Deep Dive on Alzheimer's (with Carlen Maddux)

Alzheimer's is one of the scariest words we know. But as we get older, it is so important to understand what the disease really means, and what we can do when someone we love—or even we ourselves—are facing an Alzheimer's disease diagnosis.
This week we sit with Carlen Maddux, an author and journalist who shares his knowledge and experience living with a partner diagnosed with Alzheimer's. Learn the stats on the disease, what it looks like, and how to take care of yourself and those around you who experience the effects of AD.

Thanks to our Amazing Guest:
Carlen Maddux: Website, Buy A Path Revealed on Amazon

Stuff We Talked About: What is Alzheimer's Disease? 

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Transcript

0:46

But I don't need to do intros. Carlen. Could you go into the story that you're about to say about your wife? Yeah. In 1997, my wife was 50. She had turned 50 just three weeks prior and she was diagnosed with early onset Alzheimer's disease. I was 52 and three children. One was in high school and two were in college. If I had heard of Alzheimer's at that stage in my life, I just do not remember it. It was I certainly learned a lot about it since then, but it just caught us by surprise. And when we got the news, our life didn't get turned upside down. It imploded before us. I had a business magazine, a regional business magazine here in the Tampa Bay, Florida market. And Martha had been in politics, had been on the St Petersburg City Council here in Florida in the mid eighties and the year before that. She was diagnosed with this. She was running for an open seat in the Florida state legislature. So she was very involved, very energetic, very outgoing personality, a more so than I. And so it was just it was just devastating. Devastating to me. Devastating The Martha. When we got home after getting the word from the doctor, Well, let me tell you a little bit about the way the doctor talked to us. We'd gone in for testing three weeks prior to getting the results. And we like that doctor. And he he was very empathetic and and we thought we were going to see him again. But when we went back, he had been called out on an emergency and a partner of his was there. And and he it could have been Mr. Spock on Star Trek. He was cold, He was cerebral. He was very distant and certainly didn't help us feel any better when we got the news. And he started getting into technicalities and I said, Just get us out of here. We don't need to know about that word. So we got home. We had a good long cry. And then the first thing Martha told me was this I do not want to tell a soul. I don't want to tell my parents. I don't want to tell our children. And I do not want to tell our friends now. I mean, there's a stigma, as you as, you know, attached to mental disabilities of almost any kind. And there certainly was in our mind with this thing called Alzheimer's or dementia, just as a side Alzheimer's and dementia is a broad category of which Alzheimer's is part of it happens to be the largest part of the category of dementia. So as we talked, Martha had said she did not want to talk to anybody, but there was one person she was willing to talk with and that was a retired minister who had married us back in the day. And Martha had been good friends well before we got married. And so she said, yeah, we can, we can we can tell Laci. And so I called Laci and he came over the next day and he was Laci was stunned when we told him. And he he just started crying. We were Martha and I were sitting on the couch and he was in a chair opposite us. And he just waved at me and asked to swap seats. And so he put his arms around Martha, and they had a good cry. And so after we got through, Laci said, Tony says, he said, you know, I have a good friend in Kentucky who is with the Sisters of Laura, sister Elaine, and she is the retreat director there. And I have sent a lot of friends and crisis up to see her and to talk with her. And they all seem to come back with something meaningful out of their time. I don't know what you would get if you do go, but I suspect it would be very meaningful and. Martha So, Martha, I did go up and meet with the sister elaine and that's sort of the star of the story. Brandon We can go in a lot of different directions here that you would like to, but that's, that's where we started. And this went on them for 17 years. So yeah. Yeah, I'm, I'm sure Grandpa has a lot to say about this, but my personal experience with Alzheimer's is my great grandmother, Grandpa's mother lived a really long time, so passed away maybe when I was 12 or 14 or something like that. And my entire knowing her, pretty much she suffered from Alzheimer's, so. Okay. Yeah. And then how did you how did you as a child, react to this man? I mean, as a I don't know, how did I react to Grandpa? Well, I think I think that. Can you hear me okay? Yeah. I think. That you. I remember you meeting with my mother, and, you know. I have trouble hearing hear. Just speak up. I. I recall you meeting with my mother in her bedroom, and you were having a nice conversation with her, and I. I think that you got along with her quite well. I don't remember any of the real details because it's, you know, it's been like, 12 years ago. Yeah, as maybe longer than that, I think. I think like as a younger kid, there is maybe a funny aspect to it, right? Because sort of having the same conversations over and over again, not understanding sort of the weight of what's going on. But she she was very sweet and very nice and I remember before her husband had passed, they made me like a like a Pikachu cake because I love Pokémon. So the very sweet in on that that she was like, Max, get the peak. It's you, you know, like I have fond memories. Yeah. Yeah. Well, I mean for for good While Martha was able to drive and she was able to talk still and able to see folks but there was, there was a decline. I mean, the worst thing that happened to Martha when we got the news was that this highly confident woman just lost her confidence completely. He just went to the floor and so I guess about two years after that, our sister in law named Kirk approached Martha about about getting into a watercolor painting class. And Martha had never done anything like that. She liked to tell. She liked being out on the water. She liked talking smack with friends and the like. But but she got into this watercolor painting and it just produced some incredible paintings. Very bright, very colorful, very contrasting. And to the point that her teacher at one point told me, said Carlen, I do not know where this is coming from. You cannot teach this kind of coloration that Martha is doing. And so there was just a number of paintings. I probably the I'm guessing 2 to 3 dozen paintings over the course. And this interest lasted for about for about two years. And then she began to fade on away from there and out of that. But I found out later that Martha's experience with painting is is not unlike a lot of others who have this disease with either music or art or dancing or the like, and that these things just really reengaged the person who's going through this. And so I would I would tell any of your friends here who are listening, who who are having to deal with this or may have to deal with something like this is to see it, to find that kind of activity where it's not necessarily a verbal activity, but where they can express themselves in some fashion or if they've played the piano 20 years ago, said they would sit down and play the piano again and that kind of thing. That would be very important. Um, they, in terms of what I was doing, I started reading about everything I could get my hands on and there was not a lot of material on our assignment in 1997. I, I considered 97 and earlier to be the Dark Ages as far as research and understanding this disease. And I mean, even even though it had been designated and discovered back in 100 years before back in the early 1900s, it still had not had a lot of research done for it. There were a couple of caregiver guidebooks out there that I read, but read a lot of other things. I was I was really intent on trying to trying to find a way out of this for us. And I was hoping that we could find a way out of it. Um, so going back to excuse me, going back to our time that I spent with this sister Elaine in Kentucky, she was just a she was a very she was intense but an intense and a very empathetic kind of way. And one of the things that she told me told us was you might want to check out the difference between being willful and being willing willfulness versus willingness. And I had no clue as to what she was talking about. I was a publisher, entrepreneur. Martha was into politics. And if there are any enterprises that are willful and stubborn and push it through kind of thing, that those are. And so it took me a long time to understand what she was talking about, just being open to being willing to go down this path and to go down that path and the like. The other thing, Brandon, that she mentioned was just she mentioned in passing was that you might want to check out the practice of meditation. And I never I'd never practice that. We were in a church and but the church didn't. That was not a practice in our church. So but she didn't get many references as to who to consider or to talk to on this. So when we got back, we called our friend Lacey, and he wanted to know how the meeting or our week's visit went and brought him up to date with that. And I asked him, I said I didn't expect him to have any answer for me. He just said, I asked him. I said, Leslie, do you know anything about meditation? And and he said, Well, I know a little bit says, No, I would recommend you check out a Benedictine marked by the name of Father John Maine. And he has a couple of books out, one called Word into Silence. And it would be worth your time, I think, to find out what his approach is, is about the simplest and the most authoritative. So we just we talked about that and we decided to do that. And so we began to meditate like 20 minutes in the morning and 20 minutes in the evening. I can't remember how long it took, Brandon, but after a while I began to feel and sense. Martha's anxiety go from up here to way down here. She was just beginning to feel some peace about not not our situation, but within herself. And I began to feel the same thing myself. And she was that was she was coherent enough at that point to be able to sort of maintain a meditation practice and understand well. What what we did was, well, at that point, yes. But what we did, we would sit side by side and hold hands and I would quietly repeat the word that we had decided to use so that I knew that she was hearing it just over and over again. And that was important not only at that time, Brandon, but in 2008, Martha needed to move into a memory care unit here in Saint Petersburg and so that would be about a decade after she had been diagnosed. And at that point, Martha was not able to talk, she was not able to walk, she wasn't able to take care of herself or feed herself. So she was pretty well dependent on somebody doing all that. I would go in and visit Martha of five or six days a week, and when I would go in, I would often find Martha curled up in a fetal position just and anxiety seemed to be exuding from her. And I. I would sit down beside her at that time, slip my hand into hers, and then just quietly repeat our word that we had selected. And it wasn't long before Martha's body began to unfold. And she began to either she fell asleep or she was looking out the window or she was looking at me. And I just felt a a peace presence developed sort of in in her room there that I just haven't felt before or since. And so that was just very important in terms of helping me and helping her, I think. And I think our children and helping them to get through this whole. So yeah, that was that, that was an important aspect of what we were doing. Yeah, well, wow. Yeah. No, no, I'm cool that this is a you asked so many questions that I have writing as we were talking, and you did it with a great gentleness that's happening. I mean, my back to being around them. Oh, that's cool. One just did this little Mr. Growth wrote like this that I can just tell it you're speaking from when you go from like the one you bought it willfulness and and and and willingness and just this to how tough it is to be dealing with something that's really outside of your outside is something that you you really have no control over and try your best to like a surrender to a certain extent. And it's just like a very, very, a very tough thing. And very highly, I always think. How how long were you guys married for? Lot were married. What was when she was diagnosed? We were married for 25 years until that point. She died in 2004, 18. And so that was 42 years that we were married. When she died, she died. She died. She went under the Memory Care Unit 2008. So she lived another six years, sort of in a vegetative kind of state. And in those last six years, and it just it was really hard to go in and just see my wife, who had been so exuberant, just be in this state of mind. The one of the things that was difficult for me during the when Martha was living at home at some point, probably three years after the diagnosis, the four years. And so I had to find a caregiver to come into the house during the day and so I got in touch with two or three women and they came in and Martha would just have nothing to do with them. And she just she didn't want to have a quote. She saw them as being a caregiver. And again, our system, our step forward, this cake and cake just had a very sensitive antenna to people's needs and so the the person that our family, a third person I got hold out by the name of Tricia Kirk said, well, let's do this. But Tricia and me go in and talk to and I'll call Martha and tell her I've got I want to come over and have lunch with bring over my friend Tricia. And and then so they came over for 2 to 3 hours and did lunch and played and had fun. And then they did that about a week later. Well, after the second visit, after the second visit, Tricia was now Martha's friend. And so we could bring Tricia and to care for Martha as her friend and and that we got on with that got over that obstacle. That was a real obstacle in terms of trying to get a caregiver, because I was I was still working full time and with the magazine and just needed to have somebody do that. There were probably four or five incidents during these 17 years that were, I would say, among the hardest that we went through, just to let you know, they were the one getting the news on this. The diagnosis that was that was really tough. Another one was about three years after the diagnosis, I had to take Martha's car keys away from her. We I was riding with her. She was driving. She ran through a stoplight and when we got home, I said, Martha, then you see that stoplight? And she said, What stoplight? And and so I, I, I had to take the car keys away. I had to let Martha know I was taking the car keys. She stamped. She just ran upstairs. I felt like I had betrayed Martha. And we got through that. But that that was a tough I mean, not No. Yeah, sorry. I'm just adding it up. Although they I mean, now it's it's. Yeah, that's. What is it like this. I understand. I have to I really hold a hard on like independence. I like to be very independent. I would be, you know, I don't like to be I don't like anybody to hold my hand at all. You know, I get burned by anybody. Think about trying to help me with my little shortcomings. So like I said, I can only imagine that sounds very tough. Like you've got a lot to learn. Yeah. Well, with Carlen, with regard to taking the car keys, I had a similar situation with my mother. My mother drove herself up to a McDonald's, apparently, and left her car there and hitchhiked home. And they didn't find her car for about two or three weeks. The police called and I felt so badly about taking the keys from her. But my sister said, You need to do that. And she was right. And my mother really never carried on. But I think I had not as traumatic experience as you've had with your with your wife. My mother had dementia. I don't know just what classification, but she did not deteriorate to the point of what you're describing with your wife. So it was a different situation. My mother just her memory was not too good and she would ask the same question over and over and over again, What did you do last night or whatever? But she seemed to had to still have an understanding of her situation. In fact, she asked me to come to town. I was living in a different city to help with her situation. She was writing notes on checks that were sent to her, whatever. She didn't really know what she was doing. And I was fortunate that I. I had an agency that sent out caregivers. I had around the clock caregivers and one of the ladies was terrific. She we're still friendly with her. We go to dinner with her once in a while, but she made things a lot easier for for us. The caregiver does. I mean, the greatest gift that I got through the 17 years when our two oldest children, David and Rachel, graduated from college and came back into this area, Tampa and Saint Pete, they came to me one day and said, Daddy, we want to give you a weekend a month off. I was kidding. We had Tricia, Karen for Martha during the day, our very caring for Martha at night and caring for her on the weekends. But they said, We want to give you a weekend a month off. And that was one of the best things that ever happened to me, because I could I could have confidence that Martha was going to be taken care of. I usually spent those weekends at a nearby monastery where I could go up in yellow to orange trees and go walking and and just venting and praying and doing whatever else I felt like I needed to do. And I would leave on a Friday afternoon and come back a little after noon on Sundays. And our kids really had to grow up pretty fast. And that stretched ways. And in our situation, because the roles were being reversed, they were no longer the children, they were being the sort of in a parental mode with Martha being in sort of a childlike mode. So yeah, it as, as you know, Grandpa, the every, every situation is different. I mean, there no two situations alike. I've read I've written a book called A Path Revealed. Now Hope, Love and Joy found us deep in a maze called Alzheimer's. Well, I don't expect people to and to have the exact same story as we do, but I'm finding, as I'm hearing from readers and from my blog on my website, that there are just connections being made there. They've got their own story, but they're identifying with some of the things that we're going through and how we had to deal with and how we had to address it. And so it's really, really important to share stories with each other. I after Martha's diagnosis in 97, I asked the doctor about a support group. I couldn't find a support group, and he said, Well, I know of one support group, but I wouldn't recommend that you get into it because the caregivers, their their spouses or their loved ones are all pretty well advanced and advanced stage with Alzheimer's. And I think it would depress you more than it would help you. So I didn't get into that and just I couldn't find anybody else sort of in a comparable stage as ours. So I was having to be a lone wolf a lot just in terms of my readings and topic and talking to one mentor after another and mentors began to sort of show up over time as it's not something not something I really went looking for. But that was very helpful during the course of these 17 years that starting with Lacey and then starting with Sister Laine and then going on to some others that occurred during these years. And Lacey is the pastor. Yeah, I'm extremely Lacey retired. How long how long did Martha and you guys know? No. Well, he he married us, so I'd known him for 25 years. Martha known him for two or three years before that. She was in Saint Pete. She grew up here in St Petersburg. I grew up in Tennessee. You might be able to tell on my accent the. But she had known Lacey two or three years before we got married. Then he baptized a couple of our kids as well. So we were very close with him and he was just a very impressive kind of guy, just a just had a lot a lot of character about. And that really, really drew me to him and I think really drew Martha to. Us now because, well, it's good to see. I wrote down some earlier about, Oh, yeah, it's just the shame of mental illness and of having some type of anything going on. You know, one of the the bad things about fame is like the isolates you get. You need like an accent to make you not same people, same about, you know, you got it. You got to like you have to let people know so they can be like, Hey, it's not that deep, but it's so hard because, you know, they also make you feel like the only person dealing with this problem so well. Yeah. So, I mean, Martha, Martha lost a handful of friends after she was diagnosed. They just did not because they wanted to be well, they just didn't understand. They didn't understand what to do or how to do it. And I didn't understand where they how to encourage them to do it. This was this was way past the time. They would have been of help to me. But one thing that I found that I was reading about someone else doing this, I mean, we would be out in public and Martha could say something embarrassing or do something embarrassing. And it was just sort of, what do you do? And just very awkward and what I what I read about. And I said, Boy, I wish I'd found this a lot sooner. This person had printed up a business cards size card and it said, My wife, thank you for thank you for your kindness. My wife has Alzheimer's and I appreciate your recognizing that and just not making a big issue of it or something on those terms. And he would just if he got into us, if he got into an embarrassing situation, he would just hand in that card behind his wife's back and and that would just sort of resolve the embarrassment of of the moment that What a bit. Because you didn't want to try I didn't want to try to tell people in front of Martha. Well, Martha has Alzheimer's and this is the way this is why she's acting the way she is and not being normal or anything. So that was that was a great idea that I discovered, but it was too late for too late for our situation for me to take advantage of the way. Carlen, if it's okay with me asking how did she finally pass? Was it? No, it's fine. Martha was in this memory care unit. This will be been This was on June 30th, 2014. I was out of town. All of our children were out of town at a at up in Monterey, up in North Carolina, outside of Asheville, at a place that Martha grown up going to. And so we were up there as a family, and I got a call from the nurse at the nursing home that one year that Martha's temperature was dropping and that just things were slowing down. And so we asked a good friend of ours, of Martha's, Jenny, to go out and be with Martha. And she did. And so she was with Martha as Martha just passed. It was very quiet and very fairly quickly. I got on the plane and got back home the next day, but we wouldn't have gone up to North Carolina if we expected this and thought this would be happening. But I'm glad that we were able to call on Martha's friend to to be there with her as she went on. And then I remember Brandon, that Martha was ultimately cremated. And but before that, I went into the place where the crematory where they were going to do that. And I was just sitting there with Martha and just holding her hand and just a very vivid scene. The this huge furnace right in front of us, knowing that Martha was going to be going through that. That was tough. Just but I think I said a quiet meditation for for us both there at that time and then just Martha on the forehead and and told her goodbye. I was with my mother the day she died, the evening of the day that I had spent time with her. And I had no idea that she was going to pass away. And before I left, she which was not characteristic of her, she grabbed a hold of my hand and just squeezed it. And that night she passed away. Her caregivers were with her. I was living about 160 miles away, and I came right back, but I had no idea that it was going to pass away that day. But but she had stopped eating normally for several months before that. Yeah. And just you you always regret not being at the side? I always regret not being at her side. But it is what it is. And I just had to deal with it and so, yeah. Well, just seem to me from my mother's action that she kind of knew that she was going to leave this reality. Yeah, you can tell that. Yeah, I've, I've read that about a lot of, well a lot of situations like that, but it just the passing is not easy. It just. You had mentioned that your wife showed a talent for painting up until things she got into a worse condition. And it's interesting I've you hear about that a lot. I'm sure you may have heard about Tony Bennett. He has Alzheimer's now and but he he can remember the music that he sings, but he can't remember, you know, normal events that are occurring in his life. Yeah, Well, one of the things that is very disturbing is when a person gets in the state, people think that the person, Martha's person, person, if you want to call it that, that was gone when they couldn't talk or couldn't walk, couldn't take care of themselves, that they no longer were a person. And and that that was one of the things that just it just really needs to be understood that there is I could sense at times that Martha was still very much with us. She just wasn't able to be with the same ways that she had been with us most of her life. And so that's it's important not to discount a person just because they're not able to do a lot of the normal things that that you and I do and that they and and that she had done much of her life. Well, it sounds from from your description of the situation that you and your wife had deteriorated to much more serious situation than my mother had ever deteriorated. Possibly my mother might have gotten that way had she lived longer, but she did live to be 91. But she in many ways still had control of her. Of her senses and faculties. Yeah, she really did. But how long did she go? How long do you go through this period? But I think about, oh, I'm going to say 8 to 10 years. Okay, let's say about 8 to 10 years. And it was her was just mostly not remembering things. She just would ask me, what did you do last night? And I'd say what I did. And a minute later she asked me the same and I'd have that question 20 or 30 times, you know, and try to answer it a different way to make it more interesting. But I don't think it mattered to her, you know? Yeah, well, I remember our daughter Rachel coming to me one time. This was fairly early on, and she was just very frustrated that she was not able to get Martha to do what she thought Martha needed to do. And and by that time, I had discovered I shared with Rachel. I said, Rachel, what you've got to do is you've now got to step. Martha is no longer in our world as we know it. You have got to step into her world and put yourself into her situation. And a lot of the things that she's saying do not make sense. You do not try. There's no need to try to correct her. No need to try to say you're wrong. This is what's right, Mommy. And but it took me a while to figure that out, just to just to stop trying to correct Martha. And and that that was a real relief once I realized just Martha did not have to be right. And you're looking at the guy right now that is trying to be a perfectionist most of his life and sort of a trait of self-righteousness in there. And so that that was hard for me to go through that kind of change. And and that's where identify with what Sister Elaine told me early on and just you need to learn to be willing calmly and don't be so willful about trying to impose your thoughts and your ideas on the situation with Martha, because it's going to all you got to do is frustrate her and frustrate yourself. And that's that was an important lesson for us to learn. I guess I'm kind of. Do you ever I know they're making a lot of advancements now on maybe. I still have a little I'm sorry. I think they're making a lot of advancements on trying to to prevent Alzheimer or dementia with certain drugs they're coming out with. But I don't know if it if it's a hereditary thing or whatever, you know. Alzheimer they whether there is the gene. But Martha Martha they they tested Martha for this genetic for this gene and she did not have it. So they remove as much advantage as they've had. They still have not are not coming up with a cure. I think maybe the latest bad that's come out is maybe delaying the onset of some of the symptoms but is not curing the situation. And so I just I remember early on in our odyssey with this thing reading in the newspaper about some breakthrough, and then I'd read down to the bottom of the story in the newspaper, and it was still the testing was still at the mouse stage and was not. It was not. And it went nowhere. I mean, they went through years of just research and testing that it was just not it's not coming up with anything. And still, as far as I'm concerned still have not come up with a solution or with an answer for the. Yeah. Let us say something about. Something your mom. No, it was just a nervous reaction. I put the mic next to my mouth. I know I do that. Well, now I was going to say something about the repeating of the words that you guys were doing, like a mantra and the meditation and. And. Yeah, um, I don't only vibe with that. I like it because it's so important yet very simple and very Yeah, something that everyone can do and it's so important you don't say it like it's like a, it seems like a, like a golden nugget, you know, you're like right there whole time, like a dream for a second. And it is pretty cool to have it. And yeah. Well, this Father, John Main, he as I said, he was a Benedictine mark and his mission was to, to get meditation outside the monastic walls, to have a system that for folks who had careers and were busy and had families that they could incorporate and work that into their lifestyle rather than just having to say, well, I'm going to become a monk or I'm going to become a nun. And and, and that's not the way I know how to do that kind of thing. So that's that's what attracted me to it with my if you know anything about publishing there, just deadline after deadline after deadline. And and so this was just very helpful to me as as we were getting hold of this whole situation. I had something else on my mind, but it's escaped me to come back to and. There's no biggie. I can talk for days. I don't matter what I, I, I think that I, I was, I worked as a, um, uh, a care provider, a health care health aide. I've done it for about eight years. Nine years? Wow. So I've been kind of I'm pretty familiar with, with people in and dealing with some illness that come forth are dealing with it is coping with life in general. The ups and downs of it. Um, and it's, it's um, I really, really learned a lot about the people dealing with it. Like, people like, um, like there needs to be a group for people that have to have to live with someone with Alzheimer's. Ah, had to take care of someone so personally because it is, it really, really hits your core of like and I'm sure it makes you feel insane sometimes and you feel guilty about being being, like, upset and angry about someone you love and, you know, like I, I can. Yeah, I did. I remember it being in people's rooms and it seemed like the the, the problem with people going like, oh, you know, you're you're upset. You're upset me so much. I was like to say something, but the people here would judge me. Um, yeah, I mean, I just, it, I, I just, I did. I mean, I had. I had to learn to forgive myself. I had to learn to forgive Martha for getting this thing. I also had gone through by forgiving. I thought I'm done by just being released, getting released from some of these deep emotional issues that were just not helpful at all. Very negative. I just had to had to go through the forgiveness process with Martha's parents. And in terms of the way they sort of brought her up, nothing abusive as far as physical, but there was some verbal abuse growing up and then thinking. So they're just a lot of a lot of just a whole range of issues that you that I never knew I was having to deal. With once I got to because I want to go into this this forgiveness thing. As you say it, though, I mean, I know it it's hard, right? Like in the you talk to the people do were you able to talk to Martha's parent? Does the forgiveness would you go into for her as young folks? I guess I would like to learn more about forgiveness because you seem to talk about it like it seems very easy, but it doesn't seem very ah, how did you get there. How do you get to a point where you're at it terms? I, I unfortunately, when I began to realize this, Martha's parents had already passed and so I was just having to go this kind of forgiveness within my own heart and space. I mean, I've come out of Christian tradition, which is not knocking anybody else's tradition. But that was that's one of the basic messages that I had to learn how to do coming out of that. And just some of the mentors that I had that were very helpful to me in terms of how to go through this kind of process internally rather than just holding it all inside, just going up, going up to the monasteries on the weekend, although once one weekend a month, as I mentioned to you, it was very helpful because just to be able to go up there and vent and just yell at the Irish trees, I mean, they didn't talk back to me. So that was good. And so, yeah, that there's not a formula for this at all. It's just but it's important to to get there and to get through that to get through that kind of process. And I had to go through the same kind of thing with, with my father, particularly that it just I just I just realized, began to realize I had issues with him growing up that I had not recognized or and not paid attention to. And again, but he had already passed at that point. So I guess what I'm saying is I've learned that I could still forgive, even though they were not one on this earth. So that was important for me to understand that. Forgiveness is for yourself and it's going to take time and. But does one of the things that I learned, people talk to me about our journey and and I don't I don't talk about what we went through as our journey, the word journey. I'm a wordsmith. I've been in the editing and publishing and writing and stuff, and the word journey just seems to take and to plan to me identify what we went through as being an odyssey and the classical sense of the Odyssey. You wake up one day in a foreign land, you're lost, you're confused, you're hurt, and you really want to you want to get back home and you'll do anything to get home. And I just discovered that when you do get home, that is, if you don't get home, you're just not the same person as you were when you left. And that home is not the same place. And that was an important for me to understand that as we got through, I just as the side just your audience may not understand the magnitude of Alzheimer's, just let me. Just lay this out to you. Some the the latest figures that I've seen are that in this country there's something like 5 to 6 million people who are diagnosed with Alzheimer's at one stage or another, and they're probably a lot more, but they just don't go to the doctor to get that kind of diagnosis. And then when you couple of family caregivers like Barton or myself, they're there are 20 to 25 million people who are having to live through the issue of Alzheimer's that you say, well, okay, that's 20 to 25 million. That would be if Alzheimer's were a state, that would the fourth largest state in this country behind California, Texas and New York. Well, it's the fifth largest, but behind Florida as well. That's a lot of people being impacted by this disease. Excuse me. I don't know what's happening to me here, but you're talking about something. Remember reading something, Harlan, That was like, I think was 50% of Americans at the age of 85. I think it was had some sort of dementia diagnosis. That's correct. When it hit age aged 85 and and what they call early onset Alzheimer's is when you're diagnosed before age 65. And then I forget what the ratios are at age 75 and then all up to 85 and the like. But it's just a real impact, not just with the one getting the disease, but on the folks who are just having to live through the volatility and the extreme changes and have someone I was able I was fortunate to be able to get a caregiver for Martha at home. How someone who's not so fortunate and is having to deal with is on a 24 seven basis. I don't know how they do it and unfortunately I don't know what the exact statistics are, Brandon, But oftentimes the one giving the care will die before their loved one with the with the disease. And that that is just that's rough all the way around and and I attribute that to the stress that's generated with just having to go through this. The stress is just immeasurable. And that's one of the things that the that the meditation really helped me with. It was just de-stressing. And it's just really important to to de-stress. And with this kind of crisis or really any kind of crisis that we're going through, I mean, the the book that I wrote is not a caregiver's guidebook. It's called A Path Revealed. It's on Amazon or primarily Amazon. You can find it there. The book that I wrote is not a caregiver's guidebook. It Alzheimer's is not the focus. Alzheimer's is the context. The focus is the Odyssey or the journey that we went through, a sort of a spiritual odyssey that we went through in terms of just how learning how to deal with a crisis like this was. I've had enough feedback from friends and folks that that is not their story, but they are able they identify with this with our story and that it it really helps them in some way. And I don't know totally how it helps them, but it seems it seems to really help them. I do. I do have a blog, Brandon, on my website it's WWW dot carlen Maddux dot com Carlen Maddux dot com. And there's a I have a blog that a lot of put posts up on and I interview other people like you're interviewing me. I interview folks who are having to deal with this you have whether the what they go through and their stories are pretty profound and the like if one is interested in checking that out. And everything will be linked in the show notes, Carlen. As far as links and where they can buy the book and all that kind of stuff. Okay. All right. In your in your talks with these other people, I'm curious like, what is the the biggest thing that you've learned or maybe that's helped you with your own sort of journey and trauma? Well, I would put it this way. Pretty much every one of us having to go through something like this or having to go back and draw on a lesson that I learned and I presume they learned back in around the first grade. And you remember Stop, look, listen, just stop what you're doing pay attention to what your wife is trying to tell you or trying to or needing and listen and just learning it. I have not been a tentative listener much of my life that was just a very important lesson that I've had to learn. And a lot of other people that I've talked with have had to learn as they're dealing with this situation. Because in normal human conversations, you're talking I'm talking we get we're we're a back and forth. We think we're listening, but we're not listening and and whatever else. But it just really has to stop. I really had to stop and pay attention and and then try to make some decision about what was needed or what Martha wanted to do or the like. And and it's just not it not, not an easy thing to do. Does that resonate with you, Grampa? Absolutely. Absolutely. Yeah. I think it you know, I think when you're young, you you're more like, you know, you're more into your own situation. And I think maturity helps you to have more. I guess it's compassion for other people and what their thoughts are. Yeah, I think that that's part of part of maturity. But like I know I do some engineering of audio and like now I've got a lot of knobs and buttons and everything and sometimes I can't remember which button does what and I walked in the other in the room to get myself a drink and I forgot about coming back in here. So I don't know why, but, you know, I wonder, you know, I think with age we all lose. Maybe not everyone, but. But I know that I've lost a little sharpness in my memory, I guess. What kind of say look. And I try to remember somebody's name and it just it come up later after I've seen the person. They're long gone. Oh that's, that's, that's her name or his name. But yeah, it, it just, it because. You guys get tested for this. Jean, you said you were saying that there was a test or something that your wife did. Have you done it yourself? No, I did not get tested and I've children have not gotten tested and there's a it's it's a double edged sword, Brandon. If they're healthy and they find, oh, I've got the gene, then suddenly this sense of glue with the sense of fear begins to descend on you. And so each person just has to make up their mind as to whether they want to go through that kind of testing while they're healthy and and the like. And our children are showing no signs of it at this point of the their range from 42 up to 47, the 42 and 45 and 47. And what what are those signs that you're talking about? Well, in terms of well, Martha, the year before that, she was diagnosed, she was running for an open seat in the Florida state legislature. I told you she was involved in politics. She was this was the biggest example that I remember of she was at a at an event that was the most important event in this whole campaign with three other the three other people who were running for the seat. And I had seen Martha in those public settings many times before, and she handled the questions just fine. And she then she was very direct and she was if empathy was required, she was empathetic. But in this day, this would have been in July of 1996. On this day, Martha had asked every question to be repeated. And then when she gave a response, a responses were off about 10 to 15 degrees. But it just didn't quite make sense. And we got home and I said, Martha, what was going on up there? And she said, What are you talking about? I thought everything went just fine. And I, I worked for our local newspaper here and found out later I hadn't gone to all the meetings that Martha was speaking at, but talking to some of the reporters who were who were covering that race, I found this out years later. They were coming back in and saying, What's the deal with Martha maddox? They just it's just Martha wasn't making total sense on things. And this. So this would be a year in advance of of the diagnosis. And it took us a while to get Martha and to get a diagnosis. So it was in September of 96 that Martha lost this race by 20 votes and that disturbed her a lot. And me too. But in hindsight, I'm glad that she did lose. But from from that time until July of 97, we couldn't get Martha in to see the doctor. Finally, she went in to see the doctor in July, and she went in by herself to go through the testing and whatever. And so I came home and I said, How how did things go? Martha said, Well, the doctor was just taking too long, so I left. I said, Oh, well, yeah. And so we got back in in early September for the testing and then heard three weeks later the results from that testing. I went, I went in one more time just to make sure we stayed there and go through the testing and the test, that the testing had had different kinds of things they were testing for. But what I would say, ask Martha, who is the president of the United States, and being political, you would think she would know exactly who the president was, but she was having to him and how and couldn't couldn't pull up the person's name. Asking you to subtract started 100 and subtract by seven and go down as far as you can. 193 86. So 59 and go on down like, like that. And she wasn't able to do that. And so there were some she, she wasn't passing those tests real well. Yeah. Yeah. I, I guess there's questions for Grandpa and Carlen, but like if you could go back to that time, like before these diagnoses or having dealt with all this stuff, like what advice would you give to your younger self. That it's interesting, I have written two or three posts of what would I add? I'm 77 now and I'm working on one now. What would I at 77 tell myself that 47 Sure, I haven't gotten real far on that, but and I did it a different ages. I would tell myself now to take time and you're working so hard and you're trying to keep this magazine alive. Stop and just whenever you start feeling stressed, just take some deep breaths. Go take a walk, just get your mind recollected spend. Somehow you got to work out spending more time with your children on the weekends, particularly nights. They spend more time to take Martha out on dates more frequently. In other words, if you were talking to religious terms, Brandon, take a Sabbath, take a break. Just and and if you if you if you haven't learned about meditation by that age in your life, Carlen, learn about it. But it was pretty foreign when I was growing up and where I grew up in Tennessee, and nobody ever heard of meditation but it's just very important to learn to relax. And when things get really tense, when when fear begins to seep into you, it's just really important to back away from those things and give yourself space. And I. So those are those are some of the things. That I confer with you, Carlen. And I would also say, based partly what you said before, stop, look and listen to be a good listener, to learn to listen and really listen to what someone else is saying. If you care about about them. Absolutely not trying to don't try to correct them or just write, hear what they're saying. And that's what we all think. We know that. You know, that's no art. We're all individuals and we all think that we know, you know, what's what. But other people have good ideas, too. So it sounds like this really? Well, one, it sounds like you're very career oriented, right? I was. I'm retired at this point. Yeah, yeah, yeah. Grandpop Grandpa was as well. And it sounds like maybe this shifted your priorities or maybe gave you more clarity on, like, what is actually important in life. I think that might be a good lesson that. That, that, that would be an excellent lesson. But as we all know that that is a lot easier to say than do. Yeah. Because it's it's almost like I didn't know I need this stuff until I got hit between the eyes by a bat and it just boom. And and that that brought me to a screeching, screeching halt. I mean, I had to continue with the publishing business because was our livelihood. I had to keep making bringing in some money, and that was important. Otherwise I would be adding even more stress. But yes. You forget what what's important to you in life. I've had some problems with my internet and TV and and wi fi service. And yesterday everything went out totally, couldn't make a phone call, couldn't watch TV, couldn't do the Internet or anything. And we live in that world now. And when you when it's all taken away, like, really, you're really baffled by it all. My wife started reading a book, which she hasn't done for a while, but fortunately it came back on. Well, maybe, maybe karma is out there telling us something, Barton, that just to be quiet and still there for a while. Yeah, well. Disconnect. From the world. The creator's mind is always running the show. Yeah. So that's. That's our story. And I don't know what else we need to cover here. I mean, there's a lot but that that's. We only have a few minutes left and we always do last thoughts on the show. So maybe that could be a good way to sort of wrap things up, unless you had anything else you wanted to tackle. Before we do that. Well, I want one of the things that I did with our children. I began to keep a journal almost from the beginning, not because of spiritual reasons, but because I had so much information coming at me from so many different angles. I just I had to just write it down and get it down so I could refer back to it. And I well, after after a decade, when Martha moved into the nursing home, I stopped writing, but I had 14 volumes of this journal. But what I would do is whenever it felt like it was something important for the children to know, I would make copies of those pages and just mail to them. They were still in college and my daughter here, I'll just give her a copy of it that really helped them up with where my head was just in terms of communicating with them, because it's really important that I was not in this by myself the children were the my besides Martha, but the children were my first order of business and they needed to know where I was, my head was what I was thinking, what we were trying, where we were going to go and the like and so I would just tell someone who's in this kind of a situation to make sure that you're communicating as clearly as you know how to your loved ones around you as to what's going on. Because I've I've read about enough situations where that is not happening and it causes all kinds of grief and stress within within that within that whole scene with that within that whole scene. So that that's that's what comes to mind. And here at the last, I think. And would you say that loved one's family and such is that the most important thing coming out of this experience? I would say the family is the most important thing. I would tell you that out of out of my religious heritage that I'm learning what faith is. And I thought I knew what faith is, but I didn't. Learning how to trust something that is beyond me. And then I had enough situations that that seemed to help me get through that. So the family and trusting my God to help us get through, which is really important. Yeah. Beautiful. Thank you. What about youth finance? What do you think is right now? But it is what it is the bank forgiveness lesson of the 18 that you where is that? That you and I, I it's the first day listening and just hearing. I think that I love this show because it is doing exactly what I want, which is letting people hear these stories and they get affected by my, you know, like how I have to do it. I ultimately want people to treat people that have any type of illness with the same respect then like everyone deserves. And I think a good way to do that is by letting people that have been affected by it or live their life be able to speak and have a platform for it. So who knows? The bank could also plan for being out here everyday. Do so. That's my words of my final words. And I. Thank you. Grandpa. My my shallowness. I like your hair growing back. Or lack thereof. You talking to me? Is that a change? Yeah. I did get something out of your program and many things that you said I related to and the idea of. Stop, look and listen. Yeah. It's an important you know, you forget that. But that's what we were taught as children and very enjoyable listening to you. Thank you. Thank you. And for me, Carlen. Well, I think we plan I think this might be the longest time period in the sense of planning of an episode to actually having it come to fruition. I'm very happy that we made this happen after so long because it was a really beautiful episode, okay? And I'm just really grateful that it made me very emotional, um, hearing this story. So and I think it can really help people if you could tell everybody and it will be in the show notes where to find your book one more time, where to find all of your your Tiktoks I'm sure that you have all that kind of stuff. I'm I'm not a big social media kind of guy. The book is it's it could be digital or hard copy on Amazon and you can Google some other online bookstores and we'll find it there. That's that's the main place to go for that. Again, my blog is is and it's on my website at Carlen Maddux, C-A-R-L-E-N M-A-D-D-U-X dot com. and people misspell and spell my name because people have misspelled my name a lot. I've been called Carleen and Caroline and Caroline Darling and whatever else. That's what I have to have to spell the names of the people can find. Find it. Awesome. CarlenMaddux.com thank you so much for coming on, really. And happy holidays, everybody. Happy holiday. Yeah. Final episode of the year 2022. Okay. Say that. Merry Christmas, love. Love you guys. Yeah, yeah. Have a happy. I got to. Have a good part.