Living a Double Life as a Caregiver

"I finally found my purpose." - Adrienne Marioles

🎙️ Confessions of a Reluctant Caregiver brings you another raw and relatable episode as hosts Natalie and JJ sit down with Adrienne Marioles, a millennial caregiver with a story that’s equal parts inspiring and real. Adrienne opens up about her leap from the hustle and bustle of New York City to the emotional rollercoaster of caring for her mom, who’s battling Parkinson’s disease.

Expect heartfelt confessions, a few laughs, and some seriously honest moments as Adrienne talks about the isolation, anxiety, and unexpected joys that come with caregiving. She gets real about how therapy and finding a supportive community helped her navigate the ups and downs of this journey.

Adrienne also shares her own experience of caregiving for her mom, touching on the emotional toll, anticipatory grief, and those tough decisions that no one prepares you for. Through it all, she shows how she turned her struggles into a mission to uplift and empower others in the caregiving world.

It’s a conversation full of warmth, wisdom, and a reminder that caregivers are never truly alone. 

Adrienne Glusman Marioles is the host of the Young Life Interrupted Podcast, the premier show dedicated to young caregivers. As a professional speaker and advocate for Millennial caregiving, Adrienne shares her personal journey as an only-child caregiver for her mother, Hetty, who lived with Multiple System Atrophy (MSA) before passing away in 2020.

Adrienne’s story has been highlighted in the Wall Street Journal's article "The Call to Care for Aging Parents Comes Sooner Now," and featured on podcasts like Next Question with Katie Couric. Her experiences have also been covered in Health magazine, the Toronto Sun, Vox.com, and more.

Connect with Adrienne on Instagram and Facebook @younglifeinterrupted to follow her journey and find support as a young caregiver.

Social Media: 

Instagram: https://www.instagram.com/younglifeinterruptedpodcast/

Facebook: https://www.facebook.com/younglifeinterrupted

Linked In: https://www.linkedin.com/in/adrienneglusman/ 

Podcast URL: 

• Apple Podcasts: https://podcasts.apple.com/us/podcast/young-life-interrupted-a-podcast-for-young-caregivers/id1578015965
• Spotify: https://podcasts.apple.com/us/podcast/young-life-interrupted-a-podcast-for-young-caregivers/id1578015965

Transcript

0:00

Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now, let's jump right in to today's guest confession. Hey J. We're like giggle boxes. This is so much fun. You know what? I think it's because we're together. I don't hear. gonna touch you. Don't touch me. Oh, come on. Okay, ow. I'm gonna have a bruise. Okay, so for people who... We're gonna have to say this for... For a couple weeks at least. Yeah, at least. We're recording in a studio. We're together. We're together. Is there a song that goes a long way? Better together. I can't, I don't know for that one. one's embarrassing. I'm gonna introduce the guest. Yeah, let's just get right into it. we're... can't see me loving nobody but you for all my life. That's what it was. That's what it was. Okay, sorry. And know, nobody ever hears you sing. I know. And you broke right into that. I did because I like that one. Okay, now, you're gonna have to be quiet. I have got to introduce this fantastic guest that we have. There's no talking allowed, So we actually do have a guest today. And she's a podcaster, so that's a lot of extra pressure. know. And here's what she's going to say. You're not supposed to do all the talking, ladies. It's my turn. Oh, that's true. You know, anyway. OK, get ready. We have with us today. I mean, we're amazingly excited because this is the second time we've gotten together. The first time we totally bombed it. We couldn't get hooked up on the computer. So today we've got with us Adrienne Marioles. That was fun to I like that. She is with us. She is the host of Get Ready For This, because I love it. Young Life Interrupted. That's our podcast. It is a show dedicated to young caregivers. And there's always a why, is what I say. In 2011, her life changed dramatically when her mother was diagnosed with Parkinson's disease. And that's a disease that's really close to our hearts. our hearts. At 29, she found herself thrust into the role of a millennial caregiver navigating a new world of uncertainty and a responsibility. There's a lot of responsibility. That is true. She says she was living a double life managing her mother's health care, finances and daily needs while trying to maintain some semblance of normalcy. I feel like that's every day of my life. Every day. It's a hot mess. Adrienne, let's talk about hot messes. are so glad to have you here. I'm so excited to be here. I'm such a fan and it's so awesome to see you in the same place together. We can touch each other. It's awesome. Thank you so much for having me and it's actually working this time. We're actually able to go through with it. a novel idea. I know. That feels so right. So we always start off this way, Adrienne. I always say we want to hear about your caregiving story, but we want to know about some background. So start from the beginning, which is you were born and then skip to some good parts. tell us your background. Tell us about your family, all that kind of jazz. I was born in Tampa, Florida. was actually, I was born during the Super Bowl. I'm a Capricorn. me too. my God. We're basically twins. Yes. I'm January the 11th. January the 11th. It's all making sense now. I know that's why we're besties already. Sorry, J. She's not your bestie. You're August. I was born, think like during the Super Bowl playoffs, because my dad would always joke that the doctors like never wanted to come in to check on my mom because they were too busy trying to watch the playoffs. Respect. yeah, I was born, I was an only child. It was just me, my mom and my dad for I would say the first 11 years. parents actually got divorced, which totally okay with. Don't need to go into the backstory. It's not that kind of a podcast. Yeah. But when I was in sixth grade, my parents got divorced and so I was living with my mom. And that's really how we developed this super close bond and became best friends. I danced my whole life. So I was really involved with dance after school. I was like your typical high achieving student. I called myself a nerd, but I was like a high achiever. student body president, you know, always going out after the next thing. She's just like me, actually. She's not. like she's more like me. She's just like me. You can't dance. Anyway, keep going. And graduated from high school. I went to the University of Florida. Go Gators for any Gators University of Florida alum or current University of Florida students who might be listening and did my four years there. I graduated with a degree in PR and communications. Then after that, I moved myself up to New York, New York City. wow. You're a city girl. Whoa. And your mom stayed in Tampa, or did you take her with you? My mom stayed in Tampa. I know, it was a hard decision to leave my mom because since I was an only child and we were so close, she was used to having me there every single day. But as a mother would do, she was like, all right, it's time to let her go. Maybe this is not necessarily what I want, but I can't be selfish and she's got to spread her wings. Yeah. And she's got to do it. But she did not let me move up to New York without having a job first. I wasn't like New York, hop into different couches of friends that I knew just scraping by on cans of tuna fish. Yeah. I had to get a job first and then I moved up there and that's kind of where everything began. Yeah. wow. Yeah. Okay. So because I'm a nerd and that's where we got Jason's treatment, we're just live in the city. I lived on the Upper East Side for, I live on 65th Street between 1st and 2nd Avenue. Okay, that's pretty awesome because we lived on East 54th. Okay. Sutton Place. too Sutton Place was my hood. so I lived near the... Sutton Place. Yeah, and so that was where we lived down there. So I'm like, I know exactly where you live because we go up there every six months for his follow-up treatments. And I'm like, my God. I know where you live. Yeah. Which is pretty awesome. could have been neighbors. We basically were, this is again, Cap, New York City, Sarah Jessica Parker. I mean, I feel like you're a Sarah Jessica Parker. That's all I can tell you. I mean, I was living out all of the sex in the city. Please let it be that kind of fun. Let's not say all of them. Let's not say all of them. But the high heels and the dresses and everything. not saying I was Samantha, but I could have been. Same here. You've got the job up there and you are living this life. This is the career that you have always wanted. Yeah. I I always wanted to live in New York City. was like, I'm breaking out of Florida. I want to do something different. something was so magical about New York and it called me and being a dancer, like I loved that I could just go to a Broadway show or a dance performance. Like everything was at my fingertips and just like the energy of that city. So I felt right at home when I got up there. I really, really did. So how long did you live in the city before you get, cause everybody gets the call. So how did the call and really it's almost like a call to care. You know what I mean? when, to kind of go into that, like you're living your best life, you know, us and Samantha. It's so vivid, just like I'm sure it is for everyone. Hence why you coined it the call. It's, it's, I don't remember a lot, let's be honest, but this pivotal, I call it my pivotal moment. It was like the pivotal point in my care journey. I, so I moved to the city when I was 24 years old out of college. And at this point I am 29 years old. And at the time I moved out of the Upper East Side, was living in Brooklyn at a little studio apartment in Brooklyn. And it was just like any day I would call my mom on my walk to work and I didn't get her on the phone, which happened before, you know, maybe she left the phone in the other room or she was busy at the time and got into work, got busy with my day. And then five o'clock rolls around and I look at my phone and I'm thinking, that's weird. I don't even have a call back from her. So I try calling her again. She doesn't answer. I'm like, okay, I start getting like a little bit panicky, but trying to stay optimistic. So when I spoke to my mom the night before, she had told me that she was going to be going to dinner with a friend of hers. And I didn't have the friend's number, but I had the friend on Facebook. So I sent her friend a Facebook message like, I don't know what's going on, but I cannot get in touch with mom. I have a really bad feeling about this. she's like, I'm on my way there now, because she was going to pick her up and take her to dinner. She said, I'm on my way there now. Just like, try to stay calm. I'll let you know what happens. And I gave her my phone number so she could just pick up the phone and call. So she gets to my mom. She's like, car's here. My mom was living in a condo. So she's like, the car's in front of the condo. But she's like, I'm knocking on the door. Nobody's answering. So push came to shove, like she ended up calling the police who called the fire department who basically had to break into her condo. And my mom was just laying on her bedroom floor, completely unconscious. Wow. Completely unconscious. they had the, they called the EMTs. So the EMTs were there. Thank God she came too. We don't even know what happened if she tripped. and fell a lot, she was having these drops in blood pressure. So she was having these little bouts where she was fainting. Yeah. Wow. Nobody knows because my mom couldn't remember. And obviously, like the whole time I'm waiting for this call, I'm literally I remember going in a corner of my studio apartment. I'm on hands and knees like it makes me want to cry just thinking about it. And I'm like praying like, God, please, please, like, let her be alive. You know? And God answered my prayer and he answered my prayer with my mom many times, many, many scary times along the journey. And that is what I now call the moment that my life changed forever. My life and my mom's life changed forever. You said that she had fainted. Were there spells like that before that maybe, or was she feeling bad before and she hadn't told you about it? You know, I think looking back now, I have a feeling there was just a lot going on with my mom. because I was living long distance, I wasn't there to see it. And I know that my mom knew that I had my own life going on in New York and she didn't want to worry me. You know, as a parent, it's like your child's off, they're living their best life. Why am I going to burden them? Why am I going to worry them with what's going on with me? It wasn't until I would come home for visits. then I started to kind of notice little things here and there that I thought were kind of peculiar and odd. But she was having these, she had orthostatic hypotension, which is basically when your blood pressure drops dramatically. So if she stands up, that pressure drops so low that she would have these little fainting spells. So that could have been it. She could have tripped because preliminarily she had that Parkinson's Parkinson's diagnosis. She was starting to do like the shuffling of the feet, not picking up her feet. So she could have very easily tripped and fell. We don't know. And she doesn't remember. And it's still a mystery to this day. Did she have the Parkinson's diagnosis before this episode? when was your mom diagnosed with Parkinson's? How old was she when this happened? But when was her diagnosis? What age? my goodness. So I want to say maybe like four years, three, four years before that. It's kind of hazy to me because I can't even pinpoint the day that my mom told me that she had Parkinson's because it wasn't like she was telling me that she had a terminal disease like cancer. Like the only thing I knew about Parkinson's, was like, okay, Michael J. Fox, but he seems to be able to manage it. He's thriving. What do I know? Parkinson's is not as common of a, and I hate to say a household name. as you hear that someone's been given a cancer diagnosis. So even when she told me she was diagnosed with Parkinson's, I wasn't worried because preliminarily there was nothing that seemed off about her. There was nothing that was changing that I felt like I needed to worry about until the moment that changed my life forever. That's when I was like, okay. What did you do? Well, I booked a one-way ticket home to Florida after that happened because I was like, all right, this just goes to show something's got to change. I was noticing my mom's condo was a second floor condo. And I remember going home and I noticed like in the kitchen, there were all these bags of just tied up trash, just like lining the kitchen. And she said, I'm starting to get nervous to go down the stairs. you know, I was noticing that, you know, just little things just weren't getting done. So first and foremost, I got like a life alert system. I got her one of those life alerts so she could start wearing the necklace. That was step one. Step two, I enlisted a home health agency because the thing was is that we didn't have any family living in Tampa. So it's not even like I could call on my family to say, hey, guys, here we are. I'm a million miles away. I can start taking over responsibilities long distance. Like I started taking over her finances and other things I was able to manage from afar, but there was nobody I could say, all right, Mondays, Wednesdays and Fridays, it's going to be cut, you know, this cousin and Tuesdays, Thursdays, Saturday, it's going to be this person. didn't have that. So I looked into a home health agency and I started having like a home health aide come out. a couple times a week to be able to do my mom's laundry and take out the trash and just manage the household. And then I slowly started taking over her finances because I thought, I noticed like a couple bills slipped up when I went home once, there were all these unopened envelopes and unpaid bills. And I said, all right, I gotta get a grasp on what's the financial situation? What are all the bills? Like I need to start making myself educated about. Where is the money? Where is it going? She had a long term care insurance plan. I was like, I got to start getting educated, which was so crazy to me because this was all foreign. was like, long term care insurer. You're 29. You don't think about stuff like The only insurance I heard about is car insurance. So are you still, so you booked that one way ticket. You're working. So how does that conversation go? I'm kind of curious. Do you go and say, I need to go to Florida. Yeah. So fortunately, at the time I was working for a company that was super flexible. So I was able to work from, from my mom's. They were super supportive, which I know does not happen all the time. So that was really helpful. I kind of was between jobs. I get bored very easily. So I kind of was on this. We're stereotypical millennial, but it was also I was trying to figure out like, where is my place in the world? not to have been my ever. What is my purpose? You know, I started off in one field that I got my degree in. I was like, I'm not feeling this. And I was like, I want to help people. So I went and worked in nonprofit. I've worked in hospitality. So I've tried a lot of different things because I have a lot of different interests and fortunately, different whether it was a job or just kind of like a part-time consulting thing, it allowed me the flexibility because I had to book one-way tickets many times. And I didn't have a return flight because I just didn't know how long I was gonna need to be there to feel comfortable enough to leave her to go back to New York. So we're, man, this is so good. Take a break, take a break. But we gotta take a break. We'll be right back. We've got more coming. Okay, okay, okay, I'm ready. Okay everybody, we're back here with Adrienne Miroles. I love that. I love to say it. I love that. Feels very sexy. host of Young Life Interrupted. She's got her own podcast, so she's totally pretty know, she's actually brought in our podcast right now. But she's done it. mean, just give it to her. Let her have it. So I'm just, you, again, you're... Tell me about your life because I remember 29. Oh my gosh. you remember 29? I don't want to talk about again, I was Samantha. So I'm assuming you have like, you have friends. seem like a nice person. got friends, you got a life, you're going to shows. So tell me, what are you feeling? Because that's important. Your relationship with your mom is good. I hear that. But when are you feeling like, my gosh, how did I get, what am I gonna do? What does my life look like in the future? Am I gonna get married, have kids, do any of this, or am I gonna be a caregiver the rest of my And what the heck is home health? Yeah, what is home health? Gosh, it's so crazy how much I learned at such a young age. Yeah. It's, I feel like I was living this, like a double life. I think you mentioned that when you introduced me. It truly felt like a double life because... This is not something that I openly talked about with my friends. a big part of me didn't really understand what was happening. I've always knew that I was going to take care of my mom one day. I always thought that was going to come 20, 30 years down the road where I was, when I was more well-informed and established and, you know, had a partner and kind of went through all these life milestones. So I'm just kind of living my life in New York and I'm going out with my friends. and just having a great time. I'm 29 years old. Not a care in the world. I shouldn't have to focus on anyone but me. Like there's a period of time in your life where you get to be selfish. It's when you're two and then back in your 20s. Yeah. two and the whole world evolves around you. 30s. No, it's not even early 30s. It's in your 20s. It's when you're your best life. And like at some point when you hit 30 and you're like, well, I think I could probably play this a little bit, this card a little bit longer. Yeah. And so I didn't have to worry about anyone but me. I mean, I had to put food on the table for me. I had to support me. And now all of sudden, I was having to put the considerations of my mom into play. And it was just bizarre because, like I said, I didn't want to talk about it. I had an amazing group of friends that lived in New York City. But I didn't know how to tell them what was going on. And I didn't know how they would receive it because nobody going through something similar. So at the same time that I'm living my best life, I'm in New York, I'm trying to make the most of it, it's like in the back of my mind, I am constantly worrying about what is going on thousands of miles away in Tampa, Florida with my mom. And it's interesting because I didn't do therapy my entire care journey, but now I'm doing therapy like four years after my mom's been gone. It is what it is. I said to the therapist, said, I have never experienced this much anxiety in my whole life. I don't know why I'm an anxious person. I never used to be an anxious person. And she's like, Adrienne, connect the dots. What about when you were living in New York and your mom was in Florida and she wouldn't answer the phone? Hello? How you would feel until you could get her on the phone and know that she was okay. So it was a lot because I almost felt like I was living a lie and I was hiding this big part of myself. from friends, you I would date, that was a time, I was going on dates all the time. I would never bring up, yeah, and I, you know, I'm starting to do this thing for my mom and who knows where it's gonna go. I literally had no idea where it was going to lead me at that point, but it was a really crazy time. And then just trying to understand all the things and understand what is happening, why is this happening now? Why is this happening to me? It was just a very isolating time in my life. So how did you get any information about She's totally talking all the time. you catch because I had to jump in really fast. because I was going to ask a question. Go with your question. I to ask mine. So I want to know, like, you say to yourself, OK, well, home health care, when you figure out that's a word, and like, long term insurance. But what is the resource? Like, where do these ideas come from? Are you just on Google or where are you learning this stuff? Yeah, mean, so I guess my generation is pretty tech savvy. I Google, I always say, like, Google was my best friend. I could just Google the snot out of anything that I needed to figure out. Because there wasn't a welcome wagon. There was no welcome wagon. Like, welcome, Adrienne. Adrienne, here's your caregiving journey. Here's a 400 million page caregiver handbook. The yellow pages of It's like Beetlejuice with the recently deceased guidebook. Exactly. And they're all like, that's what we need for caregiving. I know. So you Googled it to death. I love it. That was just my curiosity that nobody rolled it out and said, hey, here you go. Well, I want to step back. I appreciate the fact that you said... I got therapy and even though it was after my mom died, but that doesn't matter. I mean, I'm a, I work in the mental health field and I'm going to say, you don't, you don't have to beat yourself up. And I'm not talking about that. I don't feel like you are, but I'm going to tell our listeners, get therapy when you're ready. Cause sometimes when you're in the middle of caregiving to add an hour to that your day and you feel like I can't give that. So you're gonna do it when it's the right time for you. And some people are gonna say, I need it right in the middle of it. If I don't have this me time to throw things against the wall and to almost sanity check myself versus after it's over, for me after it was over when we left New York City from Jason's treatment, I couldn't figure out what was wrong with me. And I actually said to friends of mine in the industry, I said, I think I need to talk to somebody. And then that made me feel uncomfortable a little bit because I mean, I'm in the mental health field and I'm like, I should know these things. So that's vulnerable right there. But the reality is, will they understand? Is finding the right clinician who understands that experience because if you've never been through caregiving, you don't understand that level of fresh health. And I don't mean that you don't love the person you're caring for. Cause some people don't like the person they're caring for. I don't hear you saying I didn't like my mom, but it ain't easy. Yeah. Even if you like the person, it can get hard. Mostly that. So like, so the part that was the most interesting that you, that you just said was when you said I dated, I had my friends, I didn't tell them. Yeah. Is was any of that around? Nobody was talking about it, but was it, do you think it was also avoided? Like I don't want to acknowledge this as part of what my life is. I want to have this life instead. And so I'm just going to like compartmentalize it so that I can sit over here. And it's almost like dissociating. I'm going to live over here in my little fake land. Because trust me, I walked around New York pretending I was Sarah Jessica Parker. And so I was like, look at me. I even took a picture with with the street sign with her and Matthew Broderick. They had no clue that I did a selfie with them. They were fake. Do you think it was part of a self-preservation? think there was a lot of things. think at the time I was kind of in denial about what was happening. I didn't, I had no idea the journey that was ahead of me. Like I thought that was hard. I had no idea how much harder it was going to get. And I believe a hundred percent avoidance, a hundred percent. I think the more I thought that I could, to your point, just compartmentalize, kind of put it over here, tuck it away. untuck it when I need to, get my stuff done, tuck it back and get back to my life. Because again, I'm like, this is my life. Why, like there should not be this thing interrupting me doing me, you know, and as much as I loved my mom, I was going to step up to the plate and do what I needed. But I was like, I'm gonna keep this thing over here. So I keep, keep living this big life over here. But I also think a huge part of it was that no one could relate. So it's almost like talking to a wall. And I didn't want to hear like, I'm so sorry that you're going to that. Let me know if you need help. trust me, I have the same, a lot of the same friends that I had in New York City going through my care journey. have some of those same best friends today. That's a whole nother conversation about friendships and caregiving, but I just, didn't want the pity. And at the end of the day, like, what were they really going to be able to give me? They weren't going to be able to give me validation. They weren't going to be able to give me answers when I had questions. So I didn't really understand the point. And now that I'm being very authentic and very transparent about what it was like going through that care journey, I was ashamed. I felt shame in all of this, which sounds so crazy to say that I felt shame. because it had nothing to do with me, but it was almost like I didn't want to be judged for having to go through this. And it sounds bizarre, but those were my feelings at the time. I appreciate that. Yeah. So you said, you said I had no idea what I was going to do though. So what you were going to go through. So let's talk about that because it gets harder. It's not just a... Well, there was that moment. Like you had to the decision to say it's time to leave the city. So let's talk about that. Yeah. Cool. Good call. Yeah, that was a tough one. So after my pivotal moment with the whole episode with my mom, I was making it a point to fly back and forth from Tampa to New York City more often. Like before, I would come home at Thanksgiving, maybe over the summer. But I was going back and forth a lot more often. And I was going on, I was traveling a lot. And I remember I came back from one big trip abroad. And this is like back in the day where it's like you could, unless you're on wifi, you couldn't get cell service. Like cell phones weren't as good when you were abroad. And I'll never forget, I was in JFK airport. My friend and I had just gone backpacking in South America for like a couple of weeks. And I turned my phone back on so I wouldn't get charged roaming in South America. And there was a voicemail that my mom was in the hospital. I literally stood in JFK airport. I was on my phone and I booked a one-way flight to Tampa and I was like, I can't do this anymore. It was so much the amount of anxiety, just the constant going back and forth. like, what kind of a life is this? And even more than myself, it was like, my mom was starting to get worse and I needed to step out of my selfishness and become a little bit more selfless. and recognize as much as I was not ready to leave the city, as much as I was not ready to leave this amazing set of friends. mean, that city made me the woman I am today. I am so proud to say I'm a former New Yorker. I was not ready, but I knew that my mom couldn't continue on by herself without someone close to her to support her. And I just couldn't put myself through this constant. worry and angst and it made me sick every single day. Not being able to sleep if I couldn't get her on the phone, not being able to concentrate, constant anxiety. Is she okay? Does she fall? Is her phone in the other room? You know, is she going to end up in the hospital? And then also flying back and forth because my mom had a stroke, had to fly home. My mom fell, had to fly home. It just wasn't sustainable anymore. And so I, I thought long and hard about it. And I said, I'm just going to have to give up this life. that I had created for the past 12 years. And I literally packed up three boxes, three big boxes, mostly just my clothes, and shipped them all to Florida, sold everything else, and shipped three boxes to Florida back to a state that I never in a million years, if you would have asked me, thought that I was ever going to be living in again, much less to be moving back to do what I was doing. Well, and I think about what Adrienne just said. She was living in a chronic state of anxiety and uncertainty. our bodies are going to say, you can't do that. We know that the impact of chronic anxiety and chronic unpredictability and that, you know, it will have an impact on your health. You said sleep, you said you were feeling anxious. And so your health is ultimately going to take a hit. Mental health, physical health. health in general, just all the people around you. Yeah, yeah, I agree with that. Yeah. So you moved back and you said, how old were you at this point? Because you had been in New York for many years at that point. So you moved back to Florida. Yeah. So now I was 34. You move back into the house that you grew up in or where are you? condo. The condo. No. So my mom had already Well, there was a whole piece I guess we missed in terms of what did I do when everything started happening with my mom. One piece that I left out is that ultimately the life alert and the home health aid weren't enough. So I had a conversation with my mom and I was like, it's time for that next level. And my mom actually moved into an independent living community in Tampa. Okay, so I'm gonna hold you on that for just one second because we're gonna take one more break. And then we're gonna come right back off of that. Awesome. All right, everybody, we are back here with Adrienne, the Young Life Interrupted. And we're talking about truly a young life interrupted. we backtracked a little bit and she is moving back. She actually is moving into the home that her mother has moved into to make life a little bit easier. And you are back in Florida where you never thought you would be. Yeah. So then what happened? In a million years. In a million years. So tell us about that. No, go ahead and tell us about Eliminarily, I stayed, so my mom was living in an amazing independent living community. That was kind of the first step into the senior care community. Because at that point, she was still able to do certain things by herself. She wasn't needing that extra higher level of care. But I moved back. I stayed there a couple of weeks. This might sound kind of selfish, but I had made the choice that I was going to move back. I was in Tampa, Florida, but I was like, I have friends down in Miami. There's more opportunity for me down in Miami. So I actually ended up preliminarily moving down to Miami. And every weekend I left on Friday. I came back Monday morning. I drove the four, the eight hour round trip drive from Miami to Tampa. to make sure that everything was good with my mom for the week because I made the choice like, okay, I wanna live in Miami, I wanna try something new. Like I'm that person that always, I wanna explore new cities and do new things. So I did that for a couple years going back and forth. And then in 2016, as my mom started getting progressively worse and I realized that Miami was a place that I wanted to stay and I knew I would be here long-term. actually... ended up moving my mom down to Miami from Tampa. And at that point, she was needing the next level of care. So I ended up finding an assisted living community, which is a whole nother conversation about how to navigate that on my We can relate. I'll say this. It wasn't, I'm going to tell you, you said, I was selfish. I don't look at it as selfish. actually look at it as you trying to hold on to some semblance of control and the life that you really want to have. And you said that you did that for years and it was your choice to go back and forth the eight hours each time around trip, whatever. And I don't think, you know, I don't want our folks who'd be like, well, yeah, I would have done that too. There's no shame in that. Like I know. You're not a failure because you didn't immediately move in with your mom and the other of her besties. Like you wanted to have your life and we're here to say you're allowed to do that and you found the middle ground that gave that it worked that both of you all had worked. It worked. You know, I read an article and we posted on it about when you move in with a parent. we posted on that and just kind of some interesting facts. But long run, it's about working with your parent because it's so hard to care for a parent, those reversing of roles. When your mom, when you guys said, okay, we need a higher level of care, but you said, I can't go to Tampa, but will you come here? I think this is the best choice. Was that something you guys said together or did you say you're coming to Miami? Tell me how that works. Benvenido on Miami. Yeah, exactly. So my mom, I'd love her. She was a very passive person. I'm like, am I your daughter? God love her. But at that point, I feel like my mom really trusted in the decisions that I was making for her. She didn't have ties to the community anymore. It's like friends that she once had, she just didn't have anymore because she would always get embarrassed to see them because with her disease and declining. so it's not like I was pulling her away from this life in this community that she was so vested in. And I said to her mom, ultimately, you don't have to leave. But at this point, it would be so much better for me to be a 20-minute drive from you versus a four-hour drive. I kind of step. mean, I hear so many stories that. It's very hard because maybe you're caring for a parent who's very like stubborn and no, this is what I want. I don't want to hear your opinion. And I have to say, I was very blessed in that way because my mom was just kind of like, whatever you think, okay, that's fine. Ultimately, my mom just wanted to be close to me. if moving down to Miami was going to allow her to see me more, that's all she wanted at the end of the day. Yeah. Wow. I love that. I do too. You know, it's funny, not funny. funny, interesting, not funny, ha ha, when you said your mom was embarrassed. Our mom is embarrassed to see people that she knows, people in our community. And we live in a small town. And so I've been there when we wanted to take mom out to have breakfast or have lunch or something. We go to Cracker Barrel. You can sponsor us. we'd go there, which is one of the only restaurants in our town. Mom would be like, I don't know if I feel up to it. And I'm like, what's going on? Is it the symptoms or is it you don't want people to see the side effects, which mom shakes real bad. And I'm like, we can either go have lunch together and not care what people think or we can sit here and look at the same four walls. And ultimately she'll be like, well, let's just go. Good. And she always ends up happy. She always ends up like glad for the time because... We don't focus on everyone around us, but embarrassment and shame. that is something that goes, especially with a chronic illness. it like, cause it's a progression. It's different from cancer when you were talking about, Hey, Parkinson's felt different than cancer because cancer feels like death. Parkinson's is a slow, cruel illness as well. It's just, it's cruel in a different way. It's not one's worse than the other. They're just differently cruel. So I know that your mom has passed, Adrienne, but I want you to just go into that a little bit with me because you're young and I know I felt very young. Our dad passed away when I was 38. And so there is still for me a very big sense of loss. I have feeling that there's, there's, did you have grief prior to your mom passing? Did you know that she was, ultimately you knew that she was going to pass, but tell me about a millennial, a millennial. and grieving and the loss of a parent. Yeah. So something that I learned after she passed, I actually did a whole podcast episode about it is this term called anticipatory grief. I had never heard of anticipatory grief before. And I can't even tell you where I came upon it. I don't know if I was listening to a podcast or I read something about anticipatory grief. And when I heard that term and I read about what anticipatory grief was, it was almost just like my jaw hit the ground. I said, for my entire decade-long care journey, I had been experiencing anticipatory grief. That's right. The ups and the downs and the grief I would experience at every progression of her disease. Yeah. So it was actually really interesting because I always pictured when my mom passed, it was going to be like the movies. You know, I'm on the floor sobbing and I'm inconsolable and nobody can get me out of bed and I can't eat. and I don't want to talk to anybody. That's how I thought I was going to be. And my mom took about seven days. She transitioned for about seven days. So it was like a seven day, almost like a waiting game where it was like the end is going to be any day now. But my mom was in, it's a whole story. was COVID. She was in hospice inpatient. So I wasn't able to be with her when she passed. But when I got that call, Actually, I woke up the next morning and my then boyfriend, said, can you just look at the phone? Every morning I was like, can you look at the phone? Can you look at the phone? Because I don't want to be the one that listens to the voicemail that she's passed. And I saw that there was a voicemail from the hospital. And I knew, but he listened to it. And I was upset. Of course, I cried. Of course, I was upset because now it was like, OK, she's really gone. But I was extremely surprised that I did not have this physical and emotional reaction to her passing that I thought that I would. And now learning about anticipatory grief, it just makes so much sense why. Because I have been for 10 years. Yeah, absolutely. Would you say, and it's a weird question, and if you say no, it's fine. Did you have a sense of relief in the sense of like you felt this weight come off of you? Because we had a guest talk about that with her mom who had cancer and it was just, she was like, she experienced exactly what you're talking about. That when she passed, it wasn't this full breakdown. Like everybody wants, they see on the movies. What was that? it like, it's almost like you're waiting to exhale. Yeah, I call it like you're letting the air out of a balloon. Yes. And I feel guilty. I think now that I'm four years out in my care journey, I used to feel guilty about saying this, but I know that I shouldn't feel guilty because it's how I feel. You know, there were many times when I was caring for my mom and I would never say this to anybody during my care journey. But now that I'm trying to be open and transparent so other people feel seen, heard and validated, you know, there were times when my mom was still alive that I would say, I want this to be over. And that sounds horrible to say that you want this to be over. Not only did I want it to be over for me, but I wanted it to be over for her. Yes. Because having to watch my mom, I mean, just it was talk about trauma, you know, having to watch a parent just completely transparent, a parent, anyone, a sibling, anyone completely transform in front of your eyes, especially the person who had raised you and made you the woman that you are. It's like those roles are reversed and now you're seeing this helpless person and this helpless human being, I knew she was suffering. And so there were many times that I wanted my journey to be over. And so it wasn't an immediate feeling. Obviously, like immediately once she passed away, it wasn't like I felt like, huh? But as the days went on and it finally hit me, like, wait a minute, I'm not going to mom's assisted living every day from like 3 p.m. to 10 p.m. I'm not. bathing her, not helping her eat dinner, I'm not putting her in bed, I'm not doing all these things. You know, it takes a while once they pass to actually believe that, you know, wait, I don't have to go anywhere. I don't have to be here. I don't have to do this. So once I started understanding like, wow, okay, this this chapter is really over. It was almost a sense of relief because I felt free. Yeah. for the first time in over a decade. I felt like I could finally reclaim my time, reclaim my life. And I was going through so many life transitions at the time, you know, from moving in with my boyfriend to just, you know, we started a boat business. There were just all these things happening. And I was just like, wow. But you know what I always say is that I believe that my mom chose to let go when she knew that the time was right. When she knew that I was going to be taken care of and she knew that she could leave me and know that I would not be alone in this journey. And I feel like she was like, okay, it's time for you to have your life back. It's time for you to take these next steps. And yeah, I felt free. I love that, like you're ready. You're ready. She let you go again. And she was ready. She let you go. She let you go again. Yeah. Oh, that's actually really, oh wow. I never thought of it like that. I like that. Oh man. I can't believe our time is already almost up. Oh my gosh. is so good. I'm like, and we're besties. This is so good. You know, and I'll tell you, this is time for our sister questions. Yeah. So let's do some sister questions because this feels really good. J, what do you got? I know. So. Much like us, your podcast name can be taken many ways. You know, we have reluctant in ours. Yeah, people are like, my God, you're terrible. You're a terrible child. I interrupted. I like that word, which sometimes people can take negatively. Yeah. So your life definitely was interrupted. was like, whoa, here's a pause. You need to stop. But it was interrupted. But I want to I want you to tell me about you. You press the play button again. good one. So it's kind of a pun, isn't it? You press the play button again. Tell me where you are today. good call. yeah. last month, and the last month was the four year anniversary of my mom's passing, which is so mind blowing. It's like, we all know that time is going quickly, but it just seems so surreal that she's been gone for four years now. in that four years, I have gotten married. I, you know, I now have a family. I'm a bonus mom. You know, my husband has a daughter, so I'm a stepmom. I feel like I finally found this purpose. You know, like I said, in New York City, I was constantly hopping from career to career to career. I'm like, what is my purpose? Like, what did God put me on this earth to do? How am I supposed to serve? And I feel like I finally found my purpose. And it sounds cliche, but it's to take my story and my journey and help other young caregivers who are going through this, who feel alone, who don't feel seen, who don't feel heard, who don't feel validated. who have probably never met someone their age that's going through the same journey. that was a huge motivation in starting the podcast because I was like, there are lots of podcasts out there about caregiving. And I think all caregivers, no matter how old you are, who you're caring for, we all have these common bonds that bring us all together. But I feel like younger caregivers go through this entirely different set of challenges as you're caregiving and also trying to work through these pivotal years of your life, going through these pivotal life milestones and still trying to figure out so much of who you are and what your life looks like at the same time. I think that's so true. You know, we did a special series on caregiving youth and these, youth that we had were, I think our youngest was 15, but we know that the youth that came on started caring at age five. And that's, I you think about where you at when you're a child and then adolescence, and then you hit your twenties and you hit your thirties. And we, you know, we, I was, I would, I would say I was a youth caregiver, but not like some of these kids were. And, but we didn't have caregiving until we were in our forties, which is super common. There's, there's sandwich gender and sandwich generation folks, but you're so right to say. I need, there's so many more young people, especially at your age. Like I was in my 20s when this started happening. And because people are choosing to have children later, and so their parents are older and they're younger. And we don't talk about it really well. I think what you're doing is so important. I definitely want make sure people know to listen in to Adrienne with Young Life Yeah, and we want to make sure we get the episode about anticipatory grief, which is a difficult. That's definitely a difficult word to say. That's hard to spell. Yeah, hard to spell. But we have, I have actually read a lot about that. You know, our moms had Parkinson's for 20 years, Adrienne. And it's, once you see that, once I read about what it was, I was like, my gosh. And sometimes I wonder, because I love my mom, but I wonder once I see her and I know the struggles that she has every day, there are those days when I think her life could be easier. And I will be grateful for those days. I love her and her good days, I'm so happy. I'm like, yes, it was a great day, but on those bad days. you know those, you know those bad days. Yeah, when they're bad, they're bad. So I'm gonna do our last question, which is always a fun one. Yes. Okay, it. Now that we know we're both Samantha. What is your favorite guilty pleasure? What is the one thing that you do just for yourself? I am a sucker for Lifetime movies and like Christmas time. Get me on that Hallmark Christmas movie. Yes! Yes! Hallmark Cruise, can we take the Hallmark Cruise together? Please. No, I'm not even kidding. Let's figure this out because I am obsessed. Like my husband makes so much fun of me. He's like, it's the same actors. It's the same storyline. We don't care. It's the Fall Festival. And Adrian. Right now, it's the fall festival and I'm and emotionally preparing for all of the return homes for Christmas and the unrealistic expectations of how do they make money and live in that house. You guys are twins now that she's the... Cap girl, cap girls. I'm gonna you right now, FII, the Hallmark cruise on NCL, it sold out. They did the first boat. It sold out twice. so I'm going to tell you, I was on the wait list, couldn't get on. It wasn't even like the Aqua. We're going on the Aqua for the self-care at Sea Cruise next year. It wasn't even the Aqua. It was, but I've, and I continue to follow the group. So we're going on our next Hallmark cruise and we're going together. Cause I don't want JJ to go. She's not even funny. I'm not making those cookies. I'm even in a sweater. I'm wearing a sweater right in July, man. Yeah. Wearing it. Adrienne, thank you so much. I am, I love to hear the stories, especially of those. that started younger. Because I know what my journey is, but to hear those different views, I think that's so important. Just like you said, the stories need to get out. We all have a caregiver journey. We all have that story. But especially during that time in your life, it's so important for others out there listening to know there are others like them. And they need to find their people because I feel like listening to someone that has that shared experience at those shared ages, that's what's most important. Those are the people that can hear. Representation matters, That's exactly representation. Adrienne, thank you for being with us. You're so welcome. Absolutely. And guys, until we confess again, we will 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. The views and opinions stated in this show 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.