in newspaper work. So I needed to reevaluate what I wanted to do when I tried some things that didn't satisfy me. And at the time there was a nursing shortage across the United States. They were dying for nurses. And I wanted to be in a profession where I could help people. So I thought, well, maybe Mr. Firing was right. I will see about becoming a nurse. So the first thing I did was I went into long-term care and I was a nursing assistant, and I ended up working on a dementia unit, caring for people with dementia, late stages. And most of the people that worked there, they didn't want to go up there. They thought it was a terrible place to work if you were sent to work up there. And they made it sound horrible. And one night I got sent to work up there, and I was afraid. I didn't know what to expect. But when I got up there, at the end, by the end of the night, I decided I really like it up here. This is actually kind of fun. And I ended up working there permanently. I ended up working on a day shift, and they had a really great program there where they would call a leisure workshop, and they would send people to this workshop where they would have um orientation activities and things to keep them busy in the mornings. And so I I helped out with that and I got a really good taste of what it was like to care for people with dementia. So I ended up going to nursing school. I became an LPN first, and then eventually an RN working in the hospitals. I mean, hospital nursing, pretty much, you're always going to be exposed to people who have dementia. So that continued on, and eventually I became a case manager. And so case management work was a lot of working with families, trying to find resources to help their family member, whatever their situation was, and dementia was a huge part of it. So that's how I became introduced to the couple who inspired the characters in my book. Jack and Sarah. So Jack and Sarah had driven Yeah, Jack and Sarah. The um were snowbirds. They would um in the real Jack and Sarah, that's not really their names, but this couple, they were snowbirds. And so they went to Florida and I lived in New York, and they would come back and in the spring, and when they came back, she fell at home and she fractured her pelvis. And she was just what you call like pleasantly dementia pleasantly dementia. She had a wonderful her disposition. She was just sweet and charming and laughing and was just a joy joyful. And her husband, he was very frail. They were quite elderly, they were in their mid to late 80s, and he was very frail and physically but mentally intact. And I was just marveled at the fact that they were able to drive from Florida to New York, which is like an 18-hour trip on their own. It was amazing. So then her plan was to leave uh the hospital uh rehabilitation unit where I was working and go to another place for more long-term care to get her up and working again. So her son was with them and he said, Can I take my parents? I want to drive my mom to the place tomorrow. I don't want my father to take her. I said, Well, that's fine, you can do that. That's not unusual. So after I left them, I couldn't stop thinking about that family and thinking about her and him and everything. And I thought to myself, gee, I wonder what would happen if something went wrong and he the husband ended up taking the wife out and put her, you know, in the car and to take her to this place. He doesn't want to bring her there, but he has to. He know he understands that much of it. And something happens and they end up lost and missing. Oh boy. And they don't go. So I started planning the story and it morphed into so many different things. And it was my first book, and it took me a long time to write it. But in the end, I came up with a pretty good story of them talking about what what it was like for them for her to be diagnosed, what he did, because it wasn't a lot of it was more mainly from his point of view, and you know, the scenes where they do go missing, they get lost. They I moved them to Cape Cod, so that's why it's called Blue Eye Dranges, because the Blue Eye Dranges there are beautiful. They end up in Provincetown, which is like the furthest point that you can get out to over there. And it ended up triggering a lot of different things for me and kind of changed my life in ways I didn't anticipate. So I'm gonna publish the book in 2013. It took me nine years to publish it. At the time, nobody wanted to publish books about Alzheimer's. I put out a lot of queries and asking around and trying to get publishing. But like, no, books about Alzheimer's, they were not we didn't want that. Nobody wants to read about it, which was kind of I thought was kind of crazy. But you know, it really did ring true because when I was doing research, there weren't a lot of books about this, and there certainly wasn't a lot of fiction. The most popular one at the time was The Notebook by Nicholas Sparks, which kind of like should have like triggered something in some in minds because it that's like you know, such a popular book. It became a movie, people still watch it, so people still read it. It's like huge. He became a huge success off of that book. It's uh very important topic. And so as time has gone on since then, now 16, 17 years later, there are a lot, a lot of books about Alzheimer's in dementia right now that people can get.

Building AlzAuthors Into A Community

SPEAKER_00 6:52

And so that's kind of like spurred me on to start Alzheim Authors with some other authors, and it's allsauthers.com. So tell us a little bit about how you guys decided with the other authors to have a space for authors that are writing about dementia and Alzheimer's and things like that. And and then tell us a little bit about the website and what it does for the authors that are interested in that.

SPEAKER_01 7:19

Sure. All'Authors is more than just a website. It's actually a community where the global community of authors writing about Alzheimer's and dementia from personal experience to light the way for others, which is a mouthful. Key word in that is personal. These are books that are written by people who have been on their very own dementia journey, whether it was for a parent or or a spouse or somebody else that they that they cared for and that they were involved with, either as a primary caregiver or maybe, you know, even on the periphery. Some of them are professionals who have devoted their lives to working with people with dementia, and some of them are professionals who have done that but also had their own personal dementia story. So that's that is the most important thing about what we do is we look for those kind of books. Now, when I was researching for my book, there was very little out there. I think I found two. And a lot of the books that you could find were like caregiver guides or some advice on like disease process and drugs and all these things. But what people were looking for are caregivers, they wanted to read stories about other people who kind of were in their shoes and how they handled it, what they did, did they make it? And people really learned a lot more from others. This whole sharing thing. One of our mockers is sharing our stories makes us stronger. Many people don't share their caregiving for someone with Alzheimer's. There's still a lot of stigma attached to it. So what we tell people is that you know, when you share and you speak with people, you're gonna discover other people that you know who are stuck in the same situation, and together you can share notes and resources and ideas and strategies and all of that. And so it's very it's important not to keep it quiet. So we uh the three of us, it was me and uh Jean Lee. She wrote the book Alzheimer's Daughter, and then Vicky Tapia, who wrote Somebody Stole My Iron, a Family Memoir of Dementia. We had met online. I Jean had reached out to me because she read my book and she really loved it. She was on her own journey with two parents at the same time. And she wrote to me to tell me how much she liked my book, and then that was very nice, and then she had written her own book. So I read the book, it was fantastic. I really thought it was a great addition to what was out there, which was not much. And I said to her, Would you like to work with me? She agreed, and I said, Who else do you know? And she says, Well, I know Vicki Tapia. So she got in touch with Vicky and said, I'm gonna work with this author and we're going to promote our books. Would you like to join us? And Vicky was like, Well, why do I want to work with other authors? I'm kind of working with the competition. But when we explained it to her that, you know, three voices are more powerful than one, she saw the light and she said, Yeah, I do want to be a part of it. So we decided to do this one month promoting each other's books, and we did blog posts and we did social media and all of that. And when it was over, we found that we really liked each other and we liked to work together. So we did it again in November that year, because November's Caregiver Appreciation Month. So we said we had two campaigns now behind us. And when the next year rolled around, I said, why don't we do something different? Why don't we go bigger? And we'll we'll just start promoting other books about Alzheimer's and dementia. We'll do it in in June. We'll do it Monday to Friday, every day, a new book, and we'll do it on a blog, we'll start our own blog because we didn't have the Alzheimer's authors at the time. But I said, we'll start our own blog. We'll call it Alzheimer's Authors. And they were like, Oh, what a great idea. This is great. How are we gonna find 2020 people to write for us? Oh, that's that's gonna be hard. So we started, we reached out to people that we knew. You know, we looked up the best books on on Alzheimer's from personal experience, and we found reached out to the authors. And a lot of these people, they're ordinary people, they're not represented by big publishing houses, they're not famous, they're not celebrities, they're caregivers, and they wrote a good book. So we uh reviewed the books and and we invited them to join us. And the next thing we know, the month is it comes to an end, and we still have people wanting to be a part of this thing. So then we said, What are we gonna do now? Well, let's just keep it going. We'll do a one a week, and we kept that up for many years. Then we started the podcast in the middle of all of this. So the reason we thought we'd do a podcast, somebody kept pushing us to the podcast.

SPEAKER_00 11:39

Before we get to the podcast, yeah, let's we'll talk about the podcast in a second. Before we get to the podcast, I want to talk a little bit more about the website all the authors. So not only is it for the authors, but it's for anybody that's interested in this topic and and wants to find, you know, the books. Like you say, even though now there's more books about Alzheimer's and dementia and and even novels and things like that, that this would be a place for non-authors to go to find those books. Is that right?

Books That Help Kids Understand Dementia

SPEAKER_01 12:10

Exactly. Started out, it's got it we it's two prongs. So we serve authors in the sense that we give them a platform to put their book where people who are looking for that kind of book are gonna go. It's just for that. Right. I believe we are the only organization that has a website devoted to books on a disease topic. Not only that, but we also present the authors through their blog post. They write for us a blog post for every every one of them and it introduces readers to to this person and to their story and why they wrote it and what people can get from it. So they get a lot, and then of course, they many of them do have the podcast attached to it. So that was like what we set out to do. We wanted to help the authors, but then on the other hand, we wanted to help the people who are in their journey and maybe overwhelmed and confused themselves and just not knowing where to go, what to do, how to get. I want a book about I want to read a book. Where do I find a book?

SPEAKER_00 13:09

And then when you go to like a bookstore, I noticed on the website that there's a number of books even for children.

SPEAKER_01 13:16

Yes.

SPEAKER_00 13:17

Which I think is particularly interesting and often very difficult for children. I know my kids, they just weren't sure how to process my mom's Alzheimer's. When we would visit, they just weren't sure, you know, and and they didn't ask as many questions as I would have liked them to. But they I think a book, even especially a novel, you know, would be very helpful for children to kind of help them process if their grandparent or someone they love is dealing with Alzheimer's or dementia.

SPEAKER_01 13:46

Absolutely. It's very important for children to be involved. Like a lot of people's uh attitude is that they want to shield their children from this, but they're involved. But whether they're a part of it, you see that they're a part of it or not because their lives are impacted by what's going on. They see their parents doing whatever they're doing. So I mean, if your mom is going out every night to help her mom get ready for bed, she's not home with you. Where is she? What is she doing? So they have questions. And when they see the grandparents and maybe their grandparents are confused and doing strange things and saying strange things or repeating themselves, or they don't know who they are, then that's frightening to children. They become confused. So the books in the collection, and we have a lot of them, and there are a lot of different kinds of situations and ethnicities and and all of that. You can find books that you can sit down and read with your child, that you can explain and open a conversation. All the books are meant to open up a conversation. And we do have young adult books as well, novels that preteens and teens can read so that they can also understand what's happening.

SPEAKER_00 14:48

Yeah, it seems like this area has really kind of exploded. And it's you mentioned it at the beginning there just weren't very many books, and now I think maybe with your help, that there's you know uh a lot more options for folks out there that are interested in in reading about us.

SPEAKER_01 15:04

Yes, we have almost 400 books in the collection.

unknown 15:08

That's great.

SPEAKER_01 15:08

Some of the authors have written more than one and multiple genres and multiple situations.

Untangling Alzheimer’s And Dementia Podcast

SPEAKER_00 15:14

Now you have a number of books also not that are dealing with different things like mental health and and other health-related issues. Give us an idea of some of the other novels that you've written.

SPEAKER_01 15:26

Well, I wrote a young adult novel. It's called Swim Season, and it's about a high girls' high school varsity swimming team with a potential Olympic hopeful as the main character. Her mother is a nurse who goes over to Afghanistan during the war to help the soldiers and comes back with injuries and PTSD opioid addiction. So that yeah, so we explore that. And she ends up her mother ends up getting caught taking drugs from her employer. Like she's supposed to give them to patients, but she keeps them for herself. She gets caught doing that and ends up being sent to jail with a rehab unit attached to it for offenders like that. So it gets into a lot of that. It's very deep. I also have one character who's very elderly, dealing with a little bit of cognitive impairment, diabetes, congestive heart failure, things like that. And then I also wrote two prequels to the book, Blue Hydrangeas, that take place prior to the diagnosis of Alzheimer's.

SPEAKER_00 16:25

Yeah, that's really interesting to I I imagine that that could be something that if people really liked your Blue Hydrangeas book, that they would like to know, you know, what happened earlier in these characters' lives. So that's very interesting. Let's talk a little bit about your podcast, Untangling Alzheimer's and Dementia. So you said you're on hiatus right now, but you'll get back to it maybe under a different name. But tell us about how that came about and you know a little bit more about that podcast.

SPEAKER_01 16:53

Sure. I was approached by Christopher McClellan from the Whole Care Network with the idea of doing a podcast. And at the same time, we were coming to the realization that the average American reads less than 12 books a year. So we were kind of like struggling because we really wanted to find people to find the books and want to read them. So we said, well, maybe we should do a podcast. And then they we voted on it and everybody said, Mary Ann, you should do it. So Mary Ann learns how to do a podcast. So we were very fortunate, unlike a lot of podcasters, that we already had hundreds of authors affiliated to our site who could be interviewed. So I didn't have to look for people to interview. We just went right into the author base and put it out, you know, would you like to be on the podcast? And everybody was like, Yeah. So we did we did over 150 episodes. We've been doing it for five years. We interview the authors, they tell their stories, and it's, you know, to help promote the book, but be for people to walk away with some type of knowledge that might assist them. But we also did panel discussions. We would get four or five of them together on screen and have a conversation, and we would record those as well. So people can hear those. We did a beautiful one with people actually living with the disease. We have a handful of authors who actually have Alzheimer's and wrote their own book. Yeah. So we have interviewed them two or three times. So that's a really valuable resource for people to hear people with Alzheimer's Dementia talking about their experience.

SPEAKER_00 18:16

So I appreciate all the work that you do. And again, the podcast is untangling Alzheimer's and dementia. And look for it in the future. We're first of all over 150 episodes. So there's a lot, a lot of content there, and there will be some version of that in the future and allsauthors.com and check out the book Blue Hydrangeas and its prequels. Any takeaways that you'd like to leave our audience from our discussion?

SPEAKER_01 18:42

Sure. People who are on their own dementia journey, whether it's they're caring for someone or they are the person with dementia, need to know that they are not alone, that there are people all over the place who are also on a journey. So it's important to reach out, reach out into your community, find out where the resources are. Pretty much every county has resources. You can find support groups, you can find them at local care facilities. They often offer a support group that's open to the public, the Office on Aging, your local library. There are resources. So just remember that you are not alone and sharing our stories makes us strong.

SPEAKER_00 19:24

Absolutely. And so if you want to learn more about Marianne, we've talked about allsauthors.com, but you also have your own personal website. It's Marianne Shuco.com. But the spelled specific way. But Shuko is S-C I U C C O.com. Thanks so much for coming on the podcast today. If you enjoyed this podcast, don't forget to subscribe. Listen to advice from your advocates on any place that you find podcasts, or you can go to our Lumffice website at mannerlumgroup.com, or you can check us out at the Mannerlum YouTube station. So and again, until next time, thank you for listening.

SPEAKER_01 20:18

Thanks for listening. To learn more, visit mannerlumgroup.com.