Thank you for your support! Here's the link to watch the behind-the-scenes bonus episode on YouTube! https://youtu.be/0wW2SXTLaJs
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Thank you for your support! Here's the link to watch the behind-the-scenes bonus episode on YouTube! https://youtu.be/0wW2SXTLaJs
Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast and you're listening to after the confession. Now, let's listen in as it was just getting good
Natalie:guys, we are back with Heidi McCann for after the confession. And oh my gosh, Heidi, I was telling everybody that in the in the last episode that my my power blinked. And of course, that's the only reason JJ was allowed to speak, which is for all of you guys, I'm sure. And but there was, I missed I missed some of the best parts, I have to go back and listen to it. But, Heidi, I'm gonna tell you, I mean, what a story. I mean, I can say, but the one thing I wanted to also bring up and I'm gonna let these folks listen in on this too, is your daughter was diagnosed with COVID You're still caregiving, your caregiving for her because she has long COVID? And I'm just like, of course she does. Like I'd look at these things Haiti, like you've dealt with ALS, you've dealt with Parkinson's, you've dealt like these are chronic complex illnesses. Like what, like, we don't know what how long COVID is going to last? Because they just said they just named it long, because they're like, we know it's gonna be a long time. But we don't know how long. But tell me what that's been like and how that's been different. Because this is a different, definitely a different dynamic. This is mother daughter. And so you've had parents, you've had spouse you've had, so go ahead.
Unknown:Yeah, yes, no, it's, so we're in the thick of it, which is, you know, very different for me in terms of talking about it, because I don't fully understand it. We don't know what the prognosis is, because people know so little about long haul COVID. And we have no idea what the future looks like. So this is very, this is very different. I will tell you, I'll go into the story just a little bit, because I find it fascinating. But I'll tell you probably the nugget of all of this, it from my perspective, being a caregiver to an invisible illness is a heck of a lot different than being a caregiver to a physical illness meaning just for how you deal with it. You know, it was it was clear Curtis had ALS, he was being paralyzed bit by bit by bit, right that with long COVID, which in Ava's case, so this is my middle daughter, I have three girls, and then a little guy. And this is my middle daughter. And she was diagnosed with COVID in Labor Day weekend of 2022. So we're just going to come up on two years. And another she had a manager up, yes. So she'll be 17. She'll be 17 in a couple of days. So she was 15 at the time. And, you know, in looking back on it, that actual COVID died. The original COVID was was COVID. She was definitely sick. There's no doubt about that. But she's a one, she does many things. And one of the things she does is she's an ice hockey player. And she once she recovered from COVID, she went and had a tournament up in upstate New York that I brought her to and unfortunately, she sustained a terrible hit and had a concussion. And so her story is complicated, because she ended up missing a lot of school based on that concussion, it was really a bad one. And then she ended up being diagnosed with post concussion syndrome. And so that was where we were going for quite a while. Then they found a mass on her thyroid, which thank God was benign, but we went through that whole thing of having a you know, possible cancer. And then it ended up that basically where we were being treated said okay, it's it's no longer post concussion syndrome you have recovered from that the thyroid is not affecting the hormones or anything like that. So you need to go back to square one. And so we ended up getting a referral to an infectious disease specialist. This is now December of 23. So this is 15 months. Oh my not feeling feeling well, actually feeling very sick. And I could talk a little bit about symptoms later but and within a half an hour at the Lon COVID clinic at our local children's hospital in Hartford, Connecticut. They said this is classic. This is longhaul COVID. And, and it's associations which means essentially she also has a pots which is it's essentially a disorder of your autonomic nervous system. So that's that's essentially what she's struggling with right now. And there's there's there's no cure, there's no magic pill. There's there's time and like we all know, we don't know enough about COVID itself, we don't know, you know, is it actually still in her? Is it the inflammation that it creates that then creates all these symptoms? Is it just the pots is it she also has post exertional malaise, you know, so it's it's very confusing. And as a caregiver, I mean, I can't even imagine her, I can't even imagine how she feels, even though we are very open and we do talk a lot. I can't imagine being in her in her body. As a caregiver, it's, it's extremely difficult because, you know, in today's day and age with, with mental health being front and center, which it should be, which number one should be, but you know, the last year and a half of going to doctors being pushed from specialist to specialist, a specialist, and there's always this underlying question of, and I believe in medication, I want to be very clear, I believe in medication for the right reasons, but I've been asked, or told, just put her on an antidepressant. And it's, there's no just there, you know, we need to find the cause we need to figure this out. And so as a caregiver who is looking out for her daughter, it's really hard when you can't see that broken arm or, or you know, the body that won't work. And that's, that's been I've learned a lot about, about that. And from that, and it's, it's very difficult. When there was that point in time where they were trying to figure out if her maths on her thyroid was cancerous, people treated her very differently, because it was something you could get your head around. And then when it was not when it was benign, think thank goodness, then it kind of went back to Okay, so just you know, get back to it, get back to school, get back to your sports. And she she she just is coming off a med leave Actually, today. She's going back to school for the first time since the beginning of April. Because the fatigue and the essentially she has her Her heart rate has heart rate variability there. There's all these confusing things to talk about that I won't get into. But it's it's hard. It's hard. And I'm struggling. I mean, this is a this is a tough caregiving journey for sure.
Natalie:Wow. That is and it's so different. You know, I think, you know, you're if you think about it, you were in your 20s with Curtis, and you're in a different place and you in a different place in your life. You know what I mean? Like you are, you know, you're young and you haven't have as much lived experience and now you have other children you've got well, spouse and now but now you do have a partner you have a partner in this with with your husband, to be able to kind of walk through that together. And but you're still the mama bear the mama bears are always the mama bear. They're I don't there's no daddy bears. There's mama bears and the mama bears always take the lead and the daddy bears are just like, okay, Mama Bear, tell me what to do. And they do that. But then no, there's a reason we have maternal instincts. Even with me with no children. I'm like a walk around with my Beagle. Like, she's a small child. And she's seven. But I think I think that would be very different. And what have you taken from your past experiences in caregiving, and try to apply now?
Unknown:I have taken I think that my most important role as a caregiver to Curtis was to, in his case, help him lead his best life every day, knowing that it was a short short time, even though when we were in the moment we were living and believing as though he would live forever. Right. It's not much different in Ava's case, I know it's this is not a death sentence for her thank God but it is a chronic issue and she very well could have it for the rest of her life. I hope not. But whatever way it ends up going. I think my role my main role number one is to be your advocate, which is also we haven't spoken anything about that but that is probably mean I was Curtis's advocate 100% With with everything, you know doctors, all the you know PT that would come in or the OT at first before he got to that all that sort of thing. And I am 100% Eva's advocate. But I'm also in a daily on a daily basis, trying my hardest to help her live, live her best life every day, even though it looks very, very different than it was she was a high high achieving academic kid, three sports. And this has completely changed her life. I hope temporarily but we don't know and I'm just I'm trying to to help her. Adapt To help her always see that the brightness of every day, even the days when there is very little brightness to find. And I, I I'm not sure I don't know, I don't know what what kind of caregiver, I would be to Eva if I hadn't gone through when I went with Kurt. And it also when you do care for somebody with a terminal illness, and then they ended up passing, everything else seems manageable. So, you know, this, this is awful. This is awful for her. It's, it's affected our entire family unit. But there there is, there is a lot of hope. And I always, you know, sometimes maybe too much. I always say it could be a lot worse. And it could, it could, because you really are eight, because I know it can that well. That's exactly right. And I think that that's a big thing, too, that, again, when you live through something like that. I know it's I know, it's it's trite to say but it is so true. Don't sweat the small stuff, because it really is small and we are human, we are human, we are always going to do that. And I do it all the time. I mean, maybe for the first year after Curtis died, I didn't but I certainly went right back into doing it. But
Natalie:I think we were human. We all do we and sometimes I'll tell you how to I forget the things that got me through some of the hardest times. And I think back on it even right now, as you say that, like hey, it kind of went back. It's easy for those old habits and thought patterns to creep right back in, like, I'm gonna do it different, and I'm not going to work as much. And then what do I do Jay? I work as much work as much. And so, you know, I go back to habits that that are known, unfamiliar, and that have suited me and served me in the past but really didn't serve me. And that's a hard behavior change in adults, it's hard to saying,
Unknown:Oh, it's so true. And I can 100% understand that and relate to that. Because at the very, very beginning of Kurt's illness when we weren't sure what was going on. I was I was increasing my hours on the tennis court. I was you know, traveling all over with the boys. The boys tennis team coaching them, because I was like, the busier I stay. I don't have to deal. And I was definitely doing that with Ava at the beginning of all of this. I was like, you know, I have a full time job. I also do tutoring on the side. I mean, I have a million balls in the air. I like it that way. I've created that. Yeah. But at the very beginning, that's what I was doing. Because it was like if I can just stay busy. I don't have to think about this horrible thing that's happening. And then it just kind of I don't I don't know when it changes. I don't know exactly when it changed with Kurt. I don't know exactly when it changed with Ava. But it did and it from that moment on, you know, yes, I'm still working. Yes, I'm still doing all my other things. But but she is my number one priority. And we'll figure this out. I have hope I have hope. So Heidi, if I ask you what you've spent more time on over the years, what would you say? Would you say a why mentality or an I got this? Oh, definitely. I got this one I thought Yeah, yeah, yeah. And I think that's an eight. I really do. I think I always was like that. I think Curtis instilled that in me in also and that may be increased it for the rest for as I've journeyed through life since him or with him, I should say not sense Him with him. But yeah, I mean, something comes up and it's always like, I mean, I'm a problem solver. I think that comes with it too. Right? Like that's just there is always a solution. It might not be the greatest solution, but there's always a solution. Hmm, I definitely think you're at I got this. And I just am amazed at all
Natalie:you got. I'm like she's got it. Got it together. You know, Heidi, thank you so much for being with us. I feel so blessed. I needed this this morning even with my blinky lights and JJ got to talk the whole time sure everybody just loved it. But no but all seriousness Heidi, we love you. You are definitely a sister in care and an inspiration and someone that have quite the words of wisdom that I will take with me and apply to my own life because it care never stops and it started with 55 Stuffed animals that's what I loved. I'd like it really was It was started with 55 Stuffed animals that slept in my bed. It just goes to show who you are
Unknown:thank you so much you so much thank you again thank you guys so much. You guys are so wonderful and thank you for you know we're if we have to live through this stuff. I think we need to share it and we need to help others through it because if not what in the world is the purpose? Oh
Natalie:I'm gonna leave it right there guys. Thanks so much for listening to after the confessions until the next time. Thanks.
Unknown:Well, friends, that's a wrap for this week's after the confession. Thanks so much for subscribing. It's your support that makes this podcast possible. And don't forget to visit our website to sign up for our monthly newsletter. Sign up for the free sisterhood advantage discount club. And of course connect with us on Facebook, Instagram, LinkedIn, tik, Tok, Twitter, and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again, till then take care of you