Ep 9: Mental Health Vibe Check: The State of Caregiver Mental Health & the Supports That Keep Us Going in 2024

[00:00:00] If you’re a Ben and I’m a Leslie, which characters are we married to in real life? I would say that I’m definitely probably married to a Ron Swanson. I’m married definitely to somewhere between like a Ben Wyatt and a Ron Swanson. Yeah. Grouchy but like in a cute way. Yes. Very idealistic, a cinnamon roll at heart, but I also am married to like a huge nerd.

[00:00:37] Welcome to Caffeinated Caregivers, where we have coffee dates and conversations about all things related to caregiving. Hello, hello, Alyssa. How are you on this chilly Friday, confusing weather afternoon? I’m very good, Erica, there was snow on the ground this morning, and it’s all melted now, which is nice.[00:01:00] 

[00:01:00] But okay, so both of us in our different areas are living in the path of totality for this eclipse that’s coming up, right? Yeah. And so both of our respective cities are like, freaking out about the tourists, like stuff everywhere, all the people are coming so many events, eclipse, yay, yay, yay, yay. Except that I live in Erie, Pennsylvania, where it is cloudy, like 200 or more days of the year.

[00:01:29] And it is supposed to be like, right, it keeps waffling back and forth between like, cloudy and partially cloudy on Monday, according to the weather radar. So we’ll see. It’s been really adorable watching the weatherman trying to predict like five days in advance if there will be clouds at a given location during this eclipse.

[00:01:53] And I feel like in Erie, they’re like trying to be helpful. They’re like, there might only be a few clouds that day. And it’s like, Sir, it’s [00:02:00] Erie, Pennsylvania in April, like I mean, 50 50, if we’re lucky, that, like, we will actually get to see this eclipse, but. How cool is it that we both live in the path of totality?

[00:02:14] That’s pretty cool. Look at us. This friendship is cosmic. It’s baffling to me, like, all of these people who are like, this is the thing. We’re coming to Erie, Pennsylvania for it. We’re going to camp out. We’re going to do all this stuff. And, um, okay. So do you know in parks and rec? Where Ben Wyatt, like the first few times that he meets like Will Sebastian, he’s like, I don’t get it.

[00:02:38] It’s kind of a small horse, you know, and everybody in Pawnee is like freaking out and they’re like, Oh my God, Will Sebastian, best thing ever. Like, that’s like me in this eclipse. I’m like, I don’t get it. It’s gonna be kind of dark outside. But I may report back and have a change of heart similar to Ben Wyatt.

[00:02:56] And little Sebastian, I’ll let you know next time. You better, because this [00:03:00] is your Pawnee gal talking right here. And my entire community is freaking out. Because the eclipse, the path is like crossing over in the exact same spot where it crossed back in 2017. So, there’s a lot of really interesting theories happening in our community about what will occur.

[00:03:24] During this year’s eclipse. So wormhole wormhole portal to another dimension. Listen, anything like we’ve talked about this before. Nothing is off the table to me anymore. So whatever, if it’s a 0. 0001 percent chance, it’s still pretty high in my book. So I guess if I return to this podcast because I did not get sucked in the portal, then I That’s a good thing.

[00:03:54] Our entire city is like shutting down at noon. All the like [00:04:00] public buildings, the YMCA, I usually swim in the afternoons on Mondays, and the Y is not going to be open afternoons. I’m like, ugh, this is ruining my schedule. You’re so mean. such an inconvenience to you. This phenomenal thing that is very rare is happening and Alyssa’s like, God, I can’t swim.

[00:04:21] Not even that. I can’t swim at my usual time. I’ll have to go in the morning if I’m going to swim. Well, welcome to Caffeinated Caregivers. You are seeing the real version of us on display. I think that’s accurate. I think I am like, I think that’s accurate. If we had to, like, pick one, I think you’re more Leslie, and I’m definitely more Ben.

[00:04:41] Yeah, this makes so much sense when it comes down to it, though. Wow, that just explained everything. Honestly. I’m just glad you didn’t call me an Andy, so. No, no, you’re not. Some days. Neither of us are Andy. Some days. Some days. Well, [00:05:00] uh, we’re not going to get back into it because I told the story already. on our caffeinated caregivers.

[00:05:07] Oh, you’ve had an Andy day this week. But I did have an Andy day. It’s not just me. Like, there are days where you just feel like you are rolling down the hill and you’re just like, I’m just going to keep falling. I fell in the pit. I fell in the pit on Monday for sure. I also was like falling into the pit all at the end of the week before and then like Monday was like crashing at the bottom and I was like this is it, this is rock bottom for me.

[00:05:34] Ugh. I’m so sorry to hear that. Well, I’m feeling better now. I know. I mean like, do you still feel like, do you feel like you’re out of the pit or just like on your way out? Like did you find a cardboard box in the pit and just get comfortable? for a couple days I did. Yeah, I had a lot of things that had to be like finished by the end of the day on Tuesday.

[00:05:54] But then on Wednesday night, I was able to go to bed early [00:06:00] nights. And so I was in bed from like nine o’clock to like 730 the next morning. And I was a changed person. When I got out of bed after that. I was like, all of a sudden the sun is shining. There’s birds outside. I haven’t slept more than like a few hours and like days, all these things.

[00:06:21] And then all of a sudden I get like an actual full like restful night of sleep. And I’m like, the world has changed. Yes. Which, interestingly, that’s a phenomenon we’ll be discussing today. It is, you know, we usually start our conversations on this podcast, asking each other what’s feeling us today. But we’ve had a long stretch of challenges that we’ve been facing in the last few months.

[00:06:48] And so it seems like a natural segue into talking about mental health. And I kind of thought instead of asking each other what is fueling us [00:07:00] today, in reference to our liquid drinks, I’m curious to like, what’s fueling your mental health in a positive way today? I think a few things. One, I think I cannot.

[00:07:11] ignore the fact that like, getting not even like a lot of sleep, but just like an adequate amount of sleep, which is a huge factor in my mental health. And I’m not alone in that, again, we’ll get to that. But like, that was one of the big things that came up and like, what affects your mental health, and it’s like sleep.

[00:07:29] And again, in, like many other circumstances, the solution would be like, go to bed early. We’re caregivers, so like, we don’t always have that option of like, when we go to bed, or when we wake up, or how many times a night that we go to bed and wake up. So, that can be tricky, but like, it’s not lost on me how different my outlook was the day of Wednesday when I was like completely exhausted.

[00:07:57] And when I woke up on Thursday after [00:08:00] like being able to be in bed for like 10 hours, I was like a completely different person. Makes such a huge difference. The other thing, well, I’m going to say two other things. So one of them should not be a surprise to anyone, but like regular exercise is a really big deal.

[00:08:17] It’s also like the first thing to go, right? Because it’s, one of those things that feels non essential to our survival. So like, when the crunch comes, like, that’s the first thing that goes out the window. But the other thing, the last thing I would say is that like, I have work that I do that is very meaningful to me that I get to go do every day.

[00:08:40] And I don’t know that we’re going to touch on that a whole lot in this episode, the way that like, you know, having Some type of like either career or like work outside of caregiving makes an impact and maybe it doesn’t make an impact to that many people to like we didn’t hear a ton about it. But for me, it’s huge because it’s easier for me to like keep going.

[00:08:59] [00:09:00] When one I have a lot of belief in the work that I’m doing like here with you and at the real life and my other jobs, and the advocating I do for Gemma and taking care of my family like that’s huge. So what’s fueling you Erica? Well, I think that you described like everything I would touch on as well so I think the only thing I would add that kind of for me overarches all of that and Really affects and impacts whether or not I’m gonna get good sleep whether or not I’m going to Be able to do any self care or show up in a meaningful way through my work or through what we do at Caffeinated Caregivers.

[00:09:41] I would say having support has been a huge boost to my mental health because it allows me to do all the other things. So we have a really great team of home health nurses right now and I just can’t thank them enough or express [00:10:00] enough gratitude for their support because it allows me to be able to. get good rest.

[00:10:05] We don’t have overnight nursing, but knowing that we’re going to have a nurse the next day helps me sleep better at night. Knowing that I’m going to be able to, you know, indulge in some self care or do some meaningful work that helps me also sleep good at night, which then helps me to wake up feeling good about life and myself and not just any support too, like really good support for my kids, people who, love my kids, entertain my kids, give them really great care.

[00:10:36] That has been a huge benefit in our life. It’s been a journey to get to this point too. So I do not take it for granted at all. But with that said, I mean, that’s the theme that we’re going to be talking about for the most part today, which is You know, the state of mental health for caregivers. Yeah, and when I say it, it [00:11:00] feels very, like, obvious and redundant.

[00:11:02] But then I’m also reminded that I don’t think this is a thing that we can say enough. If we get down to it, why are we talking about caregiver mental health? Like, why does it matter? What’s the point? And it’s the same point as always. But it’s the same point as always, but we did so much research for this episode that instead of just me and Erica telling you the same thing as always, I’m going to read some quotes that I pulled from research papers about why we’re talking about this again.

[00:11:34] And I quote, well being is important for mothers of children with a disability because resilience and sustaining caregiving capacity are closely related concepts. We’ve got another one. Maintaining parents capacity to care long term is paramount to the well being of children with disability. Those are from a paper published in 2018, from a paper published in [00:12:00] 2017, and I also have like a dozen more just like that, but for space and time and all those things.

[00:12:06] I’m not going to read all of them. Because the other thing is like, that is stuff that we already know. And that we say all the time. And like Eric and I were talking before about like, why we feel like we need validation to say those kinds of things like, Oh, we’re right. We found it in a research paper, like people are studying this.

[00:12:24] But duh, of course, like we’re the ones taking care of our kids. If we’re not our best selves. selves. If we’re not like even a particularly healthy version of ourself, like we can’t take care of our kids to the best of our abilities and to the extent that they need and that they deserve. So obviously it seems so obvious to me, but like, I feel like we forget that a lot.

[00:12:45] Like, Oh, it’s selfish of me to like, think about this or, Oh, I’m just complaining or this or that or whatever. And it’s like, no, this is relevant. This is relevant to your entire family. I mean, we had a private conversation [00:13:00] about this, my personal desire to find data or statistics that speak to an experience that I’m having that validates it, but you and I have also talked about like, why do we feel we have to have that?

[00:13:15] Why do we feel like we have to have numbers to validate what we are saying to be true regarding our lived experience? And the answer to that is we don’t. Everyone’s lived experience is valid. And I want to make sure that we speak to that just in this moment, because while we’re talking about mental health, I want to acknowledge that there are caregivers out there who are not experiencing mental health struggles.

[00:13:43] There are caregivers out there who really have things well managed, they’ve got good support, and that is valid too. However, in the field research that you and I did, we found that that is [00:14:00] not the predominant case. For the most part, us caregivers are struggling. While like you and I had these conversations privately asking ourselves, is it just us?

[00:14:12] Is it just us feeling this way? We turn to our community and we learn that no, it’s not just us, but there’s a lot of barriers to getting good mental health support. There’s a lot of barriers in just like feeling safe and comfortable to talk about it. And that’s what we’re here to do today to kind of take a deeper dive into those aspects of mental health for caregivers.

[00:14:36] I don’t feel like we need to give the disclaimer or the caveat, but I will. We’re not mental health professionals. And like, we encourage people to seek that out if they’re in need of it. This conversation is really just to validate if you’re experiencing these things, you’re not alone. So. This is more of a 2024 vibe check for caregivers mental health.

[00:14:57] I love that. I love that. All [00:15:00] right. I think it’s appropriate to first start with, why are we uncomfortable with or why do we find it hard as a community to talk about mental health? Okay. Alyssa, what do you think? It’s not even just what I think. We asked. We literally asked, like, what keeps you from talking about your mental health?

[00:15:19] What was your hypothesis, though? And was it supported through how people answered? Yes. Like, a lot of the things came up that, like, I expected. My hypothesis was just going to be probably the biggest one is still the stigma aspect because as a society, I think we’re a lot more comfortable talking about mental health, but I also sort of feel like we’ve broadly kind of like gotten tired of talking about it the last like four or five years.

[00:15:52] So now it’s like you talk about mental health and like people kind of tune it out. Everybody knows that like you can go to therapy, like go to [00:16:00] therapy if you need mental health treatment or whatever. And we’re going to get into like one why that’s not necessarily like the catch all solution to all of this.

[00:16:08] But I do think that there’s still a lot of stigma. I think the stigma is different. than what it used to be, but I, I don’t think it’s gone away. Really. What about you? I thought it was stigma combined with just not having safe spaces to talk about it. Like in my personal experience, feeling like a negative Nancy, if I share too much of my mental health struggles with people or You know, if I give them an honest answer into how I’m doing, like, maybe they’ll just stop asking and kind of retreat from my life.

[00:16:43] So I don’t know if that’s stigma or if that’s just like, fear of further isolating myself by being authentic with my struggles. I saw that come up too, and that was really sad, honestly, like, validating, but like, in the worst way, right? [00:17:00] So, let’s talk about what our community said. That exact thing did come up multiple times.

[00:17:05] Like, one, either they didn’t feel safe taking the risk to see if it would, like, lead to isolation, or two, they did take the risk of talking about the thing, and it did lead to isolation, and so they were like, okay, well. I’m not going to do that again, because I talked about it. And then no one wants to talk to me anymore, because it was like too much or too sad or too whatever, you know?

[00:17:26] So there was that kind of on the other end of that was people would acknowledge it and be very dismissive, right? So there’s multiple ways that that can happen. We had examples of people just literally dismissing it being like, Oh, are you sure you feel that way? Or like downplaying like, Oh, Maybe you’re just having a bad day.

[00:17:48] Like maybe it’s not depression or anxiety or whatever. So there’s that kind of downploying. And then there’s also like the platitudes, toxic positivity, like general lack of empathy that you get. So either [00:18:00] people telling you like, yeah, look on the bright side or keep looking for the good in things and whatever, and you’ll feel better.

[00:18:05] All that BS that people tell you. I think the end result of all of that is just feeling unsupported and more isolated. And, as others mentioned, just feeling too tired emotionally and energetically to even have the conversation. Like, I find myself avoiding those interactions a lot because I’m just too tired to have the capacity to navigate my way around it.

[00:18:35] To either avoid it or to address it. It’s just, I’d rather not put myself in a situation where I have to be confronted with those conversations, so. Having to justify either what you feel or why you feel or are allowed to feel the way that you feel. is exhausting. Full stop. Yeah, such a great way of framing that.

[00:18:59] [00:19:00] Another thing just related to safety that we saw come up, and this is something, you know, I’ve heard stories about in the news, in social media, But just the fear of their mental health struggles being used against them, either by their family members, their partners, medical professionals, social workers, it just like really leading to feeling unsafe, like not having safe spaces to talk about this too.

[00:19:30] I think those things are related. I’ve seen a lot of caregivers who have asked for support or expressed that they’re in dire need of support and that information being used against them to question their ability to be a caregiver and provide their child quality care and, but I think it’s just really dismissing the strength that it takes to ask for help.

[00:19:54] Asking for help or even just acknowledging the struggle and like making space [00:20:00] to talk about that. That is a demonstration of like showing yourself and your child good care and when that’s turned against you it can breed so much harm and distrust and that could further isolate someone who is experiencing mental health struggles.

[00:20:18] And we’ve got kind of like one more thing that a little bit goes hand in hand with that. So there’s like the outward stigma, there’s other people potentially using the information against you. There is also some internalized reasons that people don’t like to talk about mental health. There was in our messages a couple of people who mentioned that like it just took them a really long time to talk about it because they were in more or less denial that like what they were actually experiencing was a mental health crisis and not just like a bunch of bad days.

[00:20:54] For an entire year in a row, you know, like that kind of stuff, but then along with that, the reason [00:21:00] that like, oftentimes we’re hesitant to acknowledge that is like, again, stigma that like we hold internally shame guilt that like, you shouldn’t have to be feeling this way. Like you shouldn’t feel this way when like other people have things to deal with or whatever reason that is.

[00:21:16] It’s just basically a lot of internalized feelings that keep you from acknowledging what may or may not be happening at hand. And I do want to say here that, like, having some bad days or this or that or whatever, I’m not saying that, like, if you feel anxiety sometimes or if you feel sad sometimes or whatever, like, you should look internally because you probably have a mental illness.

[00:21:35] I’m not saying that. But I am saying that, like, We brush over things sometimes and try to look on like the bright side or whatever, sometimes just so it’s like one less thing that we have to deal with, because it’s like, you can maybe wait out bad days. But if you’re like, No, I have clinical depression.

[00:21:53] Well, then you’re like, Oh, well, now I have to go deal with that. It’s just one more thing to add to your plate. So I think there’s aspects [00:22:00] of that too, just like not wanting to acknowledge what might be occurring for those reasons. Absolutely. You know, I also want to add that it takes a while to find someone you can trust to really get in the weeds with it.

[00:22:15] I feel like I’ve been really fortunate to have some good relationships in my life that have not shied away from this kind of hard discussion surrounding mental health, specifically as a caregiver. And I’ve also found new relationships, specifically online, with other caregivers that have allowed me to build that trust and talk about these challenging things.

[00:22:40] And that has been such a huge benefit to me. But it wasn’t always like that. Like that took time. It took time to build that trust with each other. And that was something I really didn’t have at the beginning of this, I think. So that almost made that initial first entry point [00:23:00] of becoming a caregiver that much harder, I feel like.

[00:23:03] Yeah. Let’s just jump into it here. Okay, so we have talked previously about how there’s not a ton of data on like caregivers and parents of kids with rare disease and stuff like that. And that’s still true, in most instances, it’s actually not that true for how is the mental health of caregivers, there are actually dozens of studies in different countries in different parts of the world, some old ones, some new ones, there’s a lot of research on just the like, basic, how are they doing, kind of aspect.

[00:23:35] There is. Because I saw, there’s this research article that said, of the nearly 6, 000 records they screened, Only 19 studies met the criteria of a study review for depression and anxiety in parents of children with intellectual and developmental disabilities. That is wild to me. Well, [00:24:00] what are we comparing that to?

[00:24:01] Cause that’s like 10 times more than we found on like career stuff. This is true. But I would argue that’s not a lot, you know? Compared to stuff that you can find on caregivers, I think this is probably, like, one of the more researched areas. The caveat is, it’s not research on solutions. Like, how do you fix these problems?

[00:24:25] It’s just basically trying to answer, like, do caregivers have mental health stuff? And the answer is pretty much, like, yeah. That’s basically what the research was. It’s also worth noting that in that meta study that you are referencing that we found that has 19 studies included in it, it wasn’t just, I think, what we think of more in our particular population of caregivers, right?

[00:24:50] Which is typically more like medically complex children, right? It’s also including like, children with autism, children with like, [00:25:00] unspecified developmental disability and stuff like that. So, okay. And so what does that study say? I’m just going to read it. Approximately one third, so 31%, of parents of children with intellectual and developmental disabilities, IDD for short, reach the clinical cutoff score for moderate depression, compared with 7 percent of parents of children without IDD.

[00:25:26] That same 31 percent of parents of children with IDD also reached the cutoff score for moderate anxiety compared with 14 percent of parents of children without IDD. So basically the rates of clinical depression and anxiety in our population of caregivers is a lot higher than your quote unquote typical parent.

[00:25:50] Double and triple. So that was one study. We probably pulled like two dozen articles for this, so I’m not going to cite everything, but we will [00:26:00] add all these into the show notes if you would like to go dig through the studies yourselves. We found another article that talks about parenting stress levels and how The parenting demands for parents of developmentally disabled children is again significantly higher than your average parenting population.

[00:26:17] Again, this is not stuff that we don’t know. I think pretty much everyone in this community would be like, yeah, I got it. It’s just another avenue of like, all right, it’s nice to see someone else with an official credential or whatever validate the stuff that we already know. And then finally, at the population level, this study found strong evidence that parents of children who have a developmental disability experience higher odds of depression or other mental health diagnoses compared to parents of children who do not have a developmental disability.

[00:26:51] So that’s from the like, quote unquote, official academic literature that you’ll find in PubMed and all those other places. [00:27:00] Here is what our community has to say based on just some questions we asked in our Instagram stories. My caveat, I have a suspicion based on some of the responses we were getting when we asked people if they feel comfortable talking about mental health, that there’s some self selection happening when it comes to our Instagram stories.

[00:27:21] In other words, if you’re a person who feels comfortable talking about mental health issues and may have mental health issues that like discussing them previously has helped you recover from, I think that that type of person is probably much more likely to respond to our Instagram stories. So I’m not saying that these numbers are like a perfect indication of our community, but I think they give us like a pretty good idea of how people are feeling.

[00:27:46] So first of all, we just asked everybody like, how you doing out there in 2024? Cause it’s been a real rough year for like Erica and I, and the biggest category. So we have doing well, we have okay ish, [00:28:00] we have been better and we have struggling. The biggest category was okay ish. That was about 47%. 26 percent of you said you’ve been better.

[00:28:09] And a little over 19%. So almost 20 percent said that you are struggling. And about 6 percent of you are doing great. Awesome. We’re happy for you. More power to you guys. I am so proud of you. Tell me all your secrets though. Yes, please. And then we had a couple other questions that I think were kind of interesting.

[00:28:30] And these questions are the ones that sort of made me think that there’s some self selecting going on. Because the question we asked was, were you anxious or depressed before becoming a caregiver. And we were like leaning towards like clinically or you think you would have a clinical diagnosis, right?

[00:28:49] Like not do you feel sad sometimes or do you worry about stuff sometimes, right? Do you think you have a diagnosable mental health disorder? And over half said [00:29:00] yes, that they thought they did. So 53 percent 37 percent said no. And about 10 percent were really sure. So that’s a lot. That’s a lot of people who came into caregiving this life that we have.

[00:29:12] with mental health issues. I want to give the disclaimer too that when we went into this discussion two weeks ago, we talked about talking about this and full disclosure, everyone, I thought for sure that I did not have mental health issues before becoming a caregiver. I’m really glad I didn’t go on the record saying that because the more and more that I thought about just all this.

[00:29:40] kind of stuff and baggage that me as a human being brought to caregiving. I realize now I probably did have anxiety and depression. It just felt more manageable. And so I do wonder for the out there if that’s Maybe [00:30:00] something that like they might relate to is like, yeah, maybe we did all have like something that could have been diagnosed as clinical depression or anxiety, but we managed it better before we started experiencing things like extreme chronic stress and fatigue and everything else that comes with being a caregiver.

[00:30:20] Yeah. Oh, I probably should have said this before, but responses to these polls are like in the hundreds of people. The one that I just read about, like, were you anxious or depressed before becoming a caregiver? We had 300 people respond to that. We had about 300 people respond to the how are you doing question.

[00:30:37] This next question that kind of goes right along with what you mentioned, Erica, was, was your mental health. well managed prior to becoming a caregiver, kind of like regardless of whatever diagnosis you had. We had over 200 people respond to that and 85 percent, almost, 86 percent of you said, like, yeah, you had a pretty good handle on it.

[00:30:56] Then, getting to this one, [00:31:00] since becoming a caregiver, have you been diagnosed with a mental health disorder? We had 247 people respond to this, so a big number again. 78 percent of you said you have either been diagnosed with a mental health disorder or you are pretty sure that you would be diagnosed with a mental health disorder.

[00:31:18] We felt like we had to add that in because we’ll get to it later. Like there are a lot of barriers between caregivers and getting access to their mental health. So I didn’t want to like specifically restrict this to people who are like, yeah, I can hand you a paper that says I have depression or I have anxiety or I have PTSD or whatever.

[00:31:39] All right. And then one more that I think is like really important. I’m not going to read through everyone that we did, but we just made this statement basically, and then had you guys. respond to it. And again, 200 people responded to this. The statement is, I have mental health support needs and they are being met, not met, and not looking to have them [00:32:00] met.

[00:32:00] So exactly one third of people said you have mental health needs and they are being met. 51 percent said you have mental health support needs and those needs are not being met. And about 15 percent of you either have given up or just are not looking for help for whatever reason. Relatable. Relatable. So what do you think about that, Erica?

[00:32:26] I really wasn’t surprised by this. Again, just based on lived experience and that being echoed over and over in the way that people were showing up in our comments and our DMs and responding to all the questions we asked. Last week, it was not shocking. It makes me really sad, but I wasn’t surprised. And to me, when we think about the fact that we started this conversation with you, quoting a research article that explicitly [00:33:00] states that the wellbeing of children with disabilities is inherently tied to the wellbeing of their caregivers.

[00:33:08] And we have so many people in our country with masters and doctorates in public health, how is this not being addressed? How is there not a massive initiative to get caregivers better mental health support? That part to me is just like a no brainer. And so I have to ask, like, do they just not have the data or are they just not putting the pieces together?

[00:33:35] And if they aren’t, why is that? Yeah. So, you know, there’s more research on caregiver mental health than probably like most other topics pertaining to caregivers. I didn’t find maybe like one or two of these papers had like some more solution oriented things, but most of these papers didn’t offer that. A lot in the way of like, okay, how do we address these mental health issues?

[00:33:59] They were [00:34:00] just like, Oh, we should do that. We should probably help them. Okay. So how are we all struggling so much? I mean, again, I think we’re going to say some things that are like, going to feel really obvious, but before we get to that, I’m going to read again from the research papers that we found what the researchers.

[00:34:16] think our major problems are. And this is interesting because some of this aligned really well to like what you guys told us and some of it didn’t. So I have this big chunk from um, an article. I’m not going to read the whole thing, but I am going to read the two big points that they pulled out. There are at least two reasons to explain the reported high prevalence of mental illness in parents of children with disabilities.

[00:34:38] First, parents may make changes in their social and family life to accommodate their children as caring for a child with a disability can be a significant responsibility and increases the complexity and the scope of the parent’s role. So first of all, thank you for pointing out that that’s why we don’t solely talk about ourself as a parent and that there are a lot of other duties [00:35:00] rolled into being a parent when you have a child with a disability.

[00:35:03] Thank you, authors of this article. Okay, and then I’m going to skip down a little bit. Second, it is well established that caring for a child with a disability might result in pressures of financial hardship for the whole family due to increased expenses and decreased income. So this is not really a thing that we’ve talked about here, but we did talk about this in the careers episode, basically that like anytime you have additional financial strain on a family, almost universally, like everything in their family life gets worse.

[00:35:31] They have more stress, they have more mental illness, they sleep less, like their healthcare goes down, like all of that stuff. The financial aspect of managing a disability, either as an adult with disability, as a parent of a child with a disability, anything that gets touched by disability, especially in the United States, like cannot be overlooked.

[00:35:53] Like there is a financial hardship inherently linked to that, and that financial hardship makes everything [00:36:00] else that you have to deal with. that much more difficult. So I thought that was interesting that this research article picked up on that. And then the final sentence in this little snippet from this study.

[00:36:11] Overall, parents may experience grief, isolation, and considerable stress leading to mental health issues such as depression and anxiety. Ta da! Duh. Such a 90s thing to say. Not shocking. Yeah, and I mean, When we asked our community about this, it was really not that surprising the different responses that we received.

[00:36:36] So just a little backstory, we asked you guys in the form of a question box. What has the biggest impact on your mental health as a caregiver? Alyssa, do you want to give us some examples of how people answered that question? Yeah, all right. Lack of help and support from the community. All of the demands placed on me and my partner from all sources, so like society, from [00:37:00] medical institutions, education, basically everything.

[00:37:02] Trauma and lack of sleep. Stress, just all the stress together. The health or stability of my medically complex child. The constant busyness of life, so just regular appointments, therapy, other children, like household needs, lack of empathy from others, we had one person say the feeling that everything is just barely staying together, so essentially, you know, like, we had somebody else say it, the daily straw that breaks the camel’s back stuff on top of all the heavy existing trauma, so just that feeling that you’re just like one inch away from like everything crumbling down.

[00:37:39] The wear of constantly having to switch between tasks all the time from like household to like work to medical to parenting and then just the uncertainty of like when I’m ever going to get a break. Yeah, so I took all of these responses which I believe we had almost 120 different [00:38:00] responses appear here and I categorized those into themes.

[00:38:05] So things like caregiver demands, sleep, chronic stress and trauma I put in the same category because I feel like those are kind of hand in hand. Health stability. So that could be my child doing well or my child’s health being unstable. And then things like exercise, getting out, getting breaks, those fell into the category of self care.

[00:38:26] And then things like mental health support. So explicitly people stating I got mental health support or I got medication for my mental health. So overall, just the demands of being a caregiver is the largest factor that impacts our mental health as caregivers. In close second is whether or not we do or do not have support as a caregiver.

[00:38:51] That could be from family, from friends, so things like responses where people expressed having strained relationships. [00:39:00] That I put in the category of having caregiver support because I do feel like having good relationships in your life or not having good relationships in your life affects that. In third place was chronic stress and trauma.

[00:39:14] And fourth place was health stability. Tied with sleep though, which I think is not ironic when our kids health is unstable. Our sleep is also unstable and unpredictable. So following up at 7. 8 percent was self care. And then second to last was just, you know, getting help. So be that therapy and medication.

[00:39:39] And I think. At the very bottom was the financial restraints. So when we asked our community, a lot of this did somewhat align with the research that you found, but it definitely highlights the need to dig deeper because I think it’s really easy for [00:40:00] researchers to look at caregiver support and say, well, that’s a financial issue.

[00:40:04] But we know that it’s more than that. We know that having support can lead to our ability to do self care or to get sleep. So it’s really important, I think, for researchers to dig deeper when they’re doing this. And how do we do that? Well, you get caregivers involved in that research, okay? I think a couple of things.

[00:40:24] on that note about like the financial stuff is like one. Yes. A lot of this would be easier if people had more financial means, right? Like maybe you could take some stress off in certain parts of your life. If you had more money to be able to spend on like certain things, like even, you know, if you had someone to like help you clean your house, like all these little things, like, yes, having more money would help.

[00:40:46] with some of these problems. And I’m guessing is an underlying aggravating factor to some of these problems too, right? Absolutely. But I also was in a conversation with someone the other day, and this has come up with the whole, [00:41:00] even how like Katie Beckett and Julie Beckett and how all that got started, right?

[00:41:03] The idea that like, you cannot just throw money at this problem, because think about it, like, say like you had like a million dollars a year, like income or whatever. You would still be faced with the issue of, like, having to hire, and say you didn’t, like, go through insurance or whatever, like, didn’t go through Medicaid, and you’d have to, like, hire your own nurse that you trust to, like, care for your child.

[00:41:27] You’d have to train them. You’d have to, like, do all the stuff to, like, have them in your home all the time. You’d have to get backup for them. Right? Because they can’t work, like, 24 7, so you have to have multiple people now. You have to hope that those people, like, never leave you. Like, all of this stuff, it’s like, well, money would help, right?

[00:41:44] Like, you could do a lot of that, but it wouldn’t completely erase, like, the base need, which is just that there aren’t that many people that can care for our kids, and it’s really difficult to find and hold on to those people that can help support us, either in an in home caregiving capacity, [00:42:00] through, like, friends, through family, through, like, whatever.

[00:42:03] You know, there are these things that, like, you cannot just solve with money. Like, money is one of those, it’s like a lubricant in certain ways, right? Like, it makes certain things easier, but it’s not necessarily, like, the underlying component that makes something work or not. Yeah. I feel like you could say that broadly.

[00:42:21] That’s not just applicable to caregivers. You know, money doesn’t fix everything. It’s an old saying, and I think it, it speaks volumes. To really the need for every human to have a sense of community and for every human to have a sense of support in their life. Money can’t buy that. Money can’t buy a trusting relationship.

[00:42:41] Money can’t make someone a better employee. These things take community and they take time and well, as we’re about to discuss, time is not something that a lot of us caregivers have. Is it, Alyssa? It’s not. You know, one of the other questions [00:43:00] we asked, the point of it was to address what barriers we faced in obtaining and getting good mental health support.

[00:43:10] And I was a little surprised by the responses. Again, this was a question that we asked. We didn’t poll people. We asked everyone to submit their own answers. And it was really interesting to see that there was a lot of repetition in the responses. So again, this is qualitative data that we’ve categorized.

[00:43:30] By and large, 34 percent of people said that they just. didn’t have time to get mental health support. The next was cost, so kind of going into the finances of it, good quality mental health support, it’s challenging to find, let alone it can be more expensive. So it wasn’t surprising that the next largest barrier coming in at third place was just our inability to [00:44:00] find a therapist who is qualified to support caregivers.

[00:44:04] That showed up. over and over again. Just having a therapist who understands inherently what it’s like to be a caregiver so that we don’t have to spend Yet again, the time laying that framework out for them, right? The other things that came up were just having support so that we can make time to go and get mental health support, having the emotional energy.

[00:44:30] So sometimes doing the mental health work can be really draining and when you don’t already have, you know, much in your cup to pour from, that’s just asking for even more. We also had things like just accessibility, so whether or not they were able to get virtual appointments. If, you know, a mental health provider can see someone after five o’clock or on a weekend, just having an accessible schedule.

[00:44:56] The final one was insurance. So, our top four though, [00:45:00] just kind of going back, were time, cost, quality therapist or qualified therapist, and support or child care. Did any of those surprise you? No, honestly, no. Because I feel like you could even lump childcare in with time, right? Like, the reason we don’t have time is because we don’t have anyone to, like, watch our kids or whatever.

[00:45:22] Definitely. Now, here’s something interesting. I heard from at least a couple of people who sent us messages and emails that, like, I want to caveat this, like, I think that there is some truth to this. And then I think also that, like, there is some truth to the fact that like, some people literally do not have free hours in their day.

[00:45:41] But someone did point out that, like, the time thing is sort of a little bit like one of those things where like, You could potentially be procrastinating on getting help for yourself. It’s a good excuse to be like, I don’t have time, so I don’t have to do therapy, or I don’t have to do this, or I don’t have to do that for myself.

[00:45:58] I am [00:46:00] gonna go ahead and say, like, for some of this, there’s probably underlying stuff as to, like, why we’re making those excuses for ourselves, but, like, yeah, that’s probably true. At the same time, I’m also not going to be the one to tell you, like, who does or doesn’t have time because there have been points in my life where I have literally not had time to do anything except for just survive for a while.

[00:46:21] And that goes on longer for some of us. then I think we would like to admit. So hard out there. Totally. I’m not going to make that proclamation for anyone. But considering that time was one of the biggest, I think that that’s worth noting that some of it may be like less time and might be more of like priority basically on like what you think you need at any given time.

[00:46:43] Interesting. You say that, Alyssa, because moving right on to The question we asked our community regarding the best advice they’ve received from a mental health professional. Can you believe that the most popular [00:47:00] answer was some version of prioritizing yourself? We need to hear that. No, that that doesn’t surprise me at all, because I think there is this like streak, particularly in caregivers.

[00:47:14] And some of it is like. It’s not conscious, right? Like some of it is like the trauma response again. Oh my God, if we are not on high alert, if we’re not doing absolutely everything to like the best of ability for our kids, or if we’re not like all strung up all the time, worrying about all these like coulds, shoulds, whatevers, that something bad is going to happen to our kid.

[00:47:34] Because at some point in our life, for most of us, that’s That exact situation has happened, whether or not we could control it, that situation happened. Mm hmm. Yeah. So I do think we tend towards that to the detriment of ourself. And I think what a lot of these therapists are getting at is that like, actually, sometimes you have to just like, let go of that for a minute and like, prioritize yourself a little bit.

[00:47:58] What prioritizing [00:48:00] yourself looks like for different people? We’ll get into that like here in a second. Um, we’ll talk about things that helped with all of your mental health, because I think it is very individual about like what that looks like. But at the same time, it does come down to like, you do have to take care of yourself at a certain point to get your mental health back on track.

[00:48:19] I don’t say that to like shame anyone, like, Oh, if you’re not doing it, then you’re not taking care of yourself. I understand that there are times when you can’t take care of yourself. But I’m also saying if you don’t take care of yourself, you can’t take care of your mental health. So. It goes hand in hand.

[00:48:32] I think this speaks volumes to the fact that what I’ve personally experienced is that I need someone to tell me to do it. I need the reminder. I have put myself at the very bottom of the prioritization totem pole. My needs come last because I get joy from making sure my kids are healthy and making sure everyone’s taken care of, but so [00:49:00] often I cannot fully appreciate that joy when my own mental health is suffering because I’ve put myself on the very bottom.

[00:49:08] So it’s just sometimes as caregivers we need to be reminded. To prioritize ourselves. And sometimes you need someone who knows you to, like, use your impulses against you. Like, at my lowest, I had my husband essentially tell me, like, I cannot do this without you. You need to pull yourself together because, like, we’re not gonna be able to do it.

[00:49:27] individually, like take care of these children. Yeah, like our two kids. And I need you to be healthy to like do it with me. And that was like one of the catalysts for getting myself back in order. And even then it’s like kind of sad because it’s like, Oh, like you didn’t totally do that for yourself. You had to have someone else tell you that they needed you to be able to do it.

[00:49:48] But I mean, I think that’s true. I think a lot of us like sort of have that streak, whether or not it’s like innate, it’s a thing that you just develop through this life. Yeah, agreeing on [00:50:00] that theme of the best advice given to caregivers. Many of you just reported simply having someone validate what you’re going through was huge.

[00:50:11] Just that was the next biggest piece of best advice. So, Alyssa. What do you think when you hear caregivers say that having a professional validate their experiences, what does that bring up for you as being helpful? I mean, it brings up the same thing for us here when we’re like, we have to have research that like validates all of our experiences.

[00:50:35] Yeah. Yeah, I guess it’s just sad. Like it’s kind of ingrained in us that like we spend a lot of time second guessing ourselves. And again, I think a lot of experiential things have sort of developed that trait in a lot of caregivers, right? Like a lot of second guessing in the medical system, a lot of like going back and forth through like educational systems, a lot of what we’ve talked about earlier, where like people in society are like, Oh, are you sure you need that?

[00:50:57] Are you sure you need this? Are you sure you have this problem? And [00:51:00] then we spend a lot of time going around in circles like, Oh, maybe it is in my head. Maybe it’s not real. Maybe whatever. And then having someone else outside of our brain be like, no, it’s a thing that matters a lot. And for whatever reason, most of us seem to need that.

[00:51:17] Yeah. I think someone else just telling me what you’re going through is hard and you have the right to have feelings about that. And you have. the right to work through those feelings in a way that is helpful and healthy for you. That has been a tremendous source of just like comfort and strength for me.

[00:51:40] I just want to read through a few more of these. This was our best advice from a therapist. Allowing myself to be sad without judgment. Validation again. Mostly her validating everything I’m doing. Nobody else acknowledges how tough it is. This is me giving you like a arched eyebrow, all of us, collectively.

[00:51:59] [00:52:00] We’re all in this boat together. We’re all like needing the same stuff, basically. Self care can look like anything. She forces me to complete actual self care once a week and holds me accountable. Mmm, accountability. She challenges my feelings of guilt with facts that it was not in my control. Circle of control.

[00:52:19] It feels hard because it is hard to practice radical acceptance over and over. We’re going to do a whole episode on this at some point, but yes, not holding it in and talking about it with a trusted friend or a spouse, recognize what you can control or fix and put aside what you can’t for now. But Your actions are reasonable and based on history, you’re not irrational.

[00:52:40] Ooh, love that. Talk about turning into yourself for that data. Like, hello, look at what you’ve been through. Look at the patterns, look at the history. Of course you feel this way. And here’s the last one, which is our lead in to our next section, but someone said a therapist told them [00:53:00] that medications help.

[00:53:01] On that note, and I think this comes back to the stigma a little bit, because we heard some of this when we were talking about, like, people talking about barriers, is one of the things that they still feel very uncomfortable talking about is medication. Like taking medication for mental health issues and I want to be very clear again that Erica and I are not mental health professionals or doctors or whatever so I cannot tell you to take this or don’t take this or whatever but I can say that a lot of people told us that taking some type of medication was very instrumental in improving their mental health.

[00:53:38] And I would also like to say, as a person who was very resistant to taking a medication for a long time, since I do not have the option of avoiding traumatic scenarios in my life with my kid, because she has medical emergencies occasionally, she has seizures every day, she has these scary things that happen to her that we just have to deal with, we cannot avoid it.

[00:53:59] Taking [00:54:00] medication has made both getting through those instances and then also recovering on the back end much faster and easier. Again, I cannot tell you that it’s going to help you or not. I know there’s a lot of side effects to a lot of these, but I do still think like broadly societally, there’s some resistance to the idea of medication.

[00:54:21] But in our situation, when you talk about like controlling the controllables, medication might be one of those things you can control. Just throwing it out there. Yeah. Uh, I had a provider once help describe to me the benefits of using medication by referring to it as adding a tool to my toolbox. And that comment actually showed up in our responses regarding like mental health factors and what’s been beneficial.

[00:54:51] You know, I think as caregivers, we come into this life with a set of tools that have been really helpful for us up to that point. And when we become caregivers, [00:55:00] I personally experienced having to focus on learning a whole new set of skills that really required a whole new toolbox. There for a while in that toolbox included medications.

[00:55:13] I needed an extra tool to help me get some clarity and really make space for new tools, new coping mechanisms, new ways of thinking and learning how to like adapt through chronic stress and learning how to really, as you stated Alyssa, bounce back from the lows and bounce back from honestly the reoccurring trauma.

[00:55:39] So I think that’s what I’d encourage people to try to think about in terms of medication is that it’s just another tool. It doesn’t have to be long term. It really helped to have someone, for me, reframe it in that way because I think, you know, a lot of people are afraid of like the long term impact of medication or, you know, [00:56:00] the idea that it might have to be lifelong and that’s not necessarily the case for everybody.

[00:56:04] And it’s not a negative thing if it is, too. Again, it’s just an extra tool. When we think about gathering all the resources we can get for our children to be successful, it’s another resource for us. Thank you. I have talked about it with a lot of people, including my medical provider. And again, this is not a conversation you should really be having with us per se, but you should talk to your medical provider and see if it would be helpful for you.

[00:56:32] But just sharing personal experiences. One thing that they talked about was like taking medication. particularly if you’re going to do it in the short term. It’s not even so much like mood regulation per se as kind of just what you talked about, Erica, in giving you space, taking one stressor off of your life, if it helps that way, so that you can build better coping mechanisms that aren’t solely based on like your anxiety and trauma responses.

[00:56:59] [00:57:00] building new patterns into your life that make it easier to deal with these other things. So it’s just something to think about. I just, part of me is like, when we’re talking about stigma, there is still a stigma around medication. And I want to like, if it’s a thing that you need to get through, that’s okay.

[00:57:18] We give our kids things that ideally I wouldn’t have to give my kid like multiple seizure medication today, but guess what? It’s not good for her if we don’t. Love that. Yeah, that’s a really great point. Speaking of things that like, you need to hear, I needed to hear that. That was a great analogy. Thanks, Alyssa.

[00:57:37] You, you’re welcome, Erica. Now, when we wrote all these out, I just remembered that I put a little note at the bottom of this list and I wrote, do we spend a lot of time gaslighting ourselves as caregivers? Because like, you got to recognize and call something what it is before you can fix it. And I feel like that’s, what’s happening.

[00:57:55] A lot of us are like. I don’t think that it’s the thing that we think that it is that we have [00:58:00] all this evidence for until someone outside of us is like, and then we’re like, Oh, yeah, of course it is, obviously, just again, that constant second guessing of ourselves. But leading from that medications help thing, I’m going to hop over to, you know, We’ve talked about the mental health issues we’ve had.

[00:58:19] We’ve talked about the barriers. We’ve talked about best advice. We’ve talked about a bunch of research. What helps, right? Like what helps with our mental health? And we’re going to get to therapy here in a second. Because I think therapy does help. A lot of you told us that therapy helps. A lot of you told us that therapy helps with the caveat that it depends on the therapist and whether or not they’re trauma informed.

[00:58:44] Because a lot of you said traditional therapy, quote unquote, wasn’t super helpful without at least some trauma informed aspect. So that doesn’t even necessarily mean EMDR, but like, without someone who like, knows what you’ve gone through basically. [00:59:00] Someone even Use the word disability informed and I was like, yes, this is what we’re talking about.

[00:59:09] So I would go so far as to say trauma informed and disability informed being important. Absolutely, just understanding the actual barriers systemically and otherwise that we’re facing. And I do think that’s where the disability informed comes in over the trauma informed, right? Because we’re not just dealing with trauma responses, we’re also dealing with systemic problems that we can’t fix.

[00:59:30] So whatever therapy solutions you’re going to give us have to fit into the parameters that we don’t have any control over on our life. But it also goes with, like, can you find a therapist who’s, like, in your community, who understands your community, who’s, like, your person. A lot of people are like, oh, people told me therapy and I tried therapy and it didn’t work.

[00:59:51] A lot of you were also like, therapy was amazing. I found this therapist and like, she gets me and she understood me and like, we developed a relationship and I could be safe and seen [01:00:00] and understood with her. That’s the kind of therapist that you need to get like actual help in therapy, right? Because you can’t go to someone and like, spill the like worst moments of your life comfortably and safely with a person you don’t really like feel seen and understood with.

[01:00:18] So I don’t have all the answers when it comes to like how you find a therapist or whatever, but we should note that Amanda Griffith Atkins has a list on her website and we will link it in the show notes here, of therapists who work with parents of disability, like specifically. So either they have a disabled child or that’s the population that they primarily work with, but people who are trauma informed and disability informed, for the most part.

[01:00:45] People who can get you, because that’s huge. Well, we’re gonna wrap this up today with a theme that’s really important to both of us. which is really just the power of [01:01:00] having a social network as a caregiver and how beneficial that is to our mental health. This is something that Alyssa and I have hours upon hours of voice messages back and forth to each other just talking about.

[01:01:16] It’s something we’re both really passionate about. It’s something we believe in wholeheartedly that we need community. We need a network of people who get it. Essentially, it might be the most important piece for me personally when it comes to my mental health. How about you, Alyssa? Agreed. And also, I think most of you in the community agree because when we asked what’s helped your mental health, like again, we talked about therapy.

[01:01:46] We talked about medication. We talked about exercise, like all these kinds of things. Those are all things that are super beneficial. Those are all things that are really beneficial to me personally. But, like, what you guys told us, number one, let me just [01:02:00] read some of the responses. Friends to talk to who get it.

[01:02:03] Communities like this one where caregivers feel seen, understood, and less isolated. Listening to medical mom podcasts. Peer support. Basically, just the idea that, like, there are people that you’re doing this with, that you can, like, share frustrations with, you can share ideas with, you can share solutions with.

[01:02:20] That’s it. That is the thing that’s like helping most of our mental health. And I also feel like that’s the thing that it sort of like gets glossed over in research because I think it is hard to quantify in some ways. Yeah. And let’s put a pin in this because side note, There’s some research happening elsewhere that may be able to quantify some of this later.

[01:02:41] But anyway, we’ll get back to that. But that’s it. Like, that’s what it comes down to a lot. Like, who is around you? Who do you have around you to support you? So as we wrap up here, we wanted to leave you with solutions. I wanted to leave everybody with like more [01:03:00] specific solutions than I think we have right now.

[01:03:04] The problem is like, okay, so let me just read some of the research. And this is again, not from us. This is from like published research papers. A lot of it is reiterating the same stuff over and over again. Federal and state programs support children with developmental disabilities, helping with communication, education, housing, and employment.

[01:03:23] There is much less support for parents, most of it coming from family and social networks. So this research is basically just reiterating that like, From institutions, there’s almost no support for parents and caregivers. Your support, right now, at least, is mostly coming from those people around you, your community.

[01:03:42] Okay, another one. This research is ongoing, but parenting self efficacy and family functioning appear to be related to a child’s diagnosis, as well as symptoms of paternal depression. This suggests that in order to improve parental depression, We need to support parents self efficacy in the family dynamics as a whole.[01:04:00] 

[01:04:00] Again, treating the family as a unit, giving parents supportive tools to actually be able to manage the circumstances that they find themselves in. One more parental depression goes largely unidentified and untreated and supports for parents of children with special needs. remain limited. Clinicians and pediatric health systems should implement parental depression screening programs in clinical settings that treat children with disabilities and provide resources when symptoms of depression are identified.

[01:04:29] This is probably a conversation for another day, but I think I’ve said it here before in that no one at any point at all in the 56 days we were there, every once in the NICU talked to me about mental health. Not a single person. I may have been given like a sheet in my stack of stuff to sign up for Medicaid from the social worker, something that said stuff about mental health, but no one sat down at any point and talked to me about it.

[01:04:56] So when we’re talking about systemic solutions, like that would [01:05:00] be a big, easy one. Right there. Yeah. Like, why are we not helping parents at various points, but also like, you know, that they’re going to need this coming out of the NICU, especially with complex diseases. Like, why are we not implementing that there?

[01:05:14] You know, what was wild for me, like in the NICU, no one ever handed me one of those postpartum surveys. It wasn’t until like, you know, when I finally went to my OB follow up six months later. Did I get a survey asking about postpartum depression? Erica, I didn’t get one there. I didn’t ever get one from my OB.

[01:05:36] I didn’t get one until Gemma was like a year old at one of her pediatric visits. Oh my gosh. And like, you know, nurses know, doctors know, these parents in the NICU are Going through some shit. Okay, like they are deer in the headlights. We are freaked out. We are overwhelmed Terrified scared. How is it that even the [01:06:00] social workers didn’t sit down and say, how are you?

[01:06:05] What do you need? What are your feelings? Let’s talk about that. How is that not a thing? we are living in the 21st century and We are living in the 21st century and The research by and large supports maternal health is directly correlated to the well being of child health. How are we not better supporting our moms in the NICU, our dads in the NICU?

[01:06:30] Sorry, this is a soapbox for another time. I have one more to read and We’re kind of going to touch on that just a little bit. Like, okay, these systems aren’t supporting us. These institutions aren’t supporting us. People outside of this community are not supporting us. So who do we have? Here’s the last one I’m going to read.

[01:06:49] Helping parents feel more capable and effective in caring for their child with special needs may reduce the risk of depression. A simple word of acknowledgement and encouragement can make a huge difference for a [01:07:00] struggling parent. Enhancing access to increased social supports through respite services or support groups may help parents manage their own stress and feelings of isolation.

[01:07:09] One mom of a child with Down syndrome and ASD described her social network to us as being worth its weight in gold. Every family caring for a child with a disability should experience that same sense of support. That’s it. Mic drop. That’s the thing. So here’s where I’m not trying to like toot our own horn too much, but I am a little bit.

[01:07:32] Toot the damn horn. This is what we’re doing. And I don’t mean me and Erika, not what Erika and I are doing, but like us as a whole developing these groups where we can reach out to each other, where we can share stories, share information, share experiences, just talk to each other, like as caregivers, one to one to like get it.

[01:07:52] Building community. Not even in caffeinated caregivers, but wherever you’re building that community, like online, in [01:08:00] person, whatever, that’s it. Like that’s a lot of the support that you need. And I don’t mean like institutional support. We need all of those other things too. But to get started, you just need to be in community with other caregivers.

[01:08:13] Like we all need that. It’s not the only thing that we need, but it’s a big cornerstone of what we need. We need each other. Hmm, Alyssa, there’s just nothing more that we can say than that. On that note, how I’m gonna wrap up today. is very similar to how I wrap up every other day, but I’ve decided to change the ending mantra for this.

[01:08:38] Oh, I know. Are you ready? I’m excited. Before I say goodbye to you for today’s episode, I want to say this to you, Alyssa, and to everyone listening. May the love and support of your caregiving community be with you. You, me, everybody, everybody, whoever has sent us a message, an email, a comment, not even just to us, but like to each other to [01:09:00] share with each other.

[01:09:01] That’s it, man. Yes. Keep it going. It’s just like such a beautiful thing and I’m so happy that we have each other in this. So thank you everyone. May you feel that love. Until next time. Bye bye.