Ep 6: The Caregiver Continuum: This Is Why We’re Always Tired

[00:00:00] Alyssa Nutile Can you hear her? 

[00:00:00] Erica Stearns Yeah, I came here. Hi, Gemma. She wants sprinkled lattes. Welcome to Caffeinated Caregivers where we are freezing their butts off trying to stay awake. We’re caffeinated. We’re here to talk about caregiving. Alyssa, what do you have to add to that? 

[00:00:37] Alyssa Nutile I got my eyebrows ripped out today. 

[00:00:39] Erica Stearns They look good. 

[00:00:40] Alyssa Nutile Is that a way that people like describe getting their eyebrows waxed? It’s always how I’ve described getting my eyebrows waxed, because that’s I mean, like, I’m used to it. I can tolerate the discomfort, but, like, it’s not good. I mean, you’re literally getting hot wax poured on you and then have it ripped off your skin. And if you’re like me, you have very big, bushy Eastern European eyebrows. It’s a lot of hair to get ripped off your face. That’s all I’m saying. 

[00:01:05] Erica Stearns Oh, I have not referred to it as that. But that is definitely a very good description of the experience. I actually enjoy the hot wax part. 

[00:01:16] Alyssa Nutile I think I got burned a little bit today. Look at me. Oh, that’s a little hot. Yeah. 

[00:01:20] Erica Stearns That’s a little too hot. 

[00:01:21] Alyssa Nutile Yeah. 

[00:01:23] Erica Stearns They look great, though. 

[00:01:24] Alyssa Nutile Thank you. 

[00:01:24] Erica Stearns I’d give anything for those full brows. 

[00:01:27] Alyssa Nutile Sandy, my, like, 75 year old eyebrow lady, former schoolteacher, aunt of one of my neighbors, because everybody in Erie is related some way or another. So Sandy is gonna do. 

[00:01:41] Erica Stearns Sandy. 

[00:01:42] Alyssa Nutile Shout out to Sandy. It’s pretty much the only self-care activity that I spend money on. Which, again, is funny to me, describing it as self-care. 

[00:01:53] Erica Stearns Describe it as a ripping stuff off your face. 

[00:01:55] Alyssa Nutile Right. Exactly. I understand how ridiculous that sounds, but I don’t really do my hair very often. I almost never wear makeup. I get my haircut once or twice a year, but I get my eyebrows done every eight weeks or so, if I’m lucky. Right. 

[00:02:13] Erica Stearns Yeah, Because, I mean, let’s face it, this was delayed. This was a delayed experience. You told me you’re getting your eyebrows done. Weeks. 

[00:02:20] Alyssa Nutile It was delayed. I had to reschedule. My eyebrows. Yeah. Yeah, I did come in and she goes, Wow, They got really long. And I was like, Listen, Sandy, it’s been a rough ten weeks or so. 

[00:02:30] Erica Stearns But Sandy knows your emotions and how life is going based on how your eyebrows look when you walk in. 

[00:02:38] Alyssa Nutile She does. She really does. 

[00:02:39] Erica Stearns It’s like reading tea leaves, but we’re reading eyebrows. 

[00:02:43] Alyssa Nutile On the tea leaves note. Erica, are you drinking anything today? 

[00:02:47] Erica Stearns Mm hmm. I am. All right. Are you ready for this? 

[00:02:51] Alyssa Nutile Oh, boy. Yeah, We’re going to tea. Did you bring me today? 

[00:02:54] Erica Stearns I didn’t bring you tea. I brought you delicious coffee made by Randy. Oh, we actually had some heavy cream. And so he did the whole French press whipped with sugar and cream. And it’s so good. So good. 

[00:03:11] Alyssa Nutile That’s amazing. 

[00:03:12] Erica Stearns It’s also really strong. And so I had to, like, eat a meal before I came on to record with you, or I’d be bouncing off the walls. Yeah, I feel like it’s so strong. I might grow chest hair or something. I don’t know. How about you? 

[00:03:25] Alyssa Nutile Well, I got myself a fancy little Starbucks drink. It wasn’t that fancy, but part of my eyebrow situation is that once every 8 to 10 weeks, I also get to go out and get myself a fancy, slightly too expensive coffee yet till, you know, make up for the eyebrow paid. So anyway, that’s what I did think it was the sugar cookie, almond milk, iced coffee. 

[00:03:49] Erica Stearns Nice. 

[00:03:50] Alyssa Nutile That’s a pretty good transition into what we’re talking about today, which is tend to do the caregiver continuum. So this is a concept that we’ve sort of been fleshing out for. I mean, I think this concept is probably like as old as the whole idea of caffeinated caregivers. We first published what we were calling the caregiver advocacy Continuum in March, but we kind of we both simplified it and like built it out like we’re just calling it the caregiver continuum now because I think a lot of those pieces are kind of concurrent with the caregiver journey. But anyway, we’re going to map that out for you today. Like what is the caregiver continuum and why does it matter? And the first reason is because we’re going to talk about it all the time. Yeah, we’re going to talk about the caregiver continuum constantly. 

[00:04:43] Erica Stearns It’s going to come up naturally, like and after we explain it, they’ll know why they’ll get it. 

[00:04:48] Alyssa Nutile It’s going to be hugely beneficial to you, too, because knowing where you are on the caregiver continuum at any given point, right? Because as we’ll discuss, like you can move up and down this continuum, it’s like arguably like maybe more of like a circle than like a straight line. Like you can go anywhere in here at any time, but it’s going to be really relevant because where you are in this continuum is going to determine like what you have the capacity for or the energy for what you’re dealing with at any given time. Because if you’re in the middle of a really traumatic month long hospital stay, you’re probably not going to be doing either a lot of self-care or a lot of outward facing legislative advocacy, right? Like that’s just likely not going to be a thing that you’re capable of at that point. So anyway, we’re going to walk you through this. Continuum. We’re going to share some thoughts from some of our followers about where they are on this continuum. 

[00:05:44] Erica Stearns Yeah, and I just want to add also when we first started talking about caffeinated caregivers and the types of topics or issues that we wanted to really dive into. Do you use this term the caregiver continuum? And I remember just really kind of struggling to grasp it. And now that I’m looking at it on paper, someone with speech delays and dyslexia, I’m like, Oh, it’s that word continuum. So I’m like visually struggling with the word, but also the concept. I actually kind of struggled with a little bit until we took time to really define it. And you really took a leadership role in that. Once we had this defined and I remember like reading it as we were about to post some posts back in March, I was like, Oh, it clicked. This is something I’ve been experiencing cyclically. I have been on that journey and it has felt kind of like a loop of the experiences repeating. So yeah, let’s just define it. Go for it. Alyssa, Tell us what the caregiver continuum means. How would you describe it? 

[00:06:54] Alyssa Nutile I mean, it’s really just the process of not even just becoming a caregiver, but just the process that you go through growing and I think going through your life as a caregiver. Right. And we called it the continuum kind of because I think we decided that, like, there really is no like end point, like the endpoint for different people is going to end at different spots depending on what your life is like. So, yeah, I mean, just really loosely advocacy and caregiving and what our life looks like in those moments can look very different for each of us depending on our stage of life. How many of our basic needs are being met and our time and resources available to spend on advocacy and caregiving work honestly. And we are branding this process the caregiver continuum. 

[00:07:42] Erica Stearns So it’s that idea that, like you’re changing based on the needs of your child and the needs of your family. And that change can happen repeatedly. Like you can revisit the theme change. You can revisit the same stage over and over. 

[00:07:59] Alyssa Nutile There’s also an aspect of it that it’s kind of inadvertent, right? Like, you don’t necessarily have to be intentionally doing all of this. So much as we’re noticing a trend that we and many around us have gone through just sort of naturally. 

[00:08:15] Erica Stearns Yeah, it’s usually out of our control. It’s usually in response to circumstances. 

[00:08:20] Alyssa Nutile And another thing that we hear from parents a lot, too, and caregivers, is when their life starts to slow down a little bit, like especially when they’ve been a little bit farther removed from really intense like diagnostic or medical events. You’ll hear stuff like, Oh, well, I feel bad calling myself this or asking for this service or doing that because my life isn’t as crazy as it was, or I don’t need as much help or it’s not as intense as it used to be. And another reason we wanted to talk about the caregiver continuum is because, again, while all of that may be true, most of us are cycling up and down this continuum throughout our medically complex kids lives, which means if you’re not there now, you likely will be again at some point, which means you deserve as much help and support as you can get at any point that you are a caregiver. 

[00:09:15] Erica Stearns Absolutely. And I think Instagram user case, Steph G. Said it really well when they voiced their response to this concept and being all the way. The journey changes when you realize how important and how vital your voice is as a medical parent. And you know, the key stuff. GS Point that idea of figuring out that your voice is vital. That’s also something that I revisit. There’s periods I go through as a caregiver where I don’t really need to use my voice. Things are running smoothly, things are going well, and then something comes up and I think, Oh, I don’t need to say anything. This is just going to work out. And then it doesn’t. And then you realize the power of like speaking up and the power of your role as an advocate for your child. So even that in and of itself is part of that cycle that’s kind of ever changing. And again, inadvertently. Right? It’s very circumstantial at times. What’s happening in your lives, how well the systems are working or not working for you and your child. Which brings me to ask you also, like, why do you feel this is important to talk about? I do. I think it’s important. But why do you feel it’s important? 

[00:10:28] Alyssa Nutile First and foremost, I think it’s really important. If no other reason, just so that you can, like, give yourself a little bit of self comfort. Passion because I sort of mentioned it, but like the way that you’re going to be able to show up and approach certain problems in your life in certain ways is going to depend on where you are on that caregiver continuum, because there are so many points at which you really don’t have the capacity for more than whatever it is that you’re doing at the time, which is often just like surviving. And I think that there can be this expectation, and this is actually a thing that we see with a lot of like newly diagnosed parents, is they’re coming through this like really intense period and they’re like, Oh, but I have to do all these things now. Like, I have to advocate in this particular way. I have to get this particular service. I have to figure out all these things. Am I using the right words? Am I doing this? Am I doing that? And it’s like all of that stuff will come. And I’m not saying that you’re not going to have to put work into some of that like you are, but there is a time and a place for that, and it’s probably not in the absolute most intense portion of your kid’s medical journey. 

[00:11:39] Erica Stearns Mm hmm. Oh, yeah, definitely. I have to agree with that. I think that this is important, and I think the reason I want to talk about it has a lot to do with this concept of not having a path. Not having a playbook. We’ve mentioned that before. And I know as parents, especially new parents, what is the first thing you do? You learn about that book. What’s No. One expecting? Well, there’s nothing like that that exists for caregivers, and we probably wouldn’t have read it if it does exist prior to becoming caregivers, because that’s just not what we imagined occurring. Furthermore, there couldn’t possibly be a standardized book for every medical parent, for every caregiver, because our experiences and our journeys are so nuanced and so dependent on so many factors, including things like those systems that we’re interacting with, you know, the support that we have or we don’t have. So instead of like building a book about what to expect, I feel like we’re building a concept that people can relate to that is moldable and flexible to fit into their version of caregiving, their version of that continuum. So this is the closest I personally feel that I’m ever going to get to having some sort of conceptual framework that kind of describes my life as a caregiver and what to expect. And it’s kind of ironic that we’re basically saying, I’m prepared to expect the unexpected. 

[00:13:12] Alyssa Nutile I mean, more for. 

[00:13:13] Erica Stearns That to happen over and over, too. So I think that’s pretty funny. 

[00:13:18] Alyssa Nutile Can I hot take for a second, please? 

[00:13:21] Erica Stearns You know, I love your hot takes. 

[00:13:23] Alyssa Nutile All right. Hot take. The other useful thing from this caregiver continuum, aside from self-compassion, is a little more outward compassion. 

[00:13:34] Erica Stearns Mm hmm. 

[00:13:35] Alyssa Nutile Because I’m not going to get too far into this. But you all know that there is a type of, quote, unquote, advocacy that we see out in the world that involves a lot of very harsh criticisms for parents who have, like just popped up in the medical world for using the wrong terms or showing the wrong things or talking about things in the wrong way. And I’m not saying that I agree with any of their sayings or the words that they use. I don’t. But I would say that a lot of those people tend to be very early on in their learning journey and the way that you approach them in trying to correct some of these misconceptions that they have can have a really big impact on how they view their parenting peers and their caregiving peers and all of that. So just keep that into consideration too. If you see someone and you get a little cringe and you’re like, Ooh, I probably wouldn’t do that. One, we’ve all been there, but to consider where they are, consider how long they’ve been doing this. Consider what the rest of their life looks like before you start making a lot of other really harsh judgments about them, perhaps. 

[00:14:47] Erica Stearns Oh, man, absolutely louder for the people in the back. If there was one thing I’d want my friends in the disability community to understand about, one kind of criticism that they have towards caregivers is that like when we’re looking out the way caregivers are sharing their stories and their experiences online, it is a learning journey and no one is going through any sort of special training process to become a caregiver and to also, like, learn how to story our journey publicly in a way that also, like, protects our children. Like that just isn’t a manual that we’re given. We’re just kind of thrown to the wolves and like, here, figure it out. You’re trying to like express your. Emotions. How you’re feeling has a new parent or a parent of a newly diagnosed child, and you’re you’re trying to inform your friends and family who don’t understand, who have a lot of questions, and you’re tired of trying to field all those questions 100 times. So you patch it all up into a pretty little package that you put online so that any assumptions or concerns or questions can be addressed in this. And then over time you learn, Oh, baby, I don’t oh, everybody that’s and that is a part of the continuum because I personally feel like I have revisited that phase over and over, depending on the circumstances. 

[00:16:15] Alyssa Nutile I totally agree. I’ll dig into this a little bit more in just a second when we start going through the stages in the continuum. But absolutely, like just yes to all of that. And then kind of on that note, again, we have discussed if you give care and in this context, if you gave care to a medically complex or disabled child, you are a caregiver. If you do any sort of advocacy, you are an advocate. And as we’ll get into it here, I do think there’s sort of a misconception that people are like advocacy. It’s like picketing and writing letters and doing this and doing that. I mean, it can be those things, but as we get into, it’s just showing up for your kid whenever they need do. So like in the doctor’s office, you ask questions, you want to make sure they get the right care. That’s advocacy. I just want to like throw that out there. And we have this from another parent, Kayla, for sure. She said it is hard to see disability parents of younger kids who seem to be further along in their healing advocacy journey than me. My child is almost three and I can’t imagine where I will be in a year. I agree that we all progress at different rates, but when I see moms of two year olds killing it and advocating away it can make me feel less then okay. And that’s the perfect quote to start with, because again, people are going to circle up and down this advocacy continuum, including those moms of two year olds who seem like they’re killing it. Right. Because I wasn’t killing it when Gemma was to. 

[00:17:45] Erica Stearns Throw a little RSV in there. And those moms are not going to be like they’re killing it anymore, right? 

[00:17:50] Alyssa Nutile No, And it’s not a criticism on their part. It’s just the way that this life goes up and down like that. 

[00:17:56] Erica Stearns In hindsight, we could have called it the caregiver rollercoaster, but that just seems to easily pop. Eventually, most people get off the rollercoaster. 

[00:18:06] Alyssa Nutile Right? Yeah, Yeah. The rollercoaster that you’re trapped in for the rest of your life. 

[00:18:12] Erica Stearns Happily, they’re excited to be on it, loving it most of the time. But there are some terrifying falls. 

[00:18:19] Alyssa Nutile Oh, yeah. 

[00:18:20] Erica Stearns All right. So I think next it’s important to just kind of highlight that we personally feel like there are three significant stages when we address this concept or definition of the caregiver continuum. So as we kind of go into the next part of this conversation, try to visualize this in a circle, really like these stages being in a circle, I don’t know, circle, timeline, triangle. What do you think? What shape do you think? 

[00:18:51] Alyssa Nutile Amorphous, multidimensional, transportational fields. You can hop over one. You can go from one to 2 to 3 can go to 3 to 1, anywhere in there, a mix of all of the above. 

[00:19:04] Erica Stearns A rep in the universe, we can be just torn into the next matrix. 

[00:19:10] Alyssa Nutile It does feel that way. Yes. 

[00:19:12] Erica Stearns All right. So imagine there’s three of those portals and we’re about to talk about that. Oh, a third. Do you wanna start us off talking about the first stage or portal? 

[00:19:23] Alyssa Nutile The first stage portal, run, whatever it is. Rollercoaster cart. Ooh.

[00:19:30] Erica Stearns I like that. 

[00:19:31] Alyssa Nutile That’s the learning to be a caregiver and learning how to advocate for our kids stage. So probably the first time you enter the stage is probably when your kid is diagnosed with something or first enters the medical system, which many times those are the same, many times they’re not right. Like sometimes it takes a long time to get a diagnosis. But when you first start really like getting into this very tangled web of like medical procedures, diagnostics, learning how to deal with medical professionals, all of that, it also tends to be the most jarring time, right? Because typically, even if you have a supportive family, they don’t really know what’s going on. Families tend to have very little support at this time in their life. Sometimes it comes on suddenly, so you might be making some major life shifts like you might be quitting your job, you might be moving places, you might be taking leave. All of this stuff that tends to happen right at this very beginning stage and on top of that. You’re learning how to take care of your kid who may now have medical issues that you didn’t know about beforehand or disabilities that you have to accommodate and you have to learn to help them like work through. There’s a lot of things that could be happening here. But I think another marker of this is that it tends usually to be the most intense time, because if we’re talking about like circling back to this later. So that’s how most people start here. You can also end up back here at any time. Your kid ends up really sick, any time they have a long hospitalization, any time they have surgeries that they have to do or perhaps really intense periods of therapy, that also kind of like wraps back around to this stage. 

[00:21:20] Erica Stearns Yeah, it’s like falling back into video game level one. Mm hmm. Over and over. 

[00:21:24] Alyssa Nutile You start all over again. And so that’s the caregiving portion of it. And then the advocacy portion of it is one. At the beginning, we’re just learning on the fly how to advocate for our kids, what to say yes to, what to say no to, what we’re allowed to say no to, how to say no, how to ask questions. So it can look like having hard and ominous conversations requesting support from a physician. Lots of phone calls between insurance and pharmacies and different referrals that you need. Managing DMS, scheduling appointments, all that. A lot of just very logistical type things that we have to do for our kids and also knowing when to cut it off. Perhaps you’re in a really intense therapy portion and it’s not working for you and you’re like, All right, we’re done, or we’re scaling back sometimes, you know, like your therapists may not recommend scaling back therapy, even though you can see that it’s not having a beneficial effect for your child the way that you would want. Right. Like, maybe it’s just very uncomfortable for them, That’s all the kind of advocacy that you’re wanting to do here. And then also, you know, like maybe when it’s time to not do that, there’s just a lot of decision making that tends to happen in this stage. 

[00:22:36] Erica Stearns Yeah. I’d also have to say that, like when I reflect on this stage, I think of a lot of the mistakes I made because of that learning curve, kind of the ways that I could have advocated better, or the times where maybe I didn’t have to advocate so aggressively. 

[00:22:53] Alyssa Nutile Sure. Been there. 

[00:22:55] Erica Stearns That’s definitely what comes to mind during the stages. Like there’s going to be mistakes because ultimately you’re learning a lot and there’s not a lot of time, as my memory serves, to like self-reflect and do self-care. So I think this is another thing to highlight. Another Instagram user mom of Hannah, mentioned that self-care to her is something that alleviates stress in their life and it improves their mental and physical health. I think we can all agree that that’s the case for self-care. So during this stage we don’t have that. She mentions things like baths, manicures. She says that doesn’t do it because immediately after those things are done, she’s right back into the extreme stress of her life, which again, is something I remember very cutely from this phase. Mm hmm. And what does relieve her stress is taking things off lists to make life better for her, their family, for themselves, advocating for their child. She says it makes her happier in the long term than things like bubble baths or manicures ever would. I think that’s just like a perfect comment related to this phase, because when we’re in this phase, we’re also probably looking out into a world or society where things like self-care are just like really being pushed as the way to do it, the way to balance it. And then when we try to take that long shower or bubble bath, we still can’t escape the stage. Like we’re thinking about our kid in the other room. We might be sick. We’re thinking about the thing that we need to see the doctor the next day during rounds. You know, it’s almost impossible at this stage to self-care in the traditional sense at least. 

[00:24:49] Alyssa Nutile Yeah, I would say one more thing, too, and this is not always true, but I think it’s most likely in this stage is that this tends to be the oversharing stage. 

[00:25:02] Erica Stearns Oh, yeah. Yeah.

[00:25:05] Alyssa Nutile I don’t mean that in that parents are like, Oh, I’m so sad and I need attention and blah, blah, blah. No, I don’t mean that. I just mean kind of like you said with the Facebook post where you just, like, write everything down and then are like sending it out to people. It ends up oversharing that way because it’s so overwhelming to be presented with all of this information from all of your medical providers. And then you have to be the conduit to your entire family, your friends, your whole network when you may or may not. Stand either the disease or the world or all the nuances around it, like, let’s be real. You probably don’t because you’re brand new to all of this, and then you’re tasked with like trying to explain that to everyone else. And for me, that just came out in a lot of like verbal vomit. A lot of times, like, I would just tell you things because I didn’t I didn’t know what was the appropriate thing to tell or not. I didn’t know what the right thing was going to be. To give this person context for my kid, there’s just so much you don’t know. And people are asking a lot of you and you’re very overwhelmed and your brain may or may not be functioning on any level other than making sure your kid’s okay. And so the oversharing happens. It just happens. Yeah. 

[00:26:16] Erica Stearns It’s not optimal functioning. We’re learning a whole new foreign language and like that. Oversharing for me was my attempt to transcribe it in a way that would actually help me understand it as well. The more that I work to, like, share it with my family and friends, the better I actually understood. It was like practicing, honestly. So yeah, that’s such a good point. I’m really glad you brought that up. 

[00:26:44] Alyssa Nutile And I mean, I don’t even mean that for like an excuse for everyone, but just that, like when you look back and you see all those posts and some of them you might go through and delete later and you’re like, Ooh, I wish I had said that. Like many of us had those moments. It just happens. 

[00:27:01] Erica Stearns Since we’re talking about the caregiver continuum and we’ve already mentioned that this is cyclical, it’s important to point out that that doesn’t always happen at the beginning of the journey or a new diagnosis. I’d like to give like a personal example of like when you’re experiencing a medical crisis, when you’re experiencing health instability, this process can start all over again really quickly and without any warning, without any preparation. It’s also important to note that this stage is often coupled with trauma. We are processing trauma traumatic events in real time. And so, yeah, mistakes are made. We should give ourselves some grace. I ask that others do too. But hopefully as you experience this continuum, my hope is that when you revisit this stage later or again, you kind of feel like it’s more manageable. You’ve been there, you’ve done that. The next time you revisit the stage, you’re a little bit more acquainted with it. So that kind of learning curve, it doesn’t feel so sharp anymore. Would you agree? 

[00:28:11] Alyssa Nutile Absolutely. And on the having some grace for yourself, we are moving into the next stage. I went through a few names for this one, but I think this is the most appropriate I’m calling this one the burnout stage. 

[00:28:27] Erica Stearns I felt that. 

[00:28:29] Alyssa Nutile So this is the stage that happens typically after just really intense periods that can be anything, that can be the diagnostic period, that can be the first entrance into this world, that can be just a really intense medical say or medical event, whatever it is. This is like when you get back home and the adrenaline drops a little bit and you sit down and you’re like, Oh my God, what now? I can’t do this. I can’t do this anymore. I’m overwhelmed. There’s so much. We just did all of this medical stuff and like, now I don’t even get a break. We’re just right back into caregiving. And if I don’t take care of myself, I am going to die. And then who’s going to take care of my kid? Because let’s be real. That’s usually like the thought process that it goes through, especially right now when we’re like, Why would I even bother taking care of myself? Except for the fact that, like, my child needs me, right? Because it’s very hard. It’s very hard. 

[00:29:27] Erica Stearns Our child, I felt like almost point in my wake, I been there. 

[00:29:33] Alyssa Nutile I need save. That’s why we put it on. 

[00:29:35] Erica Stearns The continuum was over and over. I was there two weeks ago, hardcore, like, Oh yeah, the burnout stage. I think you need that appropriately. Honestly. 

[00:29:47] Alyssa Nutile Yeah. And then this is the stage that what ends up happening is that we are so tired and worn out that we have to do some advocating for ourselves in one way or another and again, advocating for what you need, what you even need. All of that stuff is going to be different. So it often means you’re making care decisions not just for your child, but you’re also making care decisions for you and for your whole family. Maybe this is like scaling back therapy sessions because you just can’t be out of the house every day of the week, or you can’t have someone in your house every day of the week because you’re going to lose your mind. Or you have to get really serious about like bundling appointments for your doctors and you’re not making a two hour drive to see a doctor. If you can’t see another specialist the same day because it’s just too much. It’s too much. You write like maybe your kid could deal with it, but you’re the one who has to drive them. You’re the one who has to plan their meals around all that. Like, it’s just very intense. And so you start making decisions, perhaps considering your entire family unit. Not only your medically complex child. 

[00:30:52] Erica Stearns Yeah, very accurate. 

[00:30:54] Alyssa Nutile Also, this is the stage where you’re usually like, I am mentally unwell due to all of the trauma that I have experienced. And it would be a good idea to maybe get a little support. Usually that’s what happens in this phase at some point, right? Like you understand that not that you’re weak or anything like that, but you understand that like, pardon my French, but you’ve seen some shit, right? And you’ve got to get that sorted out. You need to process through all that. So you’re getting a mental health support some way or another. For some people it’s medication, for some people it’s therapy. For some people it’s all of that. It could be finding additional help in your home if you are the type of person who can afford that, like independently. You are probably doing that at this phase. For those of us who can’t, you’re probably looking into like at home nursing, if that’s a thing that you qualify for. And it’s just broadly that general understanding that like you have to be well, to be able to take care of your child, like you cannot completely grind yourself into dust if you also expect to be able to take really good care of your kid. You just can’t, you know, like not to be cliche, but like you can’t work from an empty cup, right? And if there’s nothing left of you to give to your kid, like you’re not going to be able to give anything to them. 

[00:32:10] Erica Stearns I agree. What happens when there’s no cup period, right? Yep. You have nothing to pour from. It’s hard for me to talk about this stage because I’ve personally been in that stage off and on and sometimes for brief periods of time, some for extremely prolonged periods of time. I’m not in that stage right now, and I can kind of look back and recognize who what a struggle it is. Honestly, it’s been in this stage that gives me a little anxiety about like things like medical crises and and losing support like home health nursing because kind of being stuck in this burnout stage, I feel helpless. I feel exhausted, and it does kind of shape and evolve the way that I’m showing up not only as a caregiver but also as an advocate. So when I was thinking about this stage, we pulled this comment from Instagram user Brianna Alcock. And Brianna’s actually a super wonderful fan of ours. 

[00:33:17] Alyssa Nutile Brianna, we love you. 

[00:33:18] Erica Stearns We love you so much. You’re an amazing contributor to caffeinated caregivers. And I thought this was a really great statement. She said, While I recognize my own privilege in some areas, the idea that some moms get regular, stylish haircuts with color and their nails done, or they get to go to themes like workout classes and maybe also have a cooler career like that. Lifestyle is not realistic for some of us, and even advocacy may not be realistic. It can be really hard. So she mentions that from the outside family and friends and even the health care team can expect you to have all those pieces together and be really good at all those things. And she mentioned that she finds that when the medical systems are less personalized and they just kind of provide very general advice, support interventions, then that’s when the advocacy becomes more critical in making sure that you’re advocating for appropriate care support. However, once those systems begin to work correctly, like really work for the family, then your advocacy can kind of graduate up beyond just advocating for your basic needs to be met. However, once those systems begin to fail again or falter, or if like the circumstances in your life, like illness or health stability change and those basic needs begin to change again, then that advocacy has to drop back down to the basics. Like you cannot do the higher level advocacy. You’d have time to write letters to your legislators or make calls. You don’t have time to be posting educational content on social media every day. You know, you don’t have time for haircuts or workout classes or a career. Even So, she just noted that our self-care can’t always take a backseat in the name of greater advocacy, which I thought was interesting, too. Have you done that during the stage where you’ve been advocating so hard to some degree, like for the even like the basic need that your own self care took a backseat? Because I certainly have. 

[00:35:30] Alyssa Nutile Totally I mean, I think that’s again part of the very first stage when. So, Gemma, again, if you want to hear her like NICU story, you can go to the right wife to listen to that. But, you know, we had a very traumatic NICU day. But then coming out of the nick, you say one, any time you have a kid with medical complexities and they’re born with them, you’re already going to have like a million doctor’s appointments. And sort of how I was saying earlier, like when? So Gemma’s medical team is an hour and a half away. And when she first came home, they gave me a list of probably a dozen specialists that she had to make appointments for. And what they do coming out of the NICU is they just schedule them. They just put you in like the next slot that you can get. So coming over in the nick, you I had like ten appointments to go to that were an hour and a half away with a medically complex baby who did not have a job at the time and could barely eat unlike ten different days. 

[00:36:26] Erica Stearns And that’s a. 

[00:36:28] Alyssa Nutile Lot. I mean, just do the math. 30 hours of driving right there in a couple of months with like a kid who can’t eat. And so that’s like a six hour trip. By the time we get to the appointment, take all the breaks for her to like, get all the things that she needs and stuff. And then you have like early intervention calling you and all of that and you just say yes to everything. Like you don’t call up people and are like, Oh, can I get appointments on the same days? Like because, you know, they tell you that like you’ve got to go to these appointments. It’s super important. You have to go as soon as you can and you don’t sort of realize at the time that like you can take a step back and advocate both for your kid and for yourself to make that more convenient for you. And that making things more convenient for you is not the easy way out or anything like that. Like you are allowed to do that because the rest of your life is probably hard. So don’t make the parts that could be easier, harder on you. 

[00:37:23] Erica Stearns Absolutely. But I also think this stage reminds me of something I saw recently from our friend Jordan. Her Instagram handle is complex as a mother in her story, she was documenting this experience. She was happening with getting stuff covered through insurance and she was like totaling the number of hours that she had spent on the phone back and forth with insurance. I think the last I remember, she was up to 16 hours. The reason this really like hit me is that I had recently done a similar thing where for insurance reasons, things getting denied that should have been covered. I had spent 18 hours getting that address. Now, when I think about like our time that we have available in a day between work and caregiving and all the things that comes with how does one fare in self care advocacy? Anything when you’re spending that kind of time having, like Brianna mentioned, your basic needs met, It’s impossible. And at a certain point there are things that you cannot not follow through, right? Like, we need the medication, so we got to call the insurance. We can’t reschedule that. We can’t postpone that. You just got to like, barrel through it. And the things that go on the back burner during that time are things like taking care of yourself, getting sleep. Sometimes for some people, their jobs, because those phone calls have to happen during business hours. You know, this burnout stage, we’ve spent a while talking about it because, I mean, all of these stages are important, but this one, there’s a real visceral feeling that I get when we talk about that. 

[00:39:02] Alyssa Nutile So, yeah, I think the biggest thing that I’ll say about this stage is that it’s not so much like a checklist of things that you should do or shouldn’t do or whatever, because I’m not going to be able to tell you like, Oh, you can access this or you can access that or like, go to that workout class. Like, there’s no way. I don’t know what your life looks like. I don’t know what’s going to be feasible for you or not. But what I would say is that when questions start to be asked, like, what is the priority here and what doesn’t have to happen, maybe like right now, start factoring yourself into that. Like, okay. 

[00:39:39] Erica Stearns Yeah, do I. 

[00:39:41] Alyssa Nutile Have to do the hour and a half of physical therapy, home exercises with my kid that they don’t even really like to do? Because the early intervention lady told me that I have to do it, or can we do 20 minutes of those and then I can snuggle on the couch with my kid for an hour and they nap on my chest. And I read a book, you know, like start thinking of it that way. Just start factoring in like, what can work for both you or you and your kid instead of having to, like, sacrifice every part of yourself for your child, especially knowing that at the end of the day, like, that’s actually not that good for them either. 

[00:40:20] Erica Stearns Right? And I’ll also add to that, like, feel free to ask for support, because if there’s ever a point in time when support can probably be the most critical thing you could do and ask for, that’s it. So if you’re in this stage, yeah, know that you should and could and you can ask for help. 

[00:40:42] Alyssa Nutile Well, on the asking for help. Note Stage three I call the set up and I’m going to do something about it today. This is usually like for one thing, you’re fed up just with the continuum itself. Maybe you’ve cycled through stages one into a few times. You’re just you’re tired of being trapped in the system. Probably your life is a little bit more stable now, right? Like you have some system for taking care of yourself. Your kid hasn’t had any major instances recently. You have a good system set up at home. You have a little bit more brain space and energy. And let’s be real. You’re probably mad now. You’ve probably gone through your grief cycles. You’re probably worked through some of your trauma and you’re into the angry and indignant stage and you’re ready for some things to change. You want some stuff to change, and you recognize that you’re going to have to advocate to the powers that be to make that happen. 

[00:41:37] Erica Stearns The spicy side of me would call the stage the fuck around and find out Stage. 

[00:41:43] Alyssa Nutile It is, though. It is, Yes, absolutely. 

[00:41:47] Erica Stearns Three people. For those of you who do not like profanity in your listening, it won’t happen all the time, but this seems appropriate for it. 

[00:41:54] Alyssa Nutile It’s the right vibe. So. All right, so this is the stage where if you say advocacy to the broader public, this is the kind of advocacy that they probably recognize. 

[00:42:05] Erica Stearns Oh, yeah. Good point. 

[00:42:07] Alyssa Nutile Right. So community organizing, writing letters and contacting lawmakers, researching grants or funding for new projects, educating larger audiences to what you need, what your medically complex kids need, all that kind of stuff. They’re really what feels like bigger, more forward facing advocacy. That’s this final stage. Now, having said all of that, is everyone going to have the capacity to even think about undertaking this type of work? Erica, what do you think? 

[00:42:41] Erica Stearns I’m going to say no for $500, the answer to that question is no. And that’s okay because, you know, you have to show up to advocacy in your own terms. The type of advocacy that your family may even require differs from so many people. The way I look at this is kind of the way Brianna mentioned. You know, you’re not just advocating for yours or your child’s basic needs. You’re doing that broader advocacy for the community. And how you do that can just look very different based on your ability to show up based on the skills you came to caregiving with, based on the time that you have, the support you have can just be really intimate and personal. It can just be like helping another family through a phone call or, you know, nurturing a relationship with another caregiver, or it could be really large. You know, you mentioned these more like legislative stops, but it could also be like getting involved in creating an inclusive playground in your community or creating a peer support group for caregivers in your community or online. Like, what’s important to think about in this stage is that the intention is that it’s broader, reaching outside your home, reaching outside your own needs and your child’s needs, and kind of looking at how community work can help, you know, make life easier and more accessible for families like ours. 

[00:44:08] Alyssa Nutile This can dovetail a little bit into the previous stage, too, right? Oh, yeah. Cause this is the thing that we’re going to dive into more in a future episode because it’s such a big, deep thing. But the idea of advocacy as an act of self-care, like advocating for someone else, advocating for kid, advocating for yourself, that is the thing that actually feels like self-care to you and that can be in this stage, right? Agreed. But it also could be in the message previously. 

[00:44:39] Erica Stearns I also think this might be the stage where we actually start forming that relationship with advocacy and in actually seeing it as a way that we can do self-care. Excuse me, there’s the dog putting in there and but I was not able to really view advocacy as a form of self-care until I got to this point, until I reach the stage and I don’t know what what age do you think Gemma was when you kind of got to this point? I’m curious to know, because it definitely was not in the first year. I know that while on EFT, I. 

[00:45:11] Alyssa Nutile Mean, I think it was after we both had at home nursing and she got her g tubes. So maybe between like two and a half and three for her. Yeah. I mean it was a while, it was quite a while after. Yeah. 

[00:45:26] Erica Stearns You know, I like the you instead of seen an age, you actually shared the things that kind of came in that improved your lives. Markers for when you were able to reach the stage? Because I do think that actually is what greatly impacts a person’s ability to even reach the stages of stability. What kind of support you have, you know, have you found a routine in this life? Have you found a system that works for you? Do you have a well-functioning medical care team that you can like turn to as well? I think all of that really is a deal breaker. And whether or not a caregiver is able to get to this stage and then sustain it or stay in it for a prolonged period of time. 

[00:46:06] Alyssa Nutile Yes. Okay. And on that note from a Deveraux 55, she said, I’ve gone through waves where I am volunteering left and right, doing speaking engagements and reaching out to other moms, adding more all the time. This has been largely dependent on what my child is going through medically. When my plate is overflowing, I struggle to keep up with the extracurricular advocacy. I like that extracurricular advocacy. Another potential name for this. Simultaneously, I feel immensely driven to keep up with it. I have to make sure that what I’m doing is serving myself and my family, not just outside parties, though. It’s definitely okay to serve outside parties as long as it doesn’t get out of hand or sacrifice your mental health. 

[00:46:50] Erica Stearns What a great point. 

[00:46:51] Alyssa Nutile You said it. 

[00:46:52] Erica Stearns You really did. Even though I just literally described the stages, when you start kind of serving beyond yourself, part of making this stage sustainable is knowing when that part of advocacy has to take a back burner. To refocus and revisit the advocacy you need to do for your basic needs. That’s how I interpret this. Would you agree? 

[00:47:16] Alyssa Nutile Yeah, absolutely. And I think that’s part of the moving up and down of the continuum, too. Yeah. 

[00:47:22] Erica Stearns Yeah. 

[00:47:22] Alyssa Nutile Sometimes it’s inadvertent. Sometimes it is voluntary, though. 

[00:47:27] Erica Stearns Yeah, you’re right. It’s voluntary out of necessity, too. 

[00:47:31] Alyssa Nutile Yeah, but you can make the choice to step back to certain parts of this continuum. You know, doing more advocacy, doing less advocacy when you can recognize where you are on the continuum and recognize what your needs are at the time. You can make a choice for with the types of things that you’re getting involved with or not and what you can handle at any given time. 

[00:47:52] Erica Stearns I love that. 

[00:47:53] Alyssa Nutile All right, Erica, do you remember this morning we were like, this episode will be quick and easy. This will be our shortest one yet. Maybe like 30 minutes. And here we are. 

[00:48:03] Erica Stearns You said that I knew better than to say that. 

[00:48:07] Alyssa Nutile Yeah, because I always underestimate how much we have to say about things and like, Oh, I can talk quick, I can’t talk quick. I’m absurdly verbose. This is a stupid assumption for me to make about myself. And yet I do over and over again. Anyway. 

[00:48:22] Erica Stearns It’s a good. 

[00:48:22] Alyssa Nutile Job. It was a good jet. 

[00:48:24] Erica Stearns I think we covered it. 

[00:48:25] Alyssa Nutile We did. That’s all we’re going to say about the caregiver continuum right now. But we’re coming back to you in the next episode for a little less cerebral, a little less intense, a little less terminology. We’re just going to talk about what our lives would look like as caregivers at each of these stages. If we could just, like, dream and have like the ideal kind of right, is that how you envision? 

[00:48:54] Erica Stearns Yeah, If we had all the time in the world, all the resources in the world, all the support in the world, what would these stages look like in an ideal world for caregivers? Let’s give you a fun conversation. It’s also going to take place officially in the New year. And so kind of with this idea that like, you know, New Year, new us, I don’t know. What would it look like if the ideal vertical. 

[00:49:19] Alyssa Nutile Were dreaming big. 

[00:49:20] Erica Stearns Dreaming big love. 

[00:49:21] Alyssa Nutile Yeah, the ideal. And maybe sort of like sorting out Okay, what specifically do we need to like when we talk about advocacy and what we’re advocating for? What are the things that we do actually need at each stage? What’s the stuff that people could give us or not give us or we could ask for at each of these stages to make our lives a little more manageable? You know? 

[00:49:43] Erica Stearns So in the meantime, as you’re following us on Instagram, make sure to watch our stories, because we’re going to be asking you guys these questions, too. We want to hear from you guys what the ideal looks like, not just me and author. So. However, wishing you the best and the holidays to come. I’m going to see you on the other side of 2024. But until then, look, look. 

[00:50:08] Alyssa Nutile Here it comes. 

[00:50:09] Erica Stearns May the force of caffeinated caregiving be with you? 

[00:50:22] Alyssa Nutile Byyyyyyyye