Caring Through Chaos: A Journey with Frontotemporal Dementia

“I was in therapy, that was a lifeline.” - Allyson Schrier

This is a powerful one! Natalie and JJ sit down with Allyson Schrier as she opens up about her deeply personal and emotional journey caring for her husband, who was diagnosed with Frontotemporal Dementia (FTD).

Allison candidly shares the early signs of FTD, the heartbreaking misdiagnosis, and the uphill battle of navigating a complex healthcare system. From the shifting family dynamics to the emotional weight of caregiving, this conversation pulls back the curtain on what it really means to care for a loved one with dementia.

🌼 Key Takeaways:

• Recognizing early behavioral changes in FTD
• Coping with misdiagnosis and delayed answers
• The emotional toll and resilience required of caregivers
• The importance of self-care and community support
• How Zinnia TV is transforming dementia care through thoughtful, therapeutic content
  
  

About Allyson:

Allyson Schrier, co-founder and President of ZinniaTV was a caregiver for her husband with dementia, who turned that experience into a career focused on helping both people with dementia and those who care for them. Allyson became a dementia educator teaching both family and professional caregivers about best practices around supporting people with dementia. Following that, Allyson helped launch, then managed an education program at the University of Washington to equip primary and allied healthcare providers to better diagnose and support patients living with dementia. Allyson was honored to be a recipient of a 2020 Maude’s Awards for Innovation in Alzheimer’s Care, and was named Visionary Caregiver of 2020 by caregiving.com. She sits on the Health and Medical subcommittee of the Washington State Dementia Action Collaborative, facilitates support groups for spouses of people with dementia, and lectures on topics about dementia caregiving.

Social Media:

Instagram: Al.lyson80 

Instagram: zinnia_tv

LinkedIn:  https://www.linkedin.com/in/avschrier/

Website: www.zinniatv.com

Allison’s story offers both inspiration and practical wisdom for professionals, family members and friends alike

💡 Hit subscribe to hear more raw, real stories from the caregiving frontlines.

#CaregiverSupport #FrontotemporalDementia #FTD #DementiaAwareness #ConfessionsOfACaregiver #ZinniaTV #CaregivingJourney #PodcastForCaregivers

Transcript

0:00

Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now, let's jump right in to today's guest confession. Hey, Jay. Why hello, Natalie. Bright-eyed and bushy-tailed. my gosh, I am so excited because do you know where we're at? No, we're at we have no clue. We're like we don't know where we're at. We are at the PBS. I'm still going to call it Appalachia. it's not correct and we are going to get all kinds of like unfan mail because it is af... Unfan mail. They're unfanning us. It is I will wave into these people on the escalator. is the is Appalachia PBS Appalachia. We're going to put out a survey to say is it Appalachia or is it Appalachia? And so I'll tell you where we're from Tennessee and so there's the Museum of Appalachia and then the Appalachian Mountains. I use it interchangeably so this is not what we're here to talk about this. The con and pecan you're exactly right. Tomato tomato. We should talk about caregiving today. All this is so much fun, I'm excited. I am too because we have a fantastic guest. I've already practiced her last night. Look at me. I'm already on a roll today. We, well, people are like PBS what? We're in PBS Appalachia. And in my mind, it is Appalachia, isn't it? This is our actually our first episode in the studio with a guest here in the new studio and we are super And we're in the hard rock Bristol. That's what makes it even more fun. they have they have allowed us to be broadcast in the hotel. So Lord help us. Let's let's jump in. OK, we have an amazing guest Allison and I'd love for you to tell everybody about. to give you just a little teaser because Allison is amazing. Yes, I'm going to. I'm going to read you her brief bio that I have prepared. Are you ready? I'm I'm waiting. I'm sitting here like I'm waiting. I'm gonna tell you how wonderful you are, are you ready? So today we have Allison Tryert with us. her journey, what I found is that it's not unfamiliar to probably most of our caregivers now. Her family spent six years searching for an answer to the symptoms that her husband, Evan, had. And after those six years, he was finally diagnosed with FTD. at the age of 47. And they had two sons at that time, they were 12 and 15. Allison and her family cared at home for Evan, for two years. And afterwards he went through, he was at five different communities as the disease progressed. All this time, Allison, it seems like you were seeing something of your own, those experiences led you to something that was. much bigger and that's where you are today which I know we're definitely going to talk about because we're excited for you to share what you learned during all of this and also what they can learn from you. So we're excited to have you here today. you. first guest. Thank you so much. happy to be here. Right awesome. So I always like to start off by saying tell me we're gonna we're gonna start from the beginning. Okay, we want to hear about your story and so we're gonna start from the beginning which is of course you were born and you're gonna skip to the skip to you know skip to the you know tell us a little bit about where you're from right so walk us through you know where you're from how you and your husband met all that kind of good stuff. Alrighty. Well, so I was born a long, long time ago. I'm galaxy far, far away. Yeah, I'm an East Coast gal myself. I was born in New Rochelle, New York. And my husband was born in Providence, Rhode Island. He's a younger guy. I was a cradle robber. He's five years younger than I am. I respect that. Yeah, like that in a woman. So we met out here. Well, out here. We met on the West Coast. gosh, we had one of those sort of fairy tale kind of romances. mean, I... was 35 when I got married and I maintain that it took me that long to find a guy that I didn't want to change. I just wanted him to stay exactly, he was like the only guy I'd met who I, there was not one thing that I thought, gosh, if only this was different. I just adored him and he was sweet and generous and kind and loving and we were drawn together by love of the outdoors, that's why we both moved to the Seattle area. So yeah, courtship was all about hiking and kayaking and skiing and mountain biking and doing all of the things that we love to do. Oh you're like super active. Super, super active. I love that. That's really cool. OK, so you guys, you're 35. You guys get married and decide to have kids. And so it's kind of like, and then what happens? Tell us about life. Like, kind of walk us through life as it's happening. know what I mean? Yeah, sure. So life at that time was pretty, I thought it was perfect because we we lived in a beautiful house. had two boys, two little guys, lived in a house that I just really adored. And the house came with a dog who was the same color as the carpets. And I thought, man, I just don't think it gets better than my gosh, that's terribly convenient from a hair standpoint. Tell me how what you've got two sons. What's there? What's what's the age difference? Two sons, so they're two and a half years apart from each other. I love that. I love that we're all two years apart. The sisters and I are all two years apart. that's so nice. My sister and I are 11 months apart. Okay, then your Irish there. What is the Irish twins? that. That is that the all important question that we have to ask you, Allison. What is the birth order? So are you? Where are you? Yeah. Number two. so you're two or four. So you're technically a middle child, which is clearly why you align with me. We're always been yellow mustard. We're just used to it. So OK, so you have the boys and life is going good. Now tell me what are you and your husband do professionally at the time? Like kind of like give me a little paint a picture so that people because right now you're super outdoorsy. You've got two great boys and what do you guys do professionally? Yeah, so my husband was a software engineer. He worked at Microsoft. He went there straight out of college. And I also worked in the tech industry. So we met through friends who connected us through the software world. And I left my job to be a full-time mom, which was something that I didn't think I had in me, but I did. I really liked it. no kidding. I love that. And it's great that you were able to do that. You know what I mean? Like not everybody's able to do that. And if that's something that you want, that's a priority. Let me ask you this, because we didn't talk as much about like your childhood, which is totally fine. Had you had any bouts of care before ultimately your husband getting diagnosed and problems starting? Had you helped with caregiving for, you know, did parents come into play at that point? or anyone like that. Excuse me. I had no experience as a caregiver, if that's what you're asking. Yes. You know, when I was 16, my grandmother moved in with us, but she was pretty self-sufficient. so I, aside from being forced to babysit my younger sister from time to time. that's good Yes, it does. You know how those younger sisters are. Exactly. Yeah. So I had no experience aside from then being a mom, right, and doing all of the things that came with being a mom. Now, I will say that my older son was diagnosed in first grade as having Asperger's. OK. OK. And so he was kind of a he was he was a kid who required a gentle touch. And so it required early on that I figure out like, wow, How do you be incredibly patient with a person who is difficult to be with? And how do you avoid trying to be overly logical with a creature that's incapable of logic? And so I think that some of the experiences that I had caring for a special needs child absolutely set up my temperament, I think. don't want to have there at all say that there are equivalencies between caring for a high needs child and caring for a person with dementia. But there are temperamental requirements that either make it a more difficult or an easier thing for you to kind of hang on to. And so I think that having that experience was really beneficial. You know, I will say this though, in the eyes of like as people are defining who caregivers are, which is this huge broad stroke. If you think about it, you really were a caregiver in that sense. You were a mom and a caregiver and even I appreciate you talking about like temperamental in the sense of really helping you to hone in on patients. And honestly, it's more of approach that is different. Like I'm going to approach this individual differently, regardless of it was your husband. you know your son, your loved one. It didn't matter. so you, because you also if he had if he was on the spectrum, you also had to manage navigating schools. You had to navigate appointments. You had to navigate. And so I think that's why they talk about parents of children who have differing abilities or significant illnesses and things like that. Even though their parents, they also really code. they co-labeled that with caregiving because you're doing so much more typically than a traditional, your traditional parenting responsibilities. It's more would say that's. Yeah. Yeah. So that really helped. Go ahead, Jay. Yeah. So. I was intrigued when I read the information because I saw that it took six years to get to what it looked like, six years to really get to what I call an answer. And I know with our mom, it took four of kind of chasing. that, tell us about where it kind of started to get to an answer. Because I saw like, okay, were doctor's appointments, special. did you first start? Where did you first start seeing things? Yeah. You know, I can... Of course, like everybody who ultimately has somebody with brain changes, you can go way back and say, my gosh, I think that that was actually the dementia starting to brew. it goes all the way back to my pregnancy with my second child. with my first child, my husband was incredibly present. So he was the guy who came to every single one of my doctor's appointments. He watched what I ate. He prepared foods for me. He gave up drinking in solidarity, right? So he wanted to be completely like fully on board the whole time. When I was pregnant with my second son and I suggested that my like, Hey, guess what? We have our first doctor's appointment. He was like, we? And I said, yeah. And he said, I don't need to do that. I've already done that. okay. That's interesting. then as far as the drinking thing goes, he was like, I don't see why we should both need to suffer. So already I thought, that's Like, what is that? Because he's usually, my sense of him has always been somebody who is just over the top, kind and generous and thoughtful. And he's starting to kind of pull back a little bit and starting to be sort of more interested in what he needs than what I need. that was big. And so that is the trajectory that we were on then for a long time where things kept going down that path. He would make decisions that were like big family decisions. Like, I'm going to go to graduate school and quit my job at Microsoft. like, wow, some people think the wife would be a part of that conversation. So wait, let me ask you real quick, because I'm a total interrupting cow. How old how old were you guys at that time? How old was he when you first started seeing that behavior change? on Eli if I was, so he was like 32. my gosh, he was young. He was young. Yeah. Wow. Which is why, right? So then as time goes on, so here you are, you're a young mom, you've got these two little kids, and you start thinking like, okay, so maybe this is just the way marriage goes. Like, is it that one person starts to become kind of distant? Is it that one person seems to suddenly be spending, being less invested in the relationship? And so I didn't know whether there was a... problem with the relationship or is the problem with him or have I done something that has caused him to respond to me and to the kids in this way? But it was slow, right? So it started slowly, like over time. Now what happened for him is that, as I mentioned, he decided to go to graduate school. He wound up being unable to complete that program. he just couldn't stay focused. And so when he was... when he failed in the completion of that program and he had to drop out, that's when he was like, wow, I think there might be something wrong with me. And so that was when we started looking in earnest for what could be causing the changes that are making it harder for him to be himself in the world. And that led us, that was the six year path to a diagnosis. So you started, I mean, we're gonna take a break here in just a sec, but you started, you noticed with the pregnancy of your second son that you started to see behavior changes and things that are just a little off. And I really appreciate you sharing about the fact that you're like, it me? Have I done something wrong? Because that's typically what we do, especially as women, we're like, did I something wrong? Have I not done this or? And we doubt ourselves and then he, I appreciate you saying, hey, then he all of a sudden says, hey, I'm gonna go to grad school. And you're like, hey, I'm over here too, a part of the Bill family. Right? Like somebody's gotta, like, and so I could see that being a very interesting conversation, but it wasn't at until that he was unable to complete the graduate program that he said, time out. something else is going on. Let's pick up there when we come back from the break. be right back. Alright everybody, we are back here with Allison Shrier and we've gotten to a point where it's that trigger moment where there's been things going on. There's been behavioral. Allison, but your husband has not been able to complete his graduate program and that's maybe the moment where he says there's something going on. Let's talk about just a little bit. So tell me what his thought process was. What? made him, what were the changes that actually made him unable? Because he sounds like a smart guy, you know, I he's a software engineer, that's a whole lot smarter than me. But tell me, because I want people, know, education is really an important thing for us. Give me a sense of those behavioral changes, some of those that really, for him, said, I need to go in, this isn't normal, we need to start pursuing some help. Sure. So he had an inability to complete anything. So anything that he would start off to do, even if we would sit together, I would help him make a list that you need to complete these tasks in this order, which at the time, right, I was like, wow, this is so odd. I mean, this guy was a rock star software engineer, but he needs me to help him create a list to help him get through the things that he needs to do. And now this wasn't a memory thing, right? Because his dementia didn't have the memory component. It was just procedural memory. was the ability to follow any kind of a process. Executive functioning, right? It was executive functioning problems. So he recognized that that was different, that that wasn't always who he was. And so that is what... And also, I think more than anything, he was really depressed. So he was pretty blue about the fact that he hadn't been able to complete this... program. And so when he went to see a psychiatrist, the psychiatrist diagnosed him with depression, but she also diagnosed him with something that she called adult onset ADHD. So she said, I think the thing is that your whole life you've probably had ADHD, but you were so high functioning that you've been able to mask it. And so now that you're getting a little bit older, you're having a harder time masking it. So what we're really seeing that's getting in the way of you're getting your work done is that you have terrible ADHD and depression. And so that made sense to me as if there is a thing called adult onset ADHD. I bought it and he bought it. But what didn't make any sense is that nothing helped. So he took medications, tried making lists, like nothing made it get any better. But because we already had a diagnosis for years, we were just trying to figure out how do you manage that diagnosis more than trying to figure out what is the right diagnosis. It's almost like you went down the wrong rabbit trail. and so let's go back to kind of you at this point because your husband quit his job to go to grad school. Did you go back to work? Did you guys swap positions? Are you not working at this time and you guys are just moving forward together in that direction? I was not working and we were living off of savings and he was convinced that once he got this ADHD under control, everything would be okay again. And so we both sort of rode with that, that once the ADHD is under control, things are gonna be okay. He did get a job, so he got another job as a software engineer and he... It wasn't working. So he would make mistakes that upon reflection were really like rank beginner mistakes, like things that he should have seen that he just didn't see. And so he would come home and he would just be so upset and agitated because this isn't like him. It's not like him to make these kinds of errors. And we're like, ah, we need to try a different medication. Like you're on the wrong ADD medication. And after a year at that job, they let him go. And they said that you just never seemed like the guy that your resume said you were. You never caught on fire. So they let him go. And then we're again, we're both back at home. And I'm just sort of living in this place of wondering, like, is it ADHD? We started seeing a therapist who was for couples that one or the other or both have ADHD. I would bring stories to our sessions like, so this happened and this happened and this happened. And this just doesn't sound like ADD to me. And the guy was like, well, know, ADHD can manifest in many different ways. I was like, it was crazy stuff. And yet we just kept riding with that. He did get one more job. A friend hired him at Microsoft. And I thought, okay, this is it. This is it. Now that he's with friends again. He's in an environment that he knows really well, he's really comfortable. Like this is when he's gonna kind of kick into gear. But meanwhile, he was getting stranger and stranger at home, like doing things, saying things that didn't make a lot of sense. And within a couple of weeks, the guy who had hired him was a very good friend and his wife called me and she was like, okay, so what's up with Evan? Like he doesn't show up at meetings, he's playing foosball all the time. He doesn't seem to really be tracking what they're doing. And so I just thought, man, here we go again. Like it's just, this is just never gonna stop. Yeah. How was your marriage at this point? if he's- Yeah. Marriage was bad. And the reason it was bad is because I thought that he just wasn't trying hard enough. Like, know people with ADHD, right? Yeah, they take their meds and they get on with it. Yeah. And they, they at least like try to stick with the list that they've made for the day. Like, we were we were at a point where he would have like, three things he needs to get done today. And I would make sticky notes and I'd put them on the kitchen, on the cabinet. Like here are the three things Evan needs to do today. So bear in mind now, I've also got like at this point, a 10 year old and a 12 year old and I do the same thing for them. And it's like, they get their sticky notes accomplished. I could imagine that being so frustrating. Allison, I could imagine like I'm doing the same thing for my children that I am doing for my husband, who is exceptionally talented and what's going on. Yeah. Yeah. So tell me about a point where you're you make the change and you all realize what actually the Yeah, what took you to actually medical professional to actually you've been with a psychiatrist and I'm in the mental health field and I'm sitting here thinking I'm like behavioral health and primary care do not work well together. in the sense of from from a coordination of care and that's something that we always want to do in the health care industry. But but in practice it is not done well and it's very evident that you've had a misdiagnosis for a number of years which is negatively impacted your family and right. So what was that trigger point that set you said we need more testing. We need something different or I'm gonna I'm gonna do something different right? That is such a good question. what happened is that I didn't think I could stay in this marriage. was just absolutely like, was trying everything I could to make it work. And I started seeing a therapist. my husband, meanwhile, by the way, had been to like five different therapists at this point. And he'd been to a neurologist and he'd been to a neuropsychologist. Wow, so he went to a medical professional. He went and said, hey, let's have some. They didn't. They didn't say anything. Go ahead. Well, the neurologists said they did an MRI. This was in 2009. They did an MRI. the neurologist, I remember Evan, when he came home, he was just so upset. He said the guy actually slapped me on the shoulder and said, I don't know what to tell you. There's nothing wrong with your brain. Wow. Now, I will share with you that in 2012, when we had more when we had work done at the University of California in San Francisco, they looked at that same MRI that had been done in 2009 and they were like, my God, it's just like, hello, I have dementia. He missed it. just simply. Yes, because I think we were seeing somebody who was not necessarily a dementia specialist because we didn't know we needed one. And I think that a problem that we run into is that for that neurologist and others like him, they're looking for something that is there that shouldn't be like say a tumor, rather something there that isn't there that should be like the right amount of brain shrinkage for a person that age. But anyway, so to back that up then, I... We had all of this data that was pointing to absolutely nothing. And so I thought, OK, I just don't know. How do I keep doing this? How do I stay in this marriage? Because I don't want my marriage to end. So I started seeing a therapist. And I would come in with stories about things that were going on with Evan and how it was impacting the kids. And she would help me chew on it and work through it. And then one day, I went to see her. And I said, you know what? We need to have a whiteboard moment. where I'm gonna tell you just in the last week all of the things that have happened that absolutely positively cannot possibly be ADD. And so I did that. This happened, then this happened, this is what he did, this is what I did, this is how he responded, then this happened. And at the end of it, I remember looking at her and she was just shaking her head and she said, my God, I feel like I finally heard you. And she said, I need you to go see. And she pointed us to another psychiatrist. And she said, I think that this person will be able to figure out what it is because I'm telling you, it is not ADD. Right. So Evan and I went together to see this new psychiatrist. she spent time with both of us and then she called me up and she said, I need to see just you by yourself. So I went in to see her and she said, okay, so your husband doesn't have ADD. And I have, here's the steps we're going to go through to determine what he does have. Like finally somebody's interested in physiological testing. let's look at blood work, right? Let's look at, so she made a list of like, let's look at his sleep habits. So she made a list of all of the things we were going to go through. And at the very bottom of the list was frontotemporal dementia. And she said, if none of these things are the problem, then the problem is that he has frontotemporal Yeah, and that's I know JJ had mentioned she in your intro about you said FTD and I'm like, I don't know that people know what FTD means besides the flowers. And also I think it's because of the diagnosis of Bruce Willis, I think that has something that has really brought forefront what this disease is because it's not something that you really heard, you don't really hear a lot about. So. Well, people think of dementia. think of dementia and the different behaviors. And I'm so glad, Allison, that you said this is an executive functioning issue that's procedural more than it is a memory issue so that people are like, because I think it was our friend Carrie Alberts, whose dementia darling, I think she said there's good. She's she's she's our bestie. I think it's 126 different types of dementias out there. I believe that was what she said. We did a podcast together with another group on sleep. I think that's really important. that dementia is not just an aging illness. Because that's why I was so specific about how old was your husband. And so you all get, you narrow it down, you go through and you cross through. And I almost feel like a piece of paper. Not this, not this, not this, not this. And so you get this diagnosis. And then what I have question. I have a question about her though. One question before yours. What did you feel like when that lady gave you a list? Did you feel hopeful though? Because she said no. What was that feeling that minute when somebody actually maybe heard and said no, it's not this disease that you've been thinking it was? What did you feel at that second? I felt relief because I thought, finally, finally, because so many of the things on the list, they were fixable, right? okay, so if he has a vitamin B deficiency, well, gosh, we'll just give him vitamin B. so if it's a sleep issue, phew, we can fix a sleep issue. So I was convinced that we, first of all, that we would never get to the bottom of the list. Same, same with cancer. Same. Yeah, yeah, yeah, yeah. So I knew that it was going to be like, yeah, number one or number two, easy peasy. And I'll be too. We'll be laughing over cocktails about how hilarious it was that he went for six years of just getting like weirder and weirder and weirder. And now he's back to his beautiful sweet self. my gosh. Yeah, is that your that's my marriage is fixed. My boys are going to be fine and we're going to sit on rocking chairs in the port. That is that's and that's my career. That's your mindset. Yep. So now that JJ has gotten on fire for a second. you get this diagnosis and then what happens? Because I'm assuming there is both, and I don't want to put words in your mouth, I would think there is relief because we have an answer and terror, fear, and what happens next because you have a husband who is, he's still in his 30s, correct? No, so by this time he's in his 40s. in his 40s, but even still, that's like mom with early onset diagnosis at 40, or early onset at 48. Like, holy crap, like you're gonna be, this is not what we had planned. So what are you going through at that point? Right. You're absolutely right. Relief and terror. And so for the relief, just to look at that a little bit more deeply, what I mean by relief is that I had been, I would say that my overarching emotional response towards my husband for the past X number of years had been anger, anger and disappointment. You could fix this, but you're choosing not to. And I hated and I hate still. the fact that my children got to witness this relationship that was so broken in response to the disease. So the good part is that I would say that I felt like a vacuum had sort of like sucked out all the anger and replaced it with sadness. wow, you're exactly right. But I would take sadness over anger any day, right? Because sadness, there's no blame. I was able to let go of the blame. And to me, that was just absolutely liberating. Wow, and you know, and I think this I think about the impact that it not only had on your marriage, but even we talked a little bit about just that this had to have an impact on your boys as well in the sense of they're watching a person like for you as the mom, you look at it and you say the dad that they see and experience is not the man that you met originally. And so I know that you're trying to claw back that that man so that you're like, where's the sweet person? because they're learning, they're seeing this and they're probably like, this is not the same as everybody else's, this is kind of weird. I think being able to pinpoint the why helps with understanding the why. Do you know what I mean? Like the why for the behavior and so at least it gives you, I don't wanna say an excuse, but you can excuse away the abnormality of it. so you get this, so you've gotten the diagnosis. And I'm gonna go back to again, and now how do you move on with your life? How do you guys say, do you all sit down and have a conversation and say, this is how we're going to move forward as a couple. These are the things that we need to do to help support us as a couple and as parents to these wonderful little human beings. Cause the boys at this point are I think 12 and 17, is that right? 12 and 15, thank you. Apparently I can't add. And, but. So then how do you decide to move forward? Because you're living with. Okay, so to be clear, at this point, my husband was beyond being able to function as the other half of a couple. Gotcha. So he was very much one of the people, he was a person who needed to be cared for. And so we, boy, we came home from the doctor's office and... The boys knew that we were out figuring out what was making dad so strange. we all sat down together and I shared with them the diagnosis and that there is definitely something wrong with dad's brain and that it's going to get worse. You know what? Hold on one second, Allison. I hate to interrupt you. We've got to take a break because I'm over my time. We'll take a break. be right back. We're back here with Alison Shrier and this is a part that when you tell me this, this is kind of, it touches me, where you say we've got this diagnosis and your husband, is not gonna, he's not functioning. You've gone home and you've had this conversation with your boys and you've told them, hey, this is how it is and this is going to get worse over time. And you gotta start living these years that you have left because it ultimately, this disease is. This is not a disease that's going to get better. So I want to talk about those years because I know there were some changes throughout that time. So let's go ahead and share that. Yeah, so it was a tumultuous time, of course. And it was other things that factored in. year earlier before the diagnosis, when I didn't know what was going on, but it was really clear that Evan was never going to work again, like he'd lost his last job. And I knew that I was going to need to have to work. And I knew that we probably, the kids were in private school at the time. And I thought, I have no idea what our financial future is like. Like they probably can't be in private school. But the school district that we lived in, the reason they went to private school is because the district that we lived in was not conducive to education. Shall we stop? strongest. That's a nice way to be not conducive to education. Yeah. So I, a year earlier than before we got the diagnosis, I made the decision to get an apartment in a better school district that was about six miles from our house. My husband wouldn't come with us to the apartment because we had a dog and the dog wasn't going to be allowed in the apartment and he didn't want to, he'd rather stay with the dog than move with me and the kids. And so we were already in this weird, kind of broken, living in this little apartment and spending every weekend at the house. And now we've got this diagnosis and my husband is very, very loud. He's loud a lot of the time when he gets upset, which happens a lot because he's frustrated because he can't do things that he knows he should be able to do. his response to that is that he screams. And so I thought we were going to get kicked out of the apartment because it's so at this point, by the way, Two weeks before we got the actual diagnosis remember we're going down that list and when it was really clear where we were going to land I Convinced him that he should come live in the apartment with us. So he came to the apartment And we got the diagnosis and then I thought okay I need to we need to do some things differently here the house that we lived in was a beautiful house but it was at the end of a dead-end road on ten acres and My husband was no longer going to be able to drive, so we needed to live in town. So I needed to, at the same time, while trying to sort him out, get the kids into new schools, get a new house. I had to sell the other house and then get another house. So trying to manage all of those things and then insurance, right? Like trying to find the right insurance and trying to find the right doctors and dealing with the fact that I've got kids who every day, my younger one when he would go to school, it was weeks before they went to school again. But when he went to school in the middle of the day with great regularity, they would call me that I needed to come pick him up. So trying to manage the emotions of two young kids while trying to manage my own emotions. And then my husband comes home one day and he is just a complete wreck because he has decided to do some online research. And I remember the day that he came in and he said, I'm going to be dead in seven years. He just fell apart crying and crying and I've got the kids and I've got a- my God, I don't know that that that is. That's what we talked about and I don't say this facetiously. That is a dumpster fire. That is a you are a you are a sandwich generation caregiver. You are managing everyone and I guess the thing is that I would ask is are you taking care of yourself? Because this is the notorious thing. Are you going and keeping up your regular like mine is I miss mammograms for I don't know three years. You know, are you going and taking care of yourself? Because right now you are taking care of everyone else. And honestly, I say this respectfully to your husband. You're taking care of three children. You might as well have had a third child because you're doing similar type behaviors, similar type reminders. And are you still getting therapy at this time? So yes, I was still seeing my therapist and that was a lifeline. That was really important. I also very early on found a support group. you know, like, wow, right? That's the first thing I always tell everybody who's newly diagnosed is, oh my God, find a support group. your tribe. Yeah. And I did, I went through a couple, one of the people, somebody who I know, who I'm close to in my life, heard that we had dementia, his wife had dementia, he was like, you need to come to my support group, swooped me in. So that was great. But as far as taking care of me, no. I'm one of those people who doesn't eat when I'm upset. So I just was like wasting away, just like getting, just rail thin, unhealthy. walking all the time. Like the only thing that in the evenings I would just go like walk for miles and miles and miles because it was the like I could cry. I'm out there by myself. I can like breathe in air and you know just so that was my therapy in addition to talking to my therapist and my support group was walking all the time but I wasn't eating so yeah. wow. It was not the best time. know, first of all, I want to thank you for saying, yes, I was in therapy. Yes, I found a group because there's so many people who don't take those steps. And if those are just the two steps that you can take, please, you know, get the time for that. So thank you. The people saying, yes, it's absolutely okay. I know that you were able, you kept Evan at home for two years. At what point, what was your turning point of saying, I can't manage this anymore? and then let me know about, he went to multiple facilities, let us kinda know about the transition for that, Allison. Yeah, thank you for asking about that. It got to a point where Evan's behaviors were too challenging for the kids to be around. Got it. And so I talked about the screaming, and he would get, he would scream at them. He was saying and doing things that were very inappropriate. And it was really taking a toll on everybody. So the kids were both in therapy. I was in therapy. Evan was seeing his doctor. And all of the medical professionals were like, OK, this is something's going to give here. Like, these people cannot all keep living in the same house. And so the kids' therapist said, look, either he has to leave or they do. But they can't live with him anymore. Did it impact, let me ask you this, and I know you got one child on the spectrum, did it impact them educationally? Was it impacting their studies, their things like that? Because that's what I think most parents worry about is the impact of the person that you're caring for, the secondary kind of trauma that they're experiencing. And it doesn't mean you're a CPS complaint. It doesn't mean that they're calling Child Protective Services because you're not caring for your kids because you're caring for everybody. But I think this is the ripple effect that any type of chronic complex illness can have or when you're caring for another person, like the ripple effect and almost like casualties. You are a casualty, Allison, because you think about all the way that it impacted you. So you guys make that decision to go ahead and transition. And so how was that experience for you guys? You know, it was actually really positive. And I also just do want to acknowledge that, yeah, my kids, I can only imagine what their academic success would have been like if they had not had this in their lives because it crushed them. Yeah. Yeah. It wasn't good. But anyway, you know what? I really played into Evan's narcissism at this point. He was so irritated by the kids all the time. We had an amazing neurologist. I sent her a letter and I said, here's the deal. I have found a place for Evan to go. I described it to her and I said, we have to get him out of the house. I need you to tell him that moving out of the house would be the best thing for his brain because if he thinks it's better for him to no longer live with us, he will want to go live someplace else. So we went to see her and she was like, totally Academy Award material. She told him about how important his brain health was and that there was this place that she knew of and he could live there, he could have his own apartment. Allison can visit you all the time, the boys can visit you all the time, but they won't be getting into your stuff anymore. You're going to be so much happier. We got home from that appointment. He went upstairs and he packed a suitcase. He said, I'm ready to go home. I hear, it's so important to know when you say narcissism and how hard it was, the impact of him on the boys, but the things he was saying, it's so important for people to understand this is the disease. Because the man that you fell in love with that you said, I married him because I didn't have to change him, this is so important to say, this is a terrible disease and this was not him. And I want my kids to, I wish they could have seen who he really was. my gosh, absolutely. So I know it's, can't, I feel like we need another whole session. I feel like we've talked about this a lot. But I think this comes down to, because it's time for sister questions, but I wanna kind of like, kind of tell me where you're at today. Tell me, kind of pull us forward, fast forward, because he's moved there, but tell us where we are today, because you did something with this experience that. I don't think anybody would have thought, that was a hard right. So, yeah. Crazy stuff. Yeah. So where I am today? Well, I did have to go back to work eventually. Okay. Yeah. And I decided to just do a career pivot and I got into dementia education. Okay. Yeah. So I got certified in Washington state to teach classes that are mandated for anybody who works in long-term care. I went through the whole Teepa Snow program, got all of those certifications. So I was in long-term care communities teaching. the people who were the boots on the ground professional caregivers wound up leaving that and going to the University of Washington. I was there for three years with a group called the Memory and Brain Wellness Center. And so there too, I was working on education, but this time the students were primary care providers who were trying to become better equipped to detect, diagnose, and support people with dementia. So I managed a program where the teachers were neurologists, neuropsychologists, and it was phenomenal. And I love, love, love that. Meanwhile, in the background, I had this idea for a tool that I wished that I had had when Evan was living in long-term care and he'd gone nonverbal and it was really hard to find anything to talk about. And so I used to bring magazines and books and I'd flip through pictures and have conversations. And anyway, that led to me creating Zinnia TV, is what I do now. So Zinnia TV is a tool. It's a streaming service. It's an app, right? It's an app that is a service with content that is custom curated, it's research backed, and it is all about creating opportunities to connect and have conversations with people who can't track a plot, can't tell fact from fiction, can't process rapidly moving audio and video. It helps reduce agitation. We're doing follow-on research. We've done lots of research, but we're doing a follow-on study right now specifically looking at Zinnia as a tool to reduce the use of antipsychotics. to reduce emergency room trips and long-term care. And it helps with activities of daily living. Oh, I love that. Long-term care communities and family caregivers use Zinnia as just kind of a go-to. Like, I know that when she's going to start getting really upset, I don't have to get all freaked out because I've got the thing that is going to help her calm down. Yay. So that's what we're about. It is so all of the things and we're I know that we're going to list all of these things because the tools that you have are amazing and I know that there are so many people. It's like the TV show for kids. You can set your kids down. It's like all that and I say children, but it's such a calming thing for them and learning and and you know learning your colors and things like that. I think about things our sister did with her kids, but it is so it's such a tool and I know there's so many people that don't know about it and I see. what your experience has led you to. I do wanna make sure everyone is aware, course, Evan did pass away in 2019. Tell me, because I do wanna make sure, you know, I see what you took away from this experience and this amazing thing that you've done, but I wanna make sure that people understand what that felt like for you, Allison, because a lot of caregivers will say, you know, I had this journey, and this is hard for me. People talk about, how wonderful this journey was, and we were, you all this, and you have been very open to say, this was hard, this was hard on my kids, it was very hard on my marriage, I had to make hard decisions, but I want you to tell me, just, you tell me about where you were and how you felt at that time, where Evan was when he passed away. Yeah, wow. When Evan passed away, I was ready. I know that people like, I was coming, but I just wasn't ready for it. I was ready. It broke my heart to see who he had become and to see he was so frail. He had got down to probably he was six, one. good weight for him, 190 pounds. He was probably down to like 120 pounds maybe. I mean, he was just this frail person. He was in pain all the time. His FTD, he started getting ALS-like symptoms, which is not uncommon. Those go together. And so he had like these, his fingers would rupture. We had surgery to release his fingers. I mean, it was just trying to make life bearable for him. And it got to a point where he could no longer swallow. He would choke on everything. And I think the hardest part was not having any training. A message to everybody is like, read a book or something. Learn about how you help someone die. I didn't. And I really didn't understand what it would be like. And I gathered people in the room. had somebody on guitar. I guess we're supposed to be like, kumbaya, I don't know. And so I think that we did a pretty good job. But at the same time, even though I was ready for him to go, It was so hard to let him go. And it's so hard as a family caregiver too, when you're on hospice, the hospice people are like, and if he needs it, give him morphine. And you're like, I don't feel qualified to be doing this. Like give him morphine. so you're like, how much do I, anyway, so the end there was like question marks and concerns, but our family rallied. My younger son had not seen his dad in two years. Yeah. because it was just too hard for him. And I remember I came home and I said, if you're going to go see your dad, you're going to need to do it. If you want to see him before he dies, you need to go now and see his dad. And he was like, daddy's dying? And I was like, wow, where have you been? Dad's dying. And he did. He rallied. He came. My other son flew in from college. My sisters came in from the East Coast. We were with him. He was in my arms. I don't think it could have been any better. And he was just an amazing trooper. He was a trooper at the end. I really saw him waiting. I would say, can you wait till Linda gets here? Just wait till Linda gets here. Linda got there. like, just wait till Tess gets here. Just wait. And he hung on. And yeah. I hear in your voice though, and I've heard it throughout, you've taken all of this and you've found a piece, but you have found a way to, and I get all, you know, I'm not getting my Kleenex, you empower so many people with this hard road that you have taken. And I'm just so impressed with everything that you've done, Allison. Thank you so much. I'm just, yeah. It's impressive. I think that we're yeah, I think it's grateful that you're willing that you're open to sharing this because this is the hardest part of your life and you're watching the person that you care about the most change and and not change in a good way, but change in decline. And I agree with you. I'm so grateful for you to say read a book about how to how to die. Like you need to know and our society is so against aging and it's so against we don't want to talk about death and the reality is is that death could be a different experience if you're informed be informed and you know, I think You know, I think that's so important and I am so thankful to you for creating Zinnia Because I think that it's going I mean Dementia is is is so fast growing. There is a national strategy for it. And so for in the US for all of our other listeners and and and and if you don't have it in your country, come and take a look at the dementia strategy and how you advocate for that in your where you live. But I'm like I feel like Zinnia should be on all the cable shows like hey Cox pick up Zinnia. You've got the kitty programming. Have some have some different programming because I think about like. Mom could probably appreciate even probably watching the content because you know as we age though we we process differently our brain changes and I think that's so important so that it's important to have programming that supports brain health and and at least maintains and and tries to help move that forward and maintain as long as possible. I know it's time for sister questions because I'm going to take the time to do it. So and we're a little over time but that's okay Andy we love you. And he's our producer, so we're like, yeah, Andy, we know. But Jay, what is the question that you have for Allison? Gosh, I keep saying I'm so grateful because I'm just, ugh. What is a message that you would give someone that is starting their journey with someone that has just been diagnosed with FDD? What is one thing that you would share with them? them more as I look back. Right? The one thing that I think, we'll always look back and think like, I should have done this or that differently. And the one thing I really wish I'd done differently is think about what does it feel like physically to be in his body that is not working so well anymore? Especially once he was bedridden. I'd come in and I'd rub his feet, but I thought, you know what would have been really good? To like rub his feet and rub his legs and rub his hands and rub his arms. I just wish I'd thought more about. what it feels like physically to be in his body and had given him more physical, more physical touch and love towards the end. Well, you know, but in the end, I think that's as much for you too. It's for him, but also because what that does is it pulls back the closeness of what, where you began. Like touch is so important and that touch is a connection point. It's not just words, it's being present with, but when you go and you touch someone, when you give that hug, it's so regulating to, especially when you, if you are a quick hugger, Hug somebody for about 15 to 20 seconds and you are going to feel magical. Hug away. Take it longer. I'll always end with this question and I'm gonna end on a lighter note. I'm gonna ask you, Allison, I always do this. What is your favorite guilty pleasure? What is the one thing that you do just for you? can be anything. What do you love to do just for you? You know, I think that, well, probably reading a book. Do you hide when you do it? Do you get a secret place? out. Make a cup of tea. mean like truly being able to just disappear someplace with a book and just let go of all of the things that I should be doing and allow myself to just be in this other world. Give yourself permission gosh Allison. my gosh. I feel like we could do so much more We are so going to make sure that we get you connected with Zinnia TV because I think this is an advocating to everybody hey this needs to be Included in your programming this needs to people need to have access and and it's for all And it's what I will say is for all so please guys Check this out. What's the website that they can find out? It's www.Zinniatv.com. That's Z-I-N-N-I-A-T-V.com. It's named after the Zinnia flower because I'm a mad gardener and Zinnias grow even in really, really crappy conditions. I love it. love that. Alright, Zinni, I love that. Now I didn't know that, but I love when we walked away with some education. know it. Allison, thank you so much for being with us and we are so privileged and until we confess again we will see you next time. Bye bye. beautiful. Thank you. Well, friends, that's a wrap on this week's confession. Thanks so much for listening in to the podcast. 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