Ep 1: Caregiving, coffee, and maybe too much information: an introduction to Caffeinated Caregivers

[00:00:00] Erica: And some people might be wondering why we’re so accustomed to hospital coffee. 

[00:00:07] Alyssa: Or yeah, why we’re doing this at all. It’s not just to talk about coffee. Fun fact, we did not start this podcast to talk about coffee, although it will come up. A lot, I’m sure.

[00:00:28] Alyssa: Welcome to Caffeinated Caregivers, where we have coffee dates and conversations about all things related to caregiving. 

[00:00:34] Erica: Hello, hello. This is Erica Stearns and Alyssa Nutile. We are the two parts of Caffeinated Caregivers. I don’t think we’ve decided if one is the cream and one is the sugar. Maybe we’re equal parts both.

[00:00:50] Alyssa: are you nicer than me? I feel like you are in a lot of ways. 

[00:00:54] Erica: I don’t think my husband would always agree with that though. 

[00:00:57] Alyssa: Maybe more approachable. You can be the sugar, 

[00:00:59] Erica: I’ll be the cream. Okay, okay. Sometimes I might want to trade off if that’s okay. Totally 

[00:01:05] Alyssa: fine. Alright, Erica, tell me, what do you have today?

[00:01:09] What’s fueling you today? Do you have coffee with you right now? 

[00:01:13] Erica: I already had my large cup of coffee. It was Folger’s classic morning roast with Kroger brand French vanilla cream, but in preparation for our recording today, our first ever inaugural recording. I am drinking tea. I’m drinking awake English breakfast.

[00:01:37] So if I start having heart palpitations over here, you know, just roll with it. We’re on the same 

[00:01:43] Alyssa: page. I have, oh, I think it’s tops. We have all different grocery stores in Pennsylvania than I think you guys did in Illinois. We’ll get to that, why I know all about your grocery stores in Illinois. Um, But here we don’t have Kroger, we have Tops.

[00:02:01] So I have Tops brand hazelnut coffee, but it’s cold brew that I made at home just with like your most basic coffee grounds. And then you can get Starbucks. cold brew like caramel macchiato version. And if you pour a little splash of that in with like, I don’t know, 12 ounces or so of cold brew, it’s very delicious.

[00:02:26] Like, like four to one ratio. Maybe I don’t like my coffee. Like super sweet. Um, but also the caramel macchiato mix already has coffee in it. So if I put a lot more than that, then, uh, we’re back to the heart palpitation situation over here too. 

[00:02:41] Erica: Oh, that sounds really good. We’re, we’re fancy coffee drinkers as everyone can tell.

[00:02:46] There’s something about good old drip coffee and the store brand creamer. It’s a built in system in my routine, cannot stray from it too far. Randy will shake things up and make me a fancy coffee with, like, freshly ground beans 

[00:03:01] Alyssa: and… Do you guys grind your own beans? 

[00:03:04] Erica: We, we’re bean grinders over here.

[00:03:10] If we know that we really want to make each other’s day better, then we’ll go the extra mile and we will do the freshly ground coffee in the French press. We will warm up some cream and froth the cream and add honey and some cinnamon, like we’ll go the extra mile and it just, it sets a really nice tone for the day.

[00:03:31] It’s like, it’s kind of our love language. We joke about that. I still drink Folgers every day though. 

[00:03:38] Alyssa: Half of the, like, enjoyment of drinking coffee though is the experience of drinking coffee, I feel like. So you gotta have like your fancy coffee cup, you know, whatever your favorite mug is. whatever your process is of like putting it together in the morning and then like having it in the space that you like to drink it like that to me is as important at this point in my life as like the actual caffeine content of it i’m like it’s like you said it’s part of my routine it my morning does not feel complete without it in the way 

[00:04:08] Erica: that I like to do it.

[00:04:10] It’s kind of ritualistic for us too, and it’s all centered around caffeine, which I think is kind of funny because we absolutely need that to get through our days. I respect that there are many people probably listening to this who may not feel that way. Unfortunately, I am not one of you. I will always need, want, crave a caffeinated beverage.

[00:04:35] Not just once, but throughout the day. Um, I don’t know what that says about me. I’m addicted to it. There you go. I said it. Put it out there for the universe. 

[00:04:44] Alyssa: I mean, I, I literally have a physical addiction to caffeine. Uh, one time about a year ago, I accidentally bought decaf coffee and I didn’t realize it until I don’t, it was probably like four or five days because you know, it was like in the throes of like being busy with all kinds of other stuff.

[00:05:03] And I was nauseous every day, like so like on the verge of throwing up like sick. And I was like, I know I’m not pregnant. But I don’t remember like ever feeling this sick and nauseous for anything else. And it turns out it’s because I was not getting caffeine. Oh my gosh. Yeah. I mean, I literally have a physical addiction to caffeine, but you know, like you said, it’s part of the life.

[00:05:27] It’s part of the life. But okay, Erica, I do love talking about coffee and we can talk about coffee for, oh 

[00:05:34] Erica: wait, before you move on, I just want to give a special shout out to the hospital coffee too. Oh yeah. We can talk all day about our fancy coffee drinks, but. When it comes down to it, I don’t care what form it comes in, I will drink the hospital coffee.

[00:05:51] With no sugar or creamer, I have learned that in times of desperation, I really don’t care what it tastes like so long as it enters my body and 

[00:05:59] Alyssa: fuels me. Oh, a thousand percent. I don’t even, I mean, uh, there’s times where it’s like the temperature does not even matter that much. It’s like you just need the caffeine.

[00:06:10] however you can get it. 

[00:06:12] Erica: And some people might be wondering why we’re so accustomed to hospital coffee. 

[00:06:19] Alyssa: Or yeah, why we’re doing this at all. It’s not just to talk about coffee. Fun fact, we did not start this podcast to talk about coffee, although it will come up a lot, I’m sure. Okay, Erica, why are we doing this then? Why are we here?

[00:06:33] Erica: So we are two parts of caffeinated caregivers, but what is caffeinated caregivers? Some people might be wondering that. I highly doubt it, because a lot of you are probably coming here from our Instagram page, but what you may not know is that this entire concept started with the idea of creating a podcast specifically for caregivers like ourselves, caffeinated or uncaffeinated.

[00:07:02] But we both came to this with an understanding that caffeine would be involved for us. So. 

[00:07:09] Alyssa: Yeah. Oh boy. So I feel like following up on what you just said, most of you probably are here from our Instagram and we’re like, Oh yeah, we’ll start an Instagram to, you know, like just have a place to talk to people from our podcast because our podcast was supposed to be the main thing.

[00:07:26] 10 months ago. Not a thing that we were doing right now. But you know what? Like, we’re both caregivers, so that’s where we are with this. So I’m Alyssa Nutile. I am a mom to two kids. We have an interabled family. My oldest child is not disabled. He’s seven. He’s very cute. He’s very busy, very stubborn, and very sassy.

[00:07:51] And then his younger sister, Gemma, is so disabled, and she is also all of those things. She has the exact same personality as him, and they keep us very busy, very busy. So I’m not going to get into Gemma’s whole diagnosis story today, but the short version is she has a progressive metabolic disease that has a lot of neurological effects, and she has a life limiting prognosis, you know, like she’s not going to be here with us forever.

[00:08:23] And she’s nonverbal. But I always tell people that like, she is nonverbal. She’s not like non communicative. Let’s just say like, wow, however, she’s feeling happy, sad, grouchy, annoyed. You will know about it. She’s very good, very good at like telling us how she’s feeling on any given day. As much as I love her, this isn’t really a space to talk about her.

[00:08:50] This is a space to talk about the things that like I have experienced as her mom. And like more or less her default caregiver, right? Like that’s the thing that usually falls to moms. Like all the ways that that’s impacted and changed my life and the life of people like me. So Erica, why don’t you tell us a little bit about you?

[00:09:10] Erica: So my name is Erica Stearns. I’m the mom and caregiver of my two children, Margot and Caratacus, ages seven and five. They were both born with a rare genetic disorder. Um, we don’t know really many other people with this genetic disorder. In fact, it was discovered because both of my kids were born with the same things.

[00:09:38] And what that kind of encompasses is a constellation of medical complexities, disabilities that range from physicals, they’re non ambulatory, neurological, they have seizure disorder, that’s pretty rare, they’re nonverbal, there’s cognitive delays. There’s a long list of additional diagnoses that kind of fall under that rare genetic disorder.

[00:10:03] And because they were the first two born with this, we’ve never really had a roadmap on what to expect. Based on the severity of their conditions, we’ve been told that we may outlive them. But the amazing thing about our kids is that they’re constantly surprising us. So just like Gemma. Even though they’re non verbal and non ambulatory, they communicate with their body, with their eyes, with their sounds.

[00:10:35] They are over the top with their personalities. Unlike your family, they cannot be more different. Margot is my manager. She’s very serious and professional and skeptical of a lot of things and people, especially strangers. Caratacus is a showboat. He is the attention hog. He has never met a stranger. So they definitely keep us busy.

[00:11:03] Um, not just with the care, but just what their personality is and making sure that the things we’re doing as a family. you know, are things that both of them enjoy since they are so different. Caratacus would love to go out into the world and meet everyone. Margot prefers to stay home, so we have to find like a good balance for both of them.

[00:11:21] But to what you stated, this is not a podcast about our children. Our children’s lives have certainly transformed our own. And they have shaped the people who are sitting here at these microphones today. We may certainly bring up experiences that we’ve had that involve our children. We’re not here to talk about them, their disabilities, their medical conditions.

[00:11:49] We’re not here to give medical advice. We’re not here to even speak on behalf of all caregivers and parents. We’re here because we want to [00:12:00] create a space for our fellow caregivers where we can just laugh, Mostly laugh, when we’re not crying, as we navigate this. 

[00:12:10] Alyssa: Hopefully laugh, there’s some laughing. 

[00:12:15] Erica: And most importantly, advocate for better.

[00:12:20] So, Alyssa, something that most of our listeners may not know, is that you and I both had caregiving experiences prior to becoming parents. We were both recipients of care, unique medical disability related care, from our own parents. When you and I were growing up, we never referred to our parents as caregivers, but understanding this term now and its usefulness, it’s definitely given me a better understanding about the systems and challenges my parents faced as they were raising me and helping me to live with my medical complexities.

[00:13:05] So to touch on that, just for a moment, you are listening to two people who have navigated childhood with disabilities. It has certainly lent to a unique perspective in our own experiences with parenthood while raising children with medical complexities and disabilities. 

[00:13:26] Alyssa: Absolutely. And sort of just to touch on the idea of having I don’t know if we want to call it a label, but maybe a description of a certain like aspect of our life right for caregiving.

[00:13:39] I can say personally that not only like did I not use the term disabled or disability or anything like that, I don’t know that I really heard anyone else. use that terminology while I was growing up. My entire adolescence was pretty much defined by the fact that I have an orthopedic disease and that my left hip is Not particularly functional and that resulted in a lot of surgeries and a lot of pain and also a very pronounced limp all throughout middle school and high school.

[00:14:14] Um, and I actually am not the only person in my family to have significant like hip problems. My aunt had a worse condition than I did. Um, and she walked with a cane her entire adult life and she had, you know, lots of, um, limitations from that, you know, But I never once I’ve heard her use the word disability and I also saw her struggling through a lot of places and spaces that were inaccessible and for her the expectation was more or less that they would be inaccessible and she would just have to deal with it.

[00:14:48] As best she could, so looking back now, it would have been helpful to have some sort of terminology around that just generally because I was not very good at advocating for myself, not having any of that language like I was just like, well, things hurt and it’s hard to go upstairs, but like, I don’t have a broken bone, so I guess I can’t use the elevator like that kind of stuff, you know, just like silly things that now looking back, you’re like, well, of course, You know, that doesn’t make sense, but like to a 12 year old trying to navigate this without any sort of framework makes you appreciate having language to describe the experience you’re having and also the help that you need to get, 

[00:15:29] Erica: Right? Absolutely. I can relate to that completely. My experience is kind of the opposite of yours. So I was born with a rare at the time congenital birth defect that involved my respiratory system and my digestive system and to this day my vocal cords are still mostly paralyzed. I’ve got like half a little vocal cord that can.

[00:15:57] which explains why I do have a raspier voice. I’m used to people asking me if I’m sick. My entire life I’ve been asked that, except for when I was actually mute. So I spent most of my younger childhood years, um, using a mixture of ASL and Trying to communicate with adults by mouthing the words because the sound actually wasn’t coming out.

[00:16:26] I had a tracheotomy for 15 years, a g tube for about the first five. I had it for seven years, but I think I only actually used it for five years. And then I’ve had a lot of surgeries. I still live with some pain and some discomfort and some GI issues. And now an autoimmune disease to just top it off. But I, I also experienced something really unique in that I was visibly disabled for most of my youth, and then midway as a teenager when my, when I was decannulated, I became less visibly disabled.

[00:17:13] And that was definitely a unique experience. But just to touch on what you said, I also did not identify as disabled. Unlike your family where it wasn’t ever mentioned, in my family it was a word that was like shunned. My mom was like, she is not disabled. I was referred to as special. Yeah, there’s a lot of feelings about that.

[00:17:43] More than anything, as an adult, I realized it gave me a complex because While I was definitely different from other people, the way that I felt othered and the experiences I had as a disabled child didn’t feel special. It didn’t feel that way, so it was very confusing to be told that I was just special.

[00:18:04] I think had I had words like disabled and had I had a community of other disabled children, I think it could have really given me a sense of pride and camaraderie through my youth, that I just really lacked. Which is why when I discovered the word caregiver, it was a word that I began to lean in on because I saw that it, just like the word disabled, just like using that word when identifying myself.

[00:18:34] It gave me access to a community that I didn’t have before. And that’s really why we came to this space a little over a year ago now. We actually bonded over some shared frustration that myself and you and probably many others in our community have, which is the hmm.

[00:19:01] So yeah, do you want to talk about that? Are we ready to go there, Alyssa? Oh my gosh, 

[00:19:05] Alyssa: yes, I am ready to go there.

[00:19:06] Erica: Here’s the origin story of how this friendship began. Oh my 

[00:19:12] Alyssa: god, are we gonna go, do you want to go all the way back to the beginning? Let’s go way, way back. Yeah, 

[00:19:16] Erica: let’s do it. The way, way back. They deserve to know. 

[00:19:19] Alyssa: So Erica and I have sort of been like orbiting each other for a long time. I love that. That’s a good way to put it, right? So my daughter Gemma is almost four and a half. I think I first got into contact with Erica, maybe like four ish years ago, but Erica and I had lived in the same tiny little area of Southern Illinois, which by the way, if you’re going to ask, no, it is not close to Chicago, it is like five and a half hours away from Chicago.

[00:19:52] The closest major city is St. Louis, which is like two ish hours away and also not in the same state. So that should give you some perspective for like how tiny and rural this area is. Thank you. Thank 

[00:20:04] Erica: you for setting the stage. I appreciate it. You’re, you’re welcome. 

[00:20:08] Alyssa: You’re welcome. We lived in the same area for four and a half years in this tiny little space with mutual friends, which is how we met, like how we met each other later.

[00:20:18] We did not meet each other at all while we lived in the same area at any point. Because while we both lived in this area, neither one of us had any children at all, actually. But anyway, we have a mutual friend. And so after we did not get Gemma’s diagnosis, prenatally, but we did know that there were things, you know, going on and that she was going to have some disabilities.

[00:20:42] We just didn’t know exactly what they were going to be at the time. A mutual friend sent me to, you had a Facebook page at the time. I reached out through there and I think maybe we like talked a little bit, but also we both had very small disabled children and I think at the time we were like going through it.

[00:21:05] Our kids do not have the same genetic disorder, but Gemma also has a rare disease and I think they they present very similarly and they have very similar like levels of care and like types of care that they need. And so the first year with Gemma and, uh, Cary would have been, he’s only, what, a few months older than Gemma, I think?

[00:21:26] Yeah. Mm hmm. We were all going through it. Like, it was not a good year for any of us and our kids that first couple of years or whatever. So… We first talked then, and then we probably became like Instagram friends, I would guess around there, we were just like around, we didn’t really connect again until I heard your episode on a different podcast talking about how, well, basically your experience of being a person who both received care and gave care as a disabled parent to a disabled child, and what that experience was like, and I was like, Oh my God, yeah.

[00:22:06] I have been waiting for someone to talk about this. I need to hear all the things about this. And then I was like, wait a second. I know this lady. So I messaged you again then. And I think kind of after that, like we were like sort of in like regular contact. But then another thing that makes, I think, our situation a little bit different than a lot of parents and caregivers.

[00:22:29] in our position is that both of us work not outside of the home. We both work at home, but we work outside of our family, like for other organizations and for other groups. Um, we have a professional career, which has not been easy. And I know is. inaccessible for like most caregivers. And that was actually kind of what brought us together this last time around was like, not necessarily that people have to work and be outside of the home or, you know, work outside of their families or whatever, but that they don’t have the option most of the time because they don’t have the resources to be able to do that even if they wanted to.

[00:23:05] And we’re like, that’s so unfair. How do we fix this problem? And not easily because we’re just two people. 

[00:23:11] Erica: Ambitious people though. Yeah. Right. 

[00:23:15] Alyssa: From my perspective, like that was kind of where this started. What about you? Did I miss any details? 

[00:23:21] Erica: No, that’s great. I would only add that Even though we didn’t do a whole lot of regular communicating, your content was content that I always paid attention to.

[00:23:33] Alyssa’s always been very conscientious of how she narrates life as a caregiver and parent of Gemma and Harry. When I would read your work, it was like words were finally being the experiences I had. Maybe I had tried to define it before, but whenever I read your work, I just found myself shaking my head and being like, yep.

[00:23:57] That explains it perfectly and eloquently, might I add. You’re very eloquent with your writing. 

[00:24:04] Alyssa: Better in writing than in speaking, 

[00:24:06] Erica: sorry guys. Same, same. Yeah, this is, you’re going to have two different versions of us. The live and the written, it’s very different, but yeah, you felt like a friend. Even though we didn’t do a lot of super interpersonal connecting.

[00:24:24] But then when we did start connecting about this shared frustration about the lack of resources and support for the caregivers who do need to work and get out of the house to support their families, it was like we had been talking for years. That made this experience So comfortable because I did feel like I had a foundational understanding of who you were, your judgment, your morals, your overall demeanor online, very much aligned with my own.

[00:24:58] And so I came into this partnership with you with a lot of respect, just out the gate, so. Here we are. Uh, funny enough, when we started talking about this, Alyssa brought up how passionate she was about creating caregiver memes. And, you know, that was another frustration. There just wasn’t a lot of fun, humorous, content out there that we could relate to.

[00:25:28] Some of it was applicable, but it was never specifically for us. And so that was another thing that we kind of bonded over was wanting to create a fun, wholesome, positive, welcoming, humorous space to really safely laugh and like I said, maybe cry, shed a few tears over our experiences, the challenges, the victories, all the things that we face as we navigate systems of care as caregivers of medically complex and disabled children.

[00:26:04] That’s 

[00:26:04] Alyssa: why we’re here. And I. First of all, thank you for all those nice things that you said about me. I’m really bad at receiving compliments, but I’m working on it. The feeling, all of the feelings are very mutual, like so much mutual respect between the two of us. And I also had followed your work for a while.

[00:26:19] And you have a different podcast that you had produced before this. Oh, I guess we should probably say this. Neither one of us are new to the podcasting world. So I have worked as a podcast producer for the last. three and a half years now. So podcasting is literally my job. But usually I’m making it and producing work for other people, not myself.

[00:26:41] Um, and Erica, how long have you, how long ago did you start Atypical Truth?

[00:26:47] Erica: I started Atypical Truth in 2020. I came to this with a musical recording background, so there were some things I was very familiar with, but flying solo in a podcast is a totally different experience. So it’s interesting that we’re both bringing our unique experiences professionally to the table here.

[00:27:09] Alyssa: And I think this sort of like origin story for how we met and how we’ve interacted And just sort of like supported each other is really pretty much all of the things that we want to bring into this community as well. Like this is a very, I shouldn’t say it is, but it certainly can be a very, very lonely experience.

[00:27:30] Um, and alienating and having someone in your corner. That understands what you’ve gone through, having people with different perspectives, with different backgrounds, treating each other with mutual respect, being willing to have conversations, being willing to listen in those conversations, and then being able to share resources from all over the country because This is a thing that we’ll discuss as we talk more about nursing, but each state approaches their own support for caregiving in a very different manner.

[00:28:04] And so we need people from all over. We need people with all their different experiences to be able to get resources to people who need them. Because one person cannot. source all of this information themselves. Like it’s just impossible. People have tried and varying degrees of success, but I don’t think anybody has done it like exceptionally well, because I don’t think it’s possible to be done exceptionally well by one person.

[00:28:27] Um, and that’s not a fault of ours. That is a fault of a very chaotic and unorganized and kind of uninterested in us. system. So we’ve been using this term a lot and we are not going to sit here and define all of caregiving for you today and exactly why we’re going to use that term. We will dedicate an entire episode to this and we are also working on an essay because we did not just choose this term randomly.

[00:28:57] And we did not choose this term. I mean, actually, to be fair, I did kind of choose this term because parents of a medically complex child is just a lot to say every single time that I say something. A medically complex and disabled child. That’s a lot to map. That’s a whole thing. So caregivers is a lot shorter, but there was a lot of thought and a lot of research and a lot of effort put into picking this term.

[00:29:22] When we say that term generally, just like out in public, one of the biggest reasons is because Not everyone who is a caregiver is a parent of a medically complex or disabled child. 

[00:29:35] Erica: Yeah, that’s true. And we also did not create this term as a researcher and as a professional advocate and supporter of caregivers of children with medical complexities.

[00:29:49] Caregiver is a term that I was very quickly introduced to at the beginning of my research and career. is a neutral term. It was an inclusive and all encompassing term. It’s definitely a universal term. In my opinion, it’s a term that creates access for our peers who are doing similar levels of care with their loved ones.

[00:30:15] It allows us to find each other easier, to connect over a shared experience. When I use the word caregiver, it paints a picture of what I do beyond the typical scope of parenting. It’s also a word, as I mentioned before, that comes up a lot in advocacy, which is again what we do in the content we create.

[00:30:40] Another thing we happen to bond over was the fact that we do a lot of advocating for our children, for ourselves. It’s kind of become a form of, dare I say, self care. 

[00:30:55] Alyssa: Yeah, so we should probably put a disclaimer here. We also did not, uh, invent the concept of advocacy as self care. There has been a lot of research and a fair number of like academic articles published on the concept of advocacy as self care in a variety of fields, right?

[00:31:15] So not specifically for disabled people, not specifically for caregivers, all, all kinds of advocacy as self care. However, I think us embracing that here has been huge and it kind of crosses over with that idea of like, okay, why? Why do we need another term? Why do we like the term caregiver or caregiving instead of just like parent or parent medically complex child?

[00:31:39] And I’ve thought about this a lot, but I do have an inter abled family and my, like I said, my older son is not disabled. So I experienced parenting, you know, quote unquote, in the like typical format prior to Gemma and I want to be careful how I word this here. I don’t want to say that like I am the perfect parent per se.

[00:32:01] I don’t think any of us think that we are perfect parents. However, I would say like broadly, I don’t need a lot of help parenting Harry, right? Like, or even really parenting Gemma. Like we’re all just kind of like muddling through that together. Like, I understand that we have to make hard decisions and like, you know, all sorts of things like that, figure out education and like all those sort of more like parenting type things.

[00:32:25] I don’t need external support a ton of it for that. I do need external support for her day to day care, like administering epilepsy medicine, like trying to decide like what her medical condition is any given day, making sure she gets all of her therapies, going to school with her because she goes to preschool at her local public school, and she has to have a nurse with her all the time because she can’t even be there by herself, and I can’t do that for her, right?

[00:32:55] Like, mm hmm. All of these things that, in my view, are not under the scope of parenting. It’s just been a very different experience, the parenting aspect versus, like, the actual navigating caregiving aspect. And coming to the understanding that those are different things. And that while I may not feel like I need, quote unquote, like parenting help, I do need help caregiving and being able to ask for that and put that out into the world and request it for myself.

[00:33:31] has been hugely healing and helpful in this whole journey. And I think that’s where we’re getting to in the advocacy as self care. Like, self care is a word that has so much baggage, right? But, being able to ask for when you’re literally drowning is absolutely taking care of yourself. 

[00:33:49] Erica: Yeah, I couldn’t agree more.

[00:33:52] This work is very personal. And we’re two very sensitive people. We should just probably throw that out there. So we came to this space with all of these experiences, the experiences we had as disabled children, the experiences we have as disabled adults, the experiences we’ve gained as parents and caregivers of our children.

[00:34:17] disabled and not disabled. And so when we came to this space, this conversation, this decision to create this community, we did it with a lot of intention. We were incredibly conscientious of the material, the research, everything that we produced and published. It’s important to us that this space is welcoming, that this space is offering resources, information, validation, and a shared sense of belonging in this caregiving experience.

[00:34:57] So, what can you expect from the podcast? Well, we can’t give you memes like we do on Instagram, but I think there will be a lot of meme worthy material. Just gonna throw that out there. I can already tell. We’re going to cover a wide range of topics. that relate to the overall experiences that us caregivers have.

[00:35:21] We’re going to bring on a lot of different guests that range from fellow caregivers, our peers in the disability community, some special ones that are also caregivers and disabled adults like ourselves. We’re going to be bringing a lot of different perspectives to the forefront. And while we’re doing that, We want to make sure that we’re still hearing from you guys.

[00:35:43] We want ways to bring your stories to the forefront of this conversation. 

[00:35:48] Alyssa: One other thing, this whole project has been very collaborative, from the memes that we’ve made coming from our community, to all the research that we share. I think we try to be really conscientious. of making clear that everything that we create is not necessarily our work.

[00:36:06] And when it’s not our work, it’s very clear. And we make sure that we cite our sources and we are going to keep doing that. And maybe we will also have guests. that have created some of this work because this is a place where we are sharing things with you, not exclusively just creating things with you because there’s already a ton of good work out there from other caregivers, from other disabled adults, from everybody.

[00:36:30] Um, and if you have followed along on our Instagram, some of our informational posts, you’ll have seen that already and you’ll, you’ll continue to see it. Mm 

[00:36:39] Erica: hmm. And mind you all, It is just us. There is no one else helping. We’re fine with that now, but if we get off schedule, if we lack a consistent schedule, it has a lot to do with the fact that first and foremost, we are parents and caregivers.

[00:36:58] Family first isdefinitely the motto 

[00:37:01] Alyssa: here. Yeah, I would also like to note that not only is it just the two of us, this is currently a self funded project. There is no money behind this. We’re not making money off of this. Nobody else is like financially supporting this project. It’s just me and Erica doing this.

[00:37:19] I mean, you know, never say never, like, for now and for the foreseeable future, it is just us. doing this thing, 

[00:37:26] Erica: so. And, and thanks to everyone too, because the engagement that we’ve had, the comments that we receive, the messages, it’s been very clear that you guys appreciate this, and it’s given us a lot of motivation and momentum to move this forward.

[00:37:44] We didn’t expect the Instagram to grow like it did so quickly. We, we definitely had high hopes, but they weren’t that high. Like, do you remember we cracked a beard a thousand followers and then two thousand followers we didn’t even like send a text message to each other, which was kind of funny. I 

[00:38:04] Alyssa: know.

[00:38:05] I think when we first started this, we were like, okay, if we could find a thousand caregivers within a year or so, that would be amazing. And, like, two months later, we had connected with a thousand of you guys. That was incredible. It’s incredible. And our Instagram is really special in the way that I think pretty much everybody there is a caregiver.

[00:38:28] Like, we have heard specifically from so many of you guys. comments from you. We get a lot of messages from you. We try really, really hard to respond to all of them. I’m so sorry if you send us stuff and we didn’t respond. But again, just two of us. And that’s been amazing. And yeah, that’s pretty much the thing keeping us going at this point.

[00:38:46] Yeah, 

[00:38:47] Erica: there’s professionals there too, which I find so exciting that there are professionals, there’s doctors, there’s nutritionists, there’s therapists, there’s a lot of people who are coming to our space. in addition to caregivers who have an investment in the well being of caregivers. And that is equally exciting because the reality is we have a lot on our plates and we cannot do this alone.

[00:39:11] We need the help of the professionals. We need them to see the value and importance of the things that we’re asking for and talking about. Maybe eventually get more people to understand and help us advocate for the things that we need. So that’s exciting to me. As far as our schedule, we hope for this to be at least a monthly occurrence.

[00:39:36] But everything that we are doing here on the podcast, it is going to be related to the conversations we’re having on Instagram. And just so you know, we’re not gonna be on threads and Facebook and Twitter or X, whatever the new name of it is, whatever the name of it is, by the time this airs, um, we are just sticking to Instagram.

[00:39:59] Also going to have things like the blogs that we’ll share, newsletters, if you want to sign up, just kind of recapping what we’ve worked on. So between Instagram and I guess our website, those are the two main places to find us. are also still trying to figure out how we’re going to highlight conversations that are happening with you guys.

[00:40:23] For example, there’s been a lot of really great commentary, um, suggestions, information about how different states do things differently for caregivers. So, You may find that we are bringing that information here live on the podcast, and when we do so, we will try our best to, you know, provide the source of that information when it’s applicable.

[00:40:48] We obviously don’t want to violate anyone’s privacy, so if you’re sending those private messages, you can trust that we’re not going to be sharing that information publicly unless we’ve received your consent. But the stuff that’s kind of shared in our comments, uh, the more public stuff we may share, reference, and provide the source for that information, so.

[00:41:05] Alyssa: Yeah, definitely like general topics of conversation that are coming up, um, and we’ll cycle through some of them. I know Just this last week, we did a poll for the first time about which memes we should do and we ended up doing, oh, what we, like, uh, caregiver relationships, relationships between caregivers and how awesome those are, vital, amazing, all of those words, absolutely, but The second most common, or the second, the runner up, I guess I should say, was sleep, which is not the first time that that has come up for like memes or just topics of conversation, or just a topic for like why we need help because we never get to sleep otherwise.

[00:41:47] So you’ll hear about that. We’ll probably, if I had to guess, I would say we will probably like the um, maybe like recapping that kind of stuff in intros that we do. But it is going to be like very similar. Like all of these things are going to have to work together. Because, as Erica said, we cannot keep up with all of this stuff otherwise.

[00:42:07] And I should say, definitely go to the website, sign up for our newsletter, all of that. You can contact us through there if you would like. I’m not going to promise, though, that if you send us a really long email, we’re going to get back to it within like a week or so. So if you need to get in contact with us quickly, do that on Instagram for sure.

[00:42:25] Mm hmm. 

[00:42:27] Erica: Yeah. 

[00:42:28] Alyssa: Okay. So I feel like we have said a lot here today. Sorry, guys. We’re wordy people, aren’t we? We are. We’re wordy people. It is what it is. So if you hate listening to the way that we talk, um, I cannot promise you anything else. If you do like listening to this podcast, when this episode comes out, first of all, can you give us a review?

[00:42:51] Uh, go to your Apple podcast player or Spotify and just give us a review. Ideally, a five star review. If you hate it, you don’t have to leave us a review. You can just go away if you want. Totally fine with that. But if you do and you want to support us and you want us to keep doing this, go give us a review.

[00:43:08] Again, the whole purpose of this podcast is just to keep building a community and sharing resources and giving us all a place to be able to like speak and connect in a world that is not built for us, not built for our kids. It’s super lonely, super overwhelming at times. This is a place for us to let off steam.

[00:43:26] This is a place for us to like give each other some camaraderie. And that’s That’s like the biggest thing, like, I think we started this because we couldn’t find very many spaces specifically dedicated to this kind of thing. And I’m not saying they don’t exist. I know that they do. But like for us in our sphere, like we couldn’t find a lot that really like talked about the things that we’re talking about in the way that we sort of wanted to approach 

[00:43:50] Erica: it collaboratively too.

[00:43:52] Like not just privately with each other, but with you guys, with our community, 

[00:43:57] Alyssa: right? Yes, totally. Like in a broader sense, like covering, you know, covering more ground basically giving a bigger reach to like the issues that caregivers specifically face. So that’s what this whole thing is for. And then the other aspect to that is setting up a community.

[00:44:15] so that we can share resources to be able to go and advocate for us however we need. So maybe that’s with our doctors, maybe that’s with our kids doctors, maybe that’s with education, you know, your state representatives, all kinds of stuff. There’s tons of advocacy. avenues that you can take. But I do think another big core tenant is setting up the stage to allow people to be able to advocate better broadly.

[00:44:42] Erica: I’m really excited to have these conversations with you, Alyssa, and to our future guests. But I’m also really excited to see these conversations continued online. So come and talk to us over there. We may have a slow response time because when we’re not caregiving, we’re probably trying to get some sleep.

[00:44:59] But, um, we love it, and we’re really excited to have all of you here. 

[00:45:04] Alyssa: Totally. And if you can’t talk to us, talk to each other, because there’s lots of people. Talk to each other! Yes! There’s tons of other caregivers in the comments and like responding to our stories and sharing memes, definitely sharing the memes.

[00:45:19] You can find those people too. I think that’s a big portion of what we want to do to connect you guys to each other. Uh, I don’t want to speak for you, Erica, but I am a huge introvert. So like my ability to talk to people outside of my like very small network is limited on any given day. You know, it’s, it’s hard for me to spend like hours, like wanting to do that.

[00:45:41] Although I try really hard, but yeah, interact with each other too. Like that’s absolutely what we’re. you know, this whole platform is here for. I don’t want to say, like, what we’re here for, like, what the space is, you know. It’s not for us per se. It’s for all of us together, like, as a community. Yeah, 

[00:45:58] Erica: yeah. We appreciate all of you guys coming and listening to us. We’re excited for the episodes that are to come. So with that said, may the force of caffeinated caregiving be with you until next time. No? Too cheesy?

[00:46:17] Alyssa: No, I kind of love it. I love it for the first one. 

[00:46:21] Erica: We should include this like experimental sign off so everyone just knows our struggles.

[00:46:27] Alyssa: You guys, you know we’re cheesy already. We make memes for you. Until next time.

[00:46:34] Erica: Until next time.