Unexpected! Finding True Love in Caregiving

Charisma Sydnor's path crossed with Cole's at a rehab center following his teenage spinal cord injury; their professional rapport blossomed into romance and they wed in 2020. Taking over from his mother, Charisma adapted to the comprehensive caregiver role, focusing on fostering independence for Cole while ensuring their connection thrives beyond her caregiving responsibilities. They openly celebrate their life together on social networks, challenging preconceptions about disability and relationships. Their shared narrative delves into the seamless transition from dating to matrimony, weaving in the complexities and dedication involved in caregiving. Charisma speaks to establishing a healthy balance of duties and intimacy, highlighting continuous dialogue, self-care, and an optimistic perspective as cornerstones of their unique partnership. She emphasizes that a disability is not a hindrance, but rather a unique aspect of a vibrant and fulfilling life.

About Charisma:

Charisma Sydnor, 29, has lived most of her life as a native of Richmond, Virginia. Before becoming an entrepreneur, she pursued her master’s in Occupational Therapy at Shenandoah University. 

The success of her and her husband’s business led her down a new and exciting path where she was able to use her platform for a broader purpose.  

Together they started their vlog to bring people into their lives, their relationship, to answer some questions about how they navigate the world with some of the behind-the-scenes stuff people typically don't see, and hopefully raise awareness surrounding accessibility and dating in a wheelchair.

Outside of their channel, Charisma uses her Instagram to share what it is like being a caregiver to her husband, as well as tips and tricks to maintain a healthy mind, body, and soul while caring for someone.

Connect with Charisma

Instagram: https://www.instagram.com/happilycharisma/?hl=en

Linked In: https://www.linkedin.com/in/charisma-sydnor-96632411b/

YouTube: https://www.youtube.com/channel/UCA5Zfb-OOm7eDHHa8iu9izQ

Transcript

Unknown: 0:02

Hey guys,

Natalie: 0:03

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 the inspired lead with helpful tips and resources and of course, laughs Now, let's get to today's confection.

Unknown: 0:28

Pays yay.

JJ: 0:30

Natalie,

Unknown: 0:31

how are you doing today?

JJ: 0:32

Oh, I'm having a great day, but I'm super excited.

Unknown: 0:35

Oh my gosh, why? Because

JJ: 0:37

we have someone on today and I don't really want to confess it, but I'm going to I'm a stalker of their page and their social media.

Unknown: 0:45

So do you think there is like a Is there anything like a restraining order on

JJ: 0:50

you? I hope not. We'll ask. Oh, that's

Unknown: 0:52

awesome. Hey, I'm gonna say I have to acknowledge my voice sounds awful because I'm losing my voice. So this is not a fourth sister. This is just me, Natalie. And so I apologize to everyone. You get my husky Stevie Nicks voice today. You're welcome. JJ, tell us about the amazing. Karissa Snider cut because I am so excited. You're right. I'm a fan girl too. And now she's officially a sister.

JJ: 1:19

Your voice you must had cough syrup because charisma siddur you're gonna like oh my god. Yeah. Charisma. I'm sorry, Natalie's had a lot of syrup. So that's

Unknown: 1:29

embarrassing. I actually had a lot of customers.

JJ: 1:34

So, I'm going to tell you about charisma because I'm so excited that she's here today. If you've ever heard of roll with coal, you know who charisma is. If you haven't, go find roll with cold charisma has lived most of her life in Richmond, Virginia. She is now a California resident. She's always had a heart for the medical field and has a degree in Exercise Science and was headed for a master's in occupational therapy. But then, there was November 2017, and something completely changed her path. Today's episode, I think is a love story mat is a love story and a caregiving story. Yeah, charisma first crossed paths with her husband Cole at Sheltering Arms rehabilitation center where she worked. He was continuing his therapy for a paralyzing injury he sustained when he was just 16 and the November of 2020. They were married. While many people get into caregiving through crisis, Karisma chose a path that will always include caregiving, but the positivity she approaches life with and the couple's goal to raise awareness about accessibility, life in a wheelchair and relationships as an inter abled couple has exploded that millions of followers across social media and millions you are getting the message out charisma, we are so excited to have you guys here with us today.

Unknown: 2:58

I'm so excited. Thank you for having me. That bio was amazing. I think you made me sound even cooler than I am. So super cool. We totally believed it. I'm just excited to be here. Thank you for having me. I appreciate it.

JJ: 3:14

So you are I love this. So I've read articles. And again, I laugh and say I'm a stalker, and I don't even remember how you guys came up. And it may have been just because of all the caregiving feeds that I have. And you came up and I started watching and there's so much positivity. It's so it's so filled with hope so tell us because we're not here to talk about cold today. We're not talking about him. He may be although you

Unknown: 3:39

know, you know, Jay, I don't know if you notice. kind of hot. I get it. I'm sorry. Your call. Like I feel like I need to say calls hot.

JJ: 3:52

Bad girl. They are beautiful. They are beautiful. Beautiful. Natalie, you're old enough to be his mother. So stop. Anyway, so So give us a little background because I love this. I love this story.

Unknown: 4:07

Yes. Okay. So background. Do you want me to start with me first or when I met Cole, but

JJ: 4:13

you? Well, you were born

Unknown: 4:17

for this board up. So before I met Cole, like you mentioned, I was going down in occupational therapy path. And I had studied at VCU Virginia Commonwealth University. And I studied exercise science and cool actually went to University of Richmond, which is a rival school. The spiders in the Rams. I'm very familiar with that being a Virginian. Yes. Yeah. So we don't like to talk about his upbringing. Um, yeah, so when Cole was 16, he dove into the James River and that is how he sustained his spinal cord injury. So he is a C five c six quadriplegic and we met Six years after his injury, so he was, you know, pretty into his injury. He was used to the life he was living. He had a routine and everything. So then when we met, we started dating right away. I mean, there was no period of like friendship. It was, we met on like, I know dates. It's really strange. But I just remember dates. And I'm pretty sure we met the week of November 15. And then we went to a gala on November 15. And then our first date was December 1. So it was very, very, very fast. That's was there any? I know that and I just felt like as a private provider, and like, was there any rules about mingling with patients? Exactly. So when we started our channel, that was our biggest, like, concern and comment. They were curious about why I didn't get fired, going. Yeah, that's mostly me. I'm like, how did that go? So I worked inpatient. So I was an NP inpatient rehab tech. And because gyms don't exist for people with disabilities, Cole would go to the hospital and get his workout done. Okay. So they had therapists there that could help assist Cole on different equipments and everything. So that's why he would go to the hospital. Okay. They had pretty much an outpatient gym. Okay, that makes sense. Okay, so it was basically just a gym membership. Exactly. Yes. It doesn't count. We're like,

JJ: 6:22

downplaying it. We're like, definitely. You can tell him we said that he was just the gym hanging out. I was working. Yeah. So I always you know, and I know people have asked these questions. So this is, when you back home when you saw call, what did you see? Because so many people have issues. When they see someone with a disability or a differing ability, they are blinded by that. So tell me what you saw. I

Unknown: 6:47

saw cool. And it's so hard. I think that I have, I don't know if I want to use the word advantage. But I have been exposed to people with disabilities my entire life. Okay, since I was a little girl, I have a couple of family members on my father's side who are blind, and have, you know, cognitive disabilities. And then I have a cousin, my first cousin who was born deaf. And so I have always been exposed to disabilities in general. And I started working at Sheltering Arms. So before Cohen, I had even met, I worked in Sheltering Arms for a year. And so I was already exposed to seeing people in wheelchairs. It just became what normal as normal human, it's normal. They're just like us. They just have different abilities. Yes. And so I feel like when I saw cool, I was already past that point where it's like, oh, he's in a wheelchair. It just didn't matter to me, because I just saw him. And I like you said Cole's high. So that's what I saw. Very got

JJ: 7:52

that out of the way.

Unknown: 7:53

I just feel like we should say that. Because it wasn't like, oh, he was so tired. Now. He's high. And then I got to know him. Yeah. And he was I had walked by, and he looked at me, we made eye contact. And he literally looked at me and was like, hey, like, I was so shocked, because I was like, is he flirting? Dude, he's got swag. Yeah. And that's when I knew right there. Oh,

JJ: 8:20

man. So you had your date? You, you went out and throughout this dating process, you tell me how? Because you guys have done some amazing videos that talk about as a caregiver versus a girlfriend versus a wife. There's a difference, your caregiver, but you still have those other roles. So tell us as you guys, how did your caregiving progress, because you're still the relationship you still the girlfriend, you're still the wife. But tell me about that. How did that start?

Unknown: 8:49

So it's interesting. Cole refused to let me do any of his care for well, he refused to let me do all of his care for a year. So I didn't learn the ins and outs of his caregiving until we were dating for a little over a year. So the only thing I would ever do was help him transfer on and off the couch and help him use the bathroom sometimes, but that was the extent of it. And I had to like, pay cool with that I want to learn I want it I want to be a part of this because I in order for us to have more intimate alone time, I needed to learn a little something because we were unable to just have you know, we couldn't go on a date for four hours, because he had to use the bathroom and at that point, he couldn't do it independently. Okay. And I wanted that I wanted it to feel like we could have a normal dating life without having to go back his mom do as I see or his mom having to be nearby. I didn't want that I wanted it to be just that. And so I learned that part of his care maybe three weeks in, but after that I knew nothing. I didn't know his bowel program didn't know anything else because he did not want that to be a major part of our release. Did Shep you want it to just date at the beginning? And I appreciated that actually, I feel like it allowed us to really focus on us without the caregiving aspect, and really grow our relationship and our intimacy, and then introduce that when we were ready. Hmm, that's interesting. Yeah. So, gosh, I have like, 1000 questions. So, no, yeah. Because you're dating in? Did you see this as When did you think, yeah, this is somebody I want to be with, like, the rest of my life. This person, this is my lobster. This is my lobster. This is like, because seahorses made for life. By the way, male sea horses, you know, get the females to give birth to the babies, they have the babies out there. Which I personally wish I was a seahorse. And you know, it's an interesting question, because I knew on our first date, but just so wild to say, but I have dated before I have had a long term relationship before coal, and then another short term relationship before coal. And when I met coal, I just knew there's something that I mean, when they say, when you know, you know, I feel like it's so true. And after our first day, I just knew I wanted to spend the rest of my life with him. And so I went home, went to Pinterest and typed in, like wheelchair weddings, weddings, with men and wheelchairs and found, like pictures, and I found people who, you know, had been married, and the man was in a wheelchair, and they just gave me like, so much hope because it is such an unknown. I didn't know what it was like to date someone in a wheelchair. But seeing that just made me so happy. So right away, I knew. I like representation, you know, what they talk about how representation and seeing yourselves on TV, seeing yourselves in magazines, seeing yourselves on, you know, online, wherever that makes that normalizes it to and it's so interesting. I like the fact that number one, you went to Pinterest, you can promote either of us, we're fine Pinterest, and, and so everybody goes to Pinterest, I'm getting ready for my Halloween costumes. But you've looked at that, and you had representation. That's important. And matters. Its inclusivity is what it is. Well,

JJ: 12:13

I think that's that's one of the reasons why the social media platforms are so important. And I know that there was a point even before you all were married, where you said there are things that people have questions about that maybe you couldn't find the answers to. And you guys decided, okay, well, we're gonna we're gonna tell some people some stuff because it's not out there. What happened there?

Unknown: 12:39

Like why we made that decision to do that? Yeah. You know, it's interesting, because, before I met, Koi wasn't very a very vulnerable open person. I was very private. But Cole is very open. And ever since his injury, he made the decision to be an open book for people. And so getting into a relationship with him, I feel like, it kind of brought me into that world, I became more open. And so when people started asking questions, I was like, you know, what, what is the harm in sharing those aspects of our life, because what it's going to do is normalize our relationship is going to help people realize that people with disabilities are worthy partners. And so I just knew it was an important message and put those feelings aside and decided that it was important for us to share that with with people. Of course, we still have our boundaries, we won't share everything. There's some things people do not need to know. Right? Yeah, they

JJ: 13:33

ask, it's okay. They will ask.

Unknown: 13:36

They do. But yeah, we just found the importance because like you said, I didn't have the answer to these questions. I didn't find people talking about these very taboo or sensitive topics. And so I felt like it was kind of my place in the sense, you know, to share that aspect of my life in hopes that other people would share too because that now I feel like I'm seeing it more people are sharing that that side of the relationship and those ins and outs and it makes me excited because I'm learning more to now that I see other people sharing. I like that if not me then who is not, you know, if not now then when? And so, the fact that you had the courage you ankle, because he sounds like he is quite the personality. Yes. I've already gotta tell you're all like

JJ: 14:21

he is. I'm not very true, but I'm like you. You gotta get more video, Tom, because he is.

Unknown: 14:30

You know, we talk about, you know, caregiving, JJ said it and kind of your bio caregiving starts typically in a crisis for me. It started in a crisis when Jason was diagnosed with cancer. For our mom, it was it did start in a crisis. It was a it was a slow burn until the giant explosion happened in 2019. And then we just got full on into it. And you went into it. Knowingly would you say that? You have Have the caregiver gene that is not actually scientific. I haven't made that up. But I think that we all have some of us have a caregiver gene. And it could be a long distance caregiver gene, it could be the one on one. D, what do you think what was there? I think that naturally I'm a big nurturer. And I feel like I have that in me. And that's like, doesn't matter who it is, if it's someone special in my life, I have that nurturing tendencies, I guess you would say, I remember actually, when I was 11, I worked at my church, they had like a different age group daycare, I guess you could call them while parents were in service. You know, they had places for their children. And I worked with a one year olds. And I remember, there was this one baby who had Down syndrome and needed one on one, like attention. Usually, the ratio is one to four, but this baby needed one on one. And I volunteered. I was like, every time this baby's here, I want to be his one on one. His name was Matthew, he was the most adorable child but it just made me I felt like I needed to be his one on one and I enjoyed it. And I loved it. And I just feel like, I don't know, I just, I feel like naturally I just am a nurturer. i My biggest dream in life is to be a mom. That's what I want. Like, what do you want to do for your career? I'm like, I mean, everything else is like, Oh, do it. But I really just want to be a mom. And that's always been my dream. I'm gonna tell you charisma if Emily was here. Emily's goal in life was to be a mother. And she is she was responsible for burying the children. Honestly, she gave JJ and I break. And so she has her son who's 22 and the twins who are 20. And the greatest joy in her life, her biggest accomplishment that she would say is being a mother. And so she would so relate to that. Yeah. I love that I love so I feel like sometimes when you when you say that people were like, okay, but like what else you wanted to? Do you want a job? Like how much money do you want to make? Yeah, and you're like, and for her? It's for Emily, and we're speaking for her. But she's She doesn't care about actually how much money she makes. She cares about the relationship with her children. And so raising good human beings and raising good humans. Yes. That's been very important to me, too. Yeah.

JJ: 17:20

Wow. Okay, so So you date and then you get married. And it's this? Of course, it's at the end of COVID. So there's some I

Unknown: 17:30

have a wedding dear to pandemic male. Yeah, you know, honestly, looking back on that I wouldn't have I wouldn't have changed it. And I wouldn't have had it any other way. Because we had the most intimate small wedding was just with the people that mean the most to us, the people that wrote to us that support us every single day. And it was the most fun wedding. And we were able to do more, put our budget elsewhere with decorations and this and that, because we had less people so we're feeding less people on it. It was just amazing. I wouldn't have had it any other way. But waiting during pandemic was was quite an adventure. Well, you know, I'll say this I had for my because I believe, no offense charisma, but I'm all about having a second wedding. And so does someone else. But love my first husband really sweet didn't work out. But the second wedding for my next wedding. I was I loved having a small intimate wedding, and paying for food for people actually like as opposed to having sponsors. I'm like, because I saw in the article, you guys had planned on like a 200 person wedding like everybody and their brother and their cousin and their cousin's cousin and friend. And when you get that big, it starts to become more than what it is. Yeah, it. You know, I will say planning a wedding was very challenging. And I got a lot of comments. Not a lot, but I got comments sometimes saying that. The wedding is about the wedding guests. And I was like, That is not that is not? No. And that's why I was so excited that we just slimmed it down. Because I was truly going to be meeting people for the first time I heard wedding. And I did not want that. Yeah, like, why am I reading? So I'm the bride and I'm meeting people I've never met before at our wedding. And that was just so strange to me. Yeah. So I second that a small intimate wedding is just, it just feels so magical. You can talk to everyone. I feel like we have a big wedding. You don't have time to mingle. You know, you don't have time to either enjoy it either. Because you're spending all your time mingling. That's true.

JJ: 19:39

So what I love charisma is that even during all of this and the wedding again, y'all go out and look at her pages go out and look at you do this, this it was beautiful. But you put there's the care requirements for coal. There's the care requirements for you personally, I mean, you have to have care as well. You've got to take care of your mental health. But you got As you put no limitations on yourselves. I mean, there's there's nothing there that limits you. So, tell me. So where were you living? So because you got you got married? So at what point did you guys say? Because I know you've gone through a remodel and a couple different things. What what is the housing situation? Like? When did you finally get to that point where you're like, hey, we're alone?

Unknown: 20:24

Yeah, honestly, that's been an interesting journey. So we bought our first house and 2020 actually, also, during the pandemic, the best time to buy a house because they absolutely, were so low. That's right. So we bought our house in 2020, March of 2020. But it took several months to renovate it. And before we could even move in, and we were living with close parents at his house. And so I was living with my teacher in laws, we were living in his just one bedroom. And we had the added, added access to the addict. But it wasn't a huge space. And that was challenging. That was very challenging, because for a long time, his mom was his caregiver. And so I would live there, and she would come and do his care while I was sleeping. And it was just a dynamic that was very challenging for me. I was a big reason that I became his full time caregiver because I couldn't handle having someone coming into our relationship coming into our room doing his care, it just it just, it felt awkward to me. More than awkward.

JJ: 21:31

Or someone in our bedroom. Why

Unknown: 21:33

is your mommy and it feels like you're 16 at that moment. Why is your mom in here? And are you feel like, Oh, hi, I'm not, I'm not a you know, whatever. You know, you're like you're caught by his mom, like, you know, you're back in high school again, you're not supposed to be in the bedroom, the door closed. You know, that's a good point. I never thought about it that way. But it did make me feel like I was back in high school and made me feel like I was I was young again. And I didn't have a mature adult relationship. And I think that's why I've struggled so much. And so I adore his parents, but we were ready to get out. And so we actually moved into our house while it was still being renovated. We were still getting an addition. And we just decided to sleep on the couch for a week. And then finally one of the bedrooms were done. So we transition to a twin bed. And then the other bedroom was done. And we transition to a clean bed. And finally our bedroom was done and we moved into our bedroom. But we were so eager to just be on our own. Cole is not a small person. I mean, you're kind of smallish. I mean, you're she's smaller than we are Jay. I can tell off the bat like you're gonna be on YouTube. She is petition. But Cole is not ish. And so the fact that you slept in a twin, I don't even like sleeping in a queen with my husband. I'm like, I feel like your breath is near me. That on the other side? Yes. Hey, ladies,

Natalie: 22:56

I need to interrupt for just a second to share about the sisterhood membership. It's basically a sale every day. And the best part, it's free. Here's the details. We're partnering with our friends at benefit hub and other care partners to save you money. With over 200,000 participating companies across the US and abroad. You'll find discounts at your favorite local stores, huge savings on vacations, amazing deals on home auto and supplemental insurances and everything in between. Go to Confessions of a reluctant caregiver.com to sign up. And then definitely tell your friends about it. They can join to trust me, there's a discount for everyone. And don't forget, it's free. Okay, back to confessing.

Unknown: 23:46

So, we have to ask about this. I got to keep going down the path with your mother. Yes, yes. So I can imagine colts mother is a mama bear. Like, yeah, her son has been injured. And she was probably more than a helicopter, like over the top of him because she was his primary support. I don't want to assume but I do assume. Yeah. Okay. I think that's a great assumption. Yeah. And so the mama bear swoops in and has been caring for him. And he lays eyes on this man. No, no, who passes him in the gym. And she's all like, I'm sorry, what are you about? So how was that because you're doing that handoff. We've never talked about a handoff from caregiver to caregiver, mother in law to daughter in law. Can you do it well enough? It's hard. It is hard. And I struggled. I don't know her perspective, because we've never really had a deep conversation together about that. I just know my side of the story. Right? But it was very hard for me like you said it felt like I was in high school again. It felt like I just had someone over our relationship and if cool When I had an argument She includes, he is the most empathetic person. And if we're fighting, he cannot hide it. Like he just is so sad. And I knew there was a there was a moment or months into our relationship where I struggled with a dynamic with his mom. And I had such a hard time because of my previous relationships. parents weren't then involved in our relationship. Of course not. So I struggled so hard and cold thought that I was going to walk away. And so he was so emotional one day, and his mom like picked up on it and was like, what's wrong, what's wrong and like, was begging to know what was wrong with him. And it was, that was really challenging for me, because I need to have a relationship with my partner without feeling like other people are involved in it no matter who it is. So it was hard. And then I think I made it a little bit more challenging, because I just took over the caregiving without even talking to her, I was just like, doing it. And like, we just like one day, there was more to the story. So cool, kept accident, and he got a blister. And I did not want her to know. And so I called I both were like, let's just keep it a secret. Let's just do the caregiving between the two of us and like slowly wean her off. Because I just didn't want to a lesson on how I could have done something better. I just, I couldn't do it. I was 2425 years old, I didn't want a lesson on how to care for my, my, you was almost my husband at the time he is my fiancee. So that's when we started doing it. And I think that was hard for her. Because she felt like she was losing her identity. She felt like she was losing her son. And I think there's a better way to manage that. And I don't think I did the best I could. I mean, at the time, it was the best thing I could, I could do. But if I could do it over again, I would do it a little better. You know, I think that's so true about the identity part, because it's hard. I lost my identity as a wife when Jason got sick, and I became a caregiver. And then I've fought to get it back. And then and then it's I think it's so many caregivers, like I'm living as a caregiver and a wife at the same time. And sometimes I'm doing you are and I don't cook, so I can't even include that. But But I do a lot of other things, right, because I suck at cooking. And so acknowledge your skills and and your deficits. And so, but I think when people when the dynamic changes when the relationship changes, I wonder about and I hear you saying I should have been more intentional, we should have sat down and said, Hey, we're going to start transitioning this. This is the natural time do we did you all have any counseling at all? Like is anytime during your relationship? If you don't mind me asking me calling me? Yeah, we did. We had premarital counseling before our wedding for three months, which I loved. And a big topic was that relationship in that transition between his mom and me doing his care. And that was a lot of what we focused on, because I did struggle a lot with with that relationship at the beginning.

JJ: 28:03

You know, it's interesting that you say that, because regardless of who you're caring for, when you said I didn't need a lesson, it's funny because I hear I feel like as a caregiver, when you do something, somebody's always judging, it doesn't matter if it's a mother in law, or what somebody's like, well, you could do it this way. And it would be better. And you're like, I don't want to talk to

Unknown: 28:20

you, are you? Well see, JJ is nice, I would say or you can suck it. That's not a dirty word. You can you can go somewhere else. I don't really care what you look at me smiling through it.

JJ: 28:34

I mean, you move out, you guys are full time and under that. So you have you have opted. You don't have additional caregivers coming in. But there's a reason why in your house. You don't you don't want that you have chosen to be the caregiver. You guys are each other's caregivers is what I say because you care for one another. But tell me tell me about that. Why that's important to you all. The question?

Unknown: 28:56

I think, like I mentioned earlier, when his his parents were mostly his mom's caregiver, I always felt like someone was kind of in like coming in between a relationship and that that's very challenging for me. And so after experiencing that, I just knew that I just I didn't want that at all. Because I felt like I don't know being such a young couple you want all the time that you can get with each other. And because we have our own business and we control our own schedule, we want to sleep on when we want we don't want to like someone comes over every day at eight o'clock. And I don't I don't want to get up at eight o'clock if I don't have to or seven o'clock if I don't have to. I want to be able to choose my schedule. And because we have that freedom and we're privileged to be able to do that. Yeah, I just wanted to keep our routine the same. And also, because I you know, went to OT school. I learned a lot about quality of life and learned a lot about how to be more independent. And so when it came to our relationship, I was always encouraging Cole let's try this. Let's try to be a Little bit more independent in this area so that we don't have to hire a caregiver. Because there were a lot of things that cold didn't do, I think because he was injured so young, there wasn't a lot of pressure to learn these things independently. And so I feel like people who get injured a little later in life, they were already living such an independent life that they want to get right back to that immediately, right? Because in high school, and so I think the mentality was a little bit different. So I, we've always worked on his independence. And so right now, he does pretty much everything on his own. So hiring a caregiver just doesn't make sense, because they would come over for two hours every other day. And it just wouldn't be worth their time or our time. So I think we just worked on the independence. And that's how we got to this this point. Okay, I'm dying to ask, Does he ever tell you stop treating me like a client? No, actually, you know, me, like, stop treat me like one of the kids. Like, kids, I treat kids. I've worked with children and at risk children. He's like, don't talk to me, like the staff. So because I know you push him like, I push my husband, like, I push my husband to do things to promote independence. Yes. So he hasn't ever said to you, charisma. Knock it off. Yeah, that's a good point. Yeah, it's a great question. No, he's never said that to me. And maybe because whenever I present this, I'm always saying, Hey, this is becoming difficult for me, I am becoming overwhelmed. I think it would help take some of that pressure off me if you worked on this part of your life and become more independent, and then I'm able to be better in this area as a wife. And so I think that's kind of how I made it work. Wow, that that is the money. That is the money and charisma, I'm going to tell you out of almost 100 episodes, not one time have we had somebody say that succinctly. That is a different way, because I'm going to try it on Jason and I'll text you and let you know if it works.

JJ: 32:05

Because that that communication so that for me, I'm like it. She said, Hey, I'm getting a little overwhelmed. You raised your hand with the person you were caring for. And so many times, people try to protect everybody and they don't want to wow, madly, like I feel like that's the like we're done.

Unknown: 32:27

Know, I think it's so important. And I always have this phrase. And I always say it's being a selfish caregiver, you have to think about yourself, you have to put your needs first. Because if you don't, then you can't be the best caregiver that you can be for someone else. If you're not filling your cup, if you're not taking care of yourself, how are you going to be able to be the best version of yourself for someone else. And so I knew that I was hitting a rock when we moved into our first house, I was like, this is going to be a lot. I you know, it's hard for coal to cook, I'm going to be doing the cooking, it's hard for him to clean, I'm going to be doing the cleaning. So what can he do to help ease my load? And to lessen that? And so yeah, that's when he learned to use a bathroom on his own. And he's done it ever since? Yes, going back, you know, you're like, Oh, you you can do this, that I

JJ: 33:15

read that I love about and I think it goes along with what we're talking about here. Is that with you, you you guys have your defined responsibilities, but you put off responsibility that may be cold never thought about before. And I think maybe his mom took care of it. You guys were talking about when we go out to eat Cole, you need to make sure that you have he has a special fork. So you need to have your stuff. I'm not carrying your stuff. So tell us about that. Like how do you make what what is he responsible for? I mean, I know he doesn't get your purse, so you gotta get your purse? Yeah,

Unknown: 33:47

yeah, he's responsible for things that everyone else is responsible for. You know, if he needs a fork, he needs a special fork for dinner. He's going to be a special fork if he needs his you know, I see bags to use the restaurant he's going to make sure he has them Yes, I may have to get them from the cabinet for him. But it's his responsibility to remember to get that and just like me, I'm gonna grab my purse I'm gonna grab my ID he's not thinking about my stuff and I shouldn't be thinking about his stuff so it was a big boundary that we had to establish that you are an independent person in yes I'm here to help you when you need things but remembering to take care of yourself and your body is still important for you to do for yourself I can't constantly think about that especially when we have kids we made sure to set these boundaries before having children because my attention is going to go somewhere else and I need to know that Cole is going to be okay if that happens you know

JJ: 34:46

that's an any marriage now like which you know I'm kind of finding Christmas so was and she's like naturally young. But at but what you what you're saying there because sometimes my husband does this to me like we'll get downstairs we're taking his car mind you his truck, he's like to get the keys. But why would I get the keys? It's not even my car.

Unknown: 35:06

Jason does it to me. Yeah. And, and the thing is charisma. I mean, you've got, especially when Cole had his accident, he was 16. He's a boy. I mean, we all know what that means. And his mother has been taking care of him. And she's, you know, and we know, boy brains, and, and the average brain does not mature until 29. So, and with men, it takes longer, but whatever. And so I think, I think that it was very wise, of you and him and him to choose the path that you've chosen. Like, let's go ahead and start talking about and have the difficult conversations while we're okay. And we don't do it in the heat of the moment. Yeah. And I don't resent you. Because I'm assuming, I mean, I'm not trying to bring up you know, dirt. But I'm assuming not every day is rainbows and unicorns? Are there times that you want to kill call? I think our relationship is just like any relationship. Because if you if you said that I'd be like your liar charisma, because I could tell you I know you want to kill him sometimes. That's a normal marriage thing. That's not. Yeah, he's a man. He's, he's a man. All I can say. And men have tendencies that no matter if you're disabled or not, they just are their girls. Preach, girl. I've got my list about like Santa Claus with that list of things that piss me. Bleep. I'm sure Jason's list is honestly all the way to China at this point for me, but because I'm so perfect.

JJ: 36:44

I love what you said that it's it's, it's a normal relationship. You don't allow you. This is a hard word. But you don't feel sorry for Cole that you don't he's not given any, you're gonna give him slack.

Unknown: 36:56

Do you know I think that he is just as like, responsible. Like, I just I just don't see him differently. And I think that a lot of them do. And it's interesting, because when I see comments on our channel, people are like, I think there was a video I posted. We posted recently how I said, I just don't, I rely on coal to make certain decisions for himself. putting on lotion, that's what it was called, isn't put on lotion. And so his knees are so dry, and they crack and they like they get bloody sometimes. And I'm like, You need to put on lotion, cool. Like, I'm not gonna sit here and put lotion on for you because you, you are capable. And I'm not going to be your mom looking over you making sure you put lotion on your legs. You're an adult. And someone commented and said, well, charisma, like you are his wife and his caregiver like you should be doing that. And I said no. Like, I think that people have this perception that I need to be doing everything at all times for my husband, but I don't think that's true. Like he's fully independent and capable. And he's an adult. And I'm going to treat him like my equal not in not less than in planning means Yeah. Well, you didn't sign up to be his mom. Let's just be really clear. Yeah, I tell my husband that I'm like, There's caregiving. And then I said, like your mother. Yeah, there's nothing that makes me matter. When I feel like his mother, because then I feel like I'm scolding him, or I'm telling him what to do. And there's times when I'm like, I should not have to tell you, you're a grown man, please do not put me in this place. Because it it really makes me upset. It doesn't feel fair. Yeah, I agree. And I wonder if that's something that just wives in general do with with husbands? You know, I wonder if it's just like kind of a universal topic. But I agree. I think that I don't want to feel like his mother or like, he's my husband I chose chose to marry him. Yeah, I've liked him.

JJ: 38:53

I want to keep liking him pretty well. Yeah. So tell me about burnout though, because you mentioned that in one of the videos that you guys do. So tell me about how you handle that because that's important for all caregivers, because you reach a point and you got to get targeted. It's like what you said about moving or because you do a lot of if you watch your old videos, you do transfers you do everything. So tell me about burnout. What do you do? Yeah,

Unknown: 39:17

so when we first moved here from Virginia to California, it was the worst burnout I've ever experienced. We moved here, just the two of us. We had no health. So I was unpacking everything we were I was up for like five days in a row almost 14 hours every day, unpacking everything because we couldn't live until I got rid of all the boxes, put everything away. And I had like the worst burnout after that transition, and I just cried and cried and cried. And I realized I needed a break. And so thankfully, we were in a position where we just stayed in bed. We stayed in bed for like three days. And then we did everything in bed and I was like I need to rest. And in order for me to rest, I need you to be in this to be in bed all day with me. Because if as soon as I have to get you up, it's like, it's going to be a lot for me. And he allowed that to happen. Which was great, because again, we didn't have a caregiver at the time. So that was the only choice that we had. But I was, I become aware of those symptoms I've become aware of when I need to take a break. Yeah. So having that moment helped me realize what it feels like to get to that point again. And so I just take a moment to tell people, hey, I need a break. And cause amazing at recognizing that I'm getting overwhelmed and looking at me and saying, prisma, take the day off, take a break, I see that you're getting overwhelmed. I can handle all this. I want you to rest. And so I'm very thankful to have him for that. Because sometimes you forget, you don't notice that you're getting overwhelmed. You don't notice that things are becoming too much. And having someone who can see those symptoms in you as well and advocate for you. Is important to have. Yeah. Does he ever say you're like No, no? Yeah. For sure. For sure. Like he'll say, you seem overwhelmed. And I'm like, I'm fine. It's not. Yeah. As you slam the counter. Dogs are running away. I know. You've got dogs, I can tell because I still have a little bit in the backyard. Keep coming. Yeah, I have a dog too. I mean, clearly, as evidenced by I mean, I clearly those are my children have portraits of dogs. Yeah, I mean, even the dogs are scared that even the dogs can look at me and be like, I need to settle down. Yeah, not happy. Take a break. So did you. So this is this is completely stupid question. So when you laid in bed, did you watch Netflix? Oh, yes. Oh, wait. That like, I just I just I just felt like that was important to ask that there would that would be the burning question for everyone is like, what did you do? Because, because and then it was like, What's your favorite series? Oh, years

JJ: 42:05

of TV.

Unknown: 42:07

Never ending. She's younger than us. We watched it when we had to watch commercials and wait till the next week. Unfortunately, like second class. We know what it's like. But you know, you could at least at least you know, we'd have to run and you'd have to play in your pee breaks between the commercials. And hopefully it was a 62nd. So yeah.

JJ: 42:30

First of all, I know there's a lot of talk around this. And it's a topic that you guys are very open about. And it's about intimacy and being a caregiver and no details. But we have a lot. You don't have to be. But we have had a guest on Robert party who was fantastic and his wife had cancer. But he still talked about that. A differing ability, a disability and illness doesn't have to take away your intimacy as when you're in that caregiver moment. Can you tell me how that works for you all how you continue to have that even when you're a caregiver.

Unknown: 43:03

So I find intimacy in caregiving, there are so many moments where I am, well cold, transfer him to him. He transfers on his own now. But before when I would help him during a transfer, I would find moments of being intimate there where he would just grab me and we just fall down and hug each other. There are just lots of moments to find that while doing care. And I feel like because I'm his caregiver, we're closer and we are more intimate. I just feel like that closeness is more prevalent, I guess, is the word. Because of the kind of relationship that we've had. You know, like I mentioned earlier, I had a longtime long term relationship before Cole and our intimacy and our vulnerability was never to the level it is with me and Cole and I appreciate that so much. Yeah. And so yeah, we find levels of times to be intimate all the time, especially when doing care. I think we're like any young couple who just got married couple years ago, like obsessed with each other. We still like want to be all over each other with each other all the time. I think it's the same. I love that. But you do have to be more intentional, though. I will say that. Yeah. And I've talked to some women who struggle because it takes more time to get into a position where you can be intimate. In that moment, they lose the the joy, they lose that desire. It's hard to feel desirable. When you're a caregiver. It's hard to and I'm gonna say this out loud. I don't always feel like being intimate. When I have been a caregiver all day. And and so when you're if you're if you're as a couple, I think this is so important. And Robert would talk about this too. It's So, how do we get realigned? Because I think it's very easy to get misaligned. And then things get misinterpreted. And I think that's where you have a lot of relationships, you start to drift apart, and the role becomes sole caregiver, and then care recipient, as opposed to husband and wife, and you care you happen to care for your spouse. I think that's so important, because it can really push you apart to the point that you question. Is this the right? fit for me anymore? Why am I doing this? And it becomes an obligation as opposed to a desire to want? I think that's important for people to realize. Yeah, I think that I think that's a good point. I think that I, you know, I've had my moments where I've struggled with that as well. Because and I have always found it important to communicate with each other. So if I, you know, was feeling that way, I would express that to him. And he would ask me, like, okay, how can I help with that feeling? How can I make it easier for you? Because sometimes I struggle because I want cool to, like, touch me more like, be like, because it's harder for him to be physically intimate. You know, it's harder for him to do that. But I'm just like, find ways to do that. Because that does still make me feel good. It still makes me feel desirable when you come up and just like, touch me and tell me I look. Hi, or are ya? I'm sorry, Christmas. I'm sorry. You're hot, too. I don't want to tell you their husband. Does they want you to feel like it was a sexual harassment. Podcast. We don't have an HR department. So good. Congratulations, you're hot. And so I will say this though. This is so funny. If my husband walks by me and does not at some level touch me and it shouldn't be a questionable touch. I'm a little offended. Something happened? Did I eat too much carbs last night? Am I feeling like, like I expected some level a sexual harassment complaint if it you know, like, if you're not slapping me on the butt, I'm gonna be offended. I still want that. I do want that just not in public. And so it's fine. So that is okay, so I'm sorry, Jay. I don't know if you know this. But I there's so much more than I wanted to ask charisma. But we've really gone down this path. And I know we should probably stop. Now it's time for Sister questions.

JJ: 47:24

I haven't I have an easy one. Because I want to make sure everybody knows about you guys. And we'll have all your links and everything out. But tell me where we can find you guys. And and tell me about the videos because I've watched you guys on the beach. I've watched you go through the mountains like you guys are doing everything and your your message is so positive. So tell me where I can find you and tell me why positivity is so important. Good questions.

Unknown: 47:56

Yes, great questions. So you can find us on youtube roll with colon charisma. My Instagram is happily charisma calls, Instagram is rolled out with dark coal. And then on Tik Tok. It's calling charisma. And we just have a strong message of positivity because we realize that there are so many hard moments in life. And choosing to recognize the positives is challenging. And it's hard. But that's what we do every day. But that's not to say that we don't have moments where we do sit in, you know, our sadness, because it's important to feel those emotions too. Because if you just brushed it under the rug, it's you're never healing you're never you know, recognizing those feelings, too. But we just love to show the positivity because the world just feels so dark sometimes. And we want to be the light in so we try to keep our content positive and fun. And to show that you can have a great wonderful life with a disability and your life doesn't have to be over.

JJ: 48:57

You're definitely Unlight No, you guys are wonderful.

Unknown: 49:01

I love her. Like she's telling our sister. Yeah, she told me they live in California. She's really from Virginia.

JJ: 49:07

Alright, Natalie,

Unknown: 49:08

get it ready for the best one? Yeah, so I have the best question. What is your favorite guilty pleasure? Ice cream? What kind of ice cream? Like you eat it? Oh, all the time. I eat ice cream tumble all the time. Yeah, that's tricky. I love it all. But if I had to choose it's like Chad's flavor. It is Coldstone birthday cake. Remix their signature it's so bad. It's so much sugar. I love it. I have the biggest sweet tooth.

JJ: 49:43

I like it. The fact that the birthday cake with all the calories I love that stuff.

Unknown: 49:48

silver lining to Karen care caregiving burning the calories Yeah. Colas working you out girl. Oh,

JJ: 49:55

charisma. Thank you so much for being with us guys. You have been such a joy

Unknown: 50:00

Thank you for having me. I'm happy to be a part of the sisterhood now. Maybe we have to do like a part two because this was just so great. Oh, I think a part two sounds good. We

JJ: 50:11

should go to California and see Sophie. Yeah.

Unknown: 50:15

I know we should. California. It's a great laughs Now we're totally doing it live. All right, guys. Thanks so much charisma, thanks so much for for joining us today and send our love to call in because, you know, I think he is such a part of who you are, but you're such a part of who he is. And together, you are absolutely unstoppable. And so thanks, everybody until we confess again, we'll see you next time.

Natalie: 50:44

Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below.

Unknown: 51:11

We'll see you next Tuesday when we come together to confess again, till then take care of you. Okay,

Natalie: 51:21

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 sister's night 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.