Transcript
You’re listening to InSickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning, Allison
Allison: Hi Justin. How are you today?
Justin: I’m doing okay. It’s been a busy month. And so just, I don’t know, a lot of activity this month, and so I’m kind of a little worn down but yeah, still moving forward.
Allison: Good activity, hard activity?
Justin: Just, just busy. It just feels like every week there’s a lot of things, and I don’t like my calendar being that packed, even though sometimes they’re good things. Just when there’s so many, so much going on, there’s not time to kind of rest and just be.
Allison: I hear that.
Justin: I’m hoping October will be a more relaxing month.
Allison: Yes, I hope so too. Yeah. I feel like, with September, it’s a funny thing. I can never remember, like, the number for September, nine, right? But I think it’s because September is always such a blur, you know? And I spent so many of my years of my life, either in the school system or working for the school system. And so, I feel like September just doesn’t even exist. You know? It’s just like so much that it’s just–what just happened? So, yeah, I think there’s a lot of that going on.
Justin: How are things going for you this week, or lately?
Allison: Well, I think about the expletive I used last time, and apologize for that, if that was hard for anyone’s sensitive years. It’s worse than that one, but I won’t use a worse expletive, how about that?
Yeah, so Sean, on Thursday, went in. A great thing is that they’re trying to figure out this G tube situation. At first, they were like, we need to do this procedure. We’ll get you in in like six weeks. Oh, so, speaking of like advocacy and Enneagram, this is kind of a good combination of that, because Sean and I were both on speakerphone with this nurse, and Sean said, Okay. I mean, it’s okay, sure, Sean, sweet Enneagram 9, peacemaker Sean, it’s okay.
And I said, No, it’s not. I said, Look, this is impacting his daily life. He’s in constant pain, he can’t eat very much, he can’t drink very much, and he can’t do much without being in pain. So we can’t wait that long.
And she was like, okay, okay, we’ll do what we can. You know, again if we had just gone with sweet Sean, or if I hadn’t said that…And also, sometimes, you know, systems only can do what they can do, right? Like, a day later, they called and said, we can get you in this week. That’s great. Which we were like, yes, thank you.
So we were just expecting not a huge deal, like he said. So it was going to be an endoscopy, where they’re going to go in, they were going to look around, which they’ve done a bunch of times, because people with Fanconi Anemia have a high incidence of esophageal cancer. So look around for that, and then while they’re in there, go through and add a little clip that they call a bear clip, to the back side of where this hole was from, is from his G tube to try to clamp it off. And he’s had, you know, not the clip part, but the other part, like, a bunch of times.
So first of all, like, just going, going to the hospital. I mean, I could talk for days just about that part, right, being at the hospital, this hospital that I’ve been in a million times, just like the repeat trauma of that, of being in this building, My brain just kept saying, I hate it here. I hate it here. But I was trying to remind myself that this is also the place that is a place of healing, you know, like, but also I hate it here, you know.
Justin: Yeah, yeah.
Allison: So anyway, the surgery itself went as well as it could. They did biopsy four different spots, but they’re not too concerned about them, still waiting for results on that. But he usually wakes up from anesthesia and is hilarious. He’s singing. It’s a great time for everyone involved. And he and the nurse become best friends. And on the way home, he’s Well, I want to get McDonald’s. That’s the way this usually goes.
But I went back there and he was, in rough shape and in so much pain and immediately full of so much congestion. It’s very bizarre. And they’re well, he has a cold, right? And I was No, he did not have a cold when I left him. What did you do to him? Right? So, so much pain and so much gunk. Could not speak.
And they do say, every time you get intubated, you might have a sore throat, but this was beyond. And I keep trying to explain to them this is a guy who has the highest pain tolerance and who has been through everything. So if he says it hurts, so again, they ask, what’s your pain number? And he was like, seven. I was okay, that’s like a 43.
So anyway, that was Thursday. Today is Sunday, and he continues to be in excruciating pain. They sent him home because there wasn’t much they could do. They gave him pain meds, but he still can hardly swallow. You know, the gunk is just intense, and so he’s coughing, but then that hurts, so we’ve had to call in and get bigger pain meds. As of this morning, we just started him on some steroids because they said, Okay, if it’s not better by this time to try that and see if that helps.
It’s just been awful, and especially because I think we didn’t expect it, right? Usually he just is, oh yeah, I had this procedure and it was rough, but I feel okay. And so he keeps saying, I didn’t expect this to happen. And I’m like, I know. I didn’t either. And so they say it’s probably just that the clip scratched his throat all the way down, but still.
So it’s been terrible, and it does not feel like the end is in sight, and we’re on day four. So that has been unexpectedly awful. Yes, it has felt very acute, like acute caregiving. I’ve got the dresser top full of medicines and keeping track of what hour did he have this and what’s his pain number, and I’m checking the thermometer and checking his oxygen, feeling very like acute at this moment, so I’m a little bleary this morning,
Justin: Yeah, I would imagine.
Allison: But I’m also happy to be here because, this is also cathartic for me to be with you and to talk about these things. So ironically, we had picked this topic, or I had thought of this topic before all this happened, this latest thing, but at the latest support groups, the topic that kind of came up was how hard it is to watch our person suffer. Yes, that is a huge part of caregiving, having to be a witness to that. And for those of us who are chronic illness caregivers that is like a long term, the long term witnessing, right? Not just like a car accident, witnessing something, moving on. It’s a long term. So already I sort of had this topic in the back of my head, and now that’s what I’ve basically done for the last four days. Witness my person suffer. So shall we talk about it?
Justin: Let’s. Yeah. Let’s talk about it.
Allison: She says as she guzzles her coffee. So anyway, why don’t you start off, what are your thoughts on that? Or what has been your experience in sort of being, having to be a witness to your favorite person in the world, in pain and suffering?
Justin: Yeah, certainly, it is something that I have experienced. Thankfully, it is less so now. But I mean those years where Sarah was in bed, I mean, there would be times where she was in extreme pain, uncomfortable. And, you know, we had some things we could do to try to, like, mitigate that, but we didn’t. It didn’t feel like we had a ton of tools, but we would do the things we had, and it didn’t always make a difference. And so it’s just like you’re stuck in that spot, and you feel so helpless.
I think that an overwhelming sensation of it is that, I think as caregivers, we so much want to be doing, be fixing, or have at least something that we can do, like be active in this. And that you get to this point where there’s nothing more you can do, and you’re just there with them, and it’s really hard.
Allison; Yeah.
Justin: And I remember the one thing that you can do, and you kind of use this phrase already, but bearing witness to their suffering, and that is something you can do, because that, I think, is validating for them to know that what they’re going through is seen and seen for the, I don’t know, the magnitude that it is, and it’s not…
And I think just being with them so that they are not alone in those moments too. I think it may be that doesn’t feel like we’re doing anything. But I think our presence in those times can be helpful too. But yeah, the overwhelming helplessness is what I remember is just like…yeah, it’s just horrible.
Allison: One of the first words you said was years. You’re like, I remember the years. Yeah, that Sarah, the years. So I think that’s a thing for those of us who are chronic illness caregivers. Or even people who are beginning. But it’s one thing if your person breaks their leg and you’re watching this thing. And it’s really hard to watch. There’s somebody I just met, she said My husband broke his leg, and I was his caregiver for three months, and it was hard and terrible, and she’s like, I cannot imagine 13 years.
So I think that another piece of it is, it’s hard either way, right? And for those of us in the chronic illness world it is to know that this isn’t short term, this isn’t going away. This isn’t the last even if it ebbs and flows. This isn’t the last time I’m going to be witnessing something like this.
And I think something I’m experiencing now is like being in this moment now and also like having these little flashbacks to previous moments. Even like the sights and some smells and some sounds… This is like that time that he had that, the bottles on the dresser reminding me of that surgery, you know, so like the repeat trauma for us, as the witnesses of seeing the thing and of knowing that this is not the last time that we’re gonna see the thing. It’s not just like, Okay, let’s get through this really hard three weeks, and then you’re healed, and then we’ll move on. It’s like, oh my gosh. This is our life, and this will continue to happen, you know.
Justin: Right, yeah. And I think there’s with watching our people suffer, I think there’s very much a focus on them and how they’re feeling and their pain and all of that. And that’s a huge thing. But I think we lose sight of the compounding impact that being present for all of that has had on us.I think just witnessing that for years is –I mean the compounding trauma of that. I don’t know what the fix is. Fix is the wrong word, but I think there’s things that probably you can do to help release that, or something so that it doesn’t just build up, build up, build up. Because I think then our bodies are all connected. And I imagine, you know, physically, you can start feeling different. It’s just there’s so much you’re holding right, that it, I think, is overwhelming.
Allison: Oh, for sure. Yeah, yeah, absolutely. And I think even like the seeing, just the visual of it; you know, nobody else sees our people like this. So I think it’s almost like–I don’t know if loneliness is the right word. Like yesterday, so Sean’s dad is in town, and so yesterday he came over and Sean got out of bed, you know, for the first time in a couple of days, and had like 10 minutes with his dad, but even for that, Sean totally rallied for that time. And so it’s like, we the spouses or the sort of primary frontline person see them at their very worst.
Justin: Yes, yeah.
Allison: And their most vulnerable, and more so than anyone else. So it’s also this piece that nobody else can even begin to understand, you know, because even if Sean’s dad was like, Oh, I saw Sean, and he was looking pretty rough, I would just kind of want to be like, yeah, that was him really putting on a show with those 15 minutes. You didn’t see what the impact of that 15 minutes did, right? And then how much pain and how terrible he felt after that..
So there’s also this sort of singularity of it, I mean, it’s different, maybe, if they’re in the hospital, and then there’s a team of doctors and whatever. But I think in so many of these, like in yours, so much of what happened was in your home, in your bedroom, and for us as well. And so, being the person, the single person who is witnessing these things, alone and bearing it feels like a really heavy weight.
Justin: You know, I hadn’t thought about that part of it with the loneliness of it, because, yeah, you’re right. You are. It is just you in a lot of these cases, and you’re experiencing them at their worst. And there’s in those moments, there’s no one else around to be supporting you. It feels like you were just there in it. And yeah, that feeling lonely through that, for sure. I remember that.
Allison: And so even like when you were saying earlier, it’s important that we sit in that room and we bear. witness, and we’re there with them, but also we’re talking about how hard that is, right? And so it’s like trying to find the balance between do we just sit and stare at them, even if that’s really hard for us? Do we sit in that room even though we don’t, you know, maybe need to sleep 23 hours a day? Like, maybe they do at this time, but then at this moment, these whole last few days, I help him, and then I leave the room, and then I’m well, now what do I do? You know, Sean dad’s in town, so there are all these like activities. Do I go leave the house like that? I don’t think so, right? But also, I feel like garbage from what I’ve been going through, you know? But then it feels weird to be in the other room, watching TV, and eating takeout when he’s in this other room, feeling awful, you know? Do I…you know what I mean?
It just feels like we’re impacted, but we’re not the person, and so how do we coexist in that space and time when our person is feeling so awful, but we aren’t feeling awful, but we’re feeling sort of awful… You know what I mean?
Justin: Like there’s a real tension there.
Allison: Yeah, there is.
Justin: And I think it’s really hard to do. But I think you’re right that there are times like you need to step away, because maybe there are things that need to get done, to keep things moving, to keep things going around the house, there’s things like that. And also we need to take care of ourselves so that we can continue to be there with them at their worst in these times. And I think it’s really hard to take that step away, and recover or do something that can restore us without feeling really guilty in these times.
When they’re not doing well, when they’re at their worst with all of this pain, it does feel with anything else that you’re doing, No, I should be there. I should be there with them, everything else, pulling away from that–the guilt is really there. And I think there’s a real tension there, because you can’t just sit with them 24 hours a day, right? And yet you don’t want to just leave them to it and go about life either, like that’s completely the wrong end of the spectrum, right?
And so I don’t know where the balance is, but I know that you have to. It’s one of those cases where you have to be aware of how you’re doing and if you need to kind of do something for yourself, and maybe, like you said, you’re just sitting there not doing anything 23 hours a day, while they’re in pain, or whatever it is. I would sometimes read or do something else, but still be there with her. And so that was like, Okay, I’m there with her. I’m here if she needs me, but also I have to kind of do something for myself too.
Allison: Something you want to go back to that is a sort of a new pet peeve of mine is the piece about we have to take care of ourselves so that we can take care of our person. You know, which is absolutely true, right? But also that narrative really irks me these days, because it’s like it implies that the only reason I need to take care of myself is so I can take care of Sean and not because I’m a human who’s worthy of wellness. And I know that’s not your intent. I just think that, yeah, let’s say that clearly, because I think that too often we think the only reason we should take care of ourselves is so that we can continue to be a caregiver. And it’s like, no, no. It’s because you’re a human being who deserves wellness and love and care, you know, so I just want to have you go back.
Justin: No. Thank you for saying that.
Allison: Yeah, for sure. One thing I thought of as you were talking that I didn’t even think of until just now is that I ordered takeout last night and ate that in front of Sean, which maybe was terribly insensitive, because he can’t even swallow right now. I’ve heard a lot of people whose people had head and neck cancer, who secretly ate, so I’m sure he’s probably okay with that, but I’ll have to ask him about that later. But even that kind of thing, right? Do I get to eat this chicken sandwich, or should I not? You know, if he can’t swallow right now, should I watch that show, or should I not? Should I go out with his dad, or should I not?
And so I think that’s been an interesting thing for me to juggle this weekend. Everybody is like, of course, Sean’s not gonna come hang out with us this weekend. But then I feel like, well, what, where? What’s my expectation, you know? Because technically, I’m not sick, yeah? But also I feel like I shouldn’t leave his side. And also I kind of feel like garbage, because I’m also going through it, you know. But I’m wondering if people are thinking, well, you’re fine. Why aren’t you coming? You know what I mean? Because you didn’t have surgery.
So I think there’s that piece of the reminder of even though I was not operated on, what is happening in my house, and this witnessing of my husband feeling so awful, is impacting me and my current well being. You know, the more you and I talk about this, I think people are starting to get it, so it’s probably just in my head, but I think just that piece of why do I need to go home and rest? Why do I need to take care of myself, like I didn’t have surgery? You know?
Justin: Yeah. And yeah, I can resonate with feeling that way. But also in these times, we are doing so much more.
Allison: Oh, yeah.
Justin: I mean, these are intense times. It sounds like you really have a lot going on right now with taking care of Sean. And I imagine the emotional piece of that is also just enormous. So yeah, it makes sense that this is also a time where I think okay, how can I also not disappear into this caregiving role. But also, there it does ebb and flow, so that there are times when you’re like, I’m just solely in this. I don’t know. I keep thinking about there’s the balance of this, and I think that’s something we talk about a lot, because you can’t… it feels like you said it feels wrong to be like, I’m gonna leave them home right and go do a thing, but I imagine if you asked Sean about that, he’d say, yes, you should go right?
Allison: Oh, of course, yeah, yeah.
Justin: So, yeah, I wonder if there’s something to it. Do we feel like we need to do more than they really are asking of us when they’re suffering?
Allison: Are they opening their eyes and thinking, Why isn’t my person sitting right here? Or are we just imagining that’s how they feel, if we’re not, yeah,
Justin: Right, right? And I know that there were times with Sarah where she definitely felt, I need you here with me while this is happening; that was a real for sure thing. But also she understood too that I couldn’t be there every moment of every day, and that our lives needed to continue going forward, and there were things that I had to do to do that, and I needed to also continue interacting with people outside of our house. I needed to continue maintaining friendships. I needed to continue seeing family. I couldn’t just be at home, continuing to be more isolated.
I imagine we’ll talk about support later in the episode here. But if you are continuing to become more isolated, losing out or it’s not helping, right, get the support that I think we need as much. And I think these are times too where getting some outside support can be really helpful in not feeling like we need to be doing this, but we feel like we have to be with them, and this isn’t getting done. But also, I have to cook dinner. But also, you know, do I need to sit with them so that if they need anything, I can quickly get it for them.
Allison: Sure, yeah, yeah. And I think a heightened piece of this too, is like in this moment, I also feel like I’m having to be a decision maker about all the things that we talked about, but also about do I need to be advocating more? Should I be taking him in? Should I be calling again? Is this normal? All of those pieces? And so there’s certainly seasons of more, Okay, this is just what’s happening. But then there are times, like the one I’m in right now where it’s also this decision making sort of stress, especially because he’s sick and he feels terrible, so he’s not going to be the one. He very rarely is the one to say Can you call someone? And so I feel like I need to be doing the research or managing the symptoms, or trying to decide: is this okay, that it hasn’t gotten better?
And that’s a whole exhausting layer of it, too. There’s the witnessing the hard things piece, which is awful. But then there’s also the sort of symptom watching, with part of the witnessing of like, Okay, does he look worse than he looked before? Does he look better? Or is he this? Do you know what I mean?
Justin: Yeah.
Allison: And so there’s almost like the clinical witnessing, right? That’s going on as well, and trying to decide, again, it’s not just like, Oh, he’s got the flu, and in three days it’ll be better. It’s like, Okay, wait. Are we doing enough? I’m the only one witnessing him right now, and because of that, I’m the only one making decisions about if this is okay, or if he needs more, if he needs something different, and that feels really heavy, to be the only one. I kind of want to video call his doctor and say look at him, listen to him. Is this normal?
So I think that’s another piece of this witnessing: watching them suffer, it’s not just heartbreaking because it’s our person, but it’s also like a really important, terrible role that we have around it. Does that make sense?
Justin: It does. And I mean, you right now, literally, are Sean’s voice, I mean, absolutely, you are. I imagine if you have an appointment, that you would be the one doing a lot of saying, Right, this is what’s happening. This is what he’s going through. And I remember that when Sarah was not well, and we’d have an appointment, that was one of my roles, to basically be her voice in those appointments, because she would just be laying there on the exam table, just not really able to do much. And so that’s a lot of pressure.
Allison: It is a lot of pressure.
Justin: It’s a lot of pressure to convey everything that they can’t say, to kind of reinforce the magnitude of what’s happening, so that the doctors and medical staff understand that. Yeah, that always felt like a lot of pressure for me to do that.
And I think you brought up something too. It made me think. We talk about how it’s important to be with them and bear witness to this suffering, so that they are not alone in it, so that they can feel like someone else sees that this is happening, but it also depends on the situation to a certain extent. We don’t want to just be doing that. Like you said, just watching symptoms. And, okay, what can we be doing? What do we need to ask the medical staff to try to improve the situation? We don’t want to go too far in either one.
Allison: Right, right.
Justin: But yeah, I didn’t think of that piece that there’s an extremely higher mental load of trying to be super watchful and vigilant and not missing things and trying to discover things that might be important and lead to improvement.
Allison: Yeah, right. Yeah, exactly. And I think you’re right that we could tip one way or the other, we could be so overwhelmed with my person. Look at my person, he looks terrible, right? That we’ve missed the logistics of the Oh, I didn’t notice that his face is swollen or whatever, right? But we could go the other way of being so just clinical, that we forget the humanity of it.
Justin: Right.
Allison: And I think that I have found myself in, in those moments of such a heightened, sort of nurse role, you know that it’s more I go in and I check and I’m Okay, how are the vitals and da da da. And I write down the thing, and then I’m Okay, goodbye. And I’m Oh, wait, I forgot to bethe wife.
You know, I can remember especially when I had my other job, and I had these video calls all the time, and I would run in between the video calls and say yeah, how you doing? And I remember catching myself that my feet were literally pointed towards the door, my face was pointed towards him, but my feet were pointed like I was halfway out. Do you know what I mean?
Justin: Yeah.
Allison: And I had to stop myself and be like, Allison, turn your feet. Be fully present here with him in this moment. And don’t just be here as the nurse for a minute, but also be here as a witness, as a wife, as a friend. And so I think that’s such a hard piece that we can slip into.
And I think something I would love for us to talk about on a different episode at some point, is the concept of compassion fatigue, because I think that can be legit. For you, you said years, years she was in that state, and so, you know, the first couple of days, oh, it’s so hard, as you know, and after a while, just the poignancy of it wears down.
Justin: Almost like you can start feeling numb to it, to some extent, because it’s just day in and day out, and if you look at how you’re feeling to it, like two years in versus the first month, your emotional state is very different, right? In that sense.
Allison: And part of it is probably our really smart bodies, knowing you can’t sustain this level of compassion and heartache and all of that for this long. And so it could be our bodies just being I’m just gonna numb you up a little bit, you know, because you just can’t stay on it for that long. But then also, and that’s why I want to talk about this another day, I think then that can be hard too, because then Right; it’s our person,
Justin: We feel bad. Maybe it shouldn’t, but it feels bad to say there was a numbing sensation over the years. It doesn’t sound nice to say Right, the compassion is fatiguing, that doesn’t feel right. Yeah, we should talk about that.
Allison: Yeah, we will. So I think that that’s a huge thing too. There’s this really acute moment I’m in right now that I’m hoping will wane.
Justin: I hope so too for you.
Allison: Yes, thank you.
But if it’s three weeks from now and he’s still coughing, can’t swallow, I can imagine that I’ll just be a little bit more of How you doing good, okay, right? Which is terrible. But also ,it makes me feel better, just to call it our bodies being really smart and trying to help us.
I think there’s another piece we haven’t touched on yet. And actually Maya said something about this the other day. She said that she hates all the doctors that have done things to him over the years. And so less of your situation, more of our situation, is that so many of the things that have happened to him are things we signed up for, things we paid for, you know? He feels a billion times worse today than he did a week ago before this procedure that we begged them to do on him.
Justin: Yeah, right, right.
Allison: That feels messed up. It’s not like he got hit by a car and now feels terrible, and we can be mad at that car accident. It’s Oh no, we actually asked them to do this to him. Or all the Mohs procedures, same.
Justin: It’s right. I’m thinking about the eyelid thing. He just had that horribly traumatic thing and yes, that was like, you signed up for that.
Allison: Right? So you want to be mad at the person who did this, but also you’d asked them to do it, right? And, you know, it’s for the greater good. So then that kind of messes with your head.
Justin:Yeah.
Allison: And so many things that the procedure itself causes. Like his bone marrow transplant. The bone marrow transplant literally brings you to the point of death, as close to death as they can before they give you your new cells. So he waltzed into that hospital, and except for on paper where his numbers were bad he waltzed in being healthy as can be. And two weeks later he was close to death. Because of what they did to him because of what we asked them to do. That messes with your head.
Justin: Yeah.
Allison: Or all the things that have happened to him as a result of treatments. So, you know, he had to be on steroids for a long time after his transplant. Therefore, he has avascular necrosis in both of his hips, so he needed a hip replacement, and the other one needs to be replaced. The medicine that was helping something else then caused pain. So when we talked about anger once, we talked about it’s sometimes easier when there’s a thing you can aim it at.
Justin: Mm, hmm.
Allison: And so often with a disease, where are you aiming your anger? And so with these more acute moments, like I’m in right now, it’s Am I mad at this doctor? Did he do something wrong? There’s a little bit of that; Did he mess up? Should I be going down that path? But really, it’s just, No, this is just the way that this had to happen. So my beloved husband is in so much pain and he can’t swallow because of something we asked to have happen.
Justin: Yeah, we haven’t had that experience, but yeah, I see that in your life. Yeah, wow, yeah.
Allison: So that really messes with your head. Because you can’t be Oh, that person that hit you with a car, I’m so mad at them. It’s Oh, this doctor that we just paid billions of dollars to and begged to do this earlier. We want to do this as soon as possible. So that is…I don’t know, yeah, it’s hard, it’s hard.
Justin: It’s hard, it’s really hard, when our people are suffering.
Allison: It really is. Bottom line.
Justin: I think that one of the hardest things about being a caregiver for those years when Sarah was not well, is the amount of pain she was in, the helplessness around knowing I can’t take that away. Yeah, that, I think, hands down, hardest part of it.
Allison: Yeah, yeah, I agree. This is this person that we like. It’s our person, yeah, right. It’s our favorite person in the world, and this thing is happening to them, and they are miserable, and we are the witness. We are in the front row seat for it, you know.
Justin: And we feel the pressure of needing to dig them out of it.
Allison: Yeah, and is there something that we can do? We’re always wondering, is there more? Is there something else, should I be calling somebody? Is there more research? Is there this? And with the piece of helplessness, when we realize, that nope, this is just reality.
How are we still standing? I mean, we’re sitting, but you know what I mean? Do you ever think that? Like, how?
Justin: Yeah, I don’t know. I think there is something to our bodies doing something to protect us and keep us moving forward. Whatever that is, I know for me, I don’t remember a lot of details from those years. The memories are very general, and I don’t know if that was somehow my body saying, we can’t, we can’t store every moment of this, because that’s going to be too much, but yeah, to some extent, we just have to keep going.
Allison: Yeah.
Justin: We’re not going to bail on the situation with our people, right? So the only way is forward, I guess. I don’t know.
Allison: Yeah, yeah. And I think it’s less of how do you do it, and more just wow. Wow. We’ve done a lot, and we’ve been through a lot, and we’re pretty amazing that we’re just even sort of upright and moving. Go, us and Go, all of you listening who are just one foot in front of the other, my friends, witnessing your person, whether that’s your spouse, your partner, your child, oh, that’s a special kind of terrible, your parents. All of it, it’s all its own version of terrible, right? And some of us are sandwich caregivers or whatever. And so then you have multiple layers of watching people suffer, and it’s a lot.
Justin: It’s a lot.
Allison: So supporters. What do we think about that? How can our friends and our family be with us and help us in this hard stuff.
Justin: I think one is knowing, acknowledging, seeing, letting the caregiver know that, yes, I know that you are having to be there in that suffering and see that suffering and just acknowledging that experience, acknowledging the hardship of that. I guess like we feel like we are there to bear witness to our person suffering, as a supporter, be there to bear witness to the caregiver’s suffering as well.
Allison: I love that. Yes, yes, yes, yes.
Justin: And I think just knowing that people see what you’re having to experience, that takes the edge off that loneliness, because you know that it’s not just in isolation, in this vacuum that no one sees. I think that can make a big difference.
Allison: Right.
Justin: And then I think there’s practical things to do, a lot of the things we normally talk about. Right now for you, you’ve got a lot more you’re doing from a caregiving perspective. So as a supporter, knowing those times when there’s a lot more going on, step up and ask if you can drop off a meal or whatever it is, and try to take things off their plate in those times.
Allison: For sure.
Justin: I mean, in general, be doing that, but just be aware of these, these times where things are much more intense.
Allison: Yeah, yeah. I love that piece about bearing the witness of how hard this is to be a caregiver. And I’m noticing in my followers in my community, that people are starting to say, oh my goodness, thinking of Sean and you, this must be so hard for Sean and you, and, personally, that feels great. But also people are just starting to recognize: don’t just see that post about that Sean’s in pain and talk about Sean. So thank you for also for recognizing the impact that that’s having on me. So I think that any of that, including you the caregiver. Even the way that my sister in law has handled this weekend of all these activities, and she’s tried to say, you don’t have to come to any of them, but we’re gonna try to make them possible. We’ll go to dinner that’s really close to your house, so that, if you feel more comfortable, you can sneak out and go to the dinner and come back, but no pressure. Or we can just drop this at your house if that feels good. And so some of that kind of stuff, I think can help.
I almost feel like I would feel better if Sean’s brother or my mom or somebody in the inner circle was also witnessing this. Because, then again, it’s not just me being the only one to hold it and the only one to make decisions about, do we call someone or whatever, but also to have that be shared with somebody else. I think I would, but again, I have to think about, how would he feel about that? And I don’t want it to be like a petting zoo, let’s come look at Sean, right?
Justin: Right.
Allison: But it just does feel really heavy to be the only one right now witnessing it. So yeah, to think about if there’s someone in the inner circle that could also be there and sit with him, or, like you said, if someone wants to be sat with right? Is there anyone else in your circles that you feel like you and they would feel comfortable if it’s them being there as well?
Justin: Yeah, I think that having the right person there is important. But I think having someone else who could be there, one, to have to expand the number of people that are aware of the suffering. That can be meaningful, but also to ease that guilt that we have of I’m not there with them? And instead, I’m doing the things that either are for me or, you know, we’ve got to keep the house moving, right? But to know that there’s someone else there, I think that would be huge to have that,
Allison: Yeah, I think even like a respite kind of thing, of someone saying, do you want me to just come sit in your living room so I’m close by? So that you can go take a walk, so that you can take a nap, so that you can do whatever you need to do, that kind of thing.
This is a little bit of a side note. But you keep talking about keeping the house moving, and it’s like, Darn houses. I mean, same, right? Today, Oh, the dishwasher needs to be unloaded, and the garbage and the laundry, and I’m just Ah, don’t those appliances know that I’m having a hard time?
Justin: There’s so much of the nuts and bolts of life, that don’t slow down when things get intense and hard.
Allison: Unfortunately, we keep eating and wearing clothes and making garbage.
So thank you, friend for talking through this today.
Justin: Yeah. Yeah.
Allison: I was telling you before we hit record that, if we had like a dog training podcast, I would not have been up for talking today. The fact that actually our conversation is right about exactly what I’m experiencing right now actually helps. So thank you, and thank you for letting me show up with the energy level that I am today,
Justin: No worries.
Allison: And for bearing witness to what I’m going through right now. So yeah, grateful for you and for this space.
Caregivers listening, I just have a sense that I can already feel the people nodding their heads and saying yes as they listen to this episode. I think this is going to hit home for a lot of people. So keep your eyes open for when the next support group on this topic will be. And if you are not on the email list for the support groups yet and want to be so that you can be alerted, just reach out to me at allison@thenegative space.life, and I will add you to that, or else just watch social media, and we’ll let you know when the support group is going to be. But this, I think this will be a good conversation to have with other folks as well.
All right, I hope that the next time we talk, it’s just better.
Justin: Very much hope that for you.
Allison: So much better.Yes, I hope so. Here’s to that. All right, talk to you later, friend.
Justin: Bye.
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