Subscribe
Share
Share
Embed
The Space Between is the podcast where strength and vulnerability meet for families navigating life with cancer.
Hosted by Amri Kibbler, a cancer survivor and parent, each episode offers honest stories, expert insights, and heartfelt support for those balancing treatment, caregiving, and parenting - often all at once.
If you're walking this path, you’re not alone. This is your space to feel seen, find connection, and heal.
[00:00:00] Ashley Blackington: The tricky thing that happens is that everything falls onto the default caregiver, and so they know everything, and so then there's this double-edged sword of like this gatekeeping phenomenon that happens, right? It's like, oh, well, they just know everything, so it's easier if they do it. This is a way for people to have all the information in one space so that everyone who says they want to help can actually have access to the information without it being another step for the default caregiver to participate in.
[00:00:28] Amri Kibbler: Hi, I am Amri Kibbler, and this is The Space Between I'm a cancer survivor and a mom, and while those roles don't define me, they have shaped who I am. I created this space to share honest stories, expert insights, and meaningful support for families navigating life with cancer. If you're balancing treatment, caregiving, parenting, or just trying to hold it all together, you are not alone.
[00:00:51] Amri Kibbler: This is your space to connect, to heal, and to feel seen, and I'm so glad that you're here. Today's guest is someone who truly gets the weight of caregiving and the beauty inside it too. Ashley Blackington is a board certified occupational therapist. Mom of four and the founder of Dovetail, a CareTech platform, reimagining how we support patients and families through complex health journeys.
[00:01:16] Amri Kibbler: She's also the host of the AND/BOTH podcast where she creates space for the emotional truths of caregiving that often go unspoken. Let's get started. Ashley, I'm so excited that you're here today. Before we kind of dive into everything, can you like set the stage, share a little bit about your background just to get started.
[00:01:36] Ashley Blackington: Yeah, sure. Well, I'm really excited to be here and to chat with you 'cause it's always, always lovely. Yeah. So my background is I am an occupational therapist by training. I have worked in the industry for 15 years now, I would say. And my background was in acute care, acute rehab. Working in that kind of older adult space, I, I shied away from pediatrics.
[00:02:00] Ashley Blackington: I have all the kids at home. That's where, that's where I do the kid things. But yeah, so my, my experience clinically was pretty varied. You know, I've worked with brain injury, stroke, amputee, cancer, all of those kind of big, heavy hitter categories. And throughout that experience, learned that, or saw over and over again.
[00:02:22] Ashley Blackington: The impact of caregiving on these family caregivers and the lack of support and tools that are available for them. And so through a series of, you know, long, windy career paths, I ended up founding a tech company where we are building a platform for caregivers to be able to communicate, collaborate, and create these family care networks that they need in order to support them in their journey as caregivers.
[00:02:49] Amri Kibbler: Amazing. Okay. But let's start with your role as an occupational therapist. 'cause maybe people don't know exactly what that means, and it's definitely an underappreciated role and it's super critical. You're focusing on improving the quality of life for patients recovery, long-term, physical and emotional impact.
[00:03:06] Amri Kibbler: What are some of the things that occupational therapy may include for someone who's recovering from cancer?
[00:03:13] Ashley Blackington: Sure. Yeah. Um, I always think of occupational therapy or describe it as like, we're kind of like the grout, like everyone else has these really great defined roles and titles, like with a pt, walks into the room, you know, what they're doing in speech and, um, nursing and all of that.
[00:03:28] Ashley Blackington: And ot, we're in a little bit of everyone's business, but really trying to, really trying to figure out how to connect these things. Right. So the role of OT is everything from. You know the the A DL, so getting washed and dressed and grooming and all of that too, functionally moving around in your space, whether that's the hospital room to start with or going home, rehab, things like that.
[00:03:53] Ashley Blackington: Activity modifications, if you've had. A cancer surgery that involves a resection of some type or you have, you're gonna have new limitations. The problem solving that happens around that is oftentimes done with an occupational therapist. So we are a little bit of the Swiss Army knife of medicine where we come in and say, okay.
[00:04:14] Ashley Blackington: If everything changes right now, how do we look at how you're doing and what you need to do, and most importantly, what you want to be able to do and how do we either help learn, teach new skills, work on a adaptations for people, or modify the activity or the environment around you so that you can be successfully complete that, and that goes across the board.
[00:04:36] Ashley Blackington: We are a little bit in everything, but it's all comes from a place of trying to make sure that. At the end of working with an ot, someone who's saying, I didn't think I'd be able to do this again, has a way to do that in a way that is checking that box for them, filling their bucket, making them feel satisfied and competent in that skill, whatever it may be.
[00:04:59] Amri Kibbler: Okay. I wanna ask you about a couple of common cancer treatment symptoms that I know come up a lot, um, and can make it really difficult to parent fatigue. What are some helpful things that you might suggest to someone who is challenged by fatigue?
[00:05:16] Ashley Blackington: Yeah, I think fatigue is, is huge. It's, it's one of those things where, you know, if you can't get off the starting line, how are you supposed to get through all the things?
[00:05:23] Ashley Blackington: One of the big pieces there is really getting into a prioritization of things that need to get done. So I think that. When we go throughout our day, when, when everything is sort of ticking right along, we don't think about adding more things to our plate, right? It's like, oh, I'll just figure out how to put that in there.
[00:05:39] Ashley Blackington: But if you are, if you are someone who is going through chemo and you are dealing with fatigue, you've hit a ceiling. And so it's taking inventory of. How many things can I actually get done today? What does the energy output look like that I'm gonna be doing that? And having that be the lens with which you look at your to-do list or your schedule or whatever to say, okay, some things just have to fall off and some things have to be delegated, if possible, to delegate them and to really work within the limits that you have for that day.
[00:06:10] Amri Kibbler: Definitely. I feel like when I started making my list to manage fatigue, I was a. Terribly unrealistic, and at the end of every day there were like five things that I couldn't get to. So being able to let things kind of fall to the side, or little piles of things build up around the house and all of that can be a huge challenge, but you have to focus on what your priorities are and, and doing those things first.
[00:06:36] Ashley Blackington: Yeah, and giving yourself the grace of knowing that this is not a forever situation, right? It's, it's a new, it's a new symptom, or it's a new complication of this already very complicated journey, and that it's not meant to be a forever piece. That, that while you're going through treatment, while you're going through, you know, the healing process postoperatively, that you are going to be in a different state than you typically are.
[00:07:00] Ashley Blackington: And so giving yourself. Permission to say, okay, right now I cannot, I cannot run at a hundred right now. I can run at 40, and that's great because if I'm at 40 right now, I'm actually running at a hundred for myself.
[00:07:12] Amri Kibbler: Yeah. Actually, the phrase right now sort of became my mantra throughout healing. You know, just to be able to focus on where I was at that moment saying, well, right now I can do this and I'm just gonna focus on the right now, and then, you know, there's gonna be another season of my life where I'll be able to do other things, but this is where I am right now.
[00:07:31] Amri Kibbler: I love that. What about cognitive support? Chemo brain is a real thing. It can be really hard. Also, it amplifies the fatigue and the sense of overwhelm that many cancer patients feel.
[00:07:45] Ashley Blackington: Yeah, I think that's when you can really pull in some tools, and it doesn't have to be, you know, you've gotta set up this new home operating system, or you've gotta like.
[00:07:54] Ashley Blackington: Spend a ton of money to onboard a bunch of things. I think that it can be really simple. I think you can do a lot pen and paper wise. I think you can do a lot to make sure that you are tracking things. Like if you're normally a person that's able to sort of juggle six or seven different ongoing projects in your head at one time, it's to not continue to make that demand on yourself.
[00:08:16] Ashley Blackington: It's to get that stuff out on paper. It's the idea of, you know, the ticker tape that runs in your head, right? It's all these projects that you're doing, all of these reminders, everything, everything, everything. And what you really have to do is dump that all out and you've gotta dump it out onto paper.
[00:08:30] Ashley Blackington: Because I think that one of the things that happens often is when you're running at that capacity or you know, the, the pile is just getting too big. People start making lists, and then they make lists of the same lists. And so it's having a dedicated space where this is, this is what I'm gonna work from.
[00:08:45] Ashley Blackington: Whether it is a sheet of paper, whether it's a poster board, whether it's, you know, something on the fridge, but coming up with a routine, something that is intuitive for you, like I'm the person that. That has the calendar hanging on the wall in my kitchen because I'm in the kitchen and out of the kitchen a hundred times a day.
[00:09:03] Ashley Blackington: So that's just where I can stop and check out whatever is coming up because I still forget, you know, what I'm supposed to be doing in the afternoon. 'cause I have four kids and it's a thing. It's a whole thing. But I think that if you're facing sort of this chemo brain cognitive. Overwhelm right now is to get everything out in front of you instead of trying to continue to rattle it around, because that's gonna, that's gonna add a complication that you don't need, which is just feeling like everything is all falling apart and not being able to keep track of it.
[00:09:33] Amri Kibbler: And what are your thoughts on having that place be in your phone? Is that okay?
[00:09:38] Ashley Blackington: Yeah, I think whatever place works, you know, I think that the screen time situation is probably not a conversation that. That needs to come into this because think about it. If you're someone who is in and outta the hospital and you are going around to doctor's appointments and you are at home and you are still doing things like school pickup of some variety or whatever you have going on, you always have your phone with you.
[00:10:04] Ashley Blackington: So if you always have your phone with you and you pull it out and you've got something on there that can help you organize all those things, that's where it makes sense and it has to make sense for you. And I think that. Sometimes when we get into these situations, people say, oh, well I should be doing this and I don't wanna spend all this time on my phone, and I don't wanna do that.
[00:10:20] Ashley Blackington: You just gotta, right now, work with what you got and what's easiest.
[00:10:25] Amri Kibbler: Okay. Let's talk about doctor visits. Doctor visits are short and intense, like I feel like sometimes we only have 20 minutes. What are your top strategies to help patients and caregivers make the most of their time without feeling overwhelmed or like they've forgotten some of the things that they wanted to ask?
[00:10:42] Ashley Blackington: Yeah, I think that that's a really common concern is that, you know, you get into the doctor's office, and I used to say this all the time when I was working with people, like they always say at the end of the visit. Do you have any questions? But you've just talked for 20 minutes and they're still processing everything that you just said, and they're like, Nope, I don't have any questions.
[00:11:00] Ashley Blackington: And because I was in the hospital, I'd be able to circle back around. But inevitably, at least twice a day, I'd have a patient that I was just walking by their room and they'd say, oh, hey, I have a question. You know, that's gonna come up. And I think one of the ways that people can prepare for that is.
[00:11:15] Ashley Blackington: Keeping a running list of questions like if you have questions for your oncologist, if you have questions for your gp, if you have questions for your surgeon, whoever. Whoever you're going to see in the. Time leading up to that appointment is try to make a list of those because that allows you to make the most of the appointment time that you have that face-to-face time, because it's not easy to get somebody on the phone when you are not sitting in the office.
[00:11:38] Ashley Blackington: I think also, you know, depending on how your appointments are stacked, depending on, you know, if you have a bunch in one day or you have them spread out throughout the week, is that. Asking questions about how things interact is a really important place to do that. If you can pre prepare for this, for that appointment by saying, okay, my oncologist says one thing, my GP says another, the surgeon wants to do this.
[00:12:03] Ashley Blackington: It's that coming in in that really prepared kind of way. And that doesn't necessarily mean you've gotta go and like research all of the terms. And I think that sometimes when people talk about. Medication and they talk about treatment and stuff like that because that's the language they speak. They do a really good job of speaking that language, but not necessarily remembering that the person that they're speaking that to is probably not native in medical terminology or native in prescription or native in drug interactions and things like that.
[00:12:31] Ashley Blackington: So always, always, always using that time to say, I don't understand what this is. And not being nervous or afraid or concerned that that's gonna in any way impact the visit, because that's the time. It's, it's what, how are these things all gonna line up with each other, and what do I need to know to prepare for the next thing?
[00:12:53] Amri Kibbler: Okay. Care often becomes a group effort. What advice do you have for families and friends looking to divide roles? Avoid miscommunication and collaborate instead of getting overwhelmed.
[00:13:05] Ashley Blackington: Yeah, I think a, a really important thing for family caregivers to know is what their capacity is. I think a lot of times when people go into these situations of caregiving, they say, I wanna help.
[00:13:17] Ashley Blackington: Just tell me what to do. I wanna help. And the tendency is to say, you know, to say yes to everything. And then, then it becomes really overwhelming. Something like a, a cancer journey. It's a long journey. It is a lot of appointments. It is a lot of follow up. It is a lot of recovery time and it's a lot of big things like a potentially a surgery or small things like fatigue that goes on and on and on for months as you're working your way through it.
[00:13:43] Ashley Blackington: I think that. Having an open and honest conversation in the beginning of this journey. Hey, my sister can help with this, but she's not comfortable here. Hey, my, you know, so and so can help with this, but they're not comfortable here, or they don't have the time, or figuring out what people's capacity are and then build the team from there versus saying, I have these.
[00:14:04] Ashley Blackington: Three people, or this one person or six people, and then we just dish out the jobs, is that if it's specific to the person and what they're able to do, that, that's gonna create a much more long-term, successful strategy.
[00:14:16] Amri Kibbler: And is this something that Dovetail can help with?
[00:14:19] Ashley Blackington: Absolutely. I saw this all the time.
[00:14:23] Ashley Blackington: It's that, you know, especially when you have a default caregiver, you know, the person that everything rolls down into their lap is someone that's like, I guess I'll just take it on. I guess I'll just take it on. You know, it's, it's so much easier if it all just falls to one. It's the idea, right? Like you take them to the doctor, so you're the one who knows.
[00:14:40] Ashley Blackington: So you, you, you, you, you. And there has to be a way for that person to outsource some help, whether it is a paid endeavor. But for me, what I saw over and over again was families that were pulling this together and, and we know this to be true, you know, in the US family caregivers are the backbone of the long-term care system for everybody across the board, not just cancer, cancer patients and, and people that are impacted by it.
[00:15:05] Ashley Blackington: So with the Dovetail, the idea is that you are. Able to create it from a democratized space. It's not that default caregiver that assigns tasks. It is a working platform where you can say, these are the things that need to get done, and it updates in real time. So people that are a part of your care network can say, I will take that on, and they have all the information there.
[00:15:26] Ashley Blackington: And I think that when you move away from a default caregiver status, that person. The tricky thing that happens is that everything falls onto the default caregiver, and so they know everything, and so then, then there's this double-edged sword of like this gatekeeping phenomenon that happens, right? It's like, oh, well, they just know everything, so it's easier if they do it.
[00:15:44] Ashley Blackington: This is a way for people to have all the information in one space so that everyone who says they want to help can actually have access to the information without it being. Another step for the default caregiver to participate in.
[00:15:58] Amri Kibbler: I teamed up with Stacy Igel and Elyse Ryan to create S.E.A. Waves of Support: healing selenite bracelet sets. You keep one and gift the other to someone facing cancer or life's challenges. A powerful reminder, they're not alone. Learn more at seawavesofsupport.com. Many of our listeners are caring for either a partner or an aging parent or even a kid. This can be extremely emotional.
[00:16:24] Amri Kibbler: What kind of advice would you offer them to support themselves through this?
[00:16:29] Ashley Blackington: In my experience, the tendency has been for people to go, you know, wholeheartedly into it as fast as possible and as hard as possible, right? It's when you hear that diagnosis and you know it's the person that you have been married to for 10 years, or your child or your parent, there's so much emotion and caring and concern and love in that.
[00:16:53] Ashley Blackington: You start pouring out of your own bucket pretty quickly and I think that my advice, if you are someone who is beginning this journey, is to circle the wagons as quickly as possible. You do not have to be a one person rodeo if you don't have to be, you know, if, if there are people that are able to help with things that are not necessarily related to the treatment process, but there are people that can help with.
[00:17:19] Ashley Blackington: All of the other things that are going on around you, enlist them. ASAP. Don't wait because by the time you realize you're burnt out, you are literally a pile of ashes because you're done. It is to speak to people. As well, you know, we are humans and we do best in community and creating spaces and, and sharing experiences with other people.
[00:17:39] Ashley Blackington: So whether that means finding a support group, finding a, uh, a community of other people that are going through the same thing, whether it means therapy, whatever it is that the, the double isolation of being the caregiver and being. The person that is in lockstep with this person going through the process is it takes a huge toll on the caregiver.
[00:18:01] Ashley Blackington: So making sure that you're taking care of yourself because if you take care of yourself, you are in a better position to help take care of that other person and to start early. Get as much help as you possibly can. And that might just be little things, but don't sort of like close it all in 'cause that's, it makes it so much harder down the road.
[00:18:20] Ashley Blackington: Yeah.
[00:18:21] Amri Kibbler: And what about small routines or daily practices that caregivers and patients could incorporate into their routine to have mindset shifts or to help them to stay grounded?
[00:18:34] Ashley Blackington: Yeah, I think that there's a really interesting dynamic that happens when you move into the caregiving space. Is that because that it's almost like a project management kind of piece, and I think this is why a lot of people that are going through something like this that is, uh, it's such a massive undertaking in your life, um, that they traditionally, or they, in the last few years have turned to like a project management software piece because.
[00:19:01] Ashley Blackington: That's what it feels like, right? You've gotta manage appointments and you've gotta manage medication and all of that stuff. But what happens when you do that is that the person that you love and care about becomes a project. And I think that creates an opportunity for disconnection where it just becomes about the medical journey that you're on together.
[00:19:21] Ashley Blackington: So I think trying to make as many opportunities as possible to like. Close the medical piece and remember to connect with each other in whatever way that means, you know, if that means like getting a chance to go outside and hang out together, whether that means like closing down all of the health records and all of the appointments and all of the logistics and things like that.
[00:19:43] Ashley Blackington: To just really try and connect with each other is really important. If you are a caregiver that has a practice, like a meditation practice, a meeting with friends, practice a get up in the morning and journal or you know, stay up late at night. I am not a 5:00 AM journal, hot water and lemon person. It's not.
[00:20:02] Ashley Blackington: That is not me. I am a late at night. Possum more kind of person. So every time someone's like, you need to get up and you need to do this, this, and this. I'm like, that doesn't work for me. So knowing what's gonna work best for you and what makes sense for you, and also what allows you to maintain as much of the emotional connection and the relationship as possible outside of caregiving, I think is really important to keep top of mind.
[00:20:28] Amri Kibbler: Yeah, and you brought up a really great point about the importance of connection in healing. 'cause I do feel like there's so much value in that, in surrounding yourself with the people who are caring for you and also other friends and family and people who are going to bring in love and joy and support and being able to have fun in a way like.
[00:20:50] Amri Kibbler: Not letting your cancer diagnosis consume every moment of your life. Like for caregivers. If you can also add in fun things that you do together. You know, being able to be silly together sometimes and doing those things that make it feel more like a normal part of your routine helps the cancer patient to feel like they're thriving and not just sort of surviving and like.
[00:21:12] Amri Kibbler: Holding on until they get through their treatment because as you said, sometimes the treatment can go on for years and you can't just hold on for that long. You have to find a way to be able to live your life and enjoy your life and feel really connected to the people that are around you. Be able to go out to dinner or on walks or you know, whatever it is that is bringing you joy.
[00:21:36] Ashley Blackington: I think too, like from the OT perspective, we talk about engagement and occupation. This is what people say all the time, right? I'm, I'm the occupational therapist, and I say, well, I don't, I either don't need a job or I've retired or whatever. And I say, we're talking about the occupation of living. And so.
[00:21:52] Ashley Blackington: There is so much more to life than the basics, although the basics are such an important point a part of life. And so exactly to your point, like you've got to find a way to do the things that light you up, especially if you're going through something like this together and as a caregiver to remember to connect with.
[00:22:14] Ashley Blackington: The things that help you feel whole and that help you feel balanced. And part of that, if this is a relationship that of with someone that you are the caregiver for, is remembering that connection that the two of you have. Because that's like to what you were saying earlier, that's the right now piece of this, right?
[00:22:30] Ashley Blackington: Like right now, we cannot go on a trip to someplace warm in the winter because we're here and we have all of this going on. What can we do that doesn't necessarily. Equate, but it equates in the way that we are able to to engage with that right now, and it's trying to make those modifications along the way in that right now sense, knowing that the goal is to eventually get back to the things that you were doing before, but trying to keep that boat floating as well.
[00:22:58] Ashley Blackington: Yeah,
[00:22:59] Amri Kibbler: definitely. Yeah. And I, I use the what now theory. When I was like, okay, right now I can only eat chicken and rice, but what are some other things that I'm enjoying myself right now? Like, I can get out and take a walk with my kids. I can be out in nature, you know, I can watch a fun movie. All of those things.
[00:23:17] Amri Kibbler: So it's like keeping in mind. What are the things that you can do and appreciating them, even if they're small things in the moment? Because small things really can make a huge impact. And the thing that you remember can be a joke that you are sharing with your partner or your kids. So the small things can be the big things,
[00:23:36] Ashley Blackington: especially when you have so many big things going on at once.
[00:23:40] Ashley Blackington: This is not a little thing, it's a huge thing. So how can you get like those flickers of joy in there that that make everything sort of light up a little bit?
[00:23:49] Amri Kibbler: And is there any last thoughts or advice that you want to share with our listeners?
[00:23:55] Ashley Blackington: I think that from a really an OT perspective is to. To do what you can to take care of yourself.
[00:24:02] Ashley Blackington: I know that sounds like, oh, great advice, but really to make sure that you are not losing yourself in the process as a caregiver and to make sure that you are not losing yourself, uh, in the process as someone who is going through treatment and that process. And that is to, like we were just talking about, is to remember the things that light you up to remember the things that you enjoy, to remember the parts of your life that do make you feel like you're thriving, that do make you feel like.
[00:24:29] Ashley Blackington: You know, tomorrow is the day that I want to get to because it's not all doom and gloom and appointments and feeling terrible and discovering the things that I can't do right now or I can no longer do. And it is to try and give yourself a lot of grace and space and stay as involved as possible in whatever capacity that you can in the things that, that do light you up and bring you joy.
[00:24:55] Amri Kibbler: And where can our listeners find you and Dovetail?
[00:24:59] Ashley Blackington: Yeah, so you can find me. I'm the most active on LinkedIn, just Ashley Blackington. There you can see all the info about Dovetail at dovetaildesigns.co. Our platform is launching, I'm not sure when this episode releases, but our platform is launching in in June and we are.
[00:25:18] Ashley Blackington: Itching to get it out the door and itching to hear from caregivers because as, as the project moves on and the product moves on, we want it to evolve in that way. And so I would love to connect with anyone on LinkedIn who has questions about caregiving, ot, anything like that. I'm the most active there.
[00:25:35] Ashley Blackington: You can also find us on Instagram at my Dovetail app, and I'm happy to, to speak to anyone at any point in time about whether it's a caregiving journey question or an OT question.
[00:25:47] Amri Kibbler: Amazing. Thank you so much for joining us.
[00:25:49] Ashley Blackington: Thank
[00:25:50] Amri Kibbler: you
[00:25:50] Ashley Blackington: for
[00:25:50] Amri Kibbler: having
[00:25:50] Ashley Blackington: me.
[00:25:52] Amri Kibbler: Thanks so much for joining me on this episode of The Space Between.
[00:25:56] Amri Kibbler: If this show brought you comfort or a sense of community, I'd love for you to subscribe and share it with anyone who might need it too. You can join the conversation on Instagram at @thespacebetween_cancer.family and head to amrikibbler.com for more resources designed to support parents navigating cancer.
[00:26:15] Amri Kibbler: Just remember, you're never alone. This podcast is here as a. Companion on your journey towards healing, growth, and connection.