Fears About Inheriting Alzheimer's

with Melissa Smith-Wilkinson &
Dayna Steele
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Dayna Steele worked with the world's greatest rock stars for years, observing what makes a rock star and what makes a fleeting one-hit-wonder. This rock radio Hall of Famer brings her Rock Star Principles of Success to The Rock Business: entertaining podcasts, popular speeches, best-selling books.

 

Check out her wonderful book:

Surviving Alzheimer's with Friends, Facebook, and a Really Big Glass of Wine: https://amzn.to/2X6byTR 

Her podcast and other books: www.therockbusiness.com 

Melissa Wilkinson

Welcome to Caregiver Wellness podcast, we're so glad that you're choosing to join us today. I am excited to introduce you to our guest, Dayna Steele. She is a well-known radio personality, as well as a former contender for Congress in Texas.

 

Melissa Wilkinson

Also, she had a very intimate experience with Alzheimer's disease. Her mother was diagnosed, and she consequently turned to social media and Facebook to process. Out of that came a book and she's written nearly a dozen books on many topics, but this one, in particular, is the focus of our discussion today. We talk about how and why she was so honest with strangers on Facebook, and how cathartic that was for her. And how you can create your own community, and how important that is for caregivers. We also talk about what she would do differently. You really want to listen for this. It's toward the end of the conversation.

 

Melissa Wilkinson

What can you do and what do you need to do? That is one really key element, and it's something she completely forgot to do and it's so important. So, you want to listen for that.

 

Melissa Wilkinson

And also, we take a frank discussion about her concern for having Alzheimer's and what she is actually doing about it to combat any symptoms of the disease. So, I think you're really going to enjoy this conversation with Dayna Steele today. Thank you so much for taking the opportunity to join us. And, of course, one of the best things that you can do, which we also discuss in the podcast, is to share this.

 

Melissa Wilkinson

So, the more people that that hear about the disease, the more we can bring light to it. We can bring funding to it, awareness, reduce the stigma. You're a part of that. So, share this podcast. You can also give us a rating. That'll increase the chances that other caregivers will find us and listen and then share it with their networks. So, all of that is so important in combating this disease --is just continuing to get information out to caregivers that need it.

 

Melissa Wilkinson

And of course, we have free online retreats. There are no strings. We just would love to have you join us. You can sign up at https://www.caregiverwellnessretreat.com/ for our newsletter, and you can be a part of the exclusive audience next time. So, we have our own private Zoom audience of caregivers that join us and then can ask questions without being recorded at the end of the podcast. And so, it's a really special and unique part of our recording.

Melissa Wilkinson

So, thank you so much for joining us today and I look forward to hearing your thoughts.

Melissa Wilkinson

Perfect. So, welcome everyone, if you are joining us live on Zoom or on Facebook. We have really --now this is becoming a thing; I was a guest on her podcast and she's here. And then I'm hoping we get to do some more things together in the future. Dayna Steele! And she's worked as-- I love this --world's greatest, rock star, radio personality.

 

Melissa Wilkinson

What is so incredible to me, Dayna is it's almost like that six degrees of separation thing. Like you've interviewed so many incredible people. And it's a gift that you have to connect with others, so it's a gift to connect with you. Dayna has written a lot of really fantastic books that are super concise and really helpful. In fact, her latest book, How to Run for Office is pretty cool. But we're here today to talk specifically about her relationship to Alzheimer's disease, and the book that she wrote specifically about it.  And how that came about, about her mother's progress of the disease. You know what I realized, Dayna, in reading through your book is March -- so this time of year was when you first put her in, or had her go into assisted living, and sort of understanding the disease. And so, it's a little bit of an anniversary.

 

Dayna Steele

 See, I didn't even remember that. And I think you're right. I think it was like March, maybe March 13th. So, yeah.

 

Melissa Wilkinson

8 years ago!

Dayna Steele

When we first got the diagnosis. Oh, well, you know, and I live it every day. I live it. Not a week goes by that I don't hear from either a friend or a stranger who says, mom, dad, grandma, grandpa, wife, husband, sister, neighbor, friend. Somebody was just diagnosed. What do I do?  Nobody knows what to do. Because we don't talk about it. 

 

Melissa Wilkinson

 We don't talk about it. You know, and I wanted to-- something that really, really stuck out to me in your book. There was a Seth Rogen quote, and I'm not even sure, you know, he went-- didn't he go in front of Congress?
 

Dayna Steele

Yeah, that's when he testified. Yeah. His mother-in-law, whom I think has since passed, had early-onset Alzheimer's. And he and his wife, they have hilarity for charity, which raises money that's been delivered in the form of grants to caregivers. They do a lot for caregivers. 

 

Melissa Wilkinson

Yeah, they're amazing. They're actually one of our partners and they've been incredibly generous. By partners, meaning we don't-- we can't afford to do all of them, to sponsor them, but they just generously support us and share our information, which is incredible. But that quote really struck me from Seth in his speech in particular, because however many years ago that was-- it is still a stigma. It is still...

Dayna Steele

Nothing changed.

 

Melissa Wilkinson

It really does feel like it’s changed. And that is so frustrating to me. Why do you think that is?

 

Dayna Steele

Um, because... It's... It's so frightening, it's so-- I mean, any sort of disease is frightening. With cancer, though, you know what to do. You have to go get the treatment. You have to do this. The cancer patient is not running down the street naked singing a song from Mary Poppins like it's perfectly normal. Not that my mom did that, but I mean. It's such --I tell people it's such a crazy-ass disease, and it's so confusing, and it goes off in so many directions, and it manifests in so many ways. The nicest person in the world, like my mom, turns out to be the meanest Alzheimer's, patient. The meanest, most uncaring person in the world becomes, you know, the sweetest. They just become different people, and nobody likes anything they can't control. And no, you can't control cancer. You can't control other diseases, but you have an idea of what's coming, and what you need to do, and how you need to handle it, and how you need to plan. Alzheimer's... Yeah, there are certain things you need to do, but you never know what direction it's going at any given moment of the day. Anywhere in the journey, it changes constantly. You know, one of the things I talk about two or three times in the book and we're still working on this in the play I'm trying to do because it's so powerful, is explaining those moments of clarity that come out of the blue. You know, that's when people think, "oh, mom's coming back."  Your like "no, no." So, it's just all these weird things that nobody tells you about. Nobody tells you how cool that moment of clarity is and how sad it is at the same time. When you see your mom back for about 46 seconds and then she's gone again and you don't know where she's gone, that was the problem. Where have you been, and where did you just go back? What? We were driving and my mom was very-- she always had the best posture, and as the disease took over, it was just... She was just this curled-up, sad gray little woman with this weird haircut. Look, I'm one to talk. Because she had always been so perfectly well-coiffed. And I was sitting at the red light and she sat up, which I really took notice to, and she looked out the window and then she looked at me, and she said --in her perfect voice, and she had pretty much started to lose speech. She was very weak sounding and she said, "I'm never going to drive again, am I?" And I... I can't tell you how many times "holy shit" went through my mind in probably what was four seconds, but how do I react? What do I do? I don't freak out, and I just looked at her and I said, "God, I hope not." And she started laughing, that laugh. She had this incredible laugh and the light changed and she went back. She went away. So that was really-- I think that was the last moment of clarity I had with her. And I got one of my favorite things, and that was her sense of humor and her laugh in those just a few seconds. But how do you explain this to people? And that's why people just don't talk about it, because for some reason or another, it's embarrassing. And it's sad because, you know, there's no... There's no cure, it's not going to get better.

Melissa Wilkinson

No, but I love your dark humor and how you utilize humor to kind of cope in the moment that sort of, as you said, "out of control feeling". It's a way to make sense of being out of control. So how else is humor helped you or helped you at that time?

 

Dayna Steele

Oh, at the very beginning, I don't remember what it was, the first thing she did that made me start laughing, and then I felt so guilty. Well, of course, at this point, I was already you know-- I have no filter. I've never had a filter. Maybe a little bit of a long time ago. But I immediately started posting on Facebook when she was diagnosed because I just couldn't say it 100 times. "Mom has Alzheimer's" and I'd called the family and I was done. I figured I'll just put it on Facebook and her friends can spread the news. And it became my therapy, it became my village, it became my support group. So, the first time I really laughed out loud at something silly she had done, then I felt tremendously guilty. And so, I went on Facebook and I said, “I feel tremendously guilty. Here's what happened." And it was overwhelming. If you don't laugh, you're going to cry. So, you have to laugh sometimes. And I've always found humor is a great way to diffuse. I mean, I was running for Congress in Southeast, Texas. I would have been the congresswoman for the home of the --you know, the Klan. Sorry. That's what it was. The grand wizard lived in my district. And, you know, I had to diffuse a lot of stuff with humor. I knew these people were never going to vote for me, but I needed to make sure they weren't going to kill me either. So, you had to use a little bit of humor.

 

Melissa Wilkinson

And it also makes you human and relatable. I love that you seem to have no fear in terms of sharing with strangers on Facebook. It also made me incredibly sad reading about how family and how friends just dropped, and dropped, and dropped off until there was no more support.

Dayna Steele

That happens to so many caregivers. That's another thing I really try to warn caregivers. Is, you're going to have to create your own support group, whether it's go find one at a hospital or a doctor's office. In my case, it was Facebook. I already had, you know, a following of thousands of people for being on the radio and writing books, that sort of thing. But you must find a support system, and a lot of the people that you think are going to be there...My mom had some of the closest, most amazing friends. She was a tennis player, so it was her tennis group. And they were together for 20, 30, 40 years and they pretty much disappeared. I think a lot of that is because it's so uncomfortable, and it's so sad, and they don't know what to do. And it's their friend, and it looks like Fran, and they've come to visit Fran, and it's Fran's laugh. But that's not Fran. Fran doesn't have any idea who they are. So, they just stopped coming. But you have to learn that this is going to happen and don't take it personally. Forgive these people later on. I didn't think I ever would, but I'm not much of one to harbor a grudge. And the more I learned about the disease, the more I learned about-- you just have to forgive these people and move on. But find a group, you got to find somebody that's there for you. Like you.

 

Melissa Wilkinson

Yeah, yeah. You have to make a family. Also, I think which is interesting and people won't do this. We talked about this when we chatted earlier was-- you know, you have to tell people what you need. That's one of the hardest things for caregivers to do because you don't even know what you need. But one thing I wish my father had done is these friends that dropped off. I wish he'd said, "I need you to just show up, even if just for me." Because I don't even think they realize it, they don't. They have no idea that what they're doing is so hurtful.

 

Dayna Steele

Right. Right, and there were many times I wanted to reach out, you know, but it was also uncomfortable for Mom, I think. I remember taking her to the country club to meet all these tennis players and have a lunch one day and, you know, I didn't realize she seemed a little bit off on the way there, but she also seemed genuinely excited. But it was only once we were really in the luncheon with all these loud ladies who were laughing and talking and having a great old time that, you know, everybody talking at the same time that I realized mom couldn't follow the conversation and she didn't know who they were. They looked familiar at this point, but she was very frightened to tell me she didn't know who they were because she didn't want to hurt my feelings. That was kind of person my mom was, she always took care of everybody else. And I'm sure it frightened her a little bit, but she was really concerned to tell me she didn't know. I got up to help her go to the lady’s room at some point and she goes, "Now, remind me again who these ladies are? These are your friends, right?" And I just said, "Yeah, yeah and they love to play tennis." You know, "you played tennis." Oh, yeah. Oh yeah. That's what she would say. Oh, yeah. Oh yeah. So, because she thought she still played tennis pretty much until the end.

Melissa Wilkinson

Wow. Well, there is a story that you talk about your mom loving peanut M&Ms.

 

Dayna Steele

Oh Lord, they became weapons.

 

Melissa Wilkinson

(laughter) Oh, no. But in the beginning, when she was --it was like she rediscovered something she loved every time she ate it.

 

Dayna Steele

Well she had peanut M&Ms she always had a little-- she was a jeweler. So, she had those little baggies, like you would buy beads in, or whatever. She was a jeweler. So, she always had these little baggies around for diamonds and jewelry, or whatever. And so, she would fill these little bags with Peanut M&Ms and then when she was headed out each day to go to her jeweler, or whatever, or the grocery store she'd grab a bag of these and throw them in her purse. She always had Peanut M&Ms and as the effects of Alzheimer's were starting to take effect, and we didn't even know it at this point, I could not get her to stop feeding them to the dog. And the dog is probably in here somewhere. The dog is almost 18 and has more energy than any of us. So, don't tell me-- please don't go feed your dog chocolate. But this dog is apparently an alien. Nothing is going to kill it. It is still around here somewhere. But, yeah, I just --it was Halloween, later that year, and you know, that's when you can buy the individual packages. So, I thought ooo I better grab some of those, mom will love those like, " mom look what I got." It was the little individual packages. And she went "What are those?" and my heart just sobbed. And how could she not know? And I said, " well try one." And she did, and she was like, "oh, these are good." So, you had to reframe it as, OK, that's really sad, mom doesn't remember she likes Peanut M&Ms. But look at the joy-- we got to see her joy of eating a peanut M&M for the first time, again.  You have to, you have to find new joys.

Melissa Wilkinson

Well, I love that. And Kimma just typed in reframing is so important. That seemed to be a really big go-to for you. That once you learned how to reframe things, the stress just kind of went off. Do you find yourself still using it and how do you do it?

 

Dayna Steele

I had to learn to do it with her because her very being and survival had become my job. Not so much physically, because I was fortunate enough to be able to pay to have her in independent living, then assisted living then memory care, that sort of thing, and then a private home. But I was responsible for all of that. So, I had to do whatever I could-- I wasn't reframing so much for me as I think I was reframing to make sure I stayed-- that everything stayed as stress free for her as I possibly could make it.  Because I swear to this day. She was still in there somewhere, and I could see it in the fear in her eyes of what has happened. You know, that was my mom's dirty little secret, she hated old people. She would see somebody in a wheelchair, or on a walker and she goes "well, if they just walk every once in a while, they'd be fine." Well, no Mom, they wouldn't. But. You know. And that was the other thing, that was another thing, she was like Jeff Gordon in the hallways. If somebody got her way --first, she wouldn't use a walker, and then she would carry the walker with her everywhere. And then she started using the walker. But if people got in her way, she would bump these people because she was still spry. She was still moving pretty fast. And I'm like, "Mom, you can't just bump somebody." She's like, "I didn't." I was like, "I saw you." And she'd just grin and go, "whoops." Ramming people in the hallways I was like, "stop."

Melissa Wilkinson

It's so amazing how different and what shifts and changes. So, I'm really curious about you now that you've had some time to kind of look back and reflect what would you have done differently, if anything?

 

Dayna Steele

Ooo, I ask that question all the time. I would have had --I don't know I'm pretty anal retentive. I'm pretty organized. When my husband's father died, I was so impressed that when Dr. Charlie died, he had taken care of everything. I mean, down to what flowers. So, all we had to do was just eat and drink and be merry and tell stories about Abuelos. And it was so less stressful. Finances. Everything was taken care of, the paperwork, everything. And I came home at that point in time and my mom and dad, like most people, pushed back. And it was like, you know, "no, I'm not trying to kill you off. What I'm telling you is this. If you love me, you will take care of this now." So, we got my name on all the bank accounts. We got my name on all the-- any sort of financial accounts. I knew passwords. I knew everything except for one question. If you become incapacitated, you can't live with me. Where do you want to live? And as this got worse and worse, she kept going "are we going to your house?" "Are we going to your house?" And then she would fight us. When I had to take her back to an assisted. We'd bring her over for dinner or whatever, she would fight us. And the guilt to this day is overwhelming.

Dayna Steele

But I had a multilevel, frank Lloyd Wright-ish kind of house. There was no way. I remember I was cooking dinner one night and I looked over and she started to go down the steps and she fell. And I to this day do not know how I got over to that side of the kitchen and the steps that fast. It was just three steps from the kitchen to the living room. But I caught her and cradled her head like Superwoman about an inch from the slate before she would have slammed down. I cushioned her. It's like I slid, I ran and I slid under her and cupped her. And I don't know why it didn't hurt me either. But that was the tremendous, tremendous guilt. Still to this day that we never talked about that because she would laugh and say, "I'm just going to stay with you." I'm like, "oh hell no, you're not." But it was always a joke, and we would laugh. And then she'd go, "and you're going to take care of the dog." And I'm like, "no, I'm not." That damn dog is still here somewhere.

 

Melissa Wilkinson

Well, I think that sentiment in fact, -- our last podcast, we had Natali Edmonds and she is a geropsychologist and there was a caregiver who asked this exact question. She's like, "I just put my mother into an assisted living and I feel so guilty." I just think that is so common. And her response was so beautiful. It was --well, if you had a friend who just put their mother in assisted living, what would you say to that person? What would you do, you know, to encourage them? To go, "oh, you're doing the right thing, you know you know that she's safer there." And so, she had this --she just basically answered your own question to create her own self compassion. And I think that, that is kind of where we have to come at because we can't be making any decisions for the what-ifs or even the look-backs. But we have to make decisions based on safety and what we are able to do as a caregiver.

Dayna Steele

Well, and also finances. I had to keep working because my mother did not have long term care insurance. She did not have a lot of savings. And I knew it wasn't going to last long because she was pretty healthy. I figured she was going to last for several years. And I had to be really-- I had to weigh things. And I had a good job, I made good money. I was a speaker. I had to travel a lot. My husband flew for NASA and then he was an aviation consultant. I couldn't leave her at home alone. I couldn't leave her at my house alone. And I couldn't afford-- so you have to weigh all these things. I have a comedian friend who quit everything, moved his mom in with him, and she lived with him for like eight years. And I mean, he slept with her. He bathed her. He took her to the bathroom. He did everything. And every once in a while, he would have to go out on the road and still do a gig. And he had a series of friends who would come and stay with her and do the same. But in his case, he couldn't afford to put her... You just do what you have to do. And I knew, with children and a husband and a job and the circumstances that I needed to keep working because we needed that income. And you also have to take care of yourself, caregivers forget that. It is OK to take care of you. You come first. Women are particularly bad about this. We take care of everything but ourselves first. You must in a relationship, in a caregiving situation in anything. You've got to take care of you first because if you don't take care of you, you can not sufficiently take care of everyone else. And we forget that, we so forget that.

Melissa Wilkinson

Well, this is a really good Segway... You had mentioned that you have some fears about having Alzheimer's. What are you doing to take care of you right now? And if that fear still there?
 

Dayna Steele

I read a lot. Research read, look up, people send me articles all the time. I am not a doctor. I am not prescribing anything. I am a big believer in vitamins. I constantly look for the things that Mom and I may have had in common. I stopped painting my fingernails. That's weird, but I stopped doing it because it's a lot of chemicals. I obviously have not given up on hair dye, but this is what I did to entertain myself during a pandemic. Sleep. My mother did not sleep. My mother was a worrier. I think stress has a lot to do with it. She would get up and not sleep between two and four in the morning, that's when you get a lot of your REM sleep. And their sleep studies have an awful lot to do. She strung high-end pearls and beads, which is a very repetitive-- it never really changes. So, she was not doing a whole lot to challenge her brain. She stopped reading. She stopped watching movies because early on she couldn't follow them.

 

Melissa Wilkinson

Right.

 

Dayna Steele

So, it's a whole combination of things. She ate --she used canned, you know, Campbell's Soup for everything? It was in everything, I think. I think canned goods. I think at some point when we finally have a breakthrough, it's going to be tied to something like that. She drank a canned diet Dr. Pepper, every morning. So, I look at all those things. So, I don't drink soft drinks. I don't paint my nails. I meditate, I try to meditate every day. I got to get better at that. I love to walk. She did walk a lot. I walk everywhere. But I'm a worrier. I'm a wake up at two a.m. and solve the world's problems. And I realized in the last couple of weeks I've been doing it again. As we're making some decisions about, you know, what's next after the pandemic, probably worrying about taking my mask off and getting near other human beings eventually. So, I'm back to my routine. I have a sheet spray. I have essential oils. I've read so much about create a routine for yourself, because one of the most important things you can do is give your brain the time to repair itself, and it does that during REM sleep. I put in earplugs now. I wear my earplugs and I try to --if I do wake up, I try to meditate myself back to sleep. I slept through the night for the first time in several weeks last night.

Melissa Wilkinson

 That's great.

 

Dayna Steele

And you have to do that. Yeah. I have to teach myself to do that because I think that's --and it's just keeping your brain active. I don't need to be doing a podcast. I don't need to write another book. I don't need to be on social media. I don't need to do any of these things. But they keep me active. They keep me-- every time I write a book, it's a whole new puzzle to put together. And so, I try --there's a great book called The Nun Study. Have you read that? You've got to go find it. I think it started in the 80s. I don't know, but it's a doctor has written --they wrote a book about these nuns have been in this controlled brain study for years. Because they basically live the same, eat the same, pray the same, work ethic the same. There's no alcohol, there's no drugs, there's no outside influences like that. And they've all donated their brains to science. So, each time a nun dies, they take her brain and they compare it to all the other nuns. And this study has been going on for years and years and years. And for example, there was a nun, I want to say she finally died at like 102 and her brain showed six of the seven symptoms, stages of Alzheimer's. Yet everything had moved to the one small side of her brain that was still active. The rest of it was dead. It was black. It had the tangles. It had whatever you want to call them now. Yeah, goosebumps. She started a water project in Kenya when she was like eighty-eight years old because it was something she always wanted to do. It kept her brain active. She kept active constantly, and she had to go find... I just, I was fascinated with this study. And so, I think you have to sleep. You have to be happy. You can't be stressed. And you have to find ways to get a good night's sleep, good days sleep, whenever you sleep, sleep. But, yes, I still worry. I couldn't find the word for apron the other day, probably because I haven't worn one in sixty-five years, and I'm sixty-one. I couldn't find the word for apron. I was talking to my mortgage broker and I was like, you know, that thing that housewives wear. Because he was like, "I'm just going to put you down as a housewife." But I was like," I will kill you. Do not do that." But that's another story. You know, when you sign papers, they still go " the husband" or you know, they put the husband's name and then they say, "and the housewife." I was like, "oh, bite me." We are so not doing that. But anyway, I was like, "you know, I'll go get my little I'll go get my little..." And he goes, "Are you OK?" No, it's like I can't think of the word. And my son goes, "Are you trying to say apron?" And I was like, "Yes, yes."  But for a moment there I was like, uh-oh, I don't know apron. I was like" okay it's because I don't wear one, that's probably why I don't know."

Melissa Wilkinson

Well now... Well yeah but for those listening, there's a big distinguishing marker here. When you can't think of a word that's normal. Most of us have times where we cannot think of a word. It's when...

 

Dayna Steele

But you freak out when you've had Alzheimer's in your life.

 

Melissa Wilkinson

I know. I know. I know.

 

Dayna Steele

It's an apron, that's what the damn word is.
 

Melissa Wilkinson

So, finding that measure of grace when we sometimes cannot remember things that are normal to forget. So, I love that you mentioned that you are constantly working on new projects. I want to hear a little bit more. I know you told me briefly before about your play. But how you're turning this book about your mom and all that you did on Facebook into a really interactive play.

Dayna Steele

When I lost my race for Congress, about two weeks after that, I went to New York and saw What the Constitution Means to Me. And not only is it an incredible play, which you can now watch on Amazon Prime and I highly recommend every woman watch it. I was fascinated with the way she staged it, and I immediately went back to my hotel room and started researching. Was this a true story? Was this her story? Was this true? Was this real? How did she do this? And it was. And it is.

 

Melissa Wilkinson

And what's the name of it?

 

Dayna Steele

What the Constitution Means to Me. And it's the story of her debating the Constitution in high school to raise money to go to college. And you would do these debates at like Lions clubs and, you know, stuff like that. It's just, it's an incredible show. Incredible, but I was fascinated with the staging. So, it's similar to that in that it's me on a small stage set with a young tall, black actor who's just phenomenal. He's fantastic. And it's been so --he's 23 and it's been so much fun working with him because he knew nothing about Alzheimer's. And like most actors, he's a waiter while we're waiting to do the show. But he said it's made me so much kinder and it's made me so much more patient when I wait on older people now. I don't get frustrated waiting for them to order. We were just getting ready to start table reads when the pandemic hit, but we decided to go on with the table reads because we still thought we would be putting it on in November of last year, which obviously we didn't. So, what we did is we zoomed and I recorded the first few table readings and I thought, you know what, we're going to release this. So, it's a 10-episode series on YouTube, free.  Me, the actor, and my director reading, doing the table read. And there's some, you know, repetitive things in there we need to fix. That's why you do a table read. You learn what needs to be fixed where the continuity is screwed up, all of that. But we also-- the last episode, the tenth episode is the three of us talking about what it was like reading it, and doing it, and how it helped me get over my fear. Because I don't feel like I'm an actress. I went to L.A. in 1990 to try acting for a living and discovered I couldn't act my way out of a box and came back to radio. But this is different. This is me, being me telling the story. And it's a love letter to caregivers that they're not alone. That you can cry; and you can laugh, and you can say the F word, and you can drink wine, and you can be mad at people, and you can be mad at the disease, and you can hate the person you're taking care of. That's even how we do intermission in the play, is based on a real-life thing that happened. My husband said, "are you going to go see your mom?" And I just said, "no, I just, I just had a meltdown. I don't like her. I'm tired of this. It's not fair. This-- I didn't plan for this. I plan for everything." Oh, I was just --and he just like put a glass of wine in my hand and said, "and that's why you have her in a nice place. You don't have to go."  "But if I don't go..."  So, I kind of have this meltdown on stage, and that's when the stage manager, this young black man, makes me leave the stage. He pours me a big glass of wine, shoos me, finally makes me leave, and the lights come up. And as people start to stand up, he says, "no, no, no, no, there's no such thing as intermission in Alzheimer's." And then he does a 10-minute monologue on why you have to take care of the caregiver. And he walks around pouring wine for people that, you know, we're getting up thinking they were going to intermission. Like, no, no, no, no, there's no intermission. This is where you come in. You know, we all have to take care of Dayna, and it's a really great moment where people go oh, OK. You know, because they don't think about taking care of the caregiver. So, we are trying to stage it in Houston, debuted in Houston, Texas in November. It all depends on, you know, we want people to be safe. We may stage it and film it. We may postpone it until Mother's Day of 2022. Right now, we're just kind of watching COVID and when we feel like it's safe to do something like that to gather, then we'll do it. So, I'm terrified of doing it. I'm terrified.

Melissa Wilkinson

Are you? You don't seem like having any fear like that. 

 

Dayna Steele

I can get on stage and talk to 2000 people about what's wrong with their business and what they need to be doing for success? But this is such a vulnerable space. When you watch the ninth episode of the series, it's the episode where she dies and I lose it and see, I'm tearing up now. I lose it and I'm probably going to lose it every night on stage until I get used to doing it, if I ever get used to doing it. But it made my costar cry and then my director started crying. So literally, all three of us are crying and we edited part of it, but we left a lot of it in-- or like where I said, I just I have to stop. I'll be back in a few minutes. You know, we ended the zoom and then we come back. Up until that point, I had really enjoyed doing it and then I lost it on the last one.

 

Melissa Wilkinson

But that's so important for people to see that because it is a part of the process.

Dayna Steele

You'll have to cry, just let it out. Mm-hmm. So, we also --the first half of the book is the Facebook posts that we found to be: enlightening, entertaining, funny, informative. And then the second half of the book is everything I wish I had known, written by experts: a living expert, a legal expert, a neurologist. And then the 25 questions I think every family should have the answers to, including that twenty-fifth one, where do you want to live? Which I didn't have. So, in the Zoom series, what we did is each episode is about, I guess it's about 15 or 20 minutes of us reading the script and going over notes. And then the second half is usually a 5- or 10-minute interview with an expert, just like we did in the book. And that's what we'll do at the end of every play. The play will be about an hour and a half long, and then at the end of the show, the lights will come up. There'll be three stools on stage. I'll be in one of them. The actor becomes the facilitator and the other two seats will be filled by someone like you. They'll be filled by someone from the Alzheimer's Association. It may be a neurologist; it may be another caregiver. And then we'll have a Q&A with the audience for probably about 30 minutes and then we'll sign books and drink more wine.

 

Melissa Wilkinson

Well, I can't wait for all of that to happen because I think these creative ways for us to reach the waiter, the actor, to educate and to bring them along on our journey. And the more people understand how, and exactly what caregivers are going through, it's so powerful. It's-- and I think that steps to breaking the stigma.
 

Dayna Steele

Yeah, and I wish I could tell you why things haven't changed, that's your original question from like an hour ago. Why have things not changed? Damn it, I don't know. You know, I used to say, "well maybe if the president gets it, that'll happen." Well, the president did get it. Ronald Reagan was running the country with the first stages of Alzheimer's, and people hit it and nobody did anything. You know, it's --I don't know. We need the research. One of the first things --I don't care what your politics are, one of the first things Trump did when he came into office was cut research to dementia and Alzheimer's, and it just drives me crazy. And caregivers, I'm working with a caregiver. This woman's been caregiving for her husband with M.S. since they were young. They had just gotten married and discovered he had M.S. and she's fighting for caregiver health care benefits and caregiver, you know, tax credits. And she's written a fantastic letter to Mark Kelly and President Biden. So, I'm trying to help her find ways to get this into the hands of Congress. You know, whether, it's the House of Representatives, or the Senate, or even in to Kamala and Biden. These are the things caregivers need. We need to be able to write off these things. We need health care, we need research, we need all these things. And it's just, you know, we've got so many things we have to fix around us, first being COVID. So, I don't know. I just don't know what it's going to take because it's not getting any better. It is getting worse. I know there's a lot of work being done on drugs. My brother-in-law is a neurologist. You'll see him in the first episode of --it's called The Woman in the Mirror on YouTube. And he works on a lot of drug studies. And we're close, but we're not there. And that's the problem.

 

Melissa Wilkinson

But finding the vaccine for COVID has actually shifted my perspective to give me some hope. It's possible. I read...

Dayna Steele

Anything is possible and look how fast we did the vaccine.

 

Melissa Wilkinson

Exactly. Well, I know that what you have put together in your book, I've so enjoyed reading through that. And in terms of how you're going to convey this and what you have already on YouTube will be such an encouragement to people. And I'll say to anyone listening, and we didn't talk about this, so oops, but ...

 

Dayna Steele

Oops, what were we supposed to do?

 

Melissa Wilkinson

Well, I was saying you so generously gave an e-copy of your book and yeah, there. So, anyone --we've got the link posted on Facebook and we'll post it with the podcast as well. Where you can get a hard copy to order a hard copy of the book, but also an e-copy is available for those that sign up for our virtual retreat for Houston. Dayna donated to those who participate in that free retreat and you can download her book. So, I'll have Kimma put the link up there for that. So, thank you for continuing to do that. That's what I didn't ask permission for.

 

Dayna Steele

Oh, you know, if it helps one person along the way, I give a lot of stuff away. I just, you know, I always tell people" just give it away." Eventually, somebody will come to pay for it.

Melissa Wilkinson

You know what, it does make a full circle, and so you have that heart. And I just want to thank you so much for offering your wisdom and your time today. We're going to close the live segment. So, if you're watching us live and next time you want to participate on Zoom, we actually take a few minutes where the folks have an opportunity to personally ask a question to our guest. So, you might want to consider that next time you'll sign up for our newsletter so you can be in on that exclusive opportunity. So, we'll say goodbye to our Facebook folks. Thank you so much for joining us.
 

Melissa Wilkinson

Thank you for joining us on this recording today for Caregiver Wellness Podcast, with our guest Dayna Steele. She's such an inspiration to me. I am so honored that she is in our community and she is such an advocate for information, research, and also the support of caregivers of Alzheimer's and other dementia. I hope that you'll find one of the links below and click to go and listen to her read her play based on her book. And I think that is such an excellent way to support this work. You can also sign up for our virtual retreat from Houston, which is online. If you go to https://www.caregiverwellnessretreat.com/ click on virtual retreats and you'll see live from Houston there, where when you sign up in the virtual goody bag is an e-book from Dayna. So, her gift-- and a way that you can return that thank you is sharing our retreat with other caregivers. And you can also support Dayna's work and check out her website and her link below as well.

 

Melissa Wilkinson

Her work is absolutely incredible and imperative, I think because she's using her voice in such a way that she has the ability to do that. When we have the privilege and when we have access to be able to share things like this, it's so important that we do. You can find her at https://www.therockbusiness.com/, and you can find her book. You can get an actual physical copy of it wherever books are sold. And it's called Surviving Alzheimer's with Friends, Facebook, and a really Big Glass of Wine.

 

Melissa Wilkinson

So, you can also find it on Amazon as well. Surviving Alzheimer's with Friends, Facebook, and a really Big Glass of Wine. So, thank you again for joining us. We would love your continued support. You can sign up for the newsletter and find out about these opportunities to have an exclusive audience. One of the things we talked about in-- when we turn the camera and the recording off was what gave her hope. And I was very inspired by this conversation. I think there is a lot of things out there that are still giving us hope. And one of the main things is to continue to believe in the inherent goodness of people. To not become jaded, to just continue to expect goodness. And that was a big encouragement to me today. I hope that you find it encouraging as well. And I look forward to spending time with you on future episodes. Thank you so much for joining us today.