Season 1 Ep 36: 3 Things In 3 Years That Helped Me Navigate the Role of "Cancer Caregiver"


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This week on the Getting Better Podcast, I am sharing 3 things I've learned over the past 3 years as I've navigated being a caregiver. Listen in as we explore things like the importance of taking care of yourself, choosing your mindset, and making sense of the things that don't make sense.

I can't wait for you to meet her so listen to the episode above, on iTunes HERE, or read the transcription below. 

Episode Transcription: 

Jessica Walker
Welcome back to The getting better podcast with another episode to encourage and empower the cancer community. I'm your host, Jessica Walker. And today I wanted to do something a little bit different. So we are now over three years since Tommy's diagnosis, he was diagnosed in October of 2017. And we have past three years in this world. And I just was doing some reflecting of like, the things that I've learned and the things that have helped the things that I often get asked like when someone's newly diagnosed, or a family member is newly diagnosed, like what helped me cope, what helps me get through the last couple years? And it's, it's a hard question to ask, because so much goes into it. And I but I did kind of do a little thinking on this and came up with three things that I have learned over the past three years of being a caregiver, that I do feel like, really helped me along this journey of being the wife of someone going through a cancer diagnosis, cancer treatment, cancer, survivorship, or like we are just living with cancer, what that looks like.

 

So the things that I came up with, first, I think, is a pretty obvious one, but was one that took me a really long time to grasp, and take to heart and implement. And that's that you have to take care of yourself to take care of somebody else. I at the beginning, when Tommy was diagnosed, for a couple of reasons. One, I just I didn't want to ask for help, because in my mind, for some reason, it made it feel like it was a big problem. I thought that I would just minimize it by saying that I didn't need help. Like if it was, if it was easy enough for me to deal with it on my own. And then that meant it wasn't really that big of a deal that we would get through it. It was not a huge deal. And so it was kind of a coping mechanism. That did kind of backfire. Because I really did need the help. I just wanted to be the best support for Tommy that I could possibly be. And I wanted to be the best caregiver. And I know that a lot of people probably feel the same way that they just want to do everything, right. And they want to be able to help in the ways that they can because there's so much that makes you feel helpless. And so being a good caregiver was something I thought that I had control over. And that's something that I I had to deal with. Because there's no such thing as a perfect caregiver, you're going to say the wrong thing, you're going to do the wrong thing. You're going to be exhausted and feel like you don't have anything else to give. And the thing is, is that I got to a point where I had been neglecting support. Like I wasn't letting anyone help me. I said I could do it all myself. And I could give 100% of myself to Tommy's Tommy's needs for so long for so many months, that several months in I got so worn down and so tired and sick because I wasn't taking care of myself that I really actually wasn't able to support Tommy in the way that I wanted. He was on chemo, he was immunocompromised. I was ill like I literally had like a cold that was pretty severe. Like I think I've ever been a sinus infection kind of thing, just like but something that was like, took me out. And I wasn't able to support Tommy in the way that I wanted. And I literally couldn't be around him because I was gross and Jeremy. And that's what it took, like kind of hitting that rock bottom to realize, okay, we need to reassess. It's not selfish, to take care of yourself. You shouldn't feel guilty about needing time for yourself to be able to then pour into the other person that you want to support. And that that was probably the hardest thing for me. I'm letting the help and letting the people around to support us. That was kind of a first step. And I started saying yes to more things. I learned how to communicate my needs better and communicate what would be helpful better, which is a whole language and of itself. But that that part was easy. But it was the whenever I felt like I needed to take a break or whenever I felt like it was too much I needed to go on a walk or whenever I felt like I needed to go out and see a girlfriend and talk it out. I felt like I was being selfish because I wasn't spending that time on Tommy. And he was the one really going through it. Like I was telling myself. He's the one who's in pain. He's the one who's dealing with this. So like, I felt like anything that I needed to do for myself was selfish and was time taken away from Tommy. And that is a mindset shift, that as soon as I realized that wasn't a sustainable way to be a caregiver, that wasn't a way to be the caregiver I wanted to be. That was when things really shifted for me. And I was able to say, you know what, I am a better caregiver when I take care of myself. And that simply is true. And it's sometimes just takes evidence that you have to build for yourself to prove to yourself that this is true, but I just would do it in little steps. I would say like you know what, I'm going to go on a 10 minute walk for me because I know that if I clear my head I just have a little break and come back, I'm going to be a better caregiver, I'm going to speak to him better, I'm going to have better ideas. And I would say, You know what? Yep, that's more evidence to support this idea that I am a better caregiver when I care for myself.

And it's like the whole thing. We know this, we hear it all the time on airplanes, you have to put your own oxygen mask on first. Like, these are things that we hear, and we can repeat. But they are things that we don't always take to heart. And when you're in the moment of caring for someone, it can be easy to just push it aside and say, yeah, yeah, but I don't need that. Yeah, but I got this. And I just want if you're starting out your caregiving journey, or if you're someone who feels like you're, you're drowning, and you just really feel like you could be, you know, navigating this better. Just know that taking care of yourself will make you a better caregiver. And if you have to write that down, which I did, I had to write this down, like in my journal everyday, like, I'm a better caregiver when I take care of myself. And so that's, that's what I have, for my first thing that I've learned that really helped me navigate the role of being a caregiver, the past three years, is taking care of yourself so that you can take care of someone else.

So the second thing that has also really helped navigate this role is that the idea that I get to choose my mindset, and I get to choose my perspective, and this also goes into Of course, like taking care of your mental health. And that's kind of a more in like the first, the first bullet point, I'm getting support you need with therapy, or whatever it is to make sure that your mental health is set. But once once that's kind of set, and you're navigating kind of the next steps. This the idea that I get to choose my mindset and my perspective, made a huge difference for me, because there's so much that we have to wrestle with when we are moving forward with how, what our identity looks like how we perceive ourselves with cancer as part of our story, even though it's not our personal story about like the person we're supporting. What is what are we what is our new identity, these big, massive questions that I realized, once I got to choose that for myself, I got to decide what that looked like for me. It made it a lot easier to kind of mentally manage. When I thought it was just like cancer was put on us, it was something that was dropped in our lap that we didn't want. And of course, we didn't want it to be part of our story. And so I kind of rejected it. And I was like, kind of like living a double life of like, I'm still the old me. But I have this thing that's happening with Tommy and I are like, we're still like Tommy and Jesse precancer about we have this whole other thing. And it's like, I was living a double life. And it was when I let my mindset shift to you know what cancer is part of our story? It just is. Is it fair? No. But is it our reality? Yes, does it have to be our entire identity that we are? The cancer couple, though we are, this is this is our entire life is that we're navigating cancer, and we're going through cancer like, no, because in reality, that's not the case, either. Like Of course, it's like a part of what we do every single day, it's on my mind a million times a day, like I'm not gonna lie about that and say that's not, but there's so much else than 99% of our lives, that make up what we are, what our identity is how we perceive ourselves how we perceive our lives and, and get choosing that mindset that I am going to let this in, I'm going to let this be part of my story. I'm not going to live this double life, I'm going to just say like, you know what, I can't push this out. This is a part of what we're going through. But I can choose how much weight I give it and how much time I give it and of course, like Like I said, it's you can't always it pops up when you don't want it to you don't want to think about it. And it pops into what you have to do and you don't want to deal with it. But it doesn't have to be your entire story. I hope this makes sense. This is something that I'm still like kind of like I've been thinking about how to how to verbalize what I mean by this, but getting to choose your mindset and your perspective. As opposed to feeling like it's put on you and you didn't choose it. It's just empowering to me to to make that differentiation.

 

And the last thing that it's another thing that's a kind of a heady like trying to explain it. I'm we'll see how it goes. But it's that the third thing that I've learned, and that's helped me navigate the role of being a caregiver is admitting that the math doesn't add up. And actually kind of makes me emotional, a little bit to think about, but it's like, it's something that it's just like, there's something I mean, cancer is not fair. Cancer is not fair. That is something that is just that's a fact for me, like I know, it's it's not it's not no one deserves it, no one asked for it, no one should have to go through it. And it's not fair. Um, but I spent a lot of time in the early months and years of this and I mean, still today To be honest, like I'm still figuring it out, but like, trying to make the math add up. And what I mean by that I learned this phrase from my friend Liz who had lost her dad shortly after Tommy was diagnosed and we were just talking about trauma and like how we navigate it. And she says that she was like, You know what, two plus two doesn't always equal four in the world of trauma. And at first I didn't understand it. Like, I was just like, does this just mean life isn't fair? And I didn't want that answer. But she told me that like, in life, we expect every problem to be solved by a certain amount of tears, a certain amount of money, a certain amount of effort, a certain amount of prayers, a certain number, like, we think that this should be the case, because that's how it makes sense for us that like, if we put this much effort in, we should be able to, to fix this or like the math should add up. But some problems don't add up. The math just doesn't work. And like, it doesn't matter how many, how many tears and how many doctor's appointments and how it like, sometimes the math just doesn't add up. And it's not fair. And you would think that like this would really disheartened me be depressing made me think that just like, I have no power, but it actually had the opposite. And that's why I'm bringing it up is because I realized that a lot of my frustration with it was coming from seeking out the right math. How could I give my give more of myself to the problem to make it out up? How can I give more to make the math work? Would I ever be able to give enough tears, money, time prayers, laughs? hugs love to be able to fix this? And the answer was no. And when I allowed myself to release the idea that I needed to solve cancer, with math, I really hope this is making sense. Just go with me. When I learned that, it's that I learned that it's just not going to add up. And all we can do is try our best practicing balance rather than finding it this kind of idea that it doesn't have to be a net sum. And it's like, long story short, I don't have the answer. I don't have the math, I don't know how to sort out unfair problems. I don't know how to navigate trauma and the best way, but I get to also make my own math. And this was what felt empowering to me is that sometimes the math works in our favor. The math not adding up works in our favor that I get to say like, you know what, I have this massive, horrible thing that I'm dealing with, but maybe a 30 minute cup of coffee with a friend makes it feel better? Should it? Probably not like should one little 30 minute coffee, be able to fill that hole and that pain and that panic for the rest of the day? No, if you look at the math, like I don't think that should really make a difference. But sometimes it does. So sometimes the math not adding up works for us. And the moral of it is that the math it just doesn't really matter. And you know what, math, math has never really been my strong suit anyways. Life. But it's just it is empowering, it is somewhat reassuring to know that you know what, like, I don't have to solve this in an exact science, like, I can just navigate day to day, do what feels right in the moment, give what I can support how I can do the best I can without while knowing that some days it will be enough, some days it will feel like it's not. But just showing up is the key. I hope that made sense. If it didn't, I'm just glad I got it out there. This is something that I'm going to continue to be thinking about and wrestling with and trying to come up with the words for but that's the thing, I think that when I was making this list, it was like all of these things are mushy, and confusing and difficult. And but I like thinking about them because the more I do the lot, the more it's like that quote that I love that Bernie Brown has that she says that she holds her shadow in front of her. And that's how I feel about this kind of stuff is like, it's so easy to get to like want to put your head in the sand and just say like, this is happening to me and this isn't fair. And and yeah, and that's true. But again, we get to choose our minds that we get to choose how we think about it, we get to choose how much we let it in and not in and and we get to choose how we want our math to work and and and it's just one of those things that as you move through it and as you have grace with yourself and as you know that i you're not going to be the perfect caregiver. And that's okay. Because you're showing up and that's and that's all that you can ask of yourself. And yeah, that's that's what I have for you guys today. Let me know your thoughts on this. I'd love to talk this out with with you guys and on you can message me like on Instagram message I better in company. B I'd love to hear what you guys have learned through your journeys of being a caregiver. And if this relates to if you're if you're a survivor, if you're going through cancer yourself how these kind of concepts, if they resonate if they don't, I just I'm interested in these conversations and I want to bring them up because I know they're tough and sticky and weird, but like, I think they're worth it. So I will talk to you guys next week. And I hope that you have a wonderful Wednesday.


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