Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning. Allison, how are you doing? How are things going over in Minnesota?
Allison: Well, let’s see. So last we talked, I was about to have the Mohs day, right where I stayed home. And so first of all, just appreciate all of the love that came in from that episode. And so it was. It ended up being a tricky day, because in addition to having it be this Mohs day, and me being home for the first time, I the night before, had this, like the worst migraine of my life. So I think, in a way, it was good, because I think if I had been planning to go to Mohs and then had this migraine, I would have, like, panicked and what am I gonna do, and how do I get covered? So it was great that I had already sort of set the stage. Yeah, so it was a super hard day when he was gone, but it was also sort of exacerbated by the fact that I felt like garbage because of my headache, and so I’m really glad that I did what I did, and then I stayed home. He said that his doctors and team stepped it up big time and were very caring and compassionate. So I was wondering if I was still gonna have, like, the Mohs hangover situation that I used to do, even though I wasn’t there, because still, like, the emotions of the day, and then him coming home and being covered in bandages and all the things. So it was a little hard to, like, peace out, because I had this migraine hangover as well. Yeah. So I will say that it was a pretty rough week, like recovering just with the soup of migraine plus Mohs plus all of it. So yeah, but I think it feels good to know, because that day they were like, Okay, let’s schedule the next one. So to know like, Okay, I have a plan in place, and felt really proud of myself. And it was amazing to have people like you in my life who, throughout that day, were like, You made a hard decision. This is a good decision. You know what I mean? Felt really helpful, good. So that feels like a huge step that we do. Yeah? So that feels good on the other side of things, my kid just turned 18. Wow, so that just feels a little bit mind blowing, yeah, so we got to celebrate with her, and she’s just the best. So that was like a lovely thing she had sent Sean, because I had texted her and said, just so you know, Dad had most and she had sent him the most wonderful text, all on her own. Like, I didn’t tell her to Yeah, and I just thought, you know what? Like, and certainly I don’t really totally mean this, but like, if she flunks out of college, don’t, don’t do that, if you’re listening, right? Uh, but you know what I mean, it’s like that’s what matters, right? Is that she, on her own, sent this amazing text to her father, who was recovering from surgery, and I’m like, That’s it, that’s that’s what, that’s it to be a human. So anyway, she’s the best. So that has been a bright spot for us in the last couple of days. Yeah, how about you?
Justin: It’s been a busy week. Week and a half, we just kind of, somehow a lot of social stuff just kind of stacked up. There’s sometimes, there’s those weeks, and Sarah had even more things that she went out and did than I did. And so we had our last we went out to dinner with some friends last night, and which was absolutely wonderful. And so we’re looking forward to keeping things as chill and not leaving the house, just kind of relaxing at home for the next week. But it’s just, it’s incredible how I don’t know a year, year and a half ago, I don’t know anymore, like this past week would not have been something that we even would have considered as a possibility, right? The amount of activities, the amount of outings.
Allison: So both of you went out to dinner with friends. Wow, yeah, I remember when you would say, like, oh, we went to the restaurant and we picked up and we did in the car. And even that was a big deal. I mean, this is huge, yeah. And I feel like it’s one of those things where, like, you know, when you see a kid and you haven’t seen him for a while, and, like, you can see the how, how much taller they are, but the person who lives with them doesn’t notice it, because they see them every day, right? I feel like, from here, it’s like, I’m reflecting back, like, what? I don’t think I’ve ever heard you say that the two of you went out to dinner like with other people, like, it felt like this very special thing that you would sometimes save for a very special occasion. If it worked, that’s amazing.
Allison: I’m happy for you.
Justin: It’s very, it’s wonderful. It’s really great.
Allison: I love that, you know, it’s the whole like, you have to have the hard things, to have the good things, blah, blah garbage. But I love that. I mean, most people would just be like, we went out for dinner. Tuesday, whatever. But like, because you’ve had the life that you’ve had, you’re like we went out for dinner!, you know what? I mean? I just think that in our situations, we can enjoy and appreciate these things so much more than the average person, and that that does feel like a benefit of the garbage we go through.
Justin: All right. So what, what are we talking about today?
Allison: So I have had this conversation with somebody recently that has really got me thinking, Okay, it’s about the rings, the ring theory. We love the ring theory. For those who are new to it, essentially, you picture a bullseye. Typically, the person you’re caring for is in the middle, maybe your ring too, and then, boom, boom, boom, the people who are next, you know, are everybody gets a ring. You’re supposed to comfort into a smaller circle, dump out to a bigger circle, right? We love this theory. We have a whole episode on it. We talk about it a lot, um, and I think what I hear from people a lot is the disappointment or the frustration or the grief around when you write out those rings you know, or when you think about those rings often, those are people who are maybe, like, biologically related to you, or whatever that is, and that those are not always, or often, the people who are showing up for you. And there can be grief in that and then, but on the other hand, holding while we grieve that maybe somebody in ring 74 is showing up for you. And that just the fact that they are in 74 actually, in some ways, makes it even more beautiful and immersive, right, but this juxtaposition and so wondering about, do we want to think about a new version of the rings that is less about family trees and biology and what quote should be, because that can just bring us down this hole of like, why are they not showing up for me? And instead, think about who is showing up for me? So what do you think about that? What? What’s that bring up for you when you hear that?
Justin: I think that that’s a an interesting thing to think about, because it feels like, I don’t know, culturally or societally, like things like, I guess caring for someone, feel like they’re very structured around, like the nuclear family and the like relatives And that whole kind of like structure as the key group that is there supporting that situation. And yeah, there are a lot of people who, for whatever reason, don’t, don’t have that. Maybe they just don’t have family for whatever reason, maybe they live a long way from their family, and they’re just through distance they don’t have, aren’t able to get that kind of support, or maybe for various reasons. They’re, you know, not on good terms with their family, or, I guess, to maybe, as you alluded to, kind of the family just doesn’t show up for whatever reason. To feel like those are the people that you should be getting support from and not seeing it, especially probably, if maybe that relationship is already strained, just really furthering, like, just not feeling great about that situation, I could see that being A really, yeah, disappointing, grief, all of that stuff around that. And so it kind of brings the this idea of, like your chosen family, and yeah, you know, you can choose who you want to be close to you, who you want to be, the people that you, you know, spend holidays with, or whatever, like you can kind of, you can structure that a new envisioning of that based on the people who are showing up in your life, the people you are interacting with, the people you are close to, the people, um, who are there. And so I think this kind of like, yeah, it’s a, it’s a way of honoring the people who are showing up outside of or beyond, like being related to you. Friends, I don’t know, maybe someone at work who isn’t maybe a close friend, but they’re doing things to show that they’re supporting you through this experience and kind of thinking how being a little more imaginative about how you, who you put in the rings where they, where they end up.
Allison: Well, I think for we, us as caregivers, and you and I are perfect examples. We, a lot of us, caregivers, are in this online community. Because it’s such an isolating thing, and we, you know, and because of the internet, for all its flaws, this is the way that we connect with people. And so think about you and me. Like I consider you one of my very, very closest friends, and I have met you in person twice. And geographically, you live on the, literally, the other side of the country, And so, like, if I was to draw, like, the, you know, like the typical rings, I’d be like, I don’t know what number you would be in. And so, but yet, the internet has helped us find these creative, help us have this creative way of finding people. so I’m wondering if, actually, you know, originally, I would have thought, oh, it could be a new version of rings, but I think that the ring, maybe the rings in this situation are, are, are too constraining, too constrictive. I kind of want to, like, bust out the rings. And instead, it’s just like, see the people. Like, I think the rings are helpful when you’re like, comfort in, dump out. But as far as support, like, get rid of the rings. And it’s just like, here’s a pile of people. Then when you see this sister, right, and she’s not showing up for you, but your next door neighbor is right? Then it doesn’t feel so like hierarchical and it doesn’t feel right hard that this person who’s like blood related to you isn’t showing up, but this random quote, random person is because, if you think of it just as a sea of people as opposed to a hierarchy of people, Does that make sense?
Justin: It does make sense because, yeah, I think we’re in tuned to think of like family should show up first, kind of a mindset, yeah, and we don’t. And like, okay, it’s great that the neighbors are showing up, but my family’s not. If that’s the feeling, whereas, if your family’s not showing up, like, yes, you can be disappointed, yes, you can grieve that, all of that, but also celebrate the people who are and honor those people and bring those people in and include those people. And yeah, it’s okay to realign your inner circle around who’s really there,
Allison: And in some ways, like, doesn’t that neighbor, doesn’t that feel even more celebratory, because the neighbor has, like, no obligation. You know, if that sister shows up, it’s like, well, just my sister supposed to be showing up, that neighbor, like this is not, you know what I mean. And so in some ways, a neighbor or my friend Justin, who lives in Washington, right, like showing up for me feels like that’s, in a way, like, 10 times more beautiful than somebody who’s, like, quote, supposed to. That doesn’t take away. I don’t want to diminish the grief of, like, why is my sister I don’t have a sister. I’m just the vibe there, why is my sister not showing up. I don’t want to take away because there can be grieving in that of, like, really sister. And how cool. That not random anymore, but sort of random, if you look at it on paper, random. Justin in Washington State shows up for me in this beautiful way. So, like just this morning, I woke up to a text from a literal neighbor a down block, and she said, “I can’t take away the pain of Mo’s stays, however, I can help keep your dog occupied. Look on your front steps. I have ordered some enrichment toys for Mr. Winston.” and she said, “because both, I’m sure you’re exhausted and it’s hard to keep him occupied, and also, there’s nothing like the joy of watching a happy dog.” Like, “what? beautiful!” And also I was like, “Have you been bugging my house?” Because we’ve been talking about, like, he just, like, is so, like, he’s such a smart dog, and so he just needs so much in Richmond, and we’re tired, yeah? And, um. And she said, No, I saw on the Facebook page that you said, Does anybody have any dog puzzles? And so I thought, oh, I’ll just help. So, so again, a literal neighbor showed up for me. In this way, paid attention, knew it was Mo’s week, saw my post and did this thing. So in some ways it’s like that gets like, 10 times more bonus points, yeah, than the sister who was, like supposed to because this neighbor has, like, no obligation, right to show up for me, you know and so it’s like, I guess I’m trying to, and I’m probably talking to myself, or to all of us, but like to try, like, up the like, if I think about, like, a weighted score, up the weight of the score of how a. Of the people who are random show randomly showing up for us, and they get even more. That’s even more amazing than, like, the person who’s, quote, supposed to as opposed to being disappointed, like, really, my neighbor is showing up for me, but not my sister.
Allison: Be like, my what? My neighbor showed up. You know what I mean? I don’t know. What do you think?
Justin: I think that that’s a great shift to make, to celebrate what the support that you’re getting that’s maybe not coming from the quote, unquote, traditional paths or whatever. So yeah, I think that’s beautiful to think of it that way.
Allison: I do think that I want to go back for a second because they’re to the grief around the people who are supposed to because I do think that that’s it’s a thing. And I hear a lot from people who, let’s say it’s a family, and there’s a lot of siblings, and there’s one sibling who’s taking care of the parent, and the rest of the siblings are like, Oh, you got this, and then they’re gone. You know what? I mean, so whether it’s like, what, like, why are my siblings not helping take care of the parent, or why, Oh, why I’m going through this hard thing, why are my people not showing up for me. Like, either way, like, there, there is grief in that, you know. And I think especially as caregivers, whether we’re like, in any room too, and we’re like, a caregiver at heart or because we’re in this, once we’re in this, you get it and you see it, and we’re the ones that are going to be doing the kind things for other people, because we understand it. And so then it’s even harder when you see someone who’s not doing it right. And I think there is that piece of like, you don’t get it until you get it. But I always feel like, you know, it’s like a person who doesn’t have kids, who’s like, Well, my children will never eat sugar or watch television. And then, you know, five years later, they have a three year old eating fruit loops and watching Spongebob and then, or whatever. And then they’re like, Oops. But I think caregiving can be the same way. I’ve had people who were not caregivers, said dumb things or didn’t show up, became caregivers, and then we’re like, Oh, my goodness, I’m sorry. Here I am. I get it now, I should have never said this thing, or I should have brought you that, or whatever, you know. So, I mean, there’s a little bit of grace that I try to give to people to when that’s like, well, they don’t know, they don’t know. Blah, blah, but, but I mean that it doesn’t mean doesn’t hurt. you especially, I think when we can see how we would be showing up, I think that’s what I hear from caregivers. If the tables were turned I would be showing up for this person in this way and this way and this way, and they’re not showing up at all.
Justin: Because as caregivers, we’re attuned to what kind of showing up would be helpful? We know what would feel good to hear like being on the other side of it, and so, yeah, we’re very attuned to not getting those things from the people in our lives. Like we really notice when someone isn’t supporting us in those ways. And so yeah, that, if that is family, if that is close friends, you know, whoever that is, that’s hard, and that’s absolutely something to grieve.
Allison: And sometimes it can happen even that like so here’s an example that yesterday, very exciting. The Negative Space and I were featured in Real Simple magazine.
Justin: Super exciting.
Allison: So, like you, my friend, had done research to figure out, when is this article gonna come because I was like, I don’t know. So when in October, like you had spent time doing research to figure out when that was gonna happen, like you were the first person to find it. You were the one that sent it to me. Like, amazing. Another internet caregiver friend sent me a picture of her in Barnes and Noble in Philadelphia. And was like,
Justin: She had the hard copy? Yeah, nice. So you’ve seen it in the wild.
Allison: And here I am, and I’m telling all the people like, I have never met this person. It’s a person who comes to support groups and whatever. And was like, this is I’m telling all the people at Barnes Noble that I know you right, another caregiver friend who, like, I, you know, have never met in person, but I would consider one of my closest people, is like, I am weeping over here with tears of pride for you and joy, and I’m just grateful that I know you. I mean, like, what? And there’s other people who were, like, cool.
Allison: So what I’m trying to not do, because what can happen there is to be, like. Like, really, Justin did research in his spare time to figure out when this was coming out. Like, to not let that even the gap between that and other people make the not showing up feel even worse. Because it can. But instead to be like, well, these couple people had like, little to no response, but Justin did this, and this person did this, and this person did this, you know what I mean. And so it can be easy to make that, make the non showing up even feel worse, but, and I want to grieve that and also to, like, celebrate, like, these three quote, random people, yeah, really showed up for me, like my mom, like, literally started, like, driving around town, looking at stores. She’s like, I’m at Barnes and Noble. I’m at Michaels. I’m at Target, you know, like, I got the people, I’ve got people. So it’s this yes/and. It’s a yes/and of celebrating the people we have and grieving that like a person that didn’t show up, you know, and also realizing it’s not probably about me, it’s probably about them, you know, all them, blah, blah.
Justin: I think another kind of angle to think about this, you know, where do people fit in with the rings and family not showing up, or friends not showing up, or kind of how that all fits together is like who you’re, who you can feel like you can ask for help from. And you know, if someone hasn’t vocally shown that they’re supportive, or you don’t feel like they understand, like you’re gonna be hesitant to ask for help from them, right? And so often again, like it feels like family should be, or like related family, sure, biological family, or whatever should be the avenue that we had gotten our initial support from. And, you know, I could see that playing out like, especially how you mentioned a, like a sibling amongst many, who is the one doing all of the parental stuff. And it feels like, well, if we need more, like, those other siblings should be the ones to provide that. But I know that they’re not, and so it feels so it’s like I have to do this all on my own. I can’t ask for help but to look beyond family and see okay. You know, these people have been there for me through this. They’re here, people that understand, or just casting a wider net for that support, instead of feeling like, Oh, these people that should be there aren’t, so I can’t reach out for help, right? But to imagine something bigger, and to, you know, still put, put the request out there, or the call out there, and, you know, let the people who maybe yeah would traditionally be in further out rings, like, show you where they really are.
Allison: I talk about this all the time. You know, I do webinars for IANA care, yeah, which is this amazing app. And my favorite feature of the IANA care app is that you can build a team, and then you can say, I need some help. And so, and when I’m doing these webinars, there’s always people who are like, I don’t have anybody, I don’t have anybody to put on my team. And I say, I want you to think bigger. Think about is your kid on the soccer team? Can you put some of the other parents of the soccer kids on there? So that when you say, my kid needs a ride to soccer, they can show up. Do you have a place of worship? Can you put some people from there? Can you put, if you’re caring for your mom, like, can you put your mom’s neighbors on there? And so one of the things with the IANAcare app is like, you can like, specifically go through your contacts and decide who you want to invite, and/or you can just have a link and put the link out wherever you want. So when I did it, I first specifically chose people, and then I put it out, like, on social media. And what happened then was that people that I would have never specifically sent this link to we’re like, Absolutely, I want to be on this team, like this couple that we went to college with that we weren’t super close with, but, you know, acquaintances signed up to be on the team, and they have like, I’m like, some can we need someone to, like, rake the leaves? Boom. The guy is like, I’ll be right over. I would have never in my wildest dreams, but reached out to him in particular. And that’s the cool thing about the team as well. Is like, it’s not me saying, hey cousin, will you do this thing for them? And then they’ll be like, No, right? It’s like me saying, Hey, big old team, can anybody do this? And then the random, quote, random people have the opportunity show up, and often it is those, quote, random people, you know, like, we had a mom of one of Maya’s friends from childhood reached out a couple months ago and was like, I was just laid off from my job while I’m looking for new jobs. I’m also just trying to help people. What can I do for your family? And I was like, what? Wow, I haven’t talked to you in 10 years, you know. So, so just to say that, like again, it comes sometimes in these, like, really unexpected places, yeah, and if we open up wide enough, you know, and part of that is being able to being comfortable sharing your story, because if you’ve only told your siblings, right, that this thing is going on, then those are the only people who can show up for you. But if you let your story open wider, then there’s more opportunity for people to show up. We’ve been talking about this in the context of support, like, stuff, yeah. They also want to say, like, who were able to be ourselves with. Who were are most comfortable with, who were able to say the things so even the simple like, if you say to me, are you today, I know you actually mean it. I know I can say “Justin, I’m not doing well today.” and you’ll be there for it, and I don’t have to worry about what your response will be. There’s a billion other people in my life who might say, How are you doing today? And I know that I should probably just say, “Well, fine, thanks.” Because you know they’re not just I’m I’m not going to get the response that I need and that I want, or I might be disappointed in the response, or they can handle it, whatever that is. So I think that this goes beyond just logistics into emotional support, and for us to pay attention to how do we feel when we’re with some people, and sometimes when you’re with family members, that’s when you feel the worst for a lot of people. And so maybe when you’re with your family, you say, “yep, fine, fine.” And that we can grieve that and say, “Who are the people?” And maybe it’s an internet friend, right? Who are the people? Where are the spaces where I do get to be myself, where I do get to say, “this is terrible, I hate this.” You know, maybe it’s our support group. Maybe it’s like what we’re so that even if your whole life, most of us don’t have our whole life where we get to go around like feeling like we get to share, unfortunately, just because people are whatever, but if you can find those little spaces and places in which you can truly be yourself and cherish that, and then you show up on, you know, Christmas Day with your family, and you just say, Fine, fine, fine, and everything’s fine.” you know, or whatever.
Justin: I like the idea of paying attention to who you feel most comfortable, who you feel most yourself around, yeah, and that’s where to put your energy. That’s where to bare your soul. Yeah, that’s where to, you know, really go to for that emotional support, and again, to really focus on where you feel that, not that you’re not going to grieve where you feel like you should, but you don’t, but don’t let that overshadow the fact that you there are places, hopefully, where you do feel that and to if you need feel like you need to restructure things around your life so you are around those people more, or you can interact with them more. Or, you know, that’s, that’s an okay thing to do but I like that. I don’t know, there’s something just I don’t know, that we’re always aware maybe of even who those people are. But if we can pay attention to how we feel when we’re with people, and do we feel like we’re having to, like, be careful what language we use, as in, you know, trying to temper expectations around like, “Oh, they’re doing better now because, you know, you said that they were able to, I don’t know, go out to the store or something,” and it’s like, “oh, that that’s so great, that they’re better.” And that’s not how things work. Versus, you know, you could say that same thing to someone else, and they respond with, you know, that’s, you know, that’s amazing. And I know that that’s a big step and a big effort, and there’s probably repercussions from that, but to be able to, like, feel like you are more seen. And we all need places where we can truly feel seen, where we because it takes energy to like have our guard up, or to be like, sitting there going, “Yeah, everything’s fine.” Like that is, that’s taxing. It is like you leave those, you can leave those encounters exhausted
Allison: Exactly. And guess what? We don’t need more of exhaustion
Justin: Exactly. So yeah, really lean into those places where you can just exhale, and be.
Allison: And that’s, I mean, that’s exactly what I’m trying to build to the negative space, right? And so that’s what with those with this podcast, and with those support groups. I mean, you see those support groups, and people are just like, ah. Like, you can see them exhaling, and you can see they’re like this, “these are my people, and this is the place where I get to say something.” And like, when they’re new to the support group, they’ll say something, and they’ll sort of hold their breath, “okay, I said that.” And then everyone else is nodding, and then they’re like, “whoa.” And so I always talk about, like, you know, we we all need these, like, release valve moments. And so even I wish that we could, like, go through our whole lives being, like, surrounded by lovely, supportive people. And for most of us, that’s not the case. And so that makes it even more important that we find times and places where we get that release and we are able to be ourselves and to relax. And I like when, when you said, like, “it’s exhausting.” And so, you know, a phrase I like to use a lot when I we’re talking about caregiving is like, what needs to stay in this season? Like you’re already exhausted, what can go off the table. And doesn’t need to be here anymore. And so if, if usually you’re with this friend group or whatever, yeah, get together monthly, and you’re like, “This is not filling my bucket. This is draining my bucket.” Then, maybe doesn’t that doesn’t that doesn’t need to stay in the season, and maybe in a season where you have lots of energy and you could do that great. This is not that season garage. And so to pay attention to those things. If, like, your family gets together every week, and it’s truly draining on you. Like, maybe, you know is it, do you say every other week? Or do you what do you do? You know what I mean? What are the things that you can do to build in more moments and situations in which you’re feeling like you get to be yourself and you’re feeling fed and supported and loved and seen for exactly who you are? And fewer of the ones where you’re feeling like you need to, like, put on a facade and, you know, like, all of that.
Justin: If I can go back for a minute to, you were talking about, like, an IANAcare team, like this team of supporters and people feeling like, well, I don’t have a team. And then you giving examples of, like, you know, well, your parents on the soccer team, or neighbors of your parents who you’re caring for. Like, there’s all these ways. And I think that it could feel overwhelming to be like, “Okay, now I have to, like, really look around and who are all these people in all these different ways that could be part of this team that I could try to bring into this.” I think there’s a lot of things like that in caregiving, like, you start out, and if you know, you start looking into resources and all that, you can get overwhelmed by, like, “oh, I should be doing this. I should be doing this, like, this, this, this, this.” To think of, like, one small area to start, yeah. And I think, like, I don’t know, there’s a lot of kids doing a lot of sports these days.
Allison: I’m so glad my kid is artsy and not sporty.
Justin: And so I think that, like, the soccer parents and example would be, is a great, like, starting point. Like, okay, that’s a pretty low stakes thing to like, have some people help get my kid to and from soccer practice. That’s people that I can identify easily. I can start seeing if some people can show up in that way, and focus on that first, and trying to maybe do it, not try to, like, build this full team, sure, all at once. Because like you, I can see people listening, and you have an amazing, expansive group of people that support you. And I could see people feeling like that, contrasting to their experience and feeling like I don’t have that, and I’m sure you didn’t start right day one caregiving with this, the team that you have now, like you’ve been at this for over a decade. Like, yep, curating these people around you to support you in some probably in some ways, you know what? I mean. So that’s the other thing too. Is it, if you feel like you don’t have a team, start small and understand, unfortunately, it’s it may take time to get to the place where you feel like you have the support you need all around you and to not let that, but to not let that discourage you from starting for sure.
Allison: And I think something that we like to say when we’re having these conversations with folks about a team is like two people is a team. Like, you don’t have to think about like, it’s a hundred people. And so even if you can just look around. And so instead of it looking around and you’re like, it could feel really overwhelming to look around, instead of thinking of it as like a opening your eyes to be like, who in my daily encounters, if they knew what was going on in my life, would, would maybe be able to support, right? Because I bet those other soccer parents maybe, if you were like, Okay, look like my husband’s going through all the things, and he’s got all these surgeries and is that they’d be like, what? Okay, sure. Of course, we’re already driving in that direction, right? And so sometimes it’s just thinking about it in that way, and we don’t always know, like, we don’t know. Maybe some soccer parents are going to be like, too bad for you, right? I’m busy too, you know? But I would guess that somebody if they knew that was going on, right? So even thinking about my neighbor, and part of the reason that I have been able to have this expansive team is because I’m super open about it, right? And everybody, not everybody, they are not comfortable, or their person is not comfortable with that.
Allison: So I get that, but how I haven’t spoken to my neighbor in the last week, but she saw me post about Mohs and then was able to support in that way. And so also, that’s a piece about, like, when we choose to share our story, when we feel comfortable to share our story, and to share our story, it doesn’t have to be on social media, but even, like, in little pieces, yeah, people are like, when they know what’s going on, they’re more willing to help, because if they didn’t know, they’re not going to offer. With the like, it only takes one person. Sometimes it’s also even just like, thinking about the emotional component. So, like, a friend of mine texted and was like, I have a scan coming up. I got this scanxiety. It’s legit, you know, I’m really feeling it. And I was like, I’m here. I’m here for you the whole every step of the way. And she was like, “just knowing that another person is holding space for me between now and this scan, and then during the scan and after the scan, she’s like, is, was a game changer,” right for her, and so, you know, I think that that can be part of it too. Is, instead of, you know, she might not choose to tell her dad, who might not be supportive, or whatever, that she has a scan coming up, but she knew that I was a person that she could say that to, yeah, and then I was going to hold space for her in that way, and for her that that was like a, like a seismic shift within her nervous system to be like, “okay, somebody else who gets this knows that this is happening to me and is here with me.” And she was like, “I feel different. Yeah, feel different now that I shared that with you.” So it doesn’t have to be like, regularly, like, from that to like, the whole range. But again, like, she shared that with me, and not because she knew that I was a person who was going to get it. And so how can we start to, like, look for and build in pieces. Who of the people who we think will get it and can hold that space for us and can comfort us. So even if you’re listening, I’m so glad that you said the thing Justin, about, like, some people might be listening and be like, “I don’t have anybody.” So yes, I want you to, like, open your eyes wide, look around, see if there are people, and if at the end of the day, you’re like, “No, like, I just moved to this new town,” or whatever, that you – Justin and I – are here for all of you. Listeners, yeah, so, and I know that sounds like maybe weird and creepy, but like, Justin and I barely know each other. I mean, you know what? I mean, like, what’s the same? That’s how we became friends, right? And so the same can be true for you listeners is that informally, we can send us emails. You can send us direct messages. We are here for you. You can come to the support group. You can, if you want to do a like, an official coaching session with me, I would love it. I can be your person. So just know that like we’re here, yeah, so don’t leave this episode thinking I got nobody right, because at the very least you have the two of us. Yes, 100% Yeah. What about supporters?
Justin: I guess this kind of brings us into supporters. But I just wanted to mention that like you were talking about your friend who reached out with the anxiety, with the scans coming up and just being able to be there or feel supported, knowing that someone also knew, and was like there with you in that way, like when Sarah had her surgery earlier this year, there were, you know, people, you among them, who I was able to, you know, express what’s what’s going on, what the what I was feeling, and people, they were checking in while we were in the hospital, and just being able to feel that support that way when we were, you know, two hours from home. The people that would have, you know, maybe been there to visit or,”Hey, I can sit with Sarah for a while so that you can go take a break, or go home and take a shower or something.” Like that. Wasn’t because of the distance. That wasn’t practical, sure, that kind of thing. And so just to say, I guess, to say to supporters, support doesn’t always look like you were saying, raking the leaves and things like that. People who can check in, people who can let you know that you’re thinking about them, letting the caregiver know that they are seen in what they are going through, can really make a big difference.
Allison: 100% Absolutely.
Allison: And I think supporters think about what is your skill set? If you’re like, “I’m not good with words, I don’t know what to say in the text, I’m gonna mess it up.”, Like, then maybe the leaves are your jam, right? Maybe you’re the person who’s like, “I’m not good at talking or emotions, but I will go and rake those leaves and not talk to anybody.” That’s your love language, right? Maybe you cook, maybe that’s your thing. Maybe you love the animals. You walk the dog, right? And so, and it’s sort of like my friend with the dog toys, like she’s a dog person. She gets dogs. She was like, these are tried and true and tested by my own dog. And you know? So she leaned into what she knows and supported me in that way. And so if you’re hearing the things like show up on text, like, and you’re like, “oh, no, I’m not good at the words.” You don’t have to be good at the words. But don’t let that be your barrier to say, I’m not good at the words, therefore I will do zero, yeah, because on our end, then it can feel like, “are they out there? Are they doing anything?” And so it’s a gift basket. It’s a, you know, I don’t know, like it. Can think about the thing that does feel comfortable to you, or the skill set you have, and then lean into that one instead, and not, not let the way you think it should look stop you from doing anything. And also, I think, you know, not getting too caught up in like, I don’t have the right words, so I’m gonna say no words, yeah, right. It can just be thinking of you, thinking of you. That’s it. That’s, that’s huge. That’s huge. So, I think, don’t, don’t feel like paralyzed by doing it, right? But instead, just do something.
Justin: I think another thing you mentioned like something as being like a barrier to offering help. I think to bring it back to kind of where we started this conversation, thinking that, you know, it should be the family that’s providing the support. If you’re a neighbor, acquaintance, friend, whatever. Don’t let the fact that you think, Oh, the family is, or should be, the ones to step up and take care of this, offer to mow the lawn, or whatever it is. Like, don’t think that, because it seems like you’re in a ring that’s way out there that you can’t reach all the way in
Allison: Or that it’s inappropriate, or that it’s weird, or whatever,
Justin: Exactly like you said, What’s your skill set and what can you do to make the offer to help.
Allison: And a specific offer, right? Not the like, let me know, because we don’t know your skill set. So would I love it if somebody came and said, I’m super handy. Do you have anything that’s broken? “Oh, girl, you just come here. I got a list.” So, you know, like, or whatever somebody says, I really love baking. Is there something I could bake for you, right? Like, because then it also, like, if they phrase it in that way, to me, it then feels less of a burden on them. Like, if someone said, “I really love baking, and would love to make something for your family. Do you have dietary restrictions, or, what are you hanging for?” Or, “I really love gardening. And so is there something that I could do that could help you in your garden?” You know what I mean? Like, then I’m like, “Oh, they actually really like this, and they’re probably going to be good at it,” and, so leaning into your skill set, I think, is a win, win for both sides.
Justin: I think too there’s, there’s something to like. If the thing you love to do, as they’re talking about a supporter here, is make food for people, or the thing you love to do is fix things that are broken. To be able to take that thing that you love to do so much, and that’s the thing that you’re doing to help, I think is a really satisfying thing. It can be satisfying to, like, Okay, I’m gonna go rake the leaves. But, like, I don’t, I’m not passionate about raking, raking leaves. And that’s not to say, like, don’t go rake the leaves. But I just think if you can think through your skill set and be creative, like, how that can be an even more meaningful connection between you and the caregiver. And people there. Be creative in what you’re thinking, and kind of, how can you match what you have the skills for and to provide help. You know, maybe it’s like can I change the oil in your cars?
Allison: I kind of want someone to come to my house right now. I was thinking about this in the middle of the night.
Justin: It’s the wrong time to be thinking!
Allison: I know, I know, is like, someone to come in and, like, change all the light bulbs, like, change all the burned out light bulbs, And all the things in my house that say, like, filter needs to be changed. I was like, you know, somebody just come do that, you know, stuff like that, that, if someone was like, I’m a handyman, or I’m whatever, you’re handy person, can I come and I’d be like, Yes Because yes, can I change the light bulbs? Technically, I can. Do I have the bandwidth for that? I do not. Does standing on a ladder right now to change a bunch of light bulbs feel like a good idea to me?
Allison: So I want to sort of summarize, because I feel like we were, I like we were like, we’ve come a long way. I’ll say that in our conversation. So how about to say to think less about like, I think that there’s a lot that we can learn from the ring theory, and to not let the ring theory get us to bound into the idea of who should be showing up and who isn’t showing up. But instead to like, break down those rings, just see it as a sea of people. You can take time to grieve and to think about like, I do wish that this person was showing up for me in a different way, but to not let that stop you from seeing the people who are showing up for you and seeing if, if you don’t have those people yet, seeing who could show up for you reaching in and then, and also paying attention to what are the spaces and places and people that help you feel seen, whole, loved, supported, and to try to spend more time doing that and less time in some of those other spaces.
Allison: And that for supporters to like, remember to like. It doesn’t matter how far out you are from these people to support and to think about what your skill set is. that a good summary?
Justin: That’s a great summary.
Allison: Thank you. Okay, well, here’s to, I mean, the tricky thing is, I feel like you know what’s going to happen. Caregivers are going to hear this and be like, I’m really good at baking. I’m going to go help another person. And caregivers sure if that, if that fills your bucket and you have the bandwidth, and you have the bandwidth, okay. And this might not be the season to do that. And that’s okay, and that’s okay. There might be other seasons in which maybe you can make those offense for your neighbor. Doesn’t have to be now.
Justin: Doesn’t have to be right now.
Allison: Quick little plug, yeah, if I may absolutely for all of our Minnesota area listeners, Saturday, November 2, is coming up, and we have Caregiver Con, which is going to be, I’m so excited, a beautiful, beautiful conference that we have designed just for caregivers. So it’s in Minneapolis, full day. But we know caregivers, you can just come and go, because your life is the way it is. I will be there, and I would love to meet any of you. So it’s caregiver con.com Okay, is where you can get the information. And, yeah, Saturday, November 2 in Minneapolis.
Justin: And one other thing to mention is we do have our 100th episode coming up, which, when we started, I don’t think I could have imagined, nope, that many episodes. And I look back at the list of all we’ve talked about, and it’s like, wow, we’ve we’ve covered some ground.
Allison: I think we need to acknowledge too, like and you and I still like each other, I mean, arguably more than we did at episode one.
Justin: I feel like we hardly knew each other at episode one.
Allison: We didn’t, what were we doing? But I’m so glad we did. So anyway, I think that’s a testament, right? You have to like each other, yeah?
Justin: So as part of our 100th episode, we’d love to be able to bring in some clips of you, the listeners, with what the show has meant to you. Maybe you have a favorite moment from an episode, or just a favorite episode, or you just want to say thank you for doing this. It’s been, you know, really helpful, or whatever, whatever you want to say, we’d love to hear it, and even if it doesn’t make it onto the episode, we just love to get feedback from listeners. It just means so much to hear that this is actually reaching people and that it’s being helpful. And those are some of my favorite emails to get. Oh, absolutely to all that being said, we have a hotline set up for you to call and leave a message so that we can put it on this 100th episode and kind of edit those together, and we’ll kind of have a nice reminiscing of what of the past 99 episodes prior. So if you want to call in, the number is 360-389-2334. For whatever, maybe you’re international and it doesn’t make sense to be calling a US number for whatever reason, you can certainly, you know, record a voice memo and email that to us at Insicknesspodcast@gmail.com or just send us, if you just want to send us a message, an email with just text, that would be fine too. And we can share that as well. So look forward to hearing from you, yeah. Look forward to celebrating with you all in a couple episodes.
Allison: Yeah. Amazing. Amazing. Okay. Well, thanks for the good talk, my friend. Thank you for being an incredible friend.
Justin: Yeah, you as well.
Allison: All right. See you later. Bye.
Justin: Bye.