40+ Tips to Avoid Caregiver Burnout

In this episode of the Raising Disabled Podcast, we are talking about 40+ ways to avoid caregiver burnout.  

We talk about:

• what caregiver burnout is,
• what it can feel like physically and emotionally,
• how and why it happens to every single caregiver at some point,
• and then we share 40+ tips to avoid burnout or make it more manageable. 

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Transcript

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Rhandyl: [00:00:00] Hey, y'all. Welcome back. So today we're going to talk about caregiver burnout and possible tips and tricks on how to avoid that or help with that. I mean, I'll be the first to say that caregiver burnout doesn't just go away. ... I mean, I've been living this life for almost 10 years, and I figured out a lot, but there's no magic button or formula that's gonna completely help you avoid caregiver burnout. It's just- Mm-hmm ... something that people that are living this life with kids with any sort of disabilities understand, and it just happens, and it all depends on everybody's individual caregiving situation.

But- mm-hmm ... from the beginning of my journey with Remi until now I figured out a lot of things that do help because I was just living in, like- how- Survival in the beginning you're just survival mode. Yeah. So like, , but for people that obviously don't live this life that are listening that wanna understand more, so we're just gonna kinda [00:01:00] explain what caregiver burnout is in a way- Yeah ... and what that means. So, 

Deonna: Deonna. Yeah, like if you've never heard that before, it's kinda like regular mom burnout. I mean, you just get- Yeah ... tired, but I feel like caregiver burnout is, it's not just feeling- No ... tired. It's this ongoing physical, emotional, mental exhaustion that's caused by the long-term caregiving demands. And I explain this like, you know when you have a newborn baby and you're like, "Oh-" Mm-hmm ... people are like, "Oh, that's the tiredest you'll ever be"? Well, we never get to move out of that phase, ever. No. Like A- and in the meantime, we're raising all these other kids, and Right ... I got thrown back into that later. Mm-hmm. It was different than an, ba, a kid being born with a disability,

but, Yeah ... some of the things that you can feel is, , [00:02:00] and these are things that probably happened to me and you at some point. Oh, yeah. Every single one of these things, but, some of them ... for people who aren't experiencing this in their body like us it can make you feel really emotionally numb. I go through that. I'm like, "I don't care about anything." Yes. Crying more often. Co- like constant fatigue, irritability. I'm like, "Oh yeah, that's me." Mm-hmm. Uh, losing your patience with- ... everybody. Uh, not just the people in your house. Feeling very isolated. Yeah. Forgetting to do things. Weakness like kind of in the fatigue thing too. Yeah. Trouble sleeping, anxiety, panic attacks, depression, and then just feeling like you've lost yourself as a person.

So- Yeah ... uh, I've actually, I've felt all of these at some point. The emotionally numb one happens to me a lot. Mm-hmm. I get to the point where I'm just like, "I don't [00:03:00] care about anything except surviving," and it's kinda sad, but I get real panicky. I- Yeah ... that's how my body feels. I don't really get like sad necessarily. Yeah. I get more, I go more down the panic attack path- Mm-hmm ... the- Yeah ... anxiety. Yes. I start freaking out, and I have MS, so whenever I'm having burnout, it gets very bad. I can- 

Rhandyl: Flares up, yeah. 

Deonna: Yeah. But how do you feel- Yeah, I- ... when you're getting burned out? 

Rhandyl: I, so stress triggers migraines for me, so like I'll notice- like I won't realize that I'm super stressed out, but if there's a lot going on and my brain is in a million different places- ... and Remi's sick on top of that, or, just the list goes on I'll start getting migraines. But the biggest thing- Mm-hmm ... for me is anxiety, and it's weird. My anxiety is usually in the middle of the night, like if I wake up. Oh. And I will just wake up from a dead sleep and my [00:04:00] heart is palpitating and even though I take things to help with that, medications- Yeah ... and stuff, it's just like it still happens. And so, and I'm like, "Why?" And then I start thinking of all these things, and I'm like, "Oh yeah, well," mm-hmm. 

Yeah, so for me, I mean, I think in the beginning, like the whole isolated thing was huge, and it- Mm-hmm .... it was like a domino effect of a lot of these- Yeah ... emotions and things. But irritability, for sure. I was actually it's for example, the other night I was dealing with all of this school stuff for Remi. Yeah. And I've got- Me too ... uh, my husband asking me... I get home from work all day, and then I'm sitting there trying to fill out all this paperwork, on my computer, and I've got my son like Mommy, I'm hungry."

And then my husband's on call and he hollers at me from a different room. And then the nurse is asking me a million questions, and I I- ... almost, I mean, I didn't completely lose it, but like- yeah ... I was like, oh my gosh. [00:05:00] Sometimes you just feel like you're the only one keeping the ship together- Mm-hmm even though it's not the case. But, like, all that pressure sometimes is just, yeah. So, uh- 

Deonna: I get real overstimulated ... can be a little irritable. I get real overstimulated like that too, and it's- Mm-hmm. The other night, I was sitting at my computer. I was trying to type in all the school stuff for Allie, which I'm sure we'll talk about here in a minute. But- Yeah ... it really, like, all of a sudden, I started feeling shaky. Mm-hmm. And everyone was talking to me, and I just told my husband, I said, "Hey, I'm about to lose it. Like, all this stuff falls on me, as the mom. And I'm not- Mm-hmm ... complaining, but I'm just telling you these are things that I only can do. I only am the... I'm the one that knows how to do all of this stuff. So y'all need to all leave me alone. I'm about to lose it." Yeah. And he was like, "Oh gosh." But I can get... I never got really overstimulated by even [00:06:00] noises and stuff. But even now after doing this- If there's even two or three devices playing at the same time- Oh I can really- Yeah ... almost flip out.

And I think it's just from having to be on and be, like- alert ... ready to go. We... I never feel like I can just truly relax ever- No ... in the last six years. And sometimes people will, "Oh, you should relax." I'm like, "But I have to be ready." Even if we're sleeping outside of Remi's room or Allie's room- Yeah I have to be ready to go- Yeah ... for an actual CPR emergency at any moment. Exactly. So, it's like you never... Every time even my daughter's nurse calls me, my brain goes into- Yes, immediately ... freak-out mode. Even though- Yep ... she's asking me something that's, like- 

Rhandyl: Well, sure ... not an emergency ... but you immediately, when you see the call, you're like, "Emergency." Yes, that's how I am, too. 

Deonna: Yeah. Or if she says- Yeah ... "Hey, can you call me?" I'm like, "Oh, crap." Oh, no. But [00:07:00] yeah. Yeah. I mean, I d- you know, I did know me and you had more the kind of panicky feeling. But I think- Oh, yeah ... some people just get really tired or they- Depressed, yeah ... I don't know. I mean, peop- I know some people that just cry all the time, which I kinda wish I could cry, 'cause I feel like it'd make me feel better. But some people get really sick to their stomachs. Like- Mm-hmm ... there's so many different things that happen. But- 

Rhandyl: Yeah, it's just like- ... that's what it is ... everybody has different responses. Just- But it's a lot. And 

Deonna: like- A massive overwhelm. Yeah. 

Rhandyl: Yeah. So- On top of that people may wonder, like, why does this happen?

Mm-hmm. And it may be obvious to some people, but we'll just kind of list... I mean, the, this list could go on for multiple episodes. Yeah. But , these are some things that we personally experience, and a lot of caregivers experience while raising their disabled kids.

, Multiple therapies a week nonstop every single week. Mm-hmm. It's not for example, my son has [00:08:00] swim lessons for four or five weeks, and then it's over. Our girls have had therapies multiple times- Forever ... a week, forever. Mm-hmm. And, if they're in school, that's after school., And during school. It's just a lot. You're constantly coordinating with the therapists. Mm-hmm ... and then if you have nurses, then you're coordinating with all of that. I mean, it's just like you're constantly, your brain is a schedule, and if, so that's just a lot.

And then specialists- Mm-hmm ... and appointments on top of that, which, most disabled kids have a lot of doctors and a lot of specialists. And so- yeah ... keeping up with those appointments having to remember to, schedule them out in advance especially if they're not local, which a lot of people have to travel for specialists, so it's just a lot.

Deonna: Mm-hmm. That's super hard. And 

Rhandyl: yeah, trying to coordinate everything, and then insurance battles. Oh, that's one of my- ... big ones. I swear it's nonstop, something. I mean, it can be something as big as, like- getting them to cover nursing [00:09:00] services- Mm-hmm ... to as small as one of my last battles in insurance appeals was for cotton tip applicators, literally cotton tips.

Deonna: Q-tips. Q-tips. 

Rhandyl: Yeah. Q-tips. 

Deonna: Yeah. 

Rhandyl: That's literally, 

Deonna: um- But they have to have special kind of Q-tips that- they do ... are sterile. Like- 

Rhandyl: And they have to have- ... it's so dumb ... and the doctor has to sign orders, and the- Mm-hmm ... it's just constant little battles like that, and big battles with insurance, as you- Mm-hmm because our girls can't survive without their medical supplies, insurance- No ... like, all of that. So, it's super frustrating.

And then, ugh, kinda to where we were kinda going into the whole school thing. Here comes school- Yes ... coming up, and then, most kids with disabilities that go to public schools, they have to do IEPs, ARD meetings, 504s, all these meetings that they have to schedule and coordinate, and make sure that the school understands where they're at and that they're safe and being taken care of.

And then, of course, kind of like the, the insurance stuff, but our kids have medical equipment. [00:10:00] Adjustments for just their equipment in general, their wheelchairs, their standers, but just supplies, like I said, with Q-tips. But,- every single month we get called on- And go through an entire list of- Mm-hmm ... these monthly supplies that our girls need. 

Deonna: Hundreds of things. Yeah. 

Rhandyl: Hundreds and hundreds of things, and we have to, say whether or not we need those this month or not. And so it's like you're constantly in your head or writing down inventory on supplies that you need. 

Deonna: And it's never perfect. Like- Yeah ... there's always something missing, and then you're having to call- Back ordered and beg for that for weeks. Always. 

Rhandyl: Yes. Yeah. And then of course, financial stress. There's a lot of people that have financial stress and, for- Oh, for sure ... for us it's just, not... Having a kid with a disability,, there's just that financial stress there that- Mm-hmm I don't even know how to explain it. Most of Remi's 

Deonna: medications- Well, it's if they don't, if they need it and it won't be covered- Yeah ... allie has a med that isn't covered. Well, she has to have it, so me and- Yeah ... [00:11:00] Dane have to pay for that out of pocket. Mm-hmm. Which is fine, but it's a lot of money and no one cares. The insurance- No ... doesn't care. No. So, we're like, "This makes her life better in a huge way. We're gonna pay for it." 

Rhandyl: Yeah. But, the trade-off. The majority of her, of Remi's medications are y- considered over the counter. Yeah. Mm-hmm. And so yeah, I mean, it's... You add up all- It adds up I mean, it's just a lot. Yeah.

And then, being physically tired, Mm-hmm ... lifting our kids. I mean, they are only getting bigger. Mm-hmm ... and so we're physically just... Oh, the load, the physical load, literal physical load is- 

Deonna: That one gets me bad ... hard. That one, yeah, takes me out. 

Rhandyl: And then of course lack of sleep. Like you said, it's like we have a newborn all of the time. Sleep is-

Deonna: You should relax ... you should sleep. 

Rhandyl: Mm-hmm. Yeah. Oh, and then there's a lot of caregivers that have to, deal with our kids' behaviors and anxieties- Mm-hmm ... and their own depressions- [00:12:00] mm-hmm and help them through that, and like for Remi, it's different than Allie. So like for me- Yeah ... I'm constantly having to try to figure out what her needs are. Mm-hmm. She's getting better about communicating , but trying to figure what she needs, but also try to explain to other people all of the time, "This is- Mm-hmm she's happy," or, "She doesn't like this sound." Or, just, I mean, it's constantly I'm having to try to f- translate ... y- translate her, yeah. Mm-hmm. So, yeah.

And then just not being understood by 90% of your friends and family. I mean, that's no lie. Yeah ... it's har- I mean, unless you live this life, like we don't ev- expect people to understand it. Oh, no. But it's hard. No way. It's a toll that we ... It's a, it takes a toll on us because it's very hard to find someone that can relate to how much goes into caregiving. It's so much more on top of [00:13:00] parenting. 

Deonna: Well, and I don't know about you- And- ... but sometimes I think about girls that I knew that had disabled kids. I think about them, that I didn't understand them, and I'm like, "Why were they always so cranky?" Or, "Why were they always so short- Yep ... with everyone?" And then now I think about it and I'm like, "Oh, they're... They were barely hanging on." I just- Mm-hmm. You didn't know. I mean, it w- it is an- Yeah understanding thing. So I mean, it's very true. 

Rhandyl: It is, yeah. And then, the big one, one... they're all big, but worrying about- Yeah ... the future. I mean, we never know, especially in our situation, our girls are both really medically fragile, and it- yeah. You don't know ... I mean, honestly, you don't know whether they're gonna be there the next day. It's, like you said- Mm-hmm ... it's a constant fight or flight, like, when something's goes wrong. It's just like you're just waiting on a bomb to explode. And so yeah kinda-

Deonna: well, it's like what I've said before is like there's two versions of our future. There's either the, the version with them here, where we're [00:14:00] doing all this, and I don't take that for granted, and I'm glad I get to continue to, battle it out every day with her because I want her here. Yeah. But then there's also the if they're not here, and you're gonna miss them, and you're gonna be sad, and , so I mean, it's like there's no easy way forward for us, and me and- No ... you both know this. And so that's why the future kills me because I'm like there's no easy- way of life here on Earth for us in the future. No. We're either gonna be without them or with them, and them be, having to do all these things we're talking about. So yeah, it's tough. 

Rhandyl: Yes. Yeah. And like you s- you kinda compared earlier to the newborn situation. Yeah. If you think of it, so our situation's like a long-term. That's not a, just a short season of life. Mm-mm. You know, My son Barrett, he's five. And it's so nice now. He's pretty much independent- Mm-hmm ... in a way. Mm-hmm. Like, He's potty-trained. He eats [00:15:00] independently. He communicates his needs and his wants. And I mean, he can even now help out with small tasks in the house. \

Whereas Remi's almost 10, and she's unable to independently do any of the, these things- Mm-hmm due to her- Yeah ... disabilities. And so just, for people that aren't living this life, just to think of the newborn stage where you're in constant fight or flight. You're living on hardly any sleep. Your baby's completely reliant on you for everything. You have to try to figure out why they're crying. Mm-hmm. You don't feel comfortable leaving them alone- ... without a monitor. Mm-hmm. I mean, okay, so that's our life 24/7, and for me, almost 10 years. Yeah. So that- is caregiver burnout. Yeah. It's not something that we- That's what it is ... that we're, that humans are naturally like supposed to- Meant 

Deonna: to go through meant to go through for- At our age- yeah ... too. Yeah. Yeah. So I'm like, I'm 40 and I'm really feeling it [00:16:00] lately.

But and I think why we're afraid to talk about this with anyone outside of- Yeah ... our community I think there's a couple of reasons. The first one is like, we feel like we're, I feel guilty because it seems like I'm complaining about my kid, and I'm very careful, and sometimes I slip up and I say something in front of her that makes her feel bad. But there's times where I don't want her to know that I'm stressed or tired or whatever.

Like, The other day we were filling out all this crap, basically, for school. Mm-hmm. And it was all this silly, unnecessary stuff, in my opinion, but we're doing it and she could tell I was getting stressed, and she's like, "What are you doing?" And I was like, "Oh, I'm just getting y'all registered for school." Well, that was sort of true. I mean, part of that- Mm-hmm ... was the registration, but the main part of it was reading through a 20-page document that our administration just came up with about all these rules that [00:17:00] our nurses now have in the schools.

Rhandyl: So frustrating. 

Deonna: Well, I'm glad they have rules. I don't want nurses misbehaving in the schools- Sure ... obviously. But I don't have time to read a 20-page document and then schedule these meetings and do all this, and she kind of knew it was about her. Mm-hmm. And she's like, "I'm sorry you're having to do that." And I was like, "Oh, it's okay. I don't mind doing it. It's not you I'm frustrated with, it's your school people- School district ... that are driving me crazy." Mm-hmm. Yeah.

But, I get nervous because I, there's been a lot of times I have tried to talk about stuff like this in front of other people, and they're like, "Well, at least she's still here." And I'm like- mm-hmm ... she is still here. And I'm obviously- Ah ... very happy about that, but this is a full- 

Rhandyl: Toxic positivity ... 

Deonna: time, job for me to maintain the fact that she is here. If I wasn't doing- Exactly ... all these things, she would not be here. But sometimes we think, and I don't know if you have this really weird dark thought like I do, but sometimes I feel [00:18:00] like I don't deserve a break, or- Oh, yeah I feel like I don't deserve to be happy or- 

Rhandyl: No, completely. 

Deonna: And I felt like that really bad at the beginning of this, but like- Sure ... it was Allie's going through this horrible thing, so I don't deserve happiness, because like- yeah ... she's so upset that like I don't deserve this. Yeah. 

Rhandyl: And also I think- I think that's part of being a caregiver, but I also think maybe for you and I in the generation, we're millennials, that- Mm-hmm ... that we were raised and brought up in a, world that we need to just grind and- Mm-hmm.

Yeah ... 

self-care and things like that were thought- 

Deonna: That's new.

Rhandyl: That's a... That was like, "What are you doing?" Like- yeah ... grown-ups don't do that. Like- 

Deonna: Well, we both- So I think- ... grew up in the country. Yeah, for sure. There was a- that might be different. 

Rhandyl: Yeah. But I'm just- Uh- But no I totally, I mean, I'm a, busybody workaholic. Mm-hmm. I... And if, and I feel, I catch myself, like you said, I mean, I catch [00:19:00] myself feeling guilty for taking a break. Mm-hmm. 

Deonna: Yeah ... I- I, there's times where I've gotten better about it, and I'm gonna talk about that in a minute, but there's times where, Dane will have a day off, and he's doing this, doing that, doing this, and I'm like, "Hey you could sit down and just chill." And he's starting to get better about it, but for a while he just felt almost like he had to just be vigilant. He had to have something ready, and stuff like that. And I think that- Mm-hmm ... a lot of the guys go through stuff like that.

But a lot of us feel this way. It's like we don't wanna talk about it 'cause we- We're gonna... we think we can do it better than anyone else. So it's I, it's like our f- w- I feel like it's my fault that I'm tired because I take on everything, which- yeah ... I have turned a lot of stuff over to the nurses in the last couple years, but, Yeah ... and sometimes my- I feel like- ... kid only wants me to do it, whatever- Right it is, and then I'm like- mm-hmm. Or she'll be like, "I need my mom to do this. Only she can do it the right way" ... and then I'm [00:20:00] having to go in there and do it. Or, and it's like, ugh, but- yeah ... I do it- no, I- ... ' Cause that's what she wants. 

Rhandyl: Yeah. I get that. I, oh, I, this was really hard. It still is really hard. I still find myself micromanaging a lot of people- Mm-hmm ... all of the time. But this is a bad part of my personality type, honestly, is that I just feel like I can do it- 

Deonna: You're like, " move out of the way" ... 

Rhandyl: better. But I don't know. Oh, yeah. That's- I don't know. That's the older sibling situation. I don't know, but- 

Deonna: Yeah ... you're like, "Can you just move? I know what I'm doing." I, yeah. I know. It's hard. We both are older. It's, yeah. Yeah. That's never good.

And I see a lot of parents who say things like this "If I'm not up working, we could be doing more for our kid. There could be some stretching we could be doing with them. There could be this-" "... there could be that." And at the beginning, I know you said this a lot, like you were just- Mm-hmm ... trying to learn everything and just freaking out, trying to be the [00:21:00] best you could, and that's kinda how we were too. But I did remember feeling like- If I ever even was relaxing for a second, I was like, "I must have forgot something- Mm-hmm that I shoulda done because there's no way I should be having any time to myself." It was that level of difficult, like- Yeah. Oh, yeah ... just how much stuff we were doing.

But, I mean, those are some reasons, I don't know, that we just I get nervous to talk about this with people because some moms will be like, "Oh, I know exactly what you're saying. My kid had the stomach bug last week. I was so tired." And then I- ... just get mad. Yeah. So I just don't tell anyone about this. 

Rhandyl: Well, it's just, yeah. It's so hard for people to relate to that aren't living it. 

Deonna: And sometimes, like me, like at church or something, like me and my friend Samantha, someone'll be complaining about how they had to take their kid to the doctor, and me and Samantha- are just looking at each other with like eyes like, "Are you serious?" But I'm like- ... it's, it happens.

But we actually asked this question [00:22:00] to y'all, our listeners, and I would say it's n- not the best participation we've ever gotten. Responses. And it kinda made me laugh because we were asking like, "What are your tips for avoiding caregiver burnout?" And just, like nobody knows- Yeah. ... or has any ideas. So we're like, "Great. Now me and Rhandyl have to share all of our stuff." But we are gonna share the ones that did do it, and we always appreciate you guys when you do this 'cause- Yeah ... it makes it better. Thank you. 

But, the first one's called, rolling with- The Z, I think. But she was- Mm-hmm ... on Instagram, and she said, "Even when you get a chance to go away, I still can't relax because I'm always wondering if they got their medication on time. Is he doing okay? Then I'm burned out on vacation and need to get back home to be a part of the burnout."

And- ... that, so obviously that's not a tip on how to avoid it but yeah, like, when I'm away from them, even for a couple of hours, even with my typical son sometimes I'm like, [00:23:00] "Are they okay? Are they doing what they're supposed to do? Are they," you know- ... whatever. Yeah. But yeah, when you get back, it hits you like a Mack truck. You, even if you did get to relax, the second you walk in, if y- it's like good feeling's gone. Like- oh, yeah ... it just hits you, and you're right back in it, and everyone's yelling your name again, and the- whole vacation, I don't know. It's like, okay, I don't know why I did that, but- Yeah ... I mean, is that how you feel about that? 

Rhandyl: No, for sure. I laughed at this one 'cause, , that's exactly how I feel. If my husband and I, or just me j- if we go out of town and the kids- Mm-hmm ... stay with caregivers grandparents, whatever. . You're always checking your phone, and you can't- yeah ... you really just can't- Can't fully take a breath ... fully, yeah.

Because, I mean, it's happened to us. We've been out of town- Yeah, it has ... and we've gotten a call in the middle of the night from night shift nurse, and- Mm-hmm the other caregiver that was at the house with him, and with [00:24:00] Remi, and she's- headed to the hospital ... going to the hospital, and- Yep ... we're three hours away. Mm-hmm. So, that was a nightmare that- Came true ... our fear that I had, and it came true, and- mm-hmm ... it's awful. And it took a bit for me to be comfortable doing it again, but it's like, if you don't do these things, which we'll get into in the tips, like- yeah you're gonna go crazy. Mm-hmm.

So, yeah, but another listener from Instagram called @adultspecialneedscaregiving, they said, "Eat chocolate hidden in my closet and cry a little- Yes ... and then I go back to the kids. Honestly, it's tough, and I'm still trying to figure it out." I laughed at that one hard- Mm-hmm

because we all have our vices. I'll be the first one- Yeah ... to say mine is wine. It has been since Remi was born. I typically every night have a glass of wine. It's like- Yeah ... when I finally get the kids down and I shower, it's just [00:25:00] my vice, and I will... And chocolate is also one of them. But so it's just getting, this is just kind of like a, let me just get away, and I'll even like, just sometimes I don't even know if I should say this, but if I'm gonna get caught and called out- Oh, my gosh pretend I have to go to the bathroom just to go- Yeah ... lock myself in. I 

Deonna: have to go to the bathroom for a really long time. Nice job. Yeah. Well, and it's funny that she said the eating chocolate hidden in the closet because I had a bag of Halloween candy- ... like Snickers, like the good stuff- Big ones. In my closet un- back behind all my clothes, and the other day- ... Dane runs our , vacuum in there. And he's like, "Did you know you had a bunch of Snickers in the closet?" I was like, "Yes, I did know that. Put those back where they were 'cause I'll just go in there and sit and but- That's awesome. Yeah. I was like, "I did know they were back there," but yeah. You gotta have something to look forward to. Oh, my goodness. [00:26:00] Oh. That one was funny.

Another one life coach, I think it's Life Coach Hina, she said, remember the three S's, social support, self-compassion, and self-care. And so we're gonna talk about that here in a second, but- Yeah I do think the most important about that, most important one of these is the self-compassion. Just we're so hard on ourselves. Mm-hmm. I don't know why we are. We're just like, I expect- Ooh ... so much of myself. Like I mean- Same ... and I really don't expect much of anybody. I really just think most people, I'm like, yeah, they're gonna let me down, but I know- Yeah i'm not gonna let myself down. And so I just put so much pressure on myself, so I was like- Yeah ... I needed to hear that one for sure. 

Rhandyl: Yeah, those are good, the three S's. Yeah. 

Yeah. Our friend Ruby Mosley, she commented on Facebook, and she said, "Solo trips, even just for a night. If you can't get away, even having someone take [00:27:00] night shift while you're at home so that you can get a solid night's sleep." And she said- Mm-hmm ... "In parentheses, we don't get nursing anymore, so nana sleepovers mean I don't have to wake up to formula feeds at 2:00 AM." Mm-hmm. Uh, trying to schedule things where you get to be mom and dad instead of nurse, even if it's just for a few hours. 

Deonna: Which you were gonna talk about that one- it's- a little bit. 

Rhandyl: Yeah. Yeah, that's, those are some big ones in my things that I've learned to do as well. 

Deonna: Yeah. I think that's good advice.

And then our last one that we had this time was, this one made me laugh the hardest. This girl on Instagram, @confessionsofahartmama, just said, "LOL," because it's so true. I'm like, we're asking these people to give us good ideas, and it's just okay, yeah, laugh out loud. I don't e- I can't even think of any, so me and Rhandyl did- Mm-hmm ... think of some. Yeah, that one's funny. I'll- We did. We try. We're trying. 

I'll let you go first. And ours are different, and these are just what works for us and our personalities, but [00:28:00] maybe if you can even take one or two of these and add it into your life, like maybe this episode will be worth it.

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Rhandyl: Yeah, ... I always wanna say we're lucky enough, but not really. , If your kid h- is able to get private duty nurses I highly recommend it. So that's- 

Deonna: They're in really bad shape- That one- ... but we're happy for you. 

Rhandyl: It, yeah. Yes. Oh, man. Respite is something that some states offer through different programs for- Mm-hmm ... someone can to come and help you with... And respite is for the caregivers just to help you With your small daily chores- Yeah helping , with all sorts of different things that, that they, Like it's 

Deonna: an actual person coming in- Yes ... and doing these things for you 

Rhandyl: Person coming to your house. Yes. Yes. Helping with laundry- Like that helper ... dishes. Yes. Mm-hmm. Helping with Remi's cares, with the nurse, whatever. It's a huge...

I did not take advantage of it for a long time. I do now, and I cannot say enough about 

Deonna: how helpful it is. You are their biggest, you know- Yeah ... [00:30:00] yell- telling people about it. 

Rhandyl: Yes. Get respite if you have the hours. Uh, yeah. Yeah. Could not do any of the following things without my daughter's private duty nurses- and my respite- yes ... girls. Could not. No.

The time away with my husband or friends, even if that's, it may not be some, weekend trip or something. Yeah. But even if it's just errands, or going to lunch- ... or dinner, whatever is huge .

And then for me, meds I eventually- gave in to my anxiety and I take daily medication, and that has helped. But I have noticed, so another thing is physical activity. I have noticed since I started taking my medication, that I don't have the drive to work out as much. Oh, really? So I really think that my drive for working out, especially back then before, was it really helped me with my [00:31:00] anxiety and- yeah ... things like that.

But I'm still very big on physical activity, and for me that can be, I go on these crazy cleaning sprees, and I'm, like- ... sweating and my back's hurting, like after. Yeah. And then, like yard work, I get... Oh, it's, even though it's been crazy hot around here, but, like yard work and- 

Deonna: That's a tough workout.

Rhandyl: Yeah. But I, and sometimes it just makes you feel so good. You're outside in the sun. Mm-hmm. Like we said, working out, and then going for a walk in the neighborhood. This is just, even, this is with your kids, without them, whatever. Mm-hmm. 

Big thing for me is solo time. I- Mm-hmm ... do home health, so I'm driving between visits a lot. Sometimes I just don't listen to anything on the radio. Silence. No podcasts, no music, and , I just will sit there and pray or just- be present and- 

Deonna: Probably good for you. 

Rhandyl: Yeah. I don't do it that much, but when I do, I'm like, "I really needed that." Mm-hmm. And just watching a show that I love in my room by myself. That's... It's hardl- hardly [00:32:00] ever, but when that happens it's nice. Mm-hmm. And then also just taking a- the time when you are by yourself at, in a room at home for some devotional time. Like- ... I try to be conscious about doing that, and being present with the Lord.

And working is a big one for me. It... I didn't go back to work after having Remi for a few years, and it really does... it helps keep my mind busy and gives me- Yeah ... a sense of, another sense of purpose other than caregiving and parenting. And the great thing about what I do is I'm around other families, , on work days that are in my situation, in the same boat.

And so- yeah ... that whole feeling isolated thing I get to s- not get to see, but I see a lot of kiddos w- that are medically complex. And so I- Yeah ... get to, talk with those caregivers and give them also a sense of relatability. And so working has really helped me,

Deonna: I [00:33:00] believe. I could see- For the- ... how that would be that 

Rhandyl: way. Yeah. Yeah. It really has. And obviously that helps with the financial stress too. But- yeah ... uh, and money. Oh, just, yeah. Yeah. That too,

but... and then huge one, family support, which- Yeah, you have good ... I have wonderful parents. Mm-hmm. And they're so supportive, and literally even though they're three hours away, they will in a heartbeat if I call them and I'm waving the r- white flag- Yep ... like- yep ... they are on their way. They will 

Deonna: be here. And you know it's bad if we're willing to ask- ... for help. They're like- Yeah "whoa, she must be about to die." Yeah. 'Cause that's how I am too. If I'm- Yeah ... asking for help, they're like, "Oh, shoot. What's going on?" 

Rhandyl: Mm-hmm. Yeah. Exactly. Yeah. And being present. I've talked about this a lot on previous episodes, but I have to consciously make sure that I'm doing something with Remi that isn't medical care. Mm-hmm. Like we were kind of talking about that earlier, like- yeah ... , you're just so focused on making sure that they're, like, [00:34:00] okay medically, that sometimes ... I just really have to be, make sure to be present and- yeah ... I know what you're saying ... during the times of day, which for us is usually in the evenings when we're all together as a family and it's only for, a few hours before it's bedtime for the kids. And I try my best to avoid my phone and be conscious about that too, and just try to be present.

But and then focusing on the here and now, and focusing- ... I try to not focus too far ahead of- yeah ... the here and now. Um- That's good though. That's, yeah. It's good, but it's also bad. I get caught off guard with things. 

Deonna: You're like, "What?" But it's just- It's almost school? 

Rhandyl: No, for real though.

Deonna: Yes, it's almost school. 

Rhandyl: Ugh, this school year is already stressing me out and it's not even here yet. I know. 

Deonna: But- I'm already stressed. Ugh. 

Rhandyl: Yes. Yeah, it just took me a long time to remember and realize, the parenting and caregiving- Mm-hmm ... are two completely separate things. So for me- yeah with Remi as my [00:35:00] first, she was super medically fragile from the day she was born Right out of the gate. Yeah and so I was thrown into this, this is my parenting world. So my only focus for the first year and a half, two years of her life was making sure that she was alive.

And I mean, still- Yeah, learning ... obviously, but she is way way more stable now than she was. And so- Mm-hmm. Mm-hmm ... gosh, I mean, I was just constantly making sure medically that she- And I just, sometimes I remember thinking like, "I wonder if she even realizes that I'm her mom, or if she just thinks I'm a nurse- One of the- or if it's, or one of her- Yeah ... therapists or whatever. Yeah. I really struggled with her wondering that for a few years, and then I finally, once we got some good care, she was more stable, I was just switching kind of to make sure I'm consciously switching that role from caregiver to, to parent- Mm-hmm as much as I can, and that they are two separate things.

Yeah. That's very true ... [00:36:00] and so it's, and it's made our relationship our mother-daughter relationship so much better. Like- mm-hmm. I believe it ... I mean, it's because it's the way it's supposed to be. I mean, it's still- Uh-huh ...... different. It's never gonna be, the mother-daughter relationship that I had hoped and dreamed for. Nope. But it's so much better now that I can separate the two- ... and realize that it's so important to do that.

But okay, what about you?

Deonna: Some of mine are similar, but I- yeah ... the first thing is and this, we're all gonna hit moments of burnout. There's no way to avoid it- Yeah ... ever. Yeah. But I've learned that I have to have... in the summer, I've have felt very burned out. But in the school year- Yeah ... I really am pretty managed and okay. And I was thinking about this as I was, , making this list the other day, like- I have good habits in the school year that I'm rocking and rolling. We're doing these habits, and it's creating less stress. But in the summer, I haven't been doing a lot of those same things, and [00:37:00] so I've gotten more burned out. And so it made me realize that association, like when you have these- Yeah ... good habits that are maintaining- 

Rhandyl: When you have a routine, your school year, it's easy

Deonna: Yeah, like your house is not causing a burnout. You're... You know what I mean? Yeah. And so I think you have to realize, like you ha- I think for me it's where is that burnout coming from or where's that massive stress? Maybe it's your laundry. You gotta figure out- Mm-hmm ... okay, how can I develop that habit like so that doesn't get too crazy?

And so I mean- Yeah ... that's one thing that I do a lot. Me and Dane are very into habits, routines, structure. Yeah. We're both like very type A type people, and so, that's how I manage it, but that is not going to work for probably half y'all. Yeah. But the nurses thing is huge in our house, too, like actually letting them do their thing, relying on them not feeling guilty.

I, like if I sleep in a [00:38:00] little bit or something, I used to just beat myself up over that. Me too. So I was waking up super early for no reason, and Allie was like sleeping still and I'm awake, like why? So- Yes ... I mean, I've kind of gotten better about stuff like that.

But my Outlook calendar is my everything. And I think it, that helps me not get burned out because I kinda can look at my week and- yeah ... it's color-coded 'cause I'm a psycho. Yes. But like I can get in there and be like, "Okay, I'm okay. That, I don't have to do that till Thursday," or, like that's- 

Rhandyl: Yes, the calendar is awesome ... better. Yeah. A game changer for sure.

Deonna: I do have to leave the house sometimes 'cause I'm a stay-at-home mom, so like I work from home. Mm-hmm. I do have a job, but it's from home. So like the other day I was about to freak out and I, uh, Dane was at the house and then all the... Both my kids were there and one of our nurses was there, and I was like- Bye "hey guys, I have to [00:39:00] leave now. I'm about to freak out." And Dane was like, "Oh, okay." I was like, "I really am about to freak out. I have to go." And he's like, "Okay." So I went and just looked at thrift stores for three or four hours- Nice ... and then I texted him and was like, "I will bring some food home." Yeah. But when I got back I was fine, but I really was- You just needed- ... about to lose it. But yeah, just leaving the house and doing a little thing. It doesn't have to be- Yeah ... these big vacations or anything.

But something I've noticed is these go hand in hand, but you have to have a hobby or something. Your hobby cannot be medical care of your kid. It's- Yeah ... gotta be something else. Now me and you have the hobby of doing this, and it's fun and it is related- Yeah ... to our kids, but the things we're doing have nothing to do with the kids. It's all totally separate and it's been a fun hobby to have, but like I love to read now. Mm-hmm. That is huge for [00:40:00] me. And there's times where they're like Mom," and I'm like, "Hey, I'm reading right now. Y'all do your own thing." And I know some parents can't do that because their disabled child does not allow for that. Sure. So I do get that, but if they do, just even 10 minutes of doing something just for you is big.

But- Yes ... also, and I think this helps with isolation, like I've always fangirled out over things. Mm-hmm. If I'm reading a book or watching a show with everyone else in the world, like it's so fun and I like to be a part of those things, and I think it helps you... Like last year, I was watching The Summer I Turned Pretty and reading it with everybody else, and it was super- Mm-hmm fun. And it sounds kind of silly, but when you are a part of these- No, but relating to- you know? Yeah ... fan groups. Yeah Fan bases with people. Yeah. It's just fun, and it's something you can just have a good time with and [00:41:00] feel a little less kind of isolated and stuff. So- Right ... I think doing things like that.

I think learning something new is really good to get your brain out of a- 

Rhandyl: Yeah, you're better at that than me ... 

Deonna: anxiety. Yeah. Mm-hmm. Like I, like a couple years ago, I was like, "I'm gonna teach myself how to bake over-the-top, cute cakes and stuff." So I spent a whole year teaching myself- Yeah ... how to do that. And they were so cute. And everybody was involved in it. If I didn't post a cake every month, people were questioning where the cake was. I mean, it was a fun experience. But I do calligraphy, which I've done that Allie's entire life.

But you know, drawing or like the other day, one of my nurses bought me this puzzle. It's called a book nook. Have you seen them? Yes. So- Ooh, nice ... they're like hundreds and hundreds of pieces, and I don't like puzzles, so I was like, "Oh, no." But, I wanted the final product, which is this little tiny house that you can put in your bookshelf that lights up. So- [00:42:00] Oh, cute ... I did it. It was so fun. I mean, for about a week, every day for a couple hours, I worked on this thing. Nice. And it got me out of my head, and it was- Yes ... fun. So just challenge yourself to do something for you. It can be something silly like that puzzle. It doesn't have to be something crazy. But- Yeah ... anytime you can do that. But

I love to go see a movie by myself. I do this- Ooh, yeah ... all the time. I don't invite other people to go with me. I just go by myself. I love it, and you can just go see what you want, and I think- Yeah, that's great ... that's kind of a fun thing to do.

But as far as the sleep goes- I protect my sleep. I've kind of gotten where I was like a little bit of a night owl, which sucks, 'cause then the next day I'm tired, but- Yeah ... like I do try to do the right things with sleep, 'cause that makes a huge impact when I'm super tired, but it's- Oh, yeah ... so hard because if we have a nurse [00:43:00] call in- Mm-hmm or something like that, but yeah, I mean, we can protect our sleep sometimes, and if you can, I do think that's huge. Sleep is obviously important, but- oh, yeah ... like I said, if you don't have somebody there, that goes down the drain. I think, like you were saying with the yard work, like getting outside, touching grass, like- 

Rhandyl: Yeah, that's kind of my hobby

getting in the sun Like you were saying, I was like trying to think- Oh, man ... what it is, and but I love, like gardening and- Oh, yeah ... flowers, and we have a vegetable garden this year. It's not great but it's- But it's something- I mean, it's fun and- ... that you're outside and- Yes ... 

Deonna: but that's huge. But working out is huge for me now because I'm starting to realize, okay, my kid's getting heavier- and I'm like 5'2", . Petite. Yeah. Crap. Like I've gotta get stronger. And so I've been doing as much as I can with that. But it is, like I said, like in the summer I haven't been doing it, so then I've been feeling kind of- Ah ... not great. So I mean, but, I [00:44:00] think when you can feel it happening, like what we were talking about filling out that school stuff- Mm-hmm I was, like, freaking out. I was texting you asking you about it. Yeah. I was getting so worked up over it, and then I just went in there and sat down and breathed and you can catch it and be like, "I gotta calm down- Yeah ... I gotta do something different." Redirect your thoughts yeah.

But I don't know if you feel this way, but sometimes just having moral support from somebody is enough. Like if my mom and dad come into town, if I'm really stressed or having something go on, they may not be able to do everything that I do- Right ...... but they're just there, and they're make- they're helping me with the food, and they're just sort of, in the house being a presence, and it does help. So I think that one for people who wanna support people, just being there and being around or- Yeah ... whatever- 

Rhandyl: And even- ... [00:45:00] is huge ... not even present, but like you were saying with the school thing, I mean, just the fact that you texted me and we're sharing our frustrations about the same thing, yeah that's moral support. Just- Yeah ... being able to f- find someone that you can be helped- Well, yeah, I felt- yeah ... 

Deonna: like I felt relieved that you were equally annoyed. Like- Yeah ... and that's funny 'cause I don't want you to be upset. But I was like, oh, she's mad. No, but it- Okay, yeah, this is worth- So, yeah being mad over. Okay. 

Rhandyl: It's validated now. 

Deonna: Yeah. And I think, too, it and me and you both struggle with this, but accepting help from people who are, like, full-blown offering it. I don't like to ask people for help, but there are times someone's offering it, and I still tell them no. I'm like- mm-hmm and when they take that little thing off your plate, it can help you avoid the burnout. But that one's- Yeah ... super hard to do.

One, I've noticed I used to be, like, this DIY blogger and everything- ... I made was just over the top, and I was [00:46:00] creating these things, and like art and things like that. Yeah. And I think I had to have a little talk with myself at one point- ... and just say, "I don't have to be who I once was." I- Yeah ... I'm going to buy the pre-made- mm-hmm ... stuff. I got, like for Valentine's Day, I used to always create custom valentines for the kids. This is the first year, this year, I think, where I did that again in six years. Oh, wow. I was just like, "I'm gonna have to buy the Walmart ones. I can't do these crazy things I used to do." Yeah. But I mean, just allowing myself to simplify my life- Be it's okay ... was hard. Yeah. Yeah. Yeah. But- 

Rhandyl: Well, and I've never been, like, the, the small crafty type, but I- Mm-hmm ... used to I loved like, refurnishing furniture and- Oh, that's so hard um, Chalk painting and- Mm-hmm ... doing all of that stuff. That was my thing, - Mm-hmm ... before kids and... Yeah, no. I mean- you can't do it anymore ... wayfair's delivering that [00:47:00] to my house. No. Yeah, that- I can't. I have, do not have the time or the patience or the want to. Yeah. But- oh, yeah. I- You know, I look at that furniture that I did, and I'm like, "Oh, that girl had- Remember when I had time? ... so much time." 

Deonna: Yeah. I miss her. But and then too I've talked about this before, but if you have little things to do, little things to look forward to every day, I think that can be huge. Like- Yeah oh, tonight I'm gonna get to sit there and read my book before bed. Mm-hmm. That's huge. It doesn't have to be a big thing, but I always, every day, am thinking of something I wanna do that I'm gonna like to do. 

Rhandyl: And- I need to do that more. Yeah. I feel like I try not to do... I, this is so silly and subconscious, and it's n- this is not a tip for anybody, guys. Yeah. Deonna's tip is- Don't do this ... but this is what I catch myself doing is, like- I may think about something that I wanna do, but like I don't wanna look forward to it [00:48:00] because- It may not happen ... the next person's gonna call in or- Yeah ... there's gonna be... it's... And I catch myself even doing that just with anything that you're supposed to look forward to. Mm-hmm. I'm like, "Don't talk about it. Don't jinx it. Don't..." Don't be like me. Do what Deonna said. 

Deonna: Well, and I think, yeah, like there's times where we'll look forward to something kinda big and it- ... doesn't work out, and then- Sure ... you're so disappointed. You're like literally heartbroken over this- But- thing you were gonna do ...

Rhandyl: for sure. But I think it's- But- ... good to do the daily things, too. I need to- This- ... be better about that. 

Deonna: Yeah. I feel like if you do little small things, it's not as disappointing- Oh, yeah ... when it doesn't work out. But over time those can add up.

But I- I've done terrible with this summer, but like what you were saying about like quiet time, like I have done terrible with reading my Bible this summer. Yeah. And it makes me feel so good, but I do take the, pray continuously verse very literally all day. Yeah. I'm just having this inner [00:49:00] dialogue with him all day, and I mean, I think that does help feeling close to him and things like that. But yeah, the reading the Bible thing... cole reads his Bible, my son, every day. And he's like- Yeah ... "Did you read your Bible?" I'm like, "Uh, no, I did not." So yeah. Terrible. But...

and this is the same thing, but like the little micro breaks, like just little moments- Mm-hmm ... here and there can add up. But me and you are both into decluttering spaces. Yeah. I think if you have a home that is m- minimal and- Yeah ... kinda decluttered, it can help with caregiver burnout. Like- Oh, yeah. It- ... yesterday, uh, our nurse Macy was like, "If something's missing in this house, it just is gone because there... it's not in this house. It's somewhere out in the world because I've never seen you guys not be able to find something in less than five minutes." Yes. ' Cause we just don't have as much stuff.

We've gotten rid of [00:50:00] so much stuff since this has happened because it was causing- Like, like a burden to me yes ... like just stress and stuff. So if your house is causing you stress, just start with one drawer and just start going through- Yes ... and just being like, "Do I actually need this in my current life?" Because- 

Rhandyl: And do that- ... ... and do that, like twice a year. Oh, yeah. I catch myself doing that usually, like it always ends up being the beginning of a n- of- Around the holidays. Yeah. Right after the holidays- Yeah ... beginning of the new year, and it's like it's not because I am a big New Year's resolution gal, it's more because I'm like putting all this Christmas stuff up and then- Mm-hmm i'm having to pull out all the stuff that I had to h- put up other stuff, yeah ... and then I'm like, "No." And I just end up purging and donating

and then I consign, uh, my kids' clothes, and so I do that twice a year, and there's event dates, and so that helps me like- Yeah. Oh, yeah, yeah ... let [00:51:00] me just go through, ... but yeah, I just was noticing the other day in my own closet, I was like trying to find something, I'm like, "I've got to just purge this." And it hasn't even been a year since I did that the last time. Oh, no. But it does, it helps so much, 

Deonna: It makes you feel good

Rhandyl: to just have less stuff. It does. 

Deonna: Yeah. And it's, I could talk for hours about this because I, you know, like I- we are, me and Dane are both not sentimental people, and we, yeah, we don't actually have as much stuff in our house as probably the average person. But there's these guys that I follow, they're called The Minimalists, and they basically say every single thing that you look at with your eyes every day, all day long, it's causing a mini reaction in your brain that's either good or stressful. And so for us, who are under a lot of stress- mm-hmm ... when you're looking at these things in your house that are like causing negative feelings or something like [00:52:00] that- Yeah ... you don't realize it, but your brain's having these little moments of stress, whether you realize it or not. Mm-hmm. So yeah, me and you both are big like clean out people, but yeah, I mean, that's a huge thing for me.

But we both are also big massage girls. Mm-hmm. I love going to get a massage. You don't have to go to the big fancy spas. No. Which I love the big fancy spas. Yeah. But, they're reasonably- Refugery yes ... places. But we love that.

But having boundaries with people so that you don't have the burden of having to just give yourself to everyone. And that one's hard- Yeah ... but there are times where somebody's like, "I'm in the neighborhood. Can I come over?" And I'm like, "No, today's not a good day. Thank you." And sometimes I will say yes, 'cause it is a good day or it's fine. Yeah. But you really don't owe everybody access into your life, and- Yeah ... that's a tough one to learn. And [00:53:00] it's not a mean thing, and- Yeah ... you can still have amazing relationships, but I actually don't feel like I owe anyone access into my life or my kids or any- Yep of that anymore. No. If they, if it works out, it's good, but- yeah ... you have to be able to, have that boundary. 

Rhandyl: You do boundaries, and it, like we've said it a lot, like your circle will just get smaller naturally. It's okay. It just does, and it's fine. And I used to be- We're not sad about it.

Yeah, and for me, like I was the friend that was like, and I still am for people that share the same qualities as this, but like- Yes ... I always wanted to be there for everyone, no matter what. You can't be. And I am definitely not that girl anymore. I am for the ones that, have been here for me. There. But yeah, boundaries and-

Deonna: It's gonna drain you to- oh, yeah ... zero. 

Rhandyl: We are already burned out from all our [00:54:00] talks with- yeah ... people we're talking about right now. 

Deonna: Like- Yeah, no, it's, yeah. So- I mean, I think that's important even though it's hard.

But something I just read the other day, and I've been trying to do this, and I thought this was really cool. But I saw this video, and this girl was scrubbing the dishes really fast and hard like she was- Mm-hmm ... in a hurry. And then she stopped, and she took a breath, and she started just scrubbing them at a normal pace. And she said that a lot of par- people who've been through trauma which I think just sometimes raising a disab- disabled child period is a traumatic experience. Even if- Oh, yeah ... you've never seen your kid almost die like me and you, it's still just mini traumas that happen every day, all day.

But she was basically saying "You don't have to do everything like it's an emergency- because then your nervous system thinks you're experiencing an emergency all the time." So she talked about [00:55:00] slowing down, doing things at a normal speed. And I was telling my husband about that, and he's like, "Me and you do everything fast. We're always like- ... pulling her meds really fast or doing this really fast." And I was like, "I know, and why?" Are we in- Yeah ... that big of a hurry? Not really. I mean, there are times we are, but like even getting her in the car we just act like we're like Indy 500 pit crew every time. And you're just like, "Chill," mm-hmm. So I think that one's been good.

But the last one I have, and I think this is an, a way to kind of wrap it up, but, and we've talked about this a little bit, but you just have to remember who you are and that you are still Uh, some version of that person. Yeah. You may not be... I mean, we're both forever changed by this, but I've seen moms get so lost in this that they just live in a constant state of caregiver burnout, and they [00:56:00] don't know- Mm-hmm ... how to, they don't know anything else. It's just- yeah ... the caregiving has become their entire- Yeah ... like- it can't- personality- ... end there, personality ... their entire identity. Yes. Like, I have a lot of other, and so do you. We have- Yeah ... a lot of other parts of our life and parts of our personality or identity, and so if you feel like your entire personality is caregiving, maybe just kind of start looking for things you used to like or- 

Yeah just kind of, think about that, and I think it'll make you feel a little bit less burned out if you can just find anything- Yes ... that you like and that you want to do. I mean- 

Rhandyl: I- ...... it's so funny that we're talking about this, 'cause I was driving today, and randomly, I hadn't heard this song in a really long time, but Miranda Lambert's The House That Built Me song. Oh, that song kills me. I'll never forget that song. Oh, my gosh ... when it first [00:57:00] came out, I would just bawl and bawl because I, I had this house from when I was a little baby till I was 12, and we moved away, and then , my parents moved when I was on a vacation with a friend, and when I came back I didn't really get to say goodbye to, to the house. We were just in a new house- Uh-huh. yeah ... so I didn't get the- Yeah ... closure.

And anyway, but the moral of the song is basically don't forget where you came from and where, what you- Yeah ... who you were before all of this stuff happens to you. And it is so important to not let, the caregiving role of your life take over you and yourself. Mm-hmm. Like, so , I think it is, , a great way to wrap this up and just- Yeah ...

hopefully you guys can take some of what we've said and think about what you could do. And also for those that aren't raising disabled and you're not a caregiver or say you are for a parent, say you're a parent or- Yeah it's- It can be a lot of things ... so many things, but or you're not in that phase yet, or [00:58:00] you never will be, whatever. I think anybody can take advice from this, even if you're in the thick of parenting. But,

Deonna: Yeah. I agree, and I think even regular moms and dads get so wrapped up in their kids it becomes their entire personality. Mm-hmm. And we all are like that, but I will say if you're at the beginning, you've heard this story from both of us today, like we both were super, super focused on that caregiver part for years. And then all of a sudden you sort of start to...

I actually avoided doing anything I liked in the hospital time because I was afraid I would associate this thing I like with the traumatic events- that we were going through. Mm-hmm. So my favorite show is Downton Abbey. I would not watch Downton Abbey during that entire six-month period- Yeah ... because I was like, "I don't want to associate..." 'Cause I do. No, I can see that. I associate- Sure ... a lot of things that I did- Same ... with that time. [00:59:00] And I can actually hear the beginning to a couple of shows and almost have a panic attack- Triggered because it reminds me of that. But, yep ... 

at the beginning you are going to lose yourself into it. It's just gonna be you being a probably good parent at the beginning. Right. But this is for years down the line. You can be you again. Yeah. But we... Yeah, and if you feel isolated or anything, that's why we do this. Yes. This is why we have the podcast. This is why we have all of our social media, is to have a place where people can come be real and share what's actually going on in their life without any judgment whatsoever. 

Rhandyl: Exactly. And so- And you can always DM us, like we- yes ... no promises that we'll get back to you within, you know- 

Deonna: Five minutes, but- yeah. Yeah. 

Rhandyl: But we will. We- yeah ... we read that stuff and 

Deonna: so we hope- But no, we... I think this was a good episode for me to really actually think about what I do [01:00:00] and if- Me too ... it's a good behavior or a bad behavior because, you know- Yeah ... I do both. But, Oh, yeah ... no. We had fun with this one, and we hope y'all took something from it, and we will see you next time.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.