Dad, Devotion, and Dancing: Finding Joy in the Hardest Goodbye

This week’s episode focuses on Christopher “Chris” Schuler—his journey as a son, father, and most notably, a devoted caregiver. Chris, adopted from Colombia and raised in a loving, close-knit family in New York, reflects deeply on identity, belonging, and the power of chosen family. His parents’ move to Rhode Island marked a period of even stronger family bonds, which would later prove invaluable when his father was diagnosed with glioblastoma, an aggressive form of brain cancer. The diagnosis and subsequent caregiving experience were transformative for Chris: he describes the initial shock, the emotional toll of shifting immediately into crisis mode, and the unwavering determination to care for his father, drawing strength from childhood lessons of love, attachment, and resilience.

Throughout his father's illness, Chris balanced being a parent himself, maintaining his job, and providing near-round-the-clock care. He candidly shares the physical and mental challenges of caregiving, including the toll on his own health and the burnout that caregivers often experience. Yet, amidst the difficulty, he found meaning by staying present, bringing humor to dark moments, and cherishing precious time with loved ones. The experience has forever changed Chris—today, he proudly claims his identity as “Dad,” guided by his father’s legacy of love and laughter, and is committed to using his voice to support and advocate for other caregivers navigating similar journeys.

About Chris:

Chris is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with biotech’s and patient advocacy organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He spent eighteen years as a successful philanthropic facilitator, having raised millions for a variety of causes. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. Chris continues as his Dad's caregiver — caregiver to his life, legacy and memory.    

Thank you to sponsor: CareScout

Transcript

Natalie: 0:03

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. Lead with helpful tips and resources, and, of course, laugh. Now let's get to today's confession. Look, Jay, we came right in mouth stretching.

JJ: 0:30

I wonder, I wonder if, if that like you burn calories when you do that. I don't

Natalie: 0:38

know, it's almost like but, you know, musicians sing before they start like Mommy, mommy, mom. That's my way of singing this morning and then. But you know, do other podcasters open their mouth closed like to get their jaws ready for some chat? Yeah, I know right. How many people, how many podcasters out there just doing I

Unknown: 1:02

really should watch the video. Natalie and I do a Malva.

Natalie: 1:06

Yeah, we look actually, I feel like we look like a T Rex.

Unknown: 1:11

Hey, guess what? Natalie, hey, we have a guest.

Natalie: 1:16

We should do a caregiving podcast. What a novel idea.

JJ: 1:18

Go ahead. Tell us just something special about this guest. You want me to do my voice?

Natalie: 1:23

Yes, you can. Boy, it's always like we've had a bunch of guys on in the last recording. I love

JJ: 1:29

that I do too, because I feel like they're so, you know, there's they're so underrepresented, and I think it's so rare, that they will raise their hand and say, Hey, I'm a caregiver too. And it's, it's fantastic that we're getting so many to come out and speak, because once one does, their voice is just so pervasive in the caregiving crowd. So thank you, Kristen. That was his breaking out like it's a Chris. Well, let me tell you a little bit about Chris Schuler. That's who we have with us today. So Kristen Schuler is the primary caregiver to his late dad, who was diagnosed with glioblastoma in July 2021 now I say is because today, Kristen says his caregiving continues for his father's legacy and his memory. You'll learn Kristen is a fierce advocate driven by his father's laughter and love and a diagnosis that made their entire world stop spinning. And when he said that, Ned, I really felt like that was so much like mom's diagnosis. I never really thought about it like that, but your world stops. What Kristen learned during their previous time together. He's here to share with us today, and there's a lot he learned. So Chris, I'm so excited to have you here with us today.

Unknown: 2:44

Thank you so much. JJ, Thanks, Natalie, that introduction almost brought me to tears. So let's we're all starting on a good note here. Well, I'll get the Kleenex out

Natalie: 2:54

exactly, exactly, well. And you know, I think it's so important you have such a unique story. But that's the beauty of caregiving is that every story is a little bit different, and there's differences for the reason who the person you're caring for, what the illness is, or what the reason for caregiving is, but it's all about what really connects us as caregivers is that shared experience of care, and how do We take the lessons learned in each of our individual journeys, and then, like, put them together to have this amazing resource to say, this is what I did. And so, you know, people will try it and say that worked for me. Oh my gosh, thank you. That was the that idea I was looking for. And so that's why I love this. And I love Kristen that you're coming on to represent the male population of caregivers, because 40% that's what they've got on the statistics right now. And we know there's a bunch more. We know there's a bunch more. So Kristen, we always start off like, I say, I say this every time we start from the beginning, you were born, but kind of, give us your background, give us the kind of set the stage, and we'll work our way up to care, but don't go too fast. Give us a good story,

Unknown: 4:06

sure, sure. No. Thank you so much. And you'll hear my dog either barking or jingling here in the background. But, and you know the stats, I did not know that 40% of caregivers are men, and I'm surprised. I'm almost surprised in a way, to hear that, yeah. And so my story began, you know, we all think we're special, we're unique, and I guess we can make the arguments that we are. And my beginning started in South America. I am originally adopted from Colombia, and so my last name doesn't usually match what people might think I look like, which is a fascinating discussion and exercise and identity. Who are we really right? Am I? Chris Schuler from there, who tans really well in the summer, and we'll never break five, four or am I? Or am I? Chris. Schuler, with the German last name, who whose parents have ancestry in Ireland and Germany and England. And so I've always found identity be a fascinating part of my life, growing up and and some people will ask, well, when did you find out you were adopted? Well, I never really found out. I just knew it was. It was something I knew from from before I had memory. It was something that was just known and and so I counted myself almost as a as somebody in a little different but, but a very I had a special opportunity, and I knew that from childhood, I just knew that I was chosen like I was. I was picked to be my mom and dad's son, which is really a beautiful thing to grow up with. You know, as children, we absorb so much, right? And so that was what I absorbed. That was the first thing I absorbed as a child, was love and I was, I was their pick, which was a great way

Natalie: 6:04

we all love to be chosen that is such. You know, working in the foster care system, there's so many children who feel that they're unwanted because, for whatever reason, their parents aren't able to care for them. But to kind of shift it to I got picked, and I was so loved and wanted that I was I was I was it was it is a privilege. It is a privilege to get to work with children. Always say that to my fellow colleagues, and you know, I think it is a privilege, and it's a different set of circumstances. But I love that. I love that angle, because I think it, I think it's very true. I think it's true, and I think it's healthy, because we, all, every one of us in our basic elements, want to be attached to someone. We want to feel connected. We want to feel like we belong. And I sounds like that, that belonging, that sense of belonging, really endeared you to your parents even more like, you know. Think about it in the future. How did this impact this culture and this multiculture? You've got multiple backgrounds, honored that recognized and honored that, you know, hey, this is what we believe and and this is who my identity is. I'm really glad, I'm glad we went there first, because that's that's interesting. Now everybody's gonna be like, I want to

Unknown: 7:30

see YouTube. Yeah, yeah. Well, yeah, yeah. That's my that's my foundation. In fact, there's, there's a frame I have on my shelf here in my office, and it has been in my room since I was born, and I've carried it with me everywhere. And it starts left a poem. It's about our adopted child, but it begins saying, We you are the child. You are not the child of our bodies. You are the child of our hearts. And those words have always been inscribed over my head for a lifetime. And when I became a dad, fast forwarding way far into this story. But when I became a dad, it was a surreal experience, because I hadn't thought I have I hadn't thought much about being adopted, because that that really doesn't define me. And but when my kids were born, and I looked my son in the eyes and and he was the first human that I have known in my life, that is a part of my body. He's my we have the same blood that was so surreal and a really overwhelming. It was an emotionally overwhelming feeling that I didn't expect to happen moments after he was born.

Natalie: 8:38

I love that. I love that. Yeah, so you So you grew up, and you have great parents, and you're having because you're an only child. Too Correct.

Unknown: 8:46

I'm an only child because it was so dangerous to adopt a child from Columbia in the mid 80s that my parents, who were both blue collar New Yorkers, they had never left the country, and they got a phone call that said, your baby's ready, and they hopped a flight, went down there. They brought genes, they brought stereo equipment so that they could barter to get out of the country. They were prepared. The adoption agency actually explained to them that you will have to barter to get back out. And when they landed, their passports were confiscated, and they did, in fact, have to barter to leave the country. And so when they got back and later, years later, when I asked, Why don't I have a brother or sister, my mom would always laugh and say, we didn't know what the hell we were doing. As two idiots from New York with with high school graduate degrees, we had no clue what we were getting ourselves into. When we got out alive, we were like, well, let's, let's just stick here. We don't even want to leave our kid. We're good, we're good, we're good jeans, we're good jeans, man, let's not go back.

Natalie: 9:50

You know, I love that and so, so life then, you know, I'm assuming normal childhood growing up, went to went to school, graduated high school, went. On go to college. Keep going, keep walking.

Unknown: 10:03

Yeah, yeah. I mean, lucky to grow up with a with a wonderful family surrounded by love and laughter and and went to, you know, grew up on Long Island, New York, which is a which is a big part of my identity, and probably my accent and my attitude, most likely, and and so grew up there and had a great, great childhood. My and my parents, like I said, blue collar. My mom was a school secretary. My dad worked in a sewage treatment plant, a very dangerous line of work that I recognized early in life. And and I was lucky to have an opportunity to go to college, and, and they had not been to college, so that was a big deal. And I went to college in Rhode Island, where I met my future wife. Within minutes of moving in, I meet the girl in the dorm next to me, in the dorm room next to mine, and fast forward, she becomes my wife. And so we make that's like she's the one

Natalie: 10:58

you love, that I love. How fate just kind of our I say, God, God puts you right next to where you need to be. And so I love that. And so, so going through school, found the love of your life. You get married, and kids come next, I'm assuming, yeah, you

Unknown: 11:14

know, I thought she would love to live in New York. I was dead wrong. She was a Rhode Islander at heart, and so she was never going to leave the state and and so we made our life here, and I got into the nonprofit sector in youth development, then just started working. You know, you My mom always told me, growing up, this is what you do in this order, right? You go to school, then then you get married. You do not, don't have kids before you get married. That was a bird.

Natalie: 11:38

That was That is our family as well. Sorry to anybody who went out of order. But, I mean, my mother always said a baby some wedding story comes before baby story on TLC, yes, there's a reason. Amen.

Unknown: 11:49

It add is absolutely true. And so I just, we just began our lives together, and my wife became a teacher and and we eventually found a house, we moved in. We life was just life was just moving along. We were doing the things that we were supposed to do right, the things I think that we're all meant to do. And I convinced my mom and dad to to move out of Long Island, New York and move north to Rhode Island. Nobody does that. By the way, no ask any New Yorker or any New Englander, they don't go north. They go south because South makes sense, South is cheaper.

Natalie: 12:24

South is warmer.

Unknown: 12:28

Is warm. It's beautiful. It's absolutely beautiful. So we buy this house in a nice little neighborhood here in Rhode Island, and my parents are looking at places in in Florida and South Carolina. They're talking about retirement, might they were lucky to have both been civil servants so they could retire at 55 and we're looking at houses. And my dad, he'd love to be on like the real realtor real estate websites, right? And so he finds this house about six houses down the street from mine, and it's beat up. It is old. It's been abandoned for five years, but it's on a lake. It's on a beautiful lake. Now we couldn't afford house on the water, so we're not on the lake. But he saw this thing, and he they made a visit up here, and that was it. It was meant to be. So they retired here, six hours up

Natalie: 13:16

north, with more snow,

Unknown: 13:18

more snow cold. And he hated the cold.

JJ: 13:22

So I do have a question. So you know, in your bio, you wrote, I was surrounded by love and laughter. My dad was my best friend. You wrote all this in your bio, and your parents are moving like, six houses down, and I lived really close to my parents for quite a while. It wasn't a bad experience. Actually, I always say when there was buy one, free at the store. I was the free. My mom was the buy one. It worked really well for me for so long, when they moved how? What was your first feeling about that? Was it like, holy crap, mom and dad are following me? Or was it pretty comforting to know, hey, we're gonna have this family where, yeah, we're gonna share dinner, where mom and dad are retiring. I think this is this is our life. It's going to be good. What was your first feeling with that?

Unknown: 14:04

Oh, I was thrilled. I was absolutely thrilled because I grew up in a house where my grandmother lived above us and in the same house, and my dad grew up around the corner from his cousins, six houses around the corner, and so family and closeness. Nobody can make the argument that my family is not close. We are incredibly not just our, our our small group of family, but our, our extended family. We are all just very close. So when they made this move, it was, it was it was just wonderful. I was so happy. I

Natalie: 14:41

love that. It's a win for you, because, you know, and I hear you saying that what you've got is a multi generational household, and people who have grown up around family were the JJ and I are the only ones who moved away. And Audi was awful. We were terrible people. We were terrible people. What's wrong with you? Why don't. You like Tennessee, why don't you do this? And so, but all of our cousins, everybody, everybody lives within, I don't know, 1520, mile radius, and, and, and we grew up with our cousins, and I, I miss that for others, I miss that family connection, the extended family. And because a lot of people, I think there are people who worry about, when the matriarch or the patriarch of the family passes, that the children start to disconnect. And I can't imagine doing that, like for us, I'm like, we still, we're still gigging our cousins on Facebook. I mean, we're still tagging each other on Facebook, our cousins, like, Oh, hey, remember this photo? And so those are things that are really nice.

Unknown: 15:48

It depends, it also depends what kind of family you grew up with and the people in the relationships you have, right? Because, you know, we all know people who can't wait to get away. And rightfully so, right? So, in a way, we're we you, you Natalie and JJ, and we're very fortunate to have had that kind of a family where we actually want to be closer, we don't want to be a part, right?

Natalie: 16:12

Yeah, I couldn't agree with that more. I couldn't agree with that more because, yeah, we, I know people are probably listening to me and like, yeah, I didn't have that experience. And you know what? I'm sorry for that, but, you know, the thing is, is it's not but you can choose to make your experience moving forward. How do you and and this is a perfect example, because I'm a believer in this. Even though I live away from my family, four hours away from family, we have lots of people that we're connected with locally that, you know, so blood doesn't mean that's the only way to have relationship, and that's a perfect example. So this, I think, will segue into our next section, so we will be right back

Unknown: 16:52

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JJ: 17:27

Alright, everybody, we are back here with Kristen Schuler, the German last name, with the Colombian descent, which I know so with a great tan. So here's my question, you are raised in this family that's close in proximity and all of this, were you ever during this time? Did you see caregiving that you really didn't think about because of family relations? Were there? Was there taking care of one another? Did you see that with your elders? Or, you know, what did you see growing

Unknown: 18:01

up? The example my parents set for me is the example that I have lived by. And when I believe maybe I was about second or third grade, I got kicked out of my bedroom, and I had to give it up to grandma, and not the not the grandmother who lived upstairs, another my other grandmother. So my grandmother had had some surgery done. It was having some health issues, and so I moved in to my parents room, and my grandmother moved into my room. And so that was at a very young age, and I remember it was a transition of, I was a little kid, and then I and when, when she moved out, and was, you know, got healthy again, and moved back to her home. I got my room back and we we restored it. That was probably my first introduction to the role of a caregiver and the role of a parent child relationship that that that's your job. That's what we do. We take care of our parents. And so she came in, moved in, moved out, Nana, who lived upstairs through at the same time when she got ill around 97 and she had cancer, she had esophageal cancer, she had stomach cancer, we were right there. And so my dad now and my mom would go upstairs and care for her, as would his siblings, who live very close by, and there was this introduced, this constant revolving door of people coming to care for her. And I remember sleeping upstairs with my dad. We slept on the living room floor a couple of times when Nana was having trouble breathing or coughing at night, and that's just what we did. It wasn't even a discussion. It was Dad was going upstairs sleep on the floor, and I tagged along. We had our sleeping bags, and I was nervous for her, but I was not nervous because I knew my dad was there and nothing can could throw him and he he would take care of everything.

Natalie: 19:59

This is mad. Feeling at its best. And what, what secure attachment actually feels like is even in times, and it in it and and it builds resilience, is our mental health conversation, because all this is, this is what relationships do. And it's not about things. It's really about time spent time with, time being present. And that's really, I think, what really helps us to grow internally and build our own resilience. You're going through everybody's living in Rhode Island. The New York family did not realize we'd be living in Rhode Island. We're like, well, the wife is wonderful. And so when does, when does care kind of come into play, because you, you've got your career going. You're doing great things. I mean, you've got a really successful career.

Unknown: 20:43

So caregiving started almost immediately when they moved here, because my mother was diagnosed a second time with breast cancer. She had had breast cancer when I was a child, and it was almost a quiet experience, because they did not want to scare me, and she went through only radiation at the time, and she became a survivor, right? And then when they moved here, it was very exciting. As I said, I was thrilled. It was a big deal. She during the move process. She's diagnosed a second time, which, which delayed the move slightly, and I remember going down to Long Island and taking her to the treatments that I could in between taking off of work, but Dad, really, he took care of her. I mean, he did everything for her. And that's when, all of a sudden, I saw caregiving through a different lens. I saw it as a child. I saw it as a teenager. Now I'm seeing it as a as a young man, not a dad yet, but a young man working in my first job, and so thankfully, she is now a two time breast cancer survivor, and they move here, and they buy a boat, and we don't have kids yet, but that we are spending all of our time with them. I'm an only child, and I'm lucky that I love my my parents, so we spent a lot of time, and we've got dinner there every Sunday, Saturday, Friday, whatever, any nights they say, Come over dinner. We're there my life, exactly, yeah. And so we now are experiencing this wonderful they're enjoying retirement, and we're just thrilled. And

JJ: 22:14

your parents were blessed. I want to jump in here. They were 55 I mean, they're I call that really young, but they're young and retire. So that is, I mean, that's they're still very, very active. And so they're

Unknown: 22:26

active, they're going up. They went on a couple of cruises with with friends, to Alaska, to Hawaii. They really were enjoying their time as retirees. And when my kids came along, my son was born in 2016 my daughter, in 2018 they took such an active role in raising my kids because my wife and I had to go back to work, and in fact, I'll also add when my son was born, and the prospect of me going back to work, or somebody where we had to do something with our kid after a few months, And I was, I was now a new dad, and the first thought I had was, there's no way in hell I'm leaving this kid. I will not even with my parents. I love them, but I want to be with my son, and so I actually took a year and a half away from my career just to be a stay at home dad. Wow, which was why I would never have thought I would do that in my life. But I was just so in love with this little baby boy that I'm like, I'm not going anywhere. I'm staying Oh, I love that. I

Natalie: 23:27

love that, because it's really what it is. And so life's moving along. And then what's the trigger that gets you into care?

Unknown: 23:36

Yeah, so in July of 21 my dad had, had been retired here, living on this pond, this lake, for nine years. My kids were three and five years old, and life was perfect. I guess you could call it picture perfect. We're not rich where you know, we deal with our fair share of challenges, but life was perfect because I had everybody I loved around me, and I was over at his house right after July 4 holiday, where we have a big party every year. And we noticed in July 4, he was a little quiet. A couple people came to the house and his dog was losing their mind barking, and he didn't get up from the couch to, like, quieter down or get he just kind of sat on the couch. It seemed weird to me, but looking back, it was, it was probably the first symptom that I saw a couple days after the fourth I was over there helping clean the yard. Had a big backpack blower on, and it's loud, and a new neighbor just moved in across the street. I turn off the blower. We walk across the street, my dad and I, and we're having a conversation, introducing ourselves, and my dad paused in his sentence, talking to this neighbor, and it was an awkward pause. It was just you know when you when you know someone, and you know their their tone and their cadence and their speech, when there's a pause like that for no apparent reason, it something was weird. And we said our goodbyes. I went home, and that night, I called him, Rob, sitting right at this desk, and I called him. On my cell, and I was like, Hey, you feeling okay? And he said, Yeah, I'm fine. I said, Okay. I hung up the phone. I called him two seconds later, I redialed, and I said, Yeah, I know you just said you're fine, but are you feeling okay, dad? And he paused for a moment. He said, I'm confused, and that's not him, that was not him, that was not normal. And that's when I knew something seriously wrong. And I hoped that that seriously wrong thing was something not serious. I hoped he was dehydrated. The man only drank coffee and, like, vodka. So it's like he never drank water. The man never drank water, yeah, just coffee. And I was like, I'll bring over Gatorade in the morning and we'll figure some electrolytes. Walk it off. Yeah, Mike, you gotta maybe this is the sign dad that you got us finally start drinking water and and it, it was much worse than that.

Natalie: 25:55

Yeah, so who initiated doctor's visit you or your dad? Me?

Unknown: 26:01

Immediately. I said, we need to see your primary care doctor. Let's just something's weird, you know? And we hoped, we googled everything, right? So we're hoping us probably his overactive thyroid, his sister had overactive thyroid, so, like, it's probably, it's probably something like that. So there's no urgency. We did not think there was urgency, yeah, well, Natalie and JJ in the time that we made the appointment, and the seven or eight days between getting to see his primary care doctor, he had difficulty forming words. He had difficulty finding the words he wanted to say. So now we're like, what? What the hell is this? Yeah, and I'd say dad, and he was very quiet. Mom thought he was, she was he was mad at her, by the way, when I sat down on the next day, when I said, we need to go see the doctor, I said, Mom, dad feels confused, and I want you to know that we you should know that something, something's off. He's not feeling good. And have you noticed anything? And she said, I just, I just thought he was pissed off at me. So you know, when you live together for 50, however many years, you get used to your spouse, right? But then you have tiffs. And she just thought he was in a bad mood for a couple days, which also would is not normal and wouldn't have been normal for my dad, because my dad, I in the 37 years I knew him. I never met the man. I never saw him in a bad mood. Never in a bad mood. He was never He was quiet but and calm. He's never in a bad mood. So in that time, I could ask him, Hey, Dad, where, where do you live? He's like, I live in Rhode Island. I'm like, but where did you grow up? And he could, he pause, and he couldn't get the words New York out. And as you know, and as your listeners now know we're all from New York. We're lifelong New Yorkers. He knows he's from New York, and I'd say, Dad, do you know you're from New York? And he'd say, Yeah, I mean, but you can't say it. And he'd look at me, and he kind of go, Huh, wow, something was wrong.

JJ: 27:57

Yeah, I want you to, because I want you to tell me about the diagnosis. I want you to tell me the day kind of about diagnosis and what they tell you the prognosis is for

Unknown: 28:10

him. Yeah, well, I'll start the day before prognosis, which is when we had the CT scan. We had gotten to see his primary care doctor. They thought maybe stroke. We could have been a lot of different things. He sends him for a CT scan. We come back home again. We're sitting in this office. He's sitting right here next to me, and I am filling out a form to have him go see a neurologist. And the doctor, primary care doctor, calls me on my cell, and he said, Hey, you don't need to see a neurologist. You need to see a neurosurgeon. We see something on this CAT scan, and it could be it looks like a mass of some kind, but the doctor, the primary Kristen, is very careful to say it could be a shadow, could be nothing, but we see something, and you really need to see a neurosurgeon and I, and immediately, now he's sitting right next to me and he's on speakerphone. My dad's right next to me. My dad was the very calm, gentle man and but he had anxiety. He'd get anxious about the most random thing. I mean, if he didn't know where a bathroom was, he was like, I don't know if I'm gonna, I don't want to go to that restaurant, and I'm like, but there's a restroom and it's got a single stall. If I tell him it had a single stall, he felt better. So he had funny little, you know, anxiety. Well, well, now we, you're, you were just told there's a mass potentially on your brain. And I look at him, and he looks at me, and he, he has no reaction to this whatsoever. And I'm like, Dad, I'm gonna, I'm gonna make a new I'm gonna make a different plan. We don't need to do this form, you know? I'm gonna do, I'm gonna bring you home, and I'm gonna make a call and get a gene into neurosurgeon. Okay, and he's like, because now we're maybe, like, 14 days out from the first symptom. Now he's not saying much at all. He's really having trouble finding words. And so, JJ, the next day I'm in to see a neurosurgeon, I got on the phone immediately, and I blew through any receptionist. I blew through everybody. And I'm like, I need to see a neurosurgeon today, and it was about three o'clock in the afternoon. They're like, we do not have anything today, but I can get you in tomorrow. And maybe that's because we live in a tiny state, but we got lucky and we got in the next day, and that's where his tail end of covid. We're all wearing masks in the office. I'm there with my mom my dad were surrounded by a lot of doctors and white coats, three doctors, the neurosurgeon, the radiation oncologist, and the and the somebody else was in the room, and they tell us, we believe what this is, is brain cancer. We believe this is brain cancer, glioma of some kind. It could be what they call glioblastoma. These words are hitting me, and I don't even know what the hell these words mean. I've never heard of a glioblastoma before. I've heard of brain cancer, and that was the worst possible thing this could be, of anything that this could have been. This is the this is potentially absolute worst, right? And, and, and, excuse me. And the doctor is apologizing. The radiation oncologist is actually, is actually saying, so I'm so sorry, in the in the discussion, and I am welling up with tears because I'm thinking, Why are you sorry? I thought you're because you're gonna fix him. We're gonna fix this. You're gonna fix this. He's not he's my dad. He's not going anywhere. Yeah, don't be sorry. And and so I was really confused and scared. I was afraid. I was really afraid that day was your dad's reaction, stone cold. It was as if you if it was, if you told him that the mail wasn't delivered. He was the tumor, and his brain was affecting his comprehension, so much so at this point that he he actually fell asleep in the office. He started to doze off during the discussion,

Natalie: 31:54

wow, and he's in it. And if he's 55 when he retired, he's been there about nine years, so he's not what 65 if that

Unknown: 32:01

he's 69 Yeah, cuz they retired, lived it before they moved up. They were still in New York for a couple years. But then, yeah, he so he's 69 years old. We had just celebrated his birthday on May 29 and he was fine on May 29 and on father's day in June, when we took the boat out to go fishing with my son, he was fine. He's he was fine. And I said, This can't be. He is a healthy guy. He's never had any problem in his life. He's never been unhealthy. This can't be

Natalie: 32:28

so when Wait, hold that thought, Jay, we have to take a break and we'll be right

Unknown: 32:32

back. Care forward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support, like transportation, home visits and more details online@careforward.io

JJ: 32:47

All right, everybody. We are here with Chris Schuler, and what he just said was, when he was standing there and the office, sitting there in the office, and they got the diagnosis, he had all these doctors saying they were sorry, and he didn't know why they were sorry. Why are you apologizing? You're here to fix my dad. My question, Kristen, for you is, when did it flip? When did you say, Okay, I have to be strong for my dad. Where did it? Did us? Did it? Did it flip for you? And then you say, did they give you a prognosis as far as a time at some point? And you say, I gotta, I gotta take advantage of this time

Unknown: 33:22

I walked out of the room, I asked the doctor to please come out in the room with out of the into the hallway with me to ask what this meant. I wanted to hear this unfiltered. And he said, It's not good. These are not good tumors. But if we can get your dad five to seven years, we will, we'll do everything we can. And I said, Okay, five to seven years is a different story, because the tone was scary in there. However, then we get in the car home, didn't speak much. Nobody said much, because my dad can't really say much, and my mom is, I think, heartbroken, trying to comprehend what they just explained to us. You know, because I hate these offices, I hate the way these this news is delivered. I had a nice conversation with a neurosurgeon recently about how we deliver this news and and he he couldn't, I mean, he's a smart guy, much more educated than I am, and after I explained the experience and what I went through, he said, I'd never thought about it this way that you're describing. It's just, it's just not it's cold, it's it's and there's no good room to hear that. By the way, there's nowhere in the world that's going to make this softer or better, but there's probably better resources and better tools to equip patients and caregivers as they're leaving the room, instead of saying, if you want to check out at the desk and schedule your next point. Would that be

Natalie: 34:43

great? Yeah, and don't preach your copay, in case you didn't do that. And

Unknown: 34:46

don't forget the copay. And and then you're dealing with a receptionist who's dealing with 10 other people. It's just a slop. It's sloppy. So on the way home, I'm thinking a lot. I'm thinking about the number one pervasive thought is, um, is my dad not being in my. Life, My dad dying, I never considered or thought about the mortality of my parents. Yeah, I don't know why. I just never thought about it. And to me, they were young, they were healthy, and maybe that's why, but, and despite my mom being a two time breast cancer survivor, she faced it, she fought it, we did well, and even mortality date wasn't wasn't involved with that, but I think his lack of speech, his sudden symptoms, were so unnerving and frightening, my brain went in a lot of different directions on that drive home, and after I dropped them off, I cried hysterically. I was absolutely I was I was so afraid. It's fear that I've never felt before.

Natalie: 35:44

I want to talk about, I want to get into care, because you get into care and you do a lot of care. Actually, we talked about that. And so at this point, I can tell you, my brain completely shifted into almost like developing a crisis plan. All right, so this is what we're going to do. I'm used to taking the lead. This is what we're and this is and we started doing this and this and this and this, and these are all the things, all the appointments that we have to go to, and that you've got children, you have your job. What are the thoughts going through about, how am I going to do this? Because you're the only child, and you're and you're super tight, and what's the thought process behind that? And what, how do you start preparing because you're you're now kind of almost and people talk about cancer being war, you're at war.

Unknown: 36:32

Yeah, after I finished crying, one of the first places I went was my church, and I dropped in a pew, and I just cried because I needed to cry somewhere else. I needed to get rid of and pray, and I asked God for a whole lot of things that he couldn't deliver. And I prayed and I cried, and I thought, well, what are we going to do? What? How am I going to do this? And and then giving the news to family members who had a million questions everybody. It was as if the spotlight was entirely on me. I knew what I wanted to do, and this was immediate. I knew that I would handle anything with doctors, anything with clinical trials, anything with research, off label drugs, nutrition, holistic medicine. I will do all of that. I will find it because I need to keep my dad alive. This is the most important job I now have. It's more important than anything else in my life, and I'm a dad, so I've got to I'm lucky to have a wonderful wife, and even she knew you need to do what you have to do. And I knew these were the things that I had to do, because there's nothing more important ever, that's ever this is the monumental moment in my life, and so that's what I had to do mentally, was to say I need to I need to be in full mode to keep you alive. I never looked at myself as like I need to figure out how to be a caregiver. I looked at myself like I need to keep you alive because I'm your son and you're my dad.

Natalie: 37:59

That's it. That's a very I don't know that we've ever had anyone say it so succinctly about this is what my immediate thoughts were and how I was going to attach it. And you're right. None of us ever think, well, gosh, now I'm a caregiver. This is going to suck, and we don't. It's really more of like, what are the things I need to do? Because you're my person, and I love you, and that's not the case for everybody. Let's just be really clear. I always qualify that with sometimes people care for people they don't like and so and that happens, and that doesn't diminish the effort that you put into place, but in this case, you're having to say to your wife, okay? And she says, keep going. I'll be here. I'm here to support you. So how does your life change?

Unknown: 38:44

Well, everything changed. I was lucky. I was really lucky, in a way, that it was the tail end of covid for for at least restrictions on in person gatherings, because I I was working remotely. And when I called my my boss, she she said, I mean, I think she just says, very simply, just do what you have to do. Don't worry about anything. Do what you have to do. So I was able to continue working and continue doing my job, and I was in a leadership role, and I had direct reports, but I was able, and I was able to trust them, because I hired the right people trust them to do a great job. Well, I had to do what I had to do. So I will be forever indebted to miss Kimberly dumpson, who was my who was the Vice President of Development at the time at the college I was working at. We forever indebted to her for allowing me the space to be the caregiver that I had to be.

Natalie: 39:36

And so you did more than just doctor's appointments, though, because your dad got to a point where he would only allow for certain tasks to be completed by you, and we talked about that, because this is some of the challenges for caregivers, when the person only wants one person, and that can be an opportunity for burnout and other feelings and things like that. Us talk about what that looked like for you.

Unknown: 40:02

Yeah, yeah. I mean, I went full on. I wanted I wanted my mom, who was also my dad's caregiver, who lives with my dad. I wanted her to meet his needs in only the only way a spouse could. I wanted her to love him. I wanted them to have the relationship they had. I did not want her to clean him up in the bathroom. I didn't want her and I and she could do those things, and she she probably did at times if I wasn't there, but I was there almost 24/7 I did. I wanted her to, I wanted to ease it. I wanted to ease this on her, because I Googled this disease, and I've realized this is bad news, and I don't think she ever Googled this. She had, she just, she just took it one day at a time, and I wanted to, I wanted to be the buffer, like I wanted everything to hit me. You've seen probably that that meme or that image online of it, it's a picture of, like a dad or a mom, and they're holding a shield and there's arrows coming at them, and their kid is underneath them. That's, that's the visual representation of what my role of a caregiver was. I was protecting him in any way that I could, and at this point now, he has almost lost the ability to speak. After biopsy, he couldn't really talk anymore. So So I now also have to interpret as his son and as his caregiver. How do I meet your needs, and you can't tell me? How? How do I know you're hungry? How do I know you have to go to the bathroom? How do I know you are cold or that you just went to the bathroom? How do I know what you want to eat? How do I know if you're in pain? How do I know if you're scared? I want to meet. I want I'm trying to meet. These are the things keeping me up at night. Is he afraid? How do I fix that tomorrow? How do I how do I make him feel unafraid? Because we're not keeping anything from him. He. We're telling him what's happening. Before he lost the ability to speak, he and it was hard to get this sentence out, but we talked to him about the the standard of care and brain cancer, which sucks, but we talked about what the standard of care was and and we'd be going through chemo and radiation and not and he said, will this help me get my words back? And that was one of the last sentences he ever spoke freely. And I, I said, yeah, I hope so. That's the goal. That's the plan. Can do everything we can, dad. And so there's so much, not only physical aspect of caregiving, but the mental aspect of caregiving was so heavy. And I, and you said burnout before, I did not look at myself. I did not think about myself at all in this during this time. And that is not good. And I'll say that, that if there's a caregiver listening, which I'm sure there is, it is not below you to accept help, and it is not below you or wrong to take time for yourself if you can, because I couldn't, so I didn't, but it, it's Oh, it's okay if you, if you have to, so that you can be the caregiver that you need to be and want to be.

Natalie: 43:08

You know, it's funny, because it sounds like you really didn't give yourself the space or permission to be able to take that time. I'd say respectfully, I think there probably was a person that might be able to help you with some of the tasks. I understand some of the things we're going sure and but I think for me, it was about control in a situation that I had no control over, so I would grasp on to anything I could control. And so I hear it feels a little bit like that. I relate to that feeling of I must do this. I'm the only person who can do this for Jason. I'm the only person who can talk to the insurance companies and crawl up their rear or the nurses or the whatever about what he needs. And I think that, you know, without having my sisters and some very close friends to talk through that and to be able to kind of release that pressure on myself to say I feel like I'm failing. I don't feel like I'm doing enough. I wish I could do something different and have a good snot fest every now and then. That's a lot to hold in. I mean, how you're sleeping? You're eating, like seeing the kid?

Unknown: 44:15

Yeah, I'm seeing my children. But no, I'm not really eating well. And my wife was my my rock, and at night, every night, at the end of the night, because I would be at my dad's house. I'd work from his house. I'd be at I'd get my kids. This was what my days look like. I get my kids up and ready and out the door, school, whatever, wherever they had to go. I go to my mom and dad's house immediately, and I would get him out of bed, cleaned up bathroom, whatever we needed to do. Then, you know, my mom would do, you know the let's make lunch or breakfast, coffee, whatever, and I'm in the house all day long, helping him when I can. I am there until dinner time. We get him set up for dinner. Then I run home, and I have dinner with my kids and my wife and my family, and then we get the kids to bed at eight o'clock, and at 830 I am back out the door over there, getting. Him up, ready to for bed and cared for. I lay next to him every night, and I rub his head until he falls asleep. And that is my routine, and it was important for me to do that and to be there. I would not have chosen any other way to show up for him, and I'm glad I took that time. Glad. I really, I'm really glad I took that time to do that with him and spend that time, because time is all we have, you know, and I hate to get emotional, but, but it's not money, it's not things, it is time with the people we love. And my knew that my time was ticking, and it was ticking fast with this disease. So so that was, that was your routine. So to come back to your point of burnout, I was not eating well. At one point we had a visiting nurse come to the house, taking his vitals, because we had visiting nurses, occupational therapy, physical therapy, speech therapy with everybody. And at one point, this nurse says to me, I'm taking your vitals next, sweetie. And I'm like, I'm fine. You don't need to take my vitals. And my heart is racing even saying this, because it brings me right back there, and she takes my vitals. And on the way, as I walk her out the door, she said, Honey, I'd like you to go to the nearest walk in or hospital your or call your doctor, because your blood pressure is almost at stroke level and not I'm an Eagle Scout, I but I did not remember my first day of merit badge of what a good blood pressure was and and she gave me the numbers. I don't remember what they were, but she said, You need to go to a doctor now. And I called my doctor, and I'm so fortunate to have a great doctor. I got I called his office, and they said, Come right in. And I drove right over there. I'm in the parking lot, and there was an ambulance there, somebody was being transported out, and all of a sudden, I am, I think I feel like I'm gonna die in the parking lot. I was sweating. My heart was racing. I have never had the kind of anxiety I'd ever had, like I did that parking lot. I thought I was, I thought I was gonna die. And then now my in my head, the thoughts are, wow, this is it. Who's gonna who's gonna take care of him now, who's gonna take care of my kids? I'm gonna die in this frickin parking lot right now. This is it. And I walk in and they can tell I'm a little shook up, and they connect me to some stuff in there, and they calm me down a little bit. And I could come and my doctors like, You, you, you have a lot going on. This is not easy. And I you need, we need, I can help you. We need to help you. And they put me on. I don't know what the pill was. Took a little blue pill. I forget what it was, but he's like, this should take the edge off while you continue caregiving. And I was like, Sure, give it to me, because I didn't care what it was. I didn't look at the label or the bottle. I'm just like, yeah, whatever's gonna help me help him. And that's what caregivers run into and and that's not good. But I'll also say I got, I had advice from a lot of people, and a lot of people would say, How are you doing? How are you Well, I talked to my one friend who was a Marine, and I've shared this often, and I said to him early on in my dad's illness, what was going on, and he gave me very different advice than anybody else has ever given me. And it may not be the best advice, but I will share it, because it was the advice that I needed at the time. He said, You need to be a rock right now for your family. You can cry later, but you need to take care of everything right now. You need to do it. You need to show up. You need to show up and put up with it. At first I was like, Fu, like, What are you saying to me? I was almost

Natalie: 48:26

like, total Marine, though that's a marine mindset, though that is a marine that is a marine mindset, like, put yourself aside and get to the mission, and whatever the end result is that you're trying to seek and you sacrifice no matter what. Get it,

Unknown: 48:40

and that's why they are incredible, and that's why we are we have the freedoms we have and the safety we have, because there are people that think like that. So after he said that, I started to think, you know, he's he's probably right. But he also said to me, and if you're going to pray to God, don't pray for what he can't give you. You pray for what he can give you. And that flipped my mindset of, I need to pray for strength. Then I need to be strong. If I ask him for anything, I'm not going to ask that he takes this disease away from my dad, which is really what I want. I want him to live and survive. But I I heard him loud and clear and and so that that advice also helped me. It really did. It helped me survive this, this entire six month ordeal. Wow.

Natalie: 49:24

So your dad lived for six months after his diagnosis.

Unknown: 49:29

Six months and six months goes by in the blink of an eye in our lives, doesn't it? Yeah, six months is nothing. It was the longest six months of my life, and it has become the six months that transformed me into who I am today. Because after that, you can't be you can't be who you were before, no, after an experience like that, and Kristen, you both know that

Natalie: 49:57

you're not the same.

JJ: 49:59

Go ahead, Jack. You. It so, yeah, so that's what I want to know, Kristen, because you, you wrote again, some beautiful things about that. Tell me who you are today. Tell us in our audience how it changed you and what you have become.

Unknown: 50:13

This morning, I was looking for a shirt to wear, and my daughter was getting ready for school, and I said, I'll be right there. I got to get up shirt, and I was grabbing a college shirt, and she she gave me a sweatshirt, and she's like, wear this. And it said, and it said, Dad. Now she sees this sweatshirt as it says, Dad, because I'm her dad. That's right, my wife gave me this sweatshirt Father's Day a couple of years ago, and when I saw it, and it was a Father's Day gift for me as a dad. When I saw this, I saw my dad, yeah, and so who I am today, I think, is who he would have wanted me to be, which is dad. I am dad, first and foremost and always. It's not my job. I could care less. It's not any of those things. It's it is the thing I take most seriously in my life, as being a father. That's who I am.

Natalie: 51:09

I love that. I love that. And it just comes back from the inner workings and the weaving of the love and support and that you had from childhood and that natural, like you were clearly meant to be exactly where you're at, and everything that's happened, no matter how hard it is, and the short time that you feel like you've been short changed. It's all these things because you've done so much after to advocate on behalf of others. And I think that's really where people have to decide, how are you going to take this experience and what are you going to do with it? And everybody does something a little different with it. I mean, we started a podcast like, like, we're like, we had never listened to a podcast, and so and we think, How can we tell other people they're not alone? And I think about the work that you're doing to advocate. And we've had other friends like Kristen introduced me to other folks like Shannon trap Hagan was on and Kelsey Yeager, who was on, if you haven't listened to their podcast, again, great people. And this is a community that is alarmingly small, if you think about it from the world standpoint, it's a small community, and we're all trying to use our shared or collective voices to be able to make effective change for others who don't know what's coming. Right? That's what I would say. And I think your your thoughts on time is the true thing that you don't like. This is the true commodity. Time is what you want, and you want to hold on to, and how do you use it? Well, I know we're at, we're well past our time. I've said this for everyone that we've done. I'm like, Oh, we're well past our time. We're fine. So, you know, I want to go into, I want to go into sister questions. So Jay JJ has always got her head down, jotting down some notes, because she's got very meaningful sister questions. So J Do you want to start with a sister

JJ: 53:05

question? Well, I'm so many like moments there. When you came on, I noticed your dad shirt. First of all, Kristen, it hit me, and I was like, and I always have my question, but I always have a comment as well. In the beginning, we talked about your adoption, and you said they chose you, but I guess my thought in the whole podcast is that they chose you, but you were chosen for them. Oh, I guess that's my that is my thought. My takeaway from it is that you were absolutely chosen for your family. Thank you. My thought, my happy, my funny thought is, there's so much love and laughter with your family, and I feel like that continues to carry tell me something that in your memories, that you will that brightens you, that makes you laugh about your dad.

Unknown: 53:51

Oh, my God, my father was the most kind, gentle man and funny. He was like the Chevy Chase of his family. He was hysterical. We talk about caregiving, and this is so messed up. This is I'm going to share the story because it's so messed up. But I think your listeners can can relate to this. My dad had this great story of he was in the shower with my mother, showering her when she was recovering from a surgery that she had had after a car accident, and she was so, like, the medicine made her so tired that she started fall asleep in the shower. She's standing up, and so he is like, I'm in the shower with your mother, and she starts to fall asleep, and I'm holding this wet fish who's falling out of my arms, and she's she's gonna hit her head, she's gonna hurt herself, and he's like, Yeah, I know you're sleeping. Stop sleeping, right? And it's hysterical and and to find humor in times like that. And I did the same thing with him. So I would change at night, I would change his clothes, and I mean, he's totally nude, and he didn't care, because I'm his son, and we're just whatever. So. Like, I've never shared this out loud, but when you're when you are sedentary, you get rashes, right? We know this. So he had rashes, you know, around his groin and and I would laugh with him, and I'm like, Dad, I'll do everything for you, but I'm not doing that. I'm calling mom in for that. Okay? So he would give me a little smirk. So mom would come in and she'd put the lotion on her hand and and start, well, every time she did it, I would put on some terrible song, okay? I would put on I'm too sexy for whatever. I would put on the most ridiculous song. And I would get up on the Ottoman at the end of his bed while she's putting the lotion on, and I would dance, and he would laugh. I mean, he would have that and he couldn't talk anymore, but he was hysterical. And my mom was like, pissed. She was like, You are the two dumbest idiots I've ever met. And this is how this went, every time it happened. And I'll tell you what it reminds it brought laughter into the worst possible situation we could find. But I'd be damned if I wasn't gonna do everything I could to remind him of who we are. We are alive, yeah, and, and we have to find, we have to find joy, and that's what we found. I mean, it's ridiculous.

Natalie: 56:22

No, I will tell you, I feel the same way, you know, and for us, it was bagels in New York, even though Jason had, I mean, the one thing he probably shouldn't have eaten was bagels, because Jason had burned up salivary glands. He had no saliva and so, but we're taking pictures with bagels, like we're we're clinking glasses of champagne. We're like, Oh, we're eating bagels in New York City. Look at us living our best lives. We just so happen to be having cancer treatments. And so it's it's finding, I think this comes back to and this is a story. It's not letting cancer take over our lives, and it just is a part of our lives, and it's not defining who we are. It is a piece of our story, and we can still find joy. We can still find it may be hard to find, but darn it, do keep looking, because there are those moments that are glimmers that will allow you to say, I can look back at pictures. I gotta love Facebook for the memories, and it comes back up and you're like, I knew what I was doing, but that was a funny moment. Like, those were moments that you could have, or moments that you're like, I was at peace in that moment, yeah, and I was able to achieve it for even a second. I think that's so important.

Unknown: 57:35

Well, we learned so much. We learned so much from these experiences and and sadly when we are diagnosed. And for cancer patients who are listening when you're diagnosed, it's this rude awakening of what matters in your life and and what a gift to me that the rude awakening for my father became this clear, that it offered clarity of what matters and that it's joy. It is joy and kindness and love. Those are the things that matter and and I could have lived the rest of my life never having learning that learn that lesson, and there are people who we know never learned that lesson. And so to come away from these difficult things, it's it's heavy, but it's also a reason why we can't let those things, those very difficult things, in our lives. We can't let those things be the the catalyst to finding joy. We have to find it ourselves. It's there, and we have to find

Natalie: 58:31

it. That's the money, friend. That's the money. People always wonder what the secret sauce is to life, and I think it tends to be when you have this, this critical event that you don't plan for. It's always something not planned for, and and if you don't take it and internalize it, you'll it's easy to slip back into old patterns. That's the one thing is it's easy to slip back into old patterns. So you have to fight to stay present, and fight to for what and to remember, and that's the painful part. If you really think about it, it's painful to remember about that time, but then it reminds you, what are my priorities? And work ain't number one, and I have to remember that. You know, Chris, thanks so much for being with us and we could. You're the honorary brother. You are the brother we always wanted. You have two new sisters, and even the baby would be your sister. She would love you. But FYI, six one, and so yeah, the baby, six one. I'm only 510 JJ is the short one. But you know, thank you so much for coming on and sharing just such words of wisdom and being so authentic and open about the good, the bad and the completely, you can't make this up, but dancing at the end of the bed to I'm too sexy is really going to make the rest of my day, the rest of my day, because you need to watch the YouTube video so you can see Chris, so you can visual. Lies. Kristen going, I am too sexy for ridiculous.

Unknown: 1:00:05

It's the ridiculous chaos of of the the craziness of what life is and what grief is and what love is. All these things are complicated, but in the end, they're

Natalie: 1:00:16

beautiful. Yeah, they are beautiful. They are truly are. Jay, will you take us out?

JJ: 1:00:22

I will, guys, thanks for listening, and until we confess again, we'll see you next time.

Natalie: 1:00:29

All right, bye, bye. Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday, when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any 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. The views and opinions stated in this podcast are solely those of the contributors, and not necessarily those of our distributors or hosting company. This podcast is copyrighted, and no part can be reproduced without the express written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.