Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning, Allison
Allison: Hey, Justin. I’m wondering if you’ve done anything like cool or interesting lately, seen anyone cool?
Justin: I guess you could say that, this time last week, I was in Minnesota to visit you and Sean. It was incredible spending time with you guys. I loved it. We went to a cabin up on the north shore of Lake Superior, and saw the fall leaves, and it was gorgeous. And just the views of the lake, I really understand why that’s like your one of your favorite places to be. It’s just, so calm and just, yeah, it was a really, it was good to connect with you guys. It was good to be in the same, like, physical location. It’s great to talk every couple weeks here. But there’s something different about like sitting across the table and, like, right there. So that was, it was really special. And I just appreciate you hosting me and it was really great. It’s been really fun. Going back looking through the photos of everything, and just kind of reliving it a little bit. So, yeah.
Allison: So listeners, you know, Justin and I met, like, on Instagram. Like, you know, years ago, four or five years ago, just through caregiving stuff, and then started the podcast without ever physically meeting each other. And then was it two summers ago, three summers ago,
Justin: I was two I think.
Allison: Sean and my mom and our daughter and I spent a week or so out in Washington, and then got to meet Justin and Sarah and Sarah’s mom. So that was the first time we had physically met, and we got spent like, a day and a half-ish together. That was it. So then this was, you planned this a long time ago. That was kind of a risk.
Justin: I knew it was like, things can change. I know I understand how things are, but figured, let’s at least write something on the calendar and pencil and see what happens.
Allison: And I think you had been like, Okay, if I because you had never been to Minnesota, and you’re like, when’s the best time? And we’re, I was, we figured it out. We’re like, October. The beginning of October is the best time. And it was so funny, because, like, you know, you’d been planning, and you were asking these questions. And I was just like, it was so far in advance. I remember at one for at one point, I didn’t want to think about it, because I knew that fall meant that Maya would be at college. I don’t want to think about fall because that means she’ll be gone, yeah, right. And so then when it finally came, I was like, oh, it’s really here. It’s actually happening. But my gosh, like, what a gift to be Thursday to Sunday. So we had, like, four good days together. So yeah, thank you for making the trek all the way out here. And, yeah, it was really, really great. And it’s so fun because now I have been in the room I can see you sitting in. You’ve been in the room you can see me sitting in. And it’s just all this context that we now have. So imagine how much better this podcast will be.So that’s so great. So great. Yes, thank you for for making the trek.
Justin: Other than having a wonderful visitor and going up north and all of that, how, how are things going over there? What’s coming up? What do you got?
Allison: So this last week, a couple days ago, Sean had a big day that it was one of these where it was like, this could go in multiple directions. And it was like, I think it was probably his one year follow up for his esophageal cancer surgery. So there weren’t any like concerns going into it, necessarily, but it was like, We gotta check, you know. It’s one of these scary things where you don’t know, it’s like, you’ve no, no idea what they’re gonna see. And it’s scary that a professional is gonna tell you what’s going on in your person’s body. So they were gonna, like, do a scope, they were gonna go down, they were gonna stain it, look at it with a special light, look for anything concerning, take biopsies, stretch it out if needed, and then also remove his G tube, which I won’t go into all that. But last year, when they took it out, it didn’t close, and it turned out the whole thing. So it was sort of like, this could be a no big deal thing. This could be a huge deal thing. We don’t know. So skip to the end. It was all great. All the news was amazing. Um, if you know For more details, you can check out my post for listeners. But like, I actually didn’t even believe the nurse when she came in. Like, I literally didn’t believe I thought she was probably talking about the wrong person, or she’s not understanding the case, because she’s like, “they didn’t take any biopsies.” And I was like, “What do you mean they didn’t take any biopsies? They always take biopsies.” She’s like, “Well, they didn’t see anything.” And I was like, “Actually, like, are you talking about Sean Breininger?” Because I just am not used to that. So anyway, that all went beautifully, which was great.
Allison: This Tuesday, a couple days from the day that this episode will release, uh is Mohs day. So the last time he went, they found so many spots, and that he, he and the team have sort of decided together that four is like the limit. Most people usually get one, right, and it’s something they talk about for years. He gets four at a time every few months. So last time they I think they found 12 stops last time. So they took four, and then they said that couple that they knew they needed to take and that they would schedule the next time. And then they biopsied a bunch, and then wait up the results. So they already know that four more need to happen and know which ones they are. And then there’s more. So they actually, at one point had said, Okay, put the next one on the book. So we haven’t done that yet, right? It’s just this endless terrible cycle that’s coming up.
Justin: So can you explain, just for listeners who might not be familiar with what I mean, you don’t have to go into the graphic detail, but what are those procedures?
Allison: Absolutely. So essentially, it’s when they find a skin cancer spot, they go and they first surgically, like they numb it, and then they remove that spot, or including the spot around it to make sure they get it. And then they just sort of slap a quick bandage on it, take it to the lab right away, check and see if they got clean margins. If they didn’t, they come back, they take further. And so they keep doing that until they are sure that they got clean margins. And then when they’re done, they go through the process of closing it, which, depending on the size of the site, can be pretty intense, and the person is awake through all of this, okay? So it’s a lot of needles, it’s a lot of slicing and dicing and cauterizing and the things. So the thing I want to talk about today is the impact, because he has had, I I always say 150 but I keep, I keep not upping the number. I mean, probably maybe we’re at 200 by now. I don’t know how many he’s had. So many of these. This was the very first symptom he had. Was skin cancer. So for 13 years, maybe 14, because it was before the diagnosis even happened. We’ve been going through this regularly, every few months. I have always sat in the room for these because I’m like, I am the caregiver. I’m here. I’m here to make sure that his needs are met, that he’s comforted by me that he’s comfortable,that I’m advocating all the things. And so I’ve always sat in the room and we have this one surgeon, and there’s another one in the practice, and I’ve always heard that that other one does not let caregivers in. And I’ve always thought I would fight that man. If that man was like, “You’re not coming in,” I’d be like, “Oh, really? You think I’m not coming in, I’m coming in.” And so I’ve always been in the room, right? And as you can probably imagine, after 14 years, it’s taken a toll on me. These Mohs days really have started to kind of like mess with my head.
Justin: And these are long days too, right?
Allison: The last time we were there seven hours. Yeah, and I’ll like, I’ll spare you the details, but imagine any all of my senses are taking in ways in which my favorite person on the planet is being hurt. But it’s also this catch 22 of like, I’m actually asking these people to hurt him, and I’m actually paying them to hurt him, and so I can’t stop them, but I kind of want to punch him in the face. But I can’t, you have to be nice about it. Do you know what I mean? So it’s really started to mess with my mental health as well. Yeah. And so I’ve been working with my therapist on, like, “What? How? How? What? What can we do about this?” So, the overall topic I want us to go into today is, how do we balance the caregiver needs and the patient’s needs? Because he can’t opt out. And I see my job as his caregiver, as doing anything I can possibly do in my power to ease hard things for him. So knowing that me being in the room eases it for him, because I’m advocating, I’m holding his hand and I’m whatever, and opting out of that. That feels like I’m failing at my job. It feels like he doesn’t get to opt out. Why do I get to opt out? I should, if he’s suffering, I should suffer, and his suffering is more important than my suffering and all of that.
Allison: I’ve got some plans in place for what I’m going to do on Tuesday, and we can get into that. But I’m wondering, like, it’s interesting when I said, I feel like if I’m doing that, I’m feeling my job, and immediately you said, Yep, right, yeah. So let’s talk about that. Like, when you hear that, and you hear like you weren’t like, Oh no, you’re like, yep, which I’m not taking into attack on me.
Justin: It’s how we feel as caregivers
Allison: Exactly. And I think this links perfectly to our last episode about what is the perfect caregiver. The perfect caregiver school. She pushes down all their feelings, does whatever it takes. The person puts their person’s needs, emotions, priorities, top, top, top, top, and theirs are, like, maybe not even on the list. And we know that that’s not okay and it’s not sustainable. If this was like you broke your leg, I’m gonna be with you during this broken leg thing. That’s different. But for so many of us, this is a long term thing. If we continue to just say their feelings are up here, and mine aren’t even on the list, it’s not going to work – as my nervous system will tell you. So I’m going to pause, because I just talked a lot. You tell me, what are you thinking?
Justin: I think when what really resonated, as far as this whole thing that we’re talking about, is like they can’t opt out like they have to experience whatever it is, whether it’s a horrible day of chronic pain at home, whether it’s a terrible procedure like you’ve had experienced so many times. Because they can’t, it somehow feels like a betrayal if we choose not to engage in that, or not to also witness that, or be there to support them through that. And, yeah, that’s a difficult thing to kind of, I don’t know, think through and figure out how to approach it from a sustainable way. Because, like, like you’ve said for yourself 13-14 years of this, it understandably, takes a significant toll. It also takes a toll on Sean, certainly, but for you to be there, absorbing everything that’s going on in the room, feeling like you probably have to be super vigilant the whole time to just make sure that they’re attentive to what he needs. So you’re not in a state where you can be with your emotions, necessarily. Maybe, is that accurate?
Allison: Yeah, or even the zone out like he can, sort of like he puts ear buds sometimes an eye mask, like he zones out, yeah? But I don’t feel like I can zone out because I’m feeling like I need to be alert and watching. And being alert and watching means seeing and smelling and hearing all the things.
Justin: Yeah that’s, that’s a lot, yeah.
Allison: So two words that hold, I just want to pull out two words said that really struck me. One is betrayal. On that, yeah, I think we should talk about that, because it feels like, yeah, that’s what it feels like. The other one is absorb. Because I think that’s exactly like when I think about what I’m absorbing on those days, it’s like, of course, it’s taking its toll, right? And so I often leave, like, the last time he had one of these that knocked both of us out for a couple of days, he recovered. And at first it felt like, “Oh, of course, like I felt garbage. G he’s covered in bandages. This makes sense.” A couple days later, his bandages were gone, you know, like he was doing so much better, and I wasn’t right, and I was like, “What is wrong with me? Yeah, I’m not bloody, I’m not bleeding, I’m not this.” But then, but you think about that word you just used, absorbed, So you can’t look at me and see that, yeah, I absorbed all of that as well
Justin: For seven hours.
Allison: For seven hours. And I just don’t, but I don’t have the bandages and scars like anybody can look. Could look at him afterwards and be like, holy crap. That guy just went through something. But you wouldn’t look at me and see that. But I did. And I also the thing I want to say quick is, yes, it took me 14 years to, like, put my foot down about this. That’s not a good model. I’m not modeling well for us caregivers. I’m not saying that we need to wait 14 years, or to wait until your nervous system is, like, “no.” And in fact, my therapist has said, “I have been mad for years that those doctors have let you go into that room.” She’s like, “I think it’s irresponsible that they let you watch that.” And I was like, “Well, until recently, I would have fought them.” Because I think I was so engaged in this, like, “This is my duty. Of course, I’m going to be in there. Of course I will. You’re going to let me in there.” And now to step back and be like, “oh.” I’m not gonna get into like, they shouldn’t have let me in. It’s more like I felt before, like this is where I need to be. And there was like, no other option. And I’m just now starting to be like, maybe there’s another option, but it’s taken me this long.
Justin: It’s clearly like, as caregivers, we’re trying to, I mean, what we’re doing is trying to meet the needs of the person we’re caring for. We’ve talked about all kinds of times, how we focus in on that and we forget about ourselves. Sometimes the caring that we’re doing maybe we want to take care of ourselves more, and we like there’s just a disconnect, and we’re not able to as much because we’re doing so much caregiving. Now that’s a different discussion probably here. To be able to find that balance between “Yes, their needs need to be met, but also my needs need to be met.”I don’t know, I don’t know exactly if this fits in, but what I was thinking about leading up to recording this is there’s that. What is it Maslow’s hierarchy of needs? Certainly, we want to make sure the basic needs of our caregiver or the person we’re caring for are met. I wonder if it’s like if there’s something to okay their basic needs are met. Are my basic needs being met before we go up a level to meet their -I don’t know the whole hierarchy – but Before we get to meeting all of their needs, all the way up, going back to ourselves. If we’re not, if we’re not being met at the most basic level, something needs to shift.
Allison: Yes, I love that you’re bringing this up. Okay, the the, I think the interesting thing is that, like, to the bottom of Maslow’s is physiological, so it’s breathing, food, water, shelter, clothing, sleep. The next one is safety and security. Okay, right. So I could, at first, I was like, “Oh, good.” But it’s like, ah, but I but if I’m gonna get my head about this, I could say, “He feels more safe and secure when I’m in that room. I can advocate better if I’m in the room.” Sometimes we’re just so like in it, especially, I think when we’re maybe new caregivers, or when we’re like in an emergent situation, we’re not even like our needs. We don’t even have the brain space to think about our needs. There’s that track,of I see my needs, but I don’t know how to meet them. But I think the track that so many of us are on is I see my needs and I still rank them lower.
Justin: Yes.
Allison: That’s what I’ve been hearing. I feel like our support group about the perfect caregiver was so powerful. And that’s what just kept coming up. Yesterday, we did an event, and I feel like that’s what I just keep hearing over and over from people, is like, “Well, but I’m not the one who’s sick. I’m not the person. I’m there for them. Well, their needs are more important. Well, mine, you know, it’s like, if we even recognize even, even the times that we do recognize that we have needs, they are never at the top of the list, We’re not the ones who are sick.” And my therapist and I were talking about this the other day, and she was like, “what if it didn’t have to be a ranking? What if it could be an even playing field, and everybody’s needs matter.” There isn’t a ladder of whose needs are most important. But it’s an even playing field.
Allison: Now, that felt lovely to me, but again, like, what does that look like in practice? Because again, like on Tuesday, we have to make this decision. And as caregivers we’re constantly like triaging, like when Maya was little, I that was the hardest part. Whose needs do I meet? His or hers? His or hers? And now it’s now that she’s sort of like less in the daily picture, it’s his or mine? It’s like, oh, look, mine are on the table. That’s exciting. But still it feels like this, this pull. And so I think that part of it is that we need to realize that our needs, we are not the one with the diagnosis, and yet we are worthy of wellness, yes, that we are absorbing all of this. I think about things like the statistic that people have had neck cancer, their caregivers have the same rates of PTSD as the patient.
Justin: Wow.
Allison: And that in some types of cancer, the anxiety levels of the caregiver is higher than the patient. Wow. Which makes sense if you think about it, right? Because we’re like, taking it all on, right? And so when we think of it that way, it’s like, how can we say, “Whoa, yes, our needs matter too.” Which every time I do a support group or webinar, we start with some sort of grounding in we often have some kind of phrase that we think about. And often one of those phrases is like, my needs are valid or mine. And when I say to people afterwards, “What did that bring up for you?” Often they’re like, “Huh?” You know what I mean, like, that’s what the kind of their response to that is like. Or they’re like, “My brain knows that.” Like, on some level I know that. Like, sure, yes, of course, my needs matter, right? But when it comes down to it, “No, absolutely, they’re my person’s always going to be first.”
Justin: It’s my needs matter, but, yeah, they’re not the most important. Or my person’s needs are more important. There’s that qualifier on it.
Allison: There’s always a qualifier. There’s always a ranking. So what I had started to think about is like, I can’t. Like, I’d gotten into a headspace where I was like, I can’t, I can’t. I can’t do these most days anymore. I cannot. And then that sort of got me into this. Like, what does that mean? So a phrase that I’ve shifted it to is I can’t keep doing it the way I have been. So it doesn’t have to be like, I can or I can’t. If it’s I can’t do it the way I have been, what could it look like instead? So, like, I’ve been thinking about for Tuesday, and hopefully this can people can take this model and apply it to things/ Is sort of a continuum. So I have been going into that room, sitting in that room all day, watching everything, smelling everything, all the things. So that’s one end. So if I scooch back one step, it could be, do I go into the room only in the waiting times, while they’re sending stuff to the lab, and sit in there with him. But I’m not in there while they’re doing stuff. Another step do I bring him and wait in the lobby? And stay in the lobby so I’m in the building. But you know, the next step to the whatever is I drop them off at the door, pick them up at the end. The other step further is like, somebody else drives them. He takes you Uber. Walk yourself to the appointment. So I’ve sort of been thinking about that continuum and like, where do I feel like? And so I played out I know I don’t want to be in the room for the slicing, dicnig. And then I played out, what would it be like if I was just if I was just in the room in the in between times? And I decided even that felt viscerally like I don’t want to be in that room. That came through loud and clear for me, I don’t want to be in that room. So I was like, “okay, all right, good to know.”
Allison: So then I went to the next one, what would it feel like to be in the lobby? And then I thought, okay, that feels less triggering. But also, if I’m in the lobby, does that actually help anybody, right? What are you doing there, right? What does it benefit anything to sit in a lobby for seven hours, right?
Justin: I mean, that’s draining for you, without providing any support for Sean.
Allison: So he and I talked about this yesterday. I said to him clearly, like, I have decided I’ve come to the place where I can’t be in that room anymore. I’m either in the lobby or I’m bringing you and dropping you off. And he too, was like, “It doesn’t make sense for you to stay in the lobby. You can drop me off.” So that’s what I’m gonna do on Tuesday. And this feels like an enormous step. It feels like, even as I say that, I’m like, oh, people are out there judging me. They’re listening and they’re judging. They’re like, “Oh, caregiver F. Oh, I thought she was good.” That’s what I feel like listeners are doing right now. And so I feel a little like, obviously, I’m still got my feelings about that, you know, I think that.
Allison: But if we go back to- if we say his feelings are most important, he feels like, he has been amazing about this, because he’s the best. And so he was like, “You do what you got to do. I want you to. If it’s that hard for you to be in that room, I don’t want you to be in that room.” So, I mean, I’m blessed with, like, an amazingly understanding and compassionate partner, which may I realize that not everybody’s gonna have that. So anyway, I feel I’m talking a lot today. I’ll pause and let you hop in. Sorry.
Justin: Well, first of all, I think what you’re choosing to do for Tuesday is I think that’s really brave. I can understand that that’s a difficult choice to come to, but I am proud of you for advocating for yourself in that regards. Because I think, I think that that is a certainly, that is a more sustainable approach given the trauma that you’ve experienced over well over a decade in going to these, which is more than I can fathom relating to this. So, good on you for that.
Allison: Thank you. I’m gonna need you to keep saying that to me.
Justin: Yeah, for sure, absolutely.
Allison: I don’t know if I’ve ever cried on the podcast. I don’t know anyway. Point is, like, clearly, this is this hard.
Justin: yeah, it is.
Allison: Even for you to be like, I’m proud of you, you know, like, I’m like, “Thank you. But what about the judgers? Or what about like, I don’t know.” So anyway, I’m gonna usually keep saying that this great decision and that I’m not failing as a caregiver, or I’m not being like, too needy, or I’m not being too this or that, or I don’t even know all the words, right?Because, yeah.
Justin: I think that what matters is, is you and Sean, and he’s supportive of you doing this. You’re taking care of yourself. And I think that who cares what other people think? And that’s easy to say, and I know that’s hard to actually put into practice, but I will keep saying that. I will keep reminding you that. I’ll be there on Tuesday to let you know, yeah, and you’ll get through it. It’ll be different.
Allison: It will be different.
Justin: It’ll be different.
Allison: Even the fact that you get to drive home feels, you know, like I’m cheating. You know, like I’m cheating, that he he has to be in that terrible place, and I’m gonna drive home, sit at home for the day. You know, it just feels like, Why do I feel like I get to cheat, like I get to not go through this hurt thing, yeah? But I know I need to.
Justin: You need to.
Allison: So I’m also glad I’m saying this, like, on air, because then I can’t back out. I can’t on Tuesday morning be like, “just kidding. I’ll go in, right? I’m fine. Everything’s fine. I’ll just go in.”
Justin: As caregivers, our needs matter, and we need to take care of ourselves. We need to make sure that we are our needs are being met, that we’re in as good of place as we can be, because we are human. Because I think it’s easy to fall into the I need to take care of my needs so I’m better in a better situation for caregiving. And that’s true, but I think we need to go deeper than that. We’re human, we deserve to not be worn out and just spent and exhausted and traumatized. It goes back to the fact that, like our person, can’t opt out, it feels like you aren’t either. I’m not saying that I’m right as a judgment, but, yeah, you gotta do what you need to do. Like you said, he has things that he can do to zone out to some extent. So it’s, it’s a team that has worked on him, presumably, a lot is familiar with the whole situation. They can handle it.
Allison: I think that’s part of it too. Is like I provide comfort. So we talked about, are there things like, he’s got, what if I send him a song? What if I send him a voicemail? And he was like, I’m he’s like, “No, I just need to zone out. Like, it’s fine.” Or do I send him a little, you know? I don’t know. Is there something he can hold on to, whatever? He’s like, that’s cute, but I’m fine, you know. Like, you know. So there’s the comfort piece, but there’s also the advocacy piece. So there’s that piece too, of like, you know, like people who follow along with my stuff. And you might know that, like, last time there was this fellow who was like, the worst, and I think would have been worse if I had not been in the room.
Justin: If you had not been there.
Allison: So then there’s that, like, what if they, you know, what if they don’t notice, what if they this, what if they’re like, terrible, you know. And that’s an extra layer – the what ifs, you know. What if he comes out of that day and is, like, “yeah, they were, he was the same guy, or he was terrible.” And then I, you know, is the guilt gonna, you know? So, I mean, one thing I think I’m gonna do, and obviously we have a good relationship with this surgeon, but is I’m gonna send them a mychart message this weekend. And just say, here’s what we’ve decided. I’m not gonna come in the room anymore. And then I’m gonna try to say to him in some way, “Step up your A game, man.” I typically, like, watch for these. You know what I mean. And so and remind him, because he had said last time after we complained about that fellow, he said, “I think that from now on, I will only work on Sean like I will not have any of my residents or my fellows.” So remind him of that, so I can sort of advocate on the front end. I think the other thing is that Sean, especially as a person who’s gone through all the things, but also as an Enneagram nine doesn’t advocate for himself, and hasn’t had to, right? So I’m always the one that’s like, looks like he’s shivering. Can somebody give him a warm blanket? And so it’s sort of like passing off this torch. Of like, if you’re cold, you could ask for a warm blanket, right? You know what I mean? Which even that feels a little bit like, Oh, I’m gonna ask him to do a thing, you know, but like, it’s probably a good thing to take on.
Justin: So something, something that just, I’m thinking about here is, we, you know, frequently talk about, we give examples from our experiences, and we both have great relationships with our partners. I think we can have these conversations about, I can’t handle this. We need to change how we’re doing it. Find a different spot on that continuum and feel like we can have a good conversation and feel heard and seen and all of that talking to a person. There are numerous caregivers who are in vastly different situations with the person they’re caring for and that could be just to due to personality difference or relationship strain that was there prior to caregiving. It could be because of cognitive changes. They’re in a different place. And so we’ve been talking about you and this thing that this change that you’re making, and how difficult and hard that is to arrive at that, and that’s with a supportive partner. And so I just want to acknowledge how much harder it must be to navigate this, the needs of the person I’m caring for the needs of myself. I don’t know that I have an answer for how to do that.
Allison: No, I’m glad that you’re saying that, because you’re right. I mean, even with, like, the best relationship ever that Sean and I have, I was nervous to say, like, I need to talk to you about this. And it was great, it was a great conversation, but I still felt nervous. And so one thing I wonder about is using the system right so I didn’t have to play this card, but I could have said, “My therapist has said that I really – she really does not feel like I need should be in that. Like she’s not gonna let me be in that room, right?” You know, like I could hear a person saying, “(grumbling sounds).” You know, but like, so if it feels like it’s easier to come from someone else than from you. Or even I could – I wouldn’t do this with Sean. But if it’s a situation where you could go and say I know that this other surgeon doesn’t let caregivers in there. To say they have a new policy and they’re not letting caregivers in anymore, do you know what I mean? So is there a systemic or a different quote “expert” person who can say and stand up and say, I’m happy to be that person for anybody. Like the people that I coach, I always say, “Just blame me. Your people don’t know me. Just blame me and be like, ‘Allison says that I cannot do this anymore,’ “. Like, I don’t care if your person’s mad at me. So I think that is sometimes more helpful, like, than us sticking up for our own needs and our own self is, is having right outsider, say, a neutral third party? Especially if they have some sort of title, right that that might help. It’s not just like, “Oh, my girlfriend says that…” It’s “Oh no, my doctor or my therapist or your doctor.” I think even if I had honestly said to this surgeon, “It’s really impacting my mental health in the room.” He would have been like, “You shouldn’t be in the room.” . So is there that kind of thing that you so even if it’s like, if your person’s like, “Absolutely, I need a person in the room with me.” Can you shuffle the deck a little bit so that, like, sometimes it’s someone else who’s in the room. Sometimes, so you know, even if you’re in the room, or whatever the case may be, that it’s less frequently than every single time. And your person might be like, “I like you the most.” “Thank you.” And you know, like, it’s not gonna it’s just not sustainable for me to keep going. I hope that people can hear that again, that it doesn’t need to take 14 years right to get to this point. But how can you learn from what I’ve gone through to preemptively, like, realize, like, “Whoa, this is a lot and like, preemptively set some of those potential boundaries up right yourself.
Justin: Because it’s one of those things where, after 14 years of something that is a well worn path of how this is handled, of what we do. And it’s hard to make that change after that long. Whereas, if you’re a new caregiver and you’ve done a procedure once or twice or this encountering the situation for the first time, if you can advocate for yourself right away and form a new path for both you and who you’re caring for. That for both of you, you understand that this is how this goes. If it’s someone who does, I don’t know that, they don’t get used to you always being there until so that, until you’re, you know, can’t do it anymore, right? So I think that’s something, if you’re a newer caregiver to kind of hear and to think about. Because I think there’s so many opportunities early on to set yourself up to have a more sustainable model of caregiving that you’re doing if you know these things. I was kind of thrown into it, and I didn’t right have I couldn’t, I don’t know, I couldn’t find, or didn’t have the energy to find resources. And so you survive. And so if you, if you are in a situation where you’ve done something a certain way for so long, this is not to say that you’ve been doing the wrong thing. You’ve been surviving, you’ve been getting through. And that, in and of itself, is amazing.
Allison: Yes, and I think it’s a moment to say, just because you’ve done it this way for this long doesn’t mean that’s the way you have to keep doing it exactly. Because, did we know 14 years ago that we were going to be doing terrible thing this often? Yeah, we have no idea, right? And so I think there’s that piece of like, just like for me to know. We even had an appointment with the doctor where in between these where I said, because I felt we were on this hamster wheel of just like we would go, we would get the appointment that they would say, “see in three more months.” And I was like, “Yeah, is there a better way.” So we had an appointment with the doctor as well about, I said, I think we just need to pause and say is there a different way? And then he said, “Oh, did you know that things like, we can offer valium to him?” Like, nobody’s ever said that before, right? And he even said things like, “You could do fewer at a time. You could go to this different clinic if this clinic is triggering.” And I was like, “Really, it really took you me sitting you down.” So we also talked about, what are other ways to provide that they can provide more comfort? That doesn’t always have to come for me.
Allison: But I keep thinking my again, my therapist and I’ve been talking about this a lot, which is why I keep quoting her, but that she said something about taking up space in our marriage. She’s like, “I think it’s time for you to take up a little more space.: And I was like, “Interesting.” Because I think that most of us caregivers would be like, I” don’t get to take up any space. There’s no space for me. They’re all 100% of the pie.” But she was like, what would it feel like for you to take up some more space? And so because I’ve been telling Sean about how this has been feeling for me. Last week before the esophagus thing, he was like, “How are you feeling about Thursday?” And it kind of like knocked me off my feet for a minute, because I was like, “That’s my lot.” But it was so, it felt so kind that he was realizing that these days, because I’ve been talking about it, he’s realizing these days are hard on me. And stopped and asked a few days, you know what I mean? And it was like, “Oh, wow, there.” And that didn’t take anything away from him. And then I think in some ways, like the “patients” sometimes feel like, great when they’re able to they can do some caregiving. You know what? I mean, they can do something. So I think he actually felt good that he was able to support me in that way. But it’s just been an interesting picture for me to think about, like, my needs get to take up some space as well. I want to be clear that it’s never been him saying your needs don’t matter. I think that’s a thing to pay attention to. It’s been me right, saying his needs matter. And so how can that what does that picture look like, of our needs taking up some of the space as well?
Justin: I think that’s a great kind of way to phrase that our needs taking up some space and us taking up some more space. What I think is you mentioned there is like you. You sat down and you had a conversation. We have to have a conversation like you if you want things to shift, if you feel like you need a different way to go through these things. If you’re not telling the person you’re carrying, telling the people on the that are in your team that things need to change, or that you are spent, that you feel like your needs are just at the very bottom, things aren’t going to change. And it doesn’t do you any good to just keep all that inside and keep ruminating on it. Certainly having a a therapist to talk to and go through all of that is one thing, but that’s just retroactively helping you with it to some extent. Until you like, have a conversation like, you’re not taking steps necessarily to shift. And it’s like you said, just because this is the way we’ve done it for 14 years, that doesn’t mean that’s the way we have to continue to do it. We can change how we do things and to shift.
Justin: If we can shift towards supporters a little bit. I don’t know if you have anything else you wanted to say.
Allison: No, that would be, yeah, let’s do it
Justin: Certainly we talk a lot about how supporters can just ask how the caregiver is doing. Can acknowledge that the caregiver is going through something hard and all of that. And that’s great. That’s good. I think this is a place where doing like, taking some action and seeing that there are needs that likely, if you are supporting a caregiver, they have needs that are not being met for all of the reasons that caregiving is hard and all of that, and doing something to allow more of those needs to be met. That there are hard days at the clinic, or, you know, procedures or treatments that they have to continually go to. Can you, as a supporter, be the person in the room, if you have that relationship with with the person? Can that load be shared or handed off. Or what else can you do to allow more of the needs of the caregiver to be realized and to really think about what actions you can take, as opposed to just saying the words and the words are incredible. The words are very supportive. This is, I think, an area where it can make a big difference to translate that into some concrete action.
Allison: In my notes for today’s conversation, I wrote “supporters,” and then I put “support this.” So you just said, you know, words are fine, but I am thinking for me on Tuesday, words are going to be everything. You know what I mean? Like, yeah, supporting a caregivers decision to take up more space.
Justin: Yeah, you’re right.
Allison: So I feel like, if on Tuesday, this episode comes out, or I put on social media, like, “I’ve decided to not to drop him off,” I know I’m gonna be hyper aware of those comments. And if anybody’s like, well, right? Like, even if 1000 people say, like, good for you, right, that one person who’s like, you know, I don’t even know what that comment what, right? I don’t even want to play the game of like, what the comment might be.
Justin: You can delete that comment.
Allison: But do you know what I mean? So I think if it’s yes, it’s the logistical piece of like, like, “hey, like, Would it be helpful? I imagine this is the toll that these days take. Is is intense. And so I’m wondering if, if your person would be comfortable, I’m would be happy to take them on this day.” So I think you’re right. It’s the action so that they can step away, but it’s also the supporting them in that action. So exactly what you did for me a few minutes ago, of like, “this is a big deal, and I’m proud of you, and I’m going to be there supporting you, you know, across the nation this on this day.” And so I think that that’s huge, because, for all of the little voices in our head that are like, you’re not doing a while, you’re not doing you’re you’re failing him, you’re right. Like, we need a billion, ten times more people to be saying, “Yeah, of course you’re gonna stay home. Yeah, of course you are. I am proud of you for making that decision. Way to let your feelings take up space. Way to let your needs matter.” So it’s both. It’s the actions, but it’s also the, like, verbal support in a way of and, like, not letting anybody feel guilty, of “but don’t you think he’s gonna feel bummed if you’re not there?” “Stay out of it, Susan,.” (laughter) Don’t know who Susan is. I just threw that.
Justin: I know. So what are you gonna do on that day?
Allison: Yeah, that’s the thing, right? So there’s like, there’s a meeting on the books that I have said to those people, like, “I don’t know if I’ll be there.” I mean, I do feel like working is probably, to me, I think to my brain, it feels like like I don’t feel like I should go do something lovely, right? Do you get that? You know, it feels like that feels like super cheating to go do something lovely. And so I think that I will come home and work because it feels sort of like that feels. Like, well, if I’m not going to be torturing myself in that way, and I’m not saying work is torture, but you know what I mean. It feels like that feels like the the other logical thing, well, I had a meeting, you know?
Justin: Because, like, sitting, sitting on the couch, thinking about how things are going all day isn’t right gonna help, correct?
Allison: And I feel like I’m gonna say to them, because I even went through, like, “Oh, but I do want to have a conversation with them about how things went.” But then I was like, I’m not going in that room though. So I was like, “Okay, I’m gonna have them call me at the end of the day and let me know, how did it go, and talk through all the things.” So I think I’m gonna be at home, work, but not maybe in a scheduled way. You know what I mean, except for that one meeting, so that, I can be available for on phone, for the doctor, or for Sean or for whoever. But then I have things I can be doing that are busy. And that don’t feel too lovely. But I do think it’ll be interesting to see. Because he’s going to come out of there all bloody and beaten like usual, which still impacts me. For sure, that and the days to follow will still impact me, but it’ll be interesting to see how I how different I feel after not also having just gone through the day itself. You know what I mean?
Justin: And I think if you go through that and I don’t know it feels weird, or you don’t see that you somehow you don’t feel magically different or better, changing it up this one time, that’s not reason to, “oh, this didn’t work. I’m gonna go back to how we…”
Allison: You’re gonna have to keep saying that to me too.
Justin: I imagine that you know your body has a built in reaction, regardless, probably, of where you are to these days, and that what follows. So things like that take a long time, or can take time to unprogram and set up a different way. So I think, too, don’t judge the impact of this decision on the single instant.
Alliso: Good reminder. I think about, you know how sometimes I say it’s like trying to brush your teeth while you’re eating Oreos. And so it’s sort of like, for this one day, I’m not just not going to add a new Oreo, you know what I mean?And so it’s not like, Oh, I’m gonna feel amazing, but it’s like, at least I’m not adding another Oreo to the pile of Oreos in my mouth. Makes sense?
Justin: It does.
Allison: I hope that this, I’m looking I always look forward to the support groups that follow this, but I hope it’d be interesting to see how this translates for other people. This is a very specific example, but I hope that listeners today can take this and translate this into some aspect of their life. And so some of the phrases from this that have been helpful to me, that I’ll just reiterate, is that, “I can’t keep doing it the way I have been.” Thinking about that continuum, and not saying, like, “it’s either all in or all out.” What are the potential steps along the way? And then the piece about I get to take up space as well. It’s not this ranking of whose things are more important.
Justin: There’s not a limited amount of overall space. Whereas in if you know, if I take up more space, the space that they can take up is diminished. I don’t know what that model, that’s the wrong model to think of it as. I think that is a completely, it’s like a teeter totter or something. I don’t know whatever it is, but I think that’s important.
Allison: So thank you for this conversation and for, I mean, you’re such an incredible model as a friend. So I already know that on like Monday night you’re gonna be texting me, and Tuesday morning you’re gonna be texting me, you know what I mean. And so I just appreciate knowing that I have you in my literal pocket with the words of support. So I hope everybody out there has a Justin of some sort, but know that you all have us.
Justin: And thank you for sharing, for being vulnerable. I assume this probably isn’t easy to talk about. And so I think it’s for people to hear other people having a hard time making these kinds of decisions. And wrestling with the same kind of stuff, I think is is good, yeah?
Allison: So, yeah, yeah. You’re welcome. Thank you for saying that. And I think it helps us knock down this myth of the perfect caregiver from last time too. So someone else is like, well, Allison goes in there every time. It’s like, “Nope, oh, she doesn’t. Not anymore.” Well, this is episode 97. And for you math folks out there, you realize that that means we are getting close to Episode 100 .
Justin: 100
Allison: What?! Which is amazing, because you. Originally said, “Hey, Allison, what you do six podcast episodes with me?” Way to way to hook me in, because here we are, 97. So listeners, as we think about celebrating episode number 100 we want you to be part of that. Yeah, we have set up a hotline, and for that hotline, and you can hear some instructions when you call. But we would love, in the next weeks for you to call the hotline and tell us what has this podcast meant to you? Favorite moments, favorite episodes, anything that you might want to share. And then Justin’s going to do his editing magic and turn some of those comments into something. And then we will share some of those on Episode 100 so what is the number that they call if they want to do that.
Justin: The number is 360-389-2334,
Allison: And you can also find that on our social media stuff and show notes. I don’t want to put you on the spot with this hard question, but what about our international folks?
Justin: Yeah, so international folks, if it’s not practical for you to call a US number and leave a message, you are more than welcome to record a voice memo on your phone and send it to our email address insicknesspodcast@gmail.com, and we can use that as well. If that’s an easier way to do it, great,
Allison: Or if, for some reason, that doesn’t work either, and you just want to email us so we can read it out loud,
Justin: Yeah, for sure, that’s fine too.
Allison: Yeah, awesome, but it’ll be very fun to hear from all of you.
Justin: Yeah, and I’m looking forward to it.
Allison: So, well, that line is up and running now. And so give it a call, and then yeah, more instructions when you will be on the recording. So yep, and then yes, we’ll have a support group on this topic, which I think people have a lot to say about, coming up. So look in the show notes and social media for the date for that as well. And if you want to get alerts for the support groups right to your email box, you can go to www.thenegativespace.life, and go to for caregivers, and there’s a whole Support Group link in there. You can put in your info, and then you just get an email in your inbox every time I schedule one, but we do one attached to every one of these episodes. All right, my friend, thanks for the good talk. Yeah, thank you for sharing. When you said a minute ago, I’ll be there with you on Tuesday. There for a second my brain was like, “Oh! you’re coming back?!” So that would be amazing, yeah, but it’s too bad that you live on the other side of the country, but no. All right, yeah, we’ll just keep looking at our pictures from last weekend and reliving that So, yep. All right, thanks, friend.
Justin: See you later.
Allison: Okay, Bye.