Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning, Allison.
Allison: Hi Justin. How are you?
Justin: I’m doing okay this week.
Allison: Yeah?
Justin: Sarah’s healing continues to go well. We’ve been going out on a lot of walks. She’s been walking a lot, which has been great. She’s, yeah, doing just really well and really happy that she seems to be bouncing back so well from the surgery. So that’s been great.
Allison: Oh, good. Oh, I’m so happy for you.
Justin: Yeah. And then Wednesday, I took the day off of work and went up to the mountains and saw some birds, and kind of hiked around some lakes, and it was just a beautiful day up there, and kind of a break from work and all of that, and just kind of some time for myself. Which is really, it’s really lovely to be able to do that, and kind of just get away from all of the normal draws on your attention and feeling like you have these responsibilities that you need to be taking care of. Just getting into a space where you’re kind of disconnected and unavailable and, you know, obviously that’s not a place we can go to all the time. Or, you know, for some of us that may seem like a really challenging or impossible thing to do, but I found, for me, in my situation, that really has been a helpful thing to try to schedule from time to time.
Allison: Yeah, well, and I love that for you. You’re such a good model of like, you know what fills your bucket. You know what I mean? And for some of us, it would be like, if I had a day, I don’t even know what I would do, right? And so, you know, like, I’m gonna take a day. This is the thing that fills my bucket. And I think it’s so important for us to know those things and be aware of those things, so that when we have those moments, we can do it, or when you can schedule those moments to say, like, this is what I need, instead of being like, Oh, I find myself with the day, well, I guess I’ll clean the garage. Or, you know what I mean? Like, it’s good to know what fills your bucket. I’m so happy for you that you live in a place where you can just be like, I’m just gonna go see the mountains for the day. That’s amazing.
Justin: What about you? How have things been going since we last talked?
Allison: Um, this week my daughter had her wisdom teeth out. So that was just a whole thing. I mean, obviously it’s routine and all of that, but that kind of, like, brought up a whole bunch of stuff for me too. Just because you know, it was like, Oh my gosh, now I’m a caregiver for her, too. And like, I was making a med chart for her, and like, giving gauze for her. And it was just like, oh gosh, you know. So fortunately, she is on the mend. But that was like, kind of a whole thing. And just even, like, when the anesthesiologist called pre the day before, you know, and some of the words, they just must learn in anesthesia school, like, and then we’re gonna drift her off to sleep. I was just having deja vu of, like, all of Sean’s stuff, you know? So that was kind of, it was more than I thought it was gonna be. But it was okay. Sean has actually had a couple of days of feeling good.
Justin: Oh, that’s wonderful.
Allison: It’s amazing because, you know, it’s like, we had the surgery and then we had the hemoglobin, and so it’s sort of like since like May 20th he has not really felt well. And so these last couple of days, I mean, he had a blood transfusion since last we spoke, I think, and that helped, like a boost. But then since then, he’s really kind of gotten back to his normal. So that feels great. We still don’t know why all his numbers were weird. We’re getting him checked tomorrow, and we’ll see, like, if they’re still weird. But he feels fine. Do we just say he’s a weird guy or what? You know, but the fact that he feels better is enormous.
Justin: Yeah, for sure.
Allison: So with that, he needed this blood transfusion, and he, back in the day, you know, like 13 years ago, he had a bone marrow transplant. It was one of the first things that happened. And after that, he needed lots of transfusions for months to come, or months afterwards. And so we would very frequently, for a while, every single day, we would go to the clinic, we would get labs, and then they would say, what do you need? And then they would give a transfusion of whatever it was he was low on. For months, this was, like, our world. It’s a big deal, and so. But we have not been in that world for a while, because now we’re sort of more in, like the cancer space. And so it was a little bit of, like messed with my head to be back, because also the space that they had open that day was in the bone marrow transfusion center. Not the cancer transfusion center. And so even going back into that space was a little bit like, whoa, you know? And then just the routine of the transfusion and all of that kind of was bringing me back. And fortunately, the clinic has been totally redone. It’s actually a whole new building since 13 years ago when he was transplant. So the space where we spent a lot of time getting these transfusions, is different, like doesn’t exist anymore. And so I did a post about the impact that spaces can have on us, and how I was grateful about that. And a lot of people responded, about just what it can feel like to have to go back to these spaces over and over again. And actually, even tomorrow, he has another esophageal dilation. And typically, when he gets those done, they’re at like, this branch of the hospital, like a suburb hospital, for some reason, I don’t know why. But tomorrow, I think just because this was the day they had open, it’s going to be at the big hospital. And we haven’t, have we been there? I don’t know. Well, I guess we were there when he was in the ER, but then also, last time I was in the surgery waiting room was May 20th, when he had this big gum surgery. And then everything kind of went to, you know where from then. So I’m even having all these feelings about going there tomorrow, sitting in that room that I have sat in too many times for too many surgeries over the last 13 years. All that to be said, let’s talk about spaces.
Justin: Let’s do that.
Allison: And how the impact of spaces on us, and the fact that we have to go to these spaces that are supposed to be places of healing, but also cause some trauma.
Justin: Yeah.
Allison: And then we have to keep going back there, over and over again. So I know that you, fortunately, have spent less time in medical spaces, but I’m wondering what your thoughts or experiences are with us.
Justin: Yeah, no, I’m glad we’re talking about this. And yeah, it is something that it feels like I have less experience with. It seems like our encounters with the medical world have been appointments where we’re trying to figure out what’s going on, but there isn’t this traumatic undertone to them, like procedures and receiving just horrific news, and having to take that in there. So it’s been different. I think that one thing that has been interesting is going back. We’ve had one appointment, we’ve had a follow up appointment for Sarah’s surgery. And, you know, I was wondering what that was going to feel like, going back to that space, walking in the same door, we’re going up the same elevators. We got coffee at the same place where I would get coffee and get a sandwich when she was in the hospital, but I wouldn’t associate, it didn’t feel traumatic. And, I think that’s because our experience in that event was, my experience was, I felt like we were very well cared for. It felt like we were being very well supported. And, as much as something like that can be a positive experience, it felt like a positive experience. And it was something that we knew, you know, we went in knowing what was happening, and it was like, here’s the thing we’re gonna take it out to. It’s gonna be helpful. It wasn’t, it was scary, yeah, and certainly there were moments where things were pretty rough. But yeah, just overall our interactions with the medical system have felt different in that regard.
Allison: Yeah. Let me hop in quick and just clarify that I think, well, I’ll speak for myself that I think that the trauma has not, certainly, there have been moments where it’s like a medical professional has been, you know, unkind or insensitive or whatever, right? But it’s not so much for me that like, oh, this was a bad experience with the medical field, right? It was more like, there was a time years ago where I took Sean to the ER, and he was like, not well, and he was in the wheelchair. And I kept saying, like, you got to take him back, you got to take him back. And they just kind of, like, weren’t listening. I guess I am giving an example of them being insensitive, but that wasn’t the point. And then eventually he, like, passed out and like, slumped out of his chair onto the floor. And then I was banging on the admissions window, and I was like, he’s on the floor! So since then, that ER has been re-modeled, right? And so if it hadn’t been, I think I would have a really hard time walking into that space and being, not so much mad at the people, but being like this is where my husband laid on the floor. You know what I mean? And there’s a trauma, because then that day, they brought him into the trauma ER room, and we’ve been in the ER a million times, and sometimes I walk past that trauma ER room, right? And so, I think sometimes it can be like an interaction with a person, but sometimes it’s just like a terrible thing happened to my person. I witnessed something really hard, really terrible, really scary, really sad, or something happened to me, you know what I mean? In this room, in this building, in this hallway, and now I have to go back there. So I think all the time about, like, you know, if I was attacked in a dark alley, right? Nobody would be like, you know where you should go? Back to that dark alley. But that’s what this is like. It’s like, tomorrow, they’re like, oh, yeah, come to the hospital, sit in this room all day. Like, what? You want me to sit where? In the same room, you know? And there’s no, I think, the fact that there’s no, like, sensitivity to that, like, whoa, this might be a hard space for you, you know?
Justin: No, certainly, that’s good to bring up, that just the existence of being in the spaces where these events happened.
Allison: Yeah
Justin: Less than the interactions with the staff, necessarily.
Allison: Right.
Justin: Yeah. And so, you know one thing, when Sarah was coming out of surgery, she was in immense pain, and it was really difficult for them to get her pain in control. They brought me back at a certain point, and she was in one of the worst states I’ve seen her, and that was a terrible experience. And thankfully, like, it’s probably very unlikely that we will have to go back to that space. Like, for her to have another surgery there, for me to be in that waiting room knowing what’s going on. Like that one point the nurse called me from back there, and I could hear her just like, moaning and pain in the background, and it’s just terrible. But that feels, at least, that’s a one-off thing for us, whereas, you’re having to go back to the same place over and over again, which is terrible. But it’s the place where you need to go, and it’s the place where they are, it’s a place of healing as well. And I guess, that’s the weird juxtaposition.
Allison: It is.
Justin: I think the closest place that I can think of where I would have a similar reaction, I think, is the place we lived prior to moving in with Sarah’s parents. Where I think if I were to be back in that condo, I think that would be a really rough feeling, because that was the place where all of the terrible things, where she was in pain, in bed for years, and like to be in that bedroom, I think would be a pretty emotional experience. To be back there. And thankfully, there’s no reason for why I would ever knock on that door and say, Can I stand in your bedroom and see that? So I avoid that, but it must be so challenging, and that’s putting it lightly, to have to face these spaces over and over again. Because I think one thing with a traumatic experience, like, you can do the work like, whether it’s therapy or whatever you’re doing, to process that to move forward, to reintroduce yourself to environments where you previously would have that panic. But you’re in these spaces so frequently, you would constantly be having to go through that and like that doesn’t feel like a practical right thing. Like that would take, unfortunately, and so I have a lot of sympathy.
Allison: Thank you.
Justin: For you and others who this is such a big part of their caregiving life.
Allison: Yeah. I mean, I think I used the analogy once, it’s like brushing your teeth while eating Oreos. Just trying to, like, process this. And my therapist even, like, sort of alluded to that the other day, that basically, like, we can’t really be working in your trauma, because you’re still in it. You know? And so, I think it’s, I know there’s complex PTSD, but I wonder, I’m sure there is some sort of, also, like, continuous, right? Because I think again, like, if I had been attacked in a dark alley on one day, I could then go to therapy, right? And like, let’s talk about that night, and let’s like, you know, and then let’s, in a safe way, go back to that dark, you know, right? It was this one time. But this is like, over and over and over and over. And so it’s like, you can’t even really go back to be like, let’s process that one time, because the next thing is just coming down the road at you already. And so, like, I haven’t really processed, like, what happened on May 20, the last time he had surgery. Or that on May 27-ish, we were in the ER. But now tomorrow is July 1, and we’re going back to that space. And so when I posted about this the other day, a lot of people popped in and commented about things like remembering the exact, like, square of carpet they were standing on when they got bad news, and then having to, like, walk over that square of carpet when they were there again. Somebody talked about avoiding their own health care because it’s in the same system. And I have figured that out too, that, like, we have the same insurance company. And so I’ve been like, I don’t know, I needed some kind of routine something recently, and I was like, oh, no, I’m not going to that clinic. Like, I will drive to any suburb you want me to, but I’m not going to that clinic for my labs, you know? And even, so you know, Sean’s care is at the University of Minnesota, and you can see the giant building as you cross over this big bridge going across the Mississippi River, on the highway. And so even, like, when you are just driving on this major, major highway, it’s like, there’s the hospital. And for a long time I would have to drive that a lot, and I would just belike, ugh, I would just have all these feelings come up. And a lot of people, because we have, you know, a lot of listeners who are here in the Twin Cities who use the University of Minnesota for healthcare, and talked about that bridge. And, somebody was like, I almost caused an accident because I don’t like looking at it or swerving or something, but, just the feelings of even like going near it, you know?
Justin: Yeah.
Allison: I just think, I mean, there’s no solution, right? We’re not here for solutions, but I think we have to start with at least acknowledging it, right? Like, so tomorrow, when I go back to that room, I’m already thinking, like, what can I do?
Justin: Yeah, that’s what I was going to ask. Because you’re right, you’re going into this space. You know that this is likely to happen, have these feelings. So how do you prepare for that? What do you anticipate? How do you take care of yourself in that moment? I imagine that this is also, potentially, as caregivers we’re traumatized by these spaces. But I imagine also the people we’re caring for often will have similar experiences, feelings and reactions to these spaces as well. And so as caregivers, we’re also caring for them, and that’s part of what their experience is. And yet, we also have to be aware of how these experiences are affecting us and what we can do for ourselves as well.
Allison: Yeah, for sure. Yeah, I think again, so many procedures, but if it was last time, or one of the times that I remember Sean, it was more when we were in, like, the pre op space, you know? All the people are coming in and they’re asking about history and he was just, he said something about that day. It just made, like, all of the other times that this has happened come flooding back, like it was just this giant deja vu of, Oh my gosh. I have done this so many times. You know? But to answer your question, so I’m thinking about tomorrow. I’m thinking about seeing if perhaps my mom, or maybe my brother-in-law will come with me. Sometimes I enjoy having another person. Sometimes I’d like to just, like, zone out and not talk to anyone, but I’m thinking for tomorrow, it would be helpful to have another human with me.
Justin: Okay.
Allison: So, I’m going to ask that. I’m also thinking about, I mean, the hard thing is, I’ve been there so many times that it’s like, even the outside spaces have all the memories, you know? I was like, what if I don’t sit in the actual room, like, what if I sit in the hallway? What if I sit outside? What if I? You know, but again, I have sat in all the spaces. I’ve tried them all. They all have memories. But I was thinking, you know, I don’t have to be in the room, in the room, and so I’m thinking, even if they have a new, overflow spot in the hallway, then maybe I’ll do that. And the hallway spot has access to windows, like looking outside might help. And so those are a couple of, like, sort of simple things that I’m gonna do. I mean, I think again, acknowledging it is a huge one. I think, whether that’s in the beforehand, in the moment, or afterwards, right? Sometimes in the moment, we just have to, like, go and do whatever. But even afterwards, to be like, Why am I so tired? Or what did that feel like to be in that space? Or like, today, I’m feeling kind of anxious. And then part of me is like, what’s your deal? But it’s like, oh, well, of course, right? Of course, you’re feeling anxious because tomorrow, this thing’s gonna happen and, that’s bringing it all up, you know? And so just sort of giving yourself grace. And I think for me, it helps when I understand why the feeling’s happening, right? I’m feeling anxious because I’m going back to a space that has caused me trauma in the past. That makes perfect sense. Doesn’t make it go away, but it helps me to, like, acknowledge the, you know, the answer?
Justin: Yeah.
Allison: Yeah. I think that you called it a juxtaposition before. The thing that messes with my head, too is that it’s not like we’re going to a torture chamber. I mean, we sort of are, but, you know what I mean? So that’s the weird thing. That we’re going to this space that you, as you mentioned, is a place of healing, or asking to go there, paying a lot of money to go there, right? Sometimes we’re on wait lists to go there. But then you’re like, I don’t want to be here. And so, how do we hold the yes and of that? Like these people are doing terrible things to our people, but it’s also a healing thing. love this place, but I also hate this place. Because I have found myself, in recent years walking into the hospital and my brain starts going, I hate it here, I hate it here, I hate it here. And I want that voice to be able to be voiced. But I’m also like, yes and if this building didn’t exist and the people in it, you wouldn’t be alive. And I don’t know how to hold both of those. I mean, I just do, right? But they’re conflicting thoughts.
Justin: Yeah, that sounds really challenging to manage that. And I wonder too, you know, you’re going into this place, yes, it’s a place of healing. Yes, you’ve witnessed these traumatic events. You’ve seen your person sliced up, and, you know, all of those things. And I wonder too, if there’s a piece of, every time I go into this place and something like this happens, my caregiving load increases exponentially in the aftermath. If that, how that impacts our feelings of these spaces, as well, is that we associate this with the increased draw on our time and attention and all of that, for in this caregiving role. We know that coming out of these spaces, we’re going to be less able to focus on ourselves and process what we’ve gone through. We’re in a place where we’re so preoccupied with our person that it’s hard to make that space to understand what just happened. How do I make space for me to just, I don’t know, if process is even, because you’re going through it so much, I don’t know how processing works in something like this. But, as you said, to recognize it. I don’t know. I wonder if that piece, does that sound like something that resonates a little bit?
Allison: Yeah, for sure. Because I think about when he had his bone marrow transplant. I mean, on paper, he was not well, but you wouldn’t know that about him. And so we went in, and I always joke he could have, like, essentially cartwheeled down the hallway into it, right? But then they were the ones that, like, pumped him full of chemo and radiation and almost brought him to death. And then the person that I wheeled out of there, 33 days later, 38 days later, was a very different human, right? And they did it to him. So even with Sarah the other day, right? Like, obviously this thing was in her, right?
Justin: Yeah, right.
Allison: But she, like, probably walked in there, was feeling okay, you know what I mean?
Justin: For sure.
Allison: But then the person you wheeled out of there, right? And so, yes, they did something that was very important, that has now led to a better outcome. But I think that it’s different from, let’s say you get hit by a car and you’re like, I’m broken and I need help, fix me, right? Because it’s not this visible, like tomorrow, Sean feels okay today, right? But tomorrow they’re gonna mess him up in the name of healing. And so he’s gonna need, from the caregiving lens, he’s gonna need more support and all of that tomorrow. And I think for me also, there’s the piece of like, last time was supposed to be this tiny little surgery that was like meh, and it turned into a whole thing, right? Like, a whole four or five, six-week thing. And so I’m like, tomorrow is supposed to be small. You know what I mean? I can’t predict anymore. And I don’t want to say I don’t trust the system, because it’s not the system’s fault. Like, we just don’t know. But I think there’s this sort of unknowing.
Justin: Yeah, you’ve experienced enough of the different turns a quote, unquote, simple procedure can take that you’d know not to assume that a simple procedure is necessarily going to be a simple procedure. You don’t have that naivety going into it, or that ignorance about what can’t happen. You’ve been exposed to it all.
Allison: Yep, in that very space. In that very space. Because, I think even, like with the ER thing, you go to the ER because you’re very unwell, and then you leave, hopefully in a better space, right? You go there for that. But I think there’s something about planned surgery or procedures that feels like, when it’s an internal thing, that feels a little like you’re doing this to me Like, I’m gonna leave here in worse shape than I walked in. Which is, so again, that’s where it messes with your head, right? It’s like, in the long term, in the big picture, like, if you hadn’t had that bone marrow transplant, he would not be alive. Right? If Sarah had not had that thing removed, right? Like, all of these things, right? So we’re grateful for them, but also we’re like, really?
Justin: Yeah.
Allison: And I don’t know. I don’t know how to hold that, you know? And I think because, sometimes in my brain around that building, I’m like, I just want this building to, like, fall down. I want to set this building on fire. I want to blow this building up. Pacifist Allison over here is thinking all these violent thoughts about this building, right? And we would be in big trouble if that happened, because we need this building. And this building has saved his life multiple times. But there’s something that comes up in me of, like, I hate this building.
Justin: Yeah.
Allison: And I think part of it is I hate that we need it. I hate that we know the ins and outs. I hate that I could tell you what floor all the different things are on, and the hours of the cafeteria. I hate that, like, we’re walking through the clinic, and then someone is like, hey, Allison and Sean.! Like, I don’t want to be a familiar face right at the oncology clinic. You know what I mean? So I think that it’s just the hate of the situation, you know what I mean, of like, ah, you know?
Justin: Right. It’s kind of like what you’re describing there feels like when you are faced head on with the seriousness of your person’s condition? Like when you’re at home, you’re at home. And you’re not seeing all the medical staff that you recognize, you’re not realizing that you, like you said, you know, the ins and outs of this hospital building.
Allison: Mmhmm.
Justin: You can kind of forget a little bit. You have an opportunity to potentially, not that you always can, but you can’t do that there? Does that resonate?
Allison: Yeah. I mean, I don’t know that I would ever say like, you totally forget here, obviously, but I think you’re right, that there, you can’t shove it down, right? You can’t, like, pretend that we’re just like a regular family. It’s like, Nope, we are here, and he’s a cancer patient, I’m a caregiver, and that is who we are. And it’s just, like, in your face as you’re walking around. And you’re right, you can’t just be like, Oh, it’s just a little blip. You know, it’s like, it’s everything.
Justin: Yeah. That’s something that actually rings true for me in some of our early appointments, trying to sort out what was going on with Sarah. So one of her initial things was having this intense, intense, constant headache. And there was a headache specialist that we went to see who was fantastic. But we would drive, it was a couple of towns over. So it was, I don’t know, maybe, like, a little over an hour drive. And getting Sarah in the car and set up for that drive was a lot. We would get there, and it was a headache clinic, so they were set up very well, but they had, like, a fancy cot in the exam room where she could, like, lay down. And then I would sit and talk to the doctor. And, like, you can’t ignore what’s going on. When your person is, like you’re at the doctor and you have to do all of the communication for them. Like you have to go over with them beforehand as best you can, what we need to talk about, how you’re feeling, all these things, and then relay that to the staff yourself all while they’re kind of laying there, unable to do much of anything.
Allison: Yeah.
Justin: And those were certainly moments, very sobering times of like, this is a big thing that we’re facing. So that does, of all the things we talked about, that feels like it hits the most. Less of the space and more what the space brought up as unable to look away from what was happening.
Allison: For sure, yeah. And I think, I mean that you paint the picture so clearly. On those days, I’m positive that you were the one who drove.
Justin: Yeah, right.
Allison: And that you got her in the car, and that you drove more than an hour, and then she gets there and she’s lying on a cot, and then you’re doing all the work. And I’m not making it out to sound like she’s lazy, right? She didn’t feel well.
Justin: Right, for sure.
Allison: But I think about that on these surgery days is like, I always kind of joke, Sean gets a good nap.
Justin: Right.
Allison: He’s unconscious. And I’m the one, you know communicating with the family, and then watching the screen, and then, you know, getting the directions afterwards, and, you know, driving home and all of that stuff. And so, like he gets to be sort of more of a passive receiver, if that makes sense?
Justin: Yeah.
Allison: And I’m not saying these things are pleasant, right?
Justin: Right, yeah, yeah.
Allison: Ooo, surgery’s so fun, right? But he gets to sort of sit, sit back, and, like, the things are done to him, which also can be terrible in its own way, whereas I have to be like, on alert, yeah, from beforehand to the, you know what I mean? Even, like when they’re talking, okay, if it’s nine o’clock tomorrow, then what time does he have to stop eating and drinking? And, you know what I mean? Like, all of the things to be on, before, during and after. Whereas he is the recipient, and so it’s happening to him, right? And then he can come home and be like, Okay, now I go right to bed, and I’m like, okay, I’ve got to go to the pharmacy and dot, dot, dot.
Justin: I wonder, with that, if there’s also a piece of yes, he’s there. This is being done to him. It’s the passive thing. But everyone that you’re interacting with is there for him to be focused on his condition, improving his experience, like healing him.
Allison: Yep.
Justin: And I know often as caregivers, we feel like we are invisible to the world around us. People are asking how our person is doing. They’re not checking in on how we’re doing things like that. And when you’re in these experiences, all of the staff is there for your person. When you’re there, the staff is there for Sean, no one is there for you.
Allison: Yep.
Justin: And that, I would imagine, can feel really isolating or something like that.
Allison: Absolutely.
Justin: It really brings into focus the, I don’t know, the lack of support this role has?
Allison: An acknowledgement and recognition all of it, yep. And I mean, this is what I’m trying to do in my work. I’ve actually, like created a tool that I’m trying to finish about this very thing. About helping healthcare systems better support caregivers. And one of the things is, what does the pre op room look like for the caregiver? What does the surgery waiting room look like for the caregiver? Because last time we were there, I kid you not, there was someone like, lying on the floor, like sleeping on the floor, like a caregiver. And I was just like, This is terrible. Like, we have got to do better. And The Price is Right is always blaring. It’s like, what is happening? Where are we? Like, it’s just awful. And so, so you’re right that we’re in these spaces and we’re just going through this really hard thing. And at least for him, they’re like, Okay, warm blanket. And how’s your pain? And for me, they’re just like, Okay, we’ll call you when we’re ready. I think another piece of this that I have heard from folks is when your person passes away in a medical space, or maybe not an even medical space, but like, sort of what that brings up for folks. So I have a good friend who had a liver transplant at Christmas time, and we have a mutual friend whose husband also had a bone marrow transplant around the same time as Sean, and he passed away in that hospital, the same hospital that I’m going to tomorrow. So she and I went to visit our friend who was about to have a liver transplant, in what I call Sean’s hospital, and we were both coming at this from a really intense perspective, right? For me, it was actually really hard. I was torn, because I was like, of course, my friend, her liver is here, and this is an amazing day, and I want to support her. But also I was like, Oh my gosh, being in this building is awful. Like, I don’t want to be in this building on day I don’t have to be in this building, you know? And then this friend of mine who was there was like, you know, essentially, like, this is the building in which my husband died. And so then there’s that piece as well. And in fact, I, at one point years ago, was on the Patient Relations Board because I was like, I want to make changes. But the meetings happened in the hospital. And I got to a place where, like, the day before the meetings, I would get all anxious, and I would be like, I don’t want to go to the hospital the day I don’t have to go to the hospital. And eventually I was like, I can’t be on this committee anymore. Like, if they had met at a Starbucks or something, I would have been like, sure. But I was like, I can’t go into that space on a day that I don’t need to be there. You know? And so I know even, you know, we recently had this caregiver conference. And it was on the campus of the University of Minnesota, so not even at the hospital. But just the fact that it was on the campus, we had a couple of people who were like, I can’t do it. And actually, even when my daughter was looking at colleges, her school took her on a tour at the University of Minnesota in Duluth, which is couple hours from here, but it’s a whole like chain, versus school system. And she, when she came home, said, I mean, there are a number of things she didn’t like about it, but she was like, all of the logos, all of the colors, made me think of the hospital. And there’s no way I could go to a school, a U of M school, because it all just made me think of the hospital. You know. And she’s been there, like, a fraction of the time that we have, but also, like, in really traumatic situations, terrible situations, of her young life, and so even the logos, right? Like, really impacted her, so much so, that she was like, I’m not gonna go to a college where I’m surrounded by that and feel like I’m at the hospital all the time, right.
Justin: Right.
Allison: So, I mean, I think there’s, no way around this, right? Like, we have to go to these places of healing. And I think part of it is just saying these things out loud. Saying the things out loud to each other, saying them even to the staff, like, it can feel really hard to be here, you know? Yeah, I think that that’s a huge part. I think I’m trying to figure out if there’s anything that any kind of, like, I don’t know if it’s a mantra or something, as I go into tomorrow, as I go into these days, of saying, I think some sort of yes and. It’s funny, I’m trying to decide which phrase gets to go first, sort of the negative or positive, right? Like, is it this place holds a lot of hard memories, and it is a place of healing? Or is it, this is a place of feeling, and it holds a lot of hard memories. You know what I mean? I can’t, because it sort of feels like one gets more power than the other. I’m not sure. But I think it’s something that I want to come up with that’s sort of a combination of the two, because I also don’t want to lose the fact that this building has kept him alive.
Justin: Yes.
Allison: And I feel like that should get some recognition, you know, and that should help my worried brain realize, like, there’s a reason that we are coming here. Because I’m sure there’s part of my nervous system that is like, why are you doing this? Why are you going there, right? And to be like, hey, hey, nervous system, like, we’re doing this on purpose. Like, there’s a good reason that we’re doing this. It is a place of healing, and it holds hard memories. I don’t know if it’s also, and there are things I can do to support myself while I’m here and after or something, you know.
Justin: Yeah, preparing for this, given that it wasn’t something that I felt Ilike I had as much exposure to or experience with, or maybe even insight on, I tried to do some reading, find some articles, whatever, you know. And one I found it a hard thing to search for. It felt like there was a lot around the patient having these traumatic experiences, and that, I thought I had found a good article because it was titled, like, caregivers and medical trauma, or something like that. But as I read it, I realized that when they spoke of caregivers, they’re referring to like the hospital staff, which I mean, they’re also going through these events, but they’re not invested in the lives of these people in not nearly the same way that we are. But it did have, what they call the three R’s for kind of going through this and like, you have these experiences which they refer to as a stress injury, which I thought was an interesting term.
Allison: Ooh yeah.
Justin: Especially given the sense that, as a caregiver going into these spaces, I don’t know, you have a chronic stress injury.
Allison: Yeah, yeah.
Justin: And you’re constantly reinjuring it.
Allison: Before it is healed.
Justin: Intentionally.
Allison: Yes, intentionally.
Justin: Terrible, terrible, terrible.
Allison: While it’s still not healed.
Justin: And so they had these three R’s for how to get through this, recognize, recover and rebuild. And it’s like, well, how do you recover from something you keep exposing yourself to or have to? But within the recognize piece, there was something about paying attention to our emotions, because they help us figure out what we need to take care of, what or how we need to take care of ourselves. So it’s like our boardroom that we talk about, you know, I don’t know if it’s something where, yes, you recognize that you feel terrible going into this space, but if there is a giving yourself time to recognize, okay, what exactly are the emotions that I’m feeling this time? And how can I care for those specific emotions? Like, is that telling me is it something where it is anger, that these people are inflicting such pain onto your person? Is it something where you are scared, or if there’s fear that, like, it’s going to take a turn, and using that as kind of a guidance for what you need.
Allison: Well, I think it’s even like me in this conversation being like, oh, that’s why I feel anxious today. of course, I feel anxious today. And that’s, you know, my new favorite phrase. Of course. Yeah, it makes perfect sense, Allison, for you to feel anxious today, because you’re gonna go do this tomorrow. And so even to give myself the grace, because I think sometimes I have emotions, and then I’m like, What is my problem? But to be like, Uh, duh, of course, you feel this way. And so then what can I do today and tonight and tomorrow early to support myself knowing that I’m feeling anxious about tomorrow? And I think the recovery piece thinking about what is that like? You know, we’ve talked a lot about hangover day, and so what can I do tomorrow afternoon, tomorrow night, on Tuesday, to really care for myself afterwards? What can I even do in the middle of it? What can I bring with me? Is it a person to ask? Is it someone on the phone? What is it, right, that I can do t comfort myself in the middle? Yeah. So I think just like, knowing you’re going to do it, and then surrounding yourself with all of that. So like, we started talking about you and your mountains, right? And so, yeah, like, if it was you to say, like, Okay, so one of these days, like, maybe the day of, I’m gonna, like, be looking at the pictures that I took of the mountain, and then I’m gonna plan a Mountain Day as soon as I can to help myself recover. You know what I mean?
Justin: Yeah. So you said that one of the things that you’re trying to do with The Negative Space is like, influence the medical field to better support caregivers, right?
Allison: Yep.
Justin: So we do have some medical providers that listen, and maybe our listeners know other people who are in that field? Like, certainly, we don’t have time to get into all of the changes you would like to see, but as it relates to this specific topic, what would be the one takeaway that you would want the medical field to have, or what’s the one thing they could change or pay better attention to make this a more bearable or less isolating, or whatever experience?
Allison: Sure, beautiful question. Thank you. I think acknowledgement, it all comes down to acknowledgement. So if the providers tomorrow said to me, to me, things like, Oh, would you like a chair? Oh, would you like a warm blanket? Oh, can I get you water?
Justin: Caregivers should absolutely get warm blankets.
Allison: Yes, yes, of course.
Justin: They have plenty of them.
Allison: And then to say, I know you’ve been here a lot, and that must be really hard to come back to this space. We’re going to do our best to take care of him. Is there anything we can do for you? You know what I mean? Like just like that phrase itself. I mean, there’s lots of structural things that I have ideas around, around the room itself. Um, but I think that acknowledgement would go a long, long way. And then I think, as we think about our informal supporters. So same. Like, what for people, people to tomorrow? Let’s just take that as an example, instead of just saying thinking of Sean, hope all goes well with Sean tomorrow. Thinking of you, Allison, as you move back into this space that you’ve been in multiple times. I’ve had people, you know, offer would you like me to come with you? Do you want to chat? People have texted and said, like, I’m just here on my phone if you want to chat, if you want to text, do you want me to send you funny memes? Do you want to talk about this? Do you want to be distracted? You know? On long surgery days, people have said, can I send you food? You know, again, I think the acknowledgement of it. And then, what are the things knowing that the caregiver is about to go through another trauma? What are the things that our people, can do to sort of again come around us, right? Is it someone saying, like, hey, what can I do for you on Tuesday? You know, Tuesday is often hard, the hangover day. I would love to send you dinner on Tuesday. Or, you know what I mean, like, what are the things to sort of support us in that? What was the second R, recover?
Justin: Recover and then rebuild.
Allison: So, to aid in that recovery piece. And maybe it’s not immediately, but maybe it’s a couple days later. Hey, I know that you had this hard thing on Monday. I would love to come sit with Sean so that you can go take a walk or whatever.
Justin: Something occurred to me as you were talking there. We often talk about the hangover day and supporters doing what they can to take things off our plate in the days after. Right? What would it feel like if someone, the day before a surgery brought you dinner knowing that you have this hard thing coming up and like maybe you don’t want to spend the energy on cooking the night before it, you know to have something, or to go into it feeling cared for. What do you think about that? I’ve never thought of that before.
Allison: Yeah, no, I appreciate that. And I think if someone offered, I think it could go either way. It could be like, I’m feeling so nervous, I don’t even want to eat, right? Or maybe he can’t eat, you know. But I think an offer of like, Hey, I know surgery is tomorrow. I would love to drop dinner off tonight, if that would feel helpful, if not pick a different night. Or if someone said Hey, I know surgery is tomorrow, and I imagine being in that space is really hard, on your front steps I just put some things that might make the day a little easier. And maybe it’s like, whatever, you got to know your person. I’ve had people in the middle of the surgery or it could be the day before the day or after, send a $15 Venmo. That’s like, go down to the coffee shop and get yourself a treat, right? So, I mean, all of these things, it’s not about the money. It’s not even necessarily about the items. It’s about the recognition. It’s about someone saying, like, I see you. I get that you’re in a hard, physical space right now, and I’m here for you, right? And so all of those are just, it’s sort of like supporters, think about, like, what’s your love language, or what’s your skill set? You know, you’re a fix it guy, person. Be like, while you’re at the hospital, I’m gonna come fix that fence that you’ve been talking about. You know what? It doesn’t always have to be money, or doesn’t always have to be food, but just like, show up for your people in a way.
Justin: That’s good. I think one other thing as a supporter or someone who knows a caregiver, to keep in mind is that if, for whatever reason, you or someone in your life is in the hospital, be sensitive to the fact that visiting might be very difficult for the person in your life who has had to endure so much and witness so much in that space.
Allison: Yes
Justin: And so, whatever that looks like. I mean, it could be, maybe your sibling is caring for their spouse, and you’re in the hospital, and you have a baby. You’re there and you have a baby, and it’s too difficult for them to go to the hospital and to see the baby. Be sensitive to that, don’t take that personally. Know there’s a lot going on at play there.
Allison: I’m really glad you brought that up. Some people commented about this, like I was bringing a friend to the clinic for their appointment, and then that’s when I stood on the carpet space where the doctor told me this news, and even, like, with the friend with the liver transplant, I eventually had to say, I love you so much, and I will FaceTime you. But I can’t keep going to this hospital. And we had another friend who listens to the podcast, and his wife was very sick, and he had this whole Caring Bridge, or the thing set up of here’s things you can do. But he said, Allison, you will not sign up to come sit with us in the hospital, I will not let you. And I was like, Thank you. Because again, it was the same ICU, right? But even if it’s not the same building, which for many of us here, it is, all of that can be so triggering. And so, I am so glad you brought that up to be sensitive to that and not think that they’re whatever, but just like they can show up for you in their own way at the you know, and again, picture it. You wouldn’t make them go back to that dark alley you were hanging out there. So, yeah, okay. Well, this has been helpful for me. It’s helpful to process some of these things going into tomorrow, and I feel a little more prepared for it.
Justin: Well I’m glad.
Allison: I have to make a little plug that last night I saw Inside Out 2. And it’s so, so good. And you know, we’ve talked about that because of the boardroom. It’s just really genius. And so I just encourage folks, and I know as caregivers, often you can’t get out. So I’m sure that at some point it’ll be on Disney plus, or whatever. It’ll come to streaming, but if it is still in the theaters, and it’s just, it’s brilliant, so, and it’s also like, she’s a teenager now, and so there’s a lot, like, anxiety is the main character of the film. So I think there’s a lot that we can learn from. So I hope someday you will see it and we can talk about it.
Justin: I will.
Allison: Okay, good. All right. Thanks for talking, friend, and as always, my friend, as long as life. You know, you all were very patient with us while both Justin and I sort of took a little hiatus with both of us having things going on and took a little break from the podcast for a bit and took a break from the support groups. But hopefully we’re back on so keep an eye out, and we will likely have a support group around this topic. I’m sure there’ll be lots to say.
Justin: All right.
Allison: All right, take care. See you soon. Bye.
Justin: Bye.