Meet the Founders of AlzAuthors: The POWER of Caregiver Collaboration

Meet the Founders of AlzAuthors! In episode 73, my co-host, Don Priess, and I had the unique pleasure of speaking with the three co-founders of AlzAuthors.com. In 2016, our guests, Marianne Sciucco, Jean Lee, and Vicki Tapia, founded the non-profit AlzAuthors.com, a global community of over 300 writers who are writing all about dementia from their personal experience. This ever-growing global community is united in an effort to light the way for others, with a vision of lifting the silence and stigma surrounding Alzheimer’s and other dementias through the sharing of personal stories.  

If you're writing your own story or are thinking about it, this is a must see/hear episode! Regardless, you will be enriched by this dynamic trio who are truly Caregiver Crusaders!

You can find out more about AlzAuthors on their Website  and their podcast, Untangling Alzheimer's and Dementia.

#writers #writer #podcast #experience #love #art #medical #nurse #community

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 all is 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 priests.

Susie Singer Carter: 0:39

Hello, everybody. This is Susie singer Carter.

Don Priess: 0:42

And this is Don priests. And this is love conquers all calls. Hello, Susan.

Susie Singer Carter: 0:48

Donald. How do you how do you do today? How are you?

Don Priess: 0:52

How'd you do?

Susie Singer Carter: 0:53

How'd you sir?

Don Priess: 0:56

Milady I'm fine. I'm good. Yeah, no, that was great. No good, good hanging in. You know, we're just you know, finished one documentary rolling into another.

Susie Singer Carter: 1:11

Yeah. John just finished a documentary. What's the name of it?

Don Priess: 1:15

The name is Jack L Warner, the last mogul and it's about Jack Warner of Warner Brothers. So a lot of people don't even know that there were actual brothers. But there were and this is a story of a very flawed, very amazing human being who kind of helped was one of the pioneers of the film industry. It's It's on all the platforms now iTunes and Apple TV and it'll be run on from time to time on Turner Classic Movies. TCM. TMC TF Turner movie cloud Turner Classic. It's one of those.

Susie Singer Carter: 1:51

I screwed it up. Yeah, I screwed it up. And,

Don Priess: 1:55

and so yeah, so I just am finishing that up, or I have finished that up. And now we're rolling right into what are we rolling into Susan,

Susie Singer Carter: 2:04

No Country for Old people, which is our documentary on the systemic nursing home crisis that we are trying to illuminate and get get a collective conscience movement to get some change going because it's been going on too long. And this weekend, we had a fantastic shoot, we shot our interviews, we shot three wonderful interviews, Michael Wasserman who's a geriatrician and also a massive advocate. And you he's been, he's been interviewed on CNN and MSNBC, and he really is a very outspoken and then we have we got to do our partner, Rick mountcastle, who is a former attorney general who spent 25 years investigating and prosecuting nursing homes for fraud and abuse. And then we had a hospice doctor who was just phenomenal who really, really gave us an inside look at the ins and outs the politics and and, and really what hospice should look like. And it was it's fantastic. I mean, just FYI, this isn't going to be all gloom and doom, we're, we want to find a solution. We want to keep everything, you know, in a in a hopeful way that we're not trying to create knee lists out there. So but we and speaking of keeping it in a good way, that's not even a good segue. Speaking. No, that's a terrible segue.

Don Priess: 3:39

Terrible. It's one of the worst segues why this morning.

Susie Singer Carter: 3:43

God dammit, I think I can come up with a great, I think that I could be I can say that I come up with the worst segues which makes me the best that the worst

Don Priess: 3:54

the best. Oh, there's nobody better or worse ways.

Susie Singer Carter: 3:58

Yeah. And I love that. I'm proud of it hops. And Donald's today, yes, for a terrible segue for in keeping with my terrible segues, we have three wonderful guests. That is this. This is a long overdue interview, because we know them very well. We know this organization very well. And yet, we only know one of the founders and it was a it's going to be a pleasure to meet the other two. And so tell us about today's guests.

Don Priess: 4:32

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 not only became his medical, legal and financial read presented, but also for her mother who was suffering from heart failure. She's become a prolific writer and also launched her own podcast, untangling Alzheimer's and dementia and all authors podcast. Our second guest, Jeanne Lee's parents were diagnosed with Alzheimer's on the same day. Her writing Spencer first suspicions to a decade later holding her parents hands as they passed. She believes she was writing a family story, but her draft morphed into her memoir Alzheimer's daughter. Lee believes sharing vulnerability supports others and helps them heal Leah's memoirs provides a hand to hold for others going through a journey of Alzheimer's or dementia with a loved one by letting them know that they are not alone. And our third guest is Vicki Tapia. After teaching approximately 10,000 mother baby pairs the art of breastfeeding, Vicki found her energies redirected to the other end of life after both parents were diagnosed with dementia. A diary written to help her cope with caregiving morphed into somebody stole my iron, a family memoir of dementia. Vicki has contributed to various dementia caregiver blogs as well as the Huff Post, been interviewed for podcasts and had numerous speaking engagements highlighting dementia awareness. Together in 2016, our guests founded the nonprofit all authors.com, a global community of over 350 writers who are writing all about dementia from their own personal experience. This ever growing global community is united in an effort to light the way for others with a vision of lifting the silence and stigma surrounding Alzheimer's and other dementias through the sharing of personal stories. And with that, let us welcome the fantabulous Marianne Schuco, Vicki Tapia and Jean Lee, hello, how are you?

Susie Singer Carter: 6:49

Yay, hello. We did it, we got the three pillars here. So exciting. This is so exciting. Also authors, you guys have created such an amazing organization, and giving great platform and presentation to this kind of, of literature that so needed. And you know, in reading all of your reviews on all of your books, and and how much you've helped people, and how much you've touched people and how many people you resonated with and, and made cry and made laugh and and made feel better is such a it's such an honor. It really is it and and I just applaud you for for all of the your work. And I enjoyed reading all of your books and and, and I have so much to say about them. But when I was trying desperately to be a good caregiver, I didn't know anybody else in my circle that had anybody with Alzheimer's, so I was winging it with a capital wing, you know, and I didn't know where to turn. And the places that I did turn to were kind of useless. You know, a lot of just a lot of talk or, you know, it was like a wild goose chase. But each one of your books really personalizes it by putting it in such a in a narrative way, as opposed to a scholastic educational, you know, he how to book because when you pray place, these different anecdotes, you know, in a personal situation, it really it really touches it's like store, it's storytelling is so powerful, right? So, I mean, I want to I want to start let me just start with Jean and just say I, I so loved your book, I so loved it, I there was so much in Alzheimer's daughter that was that I could have got a HA HA HA and even though my mom was completely different than your parents, right. And, but but that just just the dialogue and the the joy and the bittersweet. Do events that occurred just hit home. And I know that if anybody reads your book, it will hit home so much. And it will make it a lot easier and and it makes it more such an more elegant journey. So tell me how you what made you what the heck motivated you to sit down and rehash this whole story, but I you know, and you know, I think I know which characters you But let you tell me, You tell us.

Unknown: 10:03

So I'm rosy in the book. And gosh, both of my parents were diagnosed with Alzheimer's on the same day, I was working full time as a third grade teacher. As they were declining, my only sibling lived 1000 miles away. I live in Ohio. She lives in Florida. And really, the book is a result of my sister asking me to please keep a journal. Oftentimes, those relationships were siblings that are distant in proximity, are filled with a lot of disagreement and strife. And that was not the case. For me, my sister was my greatest support. And when I would call her and say these odd things are happening, she said, Jean, would you just start a journal so that when we talk, which was nearly daily, you can open that up, and we can kind of see a progression, and frequency and timelines and who knows this might even be helpful in a diagnosis at some point. So I did that for her. And it was chicken scratched weights and blood pressures and things that I found out at the doctor's office for their medical appointments. But one week after my mother died, I was sitting with my dad. And he let me back up to say, I read my way through this journey with them, I could not have survived without the stories of others who were brave enough to tell their personal story, even though they weren't exactly like mine. They made me get up each morning, put my feet on the floor, go to work, be a caregiver, they made me know if that person survived. So can I people like Marianne Schuco and Vicki Tapia. Then back to sitting with my dad a week after my mother died? They had been married for 60 years. And he said to me, whereas that woman I admired. He couldn't remember her name. 60 years, one week after she passed. And it made me think, Wow, maybe my story could be helpful to somebody else, who's going through this same kind of a journey, a dual diagnosis and a simultaneous decline. So I joined a local writing group to help me write my own story well, which was intended to be just for my family. And my writing group helped me flesh out the manuscript and they said, this has a bigger scope than your family. And they encouraged me to publish it. And I did so with great guilt, for telling personal stories about my wonderful parents. And after I published it, I felt so guilty and inadequate that I needed somebody to tell me you've done the right thing. And I reached out to Maryanne Schuko, whose book had guided me, I did not know Marianne, I did not know Vicki except having read their books. And I sent Marianne my book, thinking she'd throw it in the trash. She doesn't have time for this. And she read it and reached back to me and said, it's it's lovely. It's worthy. Will you work with me to elevate these other titles written from personal experience? Do you know anyone else who's Who else have you read? And I said, Well, somebody stole my iron by Vicki Tapia.

Susie Singer Carter: 13:44

Yeah, and that's,

Unknown: 13:46

that's years ago.

Susie Singer Carter: 13:49

Amazing. When you say guilt, and you feel guilty about you know, exposing these sort of the private things that happen within a family and you want to protect them, and I know, I also experienced that a lot. And in doing the documentary, I think, what would my mom be okay, with? Would you be okay with anything of this? And I have to you know, and it's really difficult for me because it's the last thing I want to do is be an, you know, exploit this situation, and yet if we don't expose, then nobody knows. Right? And and so I do I grapple with that as well.

Unknown: 14:36

And you know, Susie, it wasn't just the guilt of writing the book, it was the guilt of the entire caregiving experience, because I felt like little almost like I was whittling away at their personhood, and every shaving was a piece of them that I was taking away from them. I felt like I was taking every Staying away from the people who gave me everything throughout the whole journey. And then publishing the book was just like, oh my gosh, what have I done?

Susie Singer Carter: 15:09

is interesting because it feels to me from, you know, outside looking in, you gave so much to them, you allowed them to have such a beautiful journey, the best way they could have in the, in the circumstances. And it has such a, you know, a notebook. It feels like, you know, Riyadh, it has a beautiful, lovely tone to it. And if I, God forbid, had to be in that situation, that would be the situation I would want to be in. Right? And not Yeah, which is a great segue to Mary Ann's book, too, because blue hydrangea also gives me that feel, because it's such a beautiful book. And it's in a has that, that, that that component of dignity in it. And and that, you know, holding on to what's left, and not wanting to give up and, and you know, listen, I told my mom, I would I'd never put her in a home, right ever. And in your book, this is a similar situation. And yet you come to the point, right? And it also resonated with me because my mother at one point, you know, said Susie, we were visiting a family member who was you know, very progressive, my mom said, not me. Ah, right. And then you turn to 20 years later, and you say, she's full blown Alzheimer's, and you say, Mommy, how are how are you? And she'd say, I'm great. Life is good. The alternative sucks. So you which which mommy do you listen to? Right? Which one do you respect? And which one and I had to choose this one? Because this is who she is now. And you know, but your story has a different twist. But but but because you it's a story of a friend. Right? So tell us a little bit about because we you've been on the show before. And you told us about it. But remind people that haven't heard it because it's really gorgeous. Blue hydrangeas.

Unknown: 17:20

Thanks so much. It's a novel. So it's based on people I met through my work as a registered nurse. I was a case manager at a hospital in a I worked in a rehab unit. At the time when I met these people, and they just really intrigued me. She had Alzheimer's. He did not but he was medically frail. And they were quite advanced yours. And she had fallen and needed to go into like further rehab. She had broken her pelvis. And then she was gonna go to a nursing home for rehab. And that's when I came in. And I met them. And I met their son and their son's whole thing was he wanted to coordinate the transfer himself and bring his mother to the facility himself. I guess he maybe had feelings that maybe his dad wouldn't go through with it. So I said, that's fine, you can do that. But later on that evening at home, I just kept thinking about them and wondering what would happen if somehow they just left and they didn't leave with their son and he was didn't arrive in time? And where would they go? What would they do? And so that became the whole premise of that story. And it was based on that couple and several other couples that I had met where the husband was the caretaker because it's usually the woman that's the caregiver, right? Caring for her mom, her husband, her children. And I knew that men are caregivers, but they also often aren't projected that way. So I wanted to tell their side of the story. And that's why I chose to make it Jack Be the hero of the story.

Susie Singer Carter: 18:58

Yeah, also a little bit like away from her the movie, if you haven't, if you've ever seen that it's beautiful, too. And it has a male caregiver who is grappling with how to how to to adjust to this new, this new wife, that's not the same wife. And it's, it's it's very poignant. And and, you know, and I in your story, they he he makes a pivot. I won't give it away, but I think you know, yeah, it's, it's, it's, it's from the heart and it really, it resonates. You know, it's very, it's very, it's beautiful. I really love it. And I know, your background started as you are. You're a nurse. So you saw a lot of this right? Yeah. Oh, yeah. And well, yeah. And and then it didn't happen in your family later, right?

Unknown: 19:50

Yes. Yes. My stepfather was diagnosed like shortly after my book was published. So in my mom, she was medical the one that was medically frail. So she was really not helpful for the for his journey because she had her own issues and she didn't hear well. And she just really couldn't comprehend. Not that she had cognitive impairment or anything, but she was pretty much deaf. And she just couldn't follow along in these very intricate, complicated discussions, you know, around dementia care for her husband, so I coordinated all of that. And that was a real eye opening experience. You know, it's one thing to coordinate it for other people. But when you have to do it for people, you know, that you're close to and that you care about, then it's completely different is that emotional factor is huge.

Susie Singer Carter: 20:39

It's a whole nother story. It's a whole other story on another story, and it's not for the faint at heart. Isn't it's not?

Unknown: 20:47

It's hard. Yeah, it's hard. You know, that's what Kim best says she's one of our authors. And she says, this is hard. That's it's hard. There's no easy way to get around it.

Susie Singer Carter: 20:59

There is no easy way I talk about that all the time. I say we made I made that the best I could. But the best sucks. You know, it is not good. It's not you know, it is not good. But we thought we find a way to make it do to to get the best out of it. That like Vicki you you also like Jean had two people that your caregiving for at the same time I'll be at different diseases but not but still there was cognitive impairment from both Parkinson's and Alzheimer's. Right. Right. And I would I let me just say that. Well, first of all, the title of your book is so great. Somebody stole my iron. Cause sorry, yeah, no, listen, my mom. Somebody was stealing something at all times with my mom. You know? Okay. Did you steal? Did you steal my ring? Did you steal? Everybody stole something? It's in my movie? Yeah. Did you take you know, that was it was constant.

Don Priess: 22:07

Iron. It was.

Susie Singer Carter: 22:09

It was? No, it was everything else but. And truth be told she was stealing everybody else's things. She was living with me. It was like she'd have my daughter's earrings on and my and she got my daughter would go nanny. Can I have my earrings back? What are you talking about? She's crazy. These are my earrings. I remember buying them. Thank you. It was like, we learned to go Yeah. And they look good on you by. So you know, I had to totally understand that. But I loved your book, too. Because the very I love the do's and don'ts. Which I think if you've been through this journey, you'll go Uh huh. And if you haven't when you get that to those points, and you'll think back to it and go, right, right. I'm gonna do that. Because it's very, very onpoint. But so tell tell me because I haven't talked to you. We even talked to you before what how you are motivated to write this kind of book that resonates with people as you know, everything you wanted to know about this journey, and we're afraid to ask

Don Priess: 23:20

and tell the iron story please. Yes.

Unknown: 23:28

I'll start with the iron story. One day, I got a phone call from my mom and she's Vicki thinking you need to come out here. Somebody stole my iron Yeah, I think they broke into my apartment and they took my art well she had it started in the bottom drawer of her dresser. So I said okay, Mom, I'll I'll check into it and I went on out to the care facility and sure enough, her Island was gone. And we went and we talked to the people in the laundry room we talked to the administrator and we put out an All Points Bulletin for the island it was gone without a trace. So my supposition is Mom took it down to the laundry room to iron something and left it with someone else. Oh an iron or somebody you know just Yeah, picked it up and took it and forgot they have it. Right. So the case of the missing iron was never solved.

Don Priess: 24:31

It says a lot though. It does. It does. It says so much. In that one sentence. It tells you so much.

Unknown: 24:38

Well, yeah. And my book like jeans started as a journal. I actually was to keep my own sanity I had like UCITS is the nobody around me was going through what I was going through. And so I could only talk to my friends my kids, my husband so much about it and they're like okay and that already, so I took to the computer because it never talked to I just kept a written record of everything that happened and transpired about a year or so into it all I thought, hmm, you know, I should probably put this into some kind of journal for my family so they can have it as a memento. So I kept all my notes and I kept writing things kept. I kept remembering things, the story, that story, so I kept finessing it and, and then I got done. And finally, after a couple of years, three, four years, I don't know, I went to Kinko's and had it I printed it out and spiral bound gave one teacher, my kids, and I was done. However, I've lent it out to a couple friends, and they're like, why aren't you publishing this? And I'm like, I don't know. And then a friend said, you know, I loved your book, but what how does it apply to me? You know, if my mom had Alzheimer's, what can you tell me how to do this or what I shouldn't do. So that was the impetus for my do's and don'ts at the end of the chapters. Thank you, my friend. And I added those, then I started thinking about guilt, guilt, guilt, guilt, if I do this, my brother will never speak to me again. So I put it away in a drawer three years went by, and it kind of took root and started to sprout, because friends would say, I, I heard you wrote a book, can you show the manuscript? And after probably the fourth or fifth person said, Why aren't you publishing them? I reevaluated and thought, Okay, fine. My brother doesn't even talk to me now. So, yeah, it became a book and a little bit like Jean, I just had that guilt, like, Oh, I'm putting out private stuff about my family. Oh, so the greater part is that I could find very little to read back in the early 2000s. About anything to do with this, like, nobody, there was manuals and Doctor books, and like how tos, but I want to, I want to hear from a person that had gone through it and what they've learned and what they did to, to get through it, how did they survive? And there was very little written. So I decided I would fill that niche

Susie Singer Carter: 27:17

by Oh, it's a gift. It's a gift. What you guys, all three of you have done? Because that's what we're looking for is like, Oh, they went through that. And how did they get through that? And did they feel? Good? Were they pissed off? Or were they good? Yeah. And did they? And did they get mad? I mean, there was one point when when my mom was living with me, and I literally, she's so tiny, she's five foot tall, right? And I was like, I'm going to lift you up and put you in your room right now. Because she was being so she was being so yeah, I called her and I was like, I thought and been for a second I stopped and went, What am I doing? Like, who am I? Like, you know, it's like, I had no idea what was going on. I mean, I felt so bad, but then reading other people's things, everyone gets to that point at some point, you know, and I'm, I was, I had to laugh about it. I mean, I know if my mom was in her wits, she'd gug skill use me. But it gets you to that point, sometimes. It really does.

Unknown: 28:25

I think our mother sounds similar. Really? Well, I don't know. I just,

Susie Singer Carter: 28:32

ya know, what you wish she a little pistol? Oh, yeah. Yeah. Yeah.

Don Priess: 28:40

And so are we. Okay, go ahead. No, I was gonna say before we then dive into the next step, which was creating the community that you created, which is our I wanted to just ask each of you about just writing during this process in general, even if it's something and and this is for those out there who are maybe going through it right now. Is the writing process during this even if you're not planning on publishing a book or making a book, but just is it do you find it to be therapeutic? Did you find it to be something that boy, this really has enabled me to move to the next because I now have kind of taken that on my brain and put it on paper? Was it something you'd recommend for those who are going through it right now, we were not planning on doing a book.

Unknown: 29:23

I definitely would recommend it as a coping mechanism. It worked wonders for me, I felt the the stress would come out of my fingers into my computer. And it helped me face another day, because I could leave that behind them and move to the next day, reload, decompress. It was it was a coping mechanism for me. Definitely. And I would encourage people to keep a journal for sure. Gene You have different it was not for me. People asked me was this cathartic? And nothing could be further from the truth. For me it was agony to write I read it. And I would put it away. It's like, No, I can't do this anymore. And it was basically agony because of the guilt. It put it away. No, I am not coming back to this. And then it would come to me in the night. Or it would come to me as I was driving to work. And these beautiful phrases would come to me. And I think I've got to go back and write that. And those, those beautiful things would come to me. That's what would draw me back to it. But so it was a mix of agony, countered by beauty. For me.

Susie Singer Carter: 30:41

It's the metaphor of like, diamonds coming from the pressure, right? I mean, it's it takes. Yeah. Yeah. I think that's what with all of us, though.

Don Priess: 30:53

Yeah, even though it was painful that you I don't think you would have to go back and say it now, I wouldn't have done that.

Unknown: 31:00

No. And, you know, it was painful, until we formed all those authors. And through all those authors, we have healed one another, and we take on the purpose of healing others.

Susie Singer Carter: 31:19

What do you say Marianne? About that.

Unknown: 31:26

My experience with Alzheimer's was pretty much professional. At the time I wrote my book, I had three aunts who had had it and understood the situation from that point of view, which was not their caregiver, but I witnessed. So I didn't realize it really like a part of me in the sense that it was was Jean and Vicki, but I knew I just do my work of how people in this situation are just starving for information. And in stories are a great informers. So that is really why I wanted to write this particular story, because I could have wrote a book about anything. Little did I know at the time that this was a very hard subject to put out there. So I didn't really feel like I was being healed by it until after meeting with Jeanne and Vicki and starting off as authors when my stepfather was diagnosed, that was, like, where I went, you know, my, I had these two very close friends that we work together. And they helped guide me through that whole horrible situation where, you know, I, like I said before I had met helped other people navigate that journey, but it's different when you're the one driving the train on that journey. It's you you can't even imagine until it happens to you what it feels like and every, all the obstacles and everything you encounter, because everybody gives you these pat answers as to what to do next and all that but nobody tells you about all the little rabbit holes that surround each step and where you the mind you're going to step on and, and how things aren't going to work out the way you would expect them to. So that was very healing for me is having them there to help me along the way. I wouldn't have made it through that.

Susie Singer Carter: 33:19

I totally relate to that. I think, you know, I'm I'm not I haven't written a book, but I've made movies. And you know, my mum and the girl I I was encouraged to do it. Because of this. The story was so powerful, you know, and ridiculous and like unexpected in my mom, but which is my mom that just personifies her. And and I thought no one's gonna want to who this is a this is not a universal little story. It's the little one off. But we got so many people saying You told my story. Thank you. That's my mom. That's my aunt. That's my grandma. That's my sister. That's my wife. You know. And so we we were blown away. And

Don Priess: 34:06

believe it. Yeah, we were when we were sitting in the edit bay, we're like, is anyone going to relate to this at all? This is so specific. It's so n and to find out that there's so much shared in everyone's individual story is it's it was mine, like you said,

Susie Singer Carter: 34:24

and I used to go to my mom because she was alive at that, you know, up until last year and I'd say Mommy, I'm so proud of you. You're telling your story. And it's so it's touching so many people and I said I'd and she'd go I go she'd go what? Why? And I go because you're fantastic and she'd go That's true

Don Priess: 34:49

you find that same thing that you were there was personal things that you thought oh no one's gonna this is got to be so unique and you have people go oh my gosh, I can't I experienced the exact same thing.

Susie Singer Carter: 35:02

shaking hands. Yes.

Don Priess: 35:03

Yeah. For those listening right now, everyone's nodding Yeah, yeah, go ahead.

Unknown: 35:09

Let's say to me you this story is my story too, which like really meant a lot to me, because I felt that kind of the same way, when I put it out, there was such a niche topic. And when I wrote it, it wasn't a long, it's not a long book, it's only about 50,000 words. And I had all these chapters, and I didn't know how to make them flow. And I remember laying all the chapters on the floor in the living room, and then just like moving them around and put them into the sequence that I that I wanted, and wondering if that was even going to make any sense. Because it has flashbacks, you know, and they go back into the past and explain what happened. And then what's happening today, and it was very urgent. Story, like, there's a lot of action and stakes are high and all of that toward the end. So yeah, it was, it did resonate with a lot of people. And when people would write to me and write reviews on Amazon, and let me know, how much it meant to them, when they saw themselves,

Susie Singer Carter: 36:09

I just think that all these stories don't just, they don't just apply to dementia and Alzheimer's. You know, it's it's really how we deal with any kind of challenge. And, you know, their challenges, are they they run a certain course, they may have different, you know, lanes. But nevertheless, there's the same, there's similar bumps and and we and so I think there's some kind of universality to it. So look at that I said that word. Okay.

Unknown: 36:47

I just wanted to add that, you know, now, eight years later, after the formation of AWS authors, and over 350 authors and their books that we feature, each one is a specific story of events that they think are completely their own, and will not resonate with anyone else. And in reality, they all resonate with everyone, because they're just all details of a progression that caregivers who read them can see that can key into Oh, yes, something like that is happening in my journey,

Don Priess: 37:34

and to be prepared for something that might happen if you're going through it.

Susie Singer Carter: 37:38

Yeah, yeah, it could happen. And yeah, you're not gonna get suckered punched? As much as we all did. Right? When when your mother who loves you, like more than life itself goes, You're a whore? Like what? Are you think I would have been better prepared for that? But I think it's I think it's amazing that the three of you came together, you didn't know each other before you wrote your books. So how did it happen? Tell us this magic. That became when I became als authors, which is so incredible. Now you're now you're an official 501 C three, nonprofit, bravo, I'm really think you guys have just, it's amazing. And you're running on fumes, guys. I mean, we need to raise money for our documentary, but they also need support. So don't forget that everybody, because these kinds of things take, take a little bit of work and manpower, female power, woman power,

Unknown: 38:49

whatever, Mary and you tell the story. So I had written and published the book, the novel and had a really hard time finding my audience for it. So at the time, I belong to a different author group, where we all helped each other by sharing our books on social media and websites, and newsletters and blogs and things like that. It was a partnership. And I was with them for about a year or so. And then one day, it just dawned on me like why don't I see if I can find other authors of Alzheimer's books and see if they might want to do the same thing. So I reached out to Jean and I asked her and she said, It's great idea. We decided to do a one month campaign. And she got Vicki to join us. And so it was for one month Alzheimer's month in June 2015. We were just going to feature each other's books, three books on each other's blogs, websites, social media, and present it out that way. And we really had a good time. So in November when that came around, which is caregiver Appreciation Month, we said why don't we just do this again? And then it In the following year in 2016, is when we decided why don't we start our instead of like blogging and trying to get blog posts elsewhere, why don't we start our own blog and every day in June, we will feature a new book, which was like an amazing undertaking, but we were doing it Monday to Friday. So it was gonna be 20 books. We didn't even know 20 people. So we started reaching out to office, we had authors we had read and who was an you know, who are in the top spots in the Amazon categories, and reached out to people and ask them if they would like to write a blog post, and we gave them like criteria. And at the end of the month, we still had more blog posts when we ran out of days. So we said, why don't we just keep it going, but we'll just do it once a week. And we kept that up until last year 2022, because we were just getting exhausted by it. And in the meantime, we had created the podcast, we were doing virtual events, and we had other things that were going on that we were involved with, and other team members as well. So we split and decided to do a blog post every other week interspersed with the podcast. And so we were doing that for a while. And then this year, things kind of fell apart a little bit because I had another caregiving journey that I unexpectedly went on. And that's ended. So that interrupted my podcast. So that's kind of how we got started. We, we didn't know each other, we didn't have a plan. We just wanted to share the books, we knew that it was important. We knew that caregivers were dying for information. Everybody here was looking for information at one time and couldn't find it. You know, Susie and I, I always correlate it to like the caregiver, you know, 5060 year old woman, I think, in the evening, finally, her loved ones put to bed for the night. And it's quiet. And she says, Let me see if I can get some answers to my questions. I got like 15 minutes, I'll go on Amazon, I'll go on Google type in, you know, Caring for Mom with dementia, and I get a million hits. And so I start clicking. And then soon I'm lost. And I don't even know what I'm looking at anymore, or what I'm looking for. But at all authors, if you come to Alzheimer's dot com and you're looking for something to help you with caring for your mom, you're going to find a collection of like 50 or 60 titles that have all been vetted by experienced caregivers and authors. And you're going to find something in that small cohort, that's going to work for you that's going to relate to you when and you don't have to waste your time sifting through a lot of other stuff that's not relevant.

Susie Singer Carter: 42:41

That's amazing. So I'm gonna throw this to Vicki what when when Marian says you vet it, it's vetted by caregivers? And what is the criteria criteria for someone to, you know, submit their book to all authors? And what do you look for? And who does the vetting? How does it work? Okay,

Unknown: 43:02

good question. It's evolved over time, the way we did it, the first year is considerably different than the way we're doing it now. So I'm just going to talk about now, yes. When someone we approaches us and says they would like to pursue becoming and as authors will direct them to our submission form, in which they fill out and gives them they give us all this information about their book. And we have certain requirements that you need to have a certain number of reviews, like, I think it's about five to 10 reviews, and you'd need to be on to farms and social media actively not just pretend and be open to providing for other people's books. This is a collaborative endeavor, we're not out to just throw out a promote our own book, but we are, you know, under all under the same tent, and it's involves then if well, for every book that we look at, we need to read it first, before we get too far into the process. So if this submission form, looks good, they've met our criteria, then we'll ask them to send us a butchery. And we have our editors, the three of us and we have three other people that are volunteers and other one of our board members and a couple other people that read books, and we then decide sometimes it might be a joint. Someone might say, What do you think about this, and the rest of us will put in our two sensors, and we'll decide whether or not we're going to invite them but if they pass muster, they'll be invited to become an AWS authors and also author and be invited to write a blog post for us and we'll move forward from there. We are booking about seven months into the future right now. So there is a bit of a wait

Susie Singer Carter: 44:51

so Jean, what is the muster that you have to pass when you read the book? What's the muster?

Unknown: 44:57

Well, number one, it has to be written from person All experience, even though we have caregiver guides, and children's books and fiction, but they are all written based upon a personal story, even the caregiver guides, we do not want stages of Alzheimer's, medical terminology, names of drugs, clinical studies, it has to be written from the heart, and it has to be well written and well edited. And I just add to what Vicki said, in that we'll continue our promotion of these authors forever. It's not a one and done, we just we keeps circling back to them and creating social media for them. And our attention is, since we're a global organization, and really, Marian and Vicki and I have only met in person a couple of times in the eight years, I mean, we work in a virtual office space, a Slack space, it's very important that all of our authors buy into the fact that they are promoting the works of other people, that we are a reciprocal community like that. It's, you know, I think Vicki, Marianne, and I, and every author that comes to us comes, comes because of their own work. They want to promote their own book, but they soon learn that there is so much more value in being one of a huge organization of over 350 authors who are lifting you up. So that's the value, instead of being one lone person trying to get your story out there, and you come to love the other books, and there, it is a real sisterhood brotherhood that we form with between our authors. Because we've all walked some parts of the same path.

Susie Singer Carter: 47:05

You get submissions, how many of those submissions percentage wise, do you know? Loosely? Do you reject?

Unknown: 47:13

40? I think I would honestly say 4040 Personal. Yeah. I agree. It has to touch the heart. It has to touch the heart and be well written.

Susie Singer Carter: 47:25

Yeah, it's interesting because as with this my podcast, and I've met so many caregivers, because we're in our sixth season. So it's been it's it's admits a lot of authors. And I've had so many of my guests asked me to put in a good word for them to you. Yeah, say I really gotta get into all this author's good word for me.

Don Priess: 48:01

You ever run into where it's like, it's a very, it's a great book or it but you go, wow, it's just too similar to this one? Or does it matter? Does it mean that doesn't matter? Because it's all because and you do you ever think boy, we're gonna, there's got it's gonna be run out? We're gonna run out of stories. Because, you know, now that you because you don't, because everyone's life experiences. So yeah, we are. We are with all the similarities. Yeah.

Unknown: 48:29

I think that has been what's what's so beautiful about Mary and creating the podcast for podcasters. It's like, how do I find gas? Well, we have 350 plus guests, like, hey, I want to do a podcast, you know, we've got them ready. And waiting. Because they've written a book and we've posted, featured their book on all those authors, and they all want to be on the podcast. So it's been so unique. Yeah.

Susie Singer Carter: 49:00

And I think even with love conquers all, we have people that are dealing with Alzheimer's, their caregivers, or their experts, and you think are we going to run out? Is that are people going to get bored? You know, sometimes I think, am I saying the same things I said last time, but it's okay. It's okay. You know, and

Don Priess: 49:20

everyone's hears or sees everything. So, you know, you're okay. And there are shared experiences, of course, but everyone does have that unique angle. Yeah. Now, do you give feedback and then do they maybe sometimes come back and they make it in is that has that happened?

Unknown: 49:37

Definitely. You know, if we, if someone comes to us, and they have been afraid of social media, they have no social media. We'll help them you know, we'll say, Let us help you start your account. You know, a lot of people they have no idea how to make a graphic to put out on social media. We'll put the time in to help them and if we see them, grab on to that and take off with it will say, please resubmit or resubmit. Once you've had this gone over by by an editor. The door is always open again, as long as it's a personal story.

Don Priess: 50:19

When you give specific notes, like you said, oh, you know that those 100 pages about your that personal history, just know, you know, that needs to go away or something where you get get be that specific,

Unknown: 50:33

I would say I've, I've had some books like that, and I won't say that needs to go away. But I'll say our what our audience is not interested in that they want to read about your Alzheimer's journey, not your personal family history. So that's the way I handle that, sometimes we will give a couple specific thought like on page 45, you might notice other than to see, you probably would need an editor to go through your book. So just to kind of get them started to so they know that we're not just making this up that there actually are some things that they could fix and then be considered.

Don Priess: 51:16

How long is the process from the time somebody submits to the you either get back to them, yay, or nay is it

Unknown: 51:22

try to get back to them fairly soon, within a few days to say, please send us your book. So then the balls in their court, they've got to get the book to us. And then once we get the book, we have to read the book. And then we'll if we accept them will write back and say, you know, we'd like to invite you to become an author. And this is what we need from you, and give the list of things we need. And say we can't save you a spot until we get all your information. So then it's in their cart again, some people are very quick, I've had people turn around in the next day, I have everything and it's good. I've had people a month or two months or more that just you wonder what's going on. And because they were so eager, you know, they disappear.

Susie Singer Carter: 52:06

I want to say I want to give you another compliment is that I know I won't say the name. But I know another author who was been a guest on my show, our show and then had self published and went on, you know, became an author, and now has a proper publishing deal. And and, and that I know, you know, yeah, someone we all love love dearly, dearly. You provided that opportunity. So it you know, and it's because this particular author is very self motivated and very, you know, he's very, he or she is very resourceful. And, and, and really use the platform to benefit the progression of this book. So it can be done. If you're listening and you want and you feel very, you know, ambitious, and you want to you know, get start seeding your your art, I mean, this is this is a wonderful organization. And again, I say support this organization, as well, because there's not enough support. And if there's not enough real support, and very, I'm very blunt these days, but there's just not enough real support for caregivers. There's a lot of Hyperbole and a lot of noise out there. But that doesn't mean it's good care, it's good. Support. There's a lot of people that are let see a big number of caregivers, that 53 million caregivers and you know, it 53 million times $1 is $53 million, right? So there's a lot of people, there's a lot of capitalism going on. So be careful. Be careful about the information that you're taking, get Be careful of the sources, you know, look for people like, like Vicki and Jeanne and Marianne, who actually have you know, walked the talk been in the trenches and get it and actually have a real purpose because, honestly, I, I, I've been in this community for 17 years now. When my mom was diagnosed, you know, she passed away last year was diagnosed 16 years before that. And this, this industry has grown so big, because of the population of caregivers, and so whenever there's, you know, an opportunity for people to capitalize on that they will. So that's become an issue and I'm just putting that out there because here we have a great, you know, all's authors is authentic. It's real. It's it's nonprofit in the, in the, the most, you know, nonprofit where you can be and so, I mean, there, you know, there's nonprofits who are nonprofit, but yeah, just just just Try to be discerning about where you're getting your information from. Because it's really important, because a lot of times a lot of a lot of care support is no support really out there. So this is a place to go to really get good support. And,

Don Priess: 55:16

and I think you consider, like, you know, right now I'm looking at four different people who are past it, they're, you know, they're not caregiving anymore, but they're still here. And that that, to me, tells me it's far from performative. Far from just surface and opportunistic. These are people who really care. And I think, you know, if you're out there looking for people who care, consider that consider the ones that are still doing it after their journey has ended.

Susie Singer Carter: 55:45

Yeah,

Unknown: 55:45

thank you, John, I wanted to just say to that, I would never want to discourage someone who was self published, from submitting to all those authors, because both Mariana and I are self published authors. But we did it with precision. And we wanted to put a really quality product out there with a good cover. And we look for the common story, the everyday person's story. So if you're self published, and you've done it, well, please consider submitting.

Susie Singer Carter: 56:24

Wow, this is great. Did we do we have any other anything that we missed that you guys want to put out there? Talk about compliment, say anything? What's a recipe I don't know. And

Unknown: 56:38

this is our our eighth anniversary, our eighth birthday and jubilation.

Susie Singer Carter: 56:44

Happy anniversary. That's, that's awesome.

Unknown: 56:48

We've just started a new initiative in the past year, to these books that live online. On our website, we have begun custom caregiver collections where people can order a custom set of these books for like, their senior care community or a doctor's office or so we're trying to bring them out of cyber and really into people's hands.

Susie Singer Carter: 57:15

Oh, that's great. That's really wonderful. Yeah, we can put that in the show notes, too. So let me know about that.

Don Priess: 57:22

Yeah. But we'd have you saying it. So it's fantastic. Yeah, we

Susie Singer Carter: 57:25

have? Yeah,

Unknown: 57:28

I want to tell you about, I'd like to tell you about the most recent event that we did, which ended up being a huge success, and I'll spill the beans on it, just because it's us. So we wanted to put on a poetry reading. So we had about, we have about 17 books of poetry in our collection. So I was the one in charge of this project. So I take complete responsibility. So I wrote an email introducing, inviting these authors to come to the poetry reading. And when I finished it, I double check to see who I was sending it to. And I had it set to go out to everybody on the list, everybody that we mailed to, which was like 1000s people. And so I don't know, I know, I don't want that list. So I changed to the list that I had made for this particular event, and sent out the email. And then the next thing I know, I'm getting responses from people that I'm like, oh, that person's not on the list, and why are they wanting to come? And they're not a poet. And then I looked and I saw that I hadn't, what I did was I didn't save it. After I chief switched the list to the list of 70 people and it went out to 1000s people. So I said, Oh God, what are we going to do now? Because I mean, I'm getting all these great responses from people that we weren't expecting. And now I have too many people. Right? So we said, okay, you know, it is what it is, we'll just let everybody come and whoever comes comes, and we're just not gonna worry about it. And so we ended up with over 30 poets on that day, which is a lot of poets amazing. Yeah, it's a lot of poems and took us about two hours to get through everybody, and they got to read twice. So they got to be like two poems or whatever. And it got so much the commentary and the response to it was just tremendous. And like, we didn't expect that I didn't expect that. I mean, I figured it would be a good event. You know what, I did not expect the breadth of it and set now you can either listen to it on our podcast, it's in two episodes, I had to split it in half. Or you can watch it in whole on our YouTube channel. And see the poet's reading their works. And some of them I mean, there was laughter and tears in people's stories. You know, some of the poems were very elegant and complex and others were just very simple and just told all of these different points of view and stories about their loved one about their mom and the husband. I mean, it was just it. You didn't want it to end. It was a beautiful thing. So it's called poetry for the dementia journey. You can find it on our website on our podcast in our YouTube channel.

Susie Singer Carter: 1:00:16

You'd have lovely.

Don Priess: 1:00:17

See, it was a beautiful mistake, but that was a beautiful.

Unknown: 1:00:22

Okay, well, that's kind of the whole story of also authors. We never had a master plan in this. It just was fly by the seat of our pants as people came to us. It's like, okay, okay, well, we'll make this grow.

Don Priess: 1:00:36

That's kind of what caregivers do. They fly by the seat of their pants, right?

Susie Singer Carter: 1:00:40

I just enjoyed talking to you guys. This has been long overdue. And, you know, we love Marianne. And by the way, thank you for being so supportive of everything that I've been doing. You You are always retweeting and reposting and you're just really, you know, the real deal. You are the real deal for sure. Yeah. So you're

Unknown: 1:01:04

all in it together.

Susie Singer Carter: 1:01:06

Yeah. Happy to leave variants Schuco You guys are awesome. Gal to all authors. If you need anything, get those new, those new compilations of books for gifts and, and listen to the poetry webinar and be part of the community and know that when you if you go to authors, you're getting, you're getting good information. It's real. So thank you, ladies, and I love you so much. I think you guys, thank you love you, too.

Don Priess: 1:01:40

Thank you so much. Thank

Susie Singer Carter: 1:01:41

you. Bye, bye. Bye. I love those ladies, don't you?

Don Priess: 1:01:47

They are they really a real deal? They're really the real deal. Yes, fine.

Susie Singer Carter: 1:01:53

Marian cracks me up because I when I first when we first interviewed her, and and. And we had we felt like she was very like scholastic and you know, prim and proper, we didn't know. And then when we told her about our podcast, I love Lucifer, which is for Yeah, which is the comedy horror. And it is there's a lot of expletives in there. And, you know, and it's, and she went and binge it and lab salutely loved it was like, promoting it all over the place. So we just, we just like, love her because she's so surprising. And so great. And this was fun getting to meet her partners too, right? Absolutely.

Don Priess: 1:02:33

Jean and Vicki, were just like, you could tell that just the bond that they have, even though they said they've, you know, they've only met each other like twice in the eight years in person. But the bond they have in their in their common, you know, vision. And welcome to 2023

Susie Singer Carter: 1:02:51

where people don't don't actually ever know person.

Don Priess: 1:02:56

Exactly. But it's working. And they just keep growing. And it's really it's so unique.

Susie Singer Carter: 1:03:03

done from the it's done from the heart. It's done from a right place. Yeah, done. Yeah. And so well, that's because you know, what's

Don Priess: 1:03:11

done from its love. From love. You know, here's a little behind the scenes, you know, every week we have to figure out how to get to where we need to end this thing which is working in the word love. And we just did it in a seamless way. And now we have to do it again because it wasn't that smooth. Do better.

Susie Singer Carter: 1:03:40

So you know this podcast she if she can do it now. Yeah. Always at the end of every podcast you just think what what was the engine of every one of these stories with every one of these journeys? And I would say that the engine is love

Don Priess: 1:03:58

you What has Yeah, be well be you know why? Yeah. And that's because love is powerful. Love is contagious. And love conquers conquer solves. It does. And we would love love if you would like if you would love us like us, follow us share

Susie Singer Carter: 1:04:19

and sponsor us come on board. We swear. I'll make a great commercial for you.

Don Priess: 1:04:26

Sure, if you if you really feel like you need 100% tax donation, please consider donating to No Country for Old people or documentary that is going to hopefully change the way that our nursing care and health care system handles our most beloved people who are and in fact Guichard agrees that

Susie Singer Carter: 1:04:53

yes, it's all tax deductible. You can find where to donate in our show notes. It's that were our fiscal sponsors the national consumer voice for quality long term care. Thank you. We love you and we'll see you next time.

Don Priess: 1:05:08

Absolutely take care