Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Good morning, Justin.
Justin: Good morning, Allison. How are you doing today?
Allison: Ooh, well, since last time I saw you or talked to you, I know I had mentioned in the other one that my 98-year-old grandmother was just moments away from the end of her life, and so she passed away. And so we had a whirlwind trip where the three of us flew out to Rochester, New York, from Minnesota, and for a funeral, and it was a lot. It was a lot.
That’s where I used to go out there as a child in the summer to see, oh, that’s where all my cousins are and everything. And so it was like a pretty great but intense reunion of relatives that we figured out that we hadn’t all been together in 18 years.
Justin: Oh, wow.
Allison: Mostly because of us, which we could do a whole episode on that. But it was realizing a lot of people got together, but, oh, those Breiningers can’t travel. And we’re the farthest away.
So it was a lot. It was a lot of grief and travel and managing all of the things. And again, here’s probably a whole other topic, but something I noticed, and I’ve noticed this about myself at funerals in the past, is that when I find myself in a caregiving role at a funeral, I find that I don’t have the chance to mourn or cry when I’m caring for someone else at a funeral.
You know what I mean? I even remember my first grade teacher died when I was in middle school. And I remember all of us kids going to the funeral, and whichever friend of mine it was that was next to me started weeping.
And it was sort of like I just jumped into caregiver mode in that moment. Do you know what I mean? So anyway, that happened here as well.
And it just is another angle of caregiving that I think–I go there quickly. Even when it’s not a medical thing, it’s sort of like that’s where I sort of go to. So another topic.
We’ve got so many things we could talk about. So we’ve had, we’re just trying, we got home on, I don’t even know anymore, Tuesday, Wednesday. So we were just sort of trying to still recover from that and then get ready for our next trip, which is to Indiana for Christmas.
So trying to just kind of lay low and recover from that. But that’s what’s going on here. How about you?
Justin: Hanging in there. Yeah, I had a birthday.
Allison: Happy birthday. That’s awesome. Happy birthday.
Justin: Thank you. That was exciting. Took the day off from work, went out and saw some birds.
Allison: Nice.
Justin: Sarah and I went out for dinner, had some cake with my parents. And it was, yeah, it wasn’t a big busy day, but it was a nice, low-key celebratory, I guess, kind of way. I’m not great at allowing myself to be celebrated, I think, but it was, Sarah’s always good at like, we gotta do something.
So I appreciate that.
Allison: Yeah.
Justin: She kinda keeps that in mind, but it was nice. It was a good kind of day to, yeah, especially going out and seeing the birds, unplugging from work and all of that, and just kind of like, I don’t know, being out of nature and just kind of taking it all in.
Allison: Yeah.
Justin: It’s always just real restorative.
Allison: Yeah. Yeah. Can we just take a second, because just to hear you say, oh, and then Sarah and I went out to dinner. I mean, again, like, you guys can go out to dinner now?
Justin: Yeah. That’s a huge deal. It’s a huge deal.
Allison: Like, it still is sort of–jarring is like a weird word to say, but you know, like jarring to me to hear that, because you would have never said that before.
Justin: I mean, I think it was within, I don’t know, the last, I don’t know, maybe 18 months or something, that it was, that we even did that really for the first time in probably years, I guess.
Allison: Right. And it’s not just pandemic. Like, it’s like health, like you couldn’t have.
Yeah.
Justin: Exactly. Yeah. That’s a big thing to celebrate.
Allison: It’s a big thing to celebrate. I know we’re supposed to be celebrating you, but also we’re celebrating the fact that you can go out for dinner with your wife.
I was talking to someone the other day who just found our podcast, and she’s in early episodes. And the person in her life that she’s caring for has some of the same diagnoses as Sarah. And I had to, you know, she was in the early episodes, it was like, it’s just like Justin and just like Sarah.
And finally I had to say, I have to give you a spoiler alert to your friend. I just have to. I was like, if you should just skip ahead to the end, to these more recent episodes, because Sarah’s doing really great right now.
And so it was just cool for me to realize that, you know, even in the course of this podcast, how far she’s come and how you wouldn’t have even guessed that that was an option when we started talking. It just felt like, no, this is the way it’s gonna be. And that you’re, she’s in a totally different place now than she was when we started.
Justin: Yeah, I think it was two Christmases ago, I talked about how we were gonna try to go see these drive-through Christmas things, and it was horrible traffic, and it was a disaster, and it was like hours in the car, and I was freaked out because that was the longest she had been in a car since early on in her illness when we drove to Seattle to see a specialist. And we drove six hours a month ago to see our friends in Spokane.
Allison: And stayed overnight for two nights.
Justin: And stayed overnight for two nights. Like, yeah, it’s wild.
Allison: It’s wild. I just, yeah, talk about celebration. I just think that I’m never gonna let you just sort of skim over things like, and then Sarah and I went out for dinner.
Because it’s too big of a deal to just skim over that. It’s a huge, huge deal.
Justin: Thank you.
Allison: On the same wavelength, real quick, I should just say that we, the last couple of Sean’s appointments have just been so slick that it’s almost, I hate to even say it out loud, like we went to the oral surgeon on Friday, and she almost always, she’s very, very proactive about stuff. So she almost always is like, there’s a thing, or there’s a thing, or we’re gonna biopsy this thing. And she was, everything looks beautiful.
And we’re like, really? The last three big appointments with people who usually find things were like, everything looks great, go home. And we’re like, really?
Okay, let’s go before they change their mind. So let’s just knock on all the wood. I don’t really believe that, but I’m just going to cover all the bases that both of our families are doing well in this moment.
So let’s just enjoy this moment.
Justin: No, thank you for that reminder. It’s important to do.
Allison: So what are you hoping to talk about today?
Justin: Right. So something that’s been kind of rolling around in my brain for the past couple weeks as an idea to talk about is the whole idea around acceptance. And I think that a lot of times early on, specifically in our caregiving journeys, and of course, I think it’s something that, like a lot of things, comes back around a lot and resurfaces, is there’s this sense of, for me, I remember this a lot, is like, we just got to get through this, and then we’ll be on the other side.
And there’s, we cling to the life, the path that we were on before whatever the incident was, or the onset of our person’s illness. And it’s really hard and difficult to make that transition to this is now the path that we’re on. And that’s hard and difficult.
And it’s like, there’s grief there. I mean, acceptance is like the five stages of grief. It’s the quote unquote final stage, but also that’s not a linear process.
That’s a whole messy, you know, convoluted path that loops back around again and again. But yeah, I mean, I think the metaphor I think about a lot with this is, and I think it’s because early on, I spent a lot of time when Sarah first got sick, fishing up in the mountains, in the river. And that’s kind of where I spent a lot of time thinking and processing and like, what is this path that we’re on now?
And so I think about being in the river and there’s this current that has swept you away from this, you know, the path that you were on. And there’s such a strong drive to fight upstream, to go back to, to try to get back to where things were and holding on or just like trying to stay still. And when you’re standing in moving water, that’s exhausting to try to do that.
And so I think as caregivers we’re in that place, and that’s wearing us down. Trying to hold on to that previous path that we were on. And I think that wears down on us physically and mentally.
And so it’s a difficult transition to get to, but to get to a place where you can accept the path that you are now on, your life is taking a different direction. And so I thought we could talk about what that looks like, because I think it can be thought of that, okay, if I’m accepting this life, then I’m admitting defeat or giving up. And that’s not kind of what I’m talking about, because I’m not saying that you’re not gonna fight for finding the best doctors or doing research to try to find new treatments or solutions or cures, but it’s the other thing that I think about.
And this, more recently with my own mental health, this has kind of been a mind shift, instead of trying to, this is just a thing I’ve got to get through and then we’ll be on the other side of it. Thinking about that is more like, how do I exist alongside this? How do I make life as beautiful as we can with my person being ill or sick and me caring for them?
How do we make the most of this path that we’re now on?
Allison: Yeah.
Justin: So that’s kind of, that’s a lot. But yeah, what are your, what’s your relationship with acceptance, kind of in your own caregiving journey or kind of what are your thoughts on this?
Allison: Yeah, well, it’s funny that you bring this up because I did a webinar this week for ianacare on burnout, on caregiver burnout. And one of the slides…the content that they had created was that one of the reasons caregivers are burned out is because of lack of acceptance. And I was like, huh, it kind of struck me, like I had to kind of go back and read it a couple of times.
And actually I pulled it up here just to, so it says like, lack of acceptance, I didn’t choose to be a caregiver.
Justin: Right.
Allison: Right. And so it says this constant resistance to your situation, feeling like you have no choice or control. And it was interesting to me because I had never thought of that as like a cause for burnout, but of course it is.
Because if you think about all the energy you’re spending, like you said, I love that analogy of trying to like walk or swim against the current, how much energy we spend on that, or the energy spending on like, this isn’t happening, or this isn’t, or da, da, da, da, we’re gonna…it’s exhausting. And so it was an interesting perspective for me this week to see that slide and realize this internal battle of fighting acceptance can lead to burnout. And so some of the things that they had put in the strategies are sort of like, is there value in your new normal?
Can you adjust your goals and your timeline? I like to think of it as what season are we in?
Justin: Right.
Allkison: Right? Because I read this book a long time ago, Jen Hatmaker, and she was talking about people with little kids, and she’s like, you know, you can’t, in this season, when you have little ones, maybe you can’t go to the book club, and you can’t da, da, da, but there’ll be a season when you can, right? And so I like to think about it as like, okay, what season are you in?
Because even if we say, like you and I are in a pretty sweet caregiving season right now. And so there might be things that we are able to do. Like you were able to go to Canada to go birding on your birthday, right?
And in a different caregiving season, you might not have been able to do that. So to think of it as seasons. And so one of it is okay, there are things that I used to be able to do, or like, and before maybe I was on the PTA or that I did this, or I volunteered, or blah, blah, blah.
That now I’m just, you know what? My time and my energy is somewhere else, right? But I had to be able to say, I’m not gonna do those things anymore.
That is not the season I’m in anymore. And I might at some point, even within this caregiving life, if it’s quiet or a different point. But like right now, I can’t, and that’s okay.
But I think that it’s sort of the letting go of what it used to look like. That can be really hard. Especially because almost, I mean, I’m trying to think, are there any situations where someone’s sort of jumped into this intentionally, right?
Like it all comes out of nowhere.
Justin: Well, something that I was thinking about with this is I think that there could be an interesting, like guest opportunity for the podcast, because there are people who, in a spousal sense, caregiving perspective, like you meet someone who’s chronically ill and fall in love and get married, and they’re like, you know, from day one, this is the path. And so there certainly are caregivers who are in roles where this wasn’t a sudden shift.
Allison: Good point, yep.
Justin: And I think it would be really interesting to talk to somebody like that, because so much of what we talk about because of how our journeys, and a lot of, and I think most caregiving journeys, are like something happens, or there’s maybe a kind of gradual decline. But yeah, it would be interesting to hear from someone who maybe this acceptance piece wasn’t as abrupt or like an arresting kind of feeling.
Allison: Well, I think in a way, the acceptance is more abrupt in that situation, because it’s more of a decision, right? It’s more of a I met this person, I love them, and they have this thing, I’m deciding.
Justin: Yeah, right.
Allison: Whereas for us, it’s a little more nebulous, like it sort of happens over time. And so when I thought about acceptance, I was also thinking about the piece of, sometimes it takes caregivers a long time to even realize that they are a caregiver.
Justin: For sure, yeah.
Allison: And there’s that acceptance of even like, oh wait, I guess as I’m changing this IV or I’m doing this thing, whoa. And I’ve heard people where they have this almost moment of holy crap, what is that, you know, what is, I guess I’m a caregiver, you know? And I think that even that piece of accepting that you’re in a new role is a part of it.
And then there’s the piece of like, this is my life. This is our life, and our life is really different. And then to the very grief of oh wait, we pictured this and this and this and this, and that’s not gonna happen.
Right, and so how long do we keep fighting for can it still happen, or can I still do the things? And at what point, and how do we find that balance?
Like you said, like, it’s not giving up.
Justin: Right.
Allison: But how do we find that balance of acceptance versus sort of, I just kind of resigned myself to this. You know what I mean? What does that look like?
Justin: Yeah, I think that there’s…I mean, part of it, I think, is finding kind of the balance between what can we control and what can we not control. So the illness or condition that is at work within our person’s body, we can’t really control that. We can, you know, control directions we take for medical care or for doing things to keep them comfortable and healthy.
We can have some control there. So I think there’s part of that balance there. But I think it’s really, I mean, we’re talking about, yeah, you accept this role, accept this new path, and then, I don’t know, I don’t wanna make it sound easy.
Allison: Oh, right.
Justin: Because it’s a difficult, difficult process to go through. And it’s one that I know for me, it loops back around.
Allison: Yeah.
Justin: And so I don’t remember what your original question was.
Allison: Neither do I, it’s fine.
Justin: But yeah, it’s, so how do you, you know, get from this is all happening, and I’m really resisting this new path or clinging to this previous life, how do you get to accept that this is the path that I’m on? Go ahead.
Allison: Yeah, I was gonna say that, I think the original question is about that balance, right? So like you said, accept. Because I could see, how do you accept it without having it be, it’s taken over, or I’m giving up or… I think about people who use toxic positivity for themselves.
Right? Like, okay, well, it’s just fine. We’re gonna, it’s all gonna be fine, and it’s not that bad.
And you know, and there’s something, I can imagine that there might be something therapeutic about that, about staying in that head space of it’s gonna be fine next week, right? But also that you’re fighting upstream, right? And so how do you, in a healthy way, accept it without it just sort of taking you down?
Do you know what I mean? Because if we go back to your water analogy, I can also just imagine just lying there and letting it blow you down.
Justin: Letting the current take you.
Allison: To let it take you away like that. So how do you, where’s the, you know what I mean?
Justin: Yeah, I think that’s a good thing to consider here. One, I think maybe if one step in that balance is like recognizing that this clinging to the former life is causing additional suffering for you. And so kind of knowing that and kind of acknowledging that some of those, whether it’s thought patterns or whatever is causing, that’s causing you additional grief, that’s causing you additional pain.
If you can kind of recenter yourself in those moments and ease some of that suffering, there’s a little bit of balance there. That’s kind of one area. Whereas, it’s not the, oh, my person is diagnosed with cancer and that’s it now.
It’s not that. And so I think it goes back to recognizing the spheres that you realistically have control over. And so, this thing happened, we can’t change that.
We can’t go back to how things were. We can’t go back to the path that we were on. Sarah and I can’t go back to this future where we were gonna have kids.
And we can continue to mourn that and we can continue to feel, we will continue to feel the pain and grief around that. But we are on a different path now. And so I think that it’s not about giving up.
It’s not about resigning yourself to, well, this is our future now. There’s nothing we can do about it. To I think what I mentioned earlier, like, okay, this mind shift from, this is a thing that we have to get through, and then on the other side, we can get back to life as it was.
Or like, just feeling that pull back to, I wish things were like this, back how they were, I wish things were back how they were. And that’s okay to feel that way, because obviously we do, and it’s hard and grief is complicated. But for me personally, the shift is to how do we exist alongside this thing?
And like I said, how can we, in spite of Sarah’s illness, in spite of the limitations that that brings, how can we carve out beauty and wonder and joy within those constraints? And also, we’re going to keep like, what are new potential things that could help her? You know, it’s not, we’re not saying, you know, resign yourself to the status quo and not fight for change and fight for treatments and diagnoses and new medical opinions and all of that.
Allison: Well, think even if you had two years ago said, this is the way it’s gonna be, it’s never gonna be any better. And now it’s way better.
Justin: And I think that I probably two years ago felt like this is how it’s always gonna be, it’s never gonna get better, but it has.
Allison: Right. You just, so much of what you just said was like, poetically beautiful. Thank you and wise.
Man, this new age of yours is like really– this birthday. It’s done something. It’s good.
It’s good. A word that I pulled from what you said, it was recenter. And so I love this analogy we’re using because the fishing that you did, correct me if I’m wrong, was fly fishing, right?
Justin: Correct, yeah.
Allison: So from watching A River Runs Through It a long time ago, that’s my context for fly fishing.
Justin: Perfect.
Allison: Right, so you stand in the water, correct? So I think that thinking about it that way, we sort of pictured pushing against the current, and then we talked about lying down and letting it swoop you away, right?
And then you just had to recenter. And when you said that, I pictured you or a person standing, standing in it. And I think that the beauty about that is when you’re standing in it, you can look, I’m trying to stick with the analogy, you can look upstream, right?
Which is, I guess, your past. You can see it and be like, yep, that’s where we were. You can look downstream and be like, oh, look, that’s where we’re going.
And then you can stand in the middle of it. You can look around you, you can see the beauty of where you are right now without being pulled in either direction, right? You’re just in it.
And I think it’s that presence, that being present in the moment that makes the difference, right? Acceptance is like, if we don’t accept it, we’re like living in the past, which is really just not serving us. And so it’s like the being in the middle of it, being like, yep, there’s the past on one side, there’s the future on the other side, and here I am in the middle, and there are beautiful things about this space that are different from the space upstream, that it might be different from the space downstream, but I’m gonna find things about this space and be centered here with my feet anchored in the water.
Justin: Yeah, you just took another thing I was gonna say. We both arrived at a similar spot. I mean, you even use the same word, like present or acceptance, it can be this anchoring thing, in that I know that for anxiety, that’s something we can relate to.
Going back to your breath, maybe, or something is this anchor that in the moment can help kind of ground yourself when you’re feeling overwhelmed and anxious and something. And it’s not like you do that, oh, anxiety, we’re good now. It’s a continual practice, right?
And so I think in that sense, accepting where we are in this moment can be this when you’re feeling overwhelmed or caught up in the past or this potential future, because also you don’t know what the river does around the bend. Like that can feel overwhelming, but if you can focus on, I accept where we’re at right now in this moment. And then like you said, how can we carve out beauty and be present here?
Because I think that when we’re so focused on either this past that we wish we were still, this past path that we wish we were still on, or looking ahead at a future and just feeling resigned to this is how it’s always gonna be, we don’t give ourselves the opportunity to experience and be with the moments that are happening now.
Allison: Right, right.
Justin: And I think that when I’m talking about acceptance, that’s really, I think the main thing that it feels like is, okay, this is where we’re at right here. Let’s be present with where we’re at right now, because otherwise you’re missing out on life, because life is right now.
Allison: And you should just go into bumper stickers or something. Yes, you’re on fire today. Yes, I mean, I think that like even the thing you said earlier, like, oh, I’m gonna go out to dinner, right?
If you were stuck in this, like, our life isn’t what it was 10 years ago, or our life isn’t what I thought it was gonna be, you wouldn’t be able to enjoy the fact that, whoa, we just got to go out to dinner, it was lovely.
Justin: Yeah, right.
Allison: You know? And on the flip side of that is, you know, it’s easy for us to say, because we’re both in pretty sweet seasons. You know, if you’re in a terrible season, right, that’s really hard.
And so, actually, and I think it’s maybe still my little profile picture on Instagram is this, a friend of mine at one point made this cross stitch thing for me that I treasure, and it’s on my mantle. It says, this is terrible, keep going.
Justin: Mm-hmm.
Allison: Right? And so I want to say too that like, sometimes you’re in the middle of it, and you’re just, this is the worst.
Justin: Yeah.
Allison: And it’s hard to be like, I don’t want to be present.
Justin: Right.
Allison: Right? But at least you’re in it, right? There’s something about being like, yep, this is terrible.
Yep. And I’m going to keep going. And maybe down the bend, something will be different.
But right now, this is the moment I’m in, and it could be a terrible moment. It could be a great moment. It could be a whatever moment, but I’m in the moment.
You know, I’m in it. Yeah.
Justin: Yeah, I think, I mean, that brings something up that I thought of here. So if you’re in a really difficult, really hard, terrible season, if you’re focused on the past or looking to the future, you’re not focused on what you as a caregiver, as a person, need in that moment. And so maybe part of accepting this moment that you’re in or this season that you’re in is allowing yourself to in that space be, okay, what do I need to do to take care of myself amidst this?
How can I be present with me? What can I do to help make this or set myself up for the long term on this? Or what do I just need to get through today?
To be able to be present and listen. And that’s kind of where acceptance is this thing that you kind of continually return to kind of as I’m thinking about it. It’s like, you know, it’s a daily or whatever thing.
It’s okay, this is where things are at right now. And then move from that kind of posture, is that?
Allison: Yeah, it does. I keep thinking about this woman that I saw once at the hospital at the valet thing. Clearly she had been there multiple days.
And the valet guy was like, do you know that we have weekly passes and we have monthly passes that you can save money on your parking? And she was like, no, nope, nope. I don’t need that.
I don’t need that. We’re just, we’re gonna get out of here any day. And it just really, and I don’t know her story, right?
But I just thought it was this moment of, clearly she’s been here enough that even the valet guy has gotten to know that she’s been here this many days. And he’s just trying to save her money, but she just can’t even accept. And I get that, that by signing up for a weekly pass or a monthly pass, that’s saying we’re gonna be in this hospital for a long time.
And she just was not ready to go there. You know, and some of it is like self preservation, right? But I just, that moment that was years ago, and it just really stuck with me, cause I thought, oh, she just, she can’t even get herself to say we’re gonna be here for a week, you know, even though it’s kind of clear that that’s gonna happen.
And so, you know, and again, sometimes we need to have self-preservation, and maybe buying that weekly pass would have just made her crumble, because it would have been too much acceptance, right? But maybe, how much energy is she spending, right? Pretending that it’s not happening, when really just being like, okay, we’re here for a week, let’s figure out what that means.
And what would that acceptance have brought for her? And how would that have allowed her to care for herself? As you just said, you know, to be okay, if it’s gonna be another week, now I have this parking pass, and now I’m gonna do this, and now I’m gonna do that, as opposed to living in this nope, not happening.
You know? Mm-hmm. And I think even, you know, we talk about self-care, but also about asking for help, right?
Justin: Right.
Allisn: If we’re telling everybody, it’s fine, fine, fine, fine, you know? And we haven’t accepted that like, it’s maybe a bigger thing, or it’s a whatever thing, like an ongoing thing, then people aren’t able to help because they’re like, oh, well, she just says it’s fine.
Justin: Yeah, that’s a good point. Like, if you haven’t accepted that this is the new path, you’re not going to necessarily be as proactive or open or whatever to seeking out help or being open to offers for help. Yeah, and that’s one of those things that is really going to help sustain you in the long term, is having that.
Yeah, that’s a good point there.
Allison: So this morning, when I was thinking about this word acceptance, I had this song. Are you a Hamilton fan? I can’t remember.
Justin: I’m familiar with Hamilton, yeah.
Allison: Familiar, okay. You know, we’re like diehard Hamilton fans over here. So there was this song, my very favorite song from Hamilton that makes me cry every time was in my head.
And I kept being like, why am I thinking about that song today when I’m thinking about acceptance? And so I listened to it, and then I was like, this is why. So I’m gonna just read you a couple of lyrics from the song.
So spoiler alert for those who haven’t seen Hamilton, do I spoil it? Yes.
Hamilton’s son dies in a duel, and he knows about it. And then his wife is like, but he had cheated. Anyway, so much backstory.
He had cheated, his wife is not speaking to him because he had cheated on her. And then their son died, and they’re both mourning, but she’s not talking to him because he had cheated on her, okay? So, and this, I love this because this also kind of goes with this water theme.
So it says, there are moments that the words don’t reach. There is suffering too terrible to name. You hold your child as tight as you can and push away the unimaginable.
The moments when you’re in so deep, it feels easier to just swim down. The Hamiltons move uptown and learn to live with the unimaginable. And so it was like this living, learn to live with the unimaginable.
I was like, oh, that’s why I’m thinking about this song this morning. Because it’s like, none of us would have imagined that this was gonna be our life. If you had talked to 20 year old Justin and Allison and been like, okay, when you’re in your 40s, you’re gonna have a podcast about caregiving.
We’d be like, what are you talking about? But we need to learn to live with unimaginable somehow. And that’s this acceptance piece, is how do we do that?
How do we do that in this beautiful way? And part of that, it’s in another song from Hamilton that she says, I’m not afraid, I know who I married. And I actually have that on a little sign in our bedroom, because the whole song is like something about like, it’s a miracle that you’re even alive still, just stay alive.
And I’m like, oh my gosh, this song was written for us. So part of it is that, I’d like to be like, okay, I’m not afraid. I know that I married this person.
This is not the path that we thought. But we have to learn to live with this unimaginable thing that’s happening to us, and to spend our energy in other places, right, than this fighting upstream thing.
Justin: Yeah, yeah, that’s beautiful. One thing I want to say is, we both are in this position where we are caring for the person, we’re caring for the person that we care about more than anyone else in the world. Like, we are with our person, and we are, we love our person, and that is a huge thing that we have going for us in our caregiving paths.
And I imagine that if you are in a situation where, I don’t know, maybe you’re caring for an aging parent, and you don’t have the greatest relationship, or there are situations where it’s like, there are other levels of having to accept what’s happening, then I’m sorry if that’s you, and that that’s like the additional levels that you’re dealing with. That’s got to be really tough. And so I hope that there is still something in what we’re saying that can resonate and still, yes, your path maybe is different and painful in other ways, this shift, but hopefully that, at least in moments, you can still figure out or wrestle with living with this new, yeah, or learning to live with this unimaginable thing, as you said.
Allison: Yeah, I think there’s layers there, right? So part of it is just the disease itself. And I think for our friends and listeners who are caring for someone who has dementia or Alzheimer’s, right, that’s different, the accepting of this person is physically still here, but the person that I know and loved and married or am the child of or whomever, like they’re maybe not present any longer, right, the accepting of that.
Or like you said, like maybe they’re in your relationship or with your parents or your spouse or whoever it is, maybe it was not a positive relationship to begin with. And I know there are people who didn’t have a good relationship with their parents, and now they’re caring for their parents, and they’re having to accept that this person that maybe never did treat them well, like in their childhood, now they’re caring for them, right? And so there’s lots of layers.
I think we mostly just talked about the accepting of the, sort of the reality of being a caregiver. But you’re right that there’s a lot of layers of acceptance, and each situation is really different. I think about our friend Liz, who was on one of our episodes with her four kids, and if anyone’s following along with her, her second child, Gianna, who is Maya’s good buddy, is really struggling in the hospital right now.
And Liz has talked openly, you know, about how things like, her kids will never leave her, you know, like her kids will not ever be independent, right, live independently, that she will likely outlive her kids. You know, like, I know that I will almost definitely outlive Sean. You know, I mean, there are things like that.
There’s all these other deeper levels within the acceptance as well. And so it’s not just like, whoop, checked it off. I got to accept that.
It’s like to dig into, and maybe that’s a boardroom thing to be like, okay, boardroom, who’s showing up? When we think about what we need to accept, what are all the things showing up today, the nuances of that, and how much energy am I spending fighting these? And is there a way to be able to, like you said, re-center myself?
So that I’m not denying it, but I’m not giving into it. I’m somewhere in the middle.
Justin: Right.
Allison: Yeah. Is there anything, you know, this is always the place where we talk to our supporters who are listening. And I’m just trying to think about what that is like, or how supporters could be helpful.
Do you have any thoughts?
Justin: Yeah, I was thinking about this a little bit. I think one area is like to be a listening ear.
Allison: Yeah.
Justin: Because I think that there is a lot of processing that as a caregiver, you’re going to have to go through. And one thing that I think will really help is talking about it.
Allison: Yep.
Justin: And so if you’re a supporter who has that kind of relationship with the person you’re supporting, like to be that listening ear and to listen and let them talk through all of this stuff without trying to give them unrealistic expectations, like, oh, it’s going to get better or to not… Yeah, and to not try to make them feel like if they accept this role, that that’s giving up, to not reinforce that, to not bright side or whatever, or just to listen and to be with them along this journey, I think is a big one.
Allison: Yep. Yeah, I mean, I think it’s all the things we’re always saying to the supporters, right? And I think, yeah, if you hear a caregiver who has sort of come to accept it and has said, like, no, this is my reality, to realize that it probably took a lot of work for them to get there.
And so don’t say, oh, no, no, no, no, it’s fine. Oh, no, maybe you will. Oh, maybe this, you know, like, honor where they are.
And if you hear them bright-siding, to be able to say, you know, if you want to have a real talk about this, I’m here for that, too, you know? Because I just think so often that caregivers are afraid to say their thing because they have been bright-sided. Quick side note that my mom said she went in for an appointment the other day and that the nurse was making small talk and said, How are you?
And my mom said, Well, I just spent two weeks at the bedside of my dying mother-in-law and then at her funeral and just got home. And the nurse said to her, My daughter’s ferret just died.
Justin: Oh, wow. Oh, good.
Allison: Can you even? It’s like you can’t even make that up.
Justin: No.
Allison: And then said, Yeah, so I understand. Because, you know, animals, it’s hard to get animals into it. It’s hard to get into the hospital for animals, too.
And we just and my mom was like, She kept talking about it? She kept talking about it. Yeah.
Justin: Boy.
Okay.
Allison: So anyway, don’t do that.
Don’t be like, Oh, I was a caregiver once too for a ferret.
Justin: Right.
So I can understand. Now, you and I are both animal lovers, and we understand there’s a place and a time for the animals. But don’t try to compare in that way.
In any way. Just don’t compare in any way. Right.
Oh, anyway, I just had to bring that one up.
Justin: Another thing for supporters.
Allison: Yeah.
Justin: We talk about the ring theory a lot.
Allison: Yeah.
Justin: But you are going to, you’re going through your own grief for your friend. Or your own process to accept that this is it, and that’s part of it. As a supporter, at some point, coming to terms with accepting that this is the path that your friend or family member is on, and you’re going to have to talk about that, and you’re going to have to process that.
And probably doing that with the caregiver is not the right way to have that conversation or to do that processing. And so recognizing that and finding someone… In a bigger circle.
In a bigger circle, don’t spend your time when you’re talking to the caregiver about how hard it is for you to accept the path that they’re on.
Allison: Yes.
Justin: I think is another thing to remember.
Allison: Yeah, that’s so good. Because you’re right, it’s hard for even the people in other rings to accept that this thing is happening, right? To you and to the person in the middle and to all of it.
Justin: Right, so if you find yourself listening and supporting and having a conversation with this caregiver and you want to say, oh no, they might get better, or it could change, or don’t give up. You might be saying that because you haven’t accepted. And that’s like, you’re saying that for your benefit.
And be aware of that.
Allison: Or you might say, yeah, I know, I’ve been crying about that too. That keeps me up at night too. And then suddenly, caregiver is caring for the person in the bigger circle.
Right?
Justin: Right, and it’s okay to let them know that you are feeling pain about their life. It’s not like you can never tell them that you also feel bad for the situation, but don’t turn it into, like you said, where the caregiver is now caring for the person you’re sharing.
Allison: Exactly, exactly. Yeah, yeah, yeah.
Justin: Because we want to know that the people around us also care and are moved and whatever by our situation.
Allison: Yeah.
Justin: Yeah, it would feel weird if they acted like they weren’t.
Allison: Yeah, so like in that very original article about the ring theory, it was like a friend came to visit the woman who had breast cancer, and then the friend cried to the husband to say, like, this is so hard on me, and the husband was like, wait a minute, you’re supposed to be here to help us, and now you’re crying on me. So I think, yeah, to say to the husband, like, yeah, like we’ve been, you know, this is, we’re thinking about you so much, and we’re working, you know, and da-da-da-da. But not take care of me, you know?
Yeah, for sure.
Oh, this is a good one.
Justin: Yeah, I think so.
Allison: Yeah, I think I’m going to be thinking about this one for a while. So, yeah, let’s keep the conversation going, and hopefully, like, listeners, as you listen, and you have more thoughts about how this is showing up in your life or things you want to add, you know, comment or send us an email or whatever works, because we want to, I think this is a big topic, and like Justin said, it’s not just like a one time. It’s not like an easy, it’s not like, oh, just, you know what I’m going to do today?
Accept it.
Justin: Yeah, it’s not a checkbox you’re going to do once, and like, okay, we’re on the other side of acceptance now.
Allison: And I think even every time we have a bump in the road, or we have a new diagnosis, or we have a new something, it’s like the process, we’ve got to do it again, you know? Of accepting, oh, now it’s different, you know? So, yeah, listeners, reach out to us, let us know your thoughts about it.
I got to do a quick shout out. I had this incredible experience this week where I got to meet three women who are big fans of the podcast, and such big fans that they have created a little podcast club. And the three of them listened to the episode and then get together, talk about it, and they invited me to their club virtually.
And I got to meet them, and it was amazing. So just shout out to Jane and Marianne and Denise in Baltimore, who are super fans, and to the rest of you who are wishing you had a club, we are working on setting up some potential support groups that will be around the themes of the podcast so that we can all kind of have a club together to talk together about the things that you hear. One of those women in the club had said, she’s like, I finished an episode and my brain is just bursting because there’s so much stuff that you all just said, and I just need to talk about it.
And so if you have felt that, too, stay tuned because we’ll be talking in the upcoming weeks and months about opportunities for us to all hang out together online and talk about these topics together. So watch for that.
Justin: Yeah, be good.
Allison: All right, my wise friend, if this is what 41 is doing for you, I’m excited. I hope you continue to have a good week and have a good Christmas, and we’ll talk to you soon.
Justin: Okay, sounds good.
Allison: All right, bye.
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