Caregiving Youth: A Powerful Voice from the Next Generation

At just 18 years old, Kaylin Jean-Louis has already taken on the immense responsibility of caring for her grandmother with Alzheimer's disease. Her story is a powerful testament to the resilience and wisdom of caregiving youth, hidden in plain sight. From a young age, Kaylin has navigated the challenges of her grandmother's declining health, helping her mother with daily routines and advocating for her needs at school. Despite the difficulties, Kaylin has found solace in her passions, such as marching band, which provided a much-needed safe space to express herself.

Kaylin's caregiving journey has not only shaped her personal growth but has also inspired those around her. She has openly shared her experiences with her peers, breaking down the stigma and isolation often faced by young caregivers. Kaylin's willingness to be vulnerable and her desire to support others in similar situations have created a ripple effect, connecting her with like-minded individuals eager to learn and lend a helping hand.

At the heart of Kaylin's story is the deep-rooted family values that have been passed down through generations. Her grandmother's example of selfless service and compassion has instilled in Kaylin a profound sense of purpose, driving her to aspire to inspire others. As Kaylin continues to navigate the complexities of caregiving, her unwavering spirit and determination serve as a beacon of hope for young people facing similar challenges. Her story is a testament to the power of resilience, empathy, and the transformative impact that caregiving can have on one's life.

About Kaylin:

Kaylin Jean-Louis is not just an 18-year-old third-year Broadcast Journalism scholar from Tallahassee, Florida. She is a dynamic force for positive change, embodying the spirit of compassion and service in everything she does. With a humble yet powerful mantra, "I don't want to be famous, I just want to make a difference in people's lives," Kaylin is making an indelible impact on her community and beyond.

Born and raised in Tallahassee, Kaylin discovered her passion early. She founded Kaylin's Caring Konnection, Inc., and the Youth Care Too! Movement, advocating for young caregivers.

Kaylin hosts "Inspiring Moments with Kaylin" on Hallelujah 95.3 FM and "Feel Good Vibes & Motivation" on 90.5 The Flava. Her ultimate goal is to inspire future generations to unlock their full potential and become award-winning multimedia journalists who empower others.

The sisters proudly partner with the Caregiver Action Network. CAN's Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.

Transcript

Natalie: 0:03

Hey guys, it's your favorite. Sisters here 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. Today's episode is part of our special series, caregiving youth hidden in plain sight. We're partnering with my care friends to spotlight the millions of children and teenagers worldwide who are providing care for a parent, sibling, family member or loved one. Before we start, I want to remind you to go to our website, confessions, everelectincaregiver.com and sign up for our newsletter and connect with us on your favorite social media platform. Now let's jump right in to today's youth confession.

Kaylin: 0:56

Hey, Natalie,

Natalie: 0:58

how's it going?

Kaylin: 0:59

You know, it's going great. And here's the funny thing, we haven't recorded a podcast in like, two, two weeks, three weeks,

Natalie: 1:06

it's been a minute, but I don't want people to think it's because people unfriended us.

Kaylin: 1:09

That's true, but I'm so excited to be on podcast.

Natalie: 1:15

I am so sorry. Kaitlyn, oh, you know what? We have a guest. We have a guest, but this is a special series. We're, we're in the middle of our caregiving youth, hidden in plain sight, and we have, like, we have a powerhouse of a guest. And I am, I almost feel like I need to break into song. I started singing earlier, like just the three of us.

Kaylin: 1:40

I warned you, Caitlyn, I warned you if we try,

Natalie: 1:43

ooh, look at Caitlin's Caitlin's dancing too. She's like, Go girl. I need you to tell us and our guests, hold

Kaylin: 1:51

together.

Natalie: 1:52

Let's talk about Caitlyn, because she is amazing. I cannot wait to talk to her. Yeah,

Kaylin: 1:56

yeah. So I am going to tell you that I Caitlyn, I'm honored to have you here, because I know the very first phone call that I had with you, I was like, Okay, another sister. Love her. I am truly honored to introduce Kayla and Jean Lewis to the show. There are so many parts of her life and her story that are going to touch you. This is a story about Alzheimer's dementia. It was a decision to move in with her grandmother as the disease progressed, she took on another caregiving role as another family member was introduced into their life, basically with Alzheimer's dementia. This is something that she shares with us, is joy, sadness, anxiety and uncertainty. And here's the here's kind of the story on it. Natalie, she's 18. She'll be 18.

Natalie: 2:44

I'm gonna tell you, if you were to read her bio, you think she was 40. She's an old soul.

Kaylin: 2:50

She she knows. And so I want people to know, you know, don't be like, Oh, she's 18. She doesn't know anything. Turn it off. No, because no matter how old you are, Kaylen, story is going to touch you, Caitlin, we are so happy to have you here with us

Unknown: 3:06

today. Thank you so much for having me. I'm so excited. I love the energy and the vibes already. I just am so excited to share my story.

Natalie: 3:15

This is going to be so much fun. Well, so typically we start, I always like to say, Okay, you were born, and then skip to caregiving. But I'm like, No, literally, you were born. You were so young, and this is so different for us. You know that you're the first of our guests that are young guests. We've never had a guest this young before, and we've had people who have come on and talked about caregiving experience, and it's interesting Kaylin, because I did not self identify as a caregiver until after my husband's illness. But even more, I didn't self identify as a caregiver for my grandmother. After my grandfather passed, a lot of people stayed with her. She was she was in her 60s, but after he passed, she needed someone to kind of start to help her out. And when I was in middle school and into high school, I stayed with her almost five nights a week. And now mind you, there was lucky charms involved, and so I'm going to tell you right now I was staying there. She would, I would eat the marshmallows. She would eat the other rest. I think that's fairly gross, probably now, as people are like, Oh, because I throw the rest back in, I didn't tell them. I didn't tell any of our my cousins that I did it, but it was just our secret. But you know, there's something special with granddaughters and grandmothers, so tell us about your family. Tell us, let's, let's get going.

Unknown: 4:41

So Alzheimer's is definitely something that is not new to our family. Actually runs through my mom's entire family line. So my grandmother, her mother and father, both had Alzheimer's. She cared for them before she ended up getting diagnos. With the disease. But I think out of all of her siblings, she has, she had two sisters, and I think about three or four brothers, but out of all of them, I believe only one of them does not have all sides. And so two of her sisters, they actually passed in the last two years, and I think she's the only female sibling left still living with the disease, but her entire life, she's been around it. Obviously, the more and more myself and my mom learned about it, we were able to take a different stance with it. But when I was about 10 or 11 years old, my grandmother started showing signs of simply forgetting people's names, doing daily activities. And obviously, I'm 1011, years old. I'm not really looking at that in La, La Land, everything is just sunshine, rain goes on my school, nothing else matters. And then my mom tells me that, hey, we have to go move or bring granny home with us. Every now and again, we have to start going to her house a lot more every now and again, because she needs help. She needs us to take care of her. And so it would be mornings on the way to school, we stopped by my grandma's house, so we'd eat breakfast with her. My mom makes sure she gets her bath, and then my mom take me to school, get out of school. We're going back to Granny's house, making sure she's had food, she's clean, I'll do my homework or stuff while I'm at Grandma's house. And then we go back home, and we repeat the cycle over and over for about a year. And then on the weekends, we would bring her to our home, and we'd have her stay the night, because as a disease progressed, we used to leave her there throughout the week, but she'd just get really disoriented and have moments where she just didn't recognize where she was, and it was more comfortable and fitting that she would come stay with us, so she spend the weekends with us, she'd go to church with us. We'd all have that routine, and then more and more as the disease progressed, that was when my mom kind of made the final decision of, okay, we need to either she's gonna move in with us, or we're gonna move in with her. And because she was so familiar with her home that she had been in for years, my mom saw it fit that we move in with her so she didn't have to be completely changed to a whole new scenery and place that she was not familiar. Okay, so we move in.

Natalie: 7:22

Okay, hold on, I'm like an Interrupting cow. Caitlin,

Kaylin: 7:25

she is.

Natalie: 7:26

I'm totally an Interrupting cow because we're gonna, we're gonna slow this down a little bit. So it's in your family. Family knows it, and so growing up, did your mom talk to you? Because you have it, is it you, you have a sibling. Tell me about, yes, okay, you have an older, eight years older, and so you and so she hasn't moved out yet, maybe. And so you or no, she,

Unknown: 7:55

yeah, she, she doesn't she? When I was starting my or we started seeing this. My sister was in end of high school going into college, so she had moved out and was at college,

Natalie: 8:08

okay? And so did your mom sit down and talk with you and your sister, or even your sister first? Because she would have been she's she's got a good age gap because JJ. And I know that JJ looks considerably older than me. She's only two years older. You're welcome, Caitlin, and so you're welcome, Jay. But did she talk to you about what Alzheimer's was? Did she say, like, what's the words that she used to kind of help you understand? Like, because I like, mine was memo. We called Bird, my grandmother's name, we either called her bird or memo and so, so you called so we call her Granny. So did she sit down and talk to you about granny and like you're gonna see grannies? Seems like she's getting a little different, and this is how we're gonna do it. What was that conversation was like for you? Well,

Unknown: 8:56

I would say my sister, honestly, they saw that more firsthand, because I always say that my sister got more of my grandmother and I got more of my grandmother as a caregiver, of me caring for her. And so growing up, my sister was always right under her. And there was one moment where she was driving in the car with my sister, and she was supposed to, you know, kind of opposite day. So the light turned red, and she was trying to go, and she had to tell her, like, Hey, you have to slow down. Or when it got to a green light, she would just stop there in place, and she had it moved. And so that's where she started talking to my mom about some of the things she was seeing now, my mom, or so came to me and said, Granny has Alzheimer's. She, of course, explained to me that she may forget some things and she may not understand exactly what's going on. She told me the basis of what would happen, especially when there were moments where there where she was disoriented, I'd be like, well, how come she doesn't understand that we're home, or different things like that. And she just have to say. A she's not going to understand. We have to go into her world. And she told me the basis a little bit. But I also did my own research as well, because I've always been that type of person. If I hear something that's unfamiliar to me, I want to research it and understand it so that I can, you know, better, deal with it and have the right tools and resources to understand how I could better help my grandma.

Kaylin: 10:21

You know what I heard was you saying, Okay, you went before and you went after school, and your mom to me, first of all, you guys as a unit, you guys together, you and your mom are like superhero team, and your mom made that sacrifice as well to say, Okay, we're gonna do this. Because it's, it almost sounds to me like it's the right thing to do. But did you have those discussions? I can't even think about what grade 11th grade is, but what is that like? What was that fourth fifth grade, I guess,

Unknown: 10:47

going into ending fifth grade, going into sixth grade, wow.

Kaylin: 10:50

Did you ever like when you go into school? You know? Did you ever people are like, Oh, I got up and I did this, and you're like, Oh, well, I just made sure that my granny, you know, we went by and Feder breakfast. And did that? Did your did your classmates know what you were doing even as you got older? Did they know that you were so involved in her life?

Unknown: 11:07

I think that when I was in middle school, because of the fact that, of course, I had my moments where I would help my grandmother in the morning, that was my daily routine. But they were also my mom always made sure that if I wanted to do something in school that caregiving wouldn't significantly impact that. And so when I was more so in middle school, I didn't really say much. I mean, I might have told my closest friends to me, but they didn't fully understand what caregiving looks like or what that meant. And so for the most part, it was I'm just going to sit home with my grandma, or I'm going to check in on my grandma, but when I got into high school and I started really advocating more for showing more of my friends and just people in general, what caregiving looks like on social media, they were able to see a whole nother side of me that they never knew, because they see me I'm always been involved. So they see me in all these different clubs in school. They see me out talking to everybody showing up every single day with that attitude of, okay, let's make today better day than yesterday. But they didn't know that I was caregiving until I started talking about it more and sharing with it more. And I actually found that the more that I shared it with my friends, a lot of them were like, Okay, I'm actually doing this too, and I didn't even know that this was called caregiving, yeah, or I had a time where I was in school, and because I was a caregiver, one of the teachers knew that I was a caregiver. There was actually another student who was caring for her mother. She didn't have Alzheimer's, but she had cancer, and she had nobody to talk to, and they connected us so she'd have some other level of support. So I would say that talking about it more is something that I've loved being able to do, because I'm realizing the more and more I share, there's people just like me every day who are young, going through the same thing, and they just don't know where to look to Well, I

Kaylin: 12:58

bet that. I guess for me, the message is different coming from you, though, Caitlyn, at that age, sharing it with a friend, a peer, as opposed to, you know, a lot of times they say, go to counseling, and that's great for younger, you know, for that younger age, but to hear it from you and that same story, hey, we're both going through this, instead of hearing it from somebody like me 50 and saying, you know, it's gonna be okay, I went through this 40 years ago, but your voice, I just that kind of wisdom that you had at that age is just unbelievable to me, that you were open and sharing it. Thank you.

Natalie: 13:32

Let me ask you this, because you just mentioned clubs and then you mentioned your teacher. So did you play sports or activate? Or activate? Did you participate in activities in middle school, like as you started going after school, did caregiving and your mom go in to support her, and you going along, because I hear you saying, I did my homework when we were there. I'm assuming you probably helped out with little things here and there. If your mom said, Hey, go grab that, or do this or do that. It starts off small. Trust me, I know it starts off small, but did it impact your ability to participate in extracurricular activities?

Unknown: 14:12

I would say that for the most part, I didn't really have many hindrances. Of course, there are some things that were there, like I was heavily involved in marching band from about sixth grade all the way up until my ninth grade year, when covid happened, and so I was in Color Guard. And when I was in Color Guard, we'd have practices and all the time. So I was always able to go to practice, always able to perform in marching band shows and go to the games. That was my fun and safe space, even through the caregiving, and a lot of people didn't realize how much of a impact that had on me, because, of course, there's not the greatest moments when you're caregiving, and it can be hard, especially I'm like 1112 at this time trying to figure myself out, let alone try to figure out how to provide better care. There for my grandmother, so that was a safe space for me. And the only thing that kind of impacted was I knew that some games my mom wouldn't be able to be there, because there'd be she'd have to be there for my mom. And if there was nobody who could cover her to relieve my mom, there would be times where, every once in a while, she would make sure she has somebody just to be there right at halftime, so that she could see my halftime performance, and then she'd go back home and care for grandma, but she was always allowing me to be a kid and still help her out and still be able to be a caregiver. But I also had moments where I was in marching band. I was in a lot of the academic clubs at my school, like mu alpha, theta, I was in Future Business Leaders of America. I helped out with a lot of the clubs on campus that needed help with coming up with dances. One of my friends actually was a president over a club called Building incredible generations. And with that, they celebrated just unity in a whole and being able to look at different cultures, and so I was very involved in campus, but a lot of people still didn't know that, even outside of me being busy, I still would go home and care for my grandma. Did

Kaylin: 16:10

you sleep ever? I'm just curious. I

Natalie: 16:12

just wondered. Actually, she slept.

Kaylin: 16:14

I'm gonna make an assumption here your mom, did she work full time as well? Did she wish, I'm sure you say she worked, yes, yeah,

Unknown: 16:27

she she started off. She was working at FSU, and so she would go to work a lot, but once we more so I think it was either right before covid Or, yeah, I think it was right before covid, she actually got another job, but that job now allows her to work from home. So that was actually really good for her, because she's able to work full time from home and not have to worry about, okay, I need to go back and forth. I'm in the home. I'm able to, you know, there's still caretakers who come during the day, so my mom can't work peacefully, but at the same time, she still has comfort and being home, being able to watch my grandmother and not have to go back and

Natalie: 17:04

forth. I'm gonna, I'm gonna pause this for one sec, because I love your mother too. Like, I love your mom now, and I like, I'm gonna tell you there is a reason Caitlyn is who Caitlin is, and it is very evident she comes from a strong line of women, and so I'm going to take a break right now and we'll be right back. I don't know about you, but my inbox is always cluttered with useless emails, but there's one I always open the Confessions of a reluctant caregiver newsletter, you may say, Natalie, what makes yours so special? Well, I'm biased, but don't just take my word for it. Here's what our subscribers say they love. First, it comes once per month, and you can read it in under five minutes. Next, you'll find amazing tips and resources to use in your everyday life. And who doesn't love a recommendation. These sisters do, which is why we share sister approved products and discount links to save you time and money. And of course, your first to know about the upcoming month's confessions. Just like our show, you're guaranteed to relate, be inspired. Leave with helpful tips and resources. And of course, lab, go to our website, Confessions of a reluctantcaregiver.com. To sign up for our newsletter today. Hey everybody. We're back here. We're

Kaylin: 18:34

talking with Kaylynn Jean Lewis, and we're talking about caregiving youth, and we toss out there again. Ken, you know you're 18, but she also mentioned choosing safe spaces, and that's an interesting word. You were talking about marching band, Color Guard, where else during all this time? You know, because you do go through this during high school. At what point did a second person come into this that you start caring for? Yeah,

Unknown: 19:07

well, we were caring for my grandmother for about a year full on, meaning we moved in with her, and then my mom gets a call from a family member down in Central Florida, and they're like, hey, somebody needs to come take care of her, because if they don't, we're going to have to place her in a home. And of course, no disrespect to any homes or anything like that, but my mom, because of the fact that we've been caring for my grandmother and none of her, because this is the other part that I didn't get to share. My great grandmother is actually not by blood, but she grew up with us as if she was blood. So she's always been like an extension of a grandma to my mother and her children lived in Far, far place from Florida where she was and they couldn't just immediately come down and get her so because my mom was so close, she knew. She just had to, and so they end up bringing her there. We become a caregiver too. And as you can imagine, it's a lot, because at that point, she's about 95 years old, still moving around like she's 80, but like 95 years old. And we have a 95 year old. My grandma, I think, was in her 70s at that time, but they grew up as childhood best friends, always helping each other. So it was always funny to see my grandmother. She has Alzheimer's. She doesn't remember everything, but she's trying to take care of my great, great grandmother while we're taking care of both of them. So it was so funny to keep seeing that, but the safe spaces were really my friends in the clubs that I was in? Because you mentioned earlier, even saying, well, your friends don't know much about it, different things like that, but I've been blessed and lucky enough to gain friends in high school that they did not understand what caregiving was. They didn't know the nature of it, but they gave me the room to just be and to feel and so I could simply say, I know y'all don't understand this, but can I have five moments to just vent and say, this happened, that happened, and I'm able to dump everything, and then at the end of the day, they're like, Hey, we don't understand the situation, but we're here for You. I my friends themselves. Now that I'm in college, of course, you know, when you go from high school to college, some of your friends stay, some of your friends go. But I've gained, I still have some of those high school friends, but gained even more people in college now. And even those people are like, Okay, I don't know much about caregiving, but I want to learn. Because if I'm ever in the case where you're sick or I'm at the house. I want to be able to help your grandmother, one of my best friends. She's like, What do I need to do? Tell me what to learn? Because I come over to your house and I don't want to just be here, sitting here, as if I don't know how to give care to your grandmother. I want to help too. And so I'm lucky enough to have those friends who give me the room to be, who give me the room to feel and I even have just journaling. That's a big thing for me as well. I'm a journaler, and so I write things down and I have moments. Okay, today was just a challenging day, or there's something that I can't just spew out right then in that moment, but I need to get it out my head. I have my friends, I have my journaling. I have those safe spaces to simply be me. You're so

Kaylin: 22:24

far ahead. Like that is like all ages. There's you know, you talk about room to be and needing to vent. And now that we give each other that space, it's kind of like I just need to call I don't want you to talk. I need to yell at you for just a minute, and then I'm done. But also choosing and recognizing where those safe spaces are, because it's hard to find those places, and the fact that you've identified those. Kailyn, I hope that for everybody that's listening to find that safe place that you feel and I love to journal too. So I have to have colorful pins, though I have to tell you that. So

Natalie: 23:00

she's, she loves pins.

Kaylin: 23:03

So I like so

Natalie: 23:06

you so Okay, so are you in high school or middle school? When you guys move in with your grandmother?

Unknown: 23:12

I was in middle Okay,

Natalie: 23:14

so you move in so you, you and your mom upended your life and moved in with her, which probably was just like, Okay, this is what we do. This is just what we do. You said that your grandmother took care of your great grandmother, no blood, but doesn't matter. Because I don't, I believe family is way more than blood anyway, and so I just, I just believe that I just everybody becomes that's why Kaelyn, you're our honorary sister. You automatically are our sister now, and so, you know, she's, oh, that is true.

Kaylin: 23:44

I don't want to go

Natalie: 23:45

great grandchild for you, Jay, but anyway, we'll get past that. Caitlin, but seriously, was caring in generational What do you think that your grandmother learned it from her grandmother from it was it? Is this a family kind of thing? Is, like we take care of our people. Yes,

Unknown: 24:02

it really is one of the core values that I think was instilled in every single person in our family, whether we do anything or not. Because even if it's not simple as what we're talking about now, caring for someone physically, my grandmother really honed in on that component with all of us, that yes, we will get stuff for herself, but she has always been a giver in the community, even with dementia. She used to be a seamstress, so several people in Tallahassee know her from her work, and they would come to her house get their clothes fixed. If she ever saw people who were on the side of the road or people who just didn't have anything. She was the type to cook a meal and go out and give it to people. She was the one that really showed us that example of this is what caring for others looked like. And so it passed down to my mom and her siblings. It passed down to my sister and I. And so it's really true. Go down into all the things that we do, no matter what sector of career we're in, all of us do something that cares for people. My sister's in social work. She wants to care and help children. I am in journalism, in the media, wanting to share a greater light onto those who are caring for others, but also show the good that's happening in the world. My mom works for disability rights Florida, advocating for those who have disability to be able to receive the rights that they want to have. There's other people in my family who are giving back. We all have that caring aspect in us that's been engraved and it's allowed us to flourish in the best ways possible, because my mom this is kind of funny, but even on Christmas and Thanksgiving, like my mom was big on No, yo, we'll open our gifts after we help somebody. Like there were literally times where we could not open our presents. We could not do anything, we couldn't have a meal. We'd have to go out to the homeless shelter or someone else and help someone first, and then we would enjoy the things, because they're the greatest thing that they always taught me was that no matter what we have the things that we have because we're blessed to have them, but there's still people who don't have that every day, and we should never take that for granted.

Natalie: 26:17

I mean, I am tearing up, and, you know, Jay, I'm like a hard nut to crack, and I think Kaelyn, like you have give the gift that you have, that your family has has given to you and passed to you you are passing to others. It's just I have not experienced a young person. I've worked in the mental health field for 25 years, and to have someone so insightful to have someone that says I believe in this, and not not only, not only am I told it, but I've absorbed it, because you went on so you in high school, so now you're caring for your grandma. You're living with your grandmother and your great grandmother and your mom. And you think, and I'm assuming, that you're, you're taking on more care responsibilities, like your activities of daily living, like helping you know that we'll talk about that a little bit. But you're going to school. How's school work? How's extracurricular and, oh, and then you start all these things. You start a nonprofit, you start all these things. Like, you're like, I've got a lot of free time. So let's start some things. So how does that I mean, again, I'm not really sure she sleeps, but because you said to us before we got started, because I actually said, Are you actually 18? Because you're in your third year, technically in college, because you got your associate's degree at the same time you were finishing up high school, correct? Yes, ma'am. So how does that all work in trying to manage because right now, I think you are the most structured, managed, like, time person. Like, what has this helped you do being a caregiver? Like, what are skills do you say, Hey, I got this from being a caregiver. Let me tell you what I'm really good at. Like, yeah,

Unknown: 28:04

caregiving. Oh, it teaches you so many lessons. I mean, obviously you grow up a lot faster than those around you, because you're accepting more adult roles. You know, you're my mom. Calls it not even just my mom, but different people. They call it role reversal, in the sense that the person that you depend on is now depending on you. And so I think one of the first things I was taught was really how to, you know, aside all other things in the world, caring for that person, because while everything else is going on, this is somebody who depends on me. So it taught me, of course, that accountability and dependability, it definitely has taught me more adulting. I mean, as you said, being in the place where I have to stay organized, I have always been an organized person, but a calendar and Google Calendar and planners, the actual ones I can write in. That's how I keep a list of everything I can do. I have a board. I write down my to do list for the month, my to do list for the week. I have to visually see everything. But I've always been big on, okay, I'm gonna make everything happen. Because, like y'all said, I'm very busy. I like to be involved, and I like to, you know, enjoy life, and still also be able to care for my grandmother, and so I balance all those things that way. I think also caregiving is really taught me how to deal with the more adult emotions that a lot of people don't feel until they get to those older ages. I mean, dealing with loss, dealing with those moments where you don't necessarily know how to solve it, or even with Alzheimer's, you can't really solve it. There's no here right now, and so having to go through that emotional battle of saying, Okay, you have to teach yourself how to care for yourself, even when you're caring for somebody, you have to teach yourself how to not. Hold all your emotions in so you don't take it out on the person you're caring for. You have to teach yourself how to talk to people who don't understand it, so that you can be free from it, that you're not sitting here holding on to so much. And I think even from those moments, it's helped me, not just now, but it helps me in college. It helped me in friendships, it helps me in relationships, it helps me know a lot more things about myself. Early on, I'd say that caregiving, really, I think, has allowed me to see myself in a whole nother thing. It's put my perspective on life. Because a lot of people get in situations and they see things only from their perspective. But because of caregiving, I've been so wired to, okay, this is what I'm thinking. But what is my grandmother need? Or what's the opposite thing that I need to get from this? My brain is wired differently because we constantly have to go into her world, even if it doesn't make sense. So when I look at different things in my life, I see things from both perspectives. Okay, I feel this way, but what is the other person possibly feeling? It's taught me a great deal of empathy. It's a lot. It's definitely, I think I had caring already with it within me because of family, but it's increased it so much more. And I just think it's given me just a well rounded aspect on life and just feeling happy and never taking for granted what happens, because I've seen the crazy things that happen with Alzheimer's, how much the person can change, and it makes me grateful every single day that I can live the life I want to live and do what I want to do. Because watching my grandmother in these places, there's several days where I wish that I could just take that from her. You know,

Natalie: 31:43

I, for once I think, JJ and I are sitting here. We literally are just, it's not that we don't have anything to say, Kailyn,

Kaylin: 31:51

I am just, I'm actually just dumbfounded. I have to say that because you you bring up things like empathy, about never taking anything for granted. And I think about the fact that we've been taking care of our mom, truly since 2019 she's had Parkinson's Since 20, for almost 20 years. But I think about how I deal with that every day. Kaylin trying to be better. And you said something about making sure you know, going into her world, your grandmother's world, but making sure your voice and your tone and understanding Look at that. And I think I just am just in awe that you recognize that, because I struggle with that at my age, and it's a reminder every day that, Jay, you got to pull it together. You know, listen to your patience. Yeah, exactly.

Natalie: 32:41

I asked you to have patience with me every day. Caitlin, I'm gonna tell you, and she doesn't. But seriously, I just, I think that you what you're what I hear from you is you're saying I've I, I have gotten these skills whether I wanted them or not. It didn't matter, right? Because you didn't know if you wanted them or not. Do you know what I mean? Like they were ingrained in you, they you were raised with them, and you recognize the value that the hard. Because I'm assuming some days are harder than others. I'm assuming it is not because you are, like, a really positive person. I mean, do you ever have those moments where, oh, I'm going to take us into a break, and I'm going to come back. I'm going to ask this question. So think about this. Do you ever have these moments where you're like, I did not sign up for this? We'll be right back.

Kaylin: 33:32

If you like confessions. We have another podcast we'd love to recommend the happy, healthy caregiver podcast with Elizabeth Miller as a fellow Whole Care Network podcaster, we love how Elizabeth chats it up with family caregivers and dives into their caregiving and self care strategies, just like us. Elizabeth believes that family caregivers are the experts in caregiving. Beyond the informative conversations, Elizabeth reveals the tried and true resources and practical self care tips that empower caregivers to prioritize their health and happiness. You can find the happy healthy caregiver podcast wherever you download your favorite podcast or go to the website@happyhealthycaregiver.com Hey everybody, we are back here with Kaylynn. Jean Lewis, she is, I'm gonna tell it again. She's 18, but we're talking about caregiving, of course. And Natalie has asked a good question. It is a good question. It is a good question because Caitlyn is so positive and you have such an outlook. But do you ever have those days where you're like, I did not sign up for this. This is I would like some money back. This was not on my bucket list of things to do.

Unknown: 34:46

Yes, I do. I I'm not going to say any spoilers, but to anybody who's seen inside out too, because they've played the trailer over and over, if you saw the scene where everybody's asking joy. What do we do? What do we do? What do you do? And then the person calls them delusional, and she's like, of course, I'm doing I have to always be happy for you all, and you always want so much for me. But that's literally how it is. There'll be moments where I genuinely do try to be a very positive person, because I understand that, yes, I'm gonna have those moments, and I give myself the space in the room to have those moments, but I also understand that I just like being happy. I choose my happiness, and so I choose to have joy, but even in those moments where it just seems like yes, I didn't sign up for this, or it's a lot, there's especially right now, even with my grandmother, she's in the more so severe side of all assignments, where she can be a lot more combative, and she can have moments where she's just very disoriented, and of course, you know, she loves her, but in that moment, she's just not happy right now. And there's definitely been several moments where it's just like, I wish I could talk to my grandmother, just my grandmother, and get some wisdom now, you know, every now and then she lets out random pockets of wisdom that we just listen to, but they're definitely always moments where I'm just sitting there and I'm just like, I wish I could depend on you, and I wish I could have those moments where I could just get a hug or lay on you and be like grandma. I need you, or I need these moments to be with you, especially in college, because his last year of college has just been a lot. But even in those moments, I think that those days that I have, I have always kind of been taught, even with my mom, with my parents, with my sibling, with just my friends, I'm been given the space to have a moment, not allowing that moment to turn into months, but they give me the space to feel what I need to feel in that moment, and then after I feel it, then it's okay, let's move business as usual, because I've always been taught that you can have a moment, just don't let that moment go from days into months, into years, and then you're just stuck in the same place because you don't want to move on. And that's what caregiving consistently teaches. Because it's a new thing every day, you just you never know what you're going to wake up to, what's going to happen, and you just have to sit there and say, Okay, this is a moment. This is not great, but let's try to find something in there that we can be joyful, something that we celebrate so it makes every day that we have not just a day of just constant sadness and constant grieving. I was actually we had a conference recently that we were educating people about Alzheimer's, and somebody on the panel ended up saying that Alzheimer's happens to be one of the longest deaths, in the sense that you're constantly grieving the loss of something every day. And that's very sad, right? Like to think about that. That's very sad. But if you don't find those moments of joy in it, it can literally take you into deep depression if you don't deal with it. So in those moments, I do try to make sure that I feel the feels, but then I also, even if it's the next day, take that moment to say, Okay, let's redirect and try to go and look at this from a different perspective. Let me ask you this. I'm

Natalie: 38:25

gonna, I'm gonna interrupt you, Jay for a second, because I've got, I've got a couple of questions that I wanted, that I'm mentally thinking about. I jotted some down, because I did jot a couple of questions down. What message would you share with other young people who might find themselves in caregiving roles, like, what would you tell them? It's new to them you just found out, or especially with a young person whose family member, whether it's Alzheimer's or ALS or Parkinson's, some kind of chronic disease, and they're being asked to do more. What's your message that you share with them?

Unknown: 38:59

I would tell them, simply, be kind to yourself. It's not an easy thing, and a lot of people, when you're young in your place in this situation, everybody expects you to have the answers for everything, but you're literally growing up yourself. You are trying to figure yourself out. You don't know what you're doing in life, so be kind to yourself and give yourself grace. But also do research when you get placed in that position, because research is your friend. A lot of people don't want to look at everything, but I promise you seeing more ways to help you deescalate situations or care it helps. I would also tell them to find those close to you, like I said earlier, who are going to give you the space and the room to simply be because you're going to need them. And I'm not saying people who want you to talk, but have friends who are like mine, in the sense that if I call them, I'm like, Y'all, I've had a day. The first question they asked me, Do you want advice? Do you want me to listen or do you think? And they asked me that question so that I'm able to give them the space, because they're going to be days where you genuinely you don't want to hear anything from anybody. You just say, I just need to get this off my chest, because it's in my head. It's too much going on. Yeah, get those people who you can listen to and you can talk to and find those if you because I know a lot of people don't have support systems, but try to see if there's anything locally, and if not, the biggest thing, I think caregivers, especially young people, you want to keep everything to yourself, but it's okay to share that with somebody else and be able to create that support for yourself, because if you don't have it, if you don't go seeking for it, you will deal with those days alone, and you will have those moments where you don't understand everything, but it's okay to say that you need help. It's okay to say that you don't understand everything, you don't know everything, and it's okay to reach out to someone so that you can get help. So I'd say those tell me

Natalie: 41:06

about this. How is your relationship with your mom? Because I'm gonna tell you, it's very easy to get focused on. I've got X, Y and Z tasks to do. I've got all the I just think that your schedule is your plate is probably very full. Your mom's plate is very full. And how does that relationship between you and your mom? How do you and your mom find time for each other, you and your siblings? A way to allow for that relationship to build? Because it could be, I'm going to tell you, it's very easy to focus just on the person I'm caring for and I not only lose sight of myself, but I can lose sight of my relationships and lose people. A lot of people lose friends, lose loved ones, no matter what age you are, what would you say around that we

Unknown: 41:54

were intentional about everything? That's the big thing. I think it's definitely changed over the years now, because I've progressed in just where I am in life, but when caregiving first started off, because we would have moments where my mom just needed a break, or I'm at school, but she's still dealing with caregiving, or I'm doing all this in la la land, and she's still dealing with things. So we'd have times where on the weekends, we have somebody come over that could relieve us, and we go do simple stuff, like go get our nails done, or we go out to eat and go get some food together, or we go to the movies. It's always been our big thing. We do chicken wings every Friday. So that's also something that we enjoy doing, just eating some wings, watching movies,

Kaylin: 42:41

date night with your Mom,

Unknown: 42:44

mommy daughter, date night. We have our shows. Even now that I'm in college. There's one specific show we watch all American together. She knows. I know when that comes on, even if I gotta drive from my dorm back home or we save it for the end of the week. We watching that together, we have things for ourself that we'll do to make sure that we keep that relationship going. And of course, now that I'm even more busy and I'm becoming more independent, we still find those times even working okay. If I'm at school this day, you're at work this day, let's plan the day we're going to go somewhere. I'll treat her to lunch, or she'll treat me to lunch. We'll do something together so that we're still maintaining that. Because you're right, there are moments where it's tiring after my mom's worked all day, she is sleepy and she needs that moment to rest after she's worked. If she's taking care of my grandma, she's pretty much beat, and so by the time she's doing that, she's resting, or I'm in my room trying to finish a homework assignment or trying to get some things together. So it's really about us. We've just been intentionally planning things, even when it comes to our friends and family, like we will have people and we'll plan out, okay, we'll do this. We actually recently hung out with a family friend, took them out to lunch for their birthday, and that was a nice, small, quick getaway for us to just go do something nice, spend time with each other, but it's all about us. We just plan it out because we value that relationship that we have together, and because we've both kind of leaned on each other. Obviously, I'm leaning on her because she's my mom, but you know, her leaning on me in the times where it's just been a very long day and she needs a moment to rest we've gotten I think caregiving is honestly brought us very close. A lot of people don't get to experience that bond with their parents, but I think once you go through something so challenging and crazy like caregiving. It really does bring you together in ways that you didn't know, because in those moments where things are confusing, all y'all have is each other, so you're just leaning on each other to you know, get through those challenging times.

Natalie: 44:54

Wow, man, we Jay, we're almost out of time for this part. We need like this. Hard, like we could talk with Caitlin for like another hour,

Kaylin: 45:03

I know. Okay, so, like, therapy, we

Natalie: 45:05

have to do sister questions. Okay, so, Jay, I'm gonna let you have the sister question. Okay,

Kaylin: 45:11

just so everybody knows Kailyn, like Natalie said she has a organization. She also has two radio shows, and in a sentence, what would you say is your goal? Caitlin, with this message that you're trying to get out to everybody, what is your goal?

Unknown: 45:29

Well, this is a quote that somebody else made, but I love it for my life in the sense that it goes I aspire to inspire until I expire, and that is my goal in life, because I recognize that there are a lot of people in the world who deal with things that nobody knows about. That's right. Caregiving has showed me that other people come to school, they live everyday lives, but then when they go home, life is completely different than what you imagine. It's not what you see on TV. It's not the sunshine and rainbows they're dealing with hard stuff right now. And so my goal in life has simply to has been to inspire people to keep going, to use my life as an example to other people that no matter how much is going in your life, you can take control of it and do all the things that you want to do. You can have moments where you're at a very high, then you're at a low, then you need a moment to chisel I want people to see that with everything I do in my life, I strategically and intentionally make sure everything I do inspires other people, not just because of the fact that I think I have to be positive 100% of the time, but I have little God siblings and little cousins who I've just noticed in the last year or two, who are looking at a lot more than I realized. And it makes me realize there are probably a lot more people doing the same thing. And obviously I'm not perfect. I'm not gonna do everything 100% perfect, but I do hope that my life will inspire somebody else to keep that dream that they have and to go after what they want despite all the odds that have ever been stacked against them. Wow,

Natalie: 47:17

I've got the last question, and it is not remotely what you're expecting. Are you ready? I'm ready. What is your favorite guilty pleasure? What is the one thing that you do just for yourself? Because I'm gonna end

Unknown: 47:31

watch TV and eat chocolate. I love watching Netflix. Girl, every time I put my phone on, do not disturb. At 10 o'clock every night, I will get in my nice pajamas and I'm laying down watching a TV show. And yes, sometimes there's a chocolate, there's a dessert, there's something I gotta have, something sweet, just to woo so I'm not talking to anybody. I'm just deep in my show. Wow, I love it. I

Natalie: 48:02

love this. This has been, I can't believe this. Time has flown away. But you know what? We're gonna stick around and we're gonna do after the confession, Jay, and we're gonna open that one up to everybody, because this is too good to not share, and it's we're just gonna continue to share on So Caitlin, thank you so much for being part of our caregiving youth, hidden in plain sight, because you are here's the thing, a lot of young caregivers are hidden in plain sight, but I'm going to tell you, you cannot be missed. You cannot be missed, my friend. So guys, until we until we confess again, we'll see you next time, and make sure you listen in, because we're going to do after the confession. We'll see you next time. Well, friends, that's a wrap for today's episode. Thank you for listening to our special series, caregiving youth, hidden in plain sight. And don't forget to visit our website to sign up for our monthly newsletter. Sign up for the free sisterhood advantage discount club, and of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again. You.