Transcript
You’re listening to In Sickness, a podcast about caregiving with Allison Breininger and Justin Bajema.
Allison: Good morning.
Justin: Good morning.
Allison: How are you doing today? How’s your week been since last we talked?
Justin: It’s been an interesting week. I know that last time we talked, Sarah had been having a particularly rough week.
Allison: Yeah.
Justin: And that, I don’t know, there hasn’t been a big change there, so we’re kind of still in that a little bit. My root canal.
Allison: Oh, yeah, your root canal. Yeah.
Justin: That is now behind me. It was, we talked about that as a, you know, self-care thing.
Allison: Right.
Justin: And I’m glad it’s done.
Allison: Yeah.
Justin: I’m glad I took care of something that needed to be taken care of, but I showed up at 9:30 for my appointment, and they told me that I was, that they had forgot to put me on the schedule.
Allison: Oh, man.
Justin: So they were able to have an appointment. They had an appointment for like 1:15 maybe, so then I had to go home. This is like 30 minutes each way.
Allison: Yeah.
Justin: Drive back home, wait around a while, and then go back. And so it was less painful than I expected, but it was also just like very uncomfortable.
Allison: Yeah.
Justin: And just too much drilling and very loud. But that went smoothly, so self-care checkbox there.
Allison: Right, right.
Justin: Which is great.
Allison: Maybe next time, just maybe a little less of an intense form of self-care. I’m glad you did something. Next time, maybe just take it down a notch or two.
Justin: I’ll see what I can do.
Allison: Okay, that’s good.
Justin: Then this past week, so the west has been burning.
Allison: Yeah.
Justin: And fortunately, where we live, there’s no fires nearby. But for at least the past week, the air quality has been just horrendous. And particularly over the last weekend and through the first half of this week, it’s like, avoid going outside.
Allison: Right.
Justin: Keeping all our windows shut, feeling like the air quality inside is being affected by that and kind of feeling like crap for a couple days and having a headache and not knowing, you know, is that because of this? It’s just kind of a whole other thing to add on to everything else.
Allison: Yeah.
Justin: So that was kind of a whole other, yeah, just thing this week. And thankfully, today, it’s pretty much gone. The air quality is in the good range.
Allison: Oh, good. Yeah.
Justin: So I sat outside this morning, had my coffee for the first time in a while, and that was, yeah, that was a really good shift. So.
Allison: Yeah. Oh, I’ve just been thinking about you guys and all the people on the West Coast. And because I just know like the highlight of my day each day is that we go outside and we take a walk. And I get away from this computer and we walk and walk and walk. And I just think, oh, man, if I couldn’t even open my front door. So, oh, I’m really glad that it’s better today. And I hope that that stays.
Justin: Yeah. How about you? How’s your week been going?
Allison: Well, you know, like we say, thing upon thing. So we’re recording this the morning after we found out about Ruth Bader Ginsburg. So it just feels like some days feel like there’s no place to rest my mind.
Allison: Any type of thing I think or category or part of my life or part of my family that I think about, it just feels complicated and that there’s a hard thing happening right now. So it feels pretty heavy. I mean, I think despite it all, the three of us are doing as well as we can.
Allison: But it’s a lot. It’s a lot to balance and to hold on to. This morning, of course, everything in my mind ended up like feeling like, how does this relate to caregivers?
Allison: And this morning, I got a message from a friend I actually went to music camp with in middle school. We still are connected, which is amazing. And she sent me an article about by Nina Totenberg from NPR. And I guess Nina and Ruth were good friends for decades. And that one of the things they bonded over was that they were both caregivers for their husbands. And she sent me this article, and it just was really beautiful and said, you know, I read this and I read about these two caregivers and just wanted to know, let you know that I’m thinking of you and that, you know, that I see you as a caregiver as well.
Allison: And just like that, that little moment, like that makes a huge difference that she thought of me and then took a moment to tell me and to recognize that she gets that what I do over here is hard, just made a big difference. And so I was thinking about how, you know, last time we talked a lot about all the things we don’t want people to do and say to us as caregivers, but that there are a lot of things that people do that are really helpful and make a big difference. And so I thought that maybe today we could talk about what are the things that over the years people have done or said or been for us that have been helpful.
Allison: I think I would say to keep in mind that everybody’s really different. And so something that I might say, I loved it when someone did this, a different caregiver might hate. And so if you’re listening and you hear these ideas, think about the person in your life and don’t just, you know, take them verbatim.
Allison: So I was wondering, like, when I say that, like, what’s something that comes to your mind of something that someone has done or said or been for you or for Sarah over the years that has been, that has felt helpful?
Justin: Yeah, I mean, one of the things, and we talked about this as a way to help in the last episode, is with meals. And so there was a time period I’m not great with, like, when things were really rough, I feel like mentally, I just don’t remember a lot of the details. It was just kind of a long…
Allison: Yeah, survival.
Justin: Right. And so I don’t recall how long this was for, if this was six months, if this was a year, but every Monday, we had a friend who had cooked dinner for us. And I could just swing by on my way home from work, pick it up.
Justin: And then that was taken care of. And so it was no extra effort for me. And it was a day that that was just something that I didn’t have to worry about.
Justin: And so, and just, yeah, for that to be just a regular thing to count on, that was a huge, huge weight to be off that, yeah.
Allison: You know, what I love about that is the, like, because there’s so many details that we deal with every day, and that you didn’t have to be like, okay, what day this week? And is it coming? What time? It was just like, nope, Monday, this is a thing that happens.
Justin: Yep.
Allison: And just like the regularity of that is huge.
Justin: Yeah.
Allison: I think that sometimes people think like, oh, I want to give them a lot of options. But sometimes that makes it feel harder. So I love that idea. I love that. Yeah.
Justin: And then with that, people who have brought meals over the years, if you can do that and bring it in containers that don’t need to be returned, that also is huge because you bring over dinner and now I’ve got a pan that I’ve got to coordinate getting back to you. And that’s a whole other effort.
Allison: It is.
Justin: And even also being willing to just, hey, I’m just going to leave it on your front step just because we may not really feel up to the human interaction at the time, or that just might be exhausting. And so little things like that, even I think we had somebody bring soup over once, and they asked, do you have a pot that we can just pour this into? And then it’s like, again, nothing left for us to do.
Justin: And so there’s little things like that that make those gestures even better.
Allison: Yeah, it’s making me laugh because I totally have a casserole dish of somebody’s from like a year ago or something. And I had it out for a while, and then finally I just put it in with our casserole dishes because I was like, I don’t know when I’m ever going to see her again. And I have her casserole dish.
Allison: So Aminta, if you’re listening, come get your casserole dish. That makes me think about even the type of food. One of my favorite kind of meals that people bring is something like a taco bar or a sandwich bar, something that has lots of different ingredients because that way, for a while Maya didn’t eat dairy and maybe she doesn’t like this thing or Sean couldn’t have the spicy stuff.
Allison: And so things that have a lot of options and so that we could kind of all pick and choose and make whatever it was that we wanted from those options. That was always kind of our favorite meal that would be delivered.
Justin: Nice.
Allison: Yeah. Isn’t it funny how food is such a big, we talked about that last time with the food, but it’s not even so much eating the food itself. It’s just that the work it takes to cook it.
Allison: I have a friend recently whose wife was in hospice, and we sent him one of those DoorDash gift cards. And he’s like, thank you. He’s like, because these kids, every night, they want dinner again. Every night. And I was like, I know, right? It’s like, yeah, it just keeps happening.
Allison: So food, I think, is a really big one. What’s another thing that you feel like people have done?
Justin: I mean, there’s one of the biggest things that jumps out to me, that was just a huge help for me, is three years ago, or whenever it was that we moved in with Sarah’s parents, we’d been living in a condo and the owners contacted us and they’re like, hey, we’re planning on selling this. And Sarah’s bedridden at this point. And we’re like, we don’t want to have to deal with them trying to show it or any of that headache.
Justin: So we basically were like, yeah, we’re going to be moving, we’ll move out. And I think it was, at most, it was two weeks after they told us that we were out. Yeah.
Justin: That was at a time when, I mean, that was just completely overwhelming to me because I was just totally burned out.
Allison: Yeah.
Justin: And so we had friends that came from across the state to help us box everything up or to help me box everything up. Sarah wasn’t really able to help at all.
Allison: Yeah.
Justin: And they did a lot of that. And then when it came time to move, yeah, so many people showed up and somebody had their dad come along with the truck and trailer and somebody else had a trailer. And it wasn’t like I had to coordinate, okay, who’s got trucks and that kind of stuff.
Justin: And we had people help on the first night. Sarah went into the second bedroom and we moved just our bedroom. Just did that piece the next day.
Justin: Or I think then that night, I brought Sarah over and then she could just be in that room there. She had a space there. Well, we just went through and did everything else.
Justin: And we had stuff that went here. We had stuff that needed to go to Goodwill. We had stuff that we stored in my parents’ shop because there wasn’t room for it here.
Justin: And it was just this… Looking back, it was not just that people were there to help physically with the things, but people stepped up to even just take the lead with like, okay, put this stuff here and leading that, coordinating the moving effort itself. Yeah, I would not have been able to make that happen without…
Allison: Oh, for sure.
Justin: And that was friends, and that was family, and that was…
Allison: How did you let them know that you needed that help? Like, how did that even… How did the word even kind of get out?
Justin: I don’t exactly remember. I think it was just a like casting a wide net, you know, sending, whether it’s texting or sending emails to people that like, hey, this is happening. I need people to help on this day.
Justin: And yeah, I don’t know if they did any more coordinating beyond that. But yeah, I just basically put the call out. Yeah, and people showed up.
Allison: Well, that’s a huge piece that I think that caregivers are often the worst at asking for help because we’re used to being the ones that do it all.
Justin: 100%. Yeah.
Allison: And I think that, I mean, that’s a really great model for us, Justin, that you cast the net, right? So you cast the net, and then they showed up, like they showed up in a big way. And I think that people are often afraid to ask for help, like, what if nobody comes?
Allison: Well, if nobody comes, you’re in the same boat you would have been in before, right?
Justin: True.
Allison: But often people are just sitting there wondering, and wondering how they can help, and wishing they could help. And so I think, you know, for us to take your example of, like, just ask, which I know is so hard, it’s so hard for so many of us to do, but that’s a huge step. Because otherwise, you know, if you hadn’t felt comfortable putting that out there, you would have, I mean, like you said, I can’t imagine you doing that all by yourself.
Justin: And I think it was a situation. Yeah, I’m not good at asking for help. And like it was a situation where, I mean, that’s the only way this is going to happen.
Justin: It’s like, okay, I have to do this.
Allison: Yeah.
Justin: And yeah, it worked out.
Allison: Yeah, yeah. It just makes me wonder. So in that huge moment, you sort of knew enough to be like, all right, I have to ask for help.
Allison: And just thinking about smaller moments, right? Like, what can we learn from that to be like, maybe it doesn’t have to be a huge moment to ask for help, you know? It makes me think about years ago, Sean had to have his hip replaced because he, after his bone marrow transplant, he was on steroids for a long time.
Allison: And so both of his hips have actually broken down. One he has had replaced and the other needs to be replaced. But they say it’s like an elective surgery.
Allison: Basically, it’s like whenever he is in too much pain to walk, you know, that’s when he can choose to have it. And he just hasn’t really wanted to have a major surgery. So he has pain every day for that.
Allison: But anyway, when he had the first one, we were in our old house, we had crumbling concrete steps that had no railing. And our back steps also did not have a railing. And it was one of the things they were like, you know, he’s not going to be able to get up and down this after the surgery without this railing.
Allison: And we had very handy friends who rallied, broke down the concrete steps, and built us like gorgeous wooden steps with railings. And then found a way to like on the existing steps in the back to add a railing and just did it, you know, for us. And it was just this incredible thing.
Allison: And so I think it like, you know, the things we’ve talked about so far are like these tiny things, like I’m going to put a casserole on my front steps for you to pick up on a Monday, all the way to like remodeling your house for you, you know, and like, and it’s like everything in between, right? It doesn’t have to be this or that. But also, I think that like people can use their skills and their gifts in different ways.
Allison: Like somebody who is like, I’m a terrible cook. Why I can’t help them with that, but I can build a step, you know, or whatever it is, right? Like there’s got to be so to be creative with that too, and to think about what is your gift as a supporter and how can you use that to help.
Justin: Yeah, and like for us, one thing that some people had done is they told us, you know, we’ve been researching, you know, Sarah’s diagnoses, these conditions that she has. And I mean, that’s not, they’re not doing something directly for us there, but that, I mean, that was huge, just to feel seen and understood and like, yeah, to have it taken seriously to the point where like, I want to understand more of what you’re going through. And there’s, I mean, there’s lots of those instances where it’s not necessarily something that someone is doing or it’s not about the gestures as much as it is about, you know, speaking up, saying something, and just kind of like being there.
Allison: Yeah, that is huge though to have somebody say that. You know, we have had some friends who have like signed up for the Fanconi Anemia Research Funds newsletter so they can stay up to date on the research. I just think that just is such a, to understand and to say like, I see you and I want to learn, this is an important part of who you are.
Allison: And therefore, because it’s a thing that’s about you and it’s affecting you and I love you, I want to understand it more. I used to have a friend, we used to have lots of helping hands, and I would post updates on there. And I would have a friend that before she and I would get together, she would always read all the updates.
Allison: So that when I showed up, she’s like, that way I don’t want you to have to spend one minute rehashing anything that has happened. I want to, you know, if you want to get here and you want to talk about that stuff, great. But that way she was up to date, and she didn’t have to be like, so, how’s Sean, right?
Allison: And it just was like so thoughtful and helpful for me because then she kind of came in with all the information and could ask questions or could, you know, I could talk about it without having to like tell the story over and over and over again. And that just felt like such a gift that she would spend time in that way. Yeah, I think we’ve talked a lot about, you know, words too.
Allison: Like you said, sometimes it’s not a gesture, it’s the things people say. And I will tell you, friend, that you have been an incredible model for me and how to do that. That you are really great at keeping track of dates and things that are happening to us.
Allison: And that the day before, you often say, I know this thing is tomorrow, and I’m thinking of you, and I’m hoping that, you know, da-da-da. And then the day of, I know that this thing is happening today, and as you go into this day, da-da-da. And then the day after, you’re often like, I know the day after is really hard, and I hope you get some rest.
Allison: And those little messages, I mean, first of all, I think keeping track of the events and remembering that is huge. But then those little messages, I mean, they make a huge difference in feeling, in me feeling seen in these moments. And I think you just do that really beautifully.
Allison: So I want to thank you for the way that you support us, even as you are neck deep in caregiving yourself.
Justin: Oh, thank you.
Allison: Yeah, thank you. How did you get so good at this?
Justin: Honestly, I think I learned a lot from Sarah. She’s always been good at keeping track of dates and things like that. And yeah, sending mail at specific times for people and things like that.
Justin: And I think, yeah, I think I picked some of it up from there.
Allison: Yeah, yeah.
Justin: Yeah, and kind of similar to that as far as words and things like that, you know, maybe doing something isn’t, or there’s for whatever reason, you can’t do something to help someone who’s caregiving or whatever. And so, you know, we’ve had people that have sent us mail that has been really meaningful. One of Sarah’s friends, the 35 days leading up to her 35th birthday, each day sent her, like, here’s one of the things I love about you.
Justin: And another time, friends coordinated, like, having just an enormous amount of people, like, all send us mail on the same day.
Allison: Oh!
Justin: And so just those kind of gestures of really feeling seen.
Allison: Yeah.
Justin: Just, yeah, profound.
Allison: Yeah, oh, I love that. We had, you know, Sean had radiation 35 days, and we had a friend who sent him a card every one of those 35 days, which was just incredible. I think that, yeah, those little notes and I think thinking about people, like, it doesn’t have, like, to this day, like, this note I got was, you know, like, from this girl I went to music camp with in middle school, right?
Allison: And so I think those are even sometimes even more precious and to be able to be like, oh, wow, it’s not like my sister-in-law who’s thinking of me. It’s like this random person, you know? And so we have a friend from college who especially did this during radiation and chemo, but still does it now.
Allison: We’ll send a Facebook message that will just say, I’m thinking of you, and, you know, I think you guys are incredible, and da-da-da. And that always says, no need to respond. And that is my favorite phrase.
Allison: Because like we talked about last time, like, we don’t ever want to add something to a caregiver’s to-do list. And so not like he is expecting something, but often, you know, social graces are, somebody sends you something, you send it back, and then off we go. And so just knowing that when he says like, no need to respond, it just feels like a gift.
Allison: It feels like an actual free gift because it came to me, and I don’t need to do anything back. And yet I know that this guy that I knew from 20 years ago in college, who’s in Iowa, is thinking about us. That’s huge, especially right now when we’re feeling isolated and especially when it feels like people don’t understand caregivers.
Allison: And so those little tiny notes can just take a person a minute to do, but can really… Especially, I think, when it’s written like that, because then you can go back and reread it.
Justin: Yeah, and we also had… We got artwork from our nieces in the mail and from friends’ kids. And those were really sweet things to get as well.
Justin: And if the nieces had performances or something, often my mom would have… If there was a DVD available or she would have it, if it was filmed or something, she would bring that to us so that we could watch and kind of be able to participate in some of that kind of stuff. And so just doing a little bit of that work so that we can kind of still feel connected was also really great.
Justin: Another thing my mom did was at one point, she signed us up for like a flower delivery service. It was some local gardener or something. And so every week from like spring to late fall, we’d just have a thing of flowers on our door.
Allison: Every week?
Justin: Every week. And so like we could always have, you know, a little bit of a little bright spot in the house. That was, yeah, kind of a small gesture, but.
Allison: Well, that’s a huge gesture.
Justin: Yeah, true.
Allison: Yeah, that’s amazing.
Justin: That was great.
Allison: I love about that too, that it’s like something to look forward to. You know, like, especially if it’s weekly and you know you have the subscription. I mean, random things are amazing.
Allison: And to know that like, ooh, new flowers are gonna come.
Justin: Right.
Allison: I wonder what kind it’s gonna be. Like that is awesome. I love that idea of some kind of subscription thing for people so that it’s not just a one time.
Allison: Because I think that’s something we have found too. We’ve had a lot of acute moments of surgery, a diagnosis, you know, that kind of thing, hospitalization. But I love it when like something comes, like on a random Tuesday.
Allison: Because it’s just like, just because we’re not in the hospital doesn’t mean that it’s not hard to be a caregiver. And so like these random things that say to me like, I see you. I see that even though you’re not in the hospital, like this is still hard.
Allison: We have this neighbor who is and friend and she is also a caregiver, but she is amazing that every once in a while, our little mailbox and our door pops open and flying through the door comes a little card and she always just like leaves it and runs. And it’s just always on a random day and it’ll like be a little ice cream gift card for a local shop and a little note. She knows that Lays potato chips are my favorite.
Allison: And so I’ll open the front door and there’s like a bag of Lays potato chips just in the door. And it’s just like this little tiny thing to be like, yep, I see you. I’m thinking of you.
Allison: And those little random things can feel so great, you know? Because of course, in the moment when everything’s terrible, it’s nice to get a gift. And sometimes in the moment too, it’s like, I can’t even concentrate on what’s happening.
Allison: What just came in the door, you know? And so the random things are so great.
Justin: Yeah, one, we had at one point just randomly our neighbors washed our cars. They were washing theirs and ours were parked next to them. And so they just washed them.
Allison: No way.
Justin: Yeah, I don’t even know if they really said anything. They just did it. And that was because that’s something I don’t have time for.
Allison: Right.
Justin: But yeah, little things like that.
Allison: That’s amazing.
Justin: Just amazing.
Allison: Yeah. Yeah, that is amazing. I feel like that was like in snow season. I would always like sometimes that would happen that I would look out and be like, somebody did it, you know, like somebody shoveled. Yeah, because like we talked about last time, when you take or we’re not going to give our caregiving tasks away. But if somebody can take a life task.
Justin: Right.
Allison: Like washing a car, making dinner, mowing the lawn off our list, that frees up time and space and energy for us to do those caregiving things. And that makes a big difference. Yeah.
Justin: Yeah, Sarah had a friend once who called us up and was like, hey, I’m going to come over and do your laundry and did that. And for a number of years when Sarah’s mom was coming over to be with her a couple of days while I was at work, you know, she started to just taking care of our laundry those days. And yeah, that’s one of those life tasks that just to have that, somebody else just doing that.
Allison: Right.
Justin: That was incredible.
Allison: Oh, that’s huge. Yeah, we had for a while, I think it was during the radiation that we had somebody who for a while would be like, okay, on Tuesday, leave your laundry bag at the front door. I’ll bring it back on Thursday.
Allison: And then she was like, you know, folding it, all this stuff. I was like, oh my gosh, this is magic. It’s hitting me that both of us have incredible support systems as we’re telling these stories.
Allison: Like, off the charts and support systems. And I know that not everyone does. I don’t know if you saw this, but the other day, I had posted a thing that just said, hey, let’s just all take like one minute today to do something to support a caregiver.
Allison: And I gave a couple of ideas. And then I said, all right, tell me if you did it. And I was just feeling really sad because like very few people did it.
Allison: I was like, it’s one minute, guys. And maybe they did. And I just didn’t hear about it.
Allison: But anyway, there’s this woman who follows Negative Space and who lives in England and is a caregiver, I think, for her father. And she just wrote back and said, I wish I had people in my life who are supportive like this, like I really do. Oh side note.
Allison: So yeah, then your incredible wife, I forgot about that part of the story. Then your incredible wife was like, I’ll send her mail. So now she’s part of the support system because of your incredible wife.
Allison: But, you know, for her to say, to see that and say like, I don’t have anybody in my life who’s going to do these things for me. And I’ve had people say that before, like, I’m really jealous, Allison, because you have an incredible support system. And it’s true.
Allison: And so I’m just wondering, like, if caregivers are out there and they’re listening and they’re like, there is nobody in my life that is going to secretly wash my car and bring me dinner every Monday. Are there things that we feel like caregivers could ask for or do to sort of try to build that community? I mean, hopefully the supporters who are listening are going to be like, all right, I’m on it.
Allison: But I don’t know, what if a caregiver is listening and is like, I don’t have anybody who can do those things?
Justin: Yeah, that’s hard. And I mean, I feel like I can relate to that. Certainly, we’re at a place now where we have a much more robust support system.
Justin: But I think back to those years when, yeah, Sarah was just in bed for all the time. And yeah, it felt very isolating and didn’t really feel like we had as much support. And I know that we did, and for whatever reason, that just wasn’t.
Justin: That didn’t come to mind or something. But yeah, if you’re in that position, I think one thing would be sharing things. Like you talked about people remembering dates for appointments and things like that.
Justin: And so if people know that, hey, we’ve got this appointment or this procedure coming up, that is giving them an opportunity to know a little bit about what’s going on and maybe do something. And that’s hard if, I don’t know, if you don’t have as many people around you that, yeah, I don’t know. But some of these things are just, you know, it’s not necessarily people doing things, but it’s people saying things.
Justin: And so it could be, you know, it could be your internet friends, right? You know, just, you know, sending messages. But I know, I do think that for me, when I have been able to not necessarily just ask for things, but just be able to talk about how things are going, that at least I think opens a door for people to see the potential for a need.
Justin: I don’t think that’s the solution for all of this, but that’s one thing that I think helps for me.
Allison: Yeah, I think that’s huge. I think that, I sort of think about this as like these like train tracks, these like parallel lines of like there’s the caregiver and then there’s the supporters. And that sometimes there are supporters who don’t realize the needs that the caregiver has.
Allison: And that that is often because caregivers, you know, we’re not very good about talking about ourselves. We, you know, we are not very good at asking for help often. And so part of it is that is getting the caregivers to a place of comfort maybe or pushing themselves to to tell a little bit more about like what their life is like.
Allison: And to then ask for those things or show that the need is there. Because otherwise, if people don’t realize what you’re doing there, they wouldn’t even think to wash your car. They wouldn’t even think to drop off dinner.
Allison: So I feel like that’s half of the battle. But then the other half is that supporters need to be responsive and ready so that if they see that and like, oh, I didn’t, now I know that Justin has a thing in his life, then they’re ready to be supportive. And so it’s sort of a double track, which is I hope that in our conversations, we get to help both pieces.
Allison: But I do think that there’s part of it is the caregivers just saying, painting a little bit about the picture of what their life looks like so that people even recognize that that is the need, which I know can be hard. I know that can feel really vulnerable. And I think that if caregivers feel like they don’t feel comfortable sharing their story, they can share ours.
Allison: You know, they can send this podcast out or whatever that is so that they maybe personally don’t have to say those vulnerable things, but they can let us be the voice if that feels better for them.
Justin: Yeah, because that can be hard.
Allison: Yeah.
Justin: For sure.
Allison: Yeah, it can. Do you have like a favorite, an all-time favorite thing that somebody has done, said, been for you?
Justin: I don’t know about an all-time favorite. I mean, I talked about the move. That was a big one.
Justin: Another big thing was, so we talked about several episodes ago about how like on appointment days, we can never just be the spouse. And so when Sarah had her central line put in, and that’s been, I don’t know, I’m bad with dates, maybe two years ago. I don’t know, maybe it was more, maybe it was less.
Justin: And I don’t remember if she offered or if we asked, but my mom took us to that. And so I didn’t have to worry about traffic. And she just dropped us off at the front of the hospital and parked.
Justin: And whereas I would have probably just sat in the room waiting for Sarah to come back, we went and had lunch at the cafeteria. And then when Sarah was done, I could just focus on Sarah. She went and got the car.
Justin: You know, I was able to go home, you know, driven home. And so it wasn’t… I still had a lot that I was doing that day.
Justin: But to have some amount of those caregiver responsibilities offloaded in that moment allowed the spouse part to have more space.
Allison: Wow, yeah.
Justin: And that was… yeah, that meant a lot. Yeah, and that’s not something that any supporter can necessarily do for a caregiver.
Justin: There’s some amount of being comfortable with that person and all of that. But yeah, that’s something if you have close friends and family, that’s something to think about and potentially offer up.
Allison: Yeah, for sure. Now, I love that because… And I love when you said this space for the spouse, right?
Justin: Yeah.
Allison: But again, I think it just keeps coming back to when more logistical things can be taken off of our plate, we’re able to do the other things, right? And so if your mom got to worry about the car and the traffic and the parking and this and that and whatever, that was one less thing for you to worry about that gave you that space. And I think that that’s huge.
Justin: Mm-hmm.
Allison: Well, I think that we both… I mean, I think this has made me realize, too, that, like, we’re pretty fortunate that we have the support that we do from a lot of people. And I will say that I also count you and Sarah in that.
Allison: And that even though we’ve never even met in person, I feel like you two are some of our biggest supporters, and we are so grateful for this friendship that we have as well.
Justin: Mm-hmm.
Allison: I hope that hearing this helps some caregivers maybe ask for some specific ways to be helped as they feel comfortable, and that I hope that supporters themselves can think of some of these just like simple things. I think a thing to remember is the more sort of specific and easy that you can make it, the better. So again, like your thing like dinner will be ready on Monday, and you don’t have to do those things.
Allison: And so just as you’re offering things, supporters to think about if your offer is adding something to their plate or taking something away.
Justin: Yeah, and I would add to that if you offer something, like for example, someone would call us from the grocery store, hey, do you need us? We’re here. Can we pick anything up for you?
Allison: Yeah.
Justin: And the first time that happened, like I was not prepared to what do we need.
Allison: Yeah.
Justin: So, you know, it’s like, I don’t know. And so if they, you know, if your offer isn’t accepted the first time, don’t take that as like they don’t want the help.
Allison: Yep.
Justin: Like it could just be that they were caught off guard. And if you ask again, they’ll probably have a little better sense of what’s needed there. So don’t, yeah, don’t say, well, I asked and they didn’t need anything.
Allison: Never going to ask again. Right.
Justin: For sure.
Allison: Yeah. I think that’s really good advice. Yeah.
Allison: Or I think that and then the like, no pressure or no need to respond piece, right? So that we don’t get it and be like, oh, I don’t know. I have to talk to them about the groceries, right?
Allison: Yeah. Yeah.
Justin: Yeah.
Allison: Good. Well, I’m grateful that I think just even like, the process for me of thinking of all the things people have done for me is making me feel really, really thankful today. And also in sort of inspiring me about like, what are the other ways that I can reach out? Because I know a lot of caregivers. So how can I be more supportive of them too? So yeah.
Allison: Well, thanks for talking.
Justin: Yeah.
Allison: Let’s hope that the next two weeks, we both have a couple of sweet spots in it, maybe, that we can think about how people supported us, and we can both also continue to be support for other caregivers too.
Justin: Yeah, for sure.
Allison: Yeah. All right. Have a good week.
Justin: You too.
Allison: All right.
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