Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Hi, Justin, how are you?
Justin: I’m doing okay. I think I said that last time too, which has been good. I’ve been kind of reflecting this week on, like, how I feel this winter compared to, like, the last couple winters. And I’m feeling like, noticeably better than the last two winters. I’m not 100% , but yeah, that just feels good to, like, be able to obviously tell that I’m in a better place than the last couple years at this time. Because winters aren’t easy historically, with a lack of light and all of that, and just my general depression as well. So that’s been, yeah, encouraging.
Allison: Do you have any reason, like, Do you have any thoughts about why that might be?
Justin: I’ve had some medication changes, so maybe that’s playing into it. Other than that, I’m not sure. Yeah, just sometimes things ebb and flow.
Allison: Right? It’s so wise of you to kind of look back in that way, because I think so often we just are like, “Uhh. It’s hard right now.” And you could still say that, because I’m sure you’re maybe potentially, like, less happy than you are in like, say, May or June, right?
Justin: Yeah
Allison: But instead of saying like that to be like, “Oh, actually, I feel better than I did a year ago,” or whatever, like, I think that’s a really, like, wise or, you know, reflection to do. And to also, then think about, like, “Okay, what is that?” And, you know, all of that so… Nice.
Justin: And, I mean, it’s helpful, like, inevitably and hopefully not inevitably, but things very likely may swing the other way, sure, over the course of the next years. And it’s again then, like being able to look back and say, realize that things are not always this way, and have not always. That’s also important, I think, too. So hopefully that can be there if need be in the future.
Allison: You’re so wise, so wise. Well, I think also for you to not just always be like, winter is the worst. And, I’m always unhappy in winter, you know. But for you to realize there’s, like, you know, gradations of that you know, I think, is important. So yeah.
Justin: Winter, there’s, there’s some good in winter. Like, a lot of my favorite birds come down. So, like, there’s great birding in the winter around here, like, we get all these ducks and geese from the Arctic, such that come down to winter here. And so that’s it’s one of my favorite times to go out birding, even though the weather isn’t always that accommodating. But, yeah, that’s not all bad.
Allison: It’s not all bad. We still got a little bit of time left in this whole winter thing. Although, here they said, I was thinking this the other day. Side note that, like, We must be getting older, because I feel like we talk about weather a lot. But, you know, it does impact us. So it does. We are about to, like, as of today, it’s gonna be like 20, and then it’s gonna be like, in the 30s the rest of the week. Which is like 30-40, degrees warmer than it was last week. And I think they’re saying that maybe that was it, like, that’s with the cold cold. I don’t know.
Justin: Like, how do they know that when there’s months of winter to go?
Allison: Like, if that’s the case, cool, yeah, I can do 35
Justin: Yeah, great.
Allison: Although part of me because I love the higge, you know. So, so right, that sometimes I like it when it’s extreme, because then I’m like, “Well..”
Justin: Gotta stay inside to be cozy.
Allison: Inside. Must be cozy. Cannot go out there.
Justin: Gotta be the bear from the sleepy time tea.
Allison: Yes, yes, that’s basically me.
Justin: So, yeah, how, how are you? I kind of have an idea based on what I’ve gleaned from your past week.
Allison: Yeah, pretty rough, actually, yeah. So I think that, you know, maybe our conversation for today is just, you know, talking through what’s been going on for the last two weeks. Because, you know, we’ve talked on here before, about sort of the before, during and after, of like medical appointments. But I just went through a whole before, during and after of hospitalization, of Sean. And I think there’s a lot to talk about there too. So, yeah, I think before we actually dig into that, I will just say too that before the week of the hospitalization, we had a really crazy week that would have been enough to, like, knock me flat. And did, actually. So like, the week before, he had a day on Tuesday where he had like, eight hours of Mohs procedures, and it was just terrible. And then on the Thursday of that same week, he had another one of his esophageal dilations, which went super well. But it was like, be at the hospital at 5:30 in the morning and, you know, all of that. So by Saturday of that last week, like a week ago, I was like, toast. I was just like, to a crisp. I was like, this is, you know, because I sort of had come down from the terrible of those two days. And I was like, I was texting with my mom. I was like, “Mom, I’m so burnt out, so burnout.” She said, “You know, you could just rest” and, you know, all the things.
Allison: So that was Saturday night a week ago, and then in the middle of the night, and this is like, I think caregivers will get this, like I could just sense that something was up. Push on. He wasn’t, like, you know, he did actually get up. He’s so tiny, he always wears like, a bunch of pants, like layers and pants. He got up in the middle of the night to, like, put on extra pants. But I didn’t really think anything of it, because it was like, five below or something. But then I could sense he was just kind of, like, making a weird noise. And I was like, “Are you okay?” He’s like, “I don’t know. My throat kind of feels weird.” And then I tried to feel his forehead, but, you know, he has all these layers on. And so I was like, just for fun, yeah, I’m gonna take your temperature. And this is like, 2:30 in the morning. Classic, right, classic, middle of the night. And keep in mind, this is like, what, five hours after I had just said, “I am burnt to a crisp. I am toast. I’m done.” 2:30 in the morning. I was like, just for fun, we’re gonna take your temperature. And it was 101.6. So, like, back in the day when he had the bone marrow transplant, like, 100.5 was, like, the magic number. Over that you got to go to the ER, but we’ve like, been out of that zone for a while. So I was like, “Okay, we’re just, we’re not gonna, like, rush it.” But so here we are in the middle of the night. He had just had these four skin procedures, thinking, “Are they infected?” So it’s 2:30 in the morning, and I’m redoing all of his bandages, trying to look at them, to figure out, are they infected, trying to feel them, to feel if they’re hot. Of course they’re hot because he’s hot. Giving him Tylenol. Then just trying to make the decision about, like, do we go to the ER? Do we call someone? Do we go back to bed? You know, all of that stuff. And so in that moment, he took the Tylenol, and he’s like, “let’s just go back to sleep. And we’ll just see what happens.” So we did.
Allison: And then when he woke up in the morning, he was like, “Oh, the fever broke.” And I was like, “Okay, good. Cool, little blip. Dodged that, back to rest, back to rest.” But then a few hours later, the fever came back. So then it turns into he doesn’t feel well. And he’s also not going to be the proactive one to be like, “Let’s call the people.” So then it feels very much on me, right? It’s my job to figure out, “Who do we call and what do we ask?” So I’m fortunate that I have a good friend who is a nurse who was just like, always on call for me. That’s great. So I text her, I was like, here’s what we’re dealing with. You know, he had two different procedures. Now he has a high fever. What do you think? So then she was able to say, “Okay, that fever is too high for, like, a derm infectionn probably>” Okay, which is helpful. But then she was like, “What other tools do you have in your house?” So, of course, we’ve got them all right. Caregivers, you get this, so I get out the blood pressure cuff. And then we have a pulse oximeter. So I’m just like, gathering all the data and taking pictures of the numbers, and sending the numbers to her. Then she was like, “his heart rate’s really high,” and doing all these things, and then trying to decide who do we call and do we because, of course, it’s Sunday. So there’s also that, and it’s the day before MLK, which I was like, “I don’t know if that’s going to impact things. If that means things aren’t going to be open tomorrow, or whatever.” So called, like the hospital number, and then the hospital transit, I would like the fellow on call or whoever. And then, you know, they’re like, Okay, if it’s been 20 minutes and they haven’t called you back, then call us back. So of course, this was 20 minutes, and then I have to call back. Then I did it again. And then, you know, and it’s just at least waiting. And of course, in the meantime, I’m looking around the house thinking, “Okay, we’re probably about to go to the hospital. What do we need to do?” Which me what should happen, that Winston should just, like, throw up everywhere. That’s totally what should happen in that moment. I was like, “He never throws up.” And I’m like, “What is happening?” So, Winston throws up everywhere. Oh my gosh. So then I just sort of trying to, like, you know, like, “Do I pack a bag? Am I wasting time? Should we just get in the car? Should we…” You know, all the things. And a friend very sweetly, brought us food and flowers and all the stuff. So, like, putting, like, flowers on a vase. And I’m like, “Oh my gosh, like, what is all this?” So I got, finally, the fellow called, and then I started sort of saying, here’s the things. And like, you know, 15 seconds, and he’s like, “You got to go to the ER.” So then, like, I have to go tell Sean. Like, we’re going to need to. And he’s like, “No,.” I mean, he knows we need to, but, yeah, that’s the last place, right?
Allison: So anyway, I’m just rambling over here, so I’m gonna pause, yeah, and ask do you have any follow up questions or any comments so far?
Justin: Yeah, this is, I mean, I appreciate having this conversation, because the ER is not, well, there have been several times I’ve had to take Sarah to the ER. Like it hasn’t – I feel like it’s probably you have more experience there than we do.
Allison: I’m glad for you that that was the case.
Justin: And I’m sorry that it’s how it is. But the few times, like, yeah, I can empathize with that. Like, do we go in or do we not? How do we make that decision feeling so much pressure as the caregiver that you ultimately are trying to make this call and like, you don’t want to seem like you’re overreacting. You don’t want to turn it into this whole thing when it just, they send you back home. You know, it’s rest or whatever. So yeah, that’s, I can see how just this far into your week, like, yeah, it’s, it’s a lot to be dealing with.
Allison: Well, the ER is, like, the worst place. And then, you know, like, are you gonna get other bugs while you’re sitting?
Justin: Yeah, right.
Allison: Are you gonna be there for a billion hours, and are you waiting? And, you know, and it’s like, so terrible, and especially if you don’t feel well. And then you’re like, in the lobby. And so it’s like, “ah.” Like, you don’t want to have to go. We also don’t want to be dumb and not go right. And he’s very rare, like, very rarely in his 12 years of sickness, has he said, I need to go right. You know, he’s much more one to be like, “I’m fine.” I just really would rather stay here, you know, yeah, and so then it really feels like it’s on me, and that feels like that’s a lot of pressure, you know. So of course, when the fellow says, go like, that helps in a way.
Justin: Yeah, for sure.
Allison: But even the Like, who do I call and should I call? And you know what? I mean, all of that is a lot.
Justin: So you make the decision we’re going. Do you have, I mean, you’ve had to do this a number of times, and you don’t necessarily know how long you’re going to be there. Is this going to turn into a hospital stay? Do you have a sense, like, Do you have a bag that you grab? Do you have, how do you prepare, not knowing, like, what this is going to turn into?
Allison: Totally, yeah, you know. So a little backstory is that, like, five years ago now, this happened all the time that he would get, like, all of a sudden, big fever, and we would have to go to the ER. And then it was turning out that it was like a UTI, because he has a urostomy pouch, because he has no bladder, so he doesn’t know that he has a UTI. And so then we would go, and then they would eventually -And so this is a caregiver tip, if a person is considered septic: if they have two of the three of either, like, their blood pressure, their heart rate, or their temperature are high or low, like, are off. And so, and that just means, like, there’s an infection that’s like, going through your body, and this is a big deal. This used to happen a lot, and we used to have to have to go to the ER all the time, and then they put him on this rotation of antibiotics. The infectious disease department, like, the head of the department, spent like a day basically trying to figure out, like, how to crack this, right? Came up with, like, a rotation of antibiotics for him that he’s been on ever since.
Justin: Oh, wow.
Allison: And so we have not been to the ER in this way since then, but it used to be something we did a lot. So, we have not, I do not have a go bag. Because it’s been a long time. But there are these things, like, because he has a urostomy, if he ends up staying overnight, they hook it up to, like a Foley bag. And so there’s this little, like, connector, okay, that they can never find. And it’s always like, “I don’t know what floor would that be on, and how can we find it,” and all the things. And so that’s the always the thing that like for a long time I carried one of those in my purse.And now on this day, I just said, “All right, I’m gonna put one of those connectors in my purse, because that’s what we’re gonna need.”And so I threw that in there, phone chargers, meal bars, earbuds. I didn’t bring clothes for him, which I wish I had, because I sort of felt like that was like tipping the scale. That was sort of like saying he was gonna stay.
Justin: Yeah. I get that, yeah.
Allison: So I didn’t bring clothes, although I should have, and a water bottle. Those are kind of the big things that I just sort of threw in the bag. And it’s like, “Okay, off we go.” But here’s the other thing, we have a child, right? And so then also thinking about that, and thinking about our little was it our last or a couple of episodes ago with the psychologist who talked about the impact this has on all new members, right? So then I have to say, “Okay, so here’s the deal. We’re going to the ER.” And even when the dog threw up, I was like, “I could really use some help.” But I didn’t want to, like, freak her out too much and be like, “I’m freaking out. I need your help.” So I just was like, “hey, Winston just threw up, and I’m dealing with a couple things. Could you just take care of that?” And then, so I tried to be super chill and just be like, “Here’s the deal. He’s got a fever. We’re going in. I don’t know when we’ll be back. Call me.” You know what I mean. But that’s a whole extra layer. It’s like, kind of wanting to panic and wanting her help, but then not wanting her to see me panic. And then, you know, even wanting to call, like, call my mom and be like, “Mom, come over here.” But then be like, if Maya sees and my mom shows up at the door, she’s gonna be like, “Whoa.” So all of those things are playing in my mind as well as I’m trying to get us out the door.
Justin: So you get there.
Allison: So we get there, and also, like we get there to this place where we have so many memories, right? A good thing is that the ER has been remodeled in the last few years which is amazing. Because I can imagine really terrible, traumatic experience in the ER at one point. And it doesn’t look like that anymore. So that feels great. So we have been to this ER but,still. So just like, pulling up to the place, I’m like, Oh yeah, you know. But we walked, I walked straight up to the front desk. I said, “I have a cancer patient with a high fever and a high heart rate.” And she was like, “Okay. “And then boom, and we went. So we went.
Justin: Is that that seems like a Caregiver Tip kind of thing? How did you learn to, like, the magic words?
Allison: Well, I think, and sometimes it works and sometimes it doesn’t. But I think that especially because what they heard in that sentence, was sepsis. When I said high heart rate and high temperature, that’s what they hear. And that sepsis can go bad real fast. And so I think that it was those keywords. I think if I had been like, “my husband has cancer.” which is also kind of confusing. Because if they were like, “What kind of cancer?” I don’t even know how I would have answered that question. “All of them.” I don’t know, because he’s not like, in active treatment. But I think if I had been like, “My husband has cancer and he just isn’t feeling so well,” they would have been “Like, cool, have a seat.” Or if I just said, like, “He has a fever.” So I think it was the combination of those things – of knowing to say that. I think if you say anything, hopefully, about like, if your person has a compromised immune system, you really should not be sitting in that lobby. I think typically, like, if you say something like chest pain, shortness of breath, they’re supposed to – or any kind of stroke – I’m not telling you anybody to lie. So the things I think that sort of fast track you. It’s hard to know if that’s exactly why, or if this would have happened anyway. But like, we went and I didn’t even sit down. We went into triage and immediately into a room. And then they just like, boom, boom, boom. Started checking all the things. But then a strange thing from like, sort of a equity perspective, is like, then watching other people end up on gurneys in the hallway and be like, “Wait, why are we in here?” And he’s…I’m glad, right? But like, they’re in a gurney in the hall.
Allison: And then just the trauma of that, of like, it’s like being in the middle of an ER episode, like a “Grey’s Anatomy” episode. As you could hear everything, like you could hear the ambulance bring in this person, and then be like, “Okay, ma’am, what happened?” And she’s like, “I don’t remember.” It’s like, oh my gosh, I can’t be absorbing all of these traumas, of all the people who are coming in here. And then I almost felt kind of guilty that we were in this, like, lovely little, I mean, not lovely, but like, we had our own room. They immediately just like, boom, boom, boom, boom. Like, started doing all the tests to check for all the things. At one point, a nurse was like, “Tell me the rest about the rest about the rest of your medical history that’s like, (laughs). So we did just sort of say, “Well, this, and then this.” I mean, because it’s all in the same, it’s in the chart. But like, nobody can read that whole chart. And then I just start, like, listing things. And she just like, “I’m sorry.” I’m like, well, “Thank you,” Question mark?
Allison: I don’t know, you know, so I think that’s another piece for caregivers is like, in that moment, like we are the medical history. He’s feeling lousy. It’s hard for him just to stand up or to speak up and to say this happened and this happened and this happened. And this happened. And you should know that I have a g-tube, that I have a metal hip, that I have…you know what I mean? So I think that’s such a huge part of the caregiver role in that moment is like the medical history. But also, like the comfort thing. I’m the one that’s like, “Do you have warm blanket?” Like, “He looks a little paler than he did five minutes ago.” “It’s been 10 minutes, and you said you were gonna this…” you know what I mean? Like, that advocacy role. So, like, as we’re there, we have this big job to do. We’re on alert. Like, at one point a doctor came in and she was like, well, we looked at your urine, and it actually looks great. And I was like, oh, okay, it’s interesting, but, yeah, surprising. But okay. And then a little bit later, I saw the nurse, like, collecting the urine sample. And I was like, “Wait a minute. Hold on, that doctor said the urine looked great, but you haven’t given her any yet, right? What is that? That’s sus, as the kids say. So it’s just that advocacy, like being on alert. Are they doing their job? Are they saying all the things is he doing? Are they seeing?
Justin: I just wanted to back up to you were talking about the medical history stuff and having to be that record. I think that that could be a great opportunity as a caregiver, to, like, document that once. And if you do have a bag or a thing that you grab when you go, and this applies to new appointments with new providers as well. I mean, yes, maybe you can just hand it to them, but so that you don’t feel like you have to store all that in your brain. That you have a checklist to go through so you don’t miss something just as a takeaway. I can see that being..
Allison: You had that. Didn’t you have that for a while?
Justin: We had that for a while. We put together a binder when we were trying to figure out what was going on with Sarah. And we had tons of stuff in there. And we had, like, her whole- because this kind of started off, she had, like, with the migraine that just was went on forever and ever and ever. And she was going through all kinds of drugs for that, medications. A lot of those are, like, weird off label uses, and so we were trying, we had, like, all of that documented so we knew what she had tried, why it didn’t work, and, like, all the different people she had seen. And so, yeah, we would take this binder with us to appointments. And that way we could, you know, have you been on this? Well, I don’t remember it.
Allison: Or what year did we do that? I don’t know exactly. How many things I’ve been through since then? I don’t know what year it was. And also, because you have to repeat yourself so many times. So if you give the whole history, and then 15 minutes later, in walks a different doctor who says, “So what brought you in today?”
Justin: Yeah, right.
Allison: So that’s a really smart idea, because it also makes me think of.. You know, I remember like five minutes into COVID. It was like March 19 or something, and, um, and Sean had to go the ER. And I it was one of those. We were so new into COVID that I remember driving him and saying, are they gonna let me in? And he said, “You need to be prepared that they won’t.” And I was like, “They have to let me in.” So I was just ready to, like, bulldoze my way in, you know. And then we pulled up to the ER, and they, like, came out, in like hazmat suits. And have any of us processed this, like, dystopian world that we have gone through? No. I don’t think okay. Anyway, they came out in hazmat suits, and they were like, “Okay, well, you can drop them off.” I was like, “Because the sign said no visitors?” And I said, “I’m not a visitor. I am his wife.” And they’re like, “I’m sorry. We don’t have, I can’t have any visitors right now.” And so fortunately for us, I mean, he had, like, some kind of infection at that point. He was lucid. He was conscious. He could say those things like his medical history. But I think about my friend who three days later, at the same ER, her husband had a stroke, and she had to drop him off and drive away. So you could just think about, like, that little sheet for those guys who have these complex complicated histories of like. If I ever, if that happened, and I had to, like, send him in. Because even if he’s is conscious and lucid, he’s not in his best space, right headspace to be able to remember all these things. So, so I think having a sheet like that, or a binder or whatever, or a top – if you only know five things about him. Here’s what you should know. Yeah. I even think one of his recent procedures I saw on the screen is like a little, like trace of a body. Oh, yeah. And then it had these little pictures. And I was like, “Is that a picture that shows, like, all the things that have happened?” And because I was like, “That would be brilliant.” People are always like, so when you, How frequently do you urinate? I’m like, “He doesn’t have a bladder Clearly, you didn’t read the chart.” And so, like, and so they were, it looks like they’re starting something like that. But I think even something like that, a picture of the body that says, like, metal hip here, ostomy here, G tube here, tongue thing here. You know what I mean? Just so that, at a glance, they can see that. Because I know they can’t read the whole chart, but still, you know. So anyway, I think that would be something like that would be good for a lot of different situations. Or if they’re traveling or, you know, whatever, like, so, yeah, good tip.
Justin: Okay, so you’re in the ER, and, I mean, not to spoil where this is going, but there comes a time where it’s clear that he’s going to stay at the hospital. Like, how does that transition happen? What do you go through at that point? What does that feel like?
Allison: So that was interesting, because we hadn’t seen anybody for a while, and this doctor walked in the door. But like, didn’t – I keep thinking about this moment – he didn’t even, like, really walk in the door. He literally had one foot in the room, one foot. And I don’t know if that’s because he was supposed to, like, technically, gown up and didn’t do or whatever. But like, he just stuck his head in and said, “Hey, I know you’ve been asking if you can have food and water, and the answer is no, because tomorrow morning they might want to do a procedure.” And I was like, “So what you’re telling me is that he’s staying the night.” And he was like, “Oh, well, no one’s told you that yet.” So that’s how we found out,
Justin: Great. That’s lovely.
Allison: And in retrospect, I keep wanting to be like, I should have just said, “Could you walk in this room? Could you just take a step?” Because he was, like, the first doctor we had seen in like, a while. And so I was trying to, like, pepper him with all my questions. But he was literally halfway out the door. You know what I mean? And it just felt so like, disrespectful and dismissive that you could tell he was like, “Oh, but I should be doing this other thing.” I just want to be like, just, “Can you just, like, put both feet in our room for a second, because it’s big news that you just told us that A) he’s spending the night, and B) he might need a procedure tomorrow.” Like, what!?
Allison: And so it’s so hard when these, there’s these, like, people who know this information about you and your person, and you don’t know it. I think a thing that is a newer thing that is happening is that most of the information we got, is that I would get a MyChart alert. So it’d be sitting there, and it would be like, “Your test results in.” So I would log in on MyChart and be like, “Oh, your CT scan was clear. Oh, your chest X ray was clear.” Nobody would come and tell us that. I would see it on my phone.
Justin: That is wild.
Allison: And fortunately, I have enough medical, you know, prowess and background, that I could read it and be like, I know what this means. Or this number is high, but it’s usually high. But like, that’s how we were finding stuff out, which I mean, in a way, I’m glad, because we were getting it right away. But also it’s like, “What!? What about the people who are just like, stumbling into the ER, and they don’t have my chart set up?” So that’s how we found out he was staying over
Justin: Oof.
Allison: So I was like, “You’re like, admitting him?” And then he was like, “Well, yeah, but we probably don’t have a bed, so probably just gonna, like, observe him and, you know…” And it’s like, “What? What is happening?” So, I mean, a good thing is that he didn’t feel terrible. So once he got there and got fluids and started getting some IV antibiotics, he started feeling better. So that was a very different piece of this that could have been if he had been miserable, it would have been different. But I think just the fact that he was like, mostly just chilling and was fine helped a lot. And still it was terrible because then at one point I was like, “Okay, well, now I have to tell Maya that we’re not coming, that he’s not coming home. Now I have to decide, how long do I stay? Do I stay overnight? Do I go home? Do I – you gonna be okay? Do I go home to be with her? Do I stay with him?” You know all of those pieces which… so then, spoiler alert, he ended up staying, let’s see, Sunday, Monday, Tuesday. Three nights.
Justin: Oh, wow.
Allison: Two of which were still in the ER. The final night he finally got him into a regular room.
Justin: Wow.
Allison: Yeah, yeah. So even at one point they were like, Oh, you’re still on a gurney. Do you want, like, a regular bed?
Allison: Yes. But I think a thing that they- somebody realized at one point is communicated is that the ER is not set up for that. They’re set up for triage. And they’re not set up for like.. At one point, someone’s like, “Would you like a toothbrush?” You know, like on a regular floor, they would have been like, “You’re staying here’s a toothbrush and a washcloth.”
Justin: Yes. With them being set up for triage like that, if Sean is mostly like, feeling okay, he’s not on their priority.
Allison: Exactly, yeah, right. Which then there’s that too that I’m like, “Great. Also, can we just go?” We kept thinking that too. Like, do we because, mostly so after a while, they were like, “Okay, that’s some kind of infection. We just have to wait for it to grow in the petri dish.” Like, why do we have to sit here while it grows? And then they were like, “Well, we have to every six hours, he needs IV antibiotics.” So we basically sat there so that every six hours, you get this, like, 20 minute dose, you know?
Allison: So I think I want to talk for a second about the decision about staying versus going. Like me staying versus going, because I think that that is something that I talk to caregivers about a lot. And like, I spoke to a caregiver, because this started happening to people who were listening to the podcast were messaging me and being like, “I’m in the hospital too.”
Allison: And so I met, like, a podcast fan who was in the hospital. I mean, her husband was in the hospital, and she had slept there every night for two weeks.
Justin: Oh, wow.
Allison: Like, I think she had a cot, maybe, or maybe, like a recliner. And so that’s a huge thing, right? It’s like, Sean was like, “I feel fine. It’s totally fine. I’m just gonna sleep anyway. Just go.” Which is great, you know, but not everyone, you know, especially if people are not feeling well, or if they’re really anxious, or if they’re really sick. But I think what’s so hard, especially when there’s another person at home, or people at home. So for me, it helped me make the decision, because I knew, “Okay, Maya is at home. It will help her to see my face. I’m gonna go home.” But still, it feels like either way, it feels like you lose. So caregivers, I just want to say, as you’re listening, that I think this is a hard, a hard one. But I think to know, of course your person wants you there with them. Of course they do. And I think this is one of those, like, I don’t know, sprint versus marathon. I don’t know, if your person had a ruptured appendix, and then it was going to be this one night, two night thing, and then you were gonna go home, and they were gonna be fine for the rest of their lives. Cool, stay in the hospital with them, right? This is a little blip, fine. But for those of us who are, like, in it for the long haul, and like I said, I was depleted going into this situation, that we have to be careful because this is a long term thing. And if we end up like this friend, if she ends up staying there, and she’s staying there for two weeks now. Now we’re probably on three weeks. And so just to think about, just even get outside of the walls of that place, and to every once in a while I would just have to step out of that room and just walk. Which was hard because it was like 10 below, so I couldn’t walk outside. So I was trying to walk the hospital, but then that’s depressing.
Justin: Yeah, that is.
Allison: But even just like seeing the sunshine because the ER room didn’t have a window and walking, moving. Yeah, all of those things. And so just driving away from it was a good thing. And just being at home and being in a different space and all of that was a good thing. And so I know caregivers, it’s a hard thing to leave your person. And if they feel really like they don’t want to be there alone, can you think about every once in a while, at least, can someone else – can a friend and a family member stay just because it’s, you got to get out of there sometimes. Which I know feels hard.
Allison: So we eventually got home. I think one thing I will say too is that, yes, that did happen that a couple of times people from the podcast or friends, because I know a lot of people who are sick. So that was a thing that I was seeing other people who are caregivers, who are patients. I would be like, “I need a break from this room.” So I would go visit this other friend of mine who’s in the hospital right now. The hospital right now.
Justin: Oh, wow, yeah.
Allison: But then that was hard as well.
Justin: Yeah, for sure.
Allison: It wasn’t really a break, you know. And so anyway, eventually we got to come home after,I don’t know, three and a half days. And so now we are kind of in the after time. And so something that I want to say clear is that for a lot of times, when people get discharged from the hospital, the work for the caregiver begins then. I mean, not that it hasn’t begun before, but it’s like, “Yay, they’re going home!” And often then, like, the care that all of that whole team of nursing people has been doing false on the caregiver. And so I want to say that really loudly for the supporters who are listening, that it’s easy to be like, “Yay, they’re home.” This is when the caregiver, I mean, the caregiver all always needs you. They really need you now, because now they’re the ones waking up on the whatever hour to check the thing. They’re the ones giving the IV. They’re the ones doing all the things. They’re the ones doing the med management. And so you can feel like, “Oh, they’re they’re fine, they’re back home.” But for the caregiver, often, that’s a harder stage. Actually, in some ways, you’ve got the comforts of home, but you’ve got more to do.
Justin: You got a lot more responsibility. And you’re exhausted from the hospital.
Allison: Yeah. And then also, like, in our case, they’re like, We would like you to schedule a follow up with the infectious disease department. I’m like “I dont want to!” So we are now in the after times.
Justin: Okay.
Allison: Let’s see today is Sunday, and that was Wednesday. So it’s just, and again, I think we’re fortunate that he feels pretty fine, like the antibiotics are doing their job, and so there has not been a lot of extra, like aftercare for me. I think it did sort of awaken in me this, because we hadn’t done this whole ER thing in a long time, this whole like, “Oh yeah, that, Oh yeah. That’s a monster that’s like around any corner.” You know, I kept thinking yesterday, even right now, “A week ago, at this moment, I didn’t know that was gonna happen.” And so that just feels a little traumatizing. Of like, oh crap, yeah. I know you never know what’s gonna happen, which I knew, but because we had fortunately been out of that, that like cycle for a while.
Justin: It’s like fresh fuel for your anxiety.
Allison: Didn’t need that. It was already fueled up enough, yeah. So that just feels a little like another thing to be like, “Oh yeah, that’s a thing that can happen at any point and just derail everything.” You know, I think I’m also, yeah, go ahead.
Justin: I was just gonna say, You must be exhausted. that’s to go through that ER stay, and just the lack of – because I imagine you come home from being there, and I mean, nominally, you can rest, but your brain is still over there, your adrenaline is probably still going, like you’re getting some amount of rest, but it’s not like you’re not recovering. You’re still in it. And so I can imagine that. And thankfully, because you don’t have a lot of additional like stuff to be doing now that you’re back home, and Sean’s back home from the from the hospital, I can imagine the crash could be pretty intense from that. And so I guess, how do you manage? How have you been managing that alongside, because you also can’t just drop everything and just lay on the couch and rest and take take off from everything.
Allison: I did, like, clear my whole week this was happening. I was like, first I was like, “I’ll clear a day.” And then I was like, ‘ll clear two days.” And I was like, “Nope, nope, the whole week.” And I’m very – I want to say loud and clear – I know I’m very fortunate that I can do that right, being my own boss, and that I’m in the caregiver space, and so they get it. So I cleared the whole week, which was great. One thing I wanted to go back a minute and say is that I start, because at first I was on adrenaline in the ER situation. But then one of those days, especially, because they kept saying, “Well, he’ll go home tomorrow,” and “he’ll go home tomorrow.” “Yeah, he’ll go home tomorrow.” And so one of those days, I was crashing there, and I was like, “I just can’t. I cannot. I cannot be in this space anymore.” And fortunately, he was like, “Go home. Just go home. It’s fine.” And I thought I was going to go home and be able to go back and pick him up and take him home. I was I can just do that. But then he called and was like,”Um, I have to stay another night.” And then I was like, “Okay, I’ll come back and visit you again tonight.” And then I was like, “I cannot. I cannot.” And so again, this was this really hard thing. It wasn’t just going home to sleep. It was the middle of the day. And so I felt like I should be there. But I was so done. I was just done, you know, at my core. And so again, fortunately, he’s like, he was like, “No, it’s fine.” He’s like, “I’m just sitting here. I’m fine. You just, you stay home.” But, I mean, that was a hard decision. I even thought, like, “What will people think that I’m not there?” And yeah, yada yada. But I just needed it.
Allison: So in the days since, like total exhaustion I have found yesterday, I kind of even found I was almost like shaky, because, the adrenaline came down, and then it was sort of that, “what just happened?” kind of thing that was happening. And it is hard because, even though, technically, in a lot of ways, I can just lie on the couch, that feels, that’s not who I am. So it’s hard for me to be like, “How much can I just lie here?” And then also, so I’m just trying to find all the ways to be so kind to myself and how what does my nervous system need. And so it’s like, I’ve been using my the heated blanket, and I found this meditation that I really like that walks through. It’s Yoga Nidra, so walks through every body part, and you relax every body part at a time. And not pushing myself, and drinking all the water and just trying to do the things to recover. But I think now it also is this, it’s this pressure of I want to recover, but also I need to recover, because is it gonna happen again tomorrow? You know what I mean? Like, now I’m sort of in that mind, yeah, which is hard, because am I catastrophizing, maybe, but also there’s data to show.
Justin: Yeah, right.
Allison: So this week, I’m kind of slowly getting back into things, and we’ll kind of see. Sometimes that helps, but I think I need to remember that even though he’s like, up and around and moving fine, we just went through a really big thing,
Justin: Right. Continue to be gentle with yourself in the next week.
Allison: Yes, yes, yeah, for sure.
Justin: So another piece of this, I imagine, is hopefully you received support during this period of time. And so I’m curious, is there any specific ways that you were supported that would be good to share so that our listeners who are supporting caregivers in their lives have some ideas or kind of know a little better, what would you good in a time like this? Yeah,
Allison: I’m so fortunate. Part of my gig is teaching people how to support caregivers. So then I benefit from that, which is amazing. So I think the whole range of a Caribou Coffee gift card or a DoorDash gift card to supportive texts you send so beautifully, you know that acknowledge “you’ve been going through this for a number of days. I’m sure you’re tired.” or “I’m here with you. No need to respond.” Beautiful, like with the no need to respond thing. I had one friend who gave a little laundry list of ideas, which I loved. He was like, “Can I bring you some food? Can I run to the store? Can I do some things around your house? Can I walk your dog? Is there or is there something else?” And I was like, “If you could go into my house right now, I would love that. And I will tell you a couple of things.” And so he was like, “Great.” And I was like, “Fill up the dog food thing. Do this, dude.” And he just came over, did those things and left. And it was great. What else – food. People have dropped off food or flowers.
Allison: One thing I did realize is that even for Maya, that she saw this soup and flowers coming in the door. And was like, “How serious is this?” And I was like, “We just have a really supportive community, and so that’s why this is happening. But like, it doesn’t, it’s not as dire as it looks by the flowers that are coming in.” So my mom went to the CVS run for me, and then she was like, “Watever you just call, I will be there. You just call.” And it was just so sincere that I was like, “Okay, yes, okay, if I need something.” And so, like, those kinds of things are just the stuff of the getting, getting the stuff done. I think a piece of it is, too, is remembering, even the piece about, someone who had emailed me and said, “Hey, can you help me with this thing?” And then saw that what we were going through. And then email through, and then emailed again and said, “Just kidding. Like, that email, no worries.” You know, I think because I’m in such a helping role and in I think that some people then recognizing like, “Hey, I’m in a helping, I maybe don’t have capacity for that right now. I even, I’m proud of myself that someone texted me at one point and said, “I’m about to go have coffee with a friend of mine who’s a caregiver. Can you give me some tips?” And typically, I would be like, “Oh, I’m so glad to do this.” But I said, “I’m so sorry. I don’t have capacity for this right now.” But it’s a person who I know has listened to the like every episode of the podcast. I was like, “You know what to do. Listen, don’t Bright Side. Say this is hard.” So I was proud of myself for setting up that boundary. Because I think that’s something that’s been really hard – is that I’m such a helper, that even in these moments, I want to help, but I really sort of need to not which feels hard. But I think I just need to
Justin: Is there anything else from this experience that you think would be good for our listeners to hear, or that you want to say?
Allison: I think sort of the overall is I think just the piece about you don’t realize how you might think that you’re just like sitting there and that it’s all I’m doing is sitting by the bedside. But that then for supporters to hear this as well that we are on, that we are watching the patient for symptoms. We are listening for everything. We are advocating that all of these things, and that there’s so much energy that goes into that, the role that we play when we’re sitting there in the hospital and then absorbing the energy of the hospital and the ER and the noises is so much as well. Just not underestimating that and the toll that that can take is big. So to sort of give yourself that. You’re tired. It looks like you’re just sitting there on high alert, and you’re doing all these different things even though you’re sitting there.
Justin: That makes me think of the last time that Sarah was in the hospital. It was a couple years ago or a year ago, I don’t remember exactly, and we talked about it on an episode, but because of COVID, I couldn’t go. I mean, I
Allison: You were in the car, weren’t you?
Justin: They let me stay through triage so I could convey as much information that I could at that point. But yeah, then I went to the car, and until like midnight or later or something. I think Sarah called me and it’s like, “I’m gonna be staying.” And so I was like, “Okay, I’m gonna, yeah, go home.” But hearing you talk about all the stuff you’re doing when you’re sitting there and that she didn’t have that. It must have been a much more stress, how much more stressful it was for her right to not have the person that’s has been there with her through these medical appointments that she can lean on to knowthe thing.
Allison: There’s this really powerful piece of art that a friend of mine drew for me after that COVID time when I had to drop Sean off at the ER. And it’s a picture of him being taken off on the gurney, and me at the door of the ER outside and I have this bag over my shoulder. On the bag it says, “Advocacy, Comfort, Knowledge of pain levels.” like all of that.Essentially all of that we carry as caregivers that was outside. And you think about how much harder that was on patients, but then also on the staff during all that time that they had to try to figure all that out. And so it just shows what an essential role we play right in those moments for our person and for the staff. And why we’re so tired, and why we need support and to be seen. So all of that is so hard and so big, and we’re still not really seen and respected and cared for. It would be interesting if you asked her about that, how that might have felt differently, because I guess that you are often her voice in those situations when she’s not feeling well. Thank you for the therapy session.
Justin: Oh, you’re welcome.
Allison: To sort of process good all of this. And I hope that I’m sure that I would imagine a lot of our listeners are just like nodding as they’re listening. And I wish that they weren’t. So again, listeners, you can think about if you have to do hospitalizations a lot, or even not a lot. You could send this to your people and just say, “Hey, this is what it’s like.” And I would imagine the people who are taking care of littles, if you’re it’s, your kid in the hospital, it’s like a whole different thing, right? So, you know, Sean’s a very compliant patient. But if the person had dementia or if the person was a child like that, I can imagine, this is a whole different thing. So, potentially you sent this to the people in your community to say “Here’s what it feels like.” or “Here are components of what it feels like in the hospital.” So I hope that the next time we talk and you say, “How you doing,?” I can just say, “Boring. Well rested and boring.” That’s what I hope for the next of my life.
Justin: Fingers crossed.
Allison: Did I just jinx it? I don’t know.
Justin: No, you didn’t, not at all.
Allison: Always good to talk to you, friend. Thanks for listening and thanks for sharing and all that you provided. All right, we’ll see you soon.
Allison: Okay, sounds good. Bye.
Justin: Bye.