
Confessions of a Reluctant Caregiver
The Confessions of a Reluctant Caregiver podcast offers a candid, unfiltered space to confess the good, the bad, and the ugly of being a caregiver through storytelling, guest interviews, and information sharing. JJ & Natalie are a dynamic duo of sisters supporting their mom living with Parkinson's and a husband who survived cancer. Along with their guests, they discuss their shared experiences in caregiving. Viewers and listeners alike will relate to our reluctance, be affirmed in their ability to be caregivers and gain the courage to confidently step out of the shadows to express their own needs. You are sure to laugh, cry, and everything in between but in the end, all will leave feeling better for the journey and part of the sisterhood of care. So grab your favorite guilty pleasure, and let's get to confessing!
Confessions of a Reluctant Caregiver
Not Stuck in the Yuck: Tricia’s Story of Family, Advocacy, and Strength
Tricia Fitzgerald brings a deeply personal and candid perspective to the experiences of long-term caregiving within a family affected by chronic illness. Drawing from over two decades of advocacy and professional work supporting children and families, Tricia’s story is rooted in her own journey—beginning with undiagnosed chronic illness symptoms as a child and culminating in the late discovery of Ankylosing Spondylitis and rheumatoid arthritis in adulthood. These diagnoses not only shaped her own life but also set the stage for her caregiving journey when several of her six children began exhibiting similar autoimmune conditions, adding layers of both challenge and resilience to her role as a mother and advocate.
Through her story, Tricia highlights the complexities of navigating the medical system, including the frequent dismissal of symptoms, gender disparities in medical treatment, and the persistent need to advocate fiercely for proper diagnoses and care. She candidly shares the toll caregiving takes on personal well-being, marriage, and professional life, while emphasizing how communication, mutual support, and humor—such as the family’s use of “mashed potatoes” or “mockingbird” as de-escalation cues—have fortified her marriage and family bonds. Tricia also reflects on the importance of self-care, finding joy in small moments, and encouraging her children to develop their own voices as advocates as they transition into adulthood.
Her journey is one of perseverance, love, and a relentless pursuit of both care and authenticity, making her story both inspiring and deeply relatable for caregivers everywhere.
About Tricia:
Tricia Fitzgerald, M.Ed., is a seasoned leader in social and family services with over 20 years of experience in education, advocacy, and program management. As the Program Director for Maryville Crisis Nursery, she oversees critical services for families in crisis. Her expertise is further honed by her role as Adjunct Faculty in the College of Education at DePaul University, where she has trained and supervised aspiring teachers since 2005.
Tricia is also the founder of Gentle Beginning, Inc., through which she provided childbirth education, doula services, and family advocacy for a decade. Her professional passion for supporting families is deeply personal; as a mother of six children, all with chronic health conditions, she brings unparalleled empathy and firsthand knowledge to her work. Tricia is a dedicated advocate, committed to ensuring every child and family has the resources and support they need to thrive.
Thank you to sponsor: CareScout
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
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. Hey Jay, good
JJ:morning. Natalie, how are you doing? If you're watching the YouTube video, you'll probably be able to see that I scratch my forehead twice. It looked
Natalie:like I am. I didn't know if you were going to mention that to everybody and all of our friends, because I was going to mention it, because I was worried that people would not, they we'd be talking about this forehead of yours and the assault that you did
JJ:on myself. It okay? It actually get the YouTube video. Hopefully they won't. They won't post these
Natalie:photos. Get closer to your camera so everybody can see it well? And it's,
JJ:you know, our guest said, it's not that bad. My hair is on the mic. It's not that bad. But I impelled myself. I impaled myself with my fingernail.
Natalie:This is what happens when you grow your nails out. You know, it's trying to be fancy, but it didn't work. So I'm going to trim them all, and I'm glad you part your hair that way, because away so that, that way it's fully visible. I'm done with, like, if you could just put an arrow in the video. It's like Beetlejuice with the arrows. I'm done with, okay, but we're not here to talk about your forehead, which is considerable, or the scratch that you did.
JJ:I'm gonna go be Tricia his best friend and ask her to be my sister, because I
Natalie:love you. She does. I want to tell you guys
JJ:about today's guest because she's pretty amazing. I just want to say that she could conceivably be my hero. And some of the things she says, They crack me up, because she uses words that I use, and she's just very truthful. So today we've got with us Tricia Fitzgerald. Get ready, guys. She's an educator and advocate and a community leader with more than 20 years of experience supporting children and families, but she spent a lifetime as well, those same years caring for her own family. So Tricia started her personal caregiving journey in 2003 when her first child was born, it took years of advocacy and persistence to get a diagnosis for that daughter. When her second daughter was born, Trisha added a caregiving journey in addition to traditional parenting for her, this daughter was diagnosed with an autoimmune inflammatory arthritis. Since that diagnosis in 2050
Natalie:going to tell everybody all that, hold on, three more of her children
JJ:receive that same diagnosis. So this what Trisha says, they tickle me. She says my caregiving journey is certainly overwhelming, disheartening and chaotic at times, and it certainly requires high levels of organization and tons of Spa here's my favorite. While we all experience some pretty awful days due to our conditions, I focus on modeling how it is okay to not be okay, but it's important to not get stuck in the yuckiness of forever. Yuckiness is one of my words, Trisha, and I am so happy to have you here with us today.
Unknown:I'm so happy to be here. You have no idea. I've been watching your podcast, and I absolutely love it. So thanks for having me.
Natalie:Oh, thank you. Thank you for being here. Well, you know, I try to get JJ not to tell all the details so that you actually have a story. Otherwise, it's like, well, that was fast for a second, and we're done.
JJ:There's a lot to this one. Get ready. Well, that's true,
Natalie:and JJ also didn't give the spoiler away, and because it actually didn't start with kids, and that's the part that's really interesting. And so I think that lived experience this is going to be such. This is a unique episode, because we talk about traditional parenting, versus what happens when you have children who have special needs. And special needs is the broadest of broad categories. And so if you really think about it, it doesn't mean they have intellectual disabilities or any one particular thing, because most people think special needs and they think disabilities. And so I think we this is what I love about the podcast, is just the diversity of people and their caregiving experiences. Because somebody is going to hear this story and they're going to be like, Oh, that's me. And so, so I will stop flapping and let Trisha. Let Trisha go ahead and start telling us her story. And so start from the beginning. You were born, and then, kind of like, you know, tell us about your
Unknown:background. I was born in the late 70s during attack. So I am from a suburb outside of Chicago, and I have an older brother and an older sister. Amazing parents, God rest their souls. And you know, I think, as you can probably understand, that was a time. Well, even now today, it's difficult to have a chronic illness and get that diagnosed, especially for children. So I don't have confirmation of this because I wasn't diagnosed. As a child, but I'm fairly certain that my journey with my chronic illness began when I was a child. So I began having symptoms when I was in the fourth grade, just a lot of tenderness and pain in my joints, in my hips and my knees and my ankles, you know, all of that. And I kept being told it was growing pains. I think that's the story of a lot of young people and adults who later get diagnosed, I had a lot of fatigue that beyond the you know, I went to soccer practice, and now I'm tired like fatigue. Fatigue like I always felt like I had that flu. So I'm not, I don't want to say I was blown off, but I definitely did not get listened to by medical professionals. Now my parents. I mean, of course, my mom was nurturing, and my dad was lovely, and, you know, they didn't understand what what I was going through. I don't think on a lot of levels, but they, it's not that they weren't listening. It's just, you know, it's the parameters of the medical system. Yeah. So it was not until my late 30s that I was diagnosed with Ankylosing Spondylitis that my children have. And actually, it turns out that my husband has a similar he has a genetic predisposition, predisposition to all of this, so he also brought that to the table. So again, I think I have a juvenile form. I'm not 100% sure, but now that I have multiple children with it, it's pretty obvious to me that that's what's going on, yeah, the combination of what I brought in and then my husband, but yeah, so as a young adult, so as a teenager, I was told I was just doing too much, you know, president of the club and playing soccer and all of that. Okay, so I tried to pare down a little bit, you know, as much as we can when we're, like, the three of us, I did a lot, yeah, and then get to college. Oh, you're just taking too many classes. You know, there was always a reason. Then I start having children. Oh, you're just a tired, busy new mom. So it was really, it was probably a journey a lot of people go through, right? Just feeling like you're saying all of the things you're advocating for yourself, but you're not necessarily being heard. But the good news is, I did get diagnosed. Finally, late 30s Ankylosing Spondylitis have now added a second diagnosis, which is juvenile. I'm sorry, not juvenile. That's wishful thinking. No. So now I also have rheumatoid arthritis added to the mix. So it's like, join the party. Why not? Like, here we go. Let's have another autoimmune
Natalie:What's one more? Yeah, what's one more? I've always been an
Unknown:overachiever. So here we go. Might as well get
JJ:Natalie and I are both going to say it wait till you hit menopause. It's going to take forever for them to diagnose that
Unknown:I'm pretty close diagnose that you're not
Natalie:telling you right now, this left shoulder is not the same. The sweats aren't here. This left shoulder, the joint pain for those ladies that are listening, it's real and it's not frozen shoulder. Cortisone shot won't fix estrogen anyway, sorry. We digress. Well, that is not this kind of podcast, but you're saying the
Unknown:thing, like we get told these, diagnoses. Oh, it's fibromyalgia, which is real, don't get me wrong, but it's like, dismissive diagnoses, right? Like it's frozen a shoulder, it's this, is that? So that was the start of my journey. So I was not a stranger to it once I started having children, that's for darn sure. Yeah, well,
Natalie:and if you really think about it, and this is, I think a lot of caregivers can relate to this, whether you're current or past or and this is a thing. Here's your tipsies. For those who are thinking about in the future, you're gonna have to do a lot of explaining and really pushing people to hear you, and then when something doesn't pass the sniff test, keep going. And I think you know what I hear you saying, and I'm not surprised that your PCP, and especially your pediatrician potentially missed it, because a lot of a lot of folks are general practitioners, and they are used to seeing the normal 8020 and you fell into the 20% you fell into the 20% and then your kids got to fall into the 100% because you're they probably asked for their money back from you. And you're like, really, come on, people. I mean, I asked, I mean, I do that with Jay all the time, but, um, so, so let me, let me back up first. So you had these illnesses, or you had these symptoms. Actually, it's the better words this. You had these. You've lived with symptoms, and you probably live with some level of pain and fatigue your entire life, but you move right along. You go to college. At what point do you meet your husband and and when the kids start coming along and all that good jazz?
Unknown:So finished college, was shortly out of college, trying to figure out what I wanted to be when I grew up. PS, still trying to figure that out. So everybody right? So we can relate, at least the most interesting people I know are still trying to figure it out, well into Yeah, later in life, but I met my husband. It's actually kind of a fun story. So I was in between jobs. I started out with a non profit. I liked it, but I also hated it. So I was like, okay, something has to change. So, and I'm really proud of my younger self by the way that I figured that out and I made that move, I have to keep remembering who that person was when I'm in the middle of something. But I'm like, why am I still doing this? So I leave this one job, and I'm like, am I going to go to grad school? What am I going to do? I knew I needed to pay rent and eat that that's what I did know, right? So I heard on the radio station that they were looking for extras like for filming in Chicago, and I thought, I'll try that out. Like, I don't want to be an actor, but I do want to eat. Okay, all right, like I said, So I became an extra and I met some people through that, and somehow got myself invited to a rap party. They're called, so it was like the end of a movie. It was a Steve Martin movie with who else was in it, Laura Dern. Was called Novocain, anyhow, so my best friend is going and I'm going. And I met her through the extra work, and I answered the door for the people picking us up. And that was my now husband, so he was standing there. But the best part of the story is one, I didn't want to go to this party. I felt, I thought I was the third wheel, and I was like, I don't want to go. But then I walk away from the door, I go up these winding stairs because she was house sitting this beautiful house. And I said they're here, and the guy driving is so cute, or actually, he wasn't driving. He was the passenger. But whatever I go the guy, the guy who just was at the door, is so cute. It echoes through the entire house. Oh, so I'm like, I can't go back down there. But I did. I went down there. We met, and the rest is history. So we've been together since 2000 and at the time, the reason why my husband was there, he did lighting and special effects on movies. So the reason I bring that up is he's now a police sergeant, so
Natalie:he did a little, I mean, that naturally fit right into it. So he maybe he's on the first 48 maybe he's on all of our crime shows, I mean Chicago. PD, I mean, we, we throw out all the names here, right? So he is a real police officer, for real deal.
Unknown:One, he's a creative so it's just really interesting that shift that he made, right? But it definitely helps him out on the streets, being a sergeant and being more of the creative mind. So yeah, so that's how we met. We've been together all that time and have six children together.
Natalie:So, oh, I love that. And I and, and you've got like, I love that. You're, I feel like you're all our Irish Catholic. Are you Irish Catholic? I feel everyone asked
Unknown:us that with all the kids, but that probably, but we lived in an Irish Catholic neighborhood for the very beginning of our Well, when we started having children, and it wasn't uncommon for someone to have six kids, definitely, but
Natalie:no, of course, her dad was the fire chief New York City, and there's six of them. They're all Irish, Catholic. I mean, just blonde, hot hair. I mean, honestly, that's always like Chicago Irish. I mean, it just naturally fits. Again, caregiving podcast, but we're getting there. People calm down well,
Unknown:and so, so I'm a teacher and he's a cop. Like, we couldn't be more cliche if we even tried.
Natalie:So I didn't notice that. I think that's pretty magic. And you got a ton of kids. I mean, basically, and I'm gonna tell you right now, we were talking to somebody else the other day, they only had five kids. I'm like, Dude, you needed one more for the sixth coming off the bench. You just needed one more for basketball. I mean, like you gotta have the six players. I mean, I'm just saying extra spend number six. So anyway, so you all are moving along, you are having and you get in and you get pregnant, and you have a baby, and so then what happens? Because care starts coming in pretty early after you have your first nugget.
Unknown:It does, you know, immediately I thought, what happens? I remember this distinct moment when the nurses all walked out, because, I mean, we could talk for hours, ladies, like the story of my first daughter's birth, like we barely got there in time, but my labor was like days long. So that was a whole thing. There was like nine nurses in the room. It was amazing and chaotic. It was basically a metaphor for our entire life and family life together. It was like, of course, that's how it went, um, but my husband and I look at each other and it's quiet for the first time in forever, and I said, What do we do now?
Natalie:I brought home a puppy
Unknown:like, like and like, we're in charge.
Natalie:What a responsibility. Apparently, that's what I hear. No So,
Unknown:so from the like, literally, the moment she was born, that we knew something was amiss, like she was amazing, but she was she rolled, let me put it this way, she rolled over on her first day of life, and no one ever believes me. I'm not kidding you. She was so hypertonic. She rolled over in her isolette. The doctors were like, Did that just happen? Yeah, so that that should have been everyone's first clue something was going on. So there was just a lot in with our first child that, again, was amazing, but we're red flags, and I so I have my master's in early childhood development. So it's that balance of, if you read too many books and you know too much, you can get in your own way. So I was trying not to be that mom, like, oh, every burp she does, is there a problem? But there was clearly something happening. And so it was a journey of going to our PCP saying, I know I'm hearing you say that she's just maybe a high. Your need be. But like, it just had to keep pushing and pushing and pushing. So it took us four and a half years to get a diagnosis for that one, and along the whole way, wondering if I was crazy, still wonder on a daily basis. Oh yeah, crazy.
Natalie:I mean, that's relatively speaking, but at the beginning because, but here's the funny thing though, is that if you think about mamas with who have their first children. I mean, because JJ turned out really great, and I think my mom was just tired after trying to deal with Jay, and then by the time we got to Emily, I mean, I'm glad she's alive and so, but you put so much focus in. And so I like the fact that you said, hey, look, my background is, is in childhood development and our child development. And so I'm looking at it and reading all the books and trying to be a great mom, and, and, and, and, and so it doesn't it makes sense that you'd be like, am I overthinking this? Right? And you must wonder, would have been the same? And the answer is probably yes, because you'd have been like, this is not the same as the first
Unknown:well, it was when, when my second came along. So that was, that was an interesting time. I was five months postpartum. I had just maybe started sleeping, found out I was pregnant with my second, and that was, that was a moment. I had a lot of moments. I was like, but was obviously so thankful, you know, when she came along, but she was a typically developing baby, whatever that means. But I thought she was broken. I, like, literally thought she was broken because she was sleeping and she was eating, she was doing all of the things that a baby should be doing, even more crazy. Because I'm like, why am I staring at her while she sleeps, like, making sure she's breathing? And I took her to the doctor, and I'm like, There's something wrong with her. She's broken. They're like, What do you mean? She's going right along with every I said, well, because this is my first and then this one, and that's when I think it really started to shine a light, like we got, we it still took until my daughter was four and a half, so it still took a little bit of time. But that's when, you know, you're not supposed to compare your kids. But when you have one who's typically developing, and you have one who has things going on, you know, it really, shone a light on there. And then my second daughter did not get that diagnosis until the juvenile arthritis, until she was in fourth grade, I believe. But we started to see things like with her motor development, all of that that led us down that path. But as a baby, it was just those, those differences, right? And so it really helped me go, you know what my instincts were, right with the first one?
Natalie:Listening to the mama instinct, listen, I'm gonna wait. I need to pause this. I need to pause this just for a second. Because I don't I'm not surprised. We're already time for our first break. More kids coming, people, we'll be right back.
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JJ:All right, everybody, we are back here with Trisha. Trisha Fitzgerald, we got two kids so far. That's what we're talking about. We're talking about kids with special diagnosis. So I'm going to back up here, not really back up, but I'm going to pause, and I'm going to talk about where your all's lives are. So you got two kids? Oh, good question. And yeah, so tell me where you are. First of all, is your husband? You know? Is he a police officer? Yeah, you're teaching, like, what are you guys doing? Because I know you're doing, like, advocacy. You're like, what is our diagnosis? How are you feeling because you've in life, gotten different diagnosis? How are y'all feeling? What are
Unknown:you doing? So I was a teacher when I had my first I was teaching in the Chicago Public Schools, and my husband was still doing the film and TV work. It just became almost like a full time job trying to figure out what was going on with my firstborn, and then finding out I was pregnant again, so I ended up coming out of the classroom. No longer was doing that, but still needed to well needed probably isn't the word. Wanted to do something outside of the home, but also be completely present. So I ended up starting my own business. I became a doula and a childbirth educator and an early childhood consultant. So I created a business, and I think that I supported close to 300 families in that journey, from the time I started it right after, I think I was pregnant with my third actually, all the way until, I think, right before I had my last child. Yeah, I don't know it's all fuzzy, but in that time I did that, and I also was working part time at night at the University where I had gone and got my masters. So I was teaching. I was teaching teachers how to teach, basically, is the easiest way to put it in, supervising student teachers. So that's where I was. My husband actually had just transitioned into becoming a police officer, so a. Lot of transition, and then we moved to a new house that was the Irish Catholic neighborhood I was talking about. So just a lot of exciting things happening, but, but a lot on top of it all. So now I have two girls, and then find out I'm pregnant with my well, actually, I ended up losing and having a miscarriage, which I come to find out, is part of my auto women, I'm at a much higher risk, but a lot of women have them, right? Like, I'm not dismissing it or minimizing, but like, it was just something that I was like, Okay, well, it was always a risk, right? So I had a loss, and then thankfully, got pregnant again and had my third daughter, so now we have three girls, and everything was
Natalie:awesome. We also believe three girls are awesome. Yeah,
Unknown:that's why, that's why I highlighted it. We had three girls. Things were great, but then it started to see more and more symptoms. You know, in the second born. Didn't see anything in the third born yet, but that's where we were. Yeah, it was exciting time. I was exhausted all the time, but it was exciting.
Natalie:I would say you were because you're dealing with your own chronic illness. You're dealing with a baby, the oldest, who's got has a diagnosis at this point, you've got the middle that's demonstrating, I'm assuming, what are the age differences between all the kids,
Unknown:15 months between the first two, and then she had 22 months between the second and third. And I had, like I said, that early loss in there, so I was basically pregnant the entire time. Like I had a short reprieve in there.
Natalie:You just keep having kids every, every two years or so. I like the stair step. We're all stair stepped, like we're all two years apart, right?
Unknown:Was like, what is that?
JJ:I said the OB GYN was like, hey, Trisha,
Natalie:keeping us in business and
Unknown:sending my kids to college, we were on a first name basis. People would look like, I had six heads. The nurses would be like, you called her that. Yeah, you know, we're besties.
Natalie:You know, here's my question. A lot of people would say, you've got kids that have these illnesses, right? These are chronic illnesses, and at some point, because you you ultimately, you and your husband have six children. The question is, is, at some point, do you all say, do should we not have kids? Should we, like, should we not have kids? Because we seem to keep having children that have these illnesses. I don't know the answer to that. That's why I'm asking, because I think right, a lot of people could ask that question. Oh, absolutely. So I don't
Unknown:know if it's thankfully or not. We didn't really find out that it was autoimmune, until my second one was in fourth grade, and we were just having baby after baby after baby. So by that point we, and I don't even know what year that was, I think we probably already had all six, or maybe five of six were out of the barn at that point, right? Exactly, and thanks. I feel like it's thankfully because if I'm being real, and I sure I can be here. I don't know that I would have kept having kids like they are my biggest joy. They're what I live for. I wouldn't change anything. But I don't know it might have made me pause. But at the same time, we have learned to live with what we have going on, and it's not, you know, we try to focus on the positive parts of it, so I don't know, but maybe not. Maybe I would have pumped the brakes a little bit. And, yeah,
Natalie:well, I mean, but if you think about it, you're going to have challenges all in your life anyway. And it's not this, it's going to be something else. And I just, I wonder about that. And we were talking a little bit beforehand. You know, your your kids is all girls, or did a did a boy make it into the pack, three
Unknown:and three, three girls, and then three boys, which is really neat, too. Yeah, it even gets wilder. My oldest and youngest share birthday. They're 11 years apart to the day, and then it gets even wilder. My two middles share a birthday
Natalie:as well. Oh, that's terribly convenient. I mean, we this is not that kind of podcast, but I'd love to chat further about that.
Unknown:None of it was planned, by the way. That's just how the cards fell. Yeah, I never win the lottery, though, if anyone's wondering, like, I'm not that lucky.
Natalie:So No, no, no, and they increase the lottery rates here in Virginia. Matt, I'm totally like, boycotting there. I'm like, I'm not paying that much, but I will say so. Let me ask you this, though. So you've got the kids are all really kind of stair stepped, if you think about it, you have kids at some point that are continuing to get some level they're all experiencing some level of symptom that's impacting them. And so you and your husband are setting back, and because you've got a lot going on, six kids is a lot anyway, period. I mean, three is a lot. And so you know, honestly, I'm sure after three, you're just like, What's one more? What's one more. And so, how is it? How is? How is? Because you've got the pressure of having six kids on your relationship, but then you also have the pressure of all the doctor's appointments, all the things that they have to do, and don't forget, the IEPs that might or 504, plans that need to be done. Because I don't know which one if you had either, just because they might need accommodations because of their illness. Says, and so what strain does that put on you and your husband and you personally?
Unknown:That's such an important question. Puts a lot of strain, a lot a lot of strain. I mean, it's already so exhausting just to be a parent, right? Yeah, finding time for yourself, finding time together, right? And navigating through I'm not going to call it a dark time, but it was a very trying time, you know, during the times that my children were small, and it was beyond the normal, right? Because how do you coordinate your schedules? You're trying to work full time. I'm trying to keep this business going and bring in some money and also feel fulfilled like things fall to the wayside, right? Spending time together alone. It was beyond, like, Oh, can we afford a babysitter? Like, we just physically couldn't do it for many years. Yeah, we just couldn't do anything beyond be in survival mode. So that was tricky, it really was. But it does get better. It does but, but it's an everyday it's an everyday journey, right? Like, it's everyday, taking a deep breath and going, okay, like, yes, chronic pain causes certain moods, not and it, you know, it turns out my husband also has symptoms so but being a man, and being in his field and all of these things, right, learning to stuff it down. So it's like navigating all of this together. But I feel like in a lot of ways, it made us stronger and brought us together. Like this sort of thing can either tear a family apart, or it can bring you together, and we chose to let it bring us together. But I'm not trying to paint a picture like it was fine and dandy and, you know, all just an easy cakewalk. It really was a lot of years there of you know, are we going to make it? Are we not? But he is my best friend. You know, I can't imagine going through this without him. So, yeah,
JJ:so no unicorns and rainbows there. So diagnosis wise, just out of curiosity, how did it come? So I know you said fourth grade was really kind of your second daughter. How? How did those come? The years? How did those progress?
Unknown:I was thinking about this last night. I don't really remember, like, you get this sort of this is why the human species still exists, right? Like, we forget. It's the same sort of thing when you go through this. So I don't remember exactly when it all unfolded, but it was like diagnosis after diagnosis. And I think I was told, Sydney, my daughter, who's 20, my second born, she crawled so the rest of the kids could walk and run. But the funny part about that, she never crawled. That's how we knew something was up with her. She scooted. But everything she was going through, and then coupling my my experiences growing up with hers, I started to be really good at seeing things with my kids. And so when my firstborn son, Mickey said, Oh, I'm feeling this and this, I'm like, let's go to the doctor. Like, you know, you just know right away. Or when my daughter Macy, who's now 18 and going off to college, same sort of thing. Like, it wasn't the exact same symptoms, but it was just enough that I was like, but then I also had to take a deep breath and go, not just because it's, you know, you have a hammer, not everything's a nail. So I had to, like, that's right, step back a little bit. So that's tricky, too, when you're dealing with the school system, because they're like, oh, here comes that mom. She thinks all over something.
JJ:Where do you feel like you got not to say better. But do you feel like the diagnosis is the doctors were willing to say, Yes, this is what it is earlier, like this lady is experienced, or you still were fighting for him.
Unknown:You know, there are so few rheumatologists for children in the United States. So while that's a terrible thing, it also means that they all talk to each other. So I feel like once we had the diagnosis, not for my first daughter, my second born, it was like the second one, once that one came into play, they were like, okay, she's she might be crazy, but not for this reason. So listen to this mom. And then I advocated as much as I could, and modeled advocating. And so then it was like my kids were taking over for them. For themselves. They were not going love they were not going to be dismissed. So good luck to any doctor who encounters them well.
Natalie:And all the husbands that are out there for them, I really appreciate that. And so I feel like girls are probably very strong willed and clearly going to be sisters of these sisters. And so because Mama's, Mama's an advocate. And, you know, I think that's the that's the part that, uh, is so inspiring for your kids, is to see my mom doesn't back down. My mom advocates on her behalf. And not only that, I feel empowered to do so and have my voice heard. And especially as females, who we know that it's very different for male symptoms versus female symptoms, and there's not as much research on the female side. Again, another podcast where we could, you know, have words about it, but we know that women's health is very different and and again, heart attack, stroke, different for men and women and so and so. Rather, was there. Differences. This is interesting, though, and I hadn't thought to go down this path. Is there differences in the diagnosis of the girls versus the boys? Absolutely.
Unknown:And we were just talking about this yesterday. So I'm moving my daughter into college and my 20 year olds with me. And somehow we got onto this topic. And it was funny, because in my memory, my 20 year old had MRIs done of her back and all of these things. She's like, Mom, no, I still, to this day, have not been able to get an MRI of my back. And I was like, Are you kidding? So here I am, like, literally, at a gas station, like truck stop, and I'm sitting outside the dump, you know, and I'm like, looking I said, Do I have permission to get into your My church? She said, Yeah, so I go in, and she's right. She has not had an MRI of her back. This young lady is 20, and has had a diagnosis since 1010, years, has never had one. And she goes, You know, I'm still so upset that. And so my firstborn son, Mickey, he got an MRI immediately. Like, immediately, the doctors ordered one, like, immediately, and she goes, You know, I'm really happy for him. She's like, I'm really happy for him, you know, it helped him get the diagnosis he needed. So, yes, my sons and you know, you could argue, Well, you had other kids already with the diagnosis, so they knew what path to go down. But no, like, totally different rheumatologists than the one they had, but still same hospital system right away, right away, had an MRI, and then my second son, out of the whole group that has it, same thing. So we have seen glaring differences. When you have an autoimmune they tend to start you on, like an anti inflammatory first, and then, if that doesn't work, it's like that step therapy, right, which I advocate against. I'm like, No, we know what this is like, Let's go for it. But the period of time they made my girls beyond that and suffering like truly suffering, versus my boys. Now, thankful that my boys got the treatment they needed quickly, but man, like it was
Natalie:so glaring. Yeah, that's okay. I'm gonna take the pause right here, and we're gonna pick right back up, and we'll be right back. But that's I had a feeling. You're gonna tell me that, so we'll be right back.
Unknown: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:All right, everybody. We are back here with Trisha Fitzgerald. So kids are 22 and 11. Is that our range right now?
Unknown:Yep, she's she'll be 20 they'll both be she'll be 22 in October, and he'll be 12 in October. So they're 11 years apart to the day.
Natalie:Yeah, yeah. I love that. Or so.
Unknown:Hold on. Can I math? He's 10, he'll be 11. I'm sorry. See when you have this many kids, I'm like, how you're good. And she'll be 22
JJ:I can go. So everybody can, you know, they can find their own food, they can forage. So we're good with that. You know, how's life now? Like, how has it transitioned? As everyone's gotten a little older, and some of them are out on their own,
Natalie:they are, everybody's out of diapers. I'm just excited for y'all, yeah,
Unknown:exactly, yeah, yes. So that's so much better. But you know, as any parent knows, it doesn't get necessarily easier, it just changes, right? Yeah, exactly. So my older girls, I think it's just awesome to watch them, like I said, getting their own voice, advocating for themselves, but then that's the tricky. You're going out on your own now. And am I supposed to be with a pediatric doctor? Do I need to switch to an adult doctor? So that's difficult when you have really formed that relationship, and so they're navigating that on their own with me, kind of there, you know, is back up. So how do you feel about that? Are you letting go or Absolutely? Yeah, I always wondered how I would feel. But out of the nest, it's tricky, right? Because, like, I can see sometimes that they're not necessarily, probably getting what I would think is the best care, but I do have to shut my mom, because it's, it's their journey, right, right? But, you know, especially with things like insurance and approvals, you know, all of that sort of thing like that, is tricky stuff. And so they do come to me still with all of that. But, you know, dropping my daughter at college, and, oh, she's two and a half hours from the nearest rheumatologist, and like, how she gonna navigate those appointments? And so that's a different kind of stress, right? It's that worry. But do you ever stop worrying about your kids whether they have a diagnosis or not? So yeah,
Natalie:we are always transparent. And so we met Trisha through CVS, who we work with, she's a specialty pharmacy user. So are we with our mom and so, you know, I'll say, and that's why I want to be transparent about it. But you had, and we watched your video where you really utilize Specialty Pharmacy and how they support you, and it really comes back down to you. You were managing 50 meds at one point, and that, to me was like, she is a total bad a like, she is like, nailing it. Holy smoke. Every caregiver is going to be like, how did you do it? Tricia, what's your secret? Trying to make sure that you're supporting and keeping everybody alive at the same time? I probably
Unknown:shouldn't say drink heavily, right? No, I'm kidding.
Natalie:You know your husband was
Unknown:ever no in all seriousness, so it was years of trying to figure out a system, years and years, okay? But really honestly, like you brought up CVS, their their phone calls. Well, can be annoying. Those really were helpful, right, especially if I already refilled it. I'm like, I already filled it, but thank goodness, because there have been text messages. I get, text alerts, phone calls in emails reminding me so that's been super helpful. I had, at one point, like a, you know, just an old school calendar that I was writing everything on, just reminders of who takes what when. And then, I think, having so many kids on meds, I learned that if we can try to streamline it, so if they're taking something every two weeks, try to get it where all the kids are taking it on the same day. Now I have teens and young adults now, so when they're all home for break and whatever like do they take it on the day they're supposed to, no, they have injections. Like, it's me going, Okay, it's on the calendar for Wednesday. It's now Thursday, and it's not Friday, you know. But trying to get them to take that over has been really, you know, it's, it's a journey of its own.
JJ:In the beginning, you know, I hear you say, okay, there was a calendar and we took it on the same day. Now it's kind of like off. So I'm thinking, you know, it's like, okay, it's a daylight it's kind of like me and my dog in the flea medicine. I'm like, Oh, look, it's a week. Like, it's okay. So in the beginning, I'm thinking, you were probably like, it has to be, you know, Thursday at 12 o'clock. Oh, so now, do you give yourself a little grace? Like, do you be like, you know, are you like, okay, you know, I did it, but the world is not ending. Like, how does your feeling? Are you lesser of a caregiver because you missed it? Or you're like, Dude, it's gonna be okay. Everybody's gonna live depends
Unknown:on how much sleep I got in my mood. No, but I got you, you know, yeah, I think of it as not that. It's not a life saving Med, because in so many ways, we got our lives back. I always tell people when I got on this one certain injection. Once I got my diagnosis, I felt like I had my life back. So in that sense, it is life saving, right? But I always just try to remember they're going to be okay if it's a day or two late. Now, these types of meds, now, I know there are some meds you have to take, like, very regimented thankfully. You know, we are blessed that that's not the case. So I've learned on my journey to give myself grace, teach the children to give themselves grace, but also be mindful you still need to take this med. This is, this is a non negotiable, and that's really tricky, because it's heartbreaking when your child first starts an injection and they're terrified, right? I guess this is the good side of having a lot of kids that have it, though, you know, having your teen daughter be the first one to give your son an injection. So he's going to trust her, weirdly, because they're, like, fighting like cats and dogs, she's going to trust her a little bit more, I think, because she's, you know, young and going through it. So I don't know it's, it's been quite the journey of, well, the biggest part for me is remembering. I also take meds. So as a caregiver, take care
Natalie:of yourself. Oh, I'm sorry, you have to take care of yourself.
Unknown:Sure, right? Seems so Elementary, but I just noticed this morning, I have one pill left of two of my meds. Like, how did that happen? Oh, no, so I make sure everyone else has their meds, as we do as caregivers, and sometimes I forget about myself, whether it's medication or just self care or what have you. So yeah, I have to remember that we all matter. We all need to be mindful of that.
JJ:Do you feel that as everybody, you're kind of leaving the nest? How is your marriage now? How is relationship going
Unknown:new face, obviously, with the empty nest, things hurting to happen, but I think that, you know, not that my husband ever didn't get it, but I was doing the caretaking, and he really that wasn't his primary role. And now I'm back working full time, you know, for almost 10 years now. And so he had no choice. He had no choice but to become a big part of it. So he really and I think that helped me tremendously. You know, seeing he was always invested, but it was in a different way. So that just kind of took us to a new phase where he's like, No, I got it, and he'll take them to the rheumatology appointments. We're still working on making sure he schedules the next appointment before he leaves the office, because that's part of what my system is too. Like I will I know myself. I am not going to remember. I gotta schedule it, get it on my calendar, you know. Then go to my chart, then put the include detail, like I have this whole thing. And I have to also remember he's his own person. He does it differently, you know. So it's that, that balance of that's a
Natalie:true caregiver right there. Because I remember when we went to do respite for Emily, who'd been caring for mom, she was given these, these very explicit details, and I stopped listening at turn right, because I was like, I should be fine. And like, I'm like, turn right at the cow. It's fine. We're from rural East Tennessee. It's funny, because I think that's as caregivers That's the hardest thing to give up, because number one, you're the caregiver, but you will always be primary role the mama bear, right? And the mama bear likes things done the certain way. And I remember when Emily had her children, she was very explicit with her husband about what he could and could not, and so I think that would be kind of hard. But what was the point where you did? You have to have a conversation and say, I need you to come in more. I need you to get closer into caring and helping me with this, as opposed to being a little bit more traditional male like the wife's got it. I mean, we just call it for what it is. Women are seen as the as the caregivers. We just call it for what it is.
Unknown:Yeah. I mean, it wasn't just one conversation, it was a lot of them. But being that he's not just a man, he's in such a male dominated, you know, like he's
Natalie:so he's manly man,
Unknown:yeah, exactly. And so he was never resistant to it. I just think he didn't know how, right? You just didn't know. And I can't fault someone for not having that skill set. You know, I had to get past my assumptions that he didn't want to like I was the best thing I ever learned. And I think it was a therapist who told me she said unspoken needs and wants are premeditated resentments. And I was like, whoa, whoa, whoa. And so I, you know, and I already communicate so much, like to the point my husband's probably like, if she's still talking, but I wasn't necessarily saying the things that I really needed to be saying, right? And so I had to learn like he's not a mind reader, you know. And then I had to express that down, like I'm not a mind reader, like I, I don't know how you're feeling in all of this. And so it's been years of us learning how to communicate in a really healthy way. And so we're not, you know, we're not 100% there yet, but that changed everything for me when I heard that.
Natalie:Well, you know, I'm not gonna lie to you, that is clearly going to be a clip, because that's good advice. That is really good sound advice. And sometimes, and you've mentioned going to a counselor, I mean, sometimes that's what you need, independent person to be able to hear what you're saying. Give a different perspective and say, Have you thought about it this way? And I can tell you how many times I've gotten frustrated with my husband, even now, you know, I don't want to be your mom. I don't want to tell you what to have to do and but I'm glad you mentioned that, because I guess if I don't tell him certain thing, then I end up having to get into this. And you get in, it's so circular. You get into these and it becomes un it's unnecessary, and I think so stop us. You know, for me, I would say to myself, stop assuming Jason knows everything that you want in your mind,
Unknown:right, right? Exactly like they may be your person, but they don't necessarily, you know, weirdly, they can't read your thoughts well. And I'm all over the place, right? I thought it was just part of the whole deal. But there's some days where I'm feeling this, and then there's other days, and I'm sure it's very confusing for him, because he's like, what? But as long as I'm communicating it, right, and I keep telling him that as well, um, but there's that piece of like, I think, and maybe it's sexist to say this, but men are not taught to be vulnerable. They're not taught that it's safe. So it's been a lot of those conversations, of it's okay to talk about your feelings, but then remembering maybe he doesn't have the words for the feelings. So Right? Like, I don't know, I just feel off, or I just feel whatever. So I mean, we just had this conversation right before I left with my daughter. Like I could see, you know, the body tension and the way he was holding his body. And I was like, Do you feel it? Do you see it? And he was like, I'm just cut, you know? And he got defensive at first. And then the thing, so my parents had this thing when they would start to get at each other, they would yell, mashed potatoes. That was the thing that stopped them, I know. So we it was hilarious. One of them would just go mashed potatoes. So the thing my husband and I do, and then they would both laugh, right? Like, how can you not someone's screaming mashed potatoes at you. So my husband and I, have you seen that meme where the guy goes, Oh, what is that? Is that a mockingbird? And then it goes to the cliff of the mockingbird, and the mockingbirds going, Oh, is it a mockingbird? Is it a mockingbird? It's so goofy, but anytime he's starting to get defensive, now he'll catch him and take a breath and go and then I just start cracking and I do it to myself as well. So I got him to kind of slow down, do the mockingbird, and then. Off, which sounds hilarious. And then he went, you know, I think I'm stressed about, I don't know. And I go, well, what could possibly be going on this week? Oh yeah, you're leaving with our daughter to take her to college. And then we have two of our boys away at camp this week for arthritis camp. So just kind of teaching each other, it's okay again, to not be okay and to pause to breathe, do your Mockingbird or mashed potatoes or whatever it is you do, you know, to bring levity to the situation and then talk about it. I mean, it's not perfect, like there's doors slammed and whatever, but once in a while. But this is kind of where we've evolved to which, when I think back to years, you know, 10 years ago, I never would have dreamed this is where we'd be. It's awesome. Yeah, those
JJ:are basic marriage skills, though, Trisha, you know? I mean, that's advice for anybody that's so fantastic to just say you have to deescalate it and go add mashed potatoes or Mockingbird. Those are just fantastic. You know,
Unknown:that's fantastic. Well, and we do the same thing with the kids when they're having a hard time, right? You got to bring levity, deescalate. Does it always work? No, but we try,
Natalie:yeah. But you know what? I will say this, if you really think about it, comes back to being a safe word and and really just saying, I'm I'm not okay, I'm upside down, or I don't want to, I need to pause. And a lot of people think that they're they, they can't walk away from a difficult conversation and come back to it. And so I think many caregivers, and I'm sure mom and Emily experienced this together, but this is any, this is any, whether it's parent child dynamic, rather, it's a caregiver dynamic with the person they're caring for, or just could be siblings, it's anybody. How do you start teaching healthy ways to have difficult conversations, and when the when you get to a point you need to step away and that you can come back so that you have can have finished the conversation? Because you really, the last thing you really want to have to do is have a relationship repair, because that means you let it go too far. But if you let it go too far, you need to repair the relationship, because otherwise it's inside of you like a cancer and it just eats at you absolutely and I think that's pretty big. You know, it's time. I can't believe this, because we are well over our time. I think it's time to ask our other sister some questions.
JJ:I know I have to, but the first little more in depth, but the second one is not okay. How does it make you feel as a mom to see the kids relationship together and how they help one another? How does it make
Unknown:you make me feel there's so many different feelings. One of them is okay. Let's start with the positive. I feel really proud of the of the journey that we've been on, my husband and me and my kids, those good days and those bad days, right? And working together. But then there's that Mama guilt too. Back to your first one of your first questions of or when you mentioned they might want their money back. You know, it's like, so it's awesome to see them helping each other and advocating and because they innately know, you know, they don't know exactly what someone's feeling, but they know what it's like to have a chronic illness and have a bad day. So that's awesome. It makes me feel so good. But then there are moments of that Mama guilt of like, oh, fuck that. They have to go through this, right? But that's where I am. I mean, I do my best to not internalize that and make that my own, because it's where we are, it's what we're it's what we're dealing with, right? It's the cards we were dealt. So, yeah, it's pretty awesome seeing them work together.
Natalie:Yeah, I like focusing on acknowledging the hard, but not focusing on the positive, because all it's done is built resilience. They're going to be pretty darn resilient kids,
Unknown:100% there are days, though, where I can see it on the face. They're like, but I don't want to have to be so resilient, right? And that's fair. That's fair, yeah. But yeah, you know, it's that serenity prayer. I always say we have to accept the things that we can't change and know the difference between the things we can and can't. And so it's really awesome to see them working together and supporting each other. And of course, there's like, the normal sibling things too, where I'm like, doesn't matter, what else does these kiddos have?
JJ:They're good. Now you're good. The one thing, here's my fast the one thing that, when you're, you know, we talk about the yuckiness, you got to get out of the yuckiness. What's your thing? What's your thing that you would say to somebody, well,
Unknown:so our thing is finding the glimmers, right? And finding those positive moments, even if the rest of the day was just, you know, so we try to do things together, you know, like it's something simple, like just cuddling on the couch, right? I love that my my 12, soon to be 13 year old, still cuddles. Actually, he just turned 12. Why am I trying to make him older? I don't or is he 13? Y'all, I don't know how old my kids are, but my son, who's going into eighth grade, I think he's 13. He just still crawls up into the bed and, like, wants to cuddle, he still wants to watch Netflix. So I'm holding on to those moments, right? So on those good days and bad days, but also music, live music is our thing. So. So like, we just went to see Melissa Etheridge and Indigo Girls just two nights ago together.
Natalie:Oh, my God. So we
Unknown:even take road trips, like we'll get in the car and we'll drive to another state to go to live music together, or just down the street to a place. To me, music is pain relief, like it really is. It's what keeps me going. And so I've kind of tried to pass that down to my kids. So yeah, that's what we do. We try to find those glimmers and not get stuck, like acknowledging we're having a bad day or a bad week or a month or whatever, but not get stuck in that.
Natalie:Yeah, I'm going to tell you, I absolutely love that. I know that you put down on self care, because we always ask our guests, you know, are there things that you recommend? And we always try to hit on these areas, because that's the thing. This is what we want to know. Like we all want to know the secret sauce, right? And if there was, and it's really not a secret, it's just saying it out loud, because I think we all know the things that help us. And then as the kids get older, they'll start start to find other things that also promote their self care. Like you talked about live music. I love the cuddling that was and washing trust TV. I'm gonna tell you right now, guilty pleasure. I mean this. I mean, hello, thank you, Netflix. You're the best thing in the universe, and Amazon Prime, okay? But not like Netflix, yeah, you know, this was what it is. And then the other thing is, you said talking about painting, drawing, about screaming into the universe, about our small victories and our challenges related to our conditions. And so I think you have to, I think it's so therapeutic to be able to be angry about the things you want to be angry about and then move on, like, right? I'm going to verbalize and pissed right now. Excuse me. Beep, beep. But being able to say that because otherwise it's just false. It's not being authentic to themselves, exactly, exactly. I have
Unknown:a real problem with toxic positivity. Positivity is fine looking, you know, on the bright side, but there you it can become toxic, and so it's okay. I mean, I could say all day long it's okay to not be okay, but don't get stuck in it, you know. And how do you do that? You find the things that make your heart
Natalie:sing, hmm, I see music always comes back to music. Okay, I have one last question, and then, and then we're gonna be besties forever, because this makes me so happy. Okay, so this is always my favorite question, what is your favorite guilty pleasure? What is the thing that you do just for you, that you love to do just for you. You're not sharing with anybody.
Unknown:Oh my gosh, my ice cream. That's number one. I had to pick one. You can
Natalie:have multiple. You can have multiple.
Unknown:What is your favorite guilty pleasure? Honestly, I probably my ice cream, mint chocolate chip ice cream. I mean, so much so, like, I have to stick with this one, because even at my work, someone bought a tub of it for me. How do they even know that I like my chocolate like I must be obsessed with it, if even my staff is buying me. I was like, you know, so that must be my thing. My ice cream definitely do not eat out of my ice cream bowl, because I might snap on you, but I would have said, like going to music shows, but now that's what we do together, right? So, yeah, that's my guilty pleasure. I mean, spending way more money than I ever should. I'm going to shows and then eating ice cream afterwards. You
Natalie:know you're gonna spend your money on stuff, spend your money on on experiences. There's all kinds of things that you can buy, but the things get thrown away, and so the times that you've been together, and honestly, you said Melissa Etheridge and Indigo Girls, you had now went to a concert at Indigo Girls about 15 years ago, and we, I mean, that's And the funny thing is, is like, and she bought me a goat the other day, and it's not a real goat, it's another real goat. I was so jealous. She has no clue that it's right beside me, and she said she bought me this goat, and it's because I make the goat noise.
Unknown:It's also, I think she's the greatest of all time. Yeah,
Natalie:clearly, I'm like Tom Brady, but blonder,
Unknown:we're now like absolute besties. Yeah. Well, I did have a goat one time
Natalie:when I ran a treatment facility, I had to heed the goat. But he was, he was, yeah, he was pretty great. But I will say this The times I will. I love my goat, but it is the time that I spend with my sisters that actually is the most meaningful, right,
Unknown:right? I mean time with the ice creams also, but I actually like it better when I was with my people. You know exactly.
Natalie:So why not? You can find your guilty pleasure and your best,
Unknown:your tribe.
Natalie:This has been so much fun. Trisha, I'm so like, happy as a lamb, starting off our day, right? That's my answer, yeah, you started off our day, right? I thank you so much for being with us, and really appreciate it. Appreciate all the sharing of the knowledge and all that greatness. Thank you for having
Unknown:me. This was a lot of fun. So maybe I can come back some other time.
Natalie:And when I come to Chicago, I'm coming up and eating pizza, and you'll have to tell me exactly where I need to go, and we'll go eat ice cream, go to a concert. Because for sure,
Unknown:all of for sure. I mean, I want go big or go home. So we were, can I make you even more jealous. We were in the second row. Ready? Second row? Yeah. I mean,
JJ:were you singing the song? Oh, everything.
Unknown:They were looking right at me. We were like,
Natalie:they knew you. She was like, we should bring her up on stage. Yeah, bring her up and let her be one of the backup girls
Unknown:I know right now. You know why I'm in the second row, right? All right. Well, thank you for having me. This was so much fun.
Natalie:Absolutely. Thanks so much, Joe. You wanna close this
JJ:out absolutely, Natalie, until we confess again, we will see you next time. Bye, bye.
Natalie: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 the 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 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 expressed written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.