Transcript
You’re listening to in sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Good morning. Justin, Happy New Year.
Justin: Yeah, happy new year. We made it to 2023.
Allison: We sure did. That sounds like science fiction to me this 2023 I don’t know, it’s like, Is it super real? Is this happening?
Justin: Yeah, it is. It is pretty crazy. Yeah, 2022 was a year, and it feels good to, I don’t know, I’m not super big on, like, new year, new me, that kind of thing. Like, I don’t know, it feels good to move on, I guess.
Allison: Yeah, put that behind us.
Justin: Yeah, see what’s ahead next year.
Allison: I don’t always want to see what’s ahead. I’ll just be present. In this moment, I’m feeling great. I’m here with you. It’s a new year, doing this episode, like, that’s that’s where, that’s where I’m going to be today, not that, not past, not future, present.How have you been? How was your holidays and all that?
Justin: Yeah, the holidays went well, we don’t have to travel, which is something I will never, not be eternally grateful for. Because that just feels like that would add a whole nother level of stress and everything to Christmas and all of that. But, yeah, it was nice. Spent time with family, had time off of work to just kind of relax. Unfortunately, Sarah and I both kind of caught a cold somewhere in there. So for her, she’s had it a little worse. I’m a couple days behind, but I’ve managed to seem to avoid the worst of it. But for her, it kind of flares up a lot of her other stuff, fibromyalgia, pain and her fatigue and all of that kind of stuff. So it’s just, you know, even something as simple as a cold is not always just a cold in our lives. So that’s been the last few days kind of working through that a little bit.
Allison: I think that’s such a good reminder of when people are like, well, a cold or a flu or a COVID or whatever that like, no, no. A cold in another person’s house is different than a cold in our house, you know? And even I always think about like, as a cold for me as a caregiver, like, that’s more complicated for me to get sick than somebody else. And so it’s a good reminder. And I think, you know, when people have fibromyalgia and some of the other things that Sarah has, I hear that a lot, that they’re like, this triggers this, which triggers this, which, you know what I mean. And so it’s a good reminder to people that a cold is not just cold, right? And so that’s why maybe we take more precautions than others and all of that. So I hope that you’re both over that quickly.
Justin: Yeah, I think that’s certainly what we’re hoping for. And it seems, both kind of on the up and up. So that’s great. What about you? How are things with you? I understand you did a little traveling recently.
Allison: We did. We’ve been doing a lot of traveling, which is kind of funny because we never left the house for a long, long time, and we’ve been at airport a lot lately. Yeah, Sean and I, and I just flew to our hometown, Fort Wayne, Indiana, because that’s where we both grew up, and that’s where Sean’s parents and Sean’s sister are still there, so we went to go visit them. And then also, while we were there, we had a big old Negative Space party. So fun, because we had people like people who Sean grew up next to on the same block were there, you know, so people he has literally known his entire life. We had like the pastor who confirmed me and who married us was there. It was just like they were just people from every part of our growing up who came. There were 50 people, and it was just, yeah, it was really beautiful. And but something that really struck me, because I was imagining this was going to be a party where people were like, going to come, you know, we sort of were like, you haven’t seen Sean and Allison in 20 years come to this party, and I thought that that’s kind of what would get people in the door, right. And then once they were there, I could be like, Hey, let me tell you about this cool stuff we’re doing, but almost everyone who was there, I mean, certainly was there because they love us and they want to see us and they support us, but had a really deep caregiving connection, either personally in their past or current, or someone their mom is now a caregiver, or their son. You know, almost every single person would just walked in with this really deep connection to the cause, which just felt like beautiful and significant and just like even more. Instead of just like, hey guys, can you help us with this thing we’re doing. It was like, Whoa, you get it and you understand, and you’re here to support us, because this will support you as well, right? And so one conversation I was having with a couple, the husband said, Well, you know, my wife here is a caregiver for her parents. And she said, No, no, no, no, I’m not. And he looked at her, and he said, you quit your job to care for your parents. You’re a caregiver. And I said, yes, you’re a caregiver, in fact. And then I said to the husband, I was like, go buy her a mug. She needs a mug. She needs to be able to look at that every day and say, I’m part of the story. And even then, she’s like, No, I don’t really need it. I don’t really need a mug. I don’t really need that reminder. And I was like, I don’t care if you need a mug, you need a mug, you need the reminder. And she kind of just kept pushing it off. But even as she did that, she she had like, tears in her eyes. And it just made me think, like, what is it about this title? You know, she had just sat there through our whole presentation about how I talked about, like, this is what caregivers are, and this is what caregivers do, and we’re here to see caregivers. And even still, she was like, No, I’m not a caregiver. And it struck me, and this is certainly not the first time that I’ve had conversations like this over the years of doing this work. And I know last, our last episode, we talked about acceptance, and that was more we sort of like the next stage, right of like, I know I’m a caregiver, but I need to accept that this is what my life is like, and this is like long term and that the life I thought I was going to have is not it and all this, yeah, what I want to talk about today is almost like the step before that, right, of accepting, like, even realizing, like, I am a caregiver. That is a role that I have taken on. So I wanted to sort of chat about, why is it that some people hesitate to take on that role, and what happens when they do, and what happens when they don’t? And so, so as I say that, like, what does that bring to mind for you? Like, have you ever thought that? Or have you heard of others? Or do you have ideas about why someone might hesitate to take on the role or the title?
Justin: Right? I think there’s probably a number of reasons. I think that part of it might be, it is just, it’s like that first step in, you know, that road to, like, accepting that this is now my life, like, there’s a hesitation to, if I call myself a caregiver, I’m acknowledging the situation a little on some level. It’s like there’s a hesitancy to do that. It’s because it makes things real.
Allison: Can you just pause there for a second? Because that was a really important thing you just said, and I don’t want you too quickly to, like, move on to the next bullet point. You know what I mean? I yeah, I just think we need to, like, pause in that, that like, by saying, by me, saying, I’m a caregiver that is acknowledging that a person in my life is sick enough to require help, and that’s a big deal. So I just wanted to, sort of like pause to, like, take in the enormity of that, that it’s almost easier to be like, Oh no, no, no, no. I’m just caring for my parents. I’m just caring for my husband, right? Or I’m just, I’m just doing I’m just a daughter, I’m just a whatever, because then that’s not saying they’re so in such a state that they need this extra help, which is a hard thing to swallow. So it’s not, in that case, it’s not about us, it’s about them. Does that make sense?
Justin: Yeah. I think another big thing is comparison. And I think people see other people who are, who have identified as a caregiver, or people they know, who are, you know, caring for someone who is doing much worse, or they have a role where their caregiving responsibilities are much more intense. And so, you know, my situation is not that so, like, somehow, by calling myself a caregiver, I’m putting myself on the same level as that person, or, like, equating our situations. And like, that’s there’s a whole broad way to be a caregiver, and there’s different levels of caregiving and, like, we don’t have there. The comparison doesn’t have to be there. But that’s, I think, a really natural, like, human thing. And so I think that it could be a big struggle. I think that’s probably, you know, for me personally, I I was trying to think back to like, when did I, like, consider myself a caregiver, and I, I couldn’t really pin it to like, a moment, okay, I know that at some point I started looking for resources for caregivers, because I felt like I needed support and like, I mean, that’s how I found you, is like, looking for articles on, like, caregiving and wanting to, like, I don’t know, learn how to manage this role, or something like. So somewhere before then, I came to that point, and I think that there was initially, it was like, this is just my role as a spouse is to when my partner is ill, to step in and take care of them. And, you know, obviously, when I think most of the time, when we enter into these relationships, we’re expecting that to mean a cold or a flu or right, you know, maybe something a little bit more than that. But, you know, we’re not thinking of a lifelong, chronic illness? And so somewhere along the line, there was that turning point of like, this is not a short term thing, this is a long term thing. And so I think for me, it was like, somewhere in there, I need more resources to help me through this, or I need to figure out how to myself make this new life sustainable and like so part of that was like, Okay, I am doing caregiving. I am a caregiver. I think another, another piece that probably was in that process was like, when it came to the point that I needed to have some accommodations from work and be like, you know, I’m going to need to sometimes leave work and go home to, yeah, because my wife’s not doing well, or I’m going to be out taking her to appointments, um, things like that and like, that’s having having a title to put to it for that, makes that easier to do.
Allison: For sure, I think that, you know, 11 years almost to the day, is when Sean had his bone marrow transplant, which is one of the very first things that happened to him. And for that, I’m sure I’ve told you this story before, but the social worker gave me a contract. Like a caregiving contract that said, like, in order to have a bone marrow transplant, the patient must have someone who will sign this contract that says, For the first 100 days, for 24/7 someone will be there. And I had to sign it, you know? And so it was sort of like, okay, sure, sure, sure, I’ll sign it whatever, like, whatever we need to do to make this happen. But I sometimes wonder if, like, it was that, like throwing me into the deepest end of the deepest water. And then giving it a name at the very beginning. Is what made me like, I never questioned it. But it’s funny, because sometimes when I think about, when I, you know, talk about, like, my story, I add a year on to the year before it because we spent a year before looking for a diagnosis right back and forth, 90 minutes to the Mayo Clinic, trying to, like, testing and blah, blah, blah, blah, blah, and so when I add up how many years I’ve been a caregiver, I start way Back then, okay, even though that point, I don’t, I don’t think I would have followed myself a caregiver at that point in the moment. But now, in retrospect, I’m like, Oh, absolutely I was right. You know, making those appointments. I remember on the car rides back home from the appointments, calling all the family members and talking about what we learned. You know what I mean? So, but I think the real thing was like me signing an actual contract that said you will now be a caregiver for the next 100 days. So, I mean, I think, think that for me, that it was just obvious, because it was so intense at that point. Speaking of that intensity, I want to go back for a second when you said, think about the comparison. Because I think sometimes I hate, I mean, obviously I hate that my story is so intense, and I wish it wasn’t, but I hate also that, because I feel like, as a model of caregiving and of saying, like, here’s what caregiving is. I hate when people look at it and like, well, I don’t do what you do. My situation is not like your situation, I’m not a caregiver. And there’s such a huge spectrum, you know, like, there are other people like my, I think I’ve talked about this. My aunt recently moved to town, and I do things like, I take her to CVS to pick up her script prescriptions. I bring her to the store because she can’t, can’t drive, I help her with it, you know what I mean, I consider myself a caregiver for her. Even though that’s really different than what I do for Sean. And so, I think it’s, I want to make it super clear as people listen that like you and I have pretty intense and chronic caregiving roles, and it can look in so many different ways that it doesn’t have to just get to this level to count, you know. I’m putting up air quotes to counters, you know. So I don’t ever want people to feel like they can’t say that because their lives aren’t like ours, you know?
Justin: Yeah, I was thinking kind of of this like hesitation to, you know, have this role that we identify ourselves as a caregiver, and it’s kind of like, and you can tell me if this sort of analogy kind of makes sense, we have these sort of different, like buckets or something that for our different, like roles or identities. So like that might be a spouse, that might, you know, we’re a parent, we’re a child, we’re an employee, you know, we have hobbies. Maybe we’re a musician, we’re an artist, you know, all of these things. And so the things we do somehow, kind of like fall in those different roles or identities. And so if we start taking on, like caregiving stuff, like, say, you know, for our spouse, for example, like, where does that stuff go if we don’t have this identity of caregiver? And I wonder, if that can, you know, because we’re that’s, we’re doing that for our spouse, that fits in, okay, that’s my role as a spouse. And if that can, like, crowd out some of the like, great stuff about being about your role as a spouse. And if that, if you don’t have another bucket to put that stuff in if that can, like, be early seeds of, like, resentment, or things like that and that when we have a separate like, okay, I am a caregiver, this stuff that I’m doing kind of falls here in this spot. If that gives us some more freedom to, like, have room for those other roles, right? That makes sense, because there’s a little bit, there’s like, a delineation, in this moment I’m being a caregiver, but in this moment I’m being a spouse. It kind of allows some compartmentalization, which I think can be helpful in this role sometimes.
Allison: And I could see that going both ways. Because I think that sometimes people feel like it’s, I’ve been in situations where people have said, well, I don’t want to call myself a caregiver, because that feels demeaning to the person in my life that I love. It makes them sound like they are super in need and that they’re, you know, like incapable of doing whatever. And so I don’t want to use that term, because it sounds demeaning to them. And so like for them, they would just rather say, Well, I’m a spouse, I’m a mom, whatever. And so I think that that’s this other complicated layer, is the person, the person who’s being cared for, right? Because it could feel demeaning to them. It could I as the caregiver, could feel like it’s demeaning to them, or sometimes the person who’s being cared for thinks they’re fine, true. They think they’re fine, or they think that what their loved one is doing for them is just what they should be doing. And they don’t want someone to be called a caregiver, because then that makes them have to accept what’s going on in their life. That make sense?
Justin: It does. And I think one thing there is so you can identify yourself as a caregiver to yourself. And in that situation, I think there might be benefit to like you with yourself, and maybe talking to friends, or like, you know, you’re close circle, like, recognizing that this is a role that I’m in well, at the same time, you know, not, quote, unquote, like going public with the situation. But I still think there for yourself, there’s value in like, I am taking care of someone else. I am supporting them because I think it is if you don’t identify as a caregiver, I think there’s a potential block there to getting the help, getting the resources, getting the support that you need. Another thing that you said there that I just kind of wanted to circle back to, just briefly, I guess, is that I think, like there is a pervasiveness of like individuality, or like we need to be able to do things on our own, or like not relying on each other in our future. That like identifying as a caregiver and being a caregiver, which is like, if you look at statistics, is a kind of a universal experience, like, we’re all going to be in that role, or need that role at some point in our lives. But like, somehow acknowledging that like goes against this, like, individualistic mentality that, like, I think, damages the like, I don’t know. I think it’s beautiful that we all have to rely on each other. And I, you know that we have, we need people to support us and like, that’s okay. And you know, I also recognize that for the individuals in the specific situations it might, it can be very hard to like, I don’t feel like I want to admit that I need a caregiver, or, like, that’s, you know, all of those reasons. Like, I’m sure that that’s a really hard place to be in. But I think also, like, on a bigger level, like, it’s okay for us to, like, culturally, admit that, like, we need to rely on each other.
Allison: And I think that’s in two different layers in this conversation, right? So there’s the loved one who needs to rely on someone, the caregiver, but then the caregiver needs support from the community. Because I think that part of you know, I appreciate that you said that there’s sort of the like, acceptance yourself individually saying, like, Okay, I’m like, naming it for yourself. And then there’s the sort of, like, naming it more publicly. And I think even the naming it yourself can help you realize, like, oh, that’s why I’m tired. Oh, that’s why I feel, all these emotions and exhausted and like, why I can’t do the things that some of my peers are doing. Because I have this whole extra role. I’m doing more, and I’m carrying more, and I’m feeling more than my friend next door. And I think when we realize that we’re able to be like, Oh, that’s why I need to go to bed earlier. Oh, that’s why I can’t this, or I feel this, or I want, you know, and so I think that the internal acceptance is important for that reason. I think it’s interesting, because when I think about, you know, in August, September, September, when Sean and I went to Texas to the fan COVID email conference, one of the things that that I encouraged the organization to do, which they did, was that everybody had a name tag, but then you could choose these ribbons to add to your to the name tag, and one of the like, first timer or researcher, or whatever, one of the ribbons was caregiver. And when I did one of my caregiver support sessions a whole we spent a whole big chunk of the time just talking about, did you pick up a ribbon? And it turned into a whole thing where some people were like, nope, like, I would have never called myself that. Or now I’m worried about how my person will feel if I put that ribbon on or, you know, and so it’s just interesting, like, and so that’s more of a and maybe that was too much to ask people to publicly claim that. But I think that that’s if you’re listening and you’re like, I don’t know if I can ready to say that out loud. Maybe you don’t have to say it out loud yet. Maybe you just say it to yourself, you know. And probably you have if you’re here listening to this podcast, you know. Because I wonder about that. I wish we could go back to, like, Justin of a few years ago and be like, Why? How did you even come up with the word caregiver to even Google it? Do you know what I mean? But anyway, so I think that that’s an important distinction to be, like, claiming it yourself, versus claiming it more publicly. Um, even with that, it’s, I have two different friend, close friends in my life that it, one I was gonna send a box to because she’s caring for her dad, and she was like, I don’t want it. I don’t want, I don’t want to be part, you know, the whole theme of the box is I’m part of the story. She was like, I don’t want this. I don’t want to be part of this story. And another close friend of mine who is caring for her husband, and same thing was like, I get, I get the gist of these boxes, but I don’t want a reminder that I’m part of the story, because this is not the story that I wanted right now, you know? And I get that, like, if sometimes, like, for some people, a lot of people, it’s like them. It’s really empowering, right? To be like, wait, I am part of the story. I’m here to see me. And other people are like, this is the last thing I want to be reminded of as if this is part of my life. And I just, I just want to say that we probably all, all go through seasons where there might be a season where you’re like, you know what? I don’t even want to look at that mug, because I don’t want another reminder that this is part of what I’m doing, and another season where you’re like, you know what? I need. I need this to claim this today. Because nobody’s seeing me or whatever, you know. So I just want to say that whatever season you’re in, it’s fine. It’s not like we want to be like, I’m going to celebrate it and this and that, because it’s a hard role. It’s not a role that any of us want to have. We’re just saying that there can be benefits of naming it, but that doesn’t mean you have to, like, take it on and celebrate it and be like, I’m so glad I’m this thing.
Justin: I wonder if there is a hesitation in in some situations, to where, like, if I identify as a caregiver, like that suddenly becomes my whole identity. Or like, I want, I don’t want to identify as a caregiver, because then, like, that’s who I am is, I’m, I’m a caregiver? And I think that it’s, again, it’s like it can be one role you play.And it doesn’t have to, like, diminish the other parts of you as a person, even though a lot of times, like, it feels like it is this thing that can be taking over your life, but that I wonder if there is a fear that, like this role will overshadow who I am, and it will become all of who I am. And I don’t want that, and that’s a really difficult place to be in. And I think that kind of, I don’t know, like that, said those are valid feelings and emotions to have about this and like, we’re here talking about, you know, how it can be great to take this step to identify as a caregiver, but like, if you’re not there, or if that’s not something that feels like will help you in this moment, that’s also okay.
Allison: Totally. I think something, I remember having this, this moment where, like, Sean was out of town, Maya was out of town, all these different things were happening. And, you know, because I identify so much as caregiver and mom, wife, when they were all gone, I was sort of like, Who Wait, who am I? And so, and I think we’ve maybe talked about this before, but it was a really good moment. For me to think about sort of nouns versus adjectives, and that, you know, we’re talking so much about being a caregiver, and that that’s a role, and yes, we have roles in our lives, but to think about, what are the adjectives like, what are the descriptors about who Allison is as a human, not what she does. And that was really helpful to me in that moment. And I think that that might be helpful to people listening to think about because it’s like, I am a caregiver, I am a this. But what are the things that sort of are pervasive throughout all of my roles? You know, like, is that kindness? Is it humor? Is it? Whatever it might be, but I think for us to name our qualities, because those qualities are going to show up in all of the roles, probably. And those are, what’s, what sticks. Those are what, what’s, what’s more important than the actual like title of the role that you’re in, because that’s what you’re doing, not who you are.How does that say with you, when you see, when you hear that?
Justin: I think that’s a helpful kind of model to think about. Is like, yeah, that kind of two layers to things like, yes, there’s these titles or roles, but also like, how is, how do I, as me, like, manifest in those different places. And what are the familiar kind of themes of who I am, that show up in those different ways.
Allison: Yeah, I like that, the familiar themes.
Justin: That feels like a helpful kind of exercise to like, because I think it’s easy to lose ourselves in caregiving if we don’t, if we’re not intentional about, like, staying connected to the other parts of us as we’re going through this.
Allison: Yeah, in so many of our roles, it’s easy to lose ourselves, right? For those who are parents, that for those who are you know in your job, like in any you know. And so I think you’re right to think about, what are those familiar themes? I like that, that that keep showing up and that are, those are the things that are more important at the end of the day. Because I was at the party, I was talking to someone who had cared for both of her parents, and her parents died within a day of each other, and so a huge part of her, her daily life had been being a caregiver. And then poof, gone, gone. And so we want to recognize that it’s a role, but also we don’t want to be lost without it, you know? And I think that can happen sometimes to parents when, like their kids are get older, or if you’re a carrier and your person passes away, or whatever, you lose your job and and so I think it’s important for us to key into who we are more than what we do. I mean, alongside it, right? But I think that those are the who we are. That’s, I mean, it’s, it’s changeable, for sure, but that’s deeper and more important than the stuff that we do each day.
Justin: One other kind of thing that I thought of as we were talking here, as far as a a reason someone might be hesitant to identify as a caregiver is like they don’t want to either draw attention to themselves or take the spotlight away from the person who is sick. I think that that’s a pretty could be a pretty big reason. And I think I mean that harkens back to a lot of the stuff you talk about is, like the negative space and all of that. Like, you know, they’re the primary thing. They are the subject of the art, to use your analogy. And if I start saying I’m a caregiver, like, I don’t want to diminish them, or, like, pull the spotlight, but like, I don’t know, maybe it could be helpful. Like, you’re a team in this. Like, yes, the person you’re caring for, the things are happening to them, like they’re the center of this situation, but you have a very important supporting role in that. And to think, and I maybe this the team thing makes more sense to me, because I’m caring for my spouse, who Sarah is, like, Is my teammate, like, in life, and so, but to, I don’t know. I don’t know if, thinking about if, if you are don’t want to draw attention or draw the spotlight, thinking of it as, like, you’re like, part of the team here, and so, like, I don’t know there’s enough light for both of you. I don’t know what, yeah, where the analogy is there exactly. But have you run into as a reason?
Allison: Oh 100% thay they feel like, well, I can’t complain because I’m not the one who’s sick. And I want to say it’s not complaining, no, it’s more stating. The facts, right? It’s more like, this is my reality, this is what I do. This is what’s happening to me. So it’s not complaining. And so, but I think that’s really hard for people to take in. And so I think about even, even at that gathering that I had last week, at that party, if it hadn’t been a caregiving related party, I bet zero people in that room would have talked about their role, but because it was, I kid you not that like 96% of the people in that room are or have recently been caregivers. And they were talking about it just because it was the theme of the party. But I just wonder, like, people, like, don’t typically say that because they don’t feel like they can, or they feel like, you know, they’re complaining, or, you know, all those reasons. And so I want us to think about like, what? What’s the benefit? What is the benefit of claiming it, either for our set to ourselves, personally, or saying it out loud? So when you think about that, like, what do you think? What might happen if somebody does?
Justin: Yeah, I think that, I think I mentioned this earlier, but like, I think it, it opens the door for support, for having, sharing with others this hardship in your life and feeling like you’re not just this invisible part of what’s going on, and I think that it can help make the situation that you’re going through sustainable, as much as it can be sustainable, you know, sometimes it feels like that’s just an impossibility, but I think that, you know, and we’re using the word caregiver, but you know, you don’t have to use that exact word. There’s other words people use. And you could just acknowledge that I am providing care for someone you know, and without a specific title to it, but like, acknowledging the role that you’re in. And once you do that, you know, I think that, like, you can let your shoulders down a little bit. You can kind of like, okay, this is what I’m doing. What can we do now to help make each day easier doing this? Or what resources you know, if you’re not identifying as a caregiver, like you’re not probably out there looking for resources on whether that’s support groups, whether that’s, you know, programs that offer leave for work to take care of your person, all of these different things like that. Kind of those resources open up once you take that step and like, Okay, this is what I’m doing now. This stuff is available.
Allison: Totally, I think there’s this, and I don’t remember where I heard this phrase, but it’s like, name it to tame it. And I think it’s sort of like, once you name, I think it’s maybe about emotions, right? Yeah, okay, once you name something, that sort of calms it a little bit. And so I think, you know, internally, I think there’s a benefit of, like, naming it to say, like we said before, oh, that’s why I’m so tired. Oh, that’s why my life looks like a little different than others around me, you know? So there’s that piece. And then, like you said, like, like, the Justin of years ago took that step and then started googling things. And then, once you’ve Googled things, you found, I mean, you know, you found me, and you found lots of other caregiver people that like now you’re you realize that you’re part of something. So I talked to a lot of caregivers who are like, I think I’m the only one who feels like this. I think I’m the only one who’s doing this. I think I’m the only one. And once they are able to come into the community and realize like, Oh no, actually, we’re there’s a lot of us. You aren’t alone in this. You aren’t alone in feeling like this. You aren’t alone in the fact that your days look like this there. I mean, that’s a huge awakening for people, because it’s such an isolating role.
Justin: That’s where I think supporters can step in and help. Oh, yeah, is that like, if we’re at a family gathering and I think we mentioned this in a previous episode. And like, who is sick? This person’s sick. This person has cancer. Like talking about, okay, this is the person who’s caring for them. Like to talk about that in normal conversation, to recognize that there are people in that role,caring for these other people. Because then, as a caregiver, you’re hearing about all of these other people that are in the same, similar situation. And it can feel like a more quote, unquote norm, the normal thing that it is, yeah, in some ways. And so I think that as a supporter, just that seemingly simple thing of like, talking about other people you know in that role, or just making that a normal part of conversation, can help as a caregiver, feel like, okay, this isn’t like. It may feel sometimes like I’m the only one here, but I’m not the only one right now. I have an opening to talk about it.
Allison: And to hear in those situations, because I think this always happens when we go home to our hometown is that, you know, we get the list of like, here’s who’s died, here’s who’s sick, you know, and all of that. It’s like, Oh, my goodness. And so if I’m a caregiver, and I hear that, but then I hear like, oh, this person was just diagnosed with this, and their spouse is the one caring for them. Or, you know what I mean, when I just sort of hear that that’s honored? You know that that role in general is honored, that’s going to make me realize, like, wow, this is a space where caregiving is honored. Where people think about the person behind the scenes, where people talk about that. Because when you otherwise, when you hear that. You just imagine other people’s living rooms where they’re saying, oh, and then there’s Sean, who’s sick, right? And then, is anybody saying anything about Allison, you know, and what she’s doing behind the scenes, and so, so, yeah, I think that’s huge, a huge piece of that, I think too, that once you know caregivers, once you are able to put yourself out there a little bit like if you if people don’t know what you’re going through, if they don’t know how hard it is, if they don’t know what your person’s going through, they can’t help. And I know not everybody likes to share, and that’s totally fine. And just to think about the fact that the benefit of sharing is that people can help if they know that your person’s in the hospital, if they know that the surgery is coming up, if they know that they’re struggling, they’re more likely right to bring the casserole, to shovel the sidewalk to whatever that is, whether you have done the ask or not. So, but to supporters, I want to say because that’s, you know, put that’s putting work on the caregiver.So supporters, I just want you to say that, like when you know of a person in your circles who is sick or struggling, I want you to look for the person behind the scenes, don’t wait for that person to come out and say, Hi, I’m a caregiver, and we need a casserole. If you find out that Susie was just diagnosed with something, reach out to Susie’s husband. You know, I heard what’s happening with Susie. I’m also thinking about you and the toll This is taking on you and the role that you are playing. I’m willing to help in these ways or whatever, so that you can sort of proactively and so if you’re a supporter and you’re listening, or if you’re a caregiver and you’re a caregiver and you’re listening, today, you might think of people in your life that haven’t yet come to the realization that they are one and that maybe you want to send them this episode and just say, Hey, listen to this. And thinking of you right, this might be interesting for you to listen to, just to sort of, in a safe way, kind of help them to realize that there are some benefits, both internally and externally, of naming it.
Justin: For sure, and if you are that person who has not claimed that role or that title of caregiver, and are have for whatever reasons, hesitation for doing that, particularly like larger public way or Like you know, widely sharing that like, you know, first start with yourself, like, if you can acknowledge that this is a role you have, and you can have whatever emotions about that, like you can feel empowered by that, and you can feel like, Yes, I’m doing this, and I don’t want to be like, That’s both of Those are equally valid. But then if you can find one other person to, like, talk that, talk to about that, and like, this is a role that I’m in, and this is why this is so hard, or I don’t want to be here, or whatever it is. But I think that particularly, I think if you’re struggling with identifying as a caregiver or the situation like not keeping that inside, because I don’t think that in the long term, keeping those feelings just bottled up is gonna serve you in the best way. And so, yeah, don’t have to, you know, start a blog and still start blogs, I don’t know, nobody reads, or whatever it is. You don’t have to be doing like, you know, Facebook updates on your life as a caregiver. You don’t have to do all of that, but I think that starting small and just like recognizing that this is part of your life, and then going from there, as far as seeing what you need.
Allison: As you acknowledge that, because I think even, like we talked about in our last episode, about acceptance, the amount of energy that we are spending and denial, like, we don’t have extra energy to spend, right?And so if we can release that, like you said, the shoulder drop of that, of like, Oh, all right, I’m gonna accept that. This is a role that I’m in. Like, that is a release in itself. And. You’re listening, and you’re like, I don’t have a person in my life. I could reach out to you. Got two right here. You know, reach out to us at any point and be like, I am a caregiver, and it’s hard, or I don’t want to be here, whatever that is. I don’t want to be doing this role, like, just know that both of us are here and available to talk to, yeah, yeah. Okay, well, New year, new year. I’m so glad. I just think about, I wish we could go back however many years to talk to Justin of whatever year that was, and that so glad that whatever it was that made you realize that you were a caregiver, that made you Google it, that made you find me, that all of that led to this moment. It’s amazing. So see, caregivers, if you claim it, you just never know what’s gonna happen down the road. You could become a podcaster.
Justin: Right? Or at least gain a wonderful friend.
Allison: Yes, yes, absolutely. Oh, all right, my friend. Well, I will say that these episodes with you and meeting you in person was, for sure, a highlight of 2022. My goodness, absolutely so looking forward to another year of these great conversations.
Justin: All right. Sounds good.
Allison: All right, see you later.