Transcript
Justin Bajema
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin bajema.
Allison
Good morning. Justin,
Justin
Good morning. Allison, how are things going over there?
Allison
You know, at this moment, okay, Sean and I were actually supposed to be in North Carolina, right now, at the fanconi anemia yearly conference, right? And made the decision to not go this year, which was a hard decision. I was supposed to lead some support groups for caregivers. He was going to be on a panel. You know, these are our people, right?
Allison Breininger 0:41
But we just, we made the hard decision because, for a number of reasons, I think that, you know, the last, I don’t know, I was gonna say weeks, months, 13 years, right? Like it’s catching up with us. We’re tired after that Mohs procedure that was so heinous a couple of weeks ago. It just really knocked us out that in addition to, two days before then, we found out that a dear, dear friend, of ours, from the FA Community, had passed away. And it just felt like a lot. And so having this big conference on the calendar was just really kind of weighing me down. And at one point I was like, I don’t have enough energy to even drive to the airport, let alone, why across the country present, be, you know what I mean? Plus, there’s all these, like, you know, you go to sessions that are basically like, you know, you’re doomed, right? You know. And you see the people like, you see, who has passed away in the last year, right? You know, all of these, it’s a very multi-layered experience that, you know, is a lot and so anyway, we made the decision to not go, which is hard in a lot of ways, but I think was the right decision. So, yeah, so we had a kind of quiet weekend because we were supposed to be gone. Yeah. So, so, yeah, I think we’re doing all right. We’re trying to continue to take things slow and rest as much as we can, and all of that in between things, and just lean into this like It’s fall now right, lean into the sort of okay, where it’s time to slow down, time to rest more, so that, you know, we’re trying to do that and trying to take care of ourselves as best we can. So that’s what’s going on here. Okay, yeah, how about you? What’s going on over there?
Justin Bajema 2:32
Doesn’t feel like a lot’s going on, which, I think is, which feels good.
Allison Breininger 2:37
Great. Love it.
Justin Bajema 2:38
Yeah, as you said, season starting to change. And so looking towards it feels weird, like falls hitting, but also it’s like, I’m looking to winter and like the like, hibernating, like we have a whole season to get through before that.
Allison Breininger 2:53
Like you want to be hibernating.
Justin Bajema 2:54
Like, I feel like that’s coming right up, and it’s, yeah, I don’t know, so I don’t know what falls gonna look like, but yeah, things seem to be quiet. Sarah continues to be doing really well, great. Um, we’re just doing good. So it’s, yeah, love it. Not a lot to report, and I think that’s good.
Allison Breininger 3:09
Yes, every time that happens, it’s just like cause cause for celebration, you know, we’ll take it. Yeah, we’ll take it well, either of us are in crisis. What are we gonna talk about today?
Justin Bajema 3:21
Yeah, so, something that I’ve been kind of rolling around in my head a little bit is, there is this, I don’t know, sort of this idea of this, I guess, myth of this, like, ideal caregiver, right? So I think that, and I think this is true for a lot of aspects of life, but we have in our head this kind of idealized version of what we should be like, so like, of what this, what a perfect caregiver is. And I think that often we have this picture in our head, and we are constantly comparing ourselves to that, and seeing how we’re falling short, feeling like we’re not doing good enough, and just feeling like we’re there’s like, a standard that we’re not meeting. And that’s not great, sure isn’t. And so I think we can, it would be great to talk about, you know, maybe where that idea comes from, and kind of how we can move past that, or how to relate to that a little bit, and kind of help maybe break that cycle a little bit.
Allison Breininger 4:13
Love it, yes. Because one of the very first things I think of when you say that is, not only is that hard for us to stick to, like, yeah, maintain. But it’s also like, if I look at you and I’m like, Oh man, Justin is the perfect caregiver. And then then I’m comparing myself to others, right? And then if we’re all sort of holding up this facade of like we’re so perfect, and we’re just doing all of this, then we’re holding ourselves to this unrealistic standard, And nobody’s being honest. So, yeah, great. Let’s think this is a great thing to talk about.
Justin Bajema 4:50
So when I, like, bring up, like, the ideal caregiver, this, like, yeah, image. Like, what does that bring to mind for you? I guess when you. what does that look like?.
Allison Breininger 5:02
Well, it’s funny. One of the very first things I wrote when I started The Negative Space, it was a blog back in the day, was a caregiver, job description, position description, and it was one of the most popular things I’ve ever written. And it was like, pages and pages and pages long, right? And it was all tongue in cheek, right? Because basically it was, like, you must be an expert in, and had like, 75 things, and, you know, you never get vacation and you are not paid, and this is, you know what I mean. And so part of it is that, like that, it’s this picture of that we’re not trained for this. Like, we know, none of us come into this with, well, some people do, but, like, with experience, right? And yet, we’re supposed to do this all really well, right? Really well. So when I, when I was thinking about this, I was like, okay, what are some, even some adjectives, like, you’re like, what is the perfect caregiver? And the very first one I came up with was uncomplaining, right? Like, we’re just supposed to just, like, do it, not complain. I even wrote down, hashtag, grateful, hashtag blessed, right? Because, again, the reason that I started The Negative Space originally was because I was at, actually this conference that I just was okay referencing, and they had a, I know I’ve told the story before, but it was like a lunch or this partners of people with FA, yeah. So this very niche group. I was like, these are my people. social worker. was like, how’s everybody doing? And I kid you not, everyone who spoke was like, I’m just so grateful that I get to have this role. I just feel so blessed that I get to care for my person and it was this moment for me, this crystallizing moment of like, what is happening? Like, why do these folks feel like this is the only thing they could see, say, right? Certainly, that is a component, potentially, right, not for everybody, but for some people. They might feel really grateful that they get to help their person this way. They might feel, you know, whatever, but that’s one component, yeah. And so when we lead with that, and that is what we’re we are expected to say we are, you know, either because that’s what we think, or that’s what society has told us, or whatever, like we’re only telling a tiny sliver of the story, and then the repercussions of that are huge. Because if I’m sitting there and I’m like, actually, I think this is hard and I hate it, and everybody else at the support group says,”I just feel really grateful”, then I’m like, What is wrong with me? Exactly, yeah, right, that I don’t feel just grateful that I have all these other words that I want to use. So I think that’s a huge piece. I’ve got lots of other adjectives, but I think that that’s a great place to start. Is this, like, sort of uncomplaining, grateful, feeling blessed component. And I’m wondering, like, have you, you know, what has been your potential experience with, like, hearing others saying that, or are you feeling that? Or, you know, are people expecting you to say those things, has that been a piece for you?
Justin Bajema 8:03
Right? I don’t feel the like people expecting me to say those pieces as much, but I certainly just the thought that, like, you know, maybe it’s like imposter syndrome kind of sense, like, I just don’t feel like I’m doing this as well as I should be sure, really feeling like I can’t I’m not manage everything, every managing everything well enough, and just treading water when I should be, like, helping us make progress, kind of thing. And so, yeah, I think when things were rough. I think it is something that I did, I struggled with feeling like I wasn’t doing enough that I was because it felt like it took everything I had just to keep us afloat, let alone try to make progress on anything, right? So that’s kind of where it rings true for me. Yeah. The other thing that kind of relating to this here, you know, certainly there’s the comparison piece of, and I think we did an episode about comparing comparison, and that would be great to reference as well. But yeah, we see, whether it’s on social media or, like, in your case, people talking at a support group, like we’re seeing people putting their presenting their best, or presenting what they see they should be doing. And you’re not seeing the day to day, the in the trenches, all of that, and you’re comparing that part of your experience, your worst parts, to what you’re the outward bit you’re seeing of other people. And so I think it’s important to recognize that and not get too hung up on comparing what you’re seeing against what you’re experiencing.
Allison Breininger 9:57
Yeah, yeah. My brain is grappling with this because, because I think there’s a couple, and I think really, I mean, it boils down to, like, this is exactly why I started The Negative Space, is to, like, shine light on the realities of caregiving. And to be able to be a person who’s out here saying, this is actually really hard, it’s really hard, and I’m imperfect, and I don’t always like this. In fact, I often don’t like it, right? And so, so the thing my my brain, s sort of grappling with is, is this sort of like, do we go down the path of like, I’m not the perfect caregiver. I want to be better. I feel like I’m not living up to expectations versus I, and maybe they’re the same bucket, versus like I feel like this is what I should be saying about how I feel about this role. Does that make sense? Yeah. And I think all of it is like, there’s a reality, and then there’s what we feel like we should be doing, should be saying, should be, right. And I think an interesting thing, like, I think about this a lot, is that with parenting, I feel decades ago, it was sort of like nobody talked about how parenting was hard. It was just like, I’m so blessed to have these children, right? And I feel like there has been a culture shift around parenting, around like, yeah, parenting is hard. Whoa, I’m tired. I never sleep. I do this drawing, you know what I mean, like, and I’m waiting and hoping that caregiving can be following in the footsteps of that? Does that make sense? That is, um, and so because I and I think it’s getting there, but I do think that there’s this piece of like, we still feel like, oh no, I need to just say that. It’s yeah, grateful that I get to do this, and I’m doing it all well and whatever. And I think that when we can pull back that curtain and say, this is hard, I don’t think I’m doing it well. I know I’m dropping balls. I, am exhausted. Then you’re able to, then everyone else is like, Ah, you too,? That’s what I thought? I thought it was the only one, I thought I was the only one who felt like they were doing. I mean, you hear all the time, right, people saying, I don’t feel like I’m doing any part of my life. Well, right? And so, but they say that
in these whispered voices. And if we could all just say that, then what does that do to all of us as caregivers? We can be like, oh, really. I’m not the only one, right? Yyeah. How does any of that sit with you?
Justin Bajema 12:34
Yeah, I mean, it it feels like something too that, I mean, it’s, I don’t think it’s isolated to caregiving. Like, I think a lot of ways in life, there is this sense that we put on this facade, or we we’re seeing others people’s facades, and we’re not seeing the reality. And the more we can get past that, the more we can like, I don’t know, make progress, or feel connected, or feel seen, all of those things. Yeah, so I think that that’s important. I think the work you’re doing and to try to change this is great. Like to have that as a purpose, to make it clear that, you know, it’s okay to admit that this is hard. It’s okay to be vocal about that. It’s okay to say that, you know you’re struggling, and that builds this impact among the people who are hearing that and that they can, you know, say that and all of that. So I think that’s great. Um, another thing about this, I’ve been kind of chewing on a little bit, is like, where, how did we get here? Where did this idea that as a caregiver, I have to be a certain way? Where did this, that ideal come from, right? And ot on like, where did it come from? And then how do we learn that? Because somewhere we picked that up. And I think that’s an interesting piece, how we pick it up, because caregiving is not something that’s talked about a lot, right? So where are we learning that? But I think, as far as you know, I don’t know where the idea came from, but one thought that I had is that caregiving, historically, is one of those areas that it was women that were doing that work and kind of in general, for a long time. All of the work that women do has been undervalued, not acknowledged, unappreciated, just taken for granted, all of that,. And I think I wonder if, if caregiving, being traditionally part of that is kind of, there’s some roots there, as far as why it’s not something that you can admit is difficult. It’s something you’re supposed to just do dutifully and not complain about.
Allison Breininger 14:40
Yes, yes. So well said. And I think that I’ve heard this before that if, if we like, if I’m a supporter of a woman or a person who’s a caregiver, and I can just say, wow, you’re just doing such a great job. Wow. You know, blessed, grateful all the things I don’t have to help. Right? Once I say, like, oh, that sounds really hard. That is sort of opening up this door that says, sort of like, ooh, we should change the systems. I should be helping you. I should be whatever, but if we can just keep it in this clean little box, right ,it’ sort of, I’m sure you’ve seen all the memes of the like the hand reaching out, and that’s like, help me. And they’re just like, You’re doing a great job. High five, right? And then the hand goes to dododododo, right? If, that’s all we do is just be like, good job. You’re doing it. You’re so strong. Keep on going. We can just go about our lives and be like, they’re doing a great job. They’re so strong.. And we don’t have to actually, like, face the fact that, like, oh, our person is suffering. The system is broken, all of those pieces, right? And because I think about, when you think about toxic positivity, and you think about why people like to say things like, but well, at least, at least you’re, you get the gift of caring for your spouse, right, right? It’s because they feel uncomfortable. They’re trying to change the narrative, because it’s uncomfortable for them to think, like, oh, at some point I might be in that position. Oh, right, my person might be sick. Oh, at some point, you know, like, they don’t want to, they don’t want to think about that, It’s uncomfortable for them to hear that this is hard, right? And so they’re like, taking care of themselves by being, like, trying to put a little pretty bow on it. Because if I say to somebody, this is so hard, and I’m so tired, and I just don’t even know if I could just keep doing this, right? That’s hard for someone to hear, yeah. And so they try to fix it by not fix it for me, fix it for them by saying, well, Allison, at least, at least you, you know, have lots of support. And then they’re like, fix that. Then they get to, like, go about their day and feel better, right? And so I think that there’s that piece of it is, it’s the listener trying to, like, clean it up for themselves. Does that make sense?
Justin Bajema 17:07
Yeah. And I think that that sort of feedback loop then feeds, you know, the caregiver hears that and has the response to that and feels like oh, I’m not supposed to, like, be saying that this is hard, saying that I’m struggling like I’m supposed to, you know, say that, you know, this is I’m grateful that I get to do this, or, you know, all, whatever it is that, yeah, it reinforces this, like, idea that how I’m feeling about it isn’t how I’m supposed to be feeling, which is not not good in what we need to break.
Allison Breininger 17:45
Yep, yeah, yep, exactly, exactly, yeah. I mean, it’s like we, I think we did an episode right on toxic positivity, yeah, right. So same, right, like, that’s we need to break that cycle and be able to let them, because not only do they feel like this isn’t what I’m supposed to say, maybe they’re like, Okay, well, I still feel tired, yeah, however, I’m not allowed to say that like this is not a safe space. Like I don’t get to say to my cousin anymore that I’m tired, because they’re just going to shoot me down, right? You know. So either the caregiver can be left being like, oh, something’s wrong with me, because I’m not supposed to say this. I’m not supposed to be saying that I’m tired and this is hard, or they can be like, Well, I am tired and this is hard, but I don’t get to say that out loud, because nobody they’re they’re just going to shoot me down and talk right side me, you know. Either way, it leaves a person feeling unseen, unsupported, and like their truth is not valid.
Justin Bajema 18:49
Yeah. I think something else you mentioned was kind of how this relates to, like, the systemic issues we have with caregiving as a thing, and if we as a society or if society is kind of telling caregivers that they need to feel like they should be the certain way they need to be acting this certain way, it’s kind of this way of, like maintaining the status quo, of having an incredibly broken system that just doesn’t support caregivers, and, by doing that, or as a I don’t know, group of people don’t have to acknowledge the brokenness in the system. Don’t have to, like, try to fix it. And yet, that’s not who is that helping? Right? That’s not helping the caregivers, right? That’s not helping the people who are going to be caregivers someday and encounter this broken system that’s not helping the people we’re caring for because we’re burnt out. We’re not going to be able to do a thing, and that’s not helping us, because we, as we often say, should be able to like, feel fulfilled and whole, just because we are human. Yes, right? And so. So I just think that’s interesting, that there is this somehow we’ve gotten to this point where there’s yeah, this I should feel this way, I should act this way. I should be doing things this way. I shouldn’t feel this way. I shouldn’t feel this way. But that’s not helping anybody, right?
Allison Breininger 20:15
100% I think that it’s because helping us, like caregivers, are providing billions and trillions of dollars of free care, right, right? Like, if you look back at, you know, you think back to our last conversation with Nicole, yeah, right, Caring Across Generations. And you look at some of those statistics, like, we, we’re providing the backbone, yeah, of this society. And if we all, like, poof went away, like, systems would have to be put in place to care for all these people, right? Which costs money, and we’re all doing it for free, right? So systemically, like, big brother, why is it not happening? Yeah, right? I think that it goes down to money. Yeah, probably. And it’s just like, let’s just keep these, these people doing this thing because they’re doing it for free, right? Let’s send the people home from hospital, right? Like, yeah, you know, all the thing gross, right? Yeah, this, like, gross look on your face and it’s just not good, yeah? No, it does not feel good, right? So I think big picture, that’s what’s happening, yeah, right. I think smaller picture, it’s about, it’s about people’s individual discomfort, right? Okay, right? Just that it, it feels hard for me to hear you say, This is really hard, and I’m like, they don’t like the way that makes me feel, like, how am I supposed to help him? And what if that’s me someday? And gross, right? So I think individually, it turns into more about people’s individual discomfort, and we’re not good at sitting with people in their pain, and we just want to clean it up, or we don’t want to clean it up, fix it. We just want to, like, make it go away. We want to put a bow on it. And right? So I think that’s the more individual piece. And then there’s the bigger systemic piece, you know, and then everything in the middle, because even in the middle, middle, like, if you think about, like, health systems and whatever, that’s going to come down to dollars as well, right? Like, yeah, do we have the money? Do we have the infrastructure? Do we have the whatever to help people?
Justin Bajema 22:30
Yeah, that’s good, or that’s bad, but kind of terrible digging into kind of what’s going on here, yeah, yeah, yeah. I wonder if another piece is that we live in a world that it is that for whatever reason, it’s uncomfortable, it’s difficult, being vulnerable is not something that’s like, right, easy to do and we are conditioned to want to protect the emotions and feelings of the other person in the conversation, kind of, right?, To not, like, dump on our problems onto other people, sort of thing, to keep things like light, upbeat kind of thing. And that if we live with those kind of pressures, it just doesn’t give us the window to open up and it’s uncomfortable. And I’m not saying that to blame caregivers for you’re not doing this, and it’s your fault that you’re not being vulnerable. You know, there’s all it’s a whole weird world we’re living in. But if we lived in a place where conversationally, and certainly this isn’t, you know, you’re not going to be the checker at the grocery store. You’re not going to, you know, go off on all of this. But, like, even among friends, like, really being able to say, This is what my life is like, and that applies to the whole realm of whatever people have going the hard stuff that people are going on in our lives. But we don’t, I don’t know. We just don’t talk about the hard stuff. Enough. Amen.
Allison Breininger 24:04
Amen. Agreed. Agreed. When I think about, like, okay, so we’ve got this sort of, is it going to be triple, I don’t know, whammy, social media, which has made people like to put out their shiny parts, yeah? So we’re just seeing all the shiny parts of people’s lives. Also, social media and technology has made our attention spans, like, so short, that, like, you know how, like, people do the drive by, sort of just like, how you doing today? Good, okay, bye, yeah, right, right? Like, they don’t actually stop to be like, to listen to, what is your answer? Right? Nobody’s expecting you to give an answer. They don’t have the attention span for that. Yeah, right. You’re fine, right? Yeah. Um, and then I think the third piece, I guess, is a trip whammy. Is that I think that we are all like the world is pretty, pretty much a hot, hot mess, right? Yeah. Is that’s valid, valid, um, so we’re all little bit like, up to our eyeballs and hard stuff ourselves. And so, I mean, I even have to, because I am such a, like, a caregiver for everybody, sometimes I have to ask myself, do you have capacity at this moment to, like, reach out to all those people? You know, I have so many people in my life that I know that are suffering, right? And so my brain is always like, oh, you should reach out to them. And you should reach out to them. You should recharge them. You should check on them, and you should and sometimes I have to be like, okay, what’s my capacity, right? And how do I continue to be a caring friend, and also like, make sure that I am using being a good steward of the energy that I have my right? Does that make sense? So because we’re all like the world is falling apart, that sometimes we might not have the capacity or the or be good at saying, Hey, tell me about your hard stuff, because we’re like the whole world is on fire. That makes sense.
Justin Bajema 25:55
Yeah. So how do we make the shift? How do we try to break free of this paradigm that we’re all seemingly living under, where we can I mean, there’s a couple pieces to that. There’s where we can feel as caregivers, that we can say that this is hard, we can say that this is struggling and and get genuine reactions and response and caring conversations from the people we’re saying that to. That they can get past that discomfort, like that needs to happen.
Allison Breininger 26:38
So it’s kind of, yeah, I don’t, because obviously, we don’t want to stay in this position of where we’re at, where things are at now, and although, and I don’t know, on some level, there’s always going to be the comparing yourself to others, there’s always going to be society creating these ideals of what We should be, and us having to grapple with that, kind of sort through that, but it seems like we should be able to make changes, to make this better, whether that’s on a small level, which is kind of more what I’m thinking, than the big level. I mean, we talked about last episode, a lot of big level things that would make big differences for caregivers. So you alluded to that you think parenting is in recent years, people are talking more about how it is hard. Do you have a sense of like, what shifted there, or any thoughts on how that would then carry over, and how we could look to that as kind of an example of how we can change the conversation a little bit in caregiving.
Allison Breininger 27:45
Yeah, I’ve wondered that exact thing. And I’ve actually reached out to I reached out to somebody at one point who is like, a mommy blogger, okay, blogger anymore, like Instagram lady, right? Who basically is like, this is the worst, right? And I said to her, how did this happen? And, I mean, she didn’t have a good answer. So I think that part of it is just, I think it’s a great question to say, like, what can we learn from that movement, and how can we whatever? And I think part of it might just be saying that, hey, you know how we used to not talk about how parenting was hard, and now we do? The same is true with caregiving, right, right? And how. And so just even making that comparison, I think might be a good connection for some people’s brains, right? Because it gives them a good sort of template. Or, Oh yeah, I do see a lot of books that are like, you know, parenting is hard, or people talking about that, or whatever, and so I think even just painting that comparison to what is, you know, potentially a more, I mean, I want to, I was going to say universal experience, except that, really, everybody’s caregiving, right? They just, yeah, really, yeah. So I think that that’s, you know, anyway, that’s a different episode, um, but, but, I think so that’s one piece is just to, like, paint that parallel for people, because then that might make them realize, like right? I think the other thingthat’s funny, and I it, it feels like you’ve, like, teed me up for this, but I don’t think you have intentionally, but is, I mean, this is exactly what I do in my daily life now, right? Like, I my whole nonprofit is exactly dedicated to everything that you’re talking about right now. You know, like I’m on there sharing my story about like this is terrible to be able to paint a picture of like, this is the way it really is, right? And so, I mean, that’s one component, and to build these spaces, like our support groups and this podcast, where people can come together and be like, this is hard. Let’s be together and talk about how it’s hard. And then, you know, like on this podcast, we talk about supporters, how can you help? And then another huge thing that I do is going around talking to employers and medical professionals and health systems and faith leaders to say, you have caregivers, it’s really hard. Here’s how you can help them, right, right? So just to say that, like, yes, this is the work that I, you know, I’m doing on a daily basis, is trying to do exactly this, to paint the picture of, like, what it’s really like and to say to caregivers, like, hey, you can say this, because when I first started writing, people came to me and they were like, I didn’t know we were allowed to talk about this. Like, they literally were like, I thought that this was just something we were supposed to keep secret, was how hard this is. And I think the tides are starting to change, but I think that, like, just these conversations right are going to help move that those tides fast, hopefully,
Justin Bajema 30:44
Yeah. Well, and not to make this like an ad for The Negative Space, but certainly it can be too, but like, that’s when I found an article you had written, like it was words that I had felt but had never heard someone else’s voice, and that made a big difference. And through a chain of events following that, here we are. We are, right?
Allison Breininger 31:11
Well, that’s what we hear about this podcast all the time, right? People saying, like, I hear you and Justin talking, and it’s like they’re my own words, right? And I’ve never heard anybody else say those things, right? So, I mean, it’s things like this, right? That it’s just putting it out there, and that is hopefully starting to make a change. And so even caregivers, if you’re listening, like to share these things, right? So that, because sometimes people, caregivers might not be like, they can yet say, this is hard. I’m tired. Here’s the things. But let us do it for you, right?. Share the episode with your channel, whatever, and then let us do the work of telling people that caregiving is hard if you don’t feel like you’re in a space where you can do that yet, right? Yeah, because you might not want the backlash of like, well, at least, right? But Justin and I, we can take it, yeah, we’ll take it, yeah, we’ll take it, yeah, yeah, yeah. There’s one more angle, and we can decide if, because this in itself, could also be there’s a couple more angles. So we’ll decide, I’m going to talk, and we can decide if we’ll keep this or if these are more episodes. One is the piece about appointments and about we’ve had some caregivers tell us that on appointment days they dress up so that they can be taken more seriously. We’ve had other caregivers tell us that on appointment days they dress down, because if they look like they’re doing too well, then they don’t get the support that they actually need. So that’s one thing that I just want to sort of throw out there, is it’s just another layer of this, the around the sort of the visual of being a caregiver, around the perspective of what it what it looks like, what we think we’re supposed to look like, what we’re you know what I mean, right? The things that the lengths that we have to go to…
Justin Bajema 33:09
so that we feel like we can be perceived in the way that we need to be perceived.
Allison Breininger 33:12
Amen. Yeah, right?
Justin Bajema 33:16
That’s, yeah. That’s like, a very succinct example of how this whole, everything we’ve been talking about, like, comes out in a very practical or really, like, actual way, yeah, and I can see both sides of that for people. And it probably depends on what kind of individual, like, the personality of the individual you’re interacting with, as far as if, yeah, whether you need to feel like you’re presenting that you have everything together, whether you feel like you need to show that and look the part of being like you’re struggling. But just that, I don’t know that you have to think through that and take those steps to get the help you want. That’s terrible.
Allison Breininger 34:02
To either get the help you want for your person, like, if you feel like, look like you’re put together, or get the help for yourself by looking like you’re not put together, right? Like, I just want you to be able to, like, say, I’m just want to be the coziest. I just want to be the, you know, like, that’s all I want you to think about when you’re putting your clothes on and you have to be like, okay, how am I gonna How are, is my outfit or my hair, whatever, going to change the outcome of this appointment? Right? Like, right? I just hate that we have this extra layer that we have to be thinking about around our perception or the perception of us. Yeah, right, right. And I’ve also heard, I think even, I think it’s even, I would guess that this is even more complex for people of color? Yeah, and I would get, I have heard that it is more complex for people who are parents of kids with disabilities, and that they have felt I have heard from a couple of people about like tthey feel like they are. They really get dressed up for those appointments, because sometimes the parents are not taken seriously, and they think that they’re just like being overdramatic and whatever. And so I think that there’s extra little layers and categories in which this is even more, complicated, yeah. And so I think when we think about what is the perfect caregiver, I think it’s important for us to acknowledge that, like, I as an upper middle class white English speaking woman, right? Like, I already go in there, like, with a bunch of, like, ticks in my favor, right? And that is not the case for a number of caregivers, so many caregivers.. And so even more, the perception and all the barriers that they have to fight against are even bigger, you know, for certain people, yeah.
Justin Bajema 35:55
Something else that’s, I don’t know, kind of has struck me in the last little bit of our conversation here is there’s very much…it feels like we’re lacking in our culture, the community comes together to care for each other. Yep. I mean, we’ve talked about, yeah, on a systemic level, a lot of things need to change to help better support caregivers. But just like, culturally, your partner gets sick, you’re expected to be the one to just step in and do all the work. There isn’t that… and certainly there are exceptions to this. Certainly there are wonderful groups of people that this happens in. But I think just across the board, as a general statement, like, that’s not there. We don’t have this culture of, like, community care. And I so I wonder there, like, we’re talking from a very like, this is what the state of caregiving is like in the United States or in the West, or, you know, I wonder about other how it how it is in other cultures. Iif there are places where it is seen as something that the all the people around you feel like, okay, we all are going to pitch in and help you out, like we’re going to work together more on this, whether that’s friends, whether that’s extended family. You know I even think about, I guess there are, you know, there’s places where you are…it is culturally expected that your parents will live with you as they age, right, right? And that right, or in the order that you stay living with them as they age, or kind of things like that, where there’s more multi generational living is more of a normal thing. Like, I wonder how that changes the conversation a little bit, if it’s just because it’s kind of everyone’s in this role, and it’s expected that you’ll be in this role, or, I don’t know, maybe it’s just more open about the role. I don’t know exactly what, I’m trying to say. No, I hear you, but it feels like there might be something different if culturally, we felt differently about the expectations around care.
Allison Breininger 37:51
100%. Bbecause I think about our nation and like we all live in our own little houses. Yeah, right. And, and so I always think about that, like I have a washing machine and a dishwasher and a lawn mower, and the person six feet away from me has all of those things, the person six feet what, you know, what I mean, like, doesn’t make sense. And so I think that, you know, even if I have an insurance team, and then they’re amazing. And so I can say I need help with laundry, and somebody might come and help me, right? That’s different than I’m grateful for that. And it’s different than, like, a community coming around you and like, just being like, this is our, I don’t wanna say problem, right, our situation, right? And another thing I think about that is I just feel like, every five minutes I’m seeing another like, Go Fund Me. Go Fund Me. Go Fund Me. And part of it is that, just like, so many people are hurting, so many people are having hard things and diseases and diagnoses and accidents and all of it, sometimes it’s like, oh my goodness, do you know what I mean? Like, like, it’s, it’s not like, Okay, there’s one person in our village and we’re all going to rally around them. It’s just, yeah, we’re inundated by need and sadness, you know what I mean? And, and not that that’s an excuse, but just to say that, like, oof, it’s a lot, and unfortunately, like, all of these rates of things are like, rising, rising, rising. It’s harder to just we’re gonna rally around Justin’s family. It’s like all the families, like everybody needs rallying. You know? Yeah, it is a lot.
Justin Bajema 39:36
Yeah, I wonder, because it’d be right from the start, we talked about, like social media and how it’s not helpful. Or it has not been helpful in this regard, right?
Allison Breininger 39:46
Sure,
Justin Bajema 39:50
But I don’t know also, the Internet has allowed us to be connected with a lot more people, yeah, and so, like, I wonder how much lonelier it would have been, maybe, to be a caregiver 50 years ago, right? When you don’t have the opportunity to, like, you’re only encountering the people around you in your sphere and if everyone is just presenting this, this ideal, like everything is fine, we’re all put together, and you’re expected to do that. I just think that while social media has certainly put a lot of pressure on us and all of that, and there’s a whole host of problems there, the opportunity is there for us to feel more connected as caregivers, to other people, to see more of what other people are doing, for you to do what you are doing, That is, I think we can leverage that.
Allison Breininger 40:44
Well, hello, you live in Washington State. I live in Minnesota, right? And we have met through the internet,
Justin Bajema 40:52
Right And then met in real life, yeah.
Allison Breininger 40:56
Exactly. Exactly. And now have this podcast that people can listen to, yeah, so for sure, I mean, I think that because, again, because we’re in our own little individual houses, right? Like there are not a lot of opportunities for connection, for, you know, meeting people, for all of those things. And I think that’s a huge part. That’s why our support groups are virtual, right? Because caregivers cannot often get out of their house, and so I think you’re exactly right, and that’s why I even try. And I kind of love this that, like, if I hop on Instagram to do a story, I don’t get cute before I do that, right? I’m like, I’m like, the opposite of an influencer, because I’m like, No, I want you to see that I am tired. You know, it’s funny. Years ago I we did this like photo shoot for Be The Match, and they made this, like, caregiver book, and they used pictures they like, did a photo shoot on me. And of course, I got, like, cute for the photo shoot, and my mom afterwards was like, people are gonna hate you because they’re like, they’re gonna look at you and be like, Look at this girl with cute hair and makeup, who’s like, stretching at the lake, they’re gonna be like, this is not reality. And I’m like, You’re right, it is not reality, right? Yeah. And so that’s all part of what I’m trying to do, right? Is just like, log on and be like, This is it? This is me. You know, I’m tired. I look like this. So anyway, I think that there’s the internet can, actually can be super helpful, if we use it to find our people, right? So, yeah, we’ll take the good, I suppose. Yeah. Supporters, yes. Help us support, right? Yeah. I mean, I think we’ve kind of sprinkled it throughout, but I think part of it is, and we say this all the time, but we, I think we can’t say this enough that supporters pay attention to when you are interacting with or listening to anybody who’s having a hard time. Pay attention to your response like and about and to help yourself recognize like it’s not about you in this moment, right? And so if you find yourself feeling uncomfortable, that’s okay, yeah, right, and you can talk to somebody in a bigger ring about that later, yep. However, in this moment, your job is not to take care of your comfort by bright siding or dumping toxic positivity on the person who’s sharing, being brave enough to share their reality with you. And so if somebody says to you, like, I’m a caregiver right now and I’m tired and it’s hard and oh, and I just don’t know, like, some great responses might just be, wow, that sounds really hard. Period, I’m here. Tell me more period, right? Pay attention to the the phrases and how your gut might want you to go to some of these toxic positivity phrases like at least, and catch yourself, right? So that you can let that person know that they are allowed to say those things, and you maybe even say that, right? Say, yeah, thank you for telling me how this really feels. Thank you for being honest with me. I’m sure that that wasn’t easy to do, you know, um, so I’ll stop there and let you hop in with your ideas, your first gut reaction.
Justin Bajema 44:22
So I think that there I talked about, like a feedback loop, right? And how, you know we’re not getting something that would help us feel better about not having it all together or something. So as I was preparing for this, I was thinking, you know, we often don’t feel like we’re doing a good enough job. We’re not meeting the standard. And so can supporters tell us that we’re doing good, that we’re but you alluded to earlier in the conversation that like that can come across as, like, sort of a toxic positivity, like you’re doing great. You’re doing so good, and so there has to be, I don’t know exactly how you thread that needle.
Allison Breininger 45.11
Yep,
Justin Bajema
You do. Yeah. Can I? Can I make a guess?I think, like, you have said, acknowledge, like, saying that sounds really hard, and I know that you’re doing the best you can in this situation. Is that is that a good way to say that?
Allison Breininger 45:31
Yes, that’s one way for sure. Yeah. I mean, this is bringing me back to my education days where we talked about, like, praise versus affirmation. So if you’re a little kid, and I say, good job. You’re like, what doing? What did I What? What did I write? If you say, Wow, you are sitting on that carpet square with your eyes on the teacher paying attention, it’s a wow, right? So it’s naming something specific. If I just say Justin, you’re such a good caregiver, wow, right? You’re like, uh, why? Yeah. And if I say Justin, you are really attuned to Sarah’s needs, and you notice when she’s not feeling well, and I just see how you respond, and, you know, show up for her in that way, right? Like, so it’s being specific, right? Because for any of us that feels so good, like, from, again, from the education space we call like running commentary. It’s basically like just naming what we’re seeing you do. But again, that’s showing in this conversation, it’s also showing the respect of, like, I see you, like, I see you, and I’m paying attention, and I notice, instead of just being like, wow, so good. You’re over there. You’re so strong. Justin, it’s like, Hey, I saw that today when you and Sarah were taking that walk, that you noticed that she was slowing down and that you done it out right, or whatever it is. And so it’s just naming specific things that you might see them doing, yeah, and affirming them in that way, instead of this just sort of generic, like, such a good caregiver, bye, right? Yeah, just sort of like, Yeah, whatever. Because, again, with the affirmation, it shows that I’m seeing things that are hard, right? And like, I saw that you did that, and that sort of explains that I see that that was important, and that what you did, right? So that’s another way too.
Justin Bajema 47:26
No, that’s great. I was not anticipating that I teed you up so well for something that you were so well prepared to answer. I knew you’d have some ideas, but that’s really good. I think that perspective you have from the education space like, that’s a really good way to to do that, to be specific, to help them feel seen through that. Yeah, that’s powerful.
Allison Breininger 47:52
It is, yep. So it’s called praise versus affirmation and okay for all of us, yeah, right, yep, yep,
yeah. So let’s see anything else that we want to I mean, I think so if somebody says something hard to you, we’re going to think about how to, like, give them that space and not brigh tside them. Yep, we’re going to give some affirmations to folks about the things that we’re seeing. We’re going to pay attention. When I say we here, I’m saying supporters. We’re going to pay attention to our own emotions and dump out to a bigger ring, not dump on the but comfort into the the people that we’re talking to. I think, I mean, we talked about community support that wasn’t really like the theme here today. We can never say enough of that, right? Like, show up for your caregivers, because they whether they are saying it or not. What is that phrase? That’s always going around, like, even if she carries it well, doesn’t mean it’s not heavy, something like that. Yeah, right. So exactly like, you might look at either of us and be like, wow, look, they’re doing such a great job. Even if we’re doing a great job, that doesn’t mean that it’s not hard. You know, and so, how can you take a little bit of that heaviness off of their plate? Yeah, so, and then caregivers, just whether it’s you feeling like you can take an inch towards, like, speaking your truth and just, you know, sharing how this experience is, or let us do it, right? Like, just share, the podcast, share The Negative Space, share whatever, and just let our words and experiences sort of speak for you if you don’t feel like you have the energy or the capacity to be able to do that.
Justin Bajema 49:42
Yeah, absolutely, yeah.
Allison Breininger 49:35
Oh, good talk.
Justin Bajema
That was a great talk. Good conversation.
Allison Breininger 49:39
Awesome talk again next time.
Justin Bajema 49:42
All right, sounds great.
Allison Breininger 49:45
All right, see you later. Friends, okay, bye,
Justin Bajema 49:47
Bye. You’ve been listening to In Sickness. Find us online at insickness.care, or on Instagram at In Sickness podcast. You can send your questions and comments to insicknesspodcast@ gmais.com. If you enjoyed the show, please share it with a friend or fellow caregiver, or leave us a review on Apple podcasts. Thanks for listening and take care.