Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Hey, good morning.
Justin: Good morning.
Allison: How are you?
Justin: Yeah, it’s been a week.
Allison: Yeah. I feel like you’re not the first person I’ve heard who has said that response. Tell me, what’s going on?
Justin: Well, Sarah’s not been having a great week. Her sleep’s still been really rough. She’s sleeping most of the day. She’s been up most of the night. Her migraines been real bad, and just in general feeling really fatigued. And so, the added, you know, stress of that, and, you know, work’s been a bit stressful this week, and more meetings than normal.
Justin: And then, it’s also, it feels like it’s at a point in this, everybody’s staying home, that it’s kind of, just the monotony of it is just kind of wearing.
Allison: Yeah.
Justin: Everything is just kind of running together, and it’s, yeah, getting a little difficult.
Allison: Yeah, for sure. What’s that like for you? Because, I mean, so many people are talking these days about like being isolated, but it sounds like even within your isolation, like if you and Sarah have such opposite sleep schedules, like it sounds like it could potentially be even more isolating.
Justin: Yeah, for sure. Yeah, so there’s a lot of time where, you know, I’m up and she’s asleep, and that, you know, there were years where that was the case. So it’s not a new thing, but that doesn’t mean it’s an easy thing.
Justin: Like a lot of times, especially on like the weekends, where it happens more because she’s just in general sleeping later, if I can start the day and kind of have a list of things that I’m doing, work through those, kind of stay busy, things go pretty good. But then as that list kind of kind of winds down, it gets to a point where it’s kind of like, okay, I really wish she was also up.
Allison: Yeah. I love that phrase you said about like, it’s not new, but it’s still challenging or something to that effect, right? I mean, that just sort of sums it all up, doesn’t it? About our caregiving lives and what did you just say? We’re on day 60 of this pandemic.
Justin: So, yeah.
Allison: It’s not new, but it’s still difficult. Yeah.
Justin: So how about you? How has your week been?
Allison: Yeah, also a little rough, I feel like. For I think probably a lot of the reasons you talked about, about being so deep into this. The other day, one of the ways that I’ve been coping is by cleaning things, because it feels like one way I can have control.
Allison: Although I have found then that I clean a whole room and then still feel just as terrible as I did when I began. But at least the room’s clean, I guess. But I was cleaning out my drawers and just found these two new bathing suits that I had bought for this spring break trip we were supposed to take that still have their tags on.
Allison: And then I’m also thinking, there’s not going to be any place to go swimming this summer. The pools are closed and the beaches are closed. So actually, on my Negative Space account, I posted a thing about grief and about that’s a little moment of grief that I was having through all this, knowing that my family is healthy and in the big picture, we’re fine.
Allison: But there’s things like having to cancel a trip that we had looked forward to is a big deal. And so I put it out there and said, hey, anybody else having moments of grief? Let’s talk about this.
Allison: And the response was really overwhelming. I mean, so many people are having kids who are missing their graduations and their proms or supposed to be going off to college or trips they had planned or like grandbabies they haven’t met. And it was interesting to me how many people said, thanks for giving us a space to talk about this.
Allison: And I was just thinking about how like in caregiving so often we talk about like, you know, that’s my whole thing, the Negative Space that like, we don’t have a space to talk about these things. But it was interesting to me that like everybody’s going through this hard thing and still we aren’t talking about it.
Justin: Yeah, it’s like, I don’t know if it’s just a cultural thing, but like grief is something that, I don’t know, we are supposed to go through alone, or it’s not a very communal thing culturally here.
Allison: Right.
Justin: And right now there’s like a singular sort of thing that has upended everyone’s lives.
Allison: Right.
Justin: Yeah, and so there’s this weird like collective grief, and yet it doesn’t mean that there is an open dialogue about it.
Allison: Right. And even still, I hear so many people say, well, I know, I mean, I’m sad about this, but it’s not as bad as it could be. You know, I said that myself a minute ago, right? Like, but I’m not in the ICU, so I shouldn’t complain. And, you know, you not getting to meet your new grandbaby, are you not going to go? Like, those are things, it’s, it’s, there’s not a hierarchy, you know?
Allison: Like, I think it’s okay to still say, this feels hard for me right now. And it just made me think about in caregiving. I mean, there’s so many levels and layers of grief that we as caregivers go through. And just thinking about, like, you know, we both had sort of pre-diagnosis marriages, right?
Justin: Yeah.
Allison: Like, we were both, like, living our lives with our spouses before all of this. And so one way I know that I sort of grieve in my caregiving life is thinking back to that time. So I was just wondering, like, when you think about that, like, because how many years had you and Sarah been married before her symptoms began?
Justin: Four years maybe. But we had been dating for five years before we got married.
Allison: Yeah. So when you think back, are there things about that time that you miss that you no longer are able to do?
Justin: Yeah, I mean, a lot of it is, you know, simple kind of things, like, you know, going out to dinner and having that be something to just decide one evening, hey, let’s go out and get some dinner. Like, that’s not, that spontaneity isn’t really as much of an option. There’s more, there’s just more logistical stuff.
Justin: You know, it depends on more things to be able to do something like that. So that’s things like that. And then just, you know, she was the person who I would, you know, go out and experience the world with, you know.
Justin: And so whether that’s traveling or whether that’s going to a family thing, like, yeah, that was, we were, that was, that was always a shared experience. And so the person I was primarily sharing all those experiences with suddenly isn’t able to participate in that. And so there’s that losing that person and feeling more alone in all those things outside the home.
Allison: Yeah, yeah, absolutely. And I wonder for those of us who, because some people maybe came in in the middle, right? And they don’t have a comparison, right?
Allison: But for, like you said, you and I have comparisons of what it used to be like. That piece about spontaneity speaks to me because I think that that’s something I think a lot about, like even this trip that we did have planned. It was kind of a big deal to even be able to plan a trip.
Allison: And we only did that because we had clear scans for once. And even in the planning of that trip, there was always an asterisk in the back of my mind. You know, there was trip insurance was purchased. And even when our daughter was so excited about it, I just, I mean, I never thought this would be the reason they would get canceled. But, you know, I think that now everything feels like it has an asterisk by it. You know, like if there is a plan, if there is a thing, it always feels like, well, maybe that won’t happen.
Allison: Like maybe the things that we took for granted of like, like you said, like, let’s just go out for dinner. Let’s go on a trip. There’s so many factors that go into just those little tiny things these days. And I think I missed the freedom or the maybe that’s not the right word, but just sort of, you know, just being able to do it without having to worry. I think maybe that’s another piece is that it feels like we used to be so worry free. I’m sure we worried about something else.
Justin: But yeah, there’s I don’t know, there’s a sense now of being tied to being home to Sarah in the sense that, you know, not just in the two of us going off and doing something, but for me to go out and do something on my own, like that’s more a more complicated situation to work out than before. And there’s always like this anchoring back to home where she is.
Allison: Yeah.
Justin: That, yeah, wasn’t quite wasn’t the same before she got sick for sure.
Allison: Yeah, yeah, for sure. Yeah, I think about that the two the two trips that I have taken without my family in the last year. I know that last time on our first episode, you and I both talked a little bit about anxiety.
Allison: But on both of those, I ended up having like kind of extreme like panic attacks. And I think that it was I don’t know that if it was sort of thinking like sort of the finally having a moment to myself or thinking like what’s happening while I’m not there. Or I think part of it also was for once I’m away and something’s got to happen to ruin this. Like this never gets to happen anymore. And so yeah, something like again, an asterisk like something’s going to go wrong. So I think that thing that you said about that that anchor almost feels like a tether, you know.
Justin: Yeah.
Allison: I have a good friend who lost her husband to ALS, and she said that for that whole time while he was sick, she never went more than 15 minutes away from the house. And if she got like 15 minutes further away, she felt anxious. And she said it’s just now that she’s starting to like cross the river over into the other side, the other Twin City, you know, and be able to feel like, oh, she can do that, right, without feeling like, oh, I’m too far away from home, right?
Justin: Mmhmm.
Allison: Yeah. So it sounds like, I mean, those are some of the ways that we maybe grieve the life we used to have. Yeah. What I think another piece of grief is maybe that, as I’m sure most people do, we probably had pictures in our brain of like what life was going to be like, you know, when we’re in our 30s and 40s, and there’s no way we would have ever pictured this, right?
Allison: And so wondering about like things that, grieving the things that we thought were going to happen that didn’t happen. Is there anything that falls into that category for you?
Justin: I mean, the big one is, you know, having children, having a family, that was always something that when we got married, before we got married, that was always part of what we wanted to do. We both, you know, think kids are awesome, and we wanted to, you know, have our own little family. And, you know, we were years into the process of adopting a toddler when Sarah got sick, and, you know, we had already poured so much energy into that, and to reach the point where, you know, we have to, we can’t, this isn’t going to work.
Justin: And to pull out of that, that was a really, really hard decision. And so, yeah, that was, you know, I don’t know, six years ago or something. And, you know, there’s been times where it feels, it’s very clear that we made the right decision, I guess, that having a child would have, we both just would have been so much more exhausted.
Justin: You know, there have been times when I’m completely burned out between work and taking care of her, and that would have, not that we couldn’t do it, or there are people who I’m sure, that is their situation, and they wouldn’t take that back for anything, but that’s not where we ended up.
Justin: And the grief around that really, it comes and goes. There will be long periods of time where it feels settled or something, and then for whatever reason, that the loss around that just really bubbles up. And I don’t think that it’s something that’s ever going to go away.
Justin: It’s something that loss is always going to be there, and maybe it will be felt less frequently or something. But I think part of it is getting to a point where, when you feel that grief, to be able to just feel it. I don’t know, you’re feeling it, it’s going to pass, and not treating it as something to work through. Well, not work through, but it’s not, I don’t know, just to understand that it’s not necessarily going to go away. And that to become, I don’t know, there’s a quote that I think sums this up kind of well. It’s from the book Modern Loss, which I think I saw on your website.
Allison: Yeah, I love them. Yeah.
Justin: Yeah, so, then there’s the passing of time, which hasn’t so much healed as it has taught me to better coexist with my grief. And so, yeah, I think that sums up this feeling well.
Allison: That it’s never going to be like, oh, well, it’s been six years. It’s been ten years. It’s been like, that’s still going to be there.
Justin: Yeah, and we’ve got ten nieces and a nephew now, and they’re all one to 11 years old. I mean, our child or children would have been in that age range growing up along with them. And so, I mean, I’m beyond thankful that we have them, those kids, to pour love into, and they are all amazing. But there’s also times when that’s a reminder of what we don’t have.
Allison: Absolutely, yeah. And I imagine we’ve got Mother’s Day coming up, and I’m sure that there are days like that that never get easy.
Justin: Yeah.
Allison: I wonder about, you know, because like you said, it was so powerful, you said in the beginning, Justin, about that you and Sarah would experience the world together, right? This is something, you know, not having kids is something that you’re both dealing with, but dealing with probably in different ways. And, you know, in some ways, it’s because of her illness, right?
Allison: Even if you both believe it was a good decision. And so, are you able to grieve together, or are you able to talk about it, or what does that look like?
Justin: Yeah. What has been difficult, for a while there, you know, we’re both grieving this thing, but we’re not necessarily going through the same process. You know, it’s, well, grief isn’t like a linear process that you’re going through step by step.
Justin: So like, where we’re at didn’t always line up with each other. And so there were times when, you know, she really wanted or needed to talk through things about this grief. And I wasn’t necessarily at a place with my grief where that felt like what I wanted to do.
Justin: And so just needing to have a lot of grace with each other to support each other in that. And I think that as the years have gone by, we’ve gotten better at recognizing that. And I also think that it doesn’t feel like there are as much of those times where we’re at and our grief is as off or out of phase with each other.
Justin: But yeah, because, you know, it’s a thing that collectively we both grieve it, but yeah, individually, there’s also things there. And it does get… There’s like a sense… Her illness is what is the reason for we’re in this situation. But yeah, clearly, it’s not her fault. And so that, for her, that’s another level to the grief, I think.
Allison: Yeah, yeah, absolutely.
Allison: I remember back in the day, speaking of like pre all of this, pre diagnosis, it felt like if Sean and I were having a hard time, typically like back then, it was just about like work or the basic things. And so it always felt like if one person was having a bad day, the other person could rally. And something I’ve noticed in this is that now the things that are hard are things that affect both of us.
Justin: Right.
Allison: And so it’s not just like, oh, I’ll put my hard day away and hear about your work thing. It’s like, oh, no, that’s something that’s hard for me too. And so even saying like, this thing feels really hard can, I don’t know if trigger is too harsh of a word, but can bring up things in the other person.
Allison: They can’t just be like a neutral support in this because they are deeply entrenched in the same thing, in the same scenario of the source of the grief, which sometimes is helpful, and also sometimes, like you said, we can be experiencing it in really different ways and in different times. So it’s hard to not have the person that usually is like your person to talk to you about things. Sometimes that can be challenging because they’re in it. They’re in the same pool, but sort of different kind of water, you know?
Justin: Yeah, and then with that grief of not having kids, especially now seeing my parents as grandparents, and I still have two grandparents myself, and they have all of these great-grandkids, and there’s that anticipatory grief of looking towards like, when you’re old, naturally, usually your kids take care of you. And that’s not something, like there’s just so much more of, you know, not knowing what that way out future looks like. And that can also be, you know, really difficult.
Allison: Yeah, absolutely. I think a lot of people, sort of I think this chronic illness community is where I first have heard that anticipatory grief phrase. And we had asked our listeners if there’s anything in particular they wanted us to talk about with this. And that was what came up, was this anticipatory grief thing. And so for people who maybe aren’t familiar, you know, it is more of that thinking about grieving something that hasn’t even happened yet, but that’s something that you know probably will. Right?
Allison: And so in our house, that is that, you know, Sean is way past the median age of death for his disease. And so partly that can feel like, oh wow, like he’s beating the odds and he’s, you know, like who knows what this is going to mean? And partly that can feel like it’s a ticking time bomb.
Allison: And so I think that I hold a lot of that anticipatory type of grief of like, what is the future going to be? You know, and so when you think of things like, you know, your child graduating from college or your child getting married or, you know, sitting on the porch retired and rocking chair, you know, any of that stuff, anything that’s like too far. And I won’t even say like way down the road future. I mean, you know, who knows? Like a year from now, like anything that’s in the future. Again, I think there’s that asterisk of me wondering, well, who knows what that’ll look like?
Allison: And so sort of grieving what might happen and what we might miss out on. And instead of, I think for so many people, like looking towards the future can feel like such a hopeful and exciting sort of moment. And instead for me, it feels just sort of perilous, you know?
Allison: And like I don’t want to paint too pretty of a picture in my mind because I’m not exactly sure if that picture will come true. To which I’m sure some people would say, you know, be positive and you never know. And I mean, you know what I might say to those folks.
Allison: But and certainly I do want to be positive and I do want to hope for all those things. And, you know, the numbers are against us. And so I think that as I do try to paint those pictures, there’s always sort of like, oh, well, that’s one way it might happen, but that might not happen at all.
Allison: Right? And so I think that’s a heavy, heavy way to be going through life. You know, as I think about these three things that we just talked about, about like mourning the life that we used to have, mourning the life that we thought we were going to have, and then grieving the life that in the future that we think we might not have, you know? And so you think about as caregivers, like I think if caregivers are so unseen anyway, but I think when people are starting to see us, I think they’re thinking about like, oh, the medications and the appointments and the whatever.
Allison: And this is a whole other layer. You think about us carrying around a backpack, right? Like we got a heavy backpack that we are carrying around of this stuff all the time as we do the other things that people are just starting to realize that we do, you know?
Justin: Yeah, and then to be able to not let all of that grief and all of that just, you know, fully become engulfed in that or prevent you from just moving forward day to day. That’s not always easy as well.
Allison: Right. Right. I think, I mean, that’s one of the reasons I love that you and I are talking in general, but also doing this podcast, because I think, I would guess even people who are, you know, later in life, who are grieving their spouse, right, and who have lots of people around them, who are also doing the same thing, even they probably aren’t talking about it and don’t feel like they’re able to talk about it as much as they wish they could. But I think especially like you and I are like, little unicorns in this, right? And so, like, it’s a taboo topic within a really rare kind of community. And so, if, you know, if we can help other people think about, like, it’s okay to talk about it. And, like, you said the thing about, like, just sort of being alongside it, right?
Justin: Right.
Allison: Do you have that quote again? I would love to hear that, like, that modern law.
Justin: Then there’s the passing of time, which hasn’t so much healed as it has taught me how to better co-exist with my grief.
Allison: Yeah. Co-exist with it. And I think just having these places and spaces to talk about it is one way to co-exist with it, right? I mean, even hearing you today say some of these things, it’s like, oh, yeah, that’s true for me, too. I hadn’t thought about that for a while, or that, or I maybe hadn’t said that out loud, you know, or to hear someone else. I mean, I say, it always, it’s hard for me when I, you know, a lot of times I have readers who say, you’ve got my words, and you sound just like me, and it’s reassuring to know I’m not alone, and it’s also sort of heartbreaking to be like, oh man, there’s more of us out there, right?
Allison: So I feel like that when I hear you talk as well, like, I’m glad that I’m, that you’re in this with me, and I wish that you weren’t, you know?
Justin: Yeah.
Allison: Yeah, yeah. Are there ways that you feel like, because I think it sounds lovely to say, like, walk alongside with it, and you know, right? Like, would make a t-shirt with that, but like, are there ways that you found to actually do that?
Justin: Yeah, I can’t say that I’m an expert at that, by any means, no. I mean, I think there was, for a long time, with a lot of the grief and just processing Sarah being so sick, there was, you know, initially she got sick, and there was a lot of energy that I had that was being poured into, like, okay, what is going on, trying to research all of that, and then also transitioning into kind of just keeping us afloat and surviving. That kind of, like, mental level for a long time.
Justin: And so that didn’t necessarily allow time to grieve what we were going through. And so I think a lot of that, it was years down the road before there was, you know, mental space for that to come up and feel that.
Justin: And so, I mean, I think, I mean, it’s easy to say this, and I don’t know exactly, practically how this works, but just letting, trying to have space for it to be there, or when you do feel that tinge of grief, to not necessarily quickly push past that, put that thought out of your mind, but to let yourself feel it, that that’s okay and healthy to go through and feel that. That doesn’t mean that you haven’t figured out how to be a caregiver or that that’s something you have to resolve or anything. It’s just, I mean, part of life for everybody.
Allison: Yeah. I love what you said about it’s okay and healthy. Like, it’s actually a good thing when we feel it, right? And I think that that’s so anti the way that most of us think. It’s like, oh, I don’t like that feeling. There must be something wrong with me.
Allison: I’m going to shove that way down, right? But for to be like, oh, no, actually, that’s healthy that I’m feeling it and recognizing it. And I know they say that sometimes about things like grief or anxiety to just be like, oh, hey, there. Hey, there, feeling. What’s up? I see you. Let’s just hang out, you know? And I just think that, you know, in this moment, we’re in such an interesting, interesting time in our world, right? We’re, like I said at the beginning, so many people are grieving, and we have, I think, an opportunity right now to kind of be together in it.
Allison: Like, it’s a good practice moment, right? That, I mean, it might be, like, if I wasn’t a caregiver and I heard you talking today, I might be like, oh, I don’t know how to support him. Like, that sounds really different from what I know or understand it. I might say the wrong thing.
Justin: Or you might feel like what I have isn’t as…
Allison: Mm, yes.
Justin: What I’m grieving can’t stack up to that.
Allison: Totally.
Justin: So, like, I shouldn’t talk about that.
Allison: Totally. Exactly, exactly. And so in this moment in our world, I think it’s a great time for us to sort of practice saying, like, hey, I’m grieving this thing. Like, I didn’t get to go to Florida with my family. That feels really hard.
Justin: Mm-hmm.
Allison: You know, and to put it out there, knowing that, like, it’s not going to sound petty because most people have something just like that, right? And so, and then to say, like, how about you? Is there something that you’re grieving right now?
Justin: Mm-hmm.
Allison: So how can we use this moment in time as, like, a sandbox, right, to practice some of this stuff? Because we’re all in it together. That’s going to make us better later on, right, in connecting with each other.
Justin: Yeah, I think, I mean, similar to that post you had about, hey, what are you grieving right now? Just to bring that into, you know, everybody’s having these Zoom calls with friends and family.
Allison: Yeah.
Justin: And it doesn’t, you don’t have to make it a big downer of a topic, but just, like, talk about what stuff isn’t happening that you were hoping to have happen. And just on a small level bringing that in.
Allison: Right.
Justin: Because, yeah, it’s, in my lifetime, I don’t know, there haven’t been, it doesn’t seem like there’s been these moments where, you know, one thing has, like, everybody is affected by it. Like, worldwide, everybody’s lives are upended. And so, like, if ever there was a time for us to have, you know, common ground to talk about things that we’re grieving, like, it is now.
Allison: Right. Absolutely. I love that because I think so many people are having Zoom calls with their families and friends, you know, and then it gets, it sometimes can spiral into like, oh, did you see the news? Oh, did you, you know? And I think it’s a, you know, whereas six months ago to say, like, what are you grieving right now might have felt uncomfortable to people. Everybody’s got an answer right now. I mean, let’s be honest, six months ago, probably everybody did also. But I think that, like, now acutely, people really do.
Allison: And so I think that’s a great way to sort of open that conversation and normalize it. And like I said, just some sort of practicing of those skills of talking about stuff so that on the other side of this, we can be better at, you know, talking about some of the stuff and supporting each other.
Justin: Yeah, and I think about, like, with the family Zoom calls, like, you know, my nieces will be on there, and they’re certainly, you know, they’re not seeing their friends. Right. They’re not, their lives have been hugely altered as well. And for them to hear other people talking about things that, you know, they’re grieving or missing out on, Yeah. you know, feeling like they can vocalize that as well, to feel like that’s normal and okay and healthy.
Allison: Yeah. What a good life skill for them to hear too, right? And for them to be able to say, Yeah, I miss my friends.
Justin: Yeah.
Allison: Yeah, I miss going outside with the people in the neighborhood. You know, like, to be able to say those things and not feel like, well, they have to qualify it, which we had, you know, of like, I know I’m not sick, but, you know, no, that’s a great idea. We’ll have to, we’ve been doing Sunday Zoom calls with my family, my extended family, and so we’ll have to, I’ll bring that up and see how it goes, because we have ages nine to 73 on those calls. So I’ll throw it out there and see how it goes. I’ll report back.
Justin: All right. Good luck.
Allison: Yeah. Hey, I appreciate so many of the things you said today. I mean, I know we’re digging way down deep into the negative space, and I appreciate you sharing those things with me and with the people who are listening, because I know that, you know, it’s not easy to talk about this stuff. And I know it helped me just to hear what you had to say. So I appreciate it.
Justin: Thank you. Thank you. Yeah, it’s good to hear what you’ve shared as well. And I think it’s, yeah, I think as we’ve gotten to know each other, hearing each other’s, you know, things that are different that we’ve experienced and things that are similar, it’s been a good, encouraging thing.
Allison: Yeah, yeah, yeah, definitely. All right, on to a new week. Hopefully this new one’s better than last, right?
Justin: We can hope.
Allison: Right, yeah. All right, we’ll see you later.
Justin: See you.
You’ve been listening to In Sickness. Find us online at insickness.care or on Instagram @Insicknesspodcast. You can send your questions and comments to insicknnesspodcast@gmail.com. If you enjoyed the show please share it with a friend or fellow caregiver or leave us a review on Apple podcasts. Thanks for listening, and take care.