Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Hi, how are you?
Justin: Good morning.
Allison: Good morning.
Justin: Yeah, doing all right on Saturday morning here. Sarah’s birthday was last weekend.
Allison: Oh yeah, that’s right.
Justin: And already, if we weren’t in a global pandemic, you know, she wouldn’t have the energy or all that for any sort of big celebration or anything. But, so there’s already kind of, I don’t know, previous birthdays have still felt kind of isolating. And so it’s even kind of more so now. So we were able to have my parents over and then along with her parents that we’re living with. So all six of us were able to kind of have some cake out on the deck in the evening.
Allison: Oh, nice.
Justin: The weather was nice. And so that was a really nice kind of thing to do, a kind of experience that we haven’t with other people that we haven’t had in a long time because of all that’s happening. But even that was a pretty exhausting thing for her.
Justinn: And so there’s been days and days of her feeling pretty fatigued from that. And yeah, she’s crashing kind of hard from that. So it’s hard because you want to do something fun like that, but it’s, yeah, there’s always, you never know how extreme the crash is gonna be. And there’s always, it’s one of those things where you’re always weighing the cost of that. But I think it was worth it.
Allison: Yeah, it makes me think about one time you said the thing about how now people are doing all these creative things that you’re like, hey, we could have done those creative things for people like us a long time ago, right? And so I think I saw on Instagram, you guys got one of those like honk, it’s my birthday signs or whatever, right? And so it’s funny because like now it’s like, a lot of people are doing that kind of thing.
Allison: And so people now kind of maybe get it a little bit, a little bit more of what that might feel like. I feel bad for all the people who have, like myself, who have like winter birthdays. So what are we gonna do? I don’t know.
Justin: Yeah, that’s me as well, so. How about you? How’s your week been?
Allison: Couple of things. One, Sean had a big old, another procedure. He had three skin cancers removed, which happens often, and it’s a pretty heinous procedure. And so it’s been a week of him recovering and having a swollen face and a big old bandage on his head and all that stuff. So there was that. And then I also, I think I talked about this a while ago, but I just started sort of a new version of the job I’ve been doing.
Allison: So I just finished my second week of that. And so that’s just to sort of add an extra layer now because the big change is I am an employee, whereas before I used to be an independent contractor. And so it’s just made me really think about this whole like caregiving and working thing.
Allison: And I was hoping maybe we could talk a little bit more about that today, because I was really fortunate. I started the job as an independent contractor 10 years ago before Sean was diagnosed. So I had lots of flexibility already going into like all the trips to Mayo to try to find a diagnosis, and the bone marrow transplant and all of that. And so his entire illness, I’ve been an independent contractor. So this is a very different thing for me to now be sort of like on the clock.
Justin: Right.
Allison: And so even for his appointment on Tuesday, you know, it was day seven of his, of my job. And it was like, here’s this full day procedure that he’s going to have. And I had to figure out, like, I don’t know, maybe PTO accrued. I’ve only been here seven days. Like, and before I just wouldn’t schedule something on that day, and it wouldn’t be a big deal. But that’s a whole new weight that I am carrying, that I recognize a lot of caregivers carry all the time, because they are employees.
Allison: But I’ve just had to think about that a lot lately about this transition, and what did I ask for as I took this job? And I asked for like, I need to work from home all the time. Which fortunately, like, everybody’s at home right now. But I just sort of said like, forever.
Justin: Yeah.
Allison: I need to be able to work from home. But I think the big thing now is more of that. Like, these procedures and these appointments and stuff, they come up all the time.
Justin: Yeah.
Allison: And if I took a little PTO hour every time there was an appointment, I’d be out in a hot minute, and then what happens? You know?
Justin: Yeah.
Allison: What’s your… Because you’re a salaried employee. Like, how does that work for you when you need to go to an appointment or whatever?
Justin: So I’m not salaried. I’m hourly. And so, yeah, no, I’ve been at my job. Well, I started the job that I still have when I graduated college. So I’ve only had one job, which is, I realize, a very rare thing these days. So by the time Sarah got sick, I’ve been there, I don’t know, seven or eight years, maybe. And so I had some, I was established there. And I also we’re fortunate that our sick time doesn’t expire every year. It rolls over.
Allison: Oh nice.
Justin: And so even now, I have, you know, a lot of sick time built up. And so I’ve always been able to like have that sort of the PTO covered for it. So it’s just been, you know, asking for that time off, like, you know, early on. It was, yeah, I think there was that kind of slight apprehension or wanting to kind of be careful with, you know, I don’t want to seem like I’m asking for too much time off. But also I’ve had, my managers have always been, and kind of the culture in general where I work is pretty flexible and kind of as long as the work is getting done, that’s okay.
Justin: And it’s not like you need to be in the office from, you know, 9 a.m. to 5 p.m. you know, you can shift that a little bit. So it’s never, that’s never been super difficult for me, like, actually taking the time off aspect. It’s been more the kind of getting over my own kind of, I don’t know, feeling guilty for taking time off work, as much as like, I don’t want work to be a thing that I feel guilty about, because like, that’s just my job. It’s not like my life. But yeah, that took some time to be able to be like, and also, Sarah would just sometimes, when I was working, I know for a while I was working full time, well, she was also pretty much bedridden. And so if she was having a bad day, you know, she might text me and I would just have to go home.
Allison: Yeah, yeah.
Justin: And so, yeah, thankfully, I was able to have that flexibility to be able to do that, yeah.
Allison: Did you from the start, since you had worked there first and had been working there for a while, and then she got sick, what was it like for you in talking to your, like, did you tell your employer? Did you tell your coworkers what was happening? Or were you just sort of like, I got to go, you know, like, what was the communication like with that?
Justin: Yeah, I, one, I’ve always been a pretty, like, separate my non-work life from my work life. So it’s like, I don’t have, you know, I’m not talking to my coworkers and telling them everything about what’s going on. And so at the beginning, I probably shared as little as I needed to.
Justin: It was, you know, I need to take my wife to an appointment kind of thing. As time went on, I think maybe like the first time it really sort of came up is early, early on, we took a trip down to Seattle, which is a couple hours from us to see a specialist to kind of nail down the fibromyalgia diagnosis. And so at that point, we knew enough that I think we were, we were at the point where it would be like an appointment and then it would be a month before she had the strength to go to another appointment.
Justin: It would be, you know, two weeks of her in a dark room in the fetal position. And then by the end of it, you know, she had just enough energy to leave the house for another appointment. And it was just kind of this.
Allison: Then it would start all over again.
Justin: Start all over again. And that was, that was incredibly hard. But so we knew that this was going to be a big hit for her. And so I think I took probably the week off from that, the next whole week off. And so I think for that, I, you know, explained probably for the first time that, you know, my wife has these chronic health problems, and I’m going to need to take this week off because it’s just going to be a huge hit for her. And sometime after that, I think I had the conversation with my manager that, you know, this is kind of an ongoing health thing. And so I’m going to need to sometimes take an afternoon off or take time off for appointments and all of that. And that was, you know, fine that they were okay with that. And it’s, yeah, it hasn’t been an issue.
Justin: And it’s been the kind of thing where periodically, whether it’s, you know, at my like a yearly review kind of thing, I check in and see, you know, is this still working out that I’m doing this? Because being a generally anxious person in general before all of this, like one of those constant anxieties is, is my job still going to be flexible in regards to this? Are they going to no longer be accommodating?
Justin: And then it’s, there’s the spiral of, okay, they’re not. If I lose my job, we don’t have health insurance. And that’s a big leap to make. But it’s yeah, not helpful.
Allison: It’s totally understandable, though. It’s absolutely understandable, because I think for either of us, like the health insurance, we need that, right? And so if the job is the thing that ties us to health insurance, and the reason we need the health insurance is also the thing that might make us lose the job, right? It’s this really vicious cycle.
Justin: Yeah.
Allison: Yeah. I think about, I got to be on this week, IanaCare, the app that we’ve told you about, has had a webinar for working caregivers. And one of the other people who spoke said that he had this high power job at Nestle, and three different times thought he was having a heart attack, because he was having like a really severe panic attacks because he was caring for his wife, and he had not told anyone at his job. And he had been there for decades.
Allison: And one of his coworkers like found him in the bathroom, like having this massive panic attack, and said like, why didn’t you tell us? And so I just made me wonder like, how often do we keep, do caregivers keep the information about what the rest of their life looks like from their work? You know, and you think about like, if you have a cubicle and you have children or pets, right?
Allison: Like you’re gonna have a little picture on your screensaver or your desk, and that might be something someone says, or you might say, oh, like, my kids got a concert, I got to go. But we don’t have those same subsystems in place to be able to just say like, this is my spouse, and they have this thing, and therefore, or my parent, like the, for people who are caregiving in a way, I think there isn’t the same, I think it took us a long time to get there for parenting, and there’s still a long way to go. But I think caregiving is still like in the dark ages for that, as far as people talking about it in the workplace, realizing that it’s a thing, realizing that caregivers need that, need the flexibility, need the support, you know.
Allison: For a while for me, it was sort of like some people knew about Sean, and some people didn’t. And as you can imagine, since I’m an outgoing person, I end up often being like friends with a lot of the people that I work with, and then I’m on social media. And so the people who are on social media sort of would know about what was going on with Sean, and then some other people didn’t.
Allison: And it always felt like this sort of like who knows who doesn’t kind of scenario. And so when I just took this new role, they sent out, they wanted me to write a little blurb, like a little introduction blurb to like the entire organization, some of whom I’ve never met or encountered. And I made the decision to in my blurb, talk about it.
Allison: So I mean, it was like, you know, one paragraph, but I said, you know, my husband has this rare genetic disease. And so a big portion of my life is spent caregiving. And you know, I’m not everyone would be in that space to do it. But I just decided, you know what, I would rather just put it out there instead of because I also thought then people aren’t going to be like, why is Allison gone? Like, why? Where is she?
Allison: You know what I mean? I thought I’d rather just sort of lay that out there. And what I’m wondering, and of course, it’s going to be now a very long time before we’re all in person. But I’m wondering, and sort of waiting for a moment when someone says, Oh, you’re Allison, I’m a caregiver too. Like, I remember you saying that. And you know, realizing like, Oh, look, she’s talking about it. You know?
Justin: Yeah, I know, for me, I most by the time Sarah got sick, and I was caring for her, I kind of was in my in the path of, you know, my co-workers are acquaintances, I don’t, I’m not talking about personal life stuff with them. And so there was to suddenly make that leap to talking about, Oh, my wife is chronically ill and like, life is really hard with that. That felt like that’s way too big a leap.
Justin: You know, I’m much more of an introverted person already. And so, so that always felt like kind of a big jump. But there, over the years, there have been like a couple of co-workers that I don’t even know how it came up, but they were aware of what was going on.
Justin: And there were a few that every week or two when they would stop by my cubicle with a question or something, they would, you know, ask, you know, how’s your wife doing and all that. And I always really appreciated that. And I didn’t always want to like really get into things.
Justin: Because work also for a long time was kind of a mental break from all of that stress. But you know, even if I didn’t say a lot or get into details with them, just having someone ask, it really felt good, because the people that are aware of what’s going on, you know, after a long time, I don’t know, it feels like there’s less from those people. Because they’re just always they know what’s happening, and they know it’s hard and all that. And so you sometimes. Yeah.
Allison: Yeah. I, in fact, just reminding me, I wrote something a long time ago on this, because I’m a brand of coworker who said, just really clearly to me, like, I just never know, like, to think and tell me, would you like me to ask how he’s doing or would you not? And I really appreciated that. And my response was sort of like, it depends on the day, right? So you can’t win, essentially, right? Because it’s hard.
Allison: Like, there are some times when, like, if someone doesn’t ask, it’s like, really, you’re not going to ask them about this really important thing. But other times, like you said, it was sort of a break. So especially, I used to do a lot of training. And you know, so I’d be up in front of a room of 85 people all day with like a microphone kind of thing. And that’s almost like putting on a different personality.
Justin: Yeah.
Allison: You know? And so it was sort of this like, I am training today, so I can’t even be looking at my phone. Like everybody else is going to have to take care of it. And I’m just up here like I am the speaker for the day. And it felt kind of good to be like I’m a totally different person from eight to four. And then sometimes like at a break or at lunch, someone would come up during the training and be like, Hey, how’s your husband?
Allison: And I would just be like, What? What are you doing to me, man? Like, you can’t do that right now. And of course, they were trying to be kind. And I remember saying to a number of people, like, unless you want a crying trainer, like, I’m not going to answer that question right now, right? Thank you for asking.
Allison: And so I feel like it’s this like catch 22 because it’s like sometimes I want people to know so that they can be flexible or understand like why I’m going to miss that meeting or whatever. And other times, I’m sort of like, I just want to be like Allison, the person who does this job. And I don’t want you to have to think about that other part of my life.
Allison:I don’t want you to ask about it right now because I’m trying not to think about it, you know? And so it’s kind of a lose-lose. I don’t know.
Allison: Like, I don’t even know what I would say to people about to ask or not to ask. I think if I did, I would maybe like, and when I do this with others, I would always say like, if you don’t want to talk about it, that’s totally fine. But just wanted to say that like, if you ever do want to talk about how it’s going or, you know, let me know, but we can also skip this topic. But I don’t want you, you know, to kind of give them that out in that moment. Because you also don’t know in that moment if, how much do they want to know? You know, all the things.
Justin: Right. Yeah.
Allison: Yeah. So it’s a little bit of both. Like, you want them to know so that they can be helpful, but then also like, sometimes it’s nice just to be like Allison, the literacy specialist and not Allison, the caregiver, you know?
Justin: Yeah. Yeah. And I think for me, not being very open with very many people at work, on the one hand, yes, there was some amount of like having that mental break or something from all of the caregiving stuff, but also I think increasingly as the years went on, it was, it ended up feeling really isolating, I think, because, you know, I would be in at work all day, and there’s a lot going on in my life and a lot of really hard stuff.
Justin: And to have everyone around you just going about their day like nothing’s going on, and to just kind of interacting as nothing is going on. Yeah, so there was also kind of that like double-edged sword there. And kind of, it felt like I had kind of, it was like it was a hole I had dug and ended up in, and I don’t know that it was really something that I did to myself or something.
Justin: I don’t, I don’t know. That’s not, I don’t think the right way to think about it, but other than it was hard. And I don’t know for me that there was a, I should have done this or I should have done that, but it doesn’t matter, it’s just kind of where things ended up. And yeah.
Allison: I get that because I feel like, you know, if you’re sitting there and you’re thinking about, I just keep thinking about the way you described earlier about like your wife in a dark room in the fetal position for two weeks over and over again. You know, and you think about the phrases like that, that you just, you say really casually, right? Because it’s just like sort of part of your thing, whereas other people would be like, what, this thing happened, right?
Allison: But it’s just part of your life. You know, somebody, my sister-in-law actually said that to us this week, that she’s like, I can’t believe the skin procedure that Sean has. It’s just something that’s on your calendar all the time. She’s like, I had one of those once, and I still feel traumatized. You know? I remember when we were, I was booking a venue for Sean’s 40th birthday, and I was talking to the owner of the brewery and said something like, you know, his 40th birthday is a really big deal because he’s like already way outlived the median age of death for his disease.
Allison: And I was just, the phrase that I say, and the owner was like, what, you just said that really casually, right? So, you know, you think about, that that’s the kind of stuff you were holding on to, like, right? You were like in an office, knowing that your wife was in the fetal position in the dark in your house, and you didn’t know what you were gonna come home to and all of that stuff.
Allison: And then I can just picture like your coworkers being like, oh man, are you gonna watch the game tonight? Or what a bummer, like they’re out of pepperoni. I don’t know, whatever, right? Now, granted, maybe they have hidden stuff too that they’re not talking about, right? But most people, which is why we have this podcast, most people our age are not dealing with this stuff. And they do get to just go through their work day and think about what fun thing they’re gonna go do after work. And we have a whole extra thing that we’re holding on to, that we’re thinking about throughout the day, and then also knowing we’re gonna go home to, you know?
Justin: Yeah, when things were really bad like that, I would, before I left for work, we lived in a two-story like townhouse. And so Sarah wasn’t, you know, stairs were hard. She couldn’t, so she was, you know, for a long time, mainly she would just be upstairs. And so I would have to put together like a breakfast or, you know, some lunch food and bring that up to the room for her when she got up, like to have her all set up for the day, you know, before I left for work. Yeah. And that was just a thing I did.
Allison: Right.
Justin: Yeah, and I mean, another part that was hard for a long time is she, for a long time, like just getting sleep, getting deep sleep was just not happening for her. And she, whether it was insomnia or restless legs and just feeling just restless and in pain, the person next to her at night, that made sleep hard. And so there were times for a while, you know, I ended up, you know, sleeping in another bedroom just because I needed to sleep so that I could function during the day.
Justin: And I’ve been able to sort of decondition myself enough that now I can be sleeping, and she’s got stuff spread out all over the bed, and she’s doing whatever, and I’m just sleeping all night. Which has been great, but yeah, there’s just a lot of, when you’re going to work every day and needing to kind of perform for 40 hours a week there, and you have all of this stuff going on at home, it’s, yeah, it’s hard. There’s a lot of those kind of things you have to kind of do just to make both of those things work.
Allison: Yeah, yeah, I think about that. That hits me when you talk about, like, so the stamina that you need to go to work, right? And I think about that, like, both when our daughter was little and, like, if she’d be up in the middle of the night, or now, like, with Sean, right?
Allison: Like, you’re up in the middle of the night, and you’re dealing with this thing, and you’re thinking, like, oh, my gosh, in however many hours, I need to be, like, awake and perky and ready and coherent and all these things. And so you can never sort of turn the other thing off because one’s going to affect the other, even if you’re technically off the clock in that moment, you know? Yeah.
Allison: I mean, it makes me think about it. So you said that, like, so before you would go to work, you would do all these preparations. And then I’m thinking about, like, during the workday, all the juggling that, you know, you and I both do, and then also you come home at the end and you don’t know what’s kind of waiting for you and what your evening’s going to be like, right?
Allison: And so even now, even though I do get to work from home, you know, I’m here in my home office and I’m thinking, like, I’m in the middle of a different meeting and my phone alerts me that, like, oh, his lab results are in. So I’m, like, checking lab results, you know? And I see, like, oh, the clinic’s calling, and then I have to decide, like, okay, is this a Zoom call that I can be like, hey, I just need three minutes, or is it not?
Allison: You know, and how many times can I do that kind of thing before they’re like, who is this person, and, like, why can she not, you know? So it’s a constant, just, like, juggling, whether you’re in the house or not, of those pieces, and I don’t feel like I’m ever able to be, like, fully present, you know, with him, with her, or with him, with our daughter, with work. You know, you and I, I think I have talked about that, too, always just sort of feeling, like, guilty or, like, pulled to the other place, you know?
Justin: Yeah, and so after a number of years, we got to a place where we needed some additional help to make all of this work, and so I would, I worked it out with my job, where I would be home, I would work from home three afternoons a week, and then the other two days, Sarah’s mom would come over and be there for Sarah during the day.
Allison: Yeah.
Justin: And we did that for a long time, and then also as part of that, some of Sarah’s appointments, my mom would take her to, and so that kind of unloaded a little bit of that, needing to take some time off work, and so that, both of those helped a great deal, just to kind of unload some of that stuff for me, but to get to that point to ask for the help, that was, that’s hard. And now we’re in a place where we’re living with her parents, and so there’s always somebody here, and it’s made a huge difference for both of us, that it’s obviously not an ideal situation to be bedridden in a lot of pain, and just being alone all day with your husband’s at work, but we had to do what we had to do to survive.
Allison: Absolutely.
Justin: And thankfully now, when I was going to the office, Sarah had someone here, and for her, she described the change as life going from black and white to color. And it just made a huge difference for her.
Allison: Oh. Wow.
Justin: Yeah, so that’s, we couldn’t be happier with our current situation.
Allison: Yeah. Oh, I’m so glad for you. And I think it’s not like you were leaving her to go to the casino, or you know what I mean?
Allison: Like, you know, like we talked about, I think this is another piece of caregiving, is for both of us, like our spouses are not able to work, even though they are very much within the age range of people, right? Of like, of people who are, quote, expected to work. And so that is another thing that falls on us, right?
Allison: Is that we are the breadwinners and the insurance holders. And so again, it’s not that you were going off to like joyride around town. It’s that you were going off to like bring home a salary and provide insurance, you know?
Allison: And I think that’s another piece too. I have a friend who around our age and same situation taking care of her husband, and she just lives in like constant fear that like, again, what if she loses her job? If she loses her job and they lose insurance, then what?
Allison: And I think that that like, I think a lot of people have to make their career decisions differently because of that. I know that for me, that there are a lot of travel opportunities that I could have had in my work that I have not taken because it’s just too complicated. And again, fortunately, people are fine with that, but there’s a lot of different things I could have been doing.
Allison: And even thinking about my writing, in a different scenario, maybe I would say, I’m gonna risk it and go out in the world and try to be a writer. But instead, it’s like, I really need stability. And then so we need to have, to make sure that we have a salary and that we have insurance and we have those things so that he can be taken care of, you know?
Justin: Yeah, that’s, I guess, having the job, being able to have the insurance and the salary to continue caring, like that’s also caregiving.
Allison: Absolutely, yeah. Good point. Good point. And I think too, I mean, I was even lucky that even this is a new job, it’s with an organization I’ve been with for 10 years. Because again, I’ve built up those relationships so I could say, guess what, from day one, here’s the deal, here’s my husband, here’s what I need. And I just think about caregivers who are starting fresh.
Allison: You know, like again, for you too, like you had already been there, I think you said seven years when she was diagnosed, and so you had some clout. And so I think that’s a difference too, is like for both of us, it sounds like we had sort of built up a positive reputation in the organizations, so that we were able to say, yep, I’ll get it done. I’ll get it done.
Allison: And people could believe us, but I think about caregivers who are brand new to a job, and then they don’t have that reputation yet. And how can employers believe that or say, like, you know, why would I take you on when I can take on someone who might not have to be gone a lot? But it also just makes me think right now about, like, this is a really hard time in the world for a lot of people. And I think parents right now, working parents, are losing their minds.
Justin: Yeah, I can imagine.
Allison: You know, like having to work at home and have little ones at home and teaching all the things, right? And so I hope that in this moment, this is a time that employers can see ways to be flexible for their parent caregivers and that that could hopefully bleed over into caregivers like us. Because everybody’s being torn in a million directions, you know, in their workday at this point.
Allison: It was also making me think about when we say that, you know, oh, just get your work done, right? It’s great that there’s that flexibility. And then you think about how many full-time jobs essentially do we have,
Justin: Right.
Allison: And so just getting it done is a great flexibility to be able to have. And for me, I don’t know about for you, but that means often like working on a weekend, working at night, doing these things because I essentially have this other full-time job of caregiving. And so it’s not like somebody who says, well, I’m going to take the afternoon off to go to the beach or whatever, and then I’ll get my work done later. It’s like, I’m going to take the afternoon off to go to the hospital, and then after that, I’m going to spend four extra hours working, you know?
Justin: Yeah, for me, I very rarely, I think, have I been in a position where I had to carry work over into the evening or the weekend. And I’m not looking back, I don’t exactly know how I manage that with needing to take time off for Sarah. But thankfully, that hasn’t been the case, because, yeah, once you get home, you’re in another full-time role or multiple. And so, yeah, if you’ve got to do work late, then something else is going to have to slip.
Allison: Exactly. I think that we, I mean, I know that you and I are like superheroes, basically. And so I think…
Justin: I wasn’t going to say it.
Allison: I know. You’re always the humble one over there. And I’m always the one that’s like, dude, we’re awesome. We do all the things. But I think that that’s part of it, is like, I’ve just had to learn to be ridiculously efficient. You know, like, I can get my stuff done so efficiently because I’ve just had to learn how to do that. I’ve had to learn how to do something in between appointments or do something late at night or in the hospital bedside. I’ve just had to learn how to do that. And so I think that this has sort of forced that skill on me. You know?
Allison: And sometimes at the end of the work week, if I look at my time sheet, I’m like, it feels like I just work like 90 hours, but it’s not. And then I’m like, oh, that’s because if I put a Sean time sheet on my calendar, and I put a Maya time sheet on my calendar, then it would be like 120 hours or whatever. Yeah, so many things that we balance.
Justin: Yeah. So you mentioned earlier someone who might be new to their job and not be established with their employer to where it might be more difficult to ask for whatever accommodations that they need. Do you have any advice that you would give that person as far as how to advocate for yourself?
Allison: Yeah, that’s a good question. Because I mean, I did just do it, and again, I had the relationship, so it’s a little bit different. I think if it was, I would say that to seize this current moment that we’re in, because everything’s being reimagined.
Allison: And so I think I would just take advantage of this moment to say, you know, we’re in a time of flexibility. This is what I need. I think that that’s what I would hope that people would feel like they can say, is I feel like too often we just say, well, what’s the employer willing to give me? And I think that as employees to say, here’s what I need. And to sort of fight for that flexibility instead of just shoving ourselves into the box that already exists.
Justin: Yeah.
Allison: Because I think that employers are probably willing to see that if they know that that’s a need. I think if I was brand new to an organization too, I would potentially try to, if I had some, be able to show like, look, I did this in a previous position, or I have some history, or I want to show you that I’m able to get this done and be flexible. I would try to do that.
Allison: I think also I would even say like, I want to try this flexible thing. Can we try it for three months and then check in and see how that’s feeling kind of thing? I know it’s tricky because, you know, the economy is tough right now, so people might not be willing. But I think that the more that you would feel brave and bold to, and transparent in the beginning, to say, I’m an amazing worker, I’m going to bring this thing to your organization, and some things that I need are this, and I’m still going to get your job done. I’m going to get it done really well.
Allison: Now, that sounds, I probably made that sound too easy, and I’m sure it’s more complicated than that. But I think those are some places to start. And I know that’s what, like, I know Ionicare is trying really hard to help employers, because I think a lot of employers think, like, I don’t have caregivers who work here.
Justin: Yeah.
Allison: And it’s because caregivers aren’t talking about it. Right. So how can organizations themselves start to look for that and realize that, like, yep, you do? You know, whether it’s for their spouse or their parents, or at this moment, their kids, like, how can we meet the needs of the employees to keep everybody happy, you know?
Justin: Yeah, I know for myself, I mean, having worked for years, it wouldn’t be uncommon for someone to, you know, hey, I need to take my kids sick, I got to take the day off, something like that. But somehow, like, making that jump to feel like it was okay for me to use, like, my sick time to, like, go to an appointment for my wife, like…
Allison: Yeah, yeah.
Justin: That’s what that time’s for as well.
Allison: Right.
Justin: And if some, you know, if it can feel normal for someone to take time off because their kid’s sick, like…
Allison: Yep.
Justin: Absolutely, it should be not an odd thing for me to be doing this. And I would hope that employers would see that the same way.
Allison: Yeah, yeah.
Justin: So, yeah, there was that I had to make that sort of mental shift and then kind of crossing that bridge, things got easier because it was like, yeah, this is what this time is for. It’s there for me to use. And, you know, I haven’t been using it for years and years. And so there’s hundreds of hours there. And so, you know, yeah, it’s available.
Allison: Yeah, I wonder how much of it is in our own mind. Right? So if we would say to an HR person, hey, can I use this to help my spouse? They’d probably be like, absolutely. But because there aren’t a lot of people like us or a lot of people like us who talk about it, I just wonder like how much of it is just like in our own head. And we’re like, yeah, I can’t use that.
Allison: I can’t use it for that because most people, what I see is that people are using it for their kids. When actually, like, according to the organization, maybe it would be totally fine. I think that even when I started two weeks ago, I had this like vision that like, okay, when the clock strikes eight, I need to be sitting at my computer. And I need to sit here and I need to not move until four o’clock because now I am an employee and not a contractor. And that was really in my head. You know, like my employer was able to say, nope, nope.
Allison: Like, you don’t, that’s not how this is going to go. But I think, so I think some of, but I again had a relationship with her, so I was able to say to her, I’m feeling really stressed about the fact that I have to sit here from eight to four. And because I was able to say that, she was able to say, nobody said you have to sit there from eight to four at your computer, in your house. You know? And so I think how much of it is that can we ask those questions to and advocate for ourselves because some of it might just be in our head. And HR is, I think, meant to sort of like help meet our needs, you know, hopefully.
Justin: Yeah, exactly. Yeah, and I think that goes back to, I mean, for me, not wanting to rock the boat and appear to be a, you know, an employee that they want to keep around, not do anything to like, well, he’s gone all the time kind of thing.
Allison: Right.
Justin: But it’s also, again, well, it’s one of those things where it’s kind of like our needs kind of end up at the bottom in our lives. And that’s not necessarily because we’re devaluing ourselves or something like that. It’s just kind of, that’s unfortunately the situation that we’re in.
Allison: Yep. Yep.
Justin: But yeah, that’s kind of points back to we’re wanting to make sure that everything else is taken care of before before ourselves.
Allison: Right. Because that makes me think like, okay, if we use our sick days to take care of our spouse, then we use our extra hours to get our work done. Then what about us?
Justin: So what did you do for Sean’s appointment? You mentioned that you didn’t have any paid time off.
Allison: Yeah, I did end up going. And then when I came home that afternoon, I just like worked all afternoon and evening. And I think, you know, that’s something I’m just going to have to figure out, because I also just worry that even though technically like I think I could have taken like a floating holiday.
Justin: Right.
Allison: I mean, you know, most years he’s in the hospital a lot and there’s a lot of appointments. I mean, he was like, you could burn through a whole week of PTO just for skin cancer surgeries, you know, in a year. And so there’s sort of that extra weight of like, well, can I use it now? Because what if I need it later?
Justin: Yeah.
Allison: And even for myself, like one morning I woke up not feeling well, and then I sort of panicked like, wait a minute, I can’t take sick time for myself. I’m going to need it for him.
Justin: Right. Exactly.
Allison: You know, and that’s just like not a good feeling. Because like you said, then if we put ourselves last, then we’re going to just like power on through.
Justin: Historically, that doesn’t end well.
Allison: It does not. Nope. And I think none of it ends well, right? Like I think if we’re not asking for what we need and we’re not getting that, that’s not going to end well. Right. And so how can we? I don’t know. Advocate for what we need, try to find that balance, and then continue to advocate, because I think it’s going to keep changing. But I know I’ve said this a couple of times, but I really feel like this is a moment to try to help employers reimagine.
Allison: And so I want caregivers to sort of and parents to sort of grab on to this moment and say like, hey, see what’s happening to like all the people? You know?
Justin: Yeah.
Allison: And it goes back to what you said about creativity, like things that before they would have said like, oh, no, that can’t work. There’s no way that could work. Now they’re like, OK, sure. Zoom. Everybody will do Zoom. Sure. Everybody’s at home. OK. You know, we just have to. And so, yeah. And we do a lot.
Justin: We do. Yeah.
Allison: And I think it’s also kind of funny that neither of us are in any way close to the medical field. Right. And so we have these jobs and these skill sets that are like totally removed from the caregiving stuff that we do all the other hours of the day. Right?
Justin: Yeah.
Allison: So it’s sort of like we have two areas of expertise, at least.
Justin: Right.
Allison: And two full time jobs. One just maybe pays better than the other.
Justin: That is true. But the other one, we get to spend the time, spend our time with our spouses.
Allison: You know, you are always little Mr. Sunshine over there. I appreciate it.
Justin: Well, I think you’re the only person that says that.
Allison: Maybe it’s because I spend like one hour with you every other week. Maybe that’s why. But you’re right. I mean, that is like the gift, right, is that, you know, we get to do this. And I think, you know, it always bugs me when people just say like, oh, it’s just such a gift and a blessing, and that’s all. But it is, and it’s really hard.
Allison: And like we get to be, you know, and that’s a gift. I feel like that I get to be at home. It’s like in between meetings, I get to run out there, and there he is in the living room, you know, and that’s amazing that I do get to spend way more time with him than I would if I was in an office or, you know, whatever.
Allison: So, all right. Well, here’s to another week of working in all the ways, in the office, out of the office. I mean, at the actual job and at the all the other jobs that we do. And caregivers out there listening, you know, you’ve got us, you know, we got your back. If you want to ever talk about how to advocate, how to ask for what you need, what that might look like, if you want to know more about what my process was as I negotiated this new position. And then also we can put on the on our page, but we did just to IANAcare just did a webinar for employees about this topic. And then in the fall, they’re going to do one for employers. And so we can post some of those links to if anybody is interested. Yeah, we can post those too.
Justin: Yeah, that sounds great.
Allison: Good.
Justin: Yeah, this is this has been a good talk.
Allison: Yes. Yeah. Thank you. It’s timely. Since it’s what I’m in right now, so thanks for talking through it with me.
Justin: Yeah, happy to do it.
Allison: All right. You have a good week. I’ll talk to you later.
Justin: You too.
You’ve been listening to In Sickness. Find us online at InSickness.care or on Instagram at InSicknessPodcast.
You can send your questions and comments to InSicknessPodcast@ gmail.com. If you enjoyed this show, please share it with a friend or fellow caregiver, or leave us a review on Apple Podcasts. Thanks for listening, and take care.