Jean Lee: 0:00

I think what is unique about AlzAuthors is that our number one criteria is that every book has to be written from personal experience. But the personal journeys helped me. And so we look for that in every book we bring in.

Rayna Neises: 0:17

Today we have special guest Jean Lee. Welcome to A Seasonal Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host. While working full-time as a third grade teacher, both of Jean Lee’s parents were diagnosed with Alzheimer’s Disease on the same day. Although she never considered writing a book, the experience of balancing roles of teacher and caregiver poured out in her first book, a memoir, Alzheimer’s Daughter, through that experience, Jean connected with other authors of Alzheimer’s books and co-founded AlzAuthors.com Their goal is to seek authors of best-selling Alzheimer’s books and ask those authors to write 500 word posts about the story behind their stories. After seven years, there are over 300 voices strong, all striving to end the silence and the stigma of the disease Hi Jean it is so good to have you here today.

Jean Lee: 1:10

Hi, Rayna, thanks so much for having me.

Rayna Neises: 1:13

Oh, so we have journeys with similarities, for sure, because I actually was a teacher at one time. My favorite grade to teach was fourth grade. I did a lot of different things, but they were my favorite. And obviously this journey of both parents suffering from this disease that is really undescribable when you haven’t been there, there’s really not enough words. Though what we do, right? I’ll be write about it and talk about it. I’m trying to help prepare People because it is such a difficult journey. So share with our listeners a little bit about your journey and what led to your publication of your memoir Alzheimer’s Daughter..

Jean Lee: 1:53

Oh, thank you, Rayna. Well, I never intended to write a book, although I was an avid reader and I always read to solve problems. As my parents began to change at around age 80, my sister, I was the hometown daughter and my sister lived a thousand miles away I live in Ohio and She had always remained very connected to our family. And I would talk to her by phone and say, these odd things were happening. And she always believed me. She was never like, ah, you’re just imagining that. She was my greatest support, my therapist by phone. And she suggested that I keep a journal so that when we talked, I could open that and we could talk about specifics, frequency. So I did, I began that. Wrote in it nearly every day, took it to doctors offices with me. It was simply a spiral bound notebook that none of my third graders wanted because it had a black cover on it. And I felt such guilt in writing things in that because our parents were wonderful people that I hide it in the bottom of junk drawer and wrote a preface on it that if anyone should find this I hope they understood that I was writing it to show a progression for my parents. So it was probably about a decade journey for both of my parents and my sister and I supported them in their home as much as we could. I stopped every day after work filled medicines. The house became very disorganized, cluttered. They were unsafe there. And our objective became to be proactive instead of reactive. I was working full-time, my sister was working full-time. We could not take them into our homes. So we started looking for senior care communities and that was a real battle to get them to agree, to move. A week after my mother passed, I was sitting with my father and he asked he had no recollection of my mother and they’d been married for 60 years.

Rayna Neises: 4:09

Wow.

Jean Lee: 4:11

And in that moment he had no recollection of her. And this had been such a private journey for me because I lived in a very small town, but I really thought perhaps this experience could help someone else who was going through something similar. Like the books I had read had helped me so much. They sustained me. They let me know somebody else survived this, get up, put your feet on the ground and walk each day. Keep breathing. So I really then thought, okay, I’ll write these things. I’ll flesh this journal out. And it will be basically for my family, published it on Amazon, hoping only my family would buy it really hoping it would grow dust and mold in Amazon’s basement and other people started buying it. And when reviews came in, it was like, I just, I didn’t even want to open them. I thought someone is going to say you evil daughter. How could you write such personal revealing things about your wonderful parents, but the reviews were not that the reviews were, thank you so much for writing this. And this has helped me. And so that gave me a little more confidence in what I had done. And at that point kind of to make a long story short. I reached out to some of the authors whose books I had read, because I still needed that validation. I was still so guilt filled and I sent my book to Marianne Sciucco had written a beautiful Blue Hydrangeas. Thinking, oh, she’s going to throw this in the trash. She doesn’t have time to read my book. I mean, it was really reaching for greatness for me. And she contacted me and said, Jean, your book is beautiful. There are so many people who need help in this journey. Would you work with me to elevate this niche genre of writing about personal experience with Alzheimer’s would you work with me to find an elevate these books? And I was like, well, yeah. And then she asked who else I had read? And I told her, I read Vicki Tapia, Somebody Stole My Iron. We reached out to her and so that was basically in 2015 that we started working in the three of us together to gather these books such as yours, No Regrets, which is a beautiful addition to AlzAuthors. The creation of AlzAuthors, the three of us and as that has grown, we now have five managers and numerous assistant managers who do different things for us, but that has healed my soul. Because I felt such guilt in writing. A lot of people say, oh, writing my book was cathartic. You know, to get it out there on paper. It was so much not that way for me. And I was just, I couldn’t stop writing it. I try to stop. And then it would come back to me in the night. There’d be this phrase, I think. Okay. That has to go in. When I drive to work and back, I drove past the cemetery and there were just all these accumulation of thoughts that came to me. And so I would have, I think been eaten up by guilt had it not been for kind readers. Who reviewed it in a positive way and for the formation of AlzAuthors and all the wonderful people we’ve met through that, that we all share different parts of a journey, the same journey.

Rayna Neises: 7:56

I love that you said you’re a reader and that’s how you kind of solve your problems because that’s my personality as well. And I think that’s part of what makes us then want to be able to be a person that can share, our journey so that we can encourage others. It’s so important to find that common feeling of, I’m not the only one. I was so young when my mom was diagnosed. I was the only one left in the house. I have one sister as well, she’s older. And so she was off to college when mom got her diagnosis. And that was such a lonely, difficult time because though we knew she had Alzheimer’s, it didn’t change how we lived. And so my dad still believed my mom. Hello, we would expect her to, right. So when mom said Reyna, wasn’t where she was supposed to be Irina wasn’t home on time. And I didn’t know where she was. I got in trouble. And so that journey of not really getting how it impacted what was really happening to us. And I think being able to share with others, .Stories so that they can not feel crazy. I’ll never forget when my sister was still home. One time, my mom, not knowing where she and I were, she was driving at that time. We were played softball. I’m sure for my mom, it had to have been terrifying as well to not know, to forget things. We would come home. Where have you been? Well, we were, went to softball practice and then we went with the girls and got a Coke or whatever, and she would be angry. And I can remember her telling us one time. You’re just trying to make me think I’m crazy. And when I look back on that, I just think, oh my gosh, how sad for her? That that’s how she felt, how she was interacting with the world. It impacted me deeply to think that my mom felt like I was doing that on purpose. Making her feel that way. But once my sister was gone, that safety net was even gone. That opportunity to be able to say to Robin, we did tell her right? So it was just me and it was that we’re continuing to get worse. I think we look at sharing our stories, we can stop feeling so crazy. We can start realizing we’re not the only ones who are experiencing these things, both with our loved one, for our loved one and for our own sanity, because it is such a hard, long unexplainable season.

Jean Lee: 10:22

You know Rayna I just so agree with that because when you suspect your loved one has dementia or Alzheimer’s. I mean, it takes up a while to get the diagnosis. If you ever really do get a firm diagnosis, but this is not something you share. This is something very private for me. I lived in a very small town, worked in a small school district. It wasn’t as though I was telling people, Hey, I think my mom and dad have Alzheimer’s. It’s very private. I didn’t, I made a conscious decision not to violate their healthcare privacy. It was not mine to talk about. And so since I live in such a small town, small school district, there were many of our teachers were not from our area. They came from a neighboring, larger towns and they had experienced a loss of a parent recently, and I had a suspicion you know what had happened. And I would say there were two or three women that I taught with that we, not from my town. We formed an alliance where we could be honest with one another we’d stop in each other’s room on the way in and say, well, how was your night, last night? What happened? And I side from that, less than a handful people and my sister was a thousand miles away. There was no one for me to talk to. It was a very private. Also you brought up, do they feel? How did your parents feel? And I wanted them to be able to continue their life, going to church and doing the social things they went to the restaurant. Restaurant that was a block away from them twice a day for breakfast and for supper. And I wanted them to be able to do that without people thinking I had spoken about them behind their backs. I know people realized something was a little off, but it didn’t need to come from me.

Rayna Neises: 12:38

And that is such a hard balance to know how to share when to share, because there is a point in which you have to, and I know for us, restaurant’s got to be a challenge for my mom and some of the unkind things that were said by servers or the way in which people looked at my dad when he mothered my mom, you know, as far as ordering for her or cutting her food up, it was amazing how little acceptance there was of that. And I think that’s one of the things that I love about AlzAuthors is it allows us to, normalize because this is so much a normal. Situation for so many families. There’s more of them out there than we even imagined that our journey through this. And if they can find a book that helps them understand they’re not alone and they’re not crazy, and this is hard and it is going to be one of the hardest things you do in your life. But when you find out how to engage and treasure and make memories with them, it will be a valuable time of life that you can pull so many amazing gems of personal growth, as well as just those personal memories that you wouldn’t have a chance to make if you don’t engage with where they are.

Jean Lee: 13:59

Yes. And I think as readers. You and I both know that what we read from other people about their journey. None of it was identical to ours. And I think, you know, people might think, well, nobody’s journey is just like mine why should I read about theirs? But in my journey, Was overall such a peaceful journey my parents and my sister and I, we had always been a peaceful family, my sister and I grew a stronger relationship through that time. But much of what. We have an all’s authors is the reality of family conflict

Rayna Neises: 14:40

Hmm.

Jean Lee: 14:41

or the reality of very devastating time through Alzheimer’s and reading that is so valuable too, because we gain compassion for what somebody else is going through. But I always felt like there was a kernel of truth in everything that I could carry away. And what would help me in my journey. And I think that’s in AlzAuthors we find that in every book there is some kernel of truth that will help someone else help light the way through their dark journey.

Rayna Neises: 15:16

I agree, as you said, no two journeys are the same. Even we saw both of our parents journey, they looked different, even though the disease was common, but realizing that you’re not alone. And finding those little nuggets of truth that you can try, know, see how does this work for me? Or how would this work for my sister as we’re in different places within the journey. So I do feel like there’s just invaluable opportunities. The stories are really about the journey about this is our experience. And it’s not about a, how to, because there’s a lot of that out there too. But I think the personal emotional side of it is so valueable. So share with our audience little bit about the different kinds of books that you have on AlzAuthors.com.

Jean Lee: 16:03

Thanks for asking. I think what is unique about AlzAuthors is that our number one criteria is that every book has to be written from personal experience. Reading stages and medication names and medical lingo did not help me at all. If I started a book like that, I had to put it aside. I knew what the outcome of this was going to be, but the personal journeys helped me. And so we look for that in every book we bring in. And yes, we do have books written by doctors that are wonderful, but there’s always a personal twist on that. So we have memoirs written by all kinds of people. We have memoirs written by adult children like you and I written by daughters written by sons. We have memoirs written by spouses, which is a very different kind of a thing. Caring for your spouse, who you expected to live your entire and something happens to them, Alzheimer’s or dementia related spouses or partners. So those are very raw and revealing. Some of my favorite books are those written by people who are living with Alzheimer’s and dementia. And they were always word writers. So they are comfortable, still writing their own journey and they are going to write it until the end and for us to be able to see through their eyes what’s really happening them. How they feel about what’s happening. I think those are so wonderful. We also have quite a few books written by grandchildren who became the caregiver to their grandparent. That would be a huge sub genre of what we have are the memoirs. And then we have a lot of caregiver guides to that are basically, this is what you should have in order. This was my experience. And this is the way I can guide you through your journey. We have a lot of those written by physicians as well, but all with a personal twist. We have fiction, a lot of people think, why would I want to read a fiction book, about Alzheimer’s, any fiction books that we bring in could have, oftentimes like you and I Rayna, we might not want to really reveal that this happened to us, we will write it in a fictional way about a character. And those are very real portrayals of what is happening, though they are classified as fiction. We actively seek books for children in teens. And I think this is an area where every home should have a book for children about Alzheimer’s so that as family members age, they’ve got that beautiful book to read. Children hear what’s going on, even if we think they don’t and they have all of these questions, what is happening to grandma and grandpa and teenagers are trying to live their own life. And are being impacted by their parents who have taken on a caregiving role. So those books for children and teens are very worthwhile. And then we bring in books of poetry, quick reads books, art books ways to engage someone, a loved one who has Alzheimer’s and dementia through art. So we try to bring in all these different aspects, but all of them have a personal twist in them.

Rayna Neises: 20:13

I love that there are so many different kinds, because like you said, there are as many different kinds of people who are in caregiving roles or family members who find themselves facing this there are people, right? Just like the journey is different the caregivers are all different and their needs and supports are different. Going back to our common teaching. I think it’s so wonderful that there’s so many great books available to talk to kids about what’s going on. My niece is a senior this year and my sister shared with me an essay that she wrote for an Alzheimer’s Association, a scholarship. My niece was just 15 when my dad passed away. So she was nines ten, whenever we started this journey realizing I’m actually younger than that, whenever we realized that something was going on with my dad, but she spent a lot of time at my dad’s house with my sister and not really talking, not really asking questions and, you know, early teenagers first, especially she was a typical early teenage girl. Right? So not always happy about being dragged here or there, or needing to go do something for grandpa, but her essay was beautiful in just what she saw and being able to say how much she watched her grandpa change and how much she watched her mom sacrifice to be there and to support him and to take care of him. So they do see so much and they are processing it in their own ways. And like you said, I think it can be so helpful to pick up that book even no matter the age, whether you’re reading it to them and having those conversations, or if they’re doing that on their own. So to have a place like AlzAuthors.com to be able to go and find what you need even if it is to gift someone cause I think sometimes in the thick of it, don’t notice the impact on them when we are the caregiver. We’re just trying to help them have as normal of a life as possible. So we probably don’t have as much conversation around what’s happening unless the events itself happens, that a book could really help to bridge that gap.

Jean Lee: 22:26

Rayna sometimes since I’m a book person, I tend to focus on the books of AlzAuthors, but I tend to also neglect our bloggers because our site, AlzAuthors.com is about books and the best blogs that we can find. We’ve concluded that the books are about a journey that is completed. Whereas the bloggers are so helpful because they are in the thick of it right now. So when someone connects with a wonderful blog about. Alzheimer’s through us. They’re getting help in the now, which is really important. And we’ve also in the past couple of years added a podcast like yours Untangling Alzheimer’s. And so we have this vast array of these 300 author books that we pursue for a quick post, a 500 word post, but then on the podcast, we are able to speak with them more in depth and people can listen to that on the go. Podcasting is just such a wonderful platform there. And then on AlzAuthors.com, we have a page that is our bookstore. So when you go to the bookstore page, each book, cover links straight to Amazon. So if you click on a book cover, it’s taking you straight there so that you can have the book on your Kindle. It can arrive in your, at your doorstep in a couple of days. And many of them are audio books as well. When you access a book on Amazon through our site, it does not cost a penny more than it does by going straight to Amazon, but we’re not an Amazon Associate. So it’s like they pay us for that pipeline that we bring to them. They give us 4 cents on the dollar approximately for that, since we’re a nonprofit that helps. So that’s pretty much what we do. It’s a work of passion of heart. None of us. Collect a dime from doing this, but we, all work remotely from different parts of that United States and Canada to bring these offerings to our readers and followers. So because of the passion.

Rayna Neises: 24:55

Well, thank you so much for being a guest here today, jean it has been. To be able to hear more of your story and to have you share your passion. It definitely comes through important you see this process of helping to support others who are in this journey. And I love that part of it is to take the shame outs, because I think that is such a piece of it for families. It’s so much harder to deal with something that we’re trying to act like isn’t there in a whole part of our lives. Really helping us to bring it out into the open remove the shame of it. It’s a heartbreaking situation to be in, when we can be honest and ask for the support that we need, it helps as well. So you again for being a guest today.

Jean Lee: 25:38

Rayna. Thank you for allowing us to elevate your wonderful book. No Regrets.

Rayna Neises: 25:43

Thank you. So listeners, be sure you check out AlzAuthors.com, find the podcast as well as the blog posts and support them through purchasing your books there. They are a nonprofit, so if you’re looking for a nonprofit to support, keep them in mind as well. And just a reminder. A Season of Caring podcast is created for the encouragement of family caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of care.