POETRY FOR THE DEMENTIA JOURNEY: Marianne Sciucco, Ann Campanella Sue Fagalde Lick

In Episode 92, Don and I talked with three prolific writers who have made profound literary  contributions to the Dementia community and now pooled their talents and love of poetry to launch a beautiful anthology, “Poetry For the Dementia Journey”, that sprung from an online event featuring over 30 poets. (This just may be one of my favorite episodes!!)
Marianne Sciucco is not a (dementia) nurse who writes but a writer who happens to be a nurse.  Her novel, Blue Hydrangeas, an Alzheimer’s Love Story, is a testament to the power of love in the face of this heart wrenching disease.  She has since launched her own podcast “Untangling Alzheimer’s and Dementia: An AlzAuthors Podcast” and is the Co-founder of the non-profit AlzAuthors.com, a global community of over 300 dementia-centered writers.
Ann Campanella is the manager/director of AlzAuthors and is a former magazine and newspaper editor. She is the author of two award-winning memoirs and four collections of poetry. Her first memoir, Motherhood: Lost and Found, tells the story of her mother’s descent into Alzheimer’s and was named “One of the best Alzheimer’s books of all time,” by Book Authority two years in a row.
Sue Fagalde Lick has

Transcript

Don Priess: 0:00

When the world has gotcha down, and Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love Conquers Alz. A real and really positive podcast that takes a deep dive into everything Alzheimer's. The Good, the Bad, and everything in between. And now, here are your hosts Susie Singer, Carter, and me, Don Priess

Susie Singer Carter: 0:39

Hello, everybody. I'm Susie Singer Carter.

Don Priess: 0:43

And I'm Don Priess. And this is love conquers all calls. Hello, Susan.

Susie Singer Carter: 0:46

Hello, Donald. How's it going? today? We're having a great day. We're having a great day having a super fun day. You know, it's it seems to be even though we don't know when people will be listening to this. But for us, it's Friday, which means absolutely nothing, because we work all weekend anyway. So yeah, Happy Friday. Happy Friday to you.

Don Priess: 1:08

Yeah. So what are you looking forward to doing?

Susie Singer Carter: 1:13

No, I don't have anything to look forward to. That's really exciting. I think. No, I mean, it's boring, because we're talking about the same stuff about some tedious work that we're doing on the on the documentary. But again, we you know, by the time you hear this, maybe we'll be finished, maybe we'll have distribution that we can announce. But as of right now, we're working with a legal team to clear everything so we don't get sued for you know, in expose days, a little background on expose days, we didn't know is that if you don't clear every little minutiae of your project, you you leave yourself very vulnerable to lawsuits, and for slander, liability, all those yummy things. So you have to hire a very expensive team of lawyers that, you know, forensic ly go through the project with you and make you do lots of changes and things so that you're protected. And then you get insurance and, and it all costs a lot of money. So it does

Don Priess: 2:17

show every question. Sometimes we like have a question for them. We go, oh, no, no, no. If we type this email and ask them this question, that's gonna be $400. So let's not ask that question right now. Honestly, like, yeah, it's really, it's really scary. Like, you know, we've raised all this money ourselves, and we think, Oh, we have plenty for our mixes and the pretty stuff, all the polishing that we need. And then it's like, you get a bill for, you know, a half a week and it's$2,500. What How did that happen? Where did that happen? We didn't even we talked for two minutes. Yeah, it's super expensive, but they're they're really they're great. They're very good God for them because in the long run down the line, this is cheap insurance, if you will, because you know Yeah, everyone's litigious so yeah, and even though we're not just have to have enough for my bodyguard, I have to get enough for my bodyguard.

Susie Singer Carter: 3:14

Susie's

Don Priess: 3:14

Susie's gonna need a bodyguard. You know, because the lobby is coming after her after they see this be even because they don't want to they don't want everyone to know what's going on. So yeah, look at

Susie Singer Carter: 3:30

the new Aaron Bronco is on? He's on the prowl. Okay, no, I don't care. This is my purpose. What are we going to do? Yeah, you know,

Don Priess: 3:42

just go for it. That's what I see. Yeah. Be bold, big and bold. So yeah. So if you if you are, if you have any need for a tax deduction, we're still in the market for a little bit more support for our project after we've got our last bill from the lawyer. So please, you know, head on over to the national consumer voice and we're on their front page, and you will find a way to make a donation if you're so inclined, and we would be very so grateful for your help is 100% tax deductible, because they are our fiscal sponsor. And so it's a win win. It is a win win. All right, and no one else is a win win. It's actually a win win win.

Susie Singer Carter: 4:30

Today that's a win.

Don Priess: 4:32

We're loaded with guests and they're fantastic. And I'll tell you more about them. I'll right now. Marianne Schuco is not a nurse who writes but a writer who happens to be a nurse, a nurse who has cared for hundreds of dementia patients over a 20 year career. Her novel blue hydrangeas and Alzheimer's love story is a testament to the power of love in the face of this heart wrenching disease. Ironically, two years after her novels publication, she started living her own story when her stepfather was diagnosed with mixed dementia. She's become a prolific writer, and also launched her own podcast, untangling Alzheimer's and dementia and all authors podcast, and she is the co founder of the nonprofit all's authors.com, a global community of over 300 writers who are writing all about dementia from their own personal experience. And Campanella is the manager and director of vols authors, and as a former magazine and newspaper editor. She's the author of two award winning memoirs and four collections of poetry. Her writing has appeared in newspapers, magazines, literary journals, and online sites all around the world. Her first memoir, motherhood Lost and Found tells the story of her mother's descent into Alzheimer's at the same time and was trying to become a mother and dealing with a series of miscarriages. This memoir was named one of the best Alzheimer's books of all time, by book authority two years in a row. Su frugality lick is a prolific writer of books, poems, essays and articles. She has been nominated for the Pushcart Prize and both fiction and nonfiction and won first prize and Willamette writers case, no awards for poetry, a former president of the Silicon Valley branch of California writers club, and writers on the edge. Sue is co founder of the Central Coast chapter of Willamette writers and former President of the Oregon poetry Association. She has taught workshops in article writing, creative writing, and publishing across the country. And coming June 25 2024, Sue is releasing her latest work no way out of this a memoir about Sue's Alzheimer's journey with her husband. Today, they're all here to talk about poetry for the dementia journey, a beautiful anthology that sprung from an online event featuring over 30 poets during National Poetry Month. And to find out more about this wonderful creation. Let's say hello to Marianne Schuco. And Campanella, and sue for galtee. Lick. Hello, hello.

Susie Singer Carter: 6:59

Wow. Hi, ladies. Thank you for coming here. I'm so impressed with all I like all of your biographies are so impressive, and I don't even know where to begin, are talking about your poetry. But there's so much to talk about with everything else you've done, that it's extraordinary office jump in, if you don't mind and just say I let since since Marianne, I feel as is the troop leader here because I know her the best I'll say, Mary, and how did you? How did you meet Anne and Sue? And how does this collaboration of poetry come together with the three of you? Well,

Marianne Sciucco: 7:38

Well, it this was a long time in the making. I started AlzAuthors and back in 2015 was to other current members of our team. And he joined us about a year or so after we got started, she discovered us somehow you can probably tell that better than I am. But she discovered us and I wanted her book to be a part of also author's mission. And, you know, yes, definitely, and joined us in that way. But she also wanted to do a little bit more and volunteered the use of her editorial and writing skills to help out, you know, and then next thing, you know, she's on the board. And so she's been a board member for many, many years now, and is kind of a guiding force in many of our projects. She works on the custom caregiver collections. And right now we're redoing, we're getting a brand new website. So she's been like behind the scenes helping to finesse that. And then sue came into the organization maybe a couple of years ago was her book of poetry, gravel road ahead. That's usually how author joins us is, you know, they discover that we spotlight these books and promote them for free. Pretty much we now charge a small submission fee. But in the past, we didn't. So people couldn't would join us and kind of not, not really, I don't think understanding the depths that they could become involved in. It's not just a place to park your book, but it's a community of other authors and other caregivers. So Sue joined us and came to some of our events and was, you know, flooding around the edges. And ironically, she wrote to me a few months back, telling me that she had just completed her term as president of the poetry club that she was in and she had some free time. And did we have any projects? And I said, Yeah, I'm putting together a poetry book. And I knew that she had published several. So I was like, Would you like to help us publish our poetry anthology? She said, Oh, yeah, she jumped right on it. And she worked really hard putting putting it all together for us. So we appreciate that so much, because you know, we all work for free here at all authors. We're a nonprofit, and nobody gets a paycheck. But we all have really strong My desires and passions to tell caregiver stories and to help people that are currently on a journey.

Susie Singer Carter: 10:07

Absolutely, I mean, it's so incredible what you do, because you created this community of writers and literature that, you know, is directly in support of caregivers and, and in particular dementia. But caregivers in general, really, and and, and it's, it's extraordinary, because, you know, like, like all of us, we all, like our podcasts, you know, it's all done as a labor of love. And it comes out of our own experiences. And it's and, and it's what we bring to the table is our experiences. And that's what is powerful, in that sense, powerful, and all your books, and you've really, really, you know, branded yourself as, as the the destination for these kinds of, of stories. You know, I hear it from people all the time, like, oh, you know, you know that people from all authors, can you get me an introduction? You know, so you really have created a really beautiful brand. for yourself. Yeah. And I'm, I think it's fantastic. And so well, and why don't you tell us a little bit about yourself as well. So just where you know, how you how you ramped up to this position with ALZAuthors.

Ann Campanella: 11:22

I would love to. I really found all's authors to be a place that was exactly where I wanted to be. Because after my mother had Alzheimer's, the saint for 14 years, and it was, when I was in my 30s, early 30s, it began and I was so isolated. And I really, and I was a writer, and I was isolated and caring for my mother. And the one thing I wanted to do was to reach out to others and find ways to just make more of a community for people who were experiencing this kind of loss, and just going through the craziness of what I experienced. And so all these authors just welcomed me, Marianne and Jean and Vicki, who were part of it at the time, and Katherine at the time, they were just so happy to have somebody else to help. And I just wanted to push the word that there were resources out there for people who needed them. And of course, I also wanted people to read my book, because I felt like it could help others who had who were isolated themselves, and were in a similar caregiving situation. So it has it's just been a wonderful community. And we've just become such close friends through this process, which is really another blessing.

Susie Singer Carter: 12:48

Yes, absolutely. And Sue, where did sue go? Troublemakers back, okay. She we had we had technical issues before. I'm teasing her lovingly, that's what I call my mom, troublemaker. But all the time when she was in her. My mom had Alzheimer's for 16 years. And she has a long road, I get it. I get it. Very long, very long. So Sue, it's great to meet you and have you here and I your your background in journalism, and you know, in newspapers, and that that's an interesting pivot into poetry. From you know, I mean, what kind of journalism do you how do you come to this obviously, with you have some experience with dementia or Alzheimer's? And so what's your trajectory here?

Sue Fagalde Lick: 13:41

I was a poet long before I went to work for newspapers, but a girl has to work make a living right.

Susie Singer Carter: 13:49

Art seldom pays.

Sue Fagalde Lick: 13:51

No kidding. Yeah, no, I worked for newspapers for quite a while and but I'm got an MFA in Creative Writing at age 51. And I'm back into poetry and fiction and creative nonfiction. My husband had Alzheimer's. He was a bit older than me. But he started in 2002, we started seeing symptoms, and I recognized it because my grandfather had dementia. And I did a lot of research and a lot of writing about it back when he was sick. And, you know, it was a whole heartbreaking thing. And then sure enough, my husband came down with it, and spent seven years at home caring for him before he went up the two years and in a series of different institutions. So I wrote, I was writing a lot of poetry at that time, I was also journaling a lot. And the poetry book got published first. But now the memoir is coming out next month, and I don't know we'll be sharing that. Oh, Story.

Susie Singer Carter: 15:01

Exciting. That's exciting. Congratulations. Thank you. Yeah, yeah. It's it's very, very inspiring that you got your, your degree at 51. And, you know, as you know, the documentary that we're doing, no coach throw people in so much of the of the issues are come from our inherent ageism. Right. And so you know, that people are just supposed to start winding down, even if they're healthy and feeling good, and, you know, motivated, but you know, and I love hearing those stories of new chapter, new chapters, new chapters, that's what it's about, you know, it's the curiosity of life, right?

Sue Fagalde Lick: 15:45

I'm still winding up. But you know, me too. I was getting my master's, my husband was getting more and more sick. I'm having more and more troubles with his dementia. And so, you know, I remember graduation ceremony, I looked at myself in the mirror and said, What am I going to do with this? They can see what's happening, and he's going down a whole other track? am I actually going to be able to use my degree, but wonderful,

Susie Singer Carter: 16:14

the irony of that of your, of you enhancing your capacity of intellect? And as he's losing part of it? Correct. Right. So there's the irony of that. So well, I love this. So so how, I have a question for all of you. So you, I think about because when I was making my movie, my mum and the girl about my mom, and it was with Valerie Harper, who plays my mom in it, and I remember being encouraged by people who what I would tell the story, the spirit, this lovely anecdote about these three desperate women, and I thought, This is so beautiful. And then people would say, You should do a film and I thought, Oh, just what the world needs is another film about Alzheimer's. Right? And I did, I really thought that that was really my, my thought was like, who's gonna want to watch this? And How do you look at that, you know, and say, because I'm curious, there's a lot of books about Alzheimer's, but they're all different. Because I've read a lot of all of yours. And, and I and I love them. And they all touch me in a different way. Right. So but I want to hear your all three of your perspectives. Sue?

Sue Fagalde Lick: 18:10

No. But um, when I was trying to market my memoir, which had a different title at that time, I called it Alzheimer's. Age agents and editors all said, yeah, there's nobody wants to do another, another disease memoir. Now, especially dementia, it's been done. But if you want to do a how to we're all for that. Butyou know, they basically said the market is closed, which every story is different. And there's different angles to be taken. So I kept going.

Susie Singer Carter: 18:42

Good for you. That's interesting that they said there's a how to is all I feel the opposite. I say this a lot. I've been noticing this a lot. There's so many caregiver advocates who are regurgitating the same how to? Yes. Right. And I think that, you know, how many influencers do we need? Who are saying the same things over and over? Yeah. Which is, I mean, listen, it's great. I didn't have that. When my mom started. I didn't even know I made every mistake in the book. So I didn't know what to do. And there wasn't a lot of there wasn't any podcast for sure. And you know, and I read, I think I read Greg, Greg. What was his name O'Brien did from Mars. Yo, bro. Yeah, no, yeah, he was. He was our guest. And I read that book. And that was like the one book that I knew to read at the time. And it was difficult because it was coming from his head, right. And it was like, it was scary for me because I knew what was coming.It was a bit it was daunting. But you know, I find it interesting that because like you just said to all the story all stories are different. But the How to is the same? Pretty much?

Ann Campanella: 20:02

Yes, I have to say, when I was caring for my mom, I was looking for books to read, because that is how I've gotten through life, I look for memoirs to teach me how to not just survive, but to thrive in different situations. And so, at that time, which was quite a few years ago, it was over 20 years ago, there just were very few memoirs, and I really wanted to know, how does somebody navigate all these small little things that come, you know, the changes that she can't drive, or she's putting on her clothes backwards? Or, you know, just saying weird things? You know, how do you navigate that, and I felt like I could learn and teach that in my own memoir. It was like, I can just show the experience, it's like, you can teach by showing rather than telling. And so I feel like memoirs are such a great way to learn.

Susie Singer Carter: 21:02

I agree. I'd say it the same with a narrative film. Yeah, right. Yes, I can. And I decided to do it. authentically, like, but also not depressingly, you know, to, to do it. I mean, Marianne seen the film. So shall I think you agree, Marian, that, you know, it's real. And I show some not so pleasant things, but not, not, you know, I'm not, I wasn't being gratuitous. But I wanted to be real. But then I wanted to show the love and then the humor. And, and, you know, the irony of it all. And that, you know, when you lean in, then you figure out how to work at each stage. And it and it's very, it's it's much more peaceful and rewarding. And for both sides, for a caregiver and careGivee as they were. So what do you think, Marianne?

Unknown: 21:57

Well, when I wrote my book, it was in the early 2000s. And I couldn't get anybody to pay attention to it. I sent it out to agents and editors, you know, far and wide, I have a big stack of rejection letters from people who never read the book didn't even ask for one page. And it was so discouraging. But I knew that it was really important. There weren't a lot of books about Alzheimer's, dementia, especially memoir, one fiction, at that time in early 2000s. And I did a lot of research, and I read what was available. So I couldn't understand why it was so taboo, you know, and so that's when I decided that I would self publish it, which, which I did. And I'm really glad that I did. And now there's more and more books, because it also authors we get people submitting, you know, to us every week, sometimes more than one person with a new book or something. And, you know, we recently are, we are going through a change in in our platform, and how we're going to be doing things in the future, because we just have a very small team, and nobody gets paid. And it just became more than we could handle. So one of the things that we decided to put the brakes on are those caregiver guides, and we're looking for more memoir based stories and fiction, and we're really looking for stories, stories about how someone went through a situation and how they survived it and thrived through it. And those are kind of sometimes hard to find. And there's always the different situations like a woman taking care of her, her mom, another woman taking care of her husband, a man taking care of his dad, somebody's taking care of their grandparents, you know, and then everybody brings a different type of socio economic

Marianne Sciucco: 23:48

flavor to their situation. So that's why it's always so different and where people live. That's another one. We look for authors who are outside of the United States, we have an author representing every continent, except for Antarctica. In our collection. Wow. Yeah. We have from everywhere in the globe. Yeah, at least one or two from you know, Australia, Europe. Asia, we have like from from Africa. So yeah, so and those are hard to find. And we can only work with the books that people have written. So that's another thing. And sometimes people say, Well, why don't we have a book from this or this type of situation? While we haven't found that yet, so somebody has to write it. Mm hmm.

Susie Singer Carter: 24:36

Yeah. It's interesting, because the culture when I was to when I was working closely with Alzheimer's, Los Angeles here when I was doing our film, and, you know, I trained as a volunteer just to really get my head around, you know, I wanted to be very, very involved in the community. And, you know, I really learned you don't think about it at first is that the cultural differences in families and how you approach things, you know, and how you approach this particular illness, which carries still the stigma and embarrassment. And I mean, I, I was, I had so much shame from my mom in the beginning, because I didn't know how people would perceive her. And I didn't know how to protect her. And I thought that, you know, at least I could protect her from feeling embarrassed, by by, you know, that kind of thing. And then I learned that people are actually more gracious than I gave them credit for. And people were very supportive when she was living with me and loved her and learn to navigate the disease and understood it, but, you know, and wanted to understand it. So I found that there was more of those kinds of people than the others. You know, how do you

Don Priess: 26:00

how do you Yeah, how do you walk that line of when you're writing a memoir, your own personal experience about the person you love, of being honest and forthright? And then also protecting their dignity? And certain personal things? Like where how do you draw that line? Is it just something by feel? Or do what's that journey?

Ann Campanella: 26:21

That is a great question, Don, I'll answer just from my perspective, I was very lucky because my mother was a journalist also. And I knew that she was very passionate about bringing to light things that our communities needed to know about. And so even as she was descending into Alzheimer's, I knew that, while she would be embarrassed in the moment, if she knew that this was going on, I knew she wouldn't be supportive in the long run. It's like where she is now. I know, she's looking down going, you know, you go girl, this is exactly what our world needs. So I'm very fortunate, but it is, it's a tough line. Because, you know, I always I wanted to be very real. And also like, Suze, you said, I wanted to show, you know, the joys and the griefs and the strangeness and the oddities. But I felt like being true to the actual experience was the best way to honor her.

Susie Singer Carter: 27:27

Yes. Yeah. Have you found books that are submitted that crossed that line? And that and

Marianne Sciucco: 27:34

Yeah, it may have been? Yeah, yeah, it's not, I don't think recently. But early on, there were many books, I mean, only accept maybe 60% of the books that come our way, for various reasons. But there were books that had come out that were not helpful at all that were, you know, not presenting the person and

Don Priess: 27:59

sensationalizing it, but not with no Yeah, values.

Marianne Sciucco: 28:03

They were like a hard No, because we we don't want to put on like rose colored glasses and be like Pollyanna ish about what this journey is like. Because for some people, it's truly brutal. You know, so So we, but we also don't want to, you know, we don't want to take advantage of somebody else's situation to try it's not like clickbait or something like that. We exactly want to stay away from that. Yeah. Sue did you find the same path or journey?

Don Priess: 28:37

Yeah,

Sue Fagalde Lick: 28:37

Yeah, um, I gotta say, it goes two different ways. I think with the poetry I was able to respect the line between personal and private, you can close so many things in a poem that you can't so much in a memoir, but I think I trampled all over it in the memoir and wrote things that I'm sure my husband would have been totally embarrassed about, you know, because toward the end, I mean, things that killed him were very private, very personal. But they were important to and dealt with important issues. So I did get read about them. You it's you know, it's the it's the ugly and the beautiful all together.

Don Priess: 29:19

Yeah. Your anything you regret. Yeah. Anything you regret or would say now I really wish I that wasn't there.

Sue Fagalde Lick: 29:27

No, there's things I regret about his care but there's no not about the book.

Marianne Sciucco: 29:35

It's a disservice to say not to share you know, the the union Yang the balance of it being all of the joys and then there's also the heartbreak and can't - it's not fair to the readers or to the caregivers, because some people would think that there would be something wrong with them, like, you know, oh, well, why am I not, you know, thrilled to have this happen to me and it? Can I can't handle it in what's wrong with me. It's my failure. And people are I feel that right feel like that anyway, you know, so they have to really see the ugly things that go on and how people can sometimes be, too. Yeah. Yeah, I was

Sue Fagalde Lick: 30:17

going, I was very honest in mind that, um, you know, I was in therapy and had some mental health difficulties during the journey, you know, definitely was struggling with that, too. Because it's, you know, you can't just be calm and generous all the time, sometimes it really makes you nuts. That needs to, needs to be shown the exhaustion,

Susie Singer Carter: 30:39

I think, Sue that I think, Sue that be I and I say this a lot, that being a caregiver to a spouse, or a partner, it's got a, you know, has its own set of of issues that a mother daughter doesn't have, or a mother or, you know, a parent child doesn't have you have that added, you know, level of relationship that, you know, is, I don't know, because I haven't been in it. But I know that that, that just watching heart, like watching objectively say like, with my stepdad and my mom, my stepfather being very much in denial about my mother's, you know, decline and getting frustrated with her and as opposed to feeling compassion, you know, and, and, and I would say to him, you know, Georgie mom has Alzheimer's, no, she stopped, she's fine. She's fine. You know, and, and so and I've heard that from a lot of our guests. And so, you know, I, I know that there's, it's, it's, I think it adds a whole nother set of, of, you know, emotional baggage and, and, you know, it's a heavy lift, I think, I'm not trying to compare, it's apples and oranges. But I do think there's a bit more complication, that as a spouse, you know, and everything, your intimacy, everything, you know, and I've had, we've had some beautiful interviews with the Most Gracious partners where, you know, their husband was like, I can't remember her name. Now, Don, the the opera singer whose husband had dementia, and he was calling. Like, no, what is it eight, the phone sex thing? Like, what is it called the phone number? I forgot what it's like, whatever. Don, you know, the 601. Numbers. Yeah,

Don Priess: 32:42

I know all about, that's my expertise.

Susie Singer Carter: 32:46

Anyway, she was so gracious because she knew that he, he loved her. He just was, it wasn't the same person. So she helped him with the cause. She helps you. I just, I'm not telling I'm bastardizing the story, but she's told it so well. And it was so touching because she loved him. And she knew that it was just, he was a different man. It was she said it was he had regressed to a different man. And he and she just wanted him to be happy. And I thought, Wow, what a what an amazing love story. You know, and, and, and similar stories like that from, you know, couples, and I find that very intriguing. You know, very, very much so. So, I, I understand that you, you know, having to go to therapy and having to deal with that. It's a lot. It's a lot, you know, because, yeah, it's just a lot. So,

Don Priess: 33:48

Memoirs to poetry, there's a difference, isn't there? A big I assume there's a big difference. Is there a preference? What are the differences? And how do you you know, what, what's what's and what how do you start to write poetry about it? You know, it's, it's, I mean, poetry can be all things. It's not always flowers and happy, obviously. But is do you have a preference and what are the

Unknown: 34:10

Have you heard of Sylis Plath. Not a happy woman.

Susie Singer Carter: 34:19

anyone.

Don Priess: 34:21

That's open to anyone.That's open for for all three. So whoever wants to dive in?

Sue Fagalde Lick: 34:24

Let me start with that. Um, I guess which one I do depends on my mood. Sometimes I just barf out what happened in streams of prose. And, you know, later we'll see what we're going to make of it. But poetry I can you can take just a nugget of a scene something you see something, you hear that? It's like, oh, and you build on it, you know, the tree outside my husband's window at the nursing home and as it changed through the seasons. And he thought we could go out there and play and yeah, just little moments that you He's got, oh, I could do something with that and build a poem around it. Were you with a man with a memoir, you got to build a whole story. It's a moment you're capturing, capturing a moment.

Unknown: 35:16

Yeah, well, I'll add to that Sue, because like Sue, I was a poet before I was a memoirist. In fact, I wrote poetry even as early as first grade. So I was processing the world through poetry. It was just, it was a way for me to take in mostly difficult moments, most of my poetry, people would say, Oh, you're the grief poet. But they're not necessarily all sad. There's, you know, there's a mix of emotions in the poems, but it was a way and it has been a way for me to really process the most, the deepest, most painful experiences, you know, which happens with Alzheimer's or dementia. When you're seeing somebody change, or you know, you just don't expect the transformations that are happening. And it's a way to process. And as Sue said, You take these moments, and I found my poetry books actually, were kind of like, these little islands of serenity in the midst of this raging storm. And so those little islands, were just a wonderful way to remember both something good and something hard. So

Susie Singer Carter: 36:38

Oh, it's a beautiful way to frame it. That's beautiful. I like that. Yeah. Very pretty. You said you were going to do some readings. I would love to have some readings, if you would, if you would be. Are you ready to do that? Yeah. Are you? Yeah, I,

Unknown: 36:58

I don't have any poetry in this book, because I didn't write poetry but I do want to didn't want to read some by some of the other authors.

Susie Singer Carter: 37:06

Okay, and then then anuncio read as well, right? Sure. I'm excited. This is gonna be great.

Unknown: 37:14

Did you want me to go first? Yes,

Susie Singer Carter: 37:16

please. Okay. I'm going to read this. Tell us who Who are you reading? Yeah.

Unknown: 37:22

This poem was written by Mary crescendo, one of our authors who originally wrote a play called Planet A, and then that became a book. She's done extensive work in the Alzheimer's community. And she wrote her poems. The two of the poems in the book were written about people that she met with Alzheimer's dementia in her work. So it was It wasn't wasn't apparent or anything. This one is called Dorothy. My first date brought me a gardenia. We went to a party together. I spent my days as a child in Virginia among blossoms and the precession of farmhands, cotillion balls and grand marches. And those required hats and gloves spotless, like the color of cotton in the field. Today, my daughter carries out cardboard boxes filled with my clothes, my bubbles, the color of Mardi Gras in the final bill. If she could have managed, she would have kept me with her in her home. But it was impossible for both of us. Sometimes it simply is, no matter how much someone loves you, it's better this way for both of us. No more bills, no more useless guilt, no more suffering on both sides. This day was as inevitable as the tinge of a white flower when it is around for too long. So but these are the types of you know, poetry poems that you would find that you will find in this book of people writing, you know about the different hardships and heartbreaking experiences, as well as some of the you know, happier times. And you'll build some of them. You'll laugh.

Susie Singer Carter: 39:14

Yeah. And did you have one that you can share?

Unknown: 39:19

Sure, yes. This one is from my collection called what flies away, which tells the story of my mother's descent into Alzheimer's. At the same time, I was trying to become pregnant and eventually did have kind of a miracle birth of a child at the age of 40. This is called Child mother. She used to grip the rudder, auburn hair slicked cheeks round and pink is to rubber balls. Duck CDL in the sale swept across this canvas wagging for a moment like the skin on her jaw. Now she's still Here's a photo of the bay, her eyes pools of Hazel. She grips my hand whispers, I think I'll walk down to the lake. Her voice soft as an eddy of wind against my neck. We push through the glass doors into a grey sea of cement. Cars and bands Bob like anchored boats. Her eyes calm as missed. She points. What do you see? I ask. squinting at a lamppost. A small tree in the distance. She waves. Why It's dad, of course. But he doesn't see me. wetness slides down the ripple of her cheek. Will you take me to him? I placed my arm across the mast of her shoulders. Walk with her into the Mirage.

Susie Singer Carter: 40:53

Gosh, yeah. Yeah, you did? Yeah, you did. Yeah.

Unknown: 41:01

Lake lover and love sailing? And it just. Yeah, bring it makes me think about it. Yeah,

Susie Singer Carter: 41:10

it's put it like both of these, that you just read Marianne and Ann. Like it is very emotive. Right. I think that in a poetry frame, in poetry, it's, it's quite. It's very impactful in terms of, you know, in such a short in it in Haiku as it were, right. It's like very, very quick. And, and yet it gets right to the heart. Especially binder, and both of those experiences are completely different. Right. And yeah, the Mirage is beautiful. And then, you know, the flower of the tinge of the flower, and, and the inevitability of all that which, you know, I, anybody who's been a caregiver knows that. That moment where you're packing up the life of your loved one, right, and you're packing it up. Yeah. And you're downsizing it and it's like, it's brutal, so brutal. It's really hard. Yeah, powerful.

Unknown: 42:22

I guess our hope is that these points will touch the people who are living the situation now or have experienced it, and they can just flip through and find a poem that relates to their experience and just have a little bit of a release of emotion or a little joy or cry a little bit or whatever it is that they need, but hopefully they won't feel so alone.

Don Priess: 42:47

Yeah, and it also humanizes the caregiving experience because you know, you think you know you don't when you see somebody caring for somebody else, these are not the thoughts and moments you just think of what the physical thing is happening right at that moment. Where all this other stuff is, is swimming up here.

Unknown: 43:07

So it's it's there

Don Priess: 43:09

it's beautiful. So

Unknown: 43:12

yeah, I'm going to share one that's also in my my book gravel road ahead. But it's in the new book to sister Alzheimer's wife. And I'm you know, I'm addressing other women who are going through what what I've gone through. Sister Alzheimer's wife, I know you, even though we have never met. I know the fear every time he forgets something he used to know. Like how to make a sandwich or where the salad dressing goes. I know you lie awake at night watching him hallucinate biting monsters in the bed or not remembering who you are. It gets lost and pees on the rug. You're so tired. You want to run away. I know you weep where he cannot hear in the car the garage on the toilet seat, and hurry to answer his calls for help. Turn on the TV or button his shirt. Well the house needs work. Lawns aren't mowed and the oil lights been on in the car for weeks. I know you watch the money go as you pay bills you never paid before. Doctors car repair and soon the nursing home. married but not a wife anymore. You miss kissing and sex and wine soap talks. sharing memories only you remember now. Oh, sister, I know you feel alone, that no one understands the way it is that he's disappearing bit by bit. Even if he looks the same as he always did. And it's not fair. Not fair. Not effing fair. But you promised so you stay. Oh, sister, Alzheimer's wife. I know. I rode that ride from beginning to end plastered in place by centrifugal force to stop than a wobbled off alone. Dizzy and sick to my stomach. Yes. But as staggered on, and so will you. Oh

Susie Singer Carter: 44:58

god, that's good. That's good. That's really a thing.

Don Priess: 45:04

I mean, three completely different angles on the same in the same world that, you know. And they're literally like, what they're, they're, like literally looking at a painting they're looking at to me, they they're like paintings to me. As opposed to movies, you know, it's, it literally is that it just evokes that in your mind even if you don't know who you know. I mean, when you said you know, sharing memories that only you You still remember

Susie Singer Carter: 45:30

exactly how you answered every question that I was talking about before about right? You just said that you'd set it in that poem about missing the sex and the and the wine soaked conversations and all that stuff. And that you, you know, there you were. And then, and of course, what do I relate to? I relate to the wobbling away at the end, you know, it is just that feeling of like, what am I just been through? You know, and how am I still standing like, all of this makes me very emotional because it, it's, it resonates so much it touches deep and hits really deeply. Yeah,

Unknown: 46:17

I really believe that if you allow yourself to go deep into those difficult emotions, it will allow you to feel more joy, also, because the time is 100 When I was yes, the times when I was numb, and I couldn't feel anything. But when I let myself really feel the pain. Then the next moment, I would be amazed by the special moment that just happened. Right?

Don Priess: 46:44

Yeah, it's because you protect yourself. Yeah, often, you're just protecting yourself. You'd like I'm just gonna shut it off. And like you said, you can't feel anything and that's not a good place to be. Right?

Susie Singer Carter: 46:56

It's not i i again, back to Sue's poem like you know, I one of the things when when you were talking Annabeth is like person like like those moments that if you just those really hard moments like I always remember going to see my mom and being the cheerleader going in and doing the dog and pony show for her right. Hi, Mommy, your favorite daughter's here, Dan, Dan Dan to dance. Right. And then I would I'd hugger. And then I would cry over her shoulder. But she didn't know it. And then I wait till it went away. And then I pushed that because I didn't want her to see me cry. Because I know that would hurt her feel it would hurt her because she wouldn't want to see me cry. Yeah. So I didn't let her see me cry. Even when she was dying. I didn't cry in front of her. Because I didn't want her to feel scared or sad for me. Right? Because I know how she I know that inside her there was mom. Yeah. And that would hurt. So I was very careful with that. But when you said that you would go in your car and cry. Boy, did I do that? Oh, yeah.

Unknown: 48:00

Yeah. And yeah, when, when you're together, you're sorting through the things that I can't talk about that I can't talk about that that will upset him or he won't understand. So you say okay, what am I will focus on but my brain can talk about him mostly. Right.

Susie Singer Carter: 48:15

Right. Good thing, I have my tissue box close by folks. So what's

Don Priess: 48:23

Yeah, what makes a poem and I don't want to get into a whole class here. But you know, a lot of people think oh, well, it right. You know, this line rhymes with that rot line. And there's a pattern and then there's but there's not, you know, all of these were completely different. Yeah. You know, why is it a poem as opposed to just a little short story? We you know, what, is there a delineation between the two, for us? People who have no clue.

Susie Singer Carter: 48:51

We're uncultured writers that we are right here. I second that emotion.

Unknown: 48:58

They don't have to rhyme these days, for sure. Part of it is imagery. using metaphors and similes and picking up something a color of sound. Something that will resonate with readers. Some of it is rhythm. You know, there's mostly they don't rhyme these days, they can. But you don't want to be thinking so long. You want it to flow. So it's it's the use of language. It's more intense language, so many different types of poems. Yeah, yes, there's, there are prose poems that are like a paragraph, but they're very condensed ly written and, again, as you said, so they either focus on an image or a way of language or the rhythm or and again, there's just, you can approach a poem from a million different directions. But yeah, what's different? I mean, I would say usually, it's a contained moment. or a time that you're sort of,

Susie Singer Carter: 50:05

you know, snapshot, just like a snapshot? Yeah, yes.

Unknown: 50:10

Yeah, I'm not trying to tell the entire story. The whole story might come out in that little actually.

Don Priess: 50:17

Yours was was a years it was a longer period of time as opposed to this moment. Yet it was a snapshot.

Susie Singer Carter: 50:24

My two people would say why this needs to be a real movie, we want to know what happens. And I say, but we don't know what happens. This is it. This is the snapshot, this is this is what happened. This is what happened. That's what I want to tell this is, this, this is as powerful. This is powerful as it is. So that's what I wanted to do. I love that you're bringing poetry into the zeitgeist again, because I know when I was growing up, like poetry was very popular, you know, and people, all my, my peers, we got poetry books, and we read poetry, and we, you know, but I don't find a lot of people talking about poetry, it at least, you know, within the three generations that I know, which are my daughters are each area into one Gen Z Mellon millennial, and Gen X, right. So we have the three of us, and then I don't, you don't hear a lot about poetry. So I find I think it's really interesting and lovely that you are bringing it back and that it is a powerful art. And, and I like that, like how do you how are? How is the appetite that you find out there? Like Marian, what do you is there an appetite for poetry? Or do you? I'm just wondering, because it is such a powerful?

Unknown: 51:44

I mean, from my limited limited experience, yes. Because the response to our doing the poetry reading last year, which is where this book was, was born. I had, it's kind of a funny story. I'll be honest about it. So what happened was, we wanted to do this virtual poetry reading for National Poetry Month. And we were going to invite the authors in our collaborative, who were poets that we knew of that had published books of poetry that were in our collection. So there were 13 of them. So I made up a mailing list for those 13 people. And I wrote up this invitation, and I sent the invitation out. And the next thing I know, the very first response I get, it was actually it was from the author. I just read Mary credenza. Oh, I'm so excited. Thank you for inviting me to be in the poetry reading. And I'm thinking to myself, Mary progenza, why is she in the poetry reading? She did it right? Write a book of poetry. And so I looked at my email, I sent it out to everybody on our list. Oh, my God, it wasn't 13 People now. So I was like, hopefully now what am I going to do all these? How many people are going to spring forward? So there were like, 3040 people that wanted to come to the poetry reading and more than that, it was crazy. Yeah, there were like over 100, who signed up? Yeah, 60 showed up. It was it was crazy. We had a live one for two hours. Yeah, we did two hours. Wow. We because we let people read. And then when I had to make it into a podcast, so it's in two episodes, because it was too long, like my system wouldn't write couldn't manage it. So I had to break it in half. We have it on YouTube. It's one it's in its entirety. So people could watch it on YouTube. But yeah, and so now, we put out the call for the poets to submit the poems to the books, and we have a well over 100 poems in this book. And we get we allowed them to submit up to three poems, and we took them all. And they come from a very, very wide variety of experiences, where some of the poets are very prominent, well known, award winning, have done many books, written many, many poems. And then there were other ones who, you know, was just somebody that took care of their mother, and they wrote one poem, and they won't write another poem, but that was what they did. So it just runs the gamut of all of that, which I think is really, really cool.

Don Priess: 54:13

Let's see, seems like it would lend itself to to what's going on to that, you know, you know, everything about short and fast and quick and condensed. And it seems, you know, even for social media, it seems like it's a natural, right, or, you know, that this to to come back and say yeah, this is something that is, you know, that that could become really something that you could, you could put it out there in so many different ways. You know, not just in a book or not just you know, as one long video, but just, you know, in bytes.

Susie Singer Carter: 54:43

Yeah, agreed. Yeah.

Unknown: 54:45

And a lot of poets are publishing poetry on social media. Among the younger folks, slam poetry has become very popular server performance poetry that's it's almost like rap. You know, and yeah, that is one word, the word to perform it not just putting a book right for me it is becoming very popular. So yeah, it's another aspect of it,

Susie Singer Carter: 55:12

that's a spoken word is definitely has not lost, it's been around. And I remember because we were developing a series on spoken word, like in the early 2000s, you know, and there and it's, it's quite, I mean, it's an art, it is an art, there are some, like, you know, a good spoken word artist as opposed to not a good spoke. I mean, they are power, they're powerful. I mean, they aren't, can move you, they can move the hell out of you. They are incredible artists, you know, in fact, we have a woman who's doing it doing the credit this or giving us the rights to do this song of use her song in our movie for No Country for Old people for the credits, which is basically spoken word on a blues track. I mean, she's incredible. She's sees one of a kind artist, you know, and we're just thrilled with it, because it is powerful. When you've got that kind of communication, it says a lot. And there's metaphor all over the place.

Don Priess: 56:15

But also hearing it from from the writer themselves. Because even if you're not a performer, it's just inherently there that you have the emotion that you know, something that you can't tell somebody else how to do that. It's just there. It's visceral. And it's coming from, you know, not only from your hands, but from your heart. And but you can hear it. I mean, when you were reading it, you could feel it. You could, you know, so yeah, it just feels like it lends itself to what's going on today. Yeah,

Susie Singer Carter: 56:42

we love it. So, so when are we so it's coming? Let's see, when are we doing it? When there's your tell us when the when the your pot, your poetry readings are going to be happen? I know it's happening in June. Yes,

Unknown: 56:58

June 3. So it's coming up next week. Okay, um, so June first, and it'll be back paperback and digital on Amazon and eventually, on the other, you know, book publishing platforms. But can I read another poem? I had one poem, I was gonna

Susie Singer Carter: 57:18

ask you to read one more. Oh, you read. But I just before but I just want to say before you I want to just say you're going to hear this podcast, it's going to already have been published, you're gonna go to Amazon, you're gonna get yo happy able to get everything that you want. Are you doing the audio version? By any chance? No. That's Oh, please do great idea. I don't know who's gonna say so myself. Well, we don't actors. Okay. When we,

Unknown: 57:49

some someone else can take the lead on that project. And sue you.

Don Priess: 57:54

So your book is also coming out next month? It's now June 25 25th. No

Unknown: 57:59

way out of this. Yeah. Seuss book is a great book.

Susie Singer Carter: 58:06

Awesome. And what else do you want? Is there anything we can we can promote for you? And then we're going to have you guys, because I know I'm going to be crying already again. So I want to get all the good work out. Now. Another