I'm Dying to Tell You
I'm Dying to Tell You
Elin Adcock - Her Journey Facing ALS and FTD Together
Here, Elin Adcock shares her powerful journey through her husband’s ALS and frontotemporal dementia (FTD) diagnoses—and how she’s now leading the charge to support families facing the same fight. When Elin's husband, Larry was diagnosed with both ALS and FTD, her world changed forever. In this episode, Elin shares how she navigated the overwhelming challenges of caregiving through two devastating and progressive diseases—often without a clear roadmap or coordinated support. After her husband’s passing, Elin turned her grief into action, becoming a fierce advocate for families facing similar dual diagnoses. Her story is one of love, resilience, and the power of transforming personal loss into lasting impact. Whether you're a caregiver, healthcare professional, or someone seeking hope amid hardship, this conversation offers insight, inspiration, and a call for greater awareness. Thanks for listening and sharing with a friend. Hugs, Lorri!
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Hey, I'm Paul.
SPEAKER_04:And I'm Christian.
SPEAKER_03:Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from ALS.
SPEAKER_04:There is no cure for our mom or anyone else with ALS. But right now, she's on a mission to find and share stories of inspiration.
SPEAKER_03:Coming to you from Cincinnati, Ohio, we're happy to introduce the one lady we've both loved since the first day we laid eyes on her. The queen of the queen city, our mom, your host, Lori.
SPEAKER_01:Hi, this is Lori, your host of I'm Dying to Tell You. Thank you for being here. So if you know ALS or you know FTD, frontotemporal dementia, you know how incredibly difficult and heartbreaking both of those are. But can you even imagine? Living with or having the person that you love, living with both of those at the very same time. That's what my guest today, Ellen Adcock, went through with her precious husband, Larry, who has since passed away. And what she is doing now is super incredible and inspiring. to give back to other people that are going through exactly what she is. So we're just going to jump right in. And I'm going to connect with Ellen from Navarre, Florida. And we're going to talk about her experience and what she is dying to tell you. Okay, let's go to our chat.
SPEAKER_00:So
SPEAKER_01:today that we're talking was the anniversary of my mom passing from FTD. And so it's been three years. And man, it's just, yeah, it's even hard to like think about it because of my mom.
SPEAKER_02:It's a very tough conversation. And I talk to people about FTD all the time. Yeah. I'm on support calls all the time and speak to people about the situations that they're going through and can maintain my composure and can keep focused on solution-based answers and support them emotionally. When I go back into my own journey, it's difficult. It's been two years and I've really wrapped myself in advocacy. Yeah. really protected myself and all of the things I can do for other people being in service to other people really helps me get through. Yeah. But I've noticed in the last, I don't know, six months or so that hard outer shell is really starting to soften up. And a lot of the feelings are bubbling up to the surface a lot more grief is funny that way. Yeah. I don't really know when we're going to get hit by things or how it's going to happen or, but, uh, It's an ever-changing journey. Yeah, I imagine. You know what? When we're doing this, let me unplug Alexa so she doesn't sound off. Oh, okay, great. Yeah, my house is fully interconnected. One of the things that we did to help us through Larry's journey was I set up Alexa. I set up Echo Show. I have cameras everywhere. They're on the doors announcing when somebody goes out through the door. at the driveway, you know, in the backyard, everywhere, so that it was a big help to us, keeping track of a full-grown mobile adult to the impulse control of a toddler.
SPEAKER_01:Right, right, right. No, I get it. We did the same. And it's funny. It brings up a funny memory with my mom. Tell me. I have a video. I'll send it to you if I can find it. And we are trying to teach her how to say, Alexa, Call Lori. Alexa, call. Oh my gosh. She cannot. And then we wrote it down, you know, on a big, we wrote it big on a piece of paper. Oh, and she just laughed and we laughed, but we cannot, it didn't even begin to work because she couldn't, you know, we couldn't get her to understand. I have a similarly funny
SPEAKER_02:story. Larry, um, became obsessed with tickling our cat's tummy. He's an indoor outdoor cat. He's very aggressive. He's very, you know, controlling of himself. And Larry would pick him up and stretch him out like a guitar and tickle his tummy. And he would start to howl. And it sounded kind of like a baby crying. So I programmed our device so that when it heard a baby crying, it would say, Larry, please leave the cat alone. Oh,
SPEAKER_01:my
SPEAKER_02:gosh. That's great. I have started watching. I've been binge watching Call the Midwife.
SPEAKER_00:And babies
SPEAKER_02:are being born all the time on that show. And so every time a baby is born... The baby is crying and I hear, Larry, please leave the
SPEAKER_01:cat alone. Oh, it's still there. I love it. I
SPEAKER_02:love it. I'm not disabling that. I'm leaving
SPEAKER_01:that. Yeah, that's great.
UNKNOWN:Every time because I see him playing the cat guitar every time.
SPEAKER_01:Oh, absolutely. Hey, I read that you and Larry were childhood sweethearts. And then you reconnected later on in life. Tell me a little bit about that.
SPEAKER_02:We sure did. So Larry and I met here in the Northwest Panhandle of Florida on Eglin Air Force Base when he was 10 and I was eight.
SPEAKER_00:Our
SPEAKER_02:fathers were in the same squadron here. And I got the typical, we went to the same elementary school and on the playground one day he sent me a note that said, no, roses are red, violets are blue, sugar is sweet, and so are you. Will you be my girlfriend? Yes or no?
SPEAKER_01:Oh, nice. Nice.
SPEAKER_02:And I said, and I took the note in my pocket and I said, I've got to think about it. He's like, okay. My home and, you know, about dinner time, my mom's cooking dinner in the kitchen. And back then, you know, the phone, the family phone was in the kitchen. And so I had to call him in front of her and I was speaking very cryptically. And I called and I asked if Larry there and his mom, Jeannie said, yeah, let me go get him. And he came to the phone and I said, yes. And he said, yes. What? And I said, um, the note looking at me, you know, side eye. He says, oh, okay, cool. See you in school tomorrow. Oh, you know, then we were boyfriend and girlfriend from that point forward. But, um, We moved to Germany after that. His parents moved to Germany. We all stayed in touch. Our parents were very close with one another. And one year he would be taller than me. And the next year I would be taller than him. And we just kind of grew up together that way. But when we became young adults, we were in two different states and you always had a girlfriend or I always had a boyfriend and the timing was never right. So I married in my mid twenties and Larry never married. And when my first marriage began to fail or when it had failed, my sister knew it had failed. She got us both together at a birthday party of hers and we saw each other and he was just a gog. And I was like, wow, this is Larry. This isn't Larry, you know, but I was in the middle of a divorce and had to focus on that. And About nine months later, on Valentine's Day, I got two dozen roses at my office. And I thought, I was thinking it was my ex-husband who had sent me these roses, trying to make up with me after, you know, it wasn't him. It was Larry, who knew it would be my first Valentine's Day, roses. And we talked every night after that for about six months. And Finally, when he says, you know what I'm going to do? I'm just going to move to Texas because he was in Georgia and I was in Texas at the time. I'm going to move to Texas and I'm going to court you. And I said, Larry, I've got two children. I've watched my girlfriends when they got divorced and what their children went through. I'm not going through that. If you're just planning on dating me because I'm not going to put my kids through that. Sounds like a marriage proposal.
SPEAKER_00:Wait, wait, wait. That's not what I meant.
SPEAKER_02:Two weeks later, he had sold whatever he couldn't pack into his little Honda Civic and moved to Texas and found a place to stay and waited for me. Wow. We were married for 20 years before he packed. Oh, that's amazing. So I knew Larry from the time he was eight until, yeah. Yeah.
SPEAKER_01:Oh, my
SPEAKER_02:gosh. I really, really, really knew him, and he really,
SPEAKER_01:really, really knew me. Yeah. Oh, for sure. Tell me about when came first, ALS, FTD. FTD came
SPEAKER_02:first. FTD definitely came first. There were a couple of years that, you know, it just seemed like Larry was losing interest in everything, in the family, in us. We used to marvel at how we could– sit in a car together and not talk. We didn't have to talk. We didn't have to converse because we just had this communication going on. We could work on projects together all day long and didn't even really have to have communication. But there came a time when there was no nonverbal communication either. Like he was just not there, not present. What's going on?
SPEAKER_00:It
SPEAKER_02:almost felt like he was losing interest in me and our family. He would come home and he was exhausted. in the middle of the workday and he would take a nap and then he would grab a sandwich and then he would go back to work. There were a lot of signs as I look back that probably extended back five years before I realized that there's really something wrong. But we thought he was depressed. His mother had passed. He'd had a lot of, we'd had a lot of loss over the course of the five years before he died with the loss of my mother and my father and his mother and You know, we moved from Texas to Florida and gave up all of our friends so that we could be closer to his family while his mother was ill. And I just thought he was depressed. But the aha moment came when he had decided he was going to quit working in the delivery job that he was working at. He delivered doors and windows for a local lumber yard. And he was going to go back to driving a school bus, which he had done previously and he loved. because it was going to be less physically demanding on him. And again, we thought he was depressed. We just thought he was getting older. Delivering doors and windows is very hard work. He was training for the bus job. And one morning at about 11 o'clock, he came home and said, well, I've been fired. And I said, what do you mean you've been fired? Well, I was telling my boss, you know, about the backpack that I was going to pack. bring with me on the bus i've got my brass knuckles i've got a box cutter i've got a screwdriver i can use as a weapon in case the kids attack me and it was like like the shutter of a camera just zooming in on his face i mean that's the visual that i have and just this paradigm shift in my brain of there's something wrong in your brain
SPEAKER_00:this
SPEAKER_02:is not just being depressed there's something really wrong with your brain and I don't know what it is, but I'm going to figure it out. Then came the internet searches and the symptoms and what could this be? Could this be Lyme disease? Could he have a brain tumor? I never thought I would be praying for a brain tumor, but I did, but it wasn't. And I came across PICS disease, which was the original name for FTD. At the same time that Alzheimer was researching Alzheimer's disease, In the same facility, a doctor named Pick was researching a similar disease, and it was named Pick's disease, where the frontal and temporal lobes were damaged. Not in the same way that Alzheimer's, which happens in the back of the brain, and the features were different. Memory is not impacted, but language can be impacted. Impulse control is impacted. Executive function, which is the ability to plan out actions. Think about Alzheimer's. it takes to put together a peanut butter sandwich. You and I are like, yeah, let me put together a peanut butter sandwich and boom, I'm eating the sandwich, but you have to locate the bread. You have to locate the peanut butter. You have to locate the jelly. You have to locate the knife. You have to locate a plate. You have to prep the bread, you know, all these steps. Well, if you don't have good executive function, you can't follow those steps.
SPEAKER_01:Yeah.
SPEAKER_02:And we had seen a lot of those symptoms in him. He was a carpenter. He built things for us. He, you know, worked on cars. He took engines apart and put them back together again. And I was seeing evidence of his inability to do those things and was just really confused by them.
SPEAKER_01:So how long did it take you to get a diagnosis of FTD after you started seeing these changes?
SPEAKER_02:Yeah. So the job loss was in October. We struggled. This was just after October. you know, COVID and doctor's offices were just coming back online. It was October of 2021. And I couldn't get a doctor's appointment anywhere in town. We live in Navarre, Florida, which is in the panhandle. And there are no specialists. There are no clinics. There's nothing within five hours of us. So I was struggling to find a neurologist that we could get an appointment with. I ended up because my family lives down in Tampa. finding a neurologist that we could schedule an appointment with down there. And that was January. And we did the CTs and we did an MRI and a number of other tests. And that neurologist was leaning towards Alzheimer's and was just thinking that Larry was having memory problems. He didn't really pay attention. I didn't know enough to really send something in advance, but I was saying things to him. Without saying them in front of Larry, because FTD patients can get really upset
SPEAKER_00:if
SPEAKER_02:they feel like they're being undermined by the people that are in the appointments with them. So I was trying to give signals to this doctor and he wasn't picking up what I was putting down.
SPEAKER_00:And
SPEAKER_02:he thought Larry had Alzheimer's and was going to send him home with Aricept, which was contraindicated for FTD, which I knew from my research.
SPEAKER_00:And I was
SPEAKER_02:going to argue with him.
SPEAKER_00:But
SPEAKER_02:there was a voice in my head that just said, he doesn't know. You would be wasting your time. So he sent us home with a diagnosis of MCI, mild cognitive impairment. And I went back to our PCP, which is really a physician's assistant. And she was the one who helped us on our entire journey more than anybody else and told her our experience. And I said, I know this isn't right. I need to find somebody local. I need to find somebody who's going to help me get the answers. We finally got an appointment in March with a local neurologist who saw us, set him up with a neuropsych exam, which was a comprehensive over the course of a couple of days, like eight hours worth of tests. They came back and they said, yeah, he has FTD. So our diagnostic journey was not as long and involved as some that I've heard.
SPEAKER_00:Yeah,
SPEAKER_02:yeah. But then it was April when I was starting to notice he can't walk a quarter mile with me around the block.
SPEAKER_01:So then you started noticing the physical. Right. The physical changes and you're like, does this have anything to do with the FTP? Right. We thought at first he had COPD
SPEAKER_02:because he was having trouble breathing.
SPEAKER_01:Oh, yeah. Makes sense.
SPEAKER_02:His mother had COPD and his father had COPD and... He has a protein deficiency. Well, yeah, it's a protein deficiency. I cannot tell you right now what it was. I can't remember the name of it, but it affects the liver enzymes and it affects the ability for the lungs to heal. And so we saw a pulmonologist. But at this point in April, I think it was that we were going to the pulmonologist. Larry was also losing the ability to understand words. And so he could not follow the instructions. breathing exercises oh yeah and it wasn't until really i want to say it was july or august that our neurologist was finally listening to me and saying i'm seeing fasciculations i'm seeing the muscle i'm seeing it in his leg muscles i'm seeing it in his arms i'm seeing it in his tongue um I think we need to test him for ALS. And he's like, I don't see it. We would see it all the time. I'm like, I lay in the bed with him and the whole bed shakes all night long. Yeah. He's asleep, but the bed is shaking. It's his muscles, you know, doing that. Right. September of 2021 is when we got the EMG. Okay. And the neurologist said, 100%, you're also seeing ALS.
SPEAKER_01:Oh my gosh.
SPEAKER_02:I put him in hospice immediately. And it was December that we lost him. So that's how our journey was.
SPEAKER_01:So that was all within one year.
SPEAKER_02:All within one year.
SPEAKER_01:Yeah. Wow. Had it
SPEAKER_02:not been for the help of a support group, an FTD support group and people that I saw twice a week and was able to discuss these things with, I would not have made it through.
SPEAKER_01:Yeah. Oh, I can imagine. Yep. Yeah. I mean, ALS on its own is terrible. FTD on its own is horrific, but the two together at one time, yeah, it's really hard to imagine. So didn't Larry even understand what was going on either with his FTD or his ALS?
SPEAKER_02:Yeah. So with FTD comes, there's a diagnosis of anosognosia with many patients where they don't understand that they're sick. Everything seems normal to them
SPEAKER_00:and
SPEAKER_02:they just do not accept. And Larry did not accept that. that there was anything wrong with his brain. Did not feel that there was anything strange about not being able to walk the way he used to. He just was powering through all of it. I think, however, when he got the ALS diagnosis, he still had enough comprehension and he knew what ALS was. I think he really understood then at that point that he was sick. I remember him becoming very quiet and almost wistful, not really crying, not really emotional about it, but he seemed to understand that there was something really wrong with his muscles. And that was why he was having difficulty breathing. And his was a ball bar onset. So really the breathing was the problem. He had difficulty swallowing. I think he stopped really eating food in October and he was living off of shakes for the longest time. Because of the FDD and not understanding that he was sick, we couldn't take the normal interventions. We couldn't do a feeding tube. He wouldn't accept any kind of ventilation in IV or otherwise. And when I look back, I am so proud of his constitution. He was always a really strong person,
SPEAKER_00:had
SPEAKER_02:really strong faith, and was always very physically strong. And that held true all the way through to the end.
SPEAKER_01:Yeah. Isn't it amazing how now you look back and you can see all these different things that were there that you couldn't see then, you know, because either you're engrossed in his care or you just don't know, like you just didn't know. There were
SPEAKER_02:so many moments.
UNKNOWN:Yeah.
SPEAKER_02:I mean, because of the support group, I really had a really clear understanding of what was going on. And I looked at his PET scans and his MRIs and all that so that I could understand the areas where the damage was occurring and equate that to what I was seeing. His inability to not only generate speech, but understand it at some point was all because he had lost so much matter in the temporal lobes. That's where our language centers are. Because I had known him since he was a child, As he began to regress emotionally, I could see, oh, he's now 15. Oh, he's now 12. Oh, he's now 10. Oh, he's older than 10. Oh, he's my children were when they were five.
SPEAKER_00:And
SPEAKER_02:I could relate to him as if he were that age. While at the same time, he's a fully grown man. With memories of our marriage and memories of our life together and memories of all the things he used to do. That's a really weird dichotomy to have to navigate.
SPEAKER_01:Yeah.
SPEAKER_02:But somehow I did that. I'm not quite sure where I got to where we're talking about.
SPEAKER_01:Yeah.
SPEAKER_02:But I think I did a really good job with
SPEAKER_01:that. Yeah. What were some of the hardest times during that one year?
SPEAKER_02:Well, obviously losing him bit by bit. The same way you do with an ALS patient, you lose their mind bit by bit too.
SPEAKER_00:The
SPEAKER_02:most painful thing though, and I don't think I can describe it without being emotional. Yeah. Okay. He and I were the center of each other's world. And for him to lose interest in me, for him to not recognize how special our relationship was, was very painful.
SPEAKER_01:It's personal. Yeah. Yeah. Even though you had done your research and you understand. Yeah.
SPEAKER_02:But it still feels like a rejection, you know? For sure. It's very difficult in the face of somebody saying, yeah, you're okay. When you were the center of their world. Yeah. That's really hard.
SPEAKER_01:And By the way, you're pouring every ounce of love and energy and time that you have into that person to turn around and feel that way. And
SPEAKER_02:I knew, like your mind knows it's only because it's sick, but your heart, it's still like a dagger. Yeah. In your heart. And it's something that we deal with all the time on our support calls and try to wrap our brains around and try to love people through. Really, when you're on an FTD journey, you can no longer depend on that person to be who they were for you. When that person is your spouse, they're the person that you normally went to when there was trouble and they're no longer there. Right. So you then have to find a tribe of people that you can rely on and that will help you through those times. And unfortunately, it's often not friends and family members because they don't understand.
SPEAKER_01:Tell me about the group that you found and kind of like what you learned from them.
SPEAKER_02:Sure. So, and I'm still facilitating this chat.
UNKNOWN:Yeah.
SPEAKER_02:Sharon Hall is a woman who started this chat nine years ago. Her husband, Rod, was diagnosed with FTD and she started it back before the ages of Zoom. They were on a chat board kind of chat and they all get together on this chat board from around the country and they would talk via their keyboard. And when Zoom came around, they expanded it to Zoom. And many of the people that are still on this chat were around when she started it nine years ago. And she's a dynamo. She's got her own podcast out there, Talking FTD. It's on Spotify and a lot of other places. But she approached it from a very scientific standpoint. And she decided early on, well, we have this diagnosis. I can fall apart and I can just let the whole family fall apart. Or I can take the bull by the horns and I can learn as much about it as I can. And I can understand that it's the disease and it's not me. And I can do what I can to make things better. For every problem, there's a solution. And that's kind of the way she runs this call. We talk about any subject. And with FTD, it runs the gamut. I'm talking with a woman right now whose husband has not been diagnosed. They have four small children. He has been very violent with them. he would not see a doctor. Many with anosognosia will not admit that there's a problem and they won't go see a doctor. And his behavior is really out of control. And she's trying to get him seen by a neurologist and trying to get him diagnosed while at the same time, he's blaming her for all the things that are going wrong in his life. He's lost his job. He's lost his insurance. They're going to lose their home. Um, He helped their seven-year-old over a second story balcony one night just to be funny. When you end up with a situation like that and there's no way of looping that person in or lassoing that person in or controlling their behavior, getting them diagnosed, getting them on medications, what recourse is there but to abandon that person and save yourself and save your children?
SPEAKER_00:These
SPEAKER_02:are the kind of decisions that some FTD caregivers have to make.
SPEAKER_00:Yeah.
SPEAKER_02:We all would like to say or like to think that when our loved one is struck and stricken by this disease, that we will take care of them. Sometimes you can't. What's the name of the group? We call it the FTD chat and we have it. We advertise it on a number of private groups, the FTD spouse group. the Association for Frontotemporal Dementia, Frontotemporal Dementia 101, and ALS FTD.
SPEAKER_01:And are those Facebook groups or are those websites? Those are private Facebook groups.
SPEAKER_02:Okay. And I can supply you with those links. Yeah, that'd be great. In your notes if you'd like. But you have to join the group. You have to answer the questions.
UNKNOWN:Sure.
SPEAKER_02:They're very protective of those spaces. We want to make sure it's either a caregiver and on some of the groups, the AFTD group is for patients and caregivers. Some of them are caregivers.
SPEAKER_01:For anyone that isn't at a point where they know what they're dealing with with FTD, what advice or what watchouts do you have? that might connect someone's behavior with possible FTD. You know, just what information do you have that can lead someone to the right place?
SPEAKER_02:Sure. So I found my information on YouTube and mostly webinars that were put on by the AFTD, the Association of Frontotemporal Dementia. They have so many webinars out there describing symptoms describing clinical symptoms, describing the disease itself, describing what's right and what's not right. Perfect. That seems to be the best place for me to connect symptoms with behaviors.
SPEAKER_01:Yeah.
SPEAKER_02:I can see that I'm on a lot of ALS groups as well, and I chat with ALS and FTD people. I think it's more prevalent than we know in the ALS community. When I hear caregivers And they all get frustrated, right? There's a lot of work that's involved in caring for someone who's immobile and you have to do everything for them. But I hear when I, whenever I hear the words, he's so narcissistic, he doesn't even care about us. She doesn't understand how, you know, how her decisions are affecting the family. They are going out and spending all of this money and we don't have all of this money. And, you know, When you hear this, my mind always goes to FTD because those are classic symptoms. It's not they're losing their memory. It's not that they can't remember where they put their socks. It's not that they can't dress themselves necessarily.
SPEAKER_00:It's
SPEAKER_02:not their memory. It's things like judgment and apathy and potentially not even understanding how sick they are, as we've talked about with anosognosia. I think there's a lot of patients that are spared that, but because both ALS and FTD occur in the brain, it's not like there's a firewall in our brain that says, hey, this area is starting to degenerate. Don't go over into this other area and degenerate as well. I think that's why there's so much crossover. FTD can affect everyone differently, right? Not everybody is running down the street naked.
SPEAKER_01:Not everybody is hopping into the Corvette
SPEAKER_02:and racing around the neighborhood at 60 miles an hour when it's a 20 mile an hour speed limit. Yeah, yeah.
SPEAKER_01:All different types of behavior, for sure. Yeah. So it's been a couple of years since Larry passed. So looking back now, is there anything that you would have done differently
SPEAKER_02:sure i'm going to unequivocally say i have one regret and it has nothing to do with taking care of myself or taking care of him or any of the things like i i couldn't do any better before i knew any better right sure i'm not one to beat myself up about things that i did not know um and the the support group really helped me through all of this the the This is what I'm seeing. What do you know about this? And so they were able to give me instant feedback and I was able to act on it. I was very responsive to the advice that I was given. I was very careful about caring for myself physically. I think I was in better shape after his diagnosis than I had been in the 15 years before. I made sure that I was getting sleep. I made sure that I was walking. I made sure I was eating properly. I stopped consuming as much alcohol. I'm not saying I no longer drink alcohol because I'm out of tequila, but it wasn't as often. And I'm very conscious of here's our schedule and everything was regimented in our household. Keeping things the same and keeping on a schedule and keeping things calm in the household was instrumental in us keeping them home. Because FTD patients don't do well with noise and they don't do well with change and they don't do well with a lot of anxiety. I was really able to tamp all of that down in myself and keep really good control of all of that. We kept our Christmas tree up for two years. I didn't take it down. I didn't want anything to change and have him be confused by it. Yeah. I think I made all the right decisions at all the right time, again, only because I had the advice of good people. Yeah. I got him on hospice right away. They helped me monitor his physical condition. They got me all of the equipment that I needed. I had enlisted the people that I knew were going to help me, not the people I expected to help me, but the people who offered. And I accepted help wherever it was offered.
SPEAKER_00:Mm-hmm.
SPEAKER_02:The only regret that I have is very difficult to voice also.
SPEAKER_00:His
SPEAKER_02:last couple of days were difficult for him. They were physically difficult for him. He didn't sleep. I think he knew what was coming. And I was very careful about the medications. I didn't want to over-medicate him. But I had all of the medications necessary to sedate him.
SPEAKER_00:And
SPEAKER_02:I didn't sedate him. And he was conscious. And his last 12 hours were really difficult and confusing for him.
SPEAKER_00:He
SPEAKER_02:was conscious when he died. And I think he was really mad. He was fighting to the end. And that was very difficult to watch. So I think the only regret that I have is in not sedating him in those last hours that I knew were coming. Anyway, it's a personal regret. That's really the only one that I have. Yeah.
SPEAKER_01:When do you want people to know or to understand when it's really like to have both ALS and FTD in your life? Well,
SPEAKER_02:every patient is different. For us, it was really difficult to make the decision to do nothing. There are things we can do for ALS to slow progression. There's nothing we can do for FTD to correct the condition.
SPEAKER_00:We
SPEAKER_02:can offer medications when someone's aggressive or agitated or frightened. We can change the environment to accommodate them so that they are less afraid of what's happening. But With ALS, you have the option, I can fight, I can get a feeding tube, I can get ventilation, I can decide to be trached, I can get a wheelchair, I can do all these things.
SPEAKER_01:Right.
SPEAKER_02:It was really very difficult to do nothing except love him.
SPEAKER_00:Yeah.
SPEAKER_02:And with an FTD patient, that is the most important thing is to love them. Yeah. I see caregivers who are frustrated because they've lost their abilities. They're not the same person. I had someone tell me a couple of weeks ago, but he's lost his humanity. And
SPEAKER_00:I
SPEAKER_02:said, but how are you defining his humanity? Is it defined by the things that he can and cannot do? The things that he used to do that he can't do any longer? Or is it defined by the person that he is deep down inside? My husband never lost his humanity, ever. Not for one second did he lose his humanity.
SPEAKER_00:He
SPEAKER_02:continued to love God and he continued to love people until the day he died. We would go to McDonald's and he would fist bump strangers, everybody that he saw. You know, he's giving a little piece of himself.
SPEAKER_00:It's
SPEAKER_02:more human than anything I know. So even though somebody's losing their capabilities, they're not losing themselves. The only thing that's happening is they're regressing to an earlier version of themselves. I watched the movie A Curious Case of Benjamin Button about a month after he died. I don't know why. It was foolish. But That movie really illustrated the journey, the mental journey that he went through. That was similar to the mental journey that Larry went through. He just kept getting younger and younger and younger, but that doesn't eliminate his humanity or who he was.
SPEAKER_01:Yeah. Right. You know? Yeah. And he also didn't have a choice. Yeah. You know, in the condition that he was in. Yeah. If you can say something to Larry right now, What would it be? I would tell him how proud I am of him.
SPEAKER_02:For all the reasons that I mentioned before. I was proud to be his wife, but I was even more proud and honored to be his caregiver. And to see him home. It was the hardest thing I've ever done. You know, I was with my mom. I was with my dad. Those things are hard. This was harder. But I was really proud of him and really proud to be there
SPEAKER_01:for him.
SPEAKER_00:Yeah.
SPEAKER_01:Well, I want to say that I'm very proud of you. I'm extremely proud of you to continue to be an advocate in the ALS and FTD space. I'm incredibly proud of you for having this conversation and for you leaning into the community and helping others that are going through what you went through. Really, it's everything. Thank you. Thank you for that. So speaking about honoring him And moving forward, you are very active in the communities. And tell me about like what inspired you to continue in the space where it always strikes me as so admirable of people who have lost their person, but yet they continue to live in that space. Sure. Because they have a choice.
SPEAKER_02:Sure. Everybody has the choice of closing the book and moving on. I think it has to be my faith. There has to be some reason that this happened. And maybe it has nothing to do with Larry. And maybe it has everything to do with I was meant for a higher purpose. And if I can find any purpose out of his journey, maybe this is it. Maybe I was meant to help people
SPEAKER_00:on
SPEAKER_02:their journey. And maybe that's a calling that I've been ignoring.
SPEAKER_00:And
SPEAKER_02:maybe this is my chance to follow that calling.
SPEAKER_00:Is it
SPEAKER_02:hard? You betcha.
SPEAKER_00:As
SPEAKER_02:you know, it's very difficult when we lose somebody week after week. It's difficult to listen to the stories and the heartache that people go through. But if we weren't there with them and for them, they'd have no one. I didn't have to go through my journey alone and I don't want anyone else to have to go through it either.
SPEAKER_01:Yeah. Even the one lady that you were talking about, that you were talking to, you know, if you think about it, how lost and confused you can be dealing with ALS or FTD, but yet one person, if you have one person that you can bring clarity to, it's really so worthwhile.
SPEAKER_02:We call it the hair on fire year, the year after your diagnosis, when you're trying to figure out what you have to do and in what order you have to do it. And you have all these thoughts overwhelming you. And if it's not for a group of people saying one bite of the elephant at a time,
SPEAKER_00:get
SPEAKER_02:your, you know, go see your elder law attorney, get your durable POA, lock down your credit. take care of your bank accounts, step by step, all of the things that you need to do to not only set up your person to be cared for, but it was also told to me that I'm a young woman. I still had a young son who was in high school. And I thought when we first got our diagnosis, well, I'll just quit working and I'll cash in my 401k and we'll take care of him and we'll do... And I had a very good friend who said, no, you cannot do that. You have a future. He does not have a future, but you do have a future.
SPEAKER_00:And you
SPEAKER_02:have to protect that future at all costs. Yeah. So here's what you do instead. Yeah. I can't tell you how important it is to lean on the advice of others when you're scrambling for a solution to the impossible.
SPEAKER_01:Yeah. Especially someone that's been there, you know, it's worth everything.
SPEAKER_02:Precisely.
SPEAKER_01:Yeah. So I just want to mention a couple of things that you're involved in. You are a part of I Am ALS in a few different ways. One of them is the Artistry of ALS, which I think is an amazing, amazing, amazing highlight feature, whatever you want to call it. Can I tell you where that was born? Yeah,
SPEAKER_00:sure.
SPEAKER_02:So Brandy Trigona, I don't know if you've heard her name, is a woman who's living with ALS and was creating art at the rate of more than one image a day and posting it on social media. And I came across her stuff in one of the Facebook groups and just loved her artwork. And she and I began conversing and she helped me through Larry's, you know, the hardest part of Larry's journey. She knew he was passing and she was creating art specifically for us. And it's not just a piece of art, but it's also what she would say because she knew what we were going through. And after everything happened, I thought to myself, I want people to see her artwork. I want to put it out there. I want to put together a book of her work. Like she's such an incredible person and this is such amazing. It's not just the art, it's what she says. And so Mandy Bailey, who lives right down the street from me, Also an ALS advocate. And you know her well. Saw her artwork in a local copy shop that I had posted. And said, hey, you know what we could do? We could have this virtual art show. We could invite all kinds of artists. And, you know, she's great for ideas. Oh, yeah. That is where it came from. Oh,
SPEAKER_01:my gosh. Wow. It was meant to be. It was meant to be. Definitely was
SPEAKER_02:meant to be.
SPEAKER_01:For sure. And then... Scribes of Strength. Tell me a little bit about that. So the Scribes
SPEAKER_02:of Strength is a group that was started by Juan Reyes, another warrior. One and only. One and only. And I joined his group a couple, well, shortly after Larry passed. It was in the spring of 2022, I guess, 2023, spring of 2023. And And where ALS caregivers and or patients can express themselves through creative writing and through essays. It's another outlet other than just our social media. It's a place to construct all of our stories. And so we meet once a week and talk about our stories and post things. And it's scribesforals.com.
UNKNOWN:Okay.
SPEAKER_02:is the website address if anybody wants to go and read our writings.
SPEAKER_01:Okay, great. And I'll put a link in the show notes for that and a couple of other things that we've talked about. And the show notes can be found on Facebook and the website, both at I'm Dying to Tell You podcast. So Ellen, I really appreciate you sharing for not only all that you're doing, but just who you are as a person. Thank you so much for talking with me today. But before I let you go, what are you dying to tell us? I am dying
SPEAKER_02:to tell you that you are not alone on this difficult journey, that you can be transformed by this journey if you let it in a very good way. If you reach out for help, there are people there who are going through the same thing you're going through who will help you get through it.
SPEAKER_00:People
SPEAKER_02:like me, people like Lori, like I am ALS, the Association for Frontotemporal Dementia. It's too much for one person to handle alone. I know that we think we're the ones that are going to care for our people. These diseases are much too big. for one person to handle alone. So please, lean on your tribe. That's perfect. Your tribe is not always your
SPEAKER_01:family. Right. It's always who you think it's going to be. Yeah, that's true. That is true. Yeah. My sister and I tried to take care of my mom during COVID in her home. I mean, we would cover her 24-7 and we would split the shifts, you know, Yeah. But like you said, I mean, impossible for one person, impossible for two people, sometimes even three. So yeah, I'd love that. Reach out to whatever community is going to be helpful for you. Absolutely. It's great advice. Thank you so much, Ellen. I really appreciate appreciate and admire all that you are doing and the strength and the courage that you continue to have and to help other families that are going through ALS and FTD individually and at the very same time. I know how painful both of those are and I cannot tell you how much you are appreciated. Okay, to my listeners, If you're listening in for the first time, I would love for you to stay connected. And you can get connected anywhere on social media, Facebook, Twitter, Instagram, LinkedIn, and TikTok. See who's coming up and just continue to be a part of this special community. Okay, until next time, know that you are loved and not alone. Thanks
SPEAKER_04:for listening.