Transcript
You’re listening to in sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Justin: Good morning, Allison.
Allison: Hi Justin. How are you today?
Justin: I’m doing okay. It’s been kind of a, I don’t know, like a weird time, but like, as I mentioned previously, I’ve been going through some more TMS, and I’ve reached the end of, like, my scheduled sessions, and I’m waiting to hear back about potentially doing more on, like, a once a week maintenance, kind of like, schedule. But it’s kind of, it’s in that period where it’s, like, waiting on insurance.
Allison: Yeah
Justin: And so, like, certainly, this latest round of TMS has helped me significantly. And I’m like, in a much better place than I was when I started in. I don’t know if it was November or December, but like, I’m also not, like, depression is not gone.
Allison: Yeah
Justin: And so it’s like, what’s gonna happen in this? Am I gonna get more sessions, and is that gonna continue to help me? Is that not gonna happen? And then, you know, am I gonna, you know, yeah, it’s just, it feels like a lot to kind of just be sitting with and holding a little bit right now.
Allison: Do you feel like the place you are right now? I know that it doesn’t necessarily stay right? It’s not like, I have enough, and it’ll just stay like this forever. But like, how do you feel in this exact moment? Do you know what I mean, like, about sort of your level of depression and like, where it’s gotten you today?
Justin: Um, I mean, I feel there’s still more that there’s still too much depression.
Allison: Yeah, yeah. I think probably any amount is too much, right?
Justin: Yeah, right. Like, certainly, like, I said, it’s much better than it was, but, like, I’d like to continue to move in the trajectory of feeling better.
Allison: Sure, absolutely.
Justin: And so, I guess you know it’s, it’s one of those, all I can do is kind of wait and see. There’s not, like, any action for me to be doing necessarily, right now. But it’s just that kind of weird limbo, yeah, liminal space to kind of be sitting in, yeah.
Allison: It must be hard to know that there’s this thing there that helps, right? Yeah, to like, not always have access to it.
Justin: Right.
Allison: Right? I’m sure. I mean, I know a lot of people in the world have to deal with that, of like, about medications that they aren’t covered or whatever that is, but to be like, there’s this machine down the road that could make me feel better, and I wish I could go there every day, right?
Justin: Mmhm
Allison: So, yeah, well I’ll be with you in the waiting, because I know that sometimes the unknown is the hardest of like, am I gonna get more? Am I not gonna get more, you know, and so, and just hoping that what you have gotten, holds on.
Justin: Thank you.
Allison: Yeah, yeah, that’s a lot, yeah.
Justin: What about you? How are things going over there?
Allison: Um, I’m having this kind of awesome morning.
Justin: Oh, tell me more
Allison: It’s kind of like, like, I don’t do vision boards, but if I did, this would be on it, my very favorite. And I’m sure everybody knows, because they talk about it all the time, right? The author, speaker, podcaster is Kate Bowler. She’s amazing. If you don’t know about her, listeners, just turn this podcast off and go find her right now and then come back.
Justin: Then, come back.
Allison: And listen to the rest. Yeah. Um, I just love her so much. And so last Friday was National Caregivers Day. And so today her team posted a blessing for caregivers. They have this brand new book out that are full of these, like lovely blessings. And so, they posted one about caregivers and then are doing a giveaway with The Negative Space to give away from with me.
Justin: With you?
Allison: With me!
Justin: Wow!
Allison: I know I still can’t quite wrap my brain around it, so just feels quite unbelievable, because she’s this person I’ve like fan-girled over for a long time. So, to have a post that says Kate Bowler and The Negative Space, I’m like, what?
Justin: You’re like, glowing right now.
Allison: Oh yes, that’s true. I feel like that. I do. So, and also, I just think her, you know, she has stage four, um, colon cancer. I think it’s colon, her stomach. And so, I just think that the work of The Negative Space could, could be a blessing to a lot of her followers. And so, I’m right excited that, you know, some of them hopefully might find my stuff, and then it might be a gift to them as well.
Justin: Yeah
Allison: So I thought today I could start by reading a little bit of the blessing for caregivers, because it’s just beautiful. So, this is just an excerpt, but, “God, come and be the hands that sit me down and keep me there long enough for me to really feel what I feel, and know what I know. Come and be the wisdom to find that the community is broad enough, kind enough, effective enough, to meet the needs that are here, both mine and theirs.” So that’s just an excerpt, but I think that really the thing that stuck out to me about that is both mine, the caregivers and theirs.
Justin: Right.
Allison: And it’s something I’ve just been thinking a lot about, about the balance, because I think, you know, we’re so often told, take care of yourself, take care of yourself. You have to take care of yourself, right? While we’re taking care of this other person.
Justin: Yeah
Allison: And this, it can feel like, how do we do that, right? Yeah, even as I’ve been talking about, like, in the final days and weeks of my mother-in-law’s life, I’ve thought a lot about, like, who, whose needs? Like, you know, obviously it’s her needs and wishes. But what about our needs and wishes too? And how do we, how do all of those needs and wishes, which are all vital and important.
Justin: Right
Allison: How do they all play together? How do we find a balance of take of caring for ourselves and not losing ourselves, um but also doing this really important job and realizing that the person that we’re caring for, like, has really important needs. But so do we, right? And so, right? So anyway, that was just something I’ve been thinking a lot about, and I was hoping we could maybe talk about today.
Justin: Absolutely.
Allison: And so, as you hear that this morning, like, what? What does that bring to mind for you?
Justin: Yeah, I think about, like, the beginning of, you know, maybe a lot of people’s caregiving journeys, where things can start out and you don’t know whether or not it is an acute thing or it is a like, this is a long-term thing.
Allison: Yep.
Justin: And in the initial period, it’s like, yes. Like, every bit of energy we have is going to this person who is sick or injured or whatever has happened.
Allison: Yeah
Justin: And it’s like, that’s and that, you know, makes sense. And as you transition into like, oh, this is a like, long-term thing, like, you have to go through the like, I don’t know. You have to figure out how you are going to, like, find that balance that you’re talking about, that like, you can’t suppress and ignore and just like neglect yourself and like your own needs.
Justin: Um, or it’s not going to be a sustainable process or situation. Like, you’re going to burn out, you’re going to feel resentment, you’re going to, you know, all of these things, it’s just not going to work.
Allison: Yeah.
Justin: And that’s not going to serve the person you’re caring for.
Allison: Right. Yep.
Justin: So, it’s a, I mean, it’s easy to just say, like, yeah, you have to figure out, but it’s hard.
Allison: How?
Justin: It’s hard and it’s complicated.
Allison: It is.
Justin: I think that, you know, for people who are caregivers, not, certainly not everyone, but I think a number of us, like, we want to be helping.
Allison: Oh, for sure.
Justin: Like, if there is a need, we want to fill it.
Allison: Mmhmm
Justin: And I think that, like, how do we find, you know. I think it’s a situation where, like, one, that’s where having more people in your life supporting the entire situation, to where they can, like, okay, here’s a need, maybe someone else can fill that need right now this time.
Allison: Yep, yep.
Justin: But also, like, I think we often think about the support around us, how that can help meet the needs of the person we’re caring for. But I wonder also how we can think about the community around us. How can they help meet my needs as well?
Allison: Exactly. In fact, if I can pull this up really fast, I’m going to see I’m going to read this last line again, because it’s exactly what you just said, right?
Justin: Yeah.
Allison: “Come and be the wisdom to find that the community is broad enough, kind enough, effective enough, to meet the needs that are here, both mine and theirs.” Right? So exactly what you just said that, like, it’s not like we think that. Like, when I talk about the ianacare app and putting out our needs and whatever, most people think about, like, oh, well, let’s and he needs a ride to the thing, or we do. But like, how can we build something in for us, right? And the other members of the family? I want to mention that as well, because, so we’re both in, you know, spousal situations. But I have heard of caregivers who, let’s say they’re caring for their parent and then their, their spouse. You know, is like, what about me? Right? So, I saw this caregiver recently who was talking about how that was happening, that like she was spending so much time with her, away at her from her house, at her mom’s, with her mom, that it was like, what about the people at her house at her house, you know? What about her family? And so, I picture it like I was trying to imagine. Because, you know, if you think about a balance, right, like a little scale, like, typically, it’s like, oh, they’re even on both sides. And that’s not what we’re looking for, right? We’re looking. Like, how do you, so, I don’t know what that analogy would be, but I think about even, you know, like, when people say, like, oh, is marriage, 50-50, it’s like, well, no, it’s not. Sometimes, sometimes one person is sick, right? Sometimes, like, someone’s got the flu, or someone has a bad day, or somebody whatever. And so, it’s 80-20, or whatever, right? And I think, how do we have it, so that it’s not always 80-20 so that we’re always at the 20, yeah. Does that make any sense?
Justin: Mmhmm
Allison: And then it gets more complicated when you have more family members, because then how does the path work? You know?
Justin: Yeah, yeah. I think, like, as the as the caregiver, like, certainly, there are times when the needs, the immediate needs of the person you’re caring for, are the most urgent, or, like, top level thing, like this, we have to deal with this and help right now. Like, and what’s going on with me? Like, has to take a back seat. And I think as caregivers, we can all relate to those situations, whether that’s like, the person we’re caring for, like, has something, like, medically, something is not well, and we’re like, in a situation there, or, you know, whatever it is. So, there are those moments, but also like, I guess we have those moments too, like where we’re exhausted and we’re tired and like, we need that space too.
Allison: Yeah.
Justin: Um, you know, I think about like, when Sarah was going through her years in bed, and like, she would have days where she was just, like, in pain and just miserable, and like, really wanted me just to be there with her. And it’s like, like, we’ve kind of talked about like, my role there was just kind of like to be a witness to what was going on.
Allison: Yeah, yeah.
Justin: And like, there were a lot of times where I could do that.
Allison: Yep.
Justin: And it was hard. But also, there were some times when that was like, too much, and like, it was okay make sure that she has, you know, what she needs. But like, I need to go to another room and just kind of like, it’s just too much to be in that situation at that time. And like, you know, I’m grateful that we have a relationship. And like, we had a, you know, years of marriage before this to, like, work out, like balancing each other’s needs before this. And like, we have that understanding, um, going into it, which I think I’m very grateful for. And I’m also cognizant that, like other people in caregiving situations have much more difficult and challenging interpersonal, uh, dynamics going on.
Allison: Yeah, well, said.
Justin: Um, that would make this a lot more challenging. I think, um.
Allison: Can I ask in those moments, would you say to her, you know, like, I just need, I know that you would like me for me being here right now, but I just need to step away. Or, like, you know, like, were you sort of clear?
Justin: Yeah, I think so, yeah.
Allison: And how did, how did that feel for you to say those words, you know, to like. Were you nervous? Like, you know what I mean, were you sort of, like, uh how do I tell her that?
Justin: Yeah. I mean, I think it, it feels a little like there’s some guilt there. Like, because it’s for whatever reasons it takes. I think it’s one of those things that takes practice to, like, know how to take those steps when you know that’s what you need.
Justin: Like, because just the like, we want to help, we want to be there. Like, it’s natural. We feel a little bit initially, maybe the first few times we’re doing this, like, this, is this okay.
Allison: Right.
Justin: But like I mentioned before, you have to find the balance to make this sustainable for the long term. Yeah.
Allison: Something that’s striking me as I listen and think about this is that, like hopefully, nothing that will ever happen to you or me will be on paper as terrible, right, as what’s happening to our spouses? If that makes sense.
Allison: So, it’s sort of like, you can’t it’s not like, pre-sickness in our marriages, where we could be like, oh, you’ve got the flu this week, and I don’t? You win. Like, I’m the helper. You go to bed. I will do the things. Do you know what I mean? Yeah. Like, so we can be like, I’m tired, or I’m this, or I’m stressed, or it’s too much to watch you in pain, but like, there’s never that super clear, like, you win. Because, like, they’ll always just, do you know what I’m trying to say?
Justin: Mmhmm
Justin: Yeah, I do.
Allison: Which I’m just saying is that just that it makes it harder for us, because no matter what we’re going through on paper, they always it worse. And so, it’s harder for us, I would imagine, to be able to stop and say, I can’t, I need a break, or I needed this, or I need that? Does that make sense?
Justin: Mmhmm. Yeah, it does. I’m, I don’t know. I’m thinking back again to, like, when Sarah was really not doing well. And like, certainly, you know, I was not, because she was not doing well, and I had a lot to do to take care of her, on top of working and all of that, like, the things in my life that I would have wanted to do and that would have, like, fulfilled the, you know, my interests or whatever, like, I couldn’t do all of that. Um, whether that’s, you know, meeting with friends or going out and, you know, spending time on hobbies or whatever it was. And so, like, you know, we kind of, we talked through a lot of that. And like, there was like, okay, what’s the like, early on, it was like, fishing. And so like, if there is a, if there is a time when I can get away, like, I will get away and do that thing, and I can, you know, tell Sarah, you know, I’m gonna go fishing for a couple hours. And it was, like, it wasn’t like, a, well, here’s this thing I want to do. Like, it was already, like, this is the thing. And so, it’s like, it was much easier it was just kind of the standing thing. And over the years, that has shifted to other, other hobbies or things, but just having, like, that kind of like standing thing that, like, here’s this thing that I’m gonna go do. And it’s not, you know, it was from the context initially, of like, okay, what do I need for me to survive another week?
Allison: Yeah
Justin: That is kind of the level we were at. And so, it’s like, I need this to get through the next week of our life. And so like, yeah, it makes sense to like that I need to be able to do, to do that. And, you know, it’s important.
Allison: Yeah, it is. And it can feel selfish. Like, oh, your wife sounds sick, and you’re out fishing, cool. You know? Like, you know, I don’t actually think that, right?
Justin: Right, yeah.
Justin: Yeah.
Allison: But, I mean, I think those are the things that tricks our mind can play on us, right? Of, like, really, you’re going fishing, you know. And so, it’s, I’m so glad that you, like, saw that, found that, talked to her about that made a way to make it happen. Do you know what I mean?
Allison: And so, because I think we can, we can so quickly just be like, well, but who am I to go to a yoga class when my person’s sick? Or who am I to, or it’s gonna be more work because I’m gonna have to find respite care or whatever. But I think we, like, you keep saying, like, it’s not sustainable to not do it, you know.
Justin: Well, and I think there’s also, like, just putting it off, like, you know, you tentatively plan to do something, and it’s like, oh, okay, things aren’t great this week. I’ll do it next week. And that can just keep happening forever.
Allison: Yep, yep.
Justin: And I think the other thing too, that I was going to say is, no matter, like, these are complicated situations that we’re in. And we’re having to, you know, figure out this balance, and people around us are going to have opinions, and like, there’s always going to be someone who thinks you’re doing it wrong and not finding the right balance. And like, you can’t. You can’t listen to those voices, like, you were in the situation, like, you know what you need.
Allison: Yeah. Well, I think we don’t. I think we’re not always good at knowing what we need.
Justin: Fair. Yeah, that’s true.
Allison: I think that we shove off what we need and shove that way down. You know? Which again, the first verse I read of that about of the blessing that was sort of like, help me to just sit still for a minute and feel and think about what we need. I need. So, I think that it’s not always that I’m walking around being like, oh, I wish that I had a chance to go do dadada. Or like, we just put our needs often way at the bottom.
Justin: Right.
Allison: So, for some people it might just like that’s step one, is to sit still for a minute and be like, what, if I had an extra hour this week? What would I do?
Justin: Yeah
Allison: What would fill my bucket? And how can I make that happen. And maybe it’s like, if I had an extra 15 minutes, if I had an extra whatever.
Allison: Yeah, I just saw this, you know, artistic thing, whatever, these flowers. And it said, pick yourself first. And I was like, you know, I think that in relationship to this conversation, like it’s not, it’s not that, but it’s also not pick your person first. It’s every day you’re gonna pick somebody different first.
Justin: Yeah.
Allison: You know what I mean? Like it’s just, I think it’s, it’s that piece about the variation of some days it’s me, and some days it’s him, and some days it’s her, and some days, you know, like. So, I think it, we can’t just go into it like, because otherwise, like you said, we’re always going to pick them first.
Justin: Right
Allison: Especially in these chronic illness things. You know, even back last month when I was gonna go on my trip to Mexico, and I was trying to decide, because at that point it was sort of like, okay, Sean’s mom is sick, but we didn’t know how sick. And a good friend of mine, who’s like, a super caregiver, was like, you know what? I’ve realized, she’s like, I’ve canceled so many trips because people in my life have been sick, and I just have realized, like, there’s work, you just, sometimes you just got to take the trip. You got to take the trip, right? And, you know, at that point, neither of us realized what, you know, how serious this was, right? Yeah, right. It was different. But I think that’s the thing, is, like, there’s always gonna be a reason not to take the trip.
Justin: Yeah
Allison: There’s always gonna be something going on. There’s always gonna be a reason to be like, oh, I guess I shouldn’t go on my fishing thing. I shouldn’t go to the yoga class. I shouldn’t, you know, but we still have got to do it. You know, we have got to find that balance, you know, of like, meeting our needs, as well. I wonder too about like, we’re talking about needs, but I also wonder about like, like wishes or desires, right?
Justin: Yeah.
Allison: So, let’s say that your person really wants to go on a trip and they’re like, or, let’s say you’re a super social person, and your person is like, guess what? I can’t I just don’t like being around people anymore? So, then what do you do in a situation like that, right? Like, where it’s like, or just, oh, I guess we just don’t see people anymore. Do you know what I mean? Like, when there’s something that really fills your bucket, but your person it doesn’t, you know? For whatever reason, either if they can’t or they just don’t want to. You know, how do we not let ourselves get lost in that when this is a chronic thing? Do you know what I mean?
Justin: I know what you mean, and I think that’s a situation where, like, I think if that is a big thing for you to have the social stuff, like, I think you have to find a way to, um, to meet that need.
Allison: Yeah
Justin: And you know it very well could look different than it did before your person got sick. Um, and so, like, maybe for you, prior to that, it was like, hosting dinner parties or something. And like, that’s probably if your person is, like, social things are too are a lot for me, I just can’t handle that. Like, having a bunch of people at your house and all the activities is probably not the right setting there. So, you know, find, I don’t know whether then you go, you know, have a standing like, once a month you go out to dinner with friends. I don’t know what it is, but like, you have to, you’ve got to find a way to meet that need. Otherwise, like, over time you’re just like, you’re not going to be as like, your bucket’s not being filled.
Allison: Exactly, yeah.
Justin: And that’s going to wear on you. And you’re going to, you know, that is a place where, you know, resentment can start to creep in, if it’s like, where it feels like this thing that has happened, and, you know, where the illness is, is controlling our lives, kind of thing,
Allison: Yep.
Justin: But again, that’s, it’s hard, it’s not easy. You know that that might be a hard conversation to have with the person you’re caring for. And I, and that’s where, like, again, like, I have the perspective of like, feeling like, I have this, like, Sarah, and I can have those conversations. And I wonder too, like, it whether, like, that’s different, how do you have that conversation when it’s like, you’re caring for a parent or something?
Allison: Right.
Justin: It’s like, you’re not, it’s a different situation there. And that’s, I don’t know how that plays out, you know where it’s not, you know, my, my experience, is caring for the person I’m married to.
Allison: Right.
Justin: And that’s a specific kind of dynamic and case here.
Allison: Yeah, for sure. And I think even, like, like, my dad is struggling with some mobility issues, and so at this point, you know, like, he has a walker. And so, we have to think about things like, okay, if we go to a place, are there going to be stairs, you know?
Allison: And so, thinking about that kind of thing, like, how? So sometimes it could be that the person in your life just doesn’t, like, you know, and I think that could be true in any marriage that, like, I really, I’m not, this is not me, but I really like to go to sports events, and the person you’re married to doesn’t. And, you know, sometimes in marriage, you just, like, navigate those things. And you know, it’s not like you stop going to sporting events because your person doesn’t like them.
Justin: Right, yeah.
Justin: Yeah.
Allison: But then sometimes it’s harder when it’s because of the illness, right? Let’s say, let’s say, in your situation with the house parties, the dinner parties that your person really wants to still be social, but just like, really physically can’t.
Justin: Yeah
Allison: So that’s harder, right? Because if you’re like, I’m gonna go on out to that party
Justin: Yeah, that’s a lot harder.
Allison: Right? It reminds me of our we did that sick one healthy, one episode, yeah? Right. So, there’s, I mean, there’s a lot of different things to sort of sift through, right? You have to be more sensitive to that to be like, well, I’m still gonna go to the party, and I know I wish you could be there, and I’ll bring you back a piece of cake, or, let’s Zoom you in. Or, you know what I mean, but that’s tricky, too, you know? But I think when you said, like, we have to find, in some ways, we have to find other ways to fill our buckets. And so sometimes we imagined that like, well, my spouse was going to be the one to do all these things with me.
Justin: Right.
Allison: Right? But then it’s not like, oh, well, if my spouse can’t, or doesn’t want to, or whatever, that you’re like, well, I guess I’ll just never do that. You know? How can you find a different person? And maybe that’s traveling, right? Or like, you are about to go on this really cool, fun solo trip, and you’ve done that a couple times now, right?
Justin: Right. Mmhmm.
Allison: And so, you’re not like, oh, Sarah, can’t travel, so I will just never travel again. You’re finding ways to still meet that need.
Justin: Right.
Allison: You know? And I think that that can feel hard when, in the past, I know you and Sarah traveled a lot together.
Justin: Yeah. Right.
Allison: Right? When it’s like, in your perfect world, you’d be traveling together. And so there can be some grief around that.
Justin: For sure.
Allison: What I pictured is that we would be taking trips together, but also that you’re not just saying, well, I guess we’ll as a couple, or we, neither of us, will ever travel again. You’re finding out ways to make it happen. Does that make sense?
Justin: Yeah, for sure. And I think that that’s an exercise that’s helpful to go through. And again, it’s, it’s work that we have to do as caregivers, and it’s unfortunate that, like, I don’t know, I don’t want to feel like I’m giving, giving you homework as a caregiver, but like, looking at the things that in the before time, if, if your situation has a before time, like, what did, yeah thinking about, I mean, again, I’m talking about it someone you’re married to, because that’s my context. But like, what did you do together that, like, filled your buckets? Like, what? What were the things that your person did? What were the things that you did? Like, thinking about what those needs are and what filled them before, or, like, the things you’d like to do, so if, for example, that was travel. Like, what was traveling really? What itch was that actually scratching?
Allison: Yeah
Justin: Because, like, you’re not, maybe in a situation where you can, you know, go fly to another country for two weeks and just kind of, like, experience the local culture, like, that’s not your, you can never, you can never do that again with your person, you know? Like, that’s so, like, what else? What is it about that, that you really loved?
Allison: Right.
Justin: And so, like, I guess I don’t know, we’re talking a lot about travel, I think, but like, for me, like exploring the area, like my local area. Like, travel. There’s something about traveling that is, like, that exploration, that adventure, sort of like sense. And so like, for me, I can’t go do that across the country, but like, I can go up into the mountains and, like, find new, cool places, and like, explore locally. Like get to know the area around me and that kind of scratches a similar itch.
Justin: So, like thinking through like, what, what were the things, you know, and it could be, you know, there’s things you’re mourning that you can’t do anymore, and think through like. Okay, what you’re, unfortunately, maybe it’s not going to be a like, one to one, I can find a substitute thing. But like, what was that thing that I loved to do? What need was that meeting within me?
Allison: Sure.
Allison: Yeah, yep. And you might realize in that that, like, it was the togetherness.
Justin: Yeah.
Allison: Right? Um, it was the like, discovering new things together. And for some people, they might say, like, well, if I just wouldn’t like that, like traveling by myself. That wasn’t the point. The point was, like exploring these new things together. And so, you know, I think you’re right to get to the root of that, like, what are the things you could do from home? Like, during COVID, we did this, like New Zealand thing, where this guy on this farm in New Zealand, like, Zoomed us in and, like, took us around his farm, in this like adventure, you know?
Justin: Oh, that’s fun.
Allison: So, it’s like, what are the things like, if you could still, if the need or the thing that you were trying to, that you loved about traveling as a couple was, like, discovering things together, right? How can you do that instead of just again, being like, can’t do this anymore, not going to do it. You know? Yeah. I’m thinking too about other family members, right? So, we’re talking about spouses. And I think that’s a complicated one, but I just think about, you know, one of the hardest things, and it’s a little easier now because she’s older, but still, like, one of the hardest things I think about caregiving for me, has been finding the balance of, like, meeting his needs and meeting her needs. I don’t even put my needs on the list usually, so.
Justin: Her, being Maya?
Allison: Yes, thank you. Our 16 year old. And so, like, I just think of so many times, like, I just saw a memory on Facebook come up, of like, it was Valentine’s Day, and we had decided as a family that we were going to order like, a heart shaped pizza and have a heart shaped cake. And then he, this was right after the transplant. He needed blood transfusion, you know? And so, this picture of us sitting in the clinic, and it’s like, 7pm and he’s hooked up to blood. And I was like, freaking out, because I was like, we promised her heart shaped cake. And she was like, 5 right, and this was this thing we were gonna do as a family, and blah, blah, blah, you know. And I got home, we finally got home, and I was so apologetic. She’s like, what? We were gonna do cake or we’re gonna do pizza? It’s fine. I don’t even know, you know. But I just think there’s that constant pull, you know, when you have multiple family members of, like, who should I who needs me most, right now? You know? And so, it’s like, he would have this really acute medical thing going on. But, she’s a kid, right? So again, I can’t always just be like, his is going to be worse. You know, there are times that I’d have to be like, you just go rest. I gotta go, like, hang out with our girl, you know? Like. So that’s just this, this pull. But I think too, you know, so many people are caring for aging parents, and that can be so hard because often the parent doesn’t live with you. So, then you’re at work all day, and then you go see the parent for a couple of hours, and then you come home.
Justin: Right.
Allison: And then there’s your people, and you’re like, I haven’t seen you all day, but now I’m so tired, you know? And so, I think it’s just an interesting, and I don’t know the answer to this, but I think to be like, how do we, how do you parse out your time and your energy between to not just be like, Well, my mom has, this is hypothetical, my mom has this really intense medical need, or she’s alone, so I should spend more time there. But then my husband, you know what I mean?
Justin: Yeah
Allison: This wheel of people who need you. And how do you figure it all out? Because it’s not always this person’s need is the highest, so they should get the most time, because otherwise, some people would get zero time, and that’s not, you know?
Justin: Right, yeah, mmhmm.
Allison: So again, I don’t have the answer, but I think it’s, you know, and how can we, again, back to the Kate Bowler thing, how can you bring in a team, right, so that it’s not so it’s like, okay, so is there a sibling? Is there a paid person? Is there somebody else who can take care of this person for a while so I can be with this person? Then also, like, is there time for me? You know?
Justin: Yeah, I think that community aspect of it where, like, as you’re talking about, like someone caring for an aging parent. Like, okay, is there someone else that can also be checking in with them, so that that is not something I have to do every day?
Justin: Like, that’s one way to handle that, to bring in community. But like, I think I don’t know. The thing I want to think about with community today, as we’re talking is, like we so often talk about, like you mentioned earlier, how can the community meet the needs of the person we’re caring for? How can they help with the caregiving situation?
Allison: Right.
Justin: And you know, even in the in the sense of, like, taking something off of your plate as a caregiver. But also think about, how can your community help you fulfill what needs you have in your life, that maybe you can’t you don’t have access to in the same way, because your person is sick or because that was the person you would do those things with? So, like, if you would, you know, go to musicals all the time, and that’s something you loved doing with, with your person. Like, okay, they’re not able to do that anymore. Is there someone else in your community who can be that person?
Allison: Yep.
Justin: You know your musical person, and you can go do that and that’s maybe also there’s some grief there that, like, I’m not here with the person that I would most want to be here with, but like, and feeling guilty that, oh, I’m here enjoying it, but they’re not here. And, like, you got to walk through that. But, you know, I think most of the time, the person you’re caring for wants you to also be able to continue living your life in a way that is fulfilling for you. At least in my situation, I know that is true. Absolutely. Um, and Sarah does not want everything to stop.
Allison: Right.
Justin: Yeah.
Allison: I think we’ve said this many times, but I think you and I are both in uniquely marriages.
Justin: Right.
Allison: Right? And so I want to acknowledge that a lot of people, and especially if there’s, you know, dementia or something involved, where, for traumatic brain injury, where you know this, sometimes those relationships can get really hard because it’s, you know, there’s emotions and stuff that are coming out that are not, not kind, right? Or maybe you’re in a relationship that wasn’t lovely to begin with, and now it’s even harder, right? So, you might be facing the person you’re caring for is like, what do you mean you’re leaving, or you can’t either, and that makes it even harder, right? And so, I just want, and I think, like, you know, you’ve been saying this too, but I want to acknowledge that you and I, like, it’s hard, but we also have, like, lovely relationships, and that that, most people, I think, not, not the case, unfortunately, you know?
Justin: Right, yeah
Allison: Or if you have little kids, like, little kids don’t always understand if you’re caring for kids and they’re like, what do you mean you’re leaving? Or even aging parents, like, they might be
like, what do you mean? You’re not over here, right? And so, fighting through that guilt that we already feel can be an even deeper slog to fight through when the relationship is more complicated. Yeah.
Justin: Yeah. So, I think we’ve talked a lot about here, about like, the importance of like, finding of the importance of needing to, like, make sure that our needs are being met as well, like, or we’re gonna burn out. It’s not gonna be sustainable for the long term, but like, in the moment, that’s really hard. And so like, how do you, I don’t know if you have any advice or input on, like, how do you do that on a like, moment, or, like, on a daily basis? Because I think that, you know, it’s there, it’s, you know, you can get things on your schedule. And maybe that, maybe that’s part of the answer is, like, schedule things for yourself.
Allison: Yep.
Justin: And we’ve talked about that before. Like, whether that’s, you know, whatever that is, like having a standing thing for you, so that that is set. But like, you know, I could come home from work and be exhausted, and it’s a situation where Sarah is having a terrible day, and, like, I need to be there for her. And like, you know, in those moments, like, how do you, who wins? It’s not, I don’t like that. No, I don’t know that I like that phrasing. But like, you know, in the moment, how does that play out?
Justin: Yeah, yeah, yeah. So many thoughts. Um, I think that it’s one of these things I wonder about, like, a dress rehearsal, about, right? In that that so there’s the pre work of, like, planning things in, right? Like, every Tuesday night, this thing happens, or every day at 6:30am this thing happens, whatever, right? But I think some of those dress rehearsals. Like, hey, what if, like, what if you and Sarah had that conversation. What if there’s a night where we both really need something. Then, what? You know? Just because when you are in the moment, you are not in your thinking brain. So that is not the time to strategize, right? And so, it’s sort of like I was working with someone the other whose child is having a lot of behavioral issues, and I helped her create this thing, like, when I feel mad, here’s what I need. And every member of the family made the chart, right? And they did that at a calm moment. So that now next time they feel mad, they can look at the chart and be like, oh, you feel mad. You said that when you feel mad, you’re gonna want these things, right? So, it’s sort of like we have to do the practice. Sorry, this is the educator coming out of me.
Justin: No, go for it.
Allison: But to do the practice when we’re calm, and so to say, like, how do we how do we navigate those days? What do we do on those days when both of us are really struggling, you know? And maybe it’s something like, you lower your standards, right? Which means you get takeout. You say, like, I don’t care that I had prepped or planned this meal. We’re ordering pizza,
you know? Or we’re not going to go for that long walk with the dog that we planned, or we’re not going to, like you just, I think you maybe just lower the standards of like things we would do on a basic night. We’re going to do the bare minimum. We’re both going to see like, okay, could you do this? Could you do this? We’re going to call and help if we need to, you know, but it doesn’t have to necessarily be like, a like, you said wins. Like, I don’t like that word either, right? But like, who? So that it so it’s not like, okay, she is worse off, so I’m just gonna bury my hard stuff, do everything, and she’s gonna do nothing, right? It’s a moment where you can say, Okay, I’m also really tired. Do you think you could do this little, tiny thing, and I’ll do this tiny thing, and between the two of us, we can, like, inch forward. You know what I mean?
Justin: Yeah, yeah. It’s, it’s like, how do we survive this moment? It’s like, we don’t have to every, every situation, every moment, doesn’t have to play out in the like, what is the best way to navigate this situation? How do we just survive it? Get though it to the other side?
Allison: Yeah, exactly. Yeah, for sure. And not know that, not have it be like, this is our new life, right? But like, for this evening, this is how we’re going to get through it. We’re going to forgo this, we’re not going to do that laundry, we’re not going to cook the dinner. We’re gonna inch through it. We’re going to survive through it, we’re going to go to bed, and tomorrow will be a new day, and we’ll be able to do those things, maybe tomorrow or maybe not. You know, I wonder too about looking forward at the week ahead. Because I know there was a while ago where Sean was, you know, when my mental health was not awesome, and he was having all these procedures. And I remember looking at the calendar and being like, there are three big appointments this week, and I really don’t think I can actually handle that. And it felt terrible to be like, I’m gonna send him off to do this procedure without me? But I just was like, I just really don’t think I can. And so, in that moment, what I did was, I was like, okay, there’s this one and there’s this one. I cannot come to both. Do you have a preference of which one? And I think he didn’t. And so, then I said, okay, how about I’ll come to this one and my mom will go with you to that one? And he was like, okay, but I was able to do that because I was able to look at the week, yeah as a whole and know, kind of like, what’s going on. Or sometimes I’ll do like, even little things, like Friday, whatever day that was, Friday I had, I knew I had a really busy day, so the night before, I said to Sean, can you drive Maya to school? Just because I was like, that little thing is going to make my whole day feel better. And even though, typically, I’m the one, because I’m always up and around, and I knew that meant he had to get up and around earlier than usual, I just was like, can you do this thing so that I can do this thing? You know what I mean? So, for me, looking ahead helps, both preemptively, but also because sometimes then my brain spirals into like, I’m always like, what’s coming next? What’s going next? So, if I know, like, oh, he can do this, or I’ll bring in, oh, this, this day is gonna be really busy. So, I just know we’re gonna have a frozen pizza that night. You know what I mean?
Justin: Yep.
Allison: So, I think that kind of piece might be helpful. Yeah.
Justin: For sure.
Allison: I think I feel like we’ve been a little bit all over the place, so.
Justin: Yeah, bring it all back.
Allison: Bring it all back. I’m gonna do my best to bring it all back. So, I think that, to summarize that when it goes beyond an acute situation when it goes into chronic caregiving, which is what most of us are doing, we have to come to realize that it’s not all or nothing. It’s not all the eggs are in the basket of the person we’re caring for, but that we need to save some eggs or distribute, redistribute the eggs so that we have some, but that also the other people in our life have some as well.
Allison: I think we have to realize that some days are going to be all for them and none for us, and hopefully some days will be the other way around. But that we cannot, it’s not sustainable to continue where all the eggs go in their basket. We have to think about what are the things that fill our bucket and build those in. And find, figure out, what are the things that like used to fill our bucket, and are there ways to replicate those, with our person or without our person? And even if our person cannot or doesn’t want to do a certain thing anymore, can we find another way, to do that? And I think what we were just talking about like doing the pre planning of, like, building in some support from our community or from our partner, and to realize that there are some days that we’re both going to be struggling and we’ll just got to get through that day. We don’t have to, like, martyr ourselves, but that we can just like, lower our standards get through the day.
Justin: Yeah. Mmhmm.
Justin: Yeah, I think with the looking ahead at the week thing too. Like you can, if you’re looking ahead and you can see that, oh, boy, this is a, this is gonna be a real doozy of a week, whether that means it’s a lot of appointments or procedures, or, like, you’ve got other stuff, or it’s just very busy, or, you know, whatever it is, like, Okay, can you build something in, somewhere in that week or at the end of the week, to where you can have some time to decompress or do something that is fulfilling for you so that you can survive another week. You know?
Allison: Yeah. And I think the other thing is, like that sort of being open and honest with the person you’re caring for as best you can. Just to be like, hey, I’m this is the thing I’m gonna go do. And you know what? I mean, just to, like, to sort of put the guilt aside, but to, like, have the conversation, about what it is that you need too, and how you’re gonna get those needs filled.
Justin: Mmhmm.
Allison: Yeah. So, supporters. I mean, I think all of these things, it always kind of comes back to, like, supporters, can you take things off of the person’s plate, right? So, you might not know that they have a busy week ahead, but if you know that they do, or if you’re finding something out, what are the things that you can do to show up for them?
Justin: Yep
Allison: I think also for supporters to realize that, again, it’s not just the care it’s not just for the care recipient, but maybe a supporter says, hey, I’ll come sit with your person so you can take your kid on a play date and have time with them. You know?
Justin: Mmhmm
Allison: So, it’s more of the respite care that they might provide so that you can go do something with another person or with yourself, you know? So, I think for supporters, just recognize that there’s a whole, like, a lot of people who need support, not just the care recipient.
Justin: I think another thing for supporters, just to keep in mind too, is that this balance of needs is complicated, and not, just to be careful what you say to the caregiver around that. Like, with you know, you know you’re not doing enough to take care of yourself or, like, just to recognize that there’s a lot of things at play there, and to not maybe question, or just be mindful in your in your conversation with them, how you’re approaching that, I guess.
Allison: Yes. For sure.
Allison: Sure. And, I think to withhold judgment, like if you see this caregiver is at the spa or out with their friends or doing a thing to realize like that took a lot of guts and time and planning and work, and probably guilt for them to go do that. And so like, almost congratulate them on being like, hey, look at you! Do you know what I mean? As opposed to being like, wait, who’s with your person? Oh, they must be doing fine if you’re, you know what I mean? Like, to not judge, but instead, to congratulate them for, like, taking time, you know, to be out there on their own. So, yeah.
Justin: And then to, yeah, be there to offer support, both for in the traditional like, okay, how can we help better support the person who is sick, but also, like, how can I help fulfill the needs of the person, the caregiver? And to kind of widen maybe a little bit what you’re thinking about, as far as, what can I do as a supporter?
Justin: Good.
Allison: And then I just want a quick plug for the ianacare app. I know I talk about that a lot, but, I haven’t said anything for a while. But the iana stands for I am not alone, and it’s an app, free app for caregivers. And it helps. It’s a perfect situation to use it, right? So, you build a team. And so, if I see that the week ahead is going to be really busy, I can say, like, we need dinner on Tuesday and Thursday, or we need someone else to pick up Maya on Wednesday, or someone to shovel the whatever, you know. And so, check it out. It’s a really nice way to help like, harness the energy of your team to be able to get help.
Justin: Mmhmm. Good.
Allison: Alright. Well, thanks for chatting, my friend.
Justin: Yeah, it’s always a pleasure.
Allison: It is always a pleasure. Yes, all right, I’ll see you next time. Okay, all right, bye.
Justin: Bye.
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