Holding On & Letting Go: A Caregiver’s Emotional Journey

"He chose to keep living." - Amy Shaw

When life takes an unexpected turn, how do you find the strength to carry on? JJ and Nat sit down with Amy Shaw to share her deeply moving story raising a large family, including children with special needs, and navigating the heartbreaking journey of her husband Brian’s terminal illness.

From the first signs of illness to the devastating diagnosis of brain cancer, Amy opens up about the raw emotions, challenges, and unwavering love that defined their final moments together. She reveals the lessons learned through caregiving, the impact on family life, and the importance of legacy, hope, and resilience.

🔹 Highlights from our Confession:
 💡 The first signs of illness & the shocking brain cancer diagnosis
 ❤️ Navigating the emotional highs and lows of caregiving
 👨‍👩‍👧‍👦 The impact of caregiving on family dynamics & relationships
 📖 Why Amy decided to share her story in a book
 🌿 The importance of faith, resilience & cherishing every moment

About Amy Shaw:

Amy Shaw didn’t expect to become an end of life concierge. But after years of living abroad, having 10 children (4 biological and 6 adopted), Amy and her husband got the news. He had a terminal illness. Rather than bemoan a diagnosis, Amy and Brian chose to celebrate his life. This is what inspired her Walk the Red program which equips the diagnosed and their caregivers with a powerful protocol to help them end well. Amy says, “we’re all on the red carpet. We all get to decide how we live and how we die.” In addition to being a John Maxwell certified speaker, Amy is a modern impressionist artist who often combines her artistic abilities with her keynotes and workshops.

Social Media:

• Website: walkthered.com
• LinkedIn: https://www.linkedin.com/in/amy-shaw-295270347/
• Facebook: https://www.facebook.com/groups/supportforchristianspousesandcaregivers
• Instagram: https://www.instagram.com/amyshawart/

🌟 If you're a caregiver, a loved one, or someone seeking inspiration through adversity, this episode is a must-watch. 

Kindly like, subscribe, and share to support more real, unfiltered conversations on the caregiving journey.

#Caregiving #EndOfLife #FamilyResilience #ConfessionsOfACaregiver

Transcript

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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. If you like pina coladas. We talked about this before we got on. Caught in the rain. If you're not into health foods. you have a brain. That's it. Okay, we gotta stop now because I don't know the rest of the songs and I don't know if we have to have that licensed. that's possibly true. But it's still singing in my head. You know what? is. Edit. Andy. Andy's our producer. We love you, Andy. We don't want to go to jail, Andy. Please don't let us go to jail. We don't look good in orange that way. Especially JJ, your red hair. You do not look good. Are you making fun of my red hair? Nope. think it's beautiful, but I think UT orange does not work for you. And that's University of Tennessee, not University of Texas. Texas is a bit more burnt orange than the bright, shiny orange of the volunteer state. That's right. Oh, anyway. All right. But this is not a podcast about orange and your hair. Yeah, that's true. It's not a douche. It is not. We, it is a good day to have a podcast. Gosh, man, and we have a powerhouse caregiver today. She is awesome. Like she's my bestie. She was my best friend first. They're always your besties. And I'm first. usually I would like Amy, if you would just be my bestie when we're done, I would really appreciate that. I don't have any besties because I like steals them. I have them all. wait, let's talk about Amy. OK. Tell our tell our listeners and our viewers. would love to share about Amy because she's not my bestie, but she's going to be. She is your bestie because I'm the comment. It's coming. Thank you, Amy. Look at her. is. There's the voice. There's the voice. So today actually, to be very serious, serious time, Natalie, suck it up. Today's guest is Amy Shaw and she is a woman who proves that when life hands you the unexpected, you roll out the red carpet anyway. Amy's journey is absolutely remarkable after years of living abroad and raising 10 children. 10. That's double digits. Yeah, double digits. She and her husband, Brian, faced a new chapter. Brian was diagnosed with a terminal illness. But instead of letting the diagnosis define them, Amy and Brian chose to celebrate life. This mindset became the inspiration behind Walk the Red, a program Amy created to help those with terminal diagnosis and their caregivers end well. Amy puts it simply, we're all on the red carpet. We all get to decide how we live and how we die. Now Amy's caregiving story started long before Brian's diagnosis. did. And Amy didn't see it that way. She and Brian were caregivers. They were raising children. They had six who they adopted internationally with special needs. I love that. caregiver for a long time. She has been a But when Brian's cancer returned, caregiving took on a whole new intensity from a research champion to a networking queen. Amy did it all. Now I've got dancing queen in my head. know. Cute and sweet. Sorry. Okay. And as Brian's life came to a close, she learned what it truly meant to walk alongside someone in their final act. I love that. It's like a love story. It is. It's a love love story and family stories. And Amy, we are so glad to have you here with us today. Thank you. Thank you so much. It's honor. I'm gonna tell you guys, this is one worth, like everybody has different backgrounds if you think about it, and Amy is an artist, and so her background is beautiful. You get to see her artwork too, as you're listening and viewing the dog. It's the dog artwork behind you that had me. I'm like, that's a happy dog back there. your boudoir. I love that. Amy has a beautiful place. Amy, thanks so much for being with us. We're happy to have you and so privileged to get to hear your story. know, I know when we taught that I just left feeling so good and even in the hard, there is so like the lessons that you learn. You never stop learning. And I feel like Amy's going to share that with us. Amy, let's start. with, let's start in the beginning. You were born. then, you know, skip to the good part, but give us a little background about where are you from, siblings, you know, I love birth order. So just a little bit and then get us on up to that love story. Sure, yes. I was born in B. I was the first long-awaited child. My parents, who were college sweethearts from Ohio State University, so I was born in Columbus, Ohio. I grew up in the same house. In fact, my mom is still living there. My dad has since gone on to glory, but my mom is still living in that house where I grew up. And then my mom had a blessing child where we adopted my sister, domestic adoption. then surprise of all surprises, my mom on a vacation in Florida found out she was expecting my brother. So my brother and I are seven years apart. My sister and I are about three and a half. So. Launch from Ohio. Exactly. And it's so funny, I've known several people who chose to go the adoption route when they were unable to conceive and then lo and behold, an oopsie baby, like a surprise blessing baby comes right along. And have friends of ours that have done that. So you grow up a bug eye. Back up. She's the oldest. I just want to focus on that. You're the oldest. I did notice that she was the oldest. We want to call that out. Right, BFF. Just missed the fist bump through the camera. think that's spelled it out. It's okay, it's okay. I'm used to being yellow mustard. so, but you everybody puts mustard on hot dogs. so you, you grow up, you're a Buckeye. Are you still a Buckeye? I am. I'm in South Carolina right now, but I am absolutely a Buckeye. Very proud of my team who won the national championship. right. The Ohio State, we're like giving props to them. They did a great job. Again, not a football podcast. So you grow up and then what happens? You're 18, you're getting into adulthood. When do you meet Brian? My parents and his parents knew one another before we were born They were both attending the same church and then you know life took Brian's parents to California He was actually born there then they moved back and they ended up settling in the same small suburb of Columbus we ended up going to the same junior high and High school together, but we didn't know it. So I was two years ahead of him and so In high school, our parents recognized each other. So they hadn't seen each other in years and said, Hey, we should introduce our kids. so, and Brian was quiet. He was a farm boy. He never did anything at school. He was not in athletics or anything. I was bubbly and with friends and I was off. And then like later we went to a pretty Pretty big high school, like 800, think, in my class, in each class. And so occasionally I would see him and he was super, super blonde and tall. And I would see him and think, I think I'm supposed to know that kid. But I remember his name. I'm older, I'm a senior. So yeah, fast forward. I go to college. He goes to college. I'm not at the same school, but I went on a mission trip one summer. When I came back, my parents were like, we're going to a new church. I'm like, okay. That was kind of out of the blue. And at that church was Brian and his family. And so I went to the college and career class and there he was. And We were friends in there for like three years and I never thought anything. He actually, so that mission trip, I went to Haiti and he had also gone to Haiti. So even after we're like back in our colleges, we wrote, this is pre internet. We wrote letters back and forth to each other about Haiti, not having any idea we were each other's love. Like he is the love of my life. was the love of my life still is. And I was his and we didn't know it. And so finally in nineteen, what was it? Ninety five. I was waiting on a visa because I was going to go be a school teacher in Indonesia and my visa kept getting delayed. And he was working at a dairy farm and he grabbed a cow because he was mad at her and she kicked him and broke his arm so he couldn't work. So he was like, didn't have anything to do and I remember him being like, I can help you pack. And I was like. with one arm, that's sweet. You want to fold my underwear? do you want to do? But he at some point in there asked me out for a date and the rest is history. Like we knew we wanted to marry each other, marry each other within a week. But I had committed two years to be in Indonesia. And so really I think that separation and we wrote letters. And that was like the dawning of email and you remember dial up. yeah. Yeah, we all know it. All the young people are like, what is that noise? Yeah. When is Do... So, and it was extra like lengthy to connect when I was in Indonesia, because I was in a really rural area. And so we would try to connect maybe and send an email, but really we relied on letters and he sent me letters and it would take three weeks to get a letter back and forth. And so, and I actually got sick. I got very, very sick with two different types of malaria and I only ended up staying five months. came home, recovered, and he asked me to marry him. and we got married that fall. love a love story Jay letters runs my Bob. I love that Bob and Gretchen. Yeah, they were love letters. I love letters. I love letters Okay, so you guys get married and you know, it's interesting how God's plan really does what it's supposed to like I can see it like oh, isn't that neat? I love that and so so you guys get married and you guys Now, do you have, because you have four biological children and then you have six adopted children and your mom to all 10 clearly. And so those are just technical terms. You're the mama. I know that you had mentioned that you really never saw yourself as a caregiver, but how did you, did you have your biological children first? How did that, the choice to have be adopted? Because we're going to, we're going to talk about Brian, but I do want to talk a little bit about that, the adoption side. Yeah, we did have biological children first. And our intention was to have a large family. I wanted 10 children. He came from, he was also the oldest. He was the oldest of two and he thought maybe four would be good. So we decided to meet in the middle at six. And so we tried to have children and it wasn't happening fast. That was kind of a shock, kind of a surprise. I guess I shouldn't have been too surprised because my mom did struggle with that. True. But we did have, we did across nine years, because the story can take too long, but it took nine years and we got to four children. And I had lost a significant, I had lost two babies and then we had a full term, 39 week, stillborn son. And that was so devastating. really, I wanted, I didn't want to end on a loss. We have this weird pattern where it was like, have a baby, lose a baby, have a baby, lose a baby, have a baby, lose a baby. And I didn't want to end on lose a baby. Ocean or rose, lower low-cost. Yeah. And it took another two years after that loss to become pregnant again, but I finally did. And so we ended at four children. I really just still wanted to have more, but I knew that I knew that I could not do that again. It was just so deeply emotional. And so you decided to adopt. not just adopt, not just adopt, know, hey, want to... So many people think of adoption and they think of healthy little babies that are teeny babies. I've worked in the foster care system for 25 years. And the children who are the hardest to adopt typically are older, they're teenagers, or they have differing abilities. And so you and your husband decided to do something different. Something different, yeah. Well, Brian had been listening to a podcast and kind of getting educated about the need in sub-Saharan Africa for adoptive families for these babies because the AIDS epidemic had just wiped out that middle generation. so all these children and babies were going and living with grandparents, and the grandparents weren't going to maybe live very long. So the orphanages were just very full. And so he asked me, what do you think? Would you consider international adoption? I don't know. The Lord had been doing his own work on my heart. And so he called me from work on a Monday. And by Wednesday, we were starting paperwork. We don't FaceTime. We really don't. that I'm very much a decision maker. Yeah, I don't need to think about it. JJ is like gonna mull on it chew on it. Almost like I call you a cow. But know cows have four stomachs and they chew on it for a while they come on and moving on. So six kids six additional babies over what amount of time how long how long did you guys So we brought home our sons up in 2011 and we brought home our last two girls in 2016. So it was five years. We brought six kids from you. It was really crazy because we didn't have, we didn't have, you know, tons of money sitting around. we fundraised and. That's really how my art got started because, I was always creative and stuff and I always loved to paint, but it wasn't any good. And I started auctioning off art for one of our daughter's adoption fees. And I thought, I was really convinced that people were just doing this to help her come home. And it really wasn't very good. It really wasn't. We appreciate all those people that got this baby home, this daughter home. So I love that. I love that your faith, that you all allow your faith to lead you in so much. I love to hear that. Well, and also you had mentioned to me that the children that you chose were children that had differing abilities. Yeah, yeah, we did and you know some of that was interesting so we had always wanted to go back overseas we lived overseas in that period of nine years where we we were only there for two years, but during that time where we were building our biological family and We were planning on a career of mission work and when when our son was stillborn Everything shifted and we ended up going to a different part of Ohio to live. it just so many things. It felt like our lives shut down. I remember Brian saying, why would God put us on a shelf? Why would he put us and say, you know, we're so willing to go, we're so willing to do this. And he's like, Nope, I'm just going to set you up here on the shelf. And we struggled with that a lot. we really, we tried to get back overseas. We tried to get back overseas and the door would just close for one reason or another all the time. And I remember after we brought Zeb home thinking, well, first of all, I had fallen in love with this photo of this little boy and he had a condition that I couldn't even pronounce and now I can, I've worked at it. But I. I remember suggesting like, what if, if we can't go to the mission field until, you know, maybe we're done raising children, why don't we use that time to give a child a family? And this was, you know, a boy in China who had, you know, malformed limbs and in that society, you know, he's, he's not able to care for his family. You know, back then you could only have one child and that's why there were so many girls in orphanages in China. But when a boy was born with something that would inhibit him from caring for his parents, you know, they would kind of try again for a healthy child. And so he was going to grow up in this orphanage. And I remember just saying, you know, if we're not able to go until later, then maybe what we want to do is do this and he was on board. really I remember he coined a phrase, I'm sure you've heard it. We'll knock on the door with a feather. You know, that famous, famous phrase that everyone says every other day. Like I was like, what does that mean, Brian? What do you mean? What will knock on the door with a feather? He's like, well, we'll just approach it and knock on the door. And if it, if the door pushes open with the feather, then we'll know that we're supposed to do it. And I was like, Okay, I'm game for that. I've never heard of that Amy. I've never heard that. was like, was like, I've never heard that, but it makes sense. Well, not on the door with a feather because it's, it's almost like it's like, a little, I'm a little nervous about it, but if it's meant to be the door will open. And I love that. This will be the beginning of the entry into the colloquial usage of knock on the door with a feather. Perfect. gosh. Yes. And the door flew open. And so we brought him home and he is taller than me now. He was not, I think he was two years old when we brought him home and he is 14 and taller than me and just doing amazing things. Love that. I love that. All right. Well, we're past our little time. Let's take a break real quick and we'll jump. Let's jump in because we're going to, we're going to talk. We're going to have another, we're going have another podcast about the adoption side because it is really is an entire, entire conversation. We'll be right back. All right, everybody. We are back with Amy Shaw. We're dancing. Yeah, we forgot to take our dance break. Dance Dance break. So she's been a caregiver for so long. If you missed that. 10 minutes go back, you know, because you got to listen to that. But she said they're taking care of, and Brian are taking care of 10 children of varying abilities. but something kind of comes up. You're surprised by an event. So what happens with Brian? So it was March morning in 2018 and I had heard Brian say that the guys at work had the flu and I think we'd been married maybe 20, 22 years at that point. He had never, never taken a sick day. You know, he was this, I'm gonna push through anyway. So he came home at 9.30. You know, this was very odd and he went to bed and I thought, that's so strange. And I had preschoolers, I put them on the bus at 1230 and I thought, I better go check on him. It's been three hours. He also was never a napper. He never liked to take a nap. So everything was really bizarre. But I, again, I thought, well, he must really have gotten hit by this terrible flu. And when he woke up, he really struggled to, to speak. like he was saying words, but they didn't make sense. And he was very frustrated that he couldn't communicate. He knew that he wasn't making sense. And, and he would bend over and he would hold his head because his head hurt and he was praying. And when he would pray, he was making sense. And then he tried to talk to me again. It was weird. And I just kept walking out of the room, just like trying to shake it off. Like what is happening? This is so weird. So Brian was very funny, but this was not the kind of joke he would ever ever do. So I would come back in and be like, okay, let's try again. And he would just do the same thing. And I told him like, if you can't knock this off, I'm gonna have to call the squad. And he just, at that point, he stood up and he put his hands on my shoulders and he called me our daughter's name. Like, listen to me. And I was like, what? Like, I was just so horrified. So I called them and I actually went downstairs to wait for them and I'm pacing and They came to the door and I'm explaining and I bring them up to the bedroom and he's changed his clothes and he's sitting there on the side of the bed. And I'm like, oh, okay. So actually you're fine. Like what? And so they came and they did an assessment. They thought maybe a stroke or something. They rolled a stroke out. And he was so fascinated. So he had a biology degree. He was very smart, and he was so overly fascinated by the blood pressure machine. And he would ask them, what is that? How does that work? And they would tell him. And he would ask it all over again. Well, what is that? That is so, wow. And I was just horrified in the background, just like, what is going on? What? And. They decided to take him to the ER. They wouldn't let me ride with him. So I remember going into the bathroom and looking at the mirror and just saying, what, what is going on? Like, what do I do? Do I put makeup on? What do I do? And finally like, okay, I need to go. I need to get in my car and go. So by the, you know, maybe I don't know how many minutes elapsed. By the time I got to the ER and walked in, the doctor met me and he was like, your husband has a mass in his brain. I was like, what? Just like the world stopped. Like, wait, I can't even, like, he was super healthy. He was just, he was always up early exercising. I mean, he, he loved fitness and just life. I mean, he was an active person. He was so thin, you know, he was muscular. Just, he liked his cookies, but otherwise he ate healthy. It was just like, what? And so they transferred him to a bigger hospital, but in in between there, you know, we we called the kids out of school. And I actually my oldest daughter was getting on a plane that day to go to Argentina and she was going to go do some work down there. And I called her. She was in Columbus. We were about three hours away from that. And I said, hey, I don't know. I'm sure everything's fine. Dad's in the ER. Actually, I called her before I heard that there was a mass in his brain and said, I'm sure everything's fine. I honestly thought he was maybe having a mental breakdown or something. I mean, we had 10 kids. had a cow who was, we had a two acre little hobby farm. And we jokingly called her the stress cow because Brian was so stressed about what if this went wrong or that. And he was getting up really early milking her and all this stuff. there was a lot of stress in our lives. And so I really just kind of thought he just kind of had a breakdown. So I told her, think you can still go on your trip, but I don't know. And anyway, so she did not go. She came home and all the kids were taken out of school. And I remember our pastor met us at the... emergency room and he told me before the kids arrived, because I had a dear friend who went and collected all the kids and brought them to us. I remember him saying, you have the opportunity to, to shape how your children are going to remember this day. They're always going to remember this day. You have the power in how you share this with them. And I haven't thought about this in a while, but it was a really, I was so appreciate him saying that. And so we brought them in and, know, I'm sure they were, you know, very frightened and why in the world are we out of school? Why are we at the ER? Why is mom, you know, where's dad? Right. And so having to explain and you, we didn't have answers. so fast forward, he was taken to another hospital. He was, we were given some hope maybe because we pressed for it that maybe there was a chance, there was a 3 % chance that this little mass in his brain that they were going to remove was just an abscess. How an abscess would have gotten there, I don't know, but that was the hope that we clung to. And we had prayed in all of our social media, we'll remember that, that we were praying that it was just an abscess. And I was waiting through that surgery and thinking, okay, he's going to come out in 20 minutes and say, it was just an abscess and we can go back to life. But the surgery went on and on and on. And he came out and he said, well, it was grade four. I'm like, what, what is grade four? What? It was like, well, I thought it was only going to be grade three based on the MRI and all that, but it was grade four. Like, what does that mean? He's like, well, he has primary brain cancer. And I was just so like, just like someone slapped me back and forth and. So we had to wait for the pathology to come, but he was right. He knows what he's doing. And Brian had the most aggressive possible brain cancer. And when they did the DNA of the tumor, he had the most resistant to treatment. And they said, you know, if you don't do treatment, maybe three to four months. If you choose to do treatment, he might have six to 12 months. And we're just like, The theme is what? Like you don't even understand. Yeah, it's a shock of a shock. Like we were we were busy living life like no. Well, and I'll tell you this, Amy, when we got the cancer diagnosis, I remember thinking, and this sounds really selfish, but it's true. I don't have time for that. Like we've got a lot of other things that are going on. We've got some life living we got going on. We do not have time for cancer. It sounds like very similar. Like you're like, no, we're busy. We've got some kids and we've got some other plans. We don't really have time for, you know, terminal illness. Like we'd like to. I think that the whole thing was going to be shut down, like all of the life that we've been doing. and I don't know at what point I started to think, no, wait a second. Wait, no, I don't want to be left to do this by myself. That wasn't the deal. That wasn't the plan. I never once considered that. but we made a choice. So the doctor that removed the staples from his surgery. He did some reading and he was the one who gave us that final, like, yeah, you might have six to 12 months. And when we left that hospital, I remember walking out, holding his hand in the parking lot and just squeezing it and saying, okay, we're going to make this the best six to 12 months of our lives. Because what else can we do? What else can we do? We have to, we have to do this. And You know, so we had difficult conversations with our kids. told them what was going on. You know, our youngest child was three. Our oldest was 18. And so we had quite the gamut of ages, but I remember sitting around on the floor in a circle and saying, we don't like this. We are scared, but we know that God will take care of us. We don't know how. but we're confident that he will. And so this is what we're doing, you know. Okay, this is I'm gonna take a break here Jay. Okay, because this is and then we're gonna come back in because we're gonna find out what happens over this next window of time. Okay, and how it impacts you Amy? We'll be right back. All right, everybody, we took our dance break because everybody took a little dance break. We danced it out. And we are on a heavy topic, though. We are. But Amy has this spirit about her that I'm just, I'm sitting here and all I've said a lot because I'm just, listening to the story and, but we're back. Brian has, they have gotten basically a terminal diagnosis and, but her, I guess her comment to her husband at that. at that time was we're gonna make this the best six to 12 months that we've got because the doctors has said, this is it, this is what we've got. Tell me in those moments, in those times when you're sitting there with the kids, you're talking about how bad this is, but you are that link for them. Like this is mom. She's the mom of is stable. What is going through your mind? Where are you at? think I'm balancing, know, I'm reading them, I'm reading the room, I'm looking at their faces, looking at the different ways that they're reacting. And you got to remember six of my children have already lost both of their parents. This is big. And you know, the four biological are staring at something that, mean, none of us, none of us knew what was coming, you know, and there is a lag between surgery and the actual diagnosis when that pathology comes back. that is such a scary window of time when you're like, what if it's this, what if it's this? And it was the worst of all the worst things. And I don't, I think, you know, I was reading the room and I was just thinking, God, you're gonna show up. I know you're gonna show up. I don't know how. I really wanted him to heal my husband. Like, just take it all away. You know, there are so many days that I wanted this to just be a bad nightmare that we were in. It was a nightmare, but it ended. I don't know, maybe I should stop answering that question at that point. Well, I'm not sure what I was really going to say other than I knew that God was going to come through for us, but I didn't know how. And it was just a matter of walking it out. And it's true. It's the ask that we have versus the answer that we get. And they don't always match all the time. And that's the hardest part. And I think in asking and praying for another friend of mine, you wonder why does this person live versus why this one person doesn't? Why did this happen to this person versus somebody else who's not been living a healthy lifestyle? You start, that's where faith really comes in and it can impact. If you go too far down the rabbit hole, you start to lose your faith, you lose your hope. And without hope, for me, there is no... It feels hopeless. And so you guys decide, we're gonna... Well, and here's the thing. mean, you're caring for him and you're caring for the children. And how does this... you know, what's the impact because do you have moments for yourself? And what are you saying to yourself really? Like, do you want to just run away and go hide? All the time. But no, seriously, I think, you know, in the beginning, Brian was very able and he, so first of all, spoiler alert, he lives 37 months instead of just six to 12. And now of course we didn't know that. every day we didn't know if that was the day that, you know, the other shoe was going to drop or not. Because they always tell you it's going to come back. He ended up having two craniotomies to remove the tumor and then it grew back. then both times they got a hundred percent of it. I'm like, great. That sounds so encouraging, but the type of cancer that this is, you can't see all the fingers and all the cells that are spread out. And it's such a fast aggressive cancer that it grows back. there often is some time I have a precious friends that have, they just celebrated their 10 year mark of when he was diagnosed. Um, and I think it's less than 5 % live to be, you know, to meet the five year mark. So he's really an outlier. Um, but back to what I was saying, my husband was, he was very, he did a lot. And so even during most of the time that he lived, he was making hot breakfast, like I mean, so he never went back to work. And so the kids were like loving this. Dad was creative. He was making sourdough bread every day. He was coming up with inventive hot breakfast, which the kids are not getting anymore. I do not make breakfast for them. Like, hey, you're on your own. But so, you know, to say that I was caring for him, the type of care I was doing was researching, was, you doing the networking of other people that are battling this. I don't feel like, you know, I think in my head, I think of a caregiver as the way it was at the end of his life. And when he was having seizures all the time and I always had to have rescue beds with me and you know, where's dad, where is he? You know, we always had to watch for where he was. But the bulk of that time, we were still being a married couple. were being a... a happily married couple who had to go to Cleveland Clinic every couple of months to do a brain MRI. And I remember Brian saying, if people didn't tell me I had brain cancer, I wouldn't know it. So interesting. That is just so interesting. Well, he refused to be defeated. He's like, I'm going to live my life. And I think that that would be. It's almost like blissfully ignorant, and I'm not talking about your husband, I'm just talking about like when you like he's right. If nobody had told me I had brain cancer, I just just keep on keeping on like it simply is what it is. And that's what it seems like. He had like, what Sue Ryan talks about is this radical acceptance and he chose to keep living. Yeah. That he had. you know, I know that you said, I don't see myself as a caregiver until like, because the traditional sense of what people think, because they think of it as technical, like physical action of caring for someone, like exactly what you said, but the beauty and the hard part about caregiving is that there is no definition. There you are you you probably went in and out of caregiving with him. And supporting him through research through helping him with certain things and at times it was probably concurrent. I'm a wife and a mother you're not concurrent on anything you're like 50 concurring your 50 different job titles at the same time. Yeah, I do remember a time like shortly after in that first year that he had some cognitive changes, but we didn't know it. so there were just some times where, you know, he was, he was, and eventually I found out that when he would read something, he wasn't able to comprehend when he was reading and that kind of a deficit. It ebbed and flowed like he's. were saying and so, you I would need to kind of take over that. you know, in fact, that's how we found out that he wasn't comprehending things because he had just always taken care of the mail and read all those technical things. And I just assumed he was doing that like usual because everything else was kind of back to normal, but he was missing things. And that was hard. So I know that I'm still like in amazement that you, 33 years, I just love that when that happens to doctors, we're like, you were wrong. Months. Months, rather, sorry. It comes back. this is really, what you say is when your caregiving begins, but I think it's been going on for a long time. Tell us about that. it had felt like I actually painted this feeling. It felt like we had a dragon that was just floating kind of behind our heads and he was this dragon of cancer. We didn't know when he was in a kind of get the power to kind of leash up and, and lunge down at us. And it was almost like you'd, do I feel the hot breath on my neck? Like spin around like, no, there's nothing there. You know, Like it would vanish. And so every time we went, so there's a term that anyone with glioblastoma knows is called scanziety and maybe other people use it too, but there was such legitimate scanziety. We would know that that MRI was coming in March maybe. And the closer we got to that date, I found myself like pulling away from Brian. I would find stupid reasons to be angry at him. And like, totally apart from my consciousness, I would find it was a defense mechanism. my self subconscious said, if you're angry at him and he dies, you won't miss him as much. and so as those scans would approach, those MRI dates would approach, I found myself, you know, just distancing myself, feeling angry and Eventually I figured it out and I was like, Brian, I'm so sorry. This is what I'm doing. I'm not trying to. I'm not mad at you. I'm scared, you know? And so we would drive the two and a half hours to Cleveland Clinic to have this thing done and you wait through it and you have to wait to get the results and they would be clear over and over and over and over they were clear. And so that day that they finally were not was like almost like, okay, I'm ready. You know, it was almost like standing at the base of the mountain being like, okay, let's climb this thing because it was so hard to live in that in between stage. And that was where God told me I want you to write a book. And I was like, yeah, I don't know how to write a book and I'm a little busy. I don't know if you know what I'm doing, God. Really? Did you see that? Did you see what happened? But I do remember like thinking and praying through that. Like, no, I feel like it's important that I write because I'm in this window. And that's what I thought I would call a book, something about between diagnosis and death, because that's such a hard, hard, unknown. You don't know how it's going to go down, but you've been told it's going to be bad. You've been told it's going to take his life. And you just like... How does this how does this work? I don't know how this works and so I thought I need it's important that I write now and and so I did a lot of not a lot I did some Writing of emotion like and and I did include those in my book but I didn't I couldn't possibly write a whole book at that point and Anyway, I was saying something that I wanted to come back to you I can't remember that's okay JJ has a concussion too. But no, it'll come back to you. It'll come back. You know, I think this is, I can't even believe our time. Our time is like we're getting towards the end of our time. And so I wanna ask you about that because, know, when Brian ultimately passed, he passed, when did he pass? It was April of 2021. And so did you write the book after Walk the Red? Yeah. Go ahead. And so what did you want to say in Walk the Red? What did you want other people who are dealing and walking this journey where there is no final good answer that feels like a good answer, but the reality is we're all going to die. What was your guiding guidance to people? book is actually called Navigating Goodbye. Sorry. That's okay. Walk the Red is the coaching program that alongside people to help them on a one to one basis. But yeah, I think I wanted to give them like, hey, here's a playbook. When we were going through this, was kind of like, what do you do? I'm so overwhelmed and shocked. My life was not easy beforehand, but now you lay this layer on and I don't even know what to do. And if I'm honest, I just want to stay under the covers and cry. Yes. I don't have time and I've got people I have to get up and get to school and you know, I have to keep going. So I've created a book to give people, here's what you can do. You know, here's the section of... You know, here's a mental mind shift on walking the red carpet to the door of eternity and to understand that there's more to life than just this human experience that we know, this bodily experience. That impacted how we lived as well. And it's also, here are some shortcuts in the medical field. Here's some shortcuts about clinical trials, here's how to understand clinical trials. I didn't know anything. I didn't know that hospice wasn't a button on my phone that I pushed because everyone says, well, we had to call in hospice. And I just thought it was like 911. I didn't understand that there are companies and they do different things and they offer different plans and there's different services. And if you go with this one, you may not get the same service as someone else might. So I just didn't understand any of that. explain some of those things. And then I've got a good section in there about how to leave a legacy because that's something that I do want to make sure that we talk about is the things that my husband did to leave a legacy, to spend time with each of us. He dated each of the kids. He left us. He always, our whole marriage would leave me love notes around the house. He would study where my little habits were, you know, and he would, there would be a little love note in the coffee, you know, in the in the coffee beans or something. He was just always doing that. And so he continued to do that. I found notes later and then he spent time in the mornings when he would get up early, even in the very end of his life where he was writing letters secretly to all of us. And he folded, I had 71 letters that he had written and he had folded them all up like we did in junior high and high school. And would pass, you know, remember those. In fact, when my kids got them, they were like, how do I open this? I'm So he did that and then, you know, some of the things that we, you think, okay, you're dying. What are those things on your bucket list? What do you want to make sure and do? And Brian was like, Hey, I'm going to get everything. I am about to go to heaven and have everything. What do you want to do? I'm I want to go to Paris. So that first year, Brian took me to Paris and we essentially had a second honeymoon and it was absolutely my favorite trip I've ever been on. It was so great. But he spent time one-on-one with the kids. He would take his phone and leave voice memos for the kids like, I'm at your track meet. I'm just so proud of you. I just want you to know, just stuff like that. then we were blessed to be a family chosen to do a retreat with inheritance of hope. Brian ordered a legacy video for the kids an hour long. And that was just such a treasure. And then one day we were sitting in our bedroom, weepy because we cried every day. That was part of it. and he told us, he was like, I'll do anything you guys need. I'll just do anything you want. And so my oldest daughter, Jencie, she had been thinking about this. And so she took that opportunity and said, dad, will you walk us girls down the aisle? I'm so sad you're not going to be there for our weddings. And I think she had something really simple in mind, but we, we did it really big. Our church helped us do this. They really are the ones that, that made this happen. But Jency wore my wedding gown. Annalee, next daughter, wore my mom's wedding gown from 1967. And then our younger daughters were too small for wedding gowns, and so they wore beautiful white dresses. And then they all had veils and flower shop made flowers for us. A friend made a wedding cake for us. The church decorated the church. They provided videographer and photographer and Brian rented a tux and he walked each of our six daughters one by one down the aisle. And that was nine weeks before he passed. So he wasn't feeling great, but he and his, his tumor where that cancer was growing was over his speech center. And so they kept saying, he's not going to be able to speak. He's not going be able to speak, but he kept being able to speak. And it was such an amazing answer to prayer, but he prayed for each of our daughters. for their future spouses, for their weddings, their marriages, and all of those are recorded. In fact, my daughter gets married in five months, five months from today, the day that we're recording this at least. And so she's going to be able to play that video and precious moments, know, bittersweet, but just such a treasure that we have those pictures and. It's not a typical picture to have a dad with six daughters in bridal gowns around him. But that doesn't matter. Because here's the thing. It doesn't matter if anybody else understands it. They do. So it's we're going to do quick sister questions. And, I'm going to I'm going to ask one before I did the last one. Yeah, go ahead. Because I see you over there crying. yeah. Now, go ahead. I'd already heard this already did my cry. my God. Because I think it's the most beautiful thing, because this is different than our normal podcast, because the thing is, is you all really cared for one another. He really cared for you as much as you cared for the family. And it was such, you're such a team and it's beautiful. Let me ask you this, cause I asked you before, like what tips would you give to people? What advice would you give to people who are caring for someone with a terminal illness? I would say because you don't know how the end is. I used to lay in bed and worry about how I was going to do the end because he was so self-sufficient for so long. I remember a dear friend of mine was caregiving for her husband with ALS and with ALS you have to do everything for them. And there was a time that she mentioned brushing his teeth and I don't know why, but that freaked me out. I'm going have to brush his teeth? Like. And I remember laying in bed and he was asleep and I just remember churning and like, how am going to do it? And how am I going to do it? If you can not give into those kind of worries and live in the moment. Because here's the thing, when you get to those end days, you don't know how the grace of God is going to come and meet you. You don't know who, in fact, I was just thinking about this. I had people from our community. volunteer to spend the night on the couch in the room where Brian's hospital bed was so that I could get some rest. And those were, that was the last week of his life. Several women volunteered to do that for me. And you know, one was a nurse, but I don't think they were, maybe they were all nurses. I bet they were. and they weren't paid to do that night watch. They just volunteered and I couldn't have anticipated that. You know, I could have lost a lot of sleep a lot more than I did. So my advice would be you don't know how the end is going to go down. So don't spend any energy, any emotional energy, and you just have to be disciplined and cut it off and say, Nope, I'm not allowed to think about that and live in the moment and celebrate the moment and do what you can do with what you have. You know, and I think about people. I've had somebody tell me recently, you know, we're just hoping that he can live long enough to see our son graduate. And I thought, you know, maybe in the same way that Brian wasn't there for our daughter's weddings, you know, maybe the son needs to put on his cap and gown and take some photos with his dad, know, make memories while you can. Yeah. Go ahead and do it now, you don't have to wait. I start usually the story of my mom and dad because I always say it's a love story. So tell me in the time that you and Brian had, because I do believe there's so much love in your story, tell me what in that time you learned about love and preparing for that end. Tell me what you would share with somebody else and spending those final days together. We did really love each other deeply, deeply. And in the beginning, I was so disappointed that love was over and marriage was over. And I remember thinking, my marriage is over. Like, it's so sad. It's so sad. And it was my mom who said, no, Amy, you completed your marriage. Like your marriage vows were until death do you part. You completed them. And boy, have I hung on to that. That is such a... Wow. Wow, that gives me cold chills. You completed it. You completed it. That's wonderful. marriage. And, and, know, I, I'm sad to think that there's not marriage in heaven, but there's, there's a good reason for it. I don't understand it, but I know that I'm going to be with him again. and you know, that's a huge part of my hope is that this isn't over. I remember when we buried his body and. You know, everybody was there and I was like, Hey guys, this isn't the end. He doesn't. Thank you forever. And when I made that tombstone and you let's try it. You always try to make it a little bit lighter. Like, well, it's not like this is. Carved in stone, like, okay, well, actually it is. But it is still a temporary thing. Your tomb, your body being dead. It's a, mean, for a believer in Jesus. So if you don't have faith and it is a different story. But according to what I believe. This is a temporary holding place and it's all going to get a whole bunch better really fast. And I just have this tiny little window of time. And that's really what's motivating me now is I have a tiny little, mean, I'm in my fifties. I don't know how long I get. I don't know, but I have this tiny little time that I can influence the world and I can spread hope and uplift and carry. Like that's, that's all I want to do. because it's all gonna come, like all this good stuff is coming and I can't wait. It's going to be amazing. Oh, I love that, Amy. I have one question and it always ends on a light one. It's always a light question. What is your favorite guilty pleasure? What is the one thing that you do for yourself just for you? I know, I'm like really working hard to not eat sugar and not eat, I'm just, okay, so it can't be that, like is it painting oil? Maybe it's painting, I don't know. I love hot baths, I really love a good bath. Our sister loves it. I swear she is a prune. She was a prune in another life. so not a prude, a prune. prune. She was a complete raiser. wrinkled. Yeah. Just wrinkled from just relaxation. Amy, thank you so much for being with us. My gosh. mean, all my wisdom. I'm sitting here like living the moment, leave a legacy. The dating like. Living here in the organization Inheritance of Hope, I hope this, know this will bless so many people and rather the person that you're caring for has a terminal illness or not, the lessons that you've learned have nothing to do whether the person is going to pass or they're going to live because that's the thing Jason and I have had to do. We've had to adjust our life and we try to live as much today because we don't know what tomorrow brings. And you'll never regret those days that you spent nationally. You'll never be like, well, I wish I had just worried. I'd watch more Netflix. Yeah. mean, caught up on that show, you know, you'll never say that. No, no. Thank you, Amy. Thank you. love you. You are forever sister. Forever sister, ma'am. Guys, thank you so much for joining us today and for listening in. And until next time, until we confess again, we'll see you next time. Bye bye. Well, friends, that's a wrap on this week's Confession. Thanks so much for listening in to the podcast. But before you go, please take a moment to leave us a review and tell your friends about the Confession show. Don't forget, visit our website to sign up for our newsletter as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest, and Twitter. You'll also find the video recording of all our episodes on the Confessions website and our YouTube channel. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a Reluctant Caregiver have taken care in selecting the speakers but the opinions of our speakers are theirs alone. 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