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And so I am part of the story and I need care and respite and, and support from what I experienced yesterday as well. And so it’s not just like, ok, he’s the one with the bandage, but I also went through a really big thing yesterday and many, many, many other days of my caregiving life. And so therefore, I am part of the story and I also need support and care.

Caring for aging parents or other loved ones while working, raising Children and trying to live your own life, wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the happy healthy caregiver podcast to show where real family caregivers share how to be happy and healthy while caring for others. Now, here’s your host, Family Caregiver and certified caregiving consultant, Elizabeth Miller.

Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. We are also part of the whole care network streaming radio channel so you can download the app and listen to the Happy Healthy caregiver podcast, many other whole care network podcasts and lots of other music and entertainment is your company looking for a speaker for their employee resource group or an organization. You are affiliated with planning an upcoming Expo conference or appreciation lunch. If so consider passing along by name and organization as a potential speaker. I’m available as an in person or virtual speaker and enjoy connecting with family caregivers and fast tracking them to support and resources. I’ll link to my speaker page which includes a speaker, demo video in the show notes page. I’d like to thank our episode sponsor, Eve Loneliness and isolation are problems that many of us face and the health consequences are serious equivalent to smoking 15 cigarettes per day according to the surgeon general. So today, I’d like to introduce you to a new companion service aimed at seniors and people who live alone called Eve. Eve is available to chat by phone 383 7 and speaks multiple languages. She hosts yoga classes, plays word games, does cooking lessons and the list goes on. She also sends real time alerts and daily health updates to caregivers to keep you in the loop. And it all starts from as little as $15 per month. Sounds too good to be true. Check it out for yourself at I AM Eve dot A I, that’s I am Eve dot A I for this episode segment of what I’m reading sometimes I just want to get caught up in a good contemporary romance but not really like in the Harlequin kind of romance way. If this is also your cup of tea, then this book is for you. It’s called Part of Your World by Abby Jimenez. The funny thing is, is that I read book two before book one and I fell in love with it. So I knew I needed to go back and read book one. It was no big deal book two just builds out one of the side friend characters that are mentioned in book one. So you definitely don’t have to read them in order if you like a good country mouse meets city mouse story where dad would never approve hence forbidden love, then this is the book for you. It’s a modern fairy tale and while 100% predictable, it’s super satisfying. And for me, I gave it four out of five stars. Favorite thing I want to share with you in this episode is that the meal boxes are back for the Millers. My husband and I have missed the ease, the convenience and really just the general health benefits of the boxes of meals that come portioned for just the two of us and we can just easily prepare them in less than 2100 minutes. I signed up again for Green Chef, which out of the three or four different meal subscription companies we have tried. We have like this one, the best, one thing about these meal kits is that when you deactivate, they beg you to come back. So we got a really nice discount to return to Green Chef with the savings off of the eight boxes and I first selected four nights of meals. But it seemed like that was just too much for us. So I’m going, we just went back to three meals per week. So when Jason’s traveling, which he sometimes does for work, I have enough either when I make it for dinner to have a leftover lunch the next day or sometimes I just make it for lunch. So I’m gonna share a referral code in the show notes so you can get free meals and test it out. If this is something that you’re looking to just kind of change up your routine and try out different things and not have to think a lot about it.

Let’s meet today’s caregiver in the spotlight. Alison Breininger has a master’s in education and she spent 250 years in the realm of education. At 253 years old, she became a caregiver for her husband Sean. When he was diagnosed with the rare genetic disease fanconi anemia. She has been by his side through countless treatments and experience firsthand that family caregivers are in what she calls the negative space, vital yet overlooked and unsupported in this episode, Alison shares. Why caregivers are part of the story and need to be recognized? Why the oxygen mask analogy falls short. What tried and true tools help her in her caregiving life and why Bright Siding is detrimental for care, advocacy and caregiver wellness. Enjoy the show.

Hello, Alison. Welcome to the Happy Healthy Caregiver podcast. Thank you so excited to be here. Thanks for having me. I know and we say that, but like we had to work a little bit to get here. We did, we did, you know, caregiver life, right? I think, I don’t know how many times I had to reschedule, but I think one time we were like in the er, I don’t know, but that’s a nice thing about hanging out with other caregivers is you get it and I felt less bad, you know, canceling with you because you get it. You understand that caregiving life gets in the way. Yeah, it happens. It’s, it laughs at all of our plans often for every, every day, every day. Exactly. So I don’t take that for granted, but I know that this is, you know, time that you could be doing something else and I just appreciate you being here. Um, so let’s see what the happy, healthy caregiver jar has for our episode here, Alison and get your thoughts on this. It says no, it’s a good one. They’re all, I think they’re all good. I say that every time I, I matter, I am allowed to say no to others and yes to myself, my wants and needs are just as important as anyone else’s. Does that ring true for you at all? Absolutely. I mean, it’s something that I preach all the time to people who, you know, are following me because I think that, you know, something that really bugs me is that people are always saying like the oxygen mask analogy or the poor from an empty cup analogy. And I think that those, what those are trying to say is like you should be well, so that you can take care of your person, your health matters so that you can take care of your person. And certainly that’s true. But what I love about that quote is it’s like, no, no, no, my health matters. End of story. You know, it’s not like because people have said that, well, you can’t go down because if you go down, what happens to your husband Sean, right? It’s like, well, but we don’t want me to go down at all. Right. Yeah. But what happened to me? I know. Yeah. I, I don’t love that oxygen mask thing either. And that did not resonate for me because it’s not a caregiving life. Right? Like, there’s no, like, magical mass going to come out of the ceiling and be like, hey, put me on, um, things are getting bad now and there’s, it’s, it’s a crisis mode, like it’s a one and done type of crisis mode. So the analogy that got me to the point where I started to invest in my own health and happiness was the feeding a nest of hungry birds. Like I nobody’s ever satiated, right? Like somebody’s always screaming with their little mouths open and it could be your job, your pets, your spouse, your girlfriends, your, you know, whatever your, your care recipient, um, all of that and then it never ends and you can just be constantly like give it, give, give it and then it, like it clicked for me that if I didn’t go out and it’s still a little bit like to your point like, oh, we’ll do it to get. But like, no, but if I didn’t feed myself, I was never going to have enough energy to do anything. So that was what clicked for me. It’s still a little bit of like, but you’ve got to take care of other people. Um So I don’t know what the perfect analogy is of that, but I, whatever, whatever helps people kind of get snap into it and be like, this is not sustainable. Yes. Well, I think part of it and, you know, I have like caregiver gift boxes and stuff that I sell and the theme of those is I’m part of the story and I think that’s part of it is that caregivers feel like, well, I, I don’t need to rest because I like so right now my husband yesterday had two more moes procedures is a mo I feel like one of the most terrible things you can do to a human. Right. Correct. Yeah. And so it’s what happens in the worst is that it happens while you’re awake. So it’s a skin cancer removal procedure. So essentially they find a skin cancer. They took, take a big old chunk of skin around it while you’re awake and then you wait and then they bring it to the lab, see if they got clean margins. If they didn’t they come back, they take a bigger chunk of skin, you know, and you could, so you could be there all day and then eventually they sew them up. But I mean, so he has had around, I kid you not 2142 of these. Oh my goodness. So yesterday he had two. Um but that meant we were still there for like five hours. It’s very bloody and painful. And I’m always in the room for them because just, it’s like, the least I can do is, like, be there for him. And so, you know, he, people would be like, yeah, he went through this terrible thing yesterday and he is now bandaged up. But I also went through a terrible thing yesterday. I mean, watching, like, I, I hope this isn’t too gruesome for your audience, but if they’re caregivers, they probably are fine. I was sitting there in the chair and I looked up and there was like, literally a puddle of blood on the floor. It’s like they watched him get tortured. Exactly. And at one point I said, could you like, wipe up that blood? Like, it’s just a little distressing that every time I look up, I see that and they’re like, well, our sterile field yada yada. So they just kind of like chucked some like gauze on top of it. And I’m like, so that is what I endured yesterday. And so I am part of the story and I need care and respite and, and support from what I experienced yesterday as well. And so it’s not just like, ok, he’s the one with the bandage, right? But I also went through a really big thing yesterday and many, many, many other days of my caregiving life. And so therefore I am part of the story and I also need support and care. I agree. I agree. I, I believe that as family caregivers, we get a diagnosis when our loved one does like, hey, you know, you’re a family caregiver now. Like this is your diagnosis, it’s different for sure. But it’s still a diagnosis and the yet that most of the focus and the attention right is on the care recipients care plan. And it’s like, oh this other person over here, like there’s not really a scripted out care plan for them. So, I mean, it didn’t exist, you know, years ago when I was caring for my mom, like, hey, here’s some support and resources for you that never happened, that conversation never happened and I’m sure it’s probably still not happening. And I wish that we could, you know, we could change that. Um Well, your story is the story on today’s episode, Alison, so happy, healthy caregiver. That’s why I love this podcast because I want, you know, to, to spotlight caregivers and to put the focus and attention on their part of the story and, and what, you know, what, what they’ve learned and what’s helped them and what they’re still working on and, and how they’re, you know, hopefully infusing some, some stuff, some happy and healthy stuff for them. And so I love that you, is that, do you call it your mantra or your motto? You were part of the story. Yeah. Yeah. Yeah. So, so let’s do that. Well, and you know, in prepping for this conversation too, I realize we have something else besides caregiving and podcasting in common. We both married our high school sweethearts. Yes. Love that. So, I married my prom date. It’s like prom season and then I always feel like I have to add, not because I had to, because I wanted to, um, like, it wasn’t like some shotgun wedding or anything. I get married, like, right after prom, but we had years of dating and, um, but, yeah, so going on 220 years, I think this year. Yeah. Congratulations. That’s amazing. How long have you guys been married? Oh, man. Let’s see. Let’s do 287 years. We’ve been married. Yeah. But we were together for, like, five years before because we were through high school and college and then got married right out of college. But what’s wild is that we have a teenager and she is now a senior in high school. And so I keep thinking, like, when I was her age, like, my senior year I basically just spent, like, making out with Sean who I am now married to. And I’m like, how is that the same person? And I tell her all the time, like, just because we found each other in high school. Most people this doesn’t work. So, don’t think that this is the way I don’t think. I think it is kind of a rare, a very rare thing. Um, rare for it to happen and then rare for us all to still be together and, yeah. Yeah. Exactly. And working, working through it. And I think about that my daughter’s 83 and I’m like, gosh, I was, like, planning a wedding when I was 28. Um, yeah. And, and don’t, don’t, I don’t, I don’t do it, don’t do that. I’m not ready for that for you. Like, so, so interesting. Well, how, you know, and how much of those years Alison has, has caregiving been in part of your marriage? Yeah. So we, let’s see, we were married in 230 and then we adopted our daughter in 2100 and then we had her for about one year before the, some of his weird symptoms started coming. So it’s 2010 is when symptoms began and then it took us a year to figure out what was going on. So, a year of back and forth to mayo clinic until we got a diagnosis. So, I, I do count that, that, that first year as caregiving, even though I didn’t realize that at the time. Um, but it absolutely was because we were, you know, trying to figure out this thing. Um, but 2011 is when the big diagnosis came and then it’s just kind of been like nonstop since then. So, 13 big years. Oh, my goodness. Yeah, while working, raising kids and living life. And, um, and would you call yourself like a rare disease caregiver? It’s a pretty rare. Absolutely. So that, which has its own set of complexities to it because it’s not like you can just, like, go Google and like me, everything I need to know about this, uh, talk a little bit about that. Like, what’s, what’s that like for you as a rare disease? Yeah. So I’ll just name that the disease is called fanconi anemia and it causes, um, bone marrow failure and cancer at a rate of around 700 times that of the rest of us. And so the fact that it’s rare is hard in a lot of ways. So like one and like we said, it took us a year to get the diagnosis. Um and it’s kind of a miracle that we even did get the diagnosis. I think that it is that we live in the twin cities of Minnesota and the University of Minnesota is actually one of the world’s leading like hubs for this disease, which we did not realize. But I truly believe that if we lived in a different state, they probably wouldn’t have even tested him for this disease because it’s often a childhood illness because it’s genetic. Um So there’s that piece just finding the diagnosis is a big deal. But then the other piece is that almost everything you do, you’re a guinea pig. So he’s one of the oldest people actually in the world right now with this disease because it has a really low um age of death. And so um there are things that they have had to try on him that they’re like, we don’t know how this will go, no one has ever done this before. And we just have to sort of say, ok, you know, or they’ll come back to us and say, well, what do you think we should do? You know? And not in, in, in a, not in sort of a beautiful collaborative way more in like a we don’t know, what do you think? Kind of way? So, yeah, so there’s that piece, there’s the piece of like other people not quite understanding. I remember when he was first diagnosed. Um Someone saying, oh good. It’s just anemia perfect. So he can just take some like iron pills. It’s like, oh no, no, no, no, that’s not what this is. So, I mean, for better or for worse, you know, because of the fanconi anemia. He has gotten a number of cancers and people get cancer, right. They understand cancer. And so at least with that part, people are able to sort of support and rally and all of that because they get cancer. But the underlying piece of it all, they don’t, they don’t get and if they don’t understand it then they don’t know how to better support you or Yeah. And uh yeah, that’s, that’s a lot. That’s a lot. Um And, and you’re, you know, you’ve mentioned that it’s been 13 years. Yep. And it’s been extensive, um, you know, and you’re, and you’re open and about sharing on it on the podcast and in your social media and, and in so many ways, like a lot of times I feel like maybe you’re living this waiting for the other shoe to drop kind of life, um, with Sean’s health and, and nevertheless, you persist, right. So it’s easier said than done though, then when you kind of know that and expect that more shoes will be dropping in your lifetime. Um What are like, how, how do you cope with that? Like, what are your fundamental pieces that go into these moments that help you and your family, your daughter like, yeah, yeah. How do you do this? Yeah, good question. I mean, part of the answer is just you have to, right? I mean, there’s just like, not, not a option. So we just do, but I will say that I have like really built up my tool kit in the last couple of years. So about two, almost three years ago now, I actually like, I quit my big job to launch the negative space, which is my nonprofit full time. And at that time, I was like, I’m gonna be living my dream and I’m doing this thing and actually I had probably one of the worst mental health years of my life. Um and it was because I had been before then working 40 hours a week parenting, caregiving trying to do this business on the side. Just go, go, go, go, go and never had a had time or space to process anything. And suddenly there was more room and space in my life. And all of a sudden all of the things that I had just squashed tracked down were like, sweet here we come. And so I was like, why am I having panic attacks? Why am I feeling like, why, why, why? And so I spent a lot of time that year really trying to like build my toolkit because I know is this is not, it’s not over, right? Like there more crises are coming. And so I have a lot of things that I do like on a daily basis and then things that I can sort of pull out of the bag when I need to. Um So just a few things, I mean, one is I got this thing, I’m not selling any of these things. These are just things that I have found, but one of them is called like the Apollo Nero. Um and it’s this like little bracelet that I wear on my ankle 303 7 and it’s all about your nervous system because I just know my nervous system is just like toast, right? Like I know that I am in fight and flight all the time. I know that that’s not good for me. And so I started looking into like, what can I do about that. Um, knowing that my life itself can’t change. So I have to figure some things out. Right. And so, um, the bracelet sort of just buzzes. It’s, it’s the same concept of it. Like, if you have a purring cat on your lap, it’s good for your blood pressure. So, same thing. And you can choose different, um, settings so you could choose focus or social or it’s time to go to sleep or calm. And that has just been, I mean, I think, I think I like that for three reasons. One is like when you’re panicking or you’re feeling not well and you can feel helpless and I, and the fact that I can, like, turn on something like give. Exactly. Exactly. If you feel empowered the other, another thing is that it makes me sort of stop and think like, what am I feeling in this moment? And what do I need? How do you label it? Like, I’m trying to get better at that too. Like, what is this feeling? And so even that, like, the categorization of it helps. And then third, I think it truly works. Like I really, I really do. Um So that is just like a, it’s sort of like my little security blanket that I just, so you wear it on your ankle, it’s always on or you have to turn it on, you have to turn it on, you can schedule it to have it. Like I could say every day at three o’clock I get sleepy. So, have three o’clock be like, I have, at nine o’clock is, like, go to sleep time. So it buzzing. I’m intrigued. I love it. I really love it. So, so anyway, that’s just like one thing. Right. But it’s a way that has helped me, you know, sort of support my own well being. Um, and then just little things, like, I really just try to like, how can I make my daily life, like, just an inch lovelier, right. So I work here at home and so like, I just got this like little fountain from my office and like I walk into the office, I turn the fountain on it sort of cues that this is the start of the work day at the end of the day. I unplug it and can I cues that? You know what I mean? Like things like that, like I’m super into plants right now because I think it’s a thing that I can just do and I don’t have to leave the house, you know what I mean? Like I can do while I’m here and it’s not on a schedule and it just makes my house lovelier and it’s just something I can take care of that. Like, you know what if it dies it’s fine. Yeah, stakes are lower. Yeah, exactly. I used to have a garden called The Garden of Neglect. I was like, man, look at this thing. It’s thriving all on its own. Like, it’s amazing. But we’re gonna try that. We got some planners at Costco. We’re going to try to do some, some things that we can eat, you know, and I, and stuff, but I love the fountain. I love, you know what, I’m just hearing you. Like, it’s obvious to me that you have, like, tried on and paid attention and you’re like, and I, I like that because I did something similar. I was like trying on different things. Like people would talk about something. I’m like, well, maybe that works. Let me try that on almost like clothes, right? Like things work different for other people. Um And that you have put this great tool kit together. Um That’s amazing. Well, let’s let’s talk about this. Um Let’s first talk about the term the negative space. So because I, I love that story behind it. So when did you first realize that you were part of this like invisible family caregiving army? Where did this all come from? Yeah. Yeah. So I remember very clearly I went to a uh support group for spouses and partners of people with fanconi anemia, right? So this is a teeny tiny niche group of people in the world. And I was like, these are my people, right? There’s like eight of us in the world and these are my people. I’m here with them in person and the social worker was like, how’s everybody doing? And everyone was like, I am just blessed and I’m grateful and I’m happy to be able to be in this role. And I was like, where am I like? Am I in the twilight? I am in the room like what is happening? And it struck me that number one caregivers don’t talk about being caregivers enough. And when they do, they feel like they have to bright side themselves, they have to like, roll it in this toxic positivity. Um And I think there’s a, I’ve spent a lot of time thinking about why this is. And I think a couple of reasons one is I think because we feel like I’m not like, like, you know, 10 years ago, me might have been like, Allison, you can’t complain on the day after a mos procedure. He’s the one that’s bloodied advantaged. What do you have to complain about? And now I know I can. Right. But I think most caregivers feel like they cannot because there’s no like physical obvious thing that happened to us. We know that’s different. We know that I experienced trauma, it’s invisible. And so, um, so I think that’s one piece is we feel like we’re not the one who got sick or had the procedure or whatever. So therefore we can’t complain. I think the other thing is that people have spoken their truth in ti at times and that makes the listener uncomfortable. So if I said to someone, I watched my husband like his blood drop on the drip on the floor yesterday. And it felt to me and I felt this way and I felt this, the listener gets uncomfortable. That is a hard thing for someone to hear. And so often the listener then bright sides back and says, well, at least you weren’t the one that at least, at least, at least, at least. Right. Oh, no, no, no, at least. Exactly. So then if I put myself out there in that way and someone came back at me with an, at least, well, I’m not gonna put myself out there again. Right. So that makes me just shut on down. And the next time someone asks, I’m gonna say, oh, well, I’m just so blessed and grateful to be in this role or I’m gonna say it’s fine. Right. And so that’s what I really started to realize that we are all out there and we’re here and we’re having a hard time, but we’re not talking about it and we’re not getting the respect and the nothing changes if we don’t talk about it. And normally it’s like, oh, it looks like this is working, this, this, this caregiving crisis that we have is not really a crisis because nobody’s really complaining about it and they seem ok like they’re fine. Yeah, because they tell me they’re fine. I ask. And they’re fine. Yeah. So I started to realize, oh, my goodness, like we are hidden. And so I started writing about it. So I started writing about like, what is this really like? So this was back in the day when people had blogs and people read blogs. So I started a blog, I know, I wish people still read things, their attention span blog, do it, do it. So did that. And people started just saying, you know, like, wow, like you have my words or I didn’t know I was allowed to say this, I didn’t think I could talk about this, right? And so I realized like there is something here. Um So I knew I wanted to do something and then it was actually my, I was inspired by my shower curtain. So my logo is my shower curtain from my shower curtain because one day I was in the shower and I looked at it and it has like these sort of like rows of diamonds. And what I noticed is that in between the diamonds is a different pattern. Like if you like the witch, the white space, what was that you were thinking of? Like it’s like a witch or a rabbit, right? You look at it this way, this way it’s a rabbit. Exactly. So this is like when I was looking at the diamonds, I realized that in between the diamonds, the white space was making a whole new pattern. And I was like, what’s that called again? I was like, oh that’s called the negative, that’s called negative space in art. And then I was like, wait a minute. That’s exactly what caregivers are that we are in the background of the picture that we help make up the picture. And yet nobody really pays attention to us or notices us or acknowledges us. And I was like, oh my goodness, that is, that’s it. That’s it. Like we are in the negative space. And if we left the picture, I mean, imagine if all of those caregivers poof just like disappeared. Oh man, it would all fall apart, it would fall apart fast, fast. But at this moment, like we’re this part of this picture that nobody even like no like sees or points to or realizes that we’re there. We are in the negative space. So it’s from that artistic concept of what’s in the background of the picture. It’s I love that. II I the, you know, and I think there’s a whole concept too of like all the invisible labor that we do as caregivers and even like as moms and wives and all of that. Like I’ve lately started my husband’s amazing. Like he is like, meet me in the middle does helps with chores, chore play like we have the whole thing happening. Um Acts of service. He gets my love language. But at the same time, like there’s a lot of things that I do that. And so every now and then I’ll be like, he’s like, what are you doing? And I’m like, oh, I’m just doing some invisible labor here of, um, you know, getting Easter gifts for the kids or whatever it is like that. And so he started laughing, he’s like, I’m gonna start what you talk, I’m gonna start talking about my invisible labor. I’m like, OK, go ahead, go ahead, start, start talking about your invisible because then we can make it invisible. But I think we all have to kind of do that everything. Um Yeah, it’s, I mean, I, I remember like, you know, pushing mom in on the wheelchair and like dragging her um walker behind me so that once we got to the spot she could do the walk. And I’m like, you are like invisible and it’s just so so crazy. So talking about it and I think blogging was super helpful for me too is like the more he talked about it, the more we could process it and give us the space to do that and, and think about it. Um And what I found is that I saw myself a little more clearly like the more transparent I was and so be being vulnerable and opening up space for that. Well, if you feel like now Alison, like if you feel like someone’s bright siding, you do you have something you say to them now, like as your negative space warrior, you know, like, you know, like how do you, how do we fix this? Yeah, I mean, so part of one, um one of the mission, parts of my mission is, is also my big mission is to change the way caregivers are seen and supported. And so half of that is the direct services that I provide to caregivers. But the other half is I know like it’s not enough for me to just have them feel great when they’re engaging with the negative space because they’re in the world the other 98% of the time. And so the other part of my mission is to really get out there and be educated folks. And so really trying to say to people, to medical professionals, to medical students, to the the regular old person who’s, you know, is encountering caregivers every day to, to really be explaining to them like this is not helpful, here’s what’s helpful instead. And so, I mean, I’m sort of trying to do that on a big picture and level. And in my podcast, the at the end, we always end with a, hey supporters, if you’re listening, here’s how you can support in this way. Um And so really just sort of trying to educate the masses about it and to help people realize you’re doing that out of your own discomfort. And so to pay attention to like, how are you feeling? Like if someone says I went through this hard thing yesterday and you start to notice your own emotions coming up to recognize, like, ok, this is about me. I can figure that out later. But what does Alison need right now? What can I say to Alison? That’s helpful. It’s not about making me comfortable, it’s about making her comfortable right now. Tell me about this hard thing. Yeah. Like in that thing yesterday where you were watching your husband his procedure and watch the blood drip on the floor. Like what? And telling somebody about it, what could they say? Like, what? Let’s give them some language. Like, what, what could they say if you said that to a friend and then, yep, I think just responding like that sounds really hard. Period. That sucks. Yeah. Yeah. Or I imagine that you today are really tired, period, right? And, and even even something it could be, you know, I imagine that was a lot for you. Would you like me to come sit with you? Would you, you know, I’m gonna send dinner tomorrow night. I am, you know, like something not, you don’t try to fix it. You don’t try to clean it up. You don’t try to sympathize. So you don’t try to say, oh, I am, I would guess. Or I would, you know, like I one time cut my finger and so I’m sure that I know what that’s like, you know what I mean? Like don’t try to make a connection to something, you know, I mean, somebody did say something like I had one moes procedure and I still feel traumatized. So I cannot imagine what 100 and 50 feels like that, that feel like they got it. But I think that for all the hard stuff, a lot of it is we just want to be seen and acknowledged. And so just to say like, this is awful. I’m sorry that this is happening to you, period. I mean, it’s similar, I think we’re getting better maybe kind of about like when people die and what we say when people die and like, what’s not helpful to say is, oh, plays right? All that stuff and, and even, you know, after my parents passed, I was like, what, what did feel helpful? Like what was it was kind of thinking about? I don’t know, I think you and I are just thinking about this all the time, like in caregiving and how we can message it and educate other people. Um And your in sickness podcast is a huge help for that. So talk about you, you co-host it um with another care partner. And I really like the title because I, you know, we all encounter some things in our marriages that we didn’t come in, we didn’t intend. Um And I have often thought that it’s like in sickness and health, right? Like the phrase of that, the marital vows. But wouldn’t it be amazing if we like popped open a checklist and it was like you, like you had to really think about all the in sickness and in health. So I think about like all the different mental health things, the addictions because I don’t know about you. But like when I said those vows, I’m thinking cancer, I’m thinking and I’m like, of course I’m going to be, you know, of course, of course I’m going to be there with my loved one. But no, but then it’s like even that one expanded, open this many procedures. This is, you know, like, I don’t know, I feel like it should be a big long checklist like pages. Yes, I often say if there are people, like if someone is dating someone and you know, I kind of feel like and they’re trying to decide like, is this the right person? I like to say if you need a bone marrow transplant, is this the person you’re gonna want to take care of you? How are they going to be taking care of you if you need a bone marrow transplant? Which is I think like the worst possible thing a human can experience. Um And he had that. Yeah, we know. Well, you had that too. Thank you. Yes. Yes. So I just think like it’s cute to be like, oh, I want to hang out with this person and go to the park and go to a concert like fun. Cool. You can do that with anybody. What if what if you’re going through chemo? Is this the person, how are they going to be through that? You know, and I think that that should be part of the marriage counseling. My sister and I, my older sister is divorced and, and she talks about like some of these things that we, people should do when they’re dating and she’s like, I think they should have to put together a bicycle together or, or IKEA furniture, IKEA furniture plan a trip. Like it should be like all these amazing race type of things. But we um so yeah, we should definitely add that. And, you know, your recent episode, I know that you’ve been promoting is do we play it safe or live by YOLO and I for caregivers that are, have a chronic situation that they’re managed. I imagine that it is hard to plan. Oh, absolutely. Absolute. I mean, we just never know day to day how things are going to go. Um And so we talked about in the episode that we’re trying to figure out because my daughter’s graduating from high school and we take a trip and like, I don’t know, we don’t know, it’s very hard to plan and, and to know like how, how he’s gonna be and, and all of that and, and on a day to day and, and then all those, those pieces about, you know, even like little things like, should we be out, should be like live in life because life is probably going to be shorter. Should we be doing it? But then also, like, what if that causes this thing and then we’re tired and then there’s germs and you know what I mean? And so it’s, it’s such a, it’s such a, a pull like a, you know, we’re, we’re torn between those things and try to find the balance between them. But it’s hard. Well, the podcast does a great job of, of unpacking all of that with, um, with another care partner that, because it’s, it’s different to be a, you know, to be a caregiver for an older adult, to be a caregiver for your partner is not the same. Yes. And my, my cohos is a man. And so I think that’s also another even more invisible perspective, um, is the male caregiving perspective. And he also was in his forties and his wife has, um, has me and chronic fatigue and migraines and pots. And so it’s a different perspective as well. But I think that, um, yeah, I think it’s where we complement each other in that, in that way. And it’s nice just to have a man out there talking about caregiving as well. Yes. Yes. I trying to get more men to share their stories. It is a challenge. It’s, um, but they’re out there, there’s lots of, lots of people out there. So you’ll, you’ll find more of those here too. So, um, well, yeah. And listening to your podcast is a good check in for me because, and I think anyone really others that support family caregivers so that we don’t forget what it’s like to live in the day to day. And also like, I mean, I’m sure I’m guilty of bright siding. I’m sure you know, of that part of it is maybe in my DNA, like half, half glass, half full all the time. Um, but it is a good check. I think just to kind of like, fix our language, hone it in a little bit, like, get the perspective back. What do you think that your daughter maya is taken away from this experience or do you not even know yet? You’re just like living it? Yeah. Yeah. Um, I think, I mean, I, I hope that all three of us have, I see this as like, like we take advantage of like, we, I think that we don’t, we don’t let some of these like little special moments go by without acknowledging it. I think that we all sort of are like, you know, see the little moment and, and, and whereas other people might just be like, oh, that was just like a cute thing between the two of you. We’re like, oh, no, that, that was a big thing. That was a big deal. You know, I think that even though our life is very wild in some ways, in other ways, it’s much quieter than others and, and in the lives that I think the life I think we probably would have had if this hadn’t been, I think he and I would have been a different career paths and we would have just been like, busy, busy, busy and just doing, doing it. We would have had, there would have been more kids and you know what I mean? It just would have been like a lot rowdier, I think. And so I think that the three of us are very close and we’re at home a lot and we’re with each other a lot. And so I think there’s that, um, I mean, I think she’s, she’s got a lot to process as well, you know, I mean, it’s been quite a life for her and so we just have done our best to say like you’re part of the story too and you too and we’re here for you and there’s, even though, like, all the stuff is crumbling around in this way, like that doesn’t mean that we can’t be here for your stuff as well. And so, but it’s, it’s hard to make sure that, like, she’s ok too, you know, in the midst of it all. And a teenage body life. Yeah. Lots going out, lots happening in that, in that stage. Um, and exciting. It’s exciting time. It is. Yeah. Yeah. My baby is graduating from college. So he’s my youngest. Yeah, from UG A. So we joke that. We have a good, um, powers of attorney. We have my daughter’s a nurse, we have our medical power of attorney and my son’s pursuing career in finance. So we’ll have our financial, we’re like, look at that. That’s amazing. So, um, only a caregiver would think that way. Right. Yeah. Yeah. If you could wave a magic wand Alison and like, you know, what would you want to be, what, what would you want to be true for family caregivers that might be in a similar situation or for yourself and working family caregivers like you’ve lived that part of your life too. Like what do you, what do you wish was true? Oh, I only get one wand. You can, you can do as many as you want. Yeah. Such a good question. I think, I think the big one would be that everyone’s eyes would be open to the fact that there are so many of us that this is huge that what we’re, what we’re doing, how much time and energy and soul we all put into this, the impact it’s having on us. Um I just sort of wish all of a sudden that that was like that we didn’t have to spend so much time convincing people of this. This is like another task on your plate. It’s like not only do we have to like juggle all this and live your life and, and navigate a rare disease and do all of these things. But, oh, and, and you’re going to have to advocate, advocate for these 53 million in the US because, like, nobody gets it. So, add that to your plate too. Exactly. Exactly. So, I mean, that’s, you know, that’s part of what I’m doing in my, in my work now is, is advocating in that way and I just wish, like, it makes me feel gross when the way, sometimes the way we have to advocate is by telling the higher ups that like, well, you know, like this person, if they caregivers sick, then the er, visits for the patient are going to go up or, you know what I mean? Sometimes we have to use some of these like numbers that are to their purse strings. Exactly. And I want to just say, have them be like, oh, humans are suffering, we should change something. Right. That’s what I want them to, to recognize. But unfortunately, it’s not that easy. So I wish that the eyes were all just open and then everyone was just saying what could we do? Because then I would be right there saying I could tell you let’s do it. But instead I feel like we have to spend a lot of time just even convincing them that we are a population that needs support and that feels, it just feels like degrading like that. We’re doing this terribly hard thing and it’s unseen and unappreciated, just feels like a double whammy. Yes. Hm. Well, you have this nonprofit, you’re doing amazing stuff with the negative space, but share a little bit about like for the folks listening, like the services, the products that you offer, like how, how can they take advantage of it? How can they help you like, elevate it like all of that? Absolutely. Thanks. So, the direct services that we provide to caregivers. So I do one on one coaching because in my previous life before this, I was in the education space and I coached coaches and trained trainers and created content. And so it was like a kind of a perfect comment. Yeah, exactly. Um So I do one on one support for caregivers. Um I, we have the podcast and then based on the podcast, we have a virtual support groups that are every other week. And so it’s, they’re just like the most beautiful spaces. I just love it. And so like yesterday, the podcast came out and it was on that topic that you mentioned and then this Sunday night, that’s what the support group will be is on that topic. So that way if someone like really, like listened and loved it and really had some things to say or, or maybe if it’s a topic that they feel triggered by, they can skip that time, so they kind of know what is, what they like, you know, pod club almost like it’s like a book club. But you only have to listen to an episode. It’s amazing. And even if we say you don’t even have to listen because most people have experiences with those topics anyway. So we can say it’s not a prerequisite. We don’t have to give them homework, you know. Um So we have the support groups that are virtual, which are great. Um And those are every other week online and then, um I have, I try to be on social media doing both, you know, pictures of like yesterday, like here’s what this looks like to be a caregiver today. So really kind of behind the scenes so that people can understand caregiver life, but then also education type things, right to say things like, hey, it’s National Caregiver Day, here’s five things you could do for the caregiver in your life. Um And so like sort of a combination of those things um as well as sort of building community so that people can, I can say like, what do you all think about this? And it’s a space for people to talk about it. Um I have these uh caregiver gift boxes. So I, I talked about that. The theme is I’m part of the story. And so those come in two different sizes and you can, you know, certainly get one for yourself or if you’re listening and you’re like, I know a caregiver and I don’t know what to say or do you know, you just send the box, like I’ve already done all the work and all the words um for that. And so those are gifts. Um We also, I’m super excited right now, have a partnership with Hope Lodge through the American Cancer Society. Um The Hope Lodge is a place where people who are experiencing cancer can stay if they need to get treatment far from home. And it’s kind of like a Ronald mcdonald House, but for adults. And so typically when a, when people check in there, the person receiving treatment gets like all this swag and the caregiver gets like a folder of paperwork. And so we got this grant. Um so that the next 142 caregivers who check into the Hope Lodge will get one of our, I’m part of the story, love that so would love to have more partnerships like that with different organizations just to help caregivers be seen and acknowledged. Um And then, so that’s sort of the, those are the sort of the services that we provide. But then in addition, um I do a lot of speaking and advocating. So I want lots of committees trying to make changes in health systems and in the state. Um And then, but also like I’m available for speaking at conferences or to medical students or medical professionals, just really trying to use my story because it’s different if you just get up and name statistics. But when I have pictures of like this is me, like sleeping in a chair in the, er, this is, you know, this, this is like, actually happening raw, the raw caregiving, which is going to inform them and their careers and their jobs and their, all the things. Yes. Yeah. Yeah. So you can find me. The website is the negative space dot life um podcast. You can find in sickness. It’s anywhere you find your podcasts and I’m on social media as well. So space life. Yes, I’m going to link to all of that in the show notes. OK. It’s time for the prompts from the, just for your daily self care journal, which the goal of this was for people to try to think about themselves and infuse more health and happiness into their life because for caregivers, a lot of us are guilty of thinking about others, everybody else, everybody else. So, um so it takes some practice. So writing and yet I didn’t want to make it hard. So they’re just little prompted questions. Um OK, for your marriage, I get this is a good one. How do you keep the romance alive in your relationship? That’s hard. I think for anybody who’s been married. Yeah, for 20 plus years. But yeah. Yeah, that’s a good question. Um I think that sometimes I have to like almost strategically like take my caregiver hat off, you know, because I, I tend to be like, how’s this? How’s this? How’s, how are you feeling and when’s the last time you took this med blah, blah, blah. Right. And I mean, that’s not romantic in any way. And so sometimes I have to like, like, like. Right. Exactly. Exactly. So I have to, like, intentionally be like, nope, that put that part away. Um, and then, and just, like, engage and, and sometimes it’s like about leaving the house because, you know, if we’re here a lot and you know what I mean? Like if we’re just in the same spaces where typically medical stuff happens, it’s like, ok, let’s go out into the world and even like taking a walk sometimes, you know, just like trying to do things that are get out of the routine um and put us in different spaces that it’s not, you know, because otherwise we just end up going to the doctor and talking about doctors and there’s nothing romantic about them and I think the trying new things is a good, is a good thing. Um And it kind of heightens all your senses. I know I enjoy doing that. We, we love to try new restaurants or it could be ordering in. It doesn’t have to be sophisticated, but I mean, it does take what I heard you say though is it takes intention like it’s, it’s not just gonna just magically happen. Like lately I’ve been thinking like, when’s the last time I kissed my husband? Like I’m going to start, I need to see the kiss, like, every time I walk by with, at least in the beginning and the end of the day, like, hey, I, I still feel something for you. Right. Yes. Oh, I know. It’s, it’s a lot, um, what’s your favorite time of day? And why? So I have lately become, like, really into, like, evening, so, like 87 38 8 30. Um, because it sort of feels like, I feel like during the day, I feel like I should be doing things. And that’s the reason when I get to that time, I’m like done no more and I’m all about all the coziness. And so I have an electric blanket that is like my favorite thing and I turn on the electric blanket and I get in bed and I am getting to my old lady stage apparently because I’ve started embroidering, um, which it’s not like little doyly. It’s like very cute, you know. Are there kids for this? Yes. Do I need to try this? You absolutely need to try. It’s 100%. Is there a brand or there’s all different kinds of brands I can send you some but like the, so I just, I didn’t know how to do this at all and I just found a kit. Actually, I bought it as a gift for someone and then it was still sitting in my house because it hadn’t been, it wasn’t her birthday yet. And then I was like I’m going to do it myself. So that’s how it all happened. But now it’s just this, like, very soothing thing. And so I used to read in bed but now I listen to audio books and so I, like, I’ve got the ear buds in, I, the dog, like, lies at my feet. I’ve got the electric blanket. I make the tea and I stitch and it’s so lovely and it just feels because I think otherwise, no matter what time of day it is, it feels like I should be doing something. And for some reason, like, by that time I’m, like, nope done, I’m done. You’re off duty. Yeah, I’m like, I’m off duty at nine o’clock. Don’t bring me the forms to sign. Don’t like, no, I’m off duty done. Exactly. I love that. But what a nice ritual that you have. And I’m, yeah, I’m intrigued. My daughter’s been knitting. I think, I don’t think she’s doing embroidery. She was not telling me a lot about it. I think it’s going to be a gift for me. I think so. Yeah. Um, and I haven’t seen her. She lives in Chicago so I don’t really know what it’s all about, but I’ve been seeing this Little Wobbles. Is that embroidery? What is that? I think that’s crocheting. Knitting. I, I don’t even know. I used to do cross stitch. I had this. So this embroidery is sort of like cross stitch. But without the little Xes. Ok. So, yeah, I have a couple of Christmas ornaments that I have done in the past. So I’m definitely, I love a diy type kind of thing. Like I was a scrapbook. Um, me getting my hand into stuff, like doing like crafts huzz. I love it all. Um, ok. Where would you go if you want a dream vacation? Oh, my brain went to like tropical water. I love being by large bodies of water. Um, I’m in Minnesota and so we have Lake Superior and if I had my wish I could just live on Lake Superior and just stare at it every day. Um, so great lakes are amazing. I don’t, I don’t know if I’ve seen Superior, but we have the best one. Probably superior. Yes, it’s the best. It’s superior. Yeah, exactly. That’s why. Yeah. Um, I mean, it’s like the ocean. It’s like being by the ocean. And so I just feel like I’m a different person when I’m on the water when I, that’s why I got that little fountain from my office because I had a moment where I was like, I want to move to Lake Superior and I was like, can’t, I guess I’ll get a fountain instead. So I think I would in this moment because we’re still sort of in winter here. I would go somewhere tropical, like on the ocean beach, warm cozy bed that, you know, room service with your electric blanket. You’re good. You’re good. I hope I wouldn’t need it there in this tropical location. But I did. Yes. Ok. Last question. If you could choose one superpower, what would you choose? I think I would choose to like what a caregiver answer. So this is gonna be, I would choose like immunity. Like I hate getting sick and I hate worrying about getting sick. You know, I have a lot of, a lot, like little, little people in my life that I love to be around, but they’re always sick. And so then I have to be really careful and I hate worrying about germs and all of it. And so if I could just know that, like, I would never be sick again, that would be like, that would just be amazing. So, yeah, that’s what you wouldn’t have, you wouldn’t have, you’d have to rename your podcast. Well, it’s not my sickness. I know. I know. It’s just like, yeah, I know, I suppose thinking about, do you see how that was such a good, um, selfish, but in a good way answer. Right. I didn’t realize my superpower would be to cure other people. Yes, it was that I, that I wouldn’t feel sick. You know, because again, I just feel like if I like, I get headaches a lot and I know it’s from stress and all of that and it just makes everything harder. And so I just know that I just want to feel good. I, exactly. I just want to live my life, man. You know, just let me feel. Ok, so it’s a good one. That’s a good superpower. Anything that we didn’t talk about that, you’re like, oh, darn, I wish we would have talked about this or um any just closing comments for caregivers and then remind them again how they can get a hold of you. Yeah, for sure. No, I think we, I think we covered it well. So that feels great. Um Closing comments I think and how to find me. So the website is the negative space dot life. The podcast is in sickness. Um And then I am on um Facebook, Instagram and linkedin. So, yeah, if you wanna, you know, check out the support group, do a one on one session, anything like that, you can check head to my website and find out more information for that or if you’re listening and you want to support a caregiver, you can send them a caregiver box which you can also find at the website. Yes. Yes. Do all of the above. Amazing. Well, I love their conversation. I just love it. I mean, I love your voice in this space because we need more of that. Um And you know, the, the raw parts of caregiving like showing more of that and, and I need to hear more of that. So I watch and, and learn from you. So thank you. Yeah, absolutely. I love that. There’s, we need as many of our voices in this space as possible. So it’s great to connect with you. Thank you.

If you’re a fan of this Happy Healthy caregiver podcast, then you’re gonna love confessions of a reluctant caregiver podcast, which is also part of the whole care network family. Join sisters JJ and Natalie who offer a candid unfiltered space to confess the good, the bad and the ugly of and a caregiver. From heartfelt confessions to insightful guest interviews. They’ve got it covered. You’ll laugh, cry and everything in between. Tune into the confessions of a reluctant podcast on your favorite podcast platform or visit confessions of a reluctant caregiver.com.

Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole Care network. As always show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com. Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the Just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue, maybe while you’re subscribing, consider leaving a five star rating and review or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as happy healthy caregiver. And until we meet again, please take care of you.

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