Transcript
Justin Bajema 0:04
You’re listening to in sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema. Good morning. Good morning, Allison. How are things going over there?
Allison Breininger 0:17
Good busy. We yesterday, Sean and I and my mom got to be at a conference, a survivorship conference, where we got to have a negative space table and got to just make, like, lots of connections with amazing organizations. It was fun to be able to we had a lot of wives who said, because there are a lot of breast cancer survivors, okay, or current breast cancer patients, and so a lot of wives that I talked to, and I said, we have this podcast. And on the podcast, there’s a guy talking about being a caregiver. And they were like, ooh, and so that was very exciting. And also for them, you know, sometimes I think I don’t want to over generalize, but sometimes men might not be as quick to jump onto something like a coaching or a support group, but I was like, a podcast, they can just plug in their little earbuds, and privately, nod along if they want. So anyway, it was cool to get to talk to people about that nice we I think, should I say this out loud? I’m just going to Okay, I think we dodged a COVID bullet. Okay, my Maya got COVID, probably from the airplane on the way home. But I think we’re probably at a day where we can say that Sean and I have dodged the bullet. So that is amazing. He has still never gotten it. So it was a mild case, and, you know, whatever, but this was her first time. So glad that we got through it.
Justin Bajema 0:48
That kind of a reminder that it’s still out there.
Allison Breininger 1:41
Still out there. You know, still a thing, yep, yep. So, so, yeah, that’s kind of how things are going. Here. We had 480 degree days this week, and now this morning, it’s snowing. So, you know, who knows? I don’t know what to I don’t know what to do with life. But fortunately, I did not do any yard work, because now it’s covered. It’s great. How about you? How are you this morning?
Justin Bajema 2:07
I’m doing okay, life is just kind of, I don’t know, it feels a little bit like just kind of slogging through things. With the mental health stuff has just kind of been a little bit of a drag, so getting through it, but, yeah, wishing that there was more improvement happening,
Allison Breininger 2:28
I’m sorry that it seems like time after time after time. You know, it’s like the same headline for you, and then, you know, we just hear it once every two weeks. But for you, you’re living it every minute, and that just has to be exhausting. So I appreciate that you share that with us so that we know that, like, there are people, lots of people, who they’re living through with this constantly. And you know that it’s not just like, oh, it’s really bad every once, and you know what I mean. So I know I just appreciate that you share that with us, and I’m sorry that it is this really constant part of your life.
Justin Bajema 3:06
Thank you. I mean, it’s not solving the issue, but like, the morning walks with Mo, it’s light out again and the birds are singing. So like that, at least is, I don’t know there, it feels hopeful in some sense, like the seasons changing as a reminder that, like, how I feel right now is not how I’m always going to feel as well, like I have been in places like this before, and I have not, and I have gotten out of those places, and yes, that I’ve gone back, but like, things are not always the same, and, you know, I’m not going to be stuck here forever. So that’s a little helpful.
Allison Breininger 3:46
I mean that’s a beautiful perspective. It’s really healthy that you’re able to hold on to that, because I would imagine that typically, in the middle of the quote, winter season, right, that you might be like, and this is it forever.
Justin Bajema 3:59
Well, yes, there’s a lot of that too. Sometimes I’m not, I’m not gonna lie, yeah. So that’s happening. We do have something exciting coming up in this coming weekend. We’re going back to Spokane to visit our friends farm for the weekend. There are new lambs and piglets which is going to be exciting to see. But, yeah, these are, I mean, these are friends who, when we needed to move in with Sarah’s parents, they came from Spokane to help box up our stuff and, like, coordinate people and trailers and everything, trucks to haul stuff. And so they’ve been with us, even at a distance, through a lot of this, you know, these hard years. And so it’s great to be able to, like, physically, be in the same place with them and spend time with them. And I’m really looking forward to that. And kind of, yeah, French friends can make a big difference in this journey, and so maybe that’s something we can talk about here today, is kind of friendship and how, how that can be a real boost. And also, sometimes it doesn’t really pan out the way we wish it did when things get hard.
Allison Breininger 5:17
That makes me think about, I’ve heard this phrase like firefighters versus carpenters. So typically, that, what that has meant is that, like, the firefighters show the people sort of, like, what your friends did years ago, like, they’re really good in the emergency. And they’re like, I’m gonna come in and we’re gonna organize the crew, and we’re gonna get the trailers, we’re gonna box up. Some people are really good in that, like you know, hard moment. Other people are better at, like, sort of the slow building, at the like, day to day, sort of like still checking in, even though things are quiet. I’m gonna bring you the lunch, you know, like that kind of thing, and that we we need both kinds of people. And it sounds actually like you have found this magical unicorn that these friends of yours are both. That sound accurate?
Justin Bajema 6:03
I think so yeah.
Allison Breininger 6:04
Yeah, and so, but, and we need both kinds, right? But I think often what happens is, you know, especially with something like a cancer diagnosis that I have heard, is like, the thing that rallies people more than anything else. Because people get it. So you get a lot of firefighters in that moment. You get people who are like, I’m gonna start a GoFundMe and I’m gonna start a meal training and I’m gonna do that. Which can feel great. And a cancer diagnosis or chronic illness or rare diseases are often long, right, long term. And we need those carpenters too. We need those people who like, remember that we still exist, even when, like, the house isn’t on fire. You know what I mean? So had you been familiar with those terms that you heard?
Speaker 1 6:47
I hadn’t. That’s the first I’ve heard that. And I like that analogy. Yeah, it’s so true that there are and, yeah, we absolutely need both. Yeah, it’s interesting. We haven’t had as many of the like, firefighter moments, I guess, and so I haven’t witnessed that as much. I mean, certainly this move that we had to do, there were people that showed up for that, sure, but when it’s like a gradual decline and it’s just there, what that? Yeah, so it doesn’t feel like in our story, we’ve experienced that as much. But certainly there are the people who are the carpenters who have stuck around and continually, like, checked in and stuff and that those are the people that really you cherish and that keep you going. And because it, like we have, you know, allude to a lot, this can feel like a journey that is so you’re alone, you’re on your own. And so like having people who are reaching out continually and not forgetting and yeah, it means everything.
Allison Breininger 7:50
It sure does. Just remind us, how many years has this been for you?
Justin Bajema 7:53
I think this fall, it will be a decade.
Allison Breininger 7:55
And so for those carpenter friends, like, can you think of any examples of something that someone has done that has felt helpful along the way to help you know that, like, they still remember that you exist, right? This is hard.
Justin Bajema 8:12
I mean, it’s things like, even after like, time and time of like, I’m not able to go to an event, or like, you know, friends are going out for beers and, like, I can’t get away to do that, necessarily, but to keep getting invited, and I think that that’s, I think some people maybe don’t want to keep getting reminded of that. And so, yeah, for me, that was, that was meaningful, sure, but, um, that kind of thing. I know we’ve talked about it before, but when I couldn’t go out for breakfast with some friends, they were like, Hey, can we bring you some takeout? And that was something that made me feel connected. It’s just those small things of like still reaching out, still knowing that they realize you’re still there, asking how things are going, asking how you’re doing, not just, hey, how is Sarah doing, but like, remembering that this is also a challenge for me. And like, that’s means a lot.
Allison Breininger 9:23
We have a handful of friends who just so beautifully, like, every, I don’t know, every few weeks, or once a month or something, it’s like, and sometimes I even think, like, do they have this on their calendar? Like, they’re so great that they’ll just reach out and say, Hey, can I, you know, thinking of you all, can we bring, bring dinner, and either I drop it off, or I can stay, if you’re up for that, or whatever you’d like. You name what it is, you name the day, you know what I mean, and just like, beautiful. And of course, they’re our favorite people. You know I want, I don’t always gonna say anyway, but I mean, it’s probably the combination, right? Yeah, right. They’ve become our favorite people over. Years, partly because of this, and because it’s like, they’re just always thinking, you can tell that we’re always on their radar. And that they’re like, Okay, when we can, what can we do for you? What can we whatever? Or a friend who will just say, like, hey, I can I come over and bring coffee and again, always like, giving the option of, I could leave it on doorstep if that’s what you want for the day, or I can come in if that’s what feels comfortable. You know. And so it always feels like this, the pressure is off because you and I were talking this morning off air about, like, calendars and how it’s hard because we never know how we gonna feel and how everything’s gonna go. You know, these are people that I don’t worry when I see it on the calendar, because I know that at any moment, I could be like, yeah, actually, just leave it on the doorstep, and they’ll be like, great, no problem. Like, they get it, and they even build that in to the invitation so that it can just be like, Nope, we don’t have to see us at all. We just want you to know that we’re here. We’re thinking of you. And it’s like, oh, thank you. And so, like, I would say there are three different people I can think of who have been these carpenters for us. And I think with that like I have, I’m picturing one that, like, we have pictures with him throughout and, like, a picture of he and Sean on the couch together, and Sean was, like, hooked up to an IV pole. And I took the picture because it was just so clear. I mean, Sean’s super casual and comfortable with that stuff anyway, but you could just see how comfortable both of them were. And it’s because this friend has been around for so much, yeah, that it wasn’t this, like, Oh, should I hook up to the IV, watching it? Well, well, right here, ooh, I don’t know. It was just like, no, like, Ben’s part of the family, right? And so it’s not, you know. And so that’s part of it too, is having the comfort with those people to be like, we can show up, however, it’s not, we’re not gonna clean the house or comb our hair, not do the medical stuff or whatever when they’re here, because they’re just, they’ve been around, and they continue to be around, you know. And I realize that we it’s probably super rare and amazing that we have, I mean, we have many wonderful people in our community, but there are these three that I’m thinking of today that have just been like, steadfast is, I think, a good word, right? You know, throughout.
Speaker 1 12:10
And I think fortunately for both of us, like we have people you know that we were talking about, who have stuck with us and who are in this with us, that we’re not just feeling out on our own, and I know that that is not the case for a lot of people, and maybe that’s hard for some of you listening to hear us talk about that, and I want to just acknowledge that your hardship as someone who’s listening. I’m sorry that people haven’t stuck around, and that’s terrible. And so, like, what is, you know, your experience talking, because you do a lot of work with caregivers. Like, I’m sure you hear stories about that. What do you tell people?
Allison Breininger 12:58
Yeah, yeah, I think you’re exactly right. Because I, you know, I mentioned these, these couple of people, but I think, and for us, we’ve been in this for so long that I would guess, if you had talked to, like, 12 years ago Allison and been like, Who do you think’s gonna stick around, I probably would have had a different list and I’m sure there are people who are just poof, like, like, are not, couldn’t, couldn’t, couldn’t hack it. And I know that that happens to people a lot, that we have people have good friends who are like, whoa. This is not what I signed up for. I signed up to be with friends, with someone who can, like, go on a trip and go get pedicures and not talk about sad things all the time. And so I think that almost everybody who has gone through a hard thing like this, who’s caregiver has lost friends. Has friends who who either poof, disappeared, like just stopped coming around, stopped calling, stopped reaching out, or who maybe stayed, but stayed in a way that was not helpful. And I don’t know which is harder, right? I mean, the second one might be harder in a way, because if they’re gone, they’re gone, and that really hurts, yeah. But sometimes, when they stay, but continue to be like, I mean, I’ve heard of people who have said that their friends have been like, Can we just not talk about it today, you know, or, or just continue to say, like, really insensitive, hurtful things you know, and just not getting it. And so I think both are hurtful, but in separate ways, because, like, we don’t want to stay. I mean, this is not the life that we picked, and yet here we are. And so for the people our support, like, we think about the rings, for our rings to be like, Yeah, I’m out. Or like, Yeah, I’m gonna dump on you. You know what I mean? Can feel like, ah, so hurtful. And like, even more, like, we talk about how isolating caregiving is, and even more isolating to see your friends say these things like, oh, well, I’m just gonna go on this trip next week and you want to come? Or, you know what I mean, like things that are so off the mark, you know.
Justin Bajema 15:03
What can be hard about people who disappear is that like, especially like with social media and stuff, maybe you still see what they’re doing, and you see them out living this carefree life, and you’re not in that place, and it feels like you may never be in that place again, and that’s hard. Another like thing that you know we experience, I’ve experienced, too, is that, not because of the fault of anyone, necessarily, but like, you can just kind of lose access to a social circle, like if your friends, if you have friends that are around a specific activity. Maybe they’re not like your close friends, but like, you have a hobby, and there’s, like, you meet and do that thing, you know, I experienced that with, you know, I would did a lot of home brewing beer, and there was a club in Bellingham, and I spent a lot of time with that club, and new people in that space, and the friendships didn’t necessarily, like, exist beyond that space, and that’s fine, like, that’s okay, but, and no, through no fault of anyone, like, when Sarah got sick, that just wasn’t something I could participate in. And so, like, I lost that social circle for a while. And, and that was a space where I think that would have been a, you know, I’m thinking, because I think I did kind of try to keep, you know, being a part of that as Sarah started getting sick, and it was a place where I could not be a caregiver, not necessarily get into that stuff and exist in my own space that wasn’t defined by this role of the caregiver, that there was a separate sort of shared thing bringing us all together, and that was a escape from that. And, you know, I’m sure that other people have similar things like that. Maybe it’s a, I don’t know, like a fitness class you go to, or your, I don’t know what a you know, you have a reading group or book club or something, and it’s, it’s not that they’re necessarily your, like closest people, and so we don’t necessarily expect them to be the people rallying around but like that can go away, and that’s hard.
Allison Breininger 17:21
I think the hobby part is half of it that we might think of, but I think you’re so right that, like the people part and the escape part and like, you were just in the beer brewer or whatever you call it, and not just in the caregiver in those situations. And it’s making me think about that too, because even when I used to, you know, have my big old job, like by the end, a lot of people knew, you know, but I think I was in more spaces with people who this didn’t define me. Um, whereas, like, now it’s, this is, like, part of my job. And so I love that, but it’s also making me realize, like, I don’t have spaces right now, where I’m not known as Allison the caregiver, you know. And I think there is something like sort of freeing, you know, to that of just the sort of almost the anonymity. It’s almost like a like a theater, like, it’s almost like trying a different role. Like, you’re almost like putting on a different thing, you know. And sometimes I used to do trainings in my old life too. And, you know, it was almost like I would step away like Sean would be, like in the hospital. I would like go from the hospital to, like presenting to, like, a room of 200 people, it’ll almost be like I went into character,like I am not the caregiver right now. I am this presenter, and I am this early literacy expert, and I’m not thinking about what’s happening 20 minutes away at the hospital bed. And it was like, almost this sort of almost this sort of like, escape thing to just be like a totally different person. And it would throw me off, because sometimes I get a break, or at lunch, someone would come up and be like, how’s your husband? And I wanted to be like, why are you messing with my my thing, right now, friend, can’t you see I’m in costume? Like, so I think that’s an interesting thing to think about, is, is that that having that space and, you know, like, the last thing the caregivers have is free time. But I just wonder, as we think about ways, like we’ve talked about micro moments and whatnot, like, what are those micro moments of spaces and times and places where we can just be kind of, I mean anonymous is maybe the word, but also, like a different character, you know what I mean? Like, I think there’s, I know we’re not talking about friendship necessarily right now, but I guess I we are, though, because it’s those, I think that, you know, and I think a lot of us lost this during COVID. It was like the acquaintances part and how you don’t think about all the people you see during a day and the interactions you have, and, hey, how are you and isn’t the weather lovely and how that’s part of what feeds us too. And when we were just in our houses, we were missing out on those pieces as well. Do you ever think now that I know that, you know, knock on wood, sarees doing quite well right now? You know. That something you would ever consider going back to is the brewing?
Justin Bajema 20:04
That’s interesting you say that because I’m in the process of, like, preparing to kind of offload a lot of that stuff. I think, oh, okay, it’s a hobby. As a hobby, it’s just, it’s a lot of work, and it’s, I think part of it is learning, for me, learning that like, what I did before doesn’t have to be what I do now and, like, I can change and do different things, but I am still. I’ve been dipping my toe back into that community. Is just like seeing those people again, and that’s been really, really nice.
Allison Breininger 20:35
When you go on, like, a birding trip, you know, and you are with a community for a day or two, or whatever. Do you tend to say, like, here’s my life situation. Or are you Justin the birder? Or do you ever bring in Justin the caregiver to that?
Justin Bajema 20:48
In those situations, I am just the birder. Or, you know, I’m not someone who with new people or whatever, don’t get into my life story very easily. I tend to stay pretty private in that sense, you know, and that’s fine. I think, especially in a situation like that, where these are strangers you’re seeing for a day for sure. Where I think that that has maybe not served me as well is, you know, like with work when Sarah was getting sick, like I didn’t tell anybody what was happening, and so no one around me knew. And it’s not like I was, you know, best friends with my co workers, but it’s like it just kind of felt this like isolating disconnect. Because, you know, yes, there was this sense that work was a place where I could not be a caregiver, but it’s also this, like, I’m in this horrible situation, and like all of these people around me have no idea, but it’s my fault that they don’t, but also I don’t want to get into that with them. And so it’s just kind of like, that’s the situation.
Allison Breininger 21:58
No, I hear that. I hear that, and I get that. You know, there are people have to make that decision at some point about, like, do you share this with your co workers, with your employer, with your people, or not. And I think there’s, we talk a lot about, like, if you don’t, I think you’ve said this so many times, like, if you don’t tell people you’re struggling, they can’t help people. But then sometimes there’s also that, like, oh, now everybody knows, you know, like, we’ve been having these Negative Space launch parties, and we’re gonna have a neighborhood one with our neighbors that we’re friends with and I don’t know how many of the neighbors really, I don’t know if they, I don’t know how many of them know about what Sean’s like, you know, like, they see us walking, and they know about the dog and whatever, but like, and so I think it’ll, it’ll be interesting to see. And I have some mixed feelings about this, about like them, kind of knowing and like them, like, looking at our whole house as they walk by differently, of like, ooh, right on in there, you know. Whereas it’s kind of nice to just be, like, known as the people with the cute dog, you know, like, it’s interesting. It’s so funny. This was not a direction I thought that we would go today. But I think the acquaintances part is, is a big part of this friendship you know, and like, how we show up in that way.
Justin Bajema 23:12
I do want to go back to though, the people who disappear in, the people place a point, because I think that, like, that is a experience that I think, unfortunately, most caregivers probably go through. And I just want to make sure we have some space to acknowledge the pain around that, like to like, I’ve, you know, I’ve, I’ve heard stories from caregivers that, like, everybody just vanished, and like, you’re in this horrible thing, you’re trying to stay afloat, and it’s just like, crickets. And whether that’s because, it’s kind of baffling to me, like, where they all go? And I’m sure that there’s a variety of reasons. And some of it is like discomfort. Some of it is like the fear of not knowing what to say, saying the wrong thing, and all of that. And it’s just like that’s something I wish people could get over. And so, yeah, that’s just, that’s tough. And then you’ve got people that stick around and you’re grateful that they are still there, but yeah, it’s just kind of like, if they’re not, if they’re constantly, like, I don’t know, just not saying the right thing, or, you know, dumping on you, or that’s tough too, because you don’t want to, like, push people away, because you need people, and you need support, and maybe they’re but it’s you just wish they would, like, get it a little bit better.
Allison Breininger 24:54
Totally. No, I’m glad you brought that up, because I think that’s a thing, right? Like, at what point do we say? Okay, do we put up some boundaries? Or, at what point do we, like, you’re right, it’s so isolating, and you kind of want to gather all your people. But if there’s a person who’s toxic or really unhelpful, or every time you talk to them, you’re worried they’re gonna just say something that’s gonna really make you cringe or hurt your feelings, or, you know, like, at what point do we, you know, cut them out? And I think that’s a hard thing, because maybe they’re the person that does show up and rake your leaves. And so, yeah, you need, I mean, I don’t want to be callous, but you need support, but if it’s hurtful in that way, you know? And so how do you put up those boundaries? And I think we all sort of learn who arethe people that are really in our circle, you know, and that we can open up to, and we can really share the hard stuff with, and who are the people that we just keep at surface level and are like, Yep, it’s a hard day, you know. And I hate that we have to, sort of, you know, triage in that way. But I think it’s for self preservation, for sure that we have to do that, and so, and I think there are times that you and unfortunately, sometimes this is with family members, which makes it even harder, but that you have to maybe set up, put up a boundary, and like, we’re not going to talk about this, or I’m not going to engage with you anymore, or I’m you’re not going to come over, you know, and like, another job for you to do as a caregiver. Sometimes, like, you don’t have time for toxic relationships in your life, and that can just feel so hurtful, because maybe it’s someone who, like, back when both of your lives were just hunky dory, and then your hardest problem was, I don’t know what, what regular people’s problems are. Been a long time since I’ve been a regular person. And so when you were on both on that same kind of level together, like you were a great match, and just are not anymore. And that can feel hard to sort of see that your person and that person in a different light.
Justin Bajema 26:55
Yeah, I wonder. I don’t know they’re, you know, people who don’t want to get into it with you, and you know, are maybe not a good fit for that role. Maybe they can be a person who you go and have dinner with them, and it’s like an escape sense, like that’s a person who fills that role. Because we need we need that sometimes we need people who are going to be there with us when we’re struggling. We need people who are maybe we don’t talk to them about stuff that’s going on in detail, but there are people who are showing up and raking your leaves and bringing you dinner and things like that. Like, there’s so many different roles and levels of your like social group that, like, if someone is missing the mark on something that you know, maybe that’s okay, and they can be a little bit in, a little bit further out circle or something. And like, it’s difficult when things have to shift like that, and when friendships change, but it’s also okay for those roles to change, I guess.
Allison Breininger 28:06
And I think we have to think about the different buckets that we all have, needs that we need to be filled. Because another piece that we haven’t talked about is, is the the sort of the friendship that we the pieces of a friendship with our spouse that we might lose a little bit, right? And so if before your person was like the person that you talk to about all the hard things, but now maybe they are the hard thing. And you don’t really feel like you can say that to them always. Can you fill that need with a different friend? Right? I think a lot about something that Jane said in our last episode, where she said something about when your person was right there with you and in the side car, she said you’re making all your decisions together, and you talked about everything, and now suddenly they’re just like, not available because they’re so sick, and you’re doing it all on your own. And so sometimes it’s like our friends can come in to fill in some of the needs, that maybe our spouse or the person we’re caring for, that role that they can no longer fill. And same thing with some friends, right? This, maybe this used to be my friend that I talked to the hard about the hard stuff, and I’m realizing she can’t handle it. She’s just gonna bright side me every time. So instead, I use her as the friend who just wants to talk about gossip or TV, you know what I mean. And so to see it as, like, nobody’s going to be the everything.
Justin Bajema 29:27
And that’s unreasonable for one to be the everything. Like, for it, for things to function well, like there’s multiple roles. And you know, we need multiple people in our lives to fill and meet all of our needs.
Allison Breininger 29:40
It’s just that might have to shift around a little bit, you’re right, and it might not be the same as it was before. And I think something that’s so hard is that once we’re in it, I think we’ve become so sensitive to like to what it is that caregivers need, that we end up being the ones that are amazing for other people. Then because we’re in it. And so then it can be even more frustrating when someone who isn’t in it is so off the mark. Because we now can see with all this clarity what is needed and what should be said and what shouldn’t be said, whereas probably 15 years ago, you and I said dumb things all the time to people.
Justin Bajema 30:18
I’m sure I have.
Allison Breininger 30:21
it’s not our friend’s fault that they don’t get it. I’m glad, in a way, that they don’t. But I have a really great friend who says, says that a lot like, I have not been a caregiver, and so I’m not quite sure what this might feel like for you, and I imagine you know, or whatever. And so yeah. And so she sort of puts it out there and acknowledges that and says I’m still gonna try, but I just haven’t been in these exact shoes, and so I, you know, don’t know yet how that feels, but I know I will at some point. And so until then, I’m gonna try, and if I get it wrong, I’m sorry, and, you know, I just sort of appreciate that.
Justin Bajema 30:54
Yeah, for her to just be upfront about I’m trying, and I may get it wrong, and we’re in this together, and we’re gonna learn how to do this.
Allison Breininger 31:06
So I think the the other bucket of friendship that is the coolest is friendships like ours right? So if our spouses did not have these illnesses, you and I would not have met, and I think of so many people through and a lot of them I’ve never actually met in person, but I feel like they’re like, so close through Instagram and whatnot that we’ve all come together through this thing, you know, and even now, we have this support group that I do, and I feel like it’s becoming like this whole family, and we’re kind of get to know each other and and any listeners, we would love for you to come we’re going to do one about this episode right now. And you know, we would know any of those people, and those are the people who get it. I mean, I love sitting in that Zoom Room with those folks, and someone says something, and the whole Zoom Room nods. And you can just see the person talking about, like, oh yeah, the room full of people who get it, you know, and so in the way that the friend I was just talking about says she can never get it, and that’s okay, she can feel a different in my life. But to have this group of people, internet friends, who really do get it, is really a beautiful part of this, part of being a caregiver that I am just grateful for. I’m grateful for social media for it, because we have this whole community, you know, and are connected in that way.
Justin Bajema 32:31
Yeah. I mean, that’s how I like finally felt seen as a caregiver is getting to know, I mean, you and others online who were caregivers and doing the same things, and saying things that, like, wow, that I understand, and that resonates with me. And no one has ever acknowledged that in that way, that like and it’s this tough thing, because it’s like, on the one hand, I wish that neither of us were in a situation that required us to to be caregivers to have gone through this, these experiences, but it’s been so enriching to have the friendship.
Allison Breininger 33:07
I mean, there’s this double edged sword of this community thing, right? And especially for those of us whose people have a terminal diagnosis. That then we the the heartbreak is so much higher, because we are friends with people whose lives are really hard and whose spouses or people might pass away, and then we’re living through this tragedy with them. And so, like the the rate of that is so much higher because of the friends that we have. And so there are times that you have to sort of decide, am I in it like, am I am I paying attention to all of these stories? Am I there supporting all the people, or is it too much? And do I need to go hang out with a friend who only wants to talk about TV shows? And both are fine. Because I think we can get so ingrained. And I think especially with like the Fanconi Anemia community, it’s a really small community, and you can get really into really into following everybody’s stories. And, I mean, you can just get pulled in to these really hard stories, right? And that can become like everything you do. And sometimes we need that can be comforting, to be like, these are my people who get it. And then sometimes it can just be like, I need a breath, and I need to take a step back. And, you know, so anyway, it’s just like, sort of a paying attention to what it is that you need in this time, and to see, is it feeding you or is it not in the moment? If that makes sense.
Justin Bajema 34:34
One thing I’m curious about how you, how you relate to this is, like you have friends who are caregivers. And you see they’re going through a very hard time, and you know exactly what would be helpful. And maybe there’s multiple people going through this hard stuff, and you have limited energy. And how do you balance the like, I can’t take on one more thing. But I know what would be helpful, but I also have to entrust them to their community. How do you how do you balance that? Because I think a lot of us as caregivers, like, we like, want to help. And if we understand the situation, it’s like it’s tough. It’s because we can’t be there and be the one for for everyone, because we’re also in it with our person. We’re exhausted and we need time for us. Like, if you’re constantly giving and giving and giving, whether that’s in the caregiving role that you’re in, or, like, friendships and people you know, and maybe even just acquaintances, that it’s like you see this happening, and you’re like, you want to be there, but like, you have to alsomake sure that you can have time for yourself and, like, fill your own bucket.
Allison Breininger 35:57
No, I’m so glad you brought this up, because it’s 1,000,000% true. I mean, I partly because, you know, I know more caregivers. But also just with general people in my life that I’m like, oh, this friend’s dad just had a heart transplant. Oh, this you know what I mean, like, I see those situations, and I feel like I like, and laser focus, see right through, just be like, here’s what they need. And you’re right that I want to help all of them, and I have to stop myself. I like, I actually have to stop myself, because I could just be reading, carrying bridges all day and sending meal gift cards and writing boxes all day. And so this is kind of funny. I’m gonna admit this, but sometimes what I do, like, I did this the other day, there was somebody that I should go over there and do something. And I thought, Allison, you cannot. You cannot. And so I did the thing that I hate, which is, I said, let me know if I could do anything. Which I know is a terrible phrase, right? But it’s like it was a way for me to feel like I put it out there, so if they really, really want something, they’re gonna say it, knowing that caregivers will not, because it’s a terrible question. But also feeling like I couldn’t say nothing. And I saw myself doing it was like, oh, what are you doing? But it was like, sort of this, like, happy medium. I tried to find for myself, of like, if it feels really desperate, then at least my offer is there, and maybe they’ll take me up on it. I’ve said something, but I also didn’t do like, eight things that I know would have been really hell, and that feels terrible to, like, know what someone needs and not give it to them. But like you said, sometimes we have to entrust them to their community and hope that they have a community. I mean, it’s hard too, because now this is what I do for my job, these boxes that I that really can feel meaningful to people, and I just want to like, but I can’t, you know, give away boxes. And so I’ve often, like, seen people like post, and I just want to be like somebody. That would be really helpful, like I want, and that’s part of what I’m trying to do through this organization, is educate people about how to show up for others. So it doesn’t always have to be me, but it’s hard because I could be doing that all day, and I want to be doing it all day. What about you with that same question?
Justin Bajema 38:14
Yeah, I, I think mostly for me, it comes through like feeling guilty that I’m not doing more in all of those situations. Like, it’s not that I jump into them all, but it’s like feeling like I should and like, that’s kind of and like you said, you’re just also aware of all of the difficult things that people are going through around you, like, somehow this experience, and I’m sure other tragic experiences or difficult experiences, it wouldn’t have to be a caregiving thing. Like when you go through that and you understand loss in that way, or the grief, or all of that like you were just it opens your eyes to that all around you. And I think about that a lot. What before this? Like, how much I just didn’t see that, and now it’s like, you see it everywhere, all of the difficult things that everyone around you is going through. And it’s the want and to help is there. But like, I just don’t have the capacity across the board for that. And sometimes it’s you know, someone you sort of know, but it’s like, they’re going through this horrible thing, and you’re just like, it’s easier if you know that they have a community around them. And you’re just like, I know that there are people who are there. They’re going to take care of this. I can just know, I can entrust that to them, but also it, you know, it you end up reaching out more and you know that can take energy from you. Also sometimes maybe that builds new friends and strength. Influence that too. And it just, it’s a situation with this that where it does feel like we as caregivers need to stick together because I because we understand.
Allison Breininger 40:18
And I think you know, really, what any of us want the most is to be seen and so something that doesn’t take a lot of time and energy is just a text, right? I’m thinking of you. I heard the latest, you know. Just want you to know that I’m over here and you’re in my heart, or whatever you words you want to say, no need to respond. Oh that but and often, then, especially if you put no need to respond, they won’t respond, they won’t, but that little text means a lot, and it wasn’t like you spending three hours making a lasagna. Like somebody else can do that, but you probably have the words that they don’t because you do get it and so, so I think that’s one really important way to be a carpenter, to continue showing up throughout with those little easy texts that can be really meaningful.
Justin Bajema 41:05
And I think too, to remember that if this is like they as a caregiver, also get that you don’t have the capacity, to be there in every way for them like people in my life who are in those situations, like, I’m not expecting them to, like, show up in these big, huge ways, like giving of all their time, because I know that they don’t have that the resources for that. And, like, remembering, remembering that you both understand that or they, they understand your situation as well. So supporters, yeah one, I think if you are supporter and you’re listening like you have stuck around and thank you for doing that, and I hope that this has been helpful to listen in on, to see where you can plug in how you can better see what role in the person that you’re supporting you can kind of fill, and maybe also what advocating for them amongst their social like helping do some of the work. Because a lot of you know, we always hate that so much of being a caregiver feels like we have to do more work to help us have a better situation. And so maybe there’s something there.
Allison Breininger 42:31
So maybe friend friends who are listening, if that’s like a you know, if people are planning something to say, hey, let’s invite Allison. Make sure she’s on the list, and also make sure she knows that there’s no pressure if she has to cancel. Yeah, you know, same thing I just said about the text. Like, even if you aren’t the carryover and you don’t get it, like, if you’re a friend, send those texts. You know, send the like, I’m thinking of you. No need to respond text. That’s huge. Think about where your strengths are. Are you the person who like you? You feel uncomfortable having the conversation, but you really want to help, so maybe you’re the person who shows up. You know you don’t have to be all the things as a friend. But think about where you you know, where’s your skill set, where’s your comfort lie, and is that, you know, in, like, taking the dog for the walk? Is it in sending the text? Is it in bringing the meal? Is it sending a card? Is it, you know, like, what is it so that you can, you don’t have to do all of them, but think about where it is that you, are you the carpenter? Are you the firefighter? And how can you keep showing up? And to remember the rings then, and what that means as a reminder, is that you comfort in and you dump out so you can go to a different friend and say, woof, that was really hard on me to see what’s going on at their house, but you don’t get to say that to the friend that you’re supporting for them. You just comfort them.
Justin Bajema 42:42
I think also, if you dropped the ball in the past, or if you see now that you didn’t show up when it really seems clear that maybe you should have or, you know, you just didn’t handle the situation as best you can that happened in the past. Don’t let that keep you from, like, trying again. And, you know, talk to the person you’re supporting and say, Hey, I’m sorry that in the past this happened, but I still want to be there to support you going forward and like, that would mean a lot to hear.
Allison Breininger 44:38
It’s never too late. And I think it would be even more meaningful to say that, you know, I’ve realized some things, and I know now more or you know, and I’ve had people say that now, that now I’m a caregiver, and I realize, oh, man, I really didn’t show up for that friend of mine, you know. And so we just don’t know what we don’t know for sure. So to say, wow, I’m realizing that now, and here I am you know. Well, I have to say that I’m so grateful for the friendship that is the two of us absolutely and that we met online, and then also that you were like, maybe we should do a podcast so that we have gotten to know each other so much better. And I just think having this community of caregiver friends is huge huge in my life to know that there are people who get it that I can reach out to and that I count you too among that. So thank you for for your friendship.
Justin Bajema 45:33
Thank you as well. It’s you have helped me in a lot of ways get through these last years. So thank you for that.
Allison Breininger 45:43
And other friends who are listening, come join us. Join us at a support group. Watch Instagram for the date of when that will be. But it just is a really lovely, intimate setting where we get to talk. We’ll get to talk about friendship next time, and will it would be great to have you there and as part of the group.
Justin Bajema 46:05
Where do they find us on Instagram?
Allison Breininger 46:07
@insicknesspodcast. And I’m better even at posting on my own, which is @negspacelife, for the negative space. And so that is where I do a lot of the posting about the groups as well.
Justin Bajema 46:21
You can also send us an email and say, hey, I’m curious about these support groups. And our email address is at the end of the episode, and it is also, is it insicknesspodcast@gmail.com?
Allison Breininger 46:33
Man, I have no idea. Yes, you can email us, and then we’ll put you on the list, and we’ll put you on the list, and then I email those folks every time a support group is coming up, so they’re free and they’re online, and we got people from multiple countries joining, and it’s just really a beautiful thing. So we hope you’ll, you’ll join us there. And I want to say, if you are listening today, and you’re like, but my friends have left me that we’re here, we’re here to join us. So that we know that non caregiver friends can sometimes miss the boat, and that you might be feeling lonely and isolated, and we want you to join us and be here with us, both the two of us, but also the other group, so that you can have people who get it done. All right, here’s to friendship.
Justin Bajema 46:58
Here’s to friendship. You’ve been listening to in sickness. Find us online at in sickness dot care, or on Instagram at in sickness podcast. You can send your questions and comments to insicknesspodcast@gmail.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.