Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Battling Caregiver Burnout: Finding Calm and Support in the Caregiving Storm
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The ceaseless demands of caregiving could be captured in the powerful metaphor of "death by a thousand paper cuts." Join us as we open up about the raw emotions and daily challenges faced during National Family Caregiver Appreciation Month. Ashlyn and Emily share their deeply personal stories, revealing the overwhelming cycle that comes with managing children’s return to school while juggling relentless caregiving tasks. Even amidst the chaos, there's a shared understanding of the necessity to find calm and peace, and we explore how acknowledging these struggles is crucial in supporting each other.
Imagine dealing with a child’s persistent asthma symptoms on top of already complex medical needs. In our heartfelt discussion, we touch on Charlotte's story, shedding light on how such health challenges ripple through family life. The strain of missed school days, the emotional toll on parents, and the constant fear of falling behind are more than minor issues—they’re daily battles. We reflect on how these health issues affect not just the child but every corner of family life, urging both understanding and a positive outlook amidst the stress.
Finally, we emphasize the importance of a robust support network, introducing the Parent Empowerment Network as a lifeline for those feeling overwhelmed. This community resource offers a place for parents to connect, share their stories, and find strength among like-minded individuals. We invite listeners to engage with this compassionate community, whether through social media or the foundation’s website, nurturing a space where shared experiences spark empowerment and hope. Join us in this episode as we offer a beacon of support, reminding caregivers everywhere that they are not alone.
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Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by Hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us, so together we can walk this journey in hope.
Speaker 2:Hello everyone, welcome to the Empowered by Hope podcast. It's your co-hosts, ashlyn and Emily. It's your co-hosts, ashlyn and Emily, and we are coming to you right now. It is November for us, and I just learned yesterday actually that November is supposed to be National Family Caregiver Appreciation Month, something like that. So, emily, I think that we could take a moment to give each other a pat on the back, because we're not so good at doing it for ourselves and anybody who's listening. If you're a caregiver, this is your moment. Take a moment, be proud and, yeah, we're in this together, right, and we're glad that you're enjoying this episode with us, because it's where caregivers come together to link arms and just not face it alone. Amen, so right, yes, so today's topic, let's dive into it, because it's a really good one, and it's one we've been excited to do more, so out of necessity for our own mental health, and Emily brought this up, I think, about a week ago.
Speaker 2:Emily, you've just been going through it for a while, which is also a funny sentence because, let's face it, we're always going through it. Life is always just a happening, life is lifing, as my sister likes to say, and there's been no shortage of that, especially since you got the kids back in public school. And I think today the best thing we could do is open up with you, sharing what has been going on in the Whiting homestead. What has life been like and what struggles that has and turmoil, you know, that has brought up for you. And then my role is going to be as your you know your supportive ear.
Speaker 2:Today I'm going to walk through these emotions with you because you and I both know that everyone who it's part of being a human honestly having to find ways to find your calm, find your inner peace, when things are just a muck and chaotic and yet not even like big, tumultuous things going on, it's, it's you know the phrase death by a thousand paper cuts. I feel like that's kind of what we're talking about today. It's not a big, huge hospitalization, it's not the emergency, you know, room visits, it's it's the things that in the grand scheme, quote unquote sound like they're not as big a deal or in comparison to other things we face, shouldn't, we believe, should not get under our skin so much. But yet here we are ready to explode and we're going to talk about that today because it's just a very real part of the human experience, especially when you are a caregiver for children, with medical challenges thrown in the mix. So, emily, break it down for us.
Speaker 3:Okay, thank you for that amazing intro, ashlyn, and I'm just going to throw this out here to all you listeners. If our audio seems weird, it's because it is, and we've just decided that we're plowing on because this needs to get out there and we're not letting technology stop us. So sorry if you hear some glitches or some delays, but hang with us because this topic is really important. And so I reached out to Ashlyn last week in a place of just sheer exhaustion, and I think you guys will know what I mean. When I say exhaustion, I'm not just saying like, oh, I need a nap. No, I'm saying every bone in my body is screaming to lay down and every ounce of my being is just tired of the nonstop hamster wheel of caregiving. And here's what I mean by that. So basically and you set it up so well, ashlyn I love well I. You know I'm afraid to use this because I know it can bring up some other topics, but I love the phrase death by a million cuts Cause that's what it feels like. It feels like you know, I've been caught with really big cuts before and I've survived them. I should be able to handle all these little cuts, but when it's just a never ending barrage of little cuts with caregiving it is. It just literally drains the lifeblood out of you. So we're going to talk about this, and I was hesitant to do this podcast because I was like I don't have the answers though Ashlyn, I don't know how to handle it, and she was like that's okay, that's why we're going to do this together.
Speaker 3:So here's the scenario. So Charlotte, as many of you know, has many, many medical complexities over 20 specialists involved, has had over 20 surgeries, yada yada. Her heart's involved, her kidneys, things that are really big. So then when you throw asthma in the mix, I think small potatoes, no big deal, we can handle asthma. But here's the problem. So we've started school, and with school always comes germs, right, we know that. And so we have a proactive asthma plan, and every time so I have two other children, one on the way, so three I guess.
Speaker 3:Anyway, when the other kids get sick, they get sick for the typical period of time and then they move on and they carry on with life. When Charlotte gets sick, she is down and out and asthma. Even once the symptoms are gone, the asthma will persist for a month after at minimum, and again asthma, you think, well, as long as it's not causing or I think well as long as it's not causing respiratory distress, her life's not on the line. We can handle a little cough, but I text Ashlyn. Last week it was week four of this cough and it was not a little cough, it was an obnoxious, never-ending cough and I would time it and it was literally every two seconds round the clock coughing and I, I heard the cough, everybody.
Speaker 2:It's like that, uh that barking dry cough. So yeah, everybody, take a moment. You've heard it before. Emily's not exaggerating.
Speaker 3:Oh my gosh. And then here's the thing. So you think, okay, a cough, we deal with that. She doesn't have a fever, she's not hospitalized, she's breathing, we're not turning blue Like we're okay. We're okay and yes, we are okay. But here's the problem it affects everything. So now we can't go to school because and our school has been fantastic and very supportive but, like you, can't learn in an environment where somebody is coughing nonstop. I can't work because she's literally under my feet coughing and crying all day long, so I can't even hear myself.
Speaker 3:Think it's constantly on the phone with pulmonology being like now what do I do? Because I just did the nebulizer treatment and it did nothing. I went to the ER and they said we have nothing for you. I've started the prednisone, it's done nothing. We're on the Z-Pak, it's doing nothing. Oh, and, by the way, now we're dealing with all the side effects, with all of those symptoms, all of those drugs.
Speaker 3:And then the real kicker Charlotte is normally a ray of sunshine. I love our logo, our new Parent Empowerment Network logo, because she is a ray of sunshine, she is bright, light and she is joy even in the midst of hardship. But you put that girl on prednisone and she is not any of those things, and neither would anyone be with the steroid. So we're on week four of heavy dose steroid and she's eating like a horse. She can't eat enough, but she can't like actually eat because she's coughing. So then she's crying, so then she's choking, and in the midst of it she's so crabby because she's on this, so then she's crying, so then she's choking, and in the midst of it she's so crabby because she's on this prednisone and she can't sleep because it wires her. Plus she's coughing through the night. And so here's the thing.
Speaker 3:I just texted Ashlyn last week and I was like I don't know how to hold on to the typically like carefree, joyful, hopeful person. I am in the midst of this because I literally feel like I'm being frayed, I'm unraveling at the seams because there's just this constant overstimulation of of symptoms and care that's being needed and and just this nonstop barrage of my brain and and then on top of it comes the worry of like, oh my gosh, we were already behind in school because of all of our medical needs. Now we're crazy behind, and you know just, and then and then it can get really like. You know you're exhausted and you can start thinking like what is wrong with me? Am I dramatizing this, have I like? And then my husband and I we started like what's wrong with our house? Has our house caused all these issues? And we like buy air purifiers? And we're like maybe we need to get rid of the cat, and you know, oh my gosh.
Speaker 3:Anyway, the point is the problem, when you, or the challenge, when you have a child with a lot of complex medical needs and then you have this thing that, in the scheme of things, seems like it should be not that big of a deal, I find myself, I keep brushing it off, like oh, but we're not hospitalized right now, her life's not threatened, we're not dealing with, you know, major abdominal surgery. We're okay, we're okay, we're okay. And but, but I'm not. I text. Ashlyn was like how do you hold on in the midst of being just like frayed apart at the seams or like death by a million paper cuts? So, ashlyn, help us Okay.
Speaker 2:Well, first off, I am so sorry that you all are dealing with this because it is, I think, the best word to describe this and call it what it is, which this is obnoxious, and it is an ongoing obnoxious experience that you all are dealing with. Yes, you are being just assaulted with all of your senses and turned like just the sheer noise that a cough, the sound of somebody coughing over and over you know when, like, somebody won't like needs to clear their throat, and you're just like, just clear your throat, like that noise We'll try hearing that like all the time. That's going to drive anybody batty. And then there's the frustration that builds up from you are literally trying everything to address this cough and nothing is working. So then your slivers of hope start to feel like they're disappearing. Right, and we talk about how important a hopeful mindset is, because often hope is what keeps carrying us through, and when nothing is working and it's one of those things that may very well, just it's just going to take time to clear up on its own that can be really disheartening and frustrating.
Speaker 2:So I feel like number one grace for everybody in the whiting household, but specifically yourself right now, because I think it's okay to be feeling like you're going crazy, cause I think anybody would in your shoes. You know, and yeah, there are so many layers to this situation that can be peeled back. We talked about how, if it were me, I won't say for you, but if it were for me, I know that there have been times when my kids have been really sick and, naturally, various reasons it's made sense that I'm the one staying home with them. I'm the one staying home with them. And then, when it's an ongoing situation, there can be times where I'm just like downright jealous of my husband that he gets to go to work and only worry about himself, and then sometimes that can make me feel like maybe unnecessarily so, but like almost angry, like I'm jealous of you. I would love to go to that office and it not be my responsibility and you know. So there's that layer.
Speaker 3:I straight up told Daniel that last week I was, like you know, I really wish I was the one who worked outside of the home full time right now. And I was like, of course I say that fully knowing if I was the one doing that I would be distraught that I wasn't the one at home helping.
Speaker 2:So I fully recognize that, but right now I am so jealous of the fact that I, that you, get to leave Right, and and you know and I think you just pointed out something that I don't think we often give enough credit. So, like you know how often maybe not everybody, but I know that I do this I get so desperate for I'm like I have got to get away, like I am turning into, you know, takah from Moana, like the lava monster, like I am, I am just not in a good place and then, you know, go away, or a weekend getaway happens and I miss my kids. But what I realize is it's not my kids that I actually need a break from, it's the never ending being responsible for the others. That's what I need the break from. It's that crushing responsibility that I think that's what can really be the undoing of us sometimes, because it's just, it is heavy.
Speaker 2:So I made a couple of notes while you were talking, and so one thing I feel like is important to address is so, yes, we all know that that Charlotte is, you know, girl, goes all out in all aspects of her life and she does have a lot of extreme, major medical challenges and battles and things that she's overcome. But you know, but I think it's important to help address your perspective when you said, like you know, in the grand scheme of things with Charlotte, asthma is not that big, but that is one of these. This is one of those times I think it's perfect to dive a little deeper and take a look at what your current perspective is based on all the really large trauma experiences. Asthma is still a big deal. And, like you said, the cough, you know it's making her stomach hurt, it's making it's, it's it's affecting other aspects of her body, it's it's affecting her sleep, it's affecting her schooling, so like there's lots going on.
Speaker 2:So maybe asthma is not as big as, like you know, a kidney condition or, you know, heart condition, but it doesn't mean that it's small. And I think reminding ourselves of that sometimes is an important thing to do, because otherwise I feel like it can kind of just continue to add insult to injury that mindset. And then the other thing that you know I've been thinking about a lot actually since you sent that text you know you're what you were. One of the things that you said was like how on earth am I supposed to like stay calm and and you know, and keep my inner peace not turned into, you know, as I keep saying now to car, yeah, that's a great visual, like how I visualize feeling as a frustrated mom.
Speaker 2:That's a great visual how I visualize feeling as a frustrated mom. I think one of the things that can sneak up on us is this idea of perfectionism that we're supposed to be calm and have a hold of our inner peace all the time, and if we don't have it all the time, then we're failing at it. But this is not a game of perfectionism. That is not the goal, nor is it even realistic. As a parent period, nobody has those feelings all the time, and so, just as your friend from the outside, all I would encourage you know, I think I recommended to you to go outside and let the sun, like, just, you know, keep your eyes closed and just let yourself be blinded by the sun for a little bit, like so that all you can see is bright light through your eyelids. I love that feeling. Or, if that didn't help, to go in and grab a thick throw pillow and, like, literally scream into it as loud as you could, just to release the physical turmoil that is stuck in your body from this.
Speaker 2:And you know, I think it's like, I think just acknowledging that you have a right to be feeling really crappy about this right now and really frustrated is sometimes all we need to help to start getting past. It is acknowledging that. You know what. It makes a whole lot of sense that I am going bonkers right now. This would drive any human being batty, and so you know what, I'm going to give myself permission to feel like that for a bit and then I'm going to move on. But I think we have to acknowledge those feelings and validate them for ourselves. Otherwise, all we're doing is repressing and judging and shoving them down further. They're not going anywhere. The rug's just getting a whole lot harder to walk over as we continue to sweep it under there with our emotions.
Speaker 3:That's a good visual, yeah, and it's. You know, it's interesting this whole and I do it a lot and I think it's a way of trying to like, um, because we have so many different complexities going on. It's a um, almost a self-defense mechanism to say, oh well, in the scheme of her whole thing, this is so small. Now, anyone who's listening, as a child with asthma, I realize asthma is not small. And especially on there's a spectrum of asthma. And you know, and I even remember, I said to our school secretary on like week two of her missing school, yet again, the words came out of my mouth and as soon as they came out I was like that's not true, emily. I said you know, in the scheme of asthma she's really has a mild case. And then, as soon as it came out, I was like no, emily, she does not have a mild case of asthma. It's so not true.
Speaker 3:But like my brain's constantly trying to prioritize, well, you know, we have kidneys having this issue and liver this and brain this, and blah, blah, blah and GI this, oh yeah, and then there's asthma, you know, and and same with, like, I was talking to a ultrasound sonographer yesterday and we were talking about cleft lip and palate Cause we were looking at the baby that is in my womb right now and she does not have cleft lip and palate, praise Jesus. But Charlotte does. And I I said to her you know, cleft lip and palate is, of course, a monumental diagnosis when you receive it, but really, in the scheme of diagnoses, very manageable but it. But it's funny how, like, the manageable diagnoses are the ones that affect every single bloody day. And I mean that, just like you can feel the desperation in my voice because, like, the cleft affects everything it affects eating, it affects speech, it affects breathing, it affects sleep, it affects so many things. And so, yeah, my brain is constantly trying to like, oh well, you know, in the scale of, you know, basically, life and death, this is good, we can handle this, but that's really not a healthy way to look at it, because then, purely for my own mental wellbeing, it sets me up for beating myself, up for being so overwhelmed by the reality that comes with it.
Speaker 3:And you made a good point, ashlyn, because sometimes I forget the barrage of things that can just overstimulate you when you're caregiving, and I often think, like over the last couple of weeks, I've thought about those families who are tuning in, who have children, who are wheelchair bound, who are feeding tube dependent, et cetera, oxygen dependent. You get this so well because it's this constant need, every few hours, or maybe even every few minutes, of having to do something for your child and it's just. Eventually it becomes part of your norm. But the turmoil of getting it to that place is such a huge, huge thing and so but you made a good point where you were like and also Emily, you still have two kids who need you and one who's growing inside of you and sucking every ounce of energy out of you. You know, and like the guilt of the subconscious, guilt of Charlotte takes so much of my focus. And then we've got the other two. I don't even know what they're doing, but they're somewhere in this house, I don't know. So, yeah, it's just, it's so overstimulating and, to your point, I think, just grace and a willingness to recognize that this just quite frankly sucks until we can get through it.
Speaker 3:The other thing, and many of you I'm saying this because I think many of you will relate You're not only dealing with your own emotions but, as your child gets older, you're dealing with theirs too. She, for the last two weeks has just been constantly saying why is this cough not going away? It's so frustrating it won't go away. I want to just play, I want to just learn, I want to go to school. And of course I feel her pain, but at a certain point I'm just like you've, you've got to stop, I can't take it anymore, right? So, yeah, yeah, it's, it's a lot, it's a lot, right, yeah, yeah, it's, it's a lot, it's a lot, it is a lot.
Speaker 3:And here's the thing Usually, when you're dealing with symptoms from one issue, generally the other issues still keep going. It's not like they hit pause because you know, oh, we have this cough, so we're just going to. You know, stop all urology issues and stop all GI issues. And like, no, that's not how it works. Stop all urology issues and stop all GI issues. And like, no, that's not how it works, so grace.
Speaker 2:I just need that and a big old sign on my mantle, there you go.
Speaker 2:Well, I think, to me you know, I was sitting here thinking about it I was like, okay, how can we be the most helpful to each other? Anybody listening we realize that, you know, not everybody is in a position or has access to you know somebody who can relieve them, right, who can jump in and maybe, you know, let you get away for a while. So if you don't have somebody who can come in and stay with your child for even one hour, if you can't swap for the day with your spouse or partner, another family member, I think it's really important to know that it is okay, like when you feel that that physical building of pressure, right, like it is a very physical experience, I think for most people. I think we try to ignore it a lot of the times, but literally stepping outside and just being breathing for a few moments, or, you know, some of you may have laughed when I said find the thickest throw pillow, you can, like, maybe designate a certain pillow. Your scream it out pillow and you either, you know you take a moment to yell into it. When you just scream, it actually does physically help relieve that tension in your body and therefore in your mind, like it's everything is connected. Take those opportunities. It doesn't have to be all or nothing. That is sometimes.
Speaker 2:What can get me in that spiraling down. When these situations are happening is I feel like you know, if I can't get completely away and have a whole day off, then then there's nothing that's going to help and I just have to keep suffering through it until it's over. Instead, where, instead, what I could do is you know, if your kid is coughing nonstop, they're going to cough next to you. Or if you're outside, you know, standing on the porch, they're still going to cough. If they can't be out of your sight, take them outside. If it's raining, open your garage door if you have a garage, and stand in the garage, but at least there will be some air, some fresh air. See, something different. It is like just breaking up the moment.
Speaker 2:But I think when we get stuck inside our houses, it can start to feel like the walls are just creeping in on you, and that adds a whole new level of panic to these situations, I feel like. And so just stepping outside of your environment is just such a small thing that you can do. That was my survival method. Was when things would start to get just so intense that every now and then, like I would just walk to the elevator that was outside the unit doors and I would just go stand in front of the huge giant windows and look out at the city instead of looking at patient rooms and monitors and screens, and that was just my way of physically removing myself from my stressful environment, taking a few breaths and then suiting back up to you know, go face the next battle. Yeah, so, emily, anything, is there been anything that you have found that has helped you? Or do you feel like you know how to handle the rest of your day to day?
Speaker 3:Well, the funny thing is I almost told Ashlyn this before we hit record and then I was like no, I'm going to wait and I'm going to say this on the podcast because as we were about to record this, I had to remind, I had to like put myself back into how I felt last week because this weekend she finally turned a corner and she still has a cough, but it's so manageable now. It's like every few minutes and no big deal. She's off to school. We're good, we're done with the nebulizer constantly all that stuff.
Speaker 3:Hallelujah, praise Jesus, yes, so, but what was interesting to me is my defense mechanism is like my coping skill is I just block it. I just like act like it never even happened and move on. And it's so subconscious Because when you said, oh yeah, we're recording what you brought up last week, I was like I don't know what I bring up last week. What was the issue?
Speaker 3:then, I don't know. So it's amazing, I don't know. But if I think back to what got me through, well, first off, part of my coping was reaching out to you and sending that text, because it was like blah in the text, right, and that helped. So bless you for catching me. The other thing is I am very, very, very blessed with an amazing mom who offered to help, and dad, and so I did get away for a little bit.
Speaker 3:My husband and I got a little bit better last week at cause I kept telling myself like we're going to get through this really soon. So, dan, you just keep going to work, I'll manage this. And then we did not get through it soon at all, and so I finally was like I need you to take a day, I'm out, I'm done, I can't, I need to, like I need to deal with all the other medical stuff that's been tabled for a month, because I've been dealing with her and I can't hear the doctor on the other end of the line. So I did that and what else? I did not scream into a pillow, but I did take your advice of going out and being out in the sun. We were very blessed with a very sunny week, so I was outside as much as I could and then just I had to keep like stopping and recognizing as she's crying and coughing at my feet, to just be like, okay, it totally makes sense that you are overstimulated right now. Emily just got to get through the next whatever and then step into the next room to distance yourself from the sound for a little bit or whatever. So, yeah, it was just it's.
Speaker 3:It's a combination of a lot of things, but it's funny how I cope by just like. I don't know. I'd be curious if you listeners do the same thing. If, like, you finally get through a really hard season and you just almost forget that it even happened. Healthy or not, I don't know, but I'm really good at compartmentalizing, for better or for worse. You are, you definitely are, so All right. But I will say one thing everybody needs is a friend like Ashlyn, and that is why we have Charlotte's Hope Foundation slash now Parent Empowerment Network so that we can be that for you. And so when you are feeling at the fray, you're feeling unraveled, reach out to us, go on our social channels, talk to us. We're there with you because we've probably felt it or are feeling it currently.
Speaker 2:Yes, you are not alone, all right. Well, thanks everyone for joining us. We hope you found this helpful. Let us know what you thought. And, hey, if there are any topics that you have not heard us talk about, any real life you know, practical situations or recommendations, anything you would like to hear us talk about, send us a message, let us know, whether it's on our social or reach out to us through our website. We want to hear, so we make sure that we are connecting with you on the things that are going on in your life now and that matter to you. So, with that, thank you everyone, and we'll catch you on the subscribe button.
Speaker 1:We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotteshopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share.
