#1373 Caregiver Burnout Series: Part 4
Erika Forsyth provides strategies and encouragement for caregivers making career sacrifices to optimize T1D care.
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Scott Benner 0:00
We are all together again, friends for this next episode of The Juicebox Podcast.
I'm back with Erica today in our fourth installment of the caregiver burnout series, today, we're going to be talking about making career sacrifices and choices to optimize care. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you'd like to work with Erica, you can find her at Erica forsyth.com, when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juicebox. To save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if you're newly diagnosed, check out the bold beginnings series. Find it at Juicebox podcast.com up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for Juicebox podcast, bold beginnings.
The episode you're listening to is sponsored by us Med, us, med.com/juice, box, or call 888-721-1515, 888-721-1514, you can get your diabetes testing supplies the same way we do from us med. This show is sponsored today by the glucagon that my daughter carries. G voke hypo pen. Find out more at gvoke, glucagon com forward slash, Juicebox Erica. This is the fourth episode in your caregiver burnout series. What an upbeat title that is yes, but very well put. And you know, I think needs to be talked about. What are we going to talk about today?
Erika Forsyth, MFT, LMFT 2:13
Yes. So this is the fourth burden or theme that you know again, that came up from all of the research conducted over caregiver burden of parents to children with type one. And so this fourth theme, and we're discussing it through the burden or barrier to taking care of yourself or making choices you know for yourself is making career sacrifices and choices to optimize T 1d, care. Okay,
Scott Benner 2:41
do you think during this one, will we talk at all about the idea of people homeschooling when their kids are diagnosed? Because I see that come up a lot. Does that fit in this one?
Erika Forsyth, MFT, LMFT 2:50
Yes, yes. Okay, good, absolutely. So like, like our other episodes, we have a quote that's taken from the research of a parent who is validating this theme. So do you want to read the quote? Oh, yeah,
Scott Benner 3:02
it's my turn. Now I rarely focus my energy on the company I work for. I just get off work as soon as I as possible. I used to leave early and return late to make money. Now I quit my job and found a new one that I can make a living while taking care of my child.
Erika Forsyth, MFT, LMFT 3:18
Okay, okay, you could read this quote and think, Wow, is this parent becoming more balanced or, you know, we don't know, but oftentimes, from the research and from your stories, you know, we hear that because of this constant need to to monitor, to manage, the T, 1d that caregivers Do report experiencing some form of impact on their careers post diagnosis. So we're going to talk a little bit about
Scott Benner 3:45
this. Yeah, this happened to me. So, yeah, yeah.
Erika Forsyth, MFT, LMFT 3:48
So did you make the choice to stay at home? Well,
Scott Benner 3:52
I mean, we made two different choices, the first one, and I just recently shared this with Arden, and I realized, as I was telling her, I don't think she knew this, but I think we were going to have three kids before Arden got diabetes. That was kind of like in our plan. And diabetes definitely kicked our ass, and it stopped us from having a third child. But I was a stay at home dad. I began being a stay at home dad in 2000 Wow, that really dates me, and the plan was to raise the kids, get them into kindergarten and then go back to work. So Cole was going to kindergarten as Arden was born about like, we kind of did that on purpose. We that was kind of the one thing we did on purpose that Cole would be around for like, a year while Arden was, you know, a baby, and then he'd go to school when she started toddling was kind of the idea. Then, when we realized that we probably weren't going to have another baby, and Arden got older and older, I was supposed to go back to work, and then we couldn't figure out how to accomplish that, like, because we were really bad at diabetes. Like, not good at it at all. And keeping in mind that diabetes back then meant. Like, we had a vial of insulin needles and, like, a little meter, that was it, right? But we didn't have a lot of direction from doctors and things like that. I guess I should say, we kept saying I should go back to work, and we needed me to, like, you know, but then we couldn't figure out how to do that. And then before long, it turned into, well, Arden's going to school, but she'll be home at 12. And then it was, Arden's going to school, but she'll be home at three. And like, who's going to be here and who's going to take care of the diabetes? And before you knew it, I looked up and I hadn't had a job in 20 years, you know what I mean. And that was not, not nearly part of the plan. And I will say, had I not done all this, I think it would have been detrimental to me, because I don't know where I am. Now, you know what I mean, like, I can't get a real job, Eric, I'm a podcaster, like, like, but, you know, aside from that, like, I don't know what I would do. Like, I was a real part of the workforce at one point. You know, it felt like I gave the idea of something or the possibility of something away, to stick around and pay attention to diabetes. So I'm sure a lot of people end
Erika Forsyth, MFT, LMFT 6:05
up doing and did that feel like a sacrifice at the time? Yeah? Or did yeah? No,
Scott Benner 6:11
no, it definitely did. Because, like, I love being a stay at home parent. I was really I think I was good at it, and I got a lot of enrichment out of it for me personally, like I've talked before about the idea that, like, you know, when Cole was a year or two old, I realized that, like, there were these, like things that came up that my wife seemed to kind of just intrinsically know the answer to, or and I would struggle with them. And I thought, like, if I don't give myself over to this process, like, he's going to end up having a half of an experience, and she's going to have this experience taken from her, because she's not getting to do it, and he's not getting what he would have gotten from her. So I thought, I have to throw myself into this. And it's when I, very early on, stopped looking at raising Cole as a task and more of a calling, like I tried to do it like that, you know. So I loved it. But at the same time, your friends are making money you really haven't lived till you've bought your wife a Christmas present with her money that she ends up not liking, you know, like so you start having that feeling like, I'd like to contribute. I'd like to make my own way. I want to feel more valuable that way as well. So yeah, it felt like I gave some things away. And I have had reflective moments in my life where, I mean, I joked about it a second ago, but I'm like, I don't know where I fit in society if I try to jump back into it. And I probably don't like I probably on paper, I don't think I'm hireable. You know what? I mean? Like, I, the last time I held a job, it was, was 1999
Erika Forsyth, MFT, LMFT 7:46
you know? Yes, well, we're grateful you're here. You're doing a great job for us here. Well, lovely, but
Scott Benner 7:53
I'm barely a greeter at Walmart on paper, is what I'm saying. So, like, you know? And I, I just didn't want a job that, like, a retiree got, like, as a I didn't want to be like, 45 years old and going back into the world and not being able to, like, even get back to the level where I was right, right. But anyway, I tried very hard to let that go. If you take insulin or so faucinyas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with jivo kypo pen. My daughter carries GEVO hypopin everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly, and they demand quick action. Luckily, jivo kypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store jivo kypo pen and how to use it. They need to know how to use jivo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulinoma, visit gvoke. Glucagon.com/risk, for safety information
Erika Forsyth, MFT, LMFT 9:23
that is a big I mean, you are living and breathing what? Again, this research has reflected in the research, again that's been gathered from 1995 to 2021 for many parents that this burden of care results in, as you just said, the decision to adjust their work hours or leave jobs or careers entirely. These are things. These are themes that I talk about with clients, and I've heard people share right on the podcast, maybe you decide not to pursue a higher career ambitions like going back to get your higher level degrees grad school, you know. P. PhDs because of the work demands of taking care of your child, you might have avoided or avoid desired job opportunities. Maybe you get there's an opportunity for a raise or a promotion that may involve more travel, and you you can't take it because of the need to take care of your child. A lot of people stay at certain jobs because of health insurance, right? Like we are really driven by that need. And if you at a job that maybe you're not as satisfied with, but they have great health care benefits, you maybe make that sacrifice, right, to stay there.
Scott Benner 10:39
That's gotta happen so much with diabetes, right? Like it has to where people, you know, like the difference between something covering 60% and something covering 80% on items that are this expensive is, you know, it's impactful. You know, yes,
Erika Forsyth, MFT, LMFT 10:55
yes. And then, and then, even if you do decide to change jobs and go and you go through the whole rigmarole of changing insurances, insurance plans, and that is really complicated and challenging, right? Like you have to go through maybe prior authorization, etc, etc, you guys know, all the drills that experience, in and of itself might keep you at a job, even to say, I just, I can't go through this another insurance change for some of you may not have a nurse at school, so perhaps you have one of one of the if this is in a two parent household, whether or not you decide that one parent can no longer work or has to only have you know remote jobs, because who's going to run down to The School to change the pod or the device if there's no nurse, if you're at a private school or in public schools, you only have the nurse on Tuesdays. And for some of you might even decide, as are you saying to home school? Yeah,
Scott Benner 11:52
I hear a lot of people talk about just the fear of letting someone else make a medical decision one way or the other. There's people who don't trust the school nurse. Let it. They don't trust anybody like, you know, and I understand that, like, and I had this conversation recently with a person where they were saying, like, I don't, there's no one at my kid's school that I feel comfortable making, like, a dosing decision. And, you know, they can call me, that's great, but you still don't know what they're drawing up. You still don't know what they're twisting up with the pen or whatever's going on, dialing up on the pump, and I still don't feel comfortable. You know what I mean, like, so if the mom or the dad's like, I don't really feel like I know what I'm doing, I'm supposed to be telling them what they're like. You know what I mean? Like, I mean, how am I gonna give this at least when I'm there, it feels like I did it. It's me. I double checked it, you know, I don't know. It's just there's a lot of fear in there, and I lived through absolutely all that. I don't know how often I talk about it, but I thought it was important for Arden to go to preschool, so I took her to a half day preschool a couple of times a week. But you'd think, like, oh, there's your downtime. I just went out in the parking lot and sat in my car like, I was like, Oh, well, you go have this preschool experience, and I'll sit out here in case something goes wrong. And I don't think I went in maybe, like once in six months, but, you know, leaving was too far and, you know, it just felt ridiculous. Now, everybody can watch TV on their phones, but, man, I didn't have that, you know what? I mean, would have been awesome, but it just instead, I just sat there. I'll sit here for a few hours while she just in case. Yeah, and those are hours of my life that are like she's off being enriched, and I'm staring at the dashboard, you know? And then you've got to be able to do that without, without it feeling like a burden, or without it making you angry, or, you know, it's a word I'm looking for. I can't think of it resentful, yes, yeah, and
Erika Forsyth, MFT, LMFT 13:43
yes, so, and for some parents, this is, you know, it's just $1 and cents type of decision, right? Like, you have to stay at the certain job, but you need to keep it remote, or we can afford to only have one income coming in, so that, you know, but there's, there's emotion involved. And so when we talk about the tool, this is a really complicated one, because it might just be a dollars and cents issue, right? So that the tool with this is, is to notice the why, which we've been talking about, which, again, can be a challenge when you're burdened and in working full time or in trying to manage your child's type one, but underneath that, it's okay to like you just said. You don't want to be resentful. But let's say you've been in a career, and all of a sudden you get the job opportunity of a lifetime that you've been working towards, and you feel like you need to turn that down in order to be around for your child and to manage like there's grief there. Do
Scott Benner 14:46
you know how I became a stay at home dad? No daycare cost $100 more than I made a month. Oh, yes, okay, that's simple, like we went to the first of all, nobody. I mean, I don't want to say nobody. What? Did not want to. I'm going to make somebody upset, but I'm just going to tell you how I felt you can do whatever you want with it. I felt like we had a baby to put it in a kennel. That's what daycare felt like to me. I was like, what do we make it for if we're just going to go stick it in that building? Now, I had that feeling to begin with, but fair enough, that's what we were going to do. And then you shop around. Found a decent one where you felt like, oh, the kid might live through this, you know. Okay, it's close to your house. And then here's the bill with the month. And I remember going back to Kelly and saying, like, I make less than this cost. I'm like, I'm not on some fast track to be the CEO here. You know what I mean, like. So I said, Well, why don't I just stay home? Well, actually, the first thing I said to her is, why don't you stay home with him? And then she laughed at me for a while because she had, she had what they called opportunities, and I was maybe more working a job, you know, she actually very kindly said, like, I think you'd be great at this. Why don't you stay with him? And then I did. And then you realize, like, wow, like, we need the money, but it was going to be gone one way or the other. You know, like, it sucks to have to be put in that position, but diabetes puts you in that position, like, every day, to some degree or another, where you're just, like, it's always, like, you said $1 and cents, you know, decision you're making. So it's the whole, I mean, it just you're not ready for it. And by the way, just because it was a good financial decision doesn't mean you just wake up with, like, rainbows and unicorns flying through your head the next day. You're like, I just stopped working up until that moment, spent my entire life trying to get to the job I had. And I had some really terrible jobs, Erica, like, I worked my way through terrible jobs to get the, I don't know, the cleaner, at least I was indoors, you know? Like, and I was like, and I was like, okay, like, I've, I've worked my way up to this spot. If I leave, like, I fall back down to where I was. I hadn't ingrained myself in that place yet in the world, you know what I mean? Like, I couldn't just go trading off that again. Five years later, the world would have left me behind at that point. And then that all is in your head while you're doing this. So anyway, Jesus, this sucks. No wonder it's easy,
Erika Forsyth, MFT, LMFT 17:06
well and yes, and I think as a parent, like it feels air quote, easy to make sacrifices for our children, right? Like we would say, Well, of course we would want to do what's best for our child, and perhaps saying no to that job opportunity, or saying no to a traveling job versus a remote job or an office job. Rather, that might feel easy in the moment, but there is more loss potentially there to your identity, to your social community network, to the way you feel like you're contributing to society and feeling those things doesn't mean that you're a bad parent or that you there is that resentment, maybe, is there sadness and grief around that it's a loss, right? So you're grieving the loss, you're grieving the diagnosis and the diabetes, and then there could be this kind of compound grief and loss around work, if you feel like you need to be making these decisions and sacrifices. Diabetes
Scott Benner 18:03
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Erika Forsyth, MFT, LMFT 20:07
that for the most part. I would say that's absolutely true for most families. It is rare that one and again, in a two parent household, if one parent can say, You know what, we're okay, I can, I can leave my career and and be the primary caregiver to our child with type one, but you are, I think you're also, conversely, let's say you can't, you don't have that luxury to make those kinds of decisions. And you do have to schlep into the office every day. And both of you do, yeah, and then you're trying to manage, and then you're trying to figure out, oh my gosh, we have to go in and help change the device. There's no nurse, you know that's there's so much you're
Scott Benner 20:43
lucky if you're in an office, because you could be at the bottom of a ditch, you know what I mean, or up a tree, or any number of horrible jobs that I had when I was growing up. Listen, I'll be clear about this. I was making $1,600 a month. Okay? I worked really hard to get to $1,600 a month, like, prior to, like, I don't know how many, how often people listen to this podcast, but like, coming out of high school, I didn't have any opportunities at all. I keep thinking of, oh, Brother, Where Art Thou? Why am I thinking of that movie? Because he uses some phrase about opportunity anyway. That's way off track. But, like, I came out of there, I'll figure that out later. Okay,
Erika Forsyth, MFT, LMFT 21:18
I haven't seen that in years. It's a good move. You should say it. I
Scott Benner 21:20
came out I came out. I was working at my uncle's sheet metal shop. I was making $5 an hour, five like, I worked a whole day of my life to make $40 and then the government took eight of it. I don't know why they felt like they needed my eight bucks, but they took it. I was going home with, like, 210, or 3060, 90, 120, 100, like, I mean, I maybe had, you know, God, it's so sad. I maybe had six, 700 bucks at the end of the month. Like, I worked a whole month for that money, right? So without college to get myself up to 1600 I was like, that was hard, and it took years, like, literal years, and then that money comes off the books. I guess this is where I should point out. I don't we didn't exactly make coal on purpose. He knows this, so it's not a big deal. We were still in the, you know, trying to get their phase, and then all of a sudden, we lost 17 or $1,600 a month. We were gonna lose 17 if we went to daycare. We lost $1,600 a month in income. And then there were costs. Do you remember the first time you bought diapers and you were like, Wait, how much are these? Yes, you know. And then forget diapers, insulin pumps, CGM, doctor's visits, blood tests over patches. Like, you know, I don't know everything all the like, think of that drawer in your house. What's in there? You know what I mean? Oh, geez. Again, Erica, yeah, all you do is bum me out. Go ahead.
Erika Forsyth, MFT, LMFT 22:46
So what we're again? Yes, I hear that, and we're wanting the hope is right to to validate your experience, that this is something that is, you know, in the research that you guys are experiencing, and it's hard, but in this space of, you know, in this burden, it's okay to to validate the grief and loss around whatever that may be, whether it's feeling like you you have to stay in the workforce or you have to leave it wherever that rub is right, the tension, it's okay to to grieve that it doesn't make you a bad parent. So
Scott Benner 23:21
that's where the tools lie for this to get yourself around that are is, I mean, you have it put here so nicely, I don't I feel like if I'm going to say it, I'm going to mess it up. Go over them again for me.
Erika Forsyth, MFT, LMFT 23:31
Okay, so, so in the in noticing the why, you know, wanting to encourage you to think about the burden that you're experiencing in in the career, in the insurance space, if you are feeling angry, resentful around some of these sacrifices, that that feels that that's normal, and there might be grief in that right in that space, you know, it's, it is. It's connected to the diabetes, but it's also separate, because you're feeling like you have to choose and to lose something that may be really important to you, and then, and secondly, to notice your thoughts and feelings around the decision when you do make it, if it's not just a dollars and cents decision, are you leaving a job because you feel like, is there shame driving that right? Like, Oh, I'm going to be a terrible parent if I choose to stay in the workforce, because I really find belonging and identity and satisfaction, and I'm really good at this thing that I do, but if I stay, am I going to feel, am I going to shame myself that I'm not a good enough caregiver to my child? So I probably should just quit and do this right? Like this is beyond all of the dollars and cents things that we're talking about,
Scott Benner 24:43
right? Well, the resent me too. I mean, listen, you can't have resentment because it's such a horrible thing, because it's you could feel resentful, but if you model the resentment, then you resent the diabetes and the choice it made you make, and the kid's going to have a. Time separating themselves from the diabetes, so it's going to feel like you resent them. And they could, yeah. I mean, it could. It might not, but it could, yes. And I think we all know somebody who, you know, had something happen in their life out of step with a plan, and it revolves around the arrival of a child. And you know, if you've been alive long enough, you get to look up in 20 years and see that that does not make for a great relationship so, and then it hurts people on both sides of that problem, to the kid and the and the parent. So I don't know. I mean, it's a lot of pressure here, but it very important, like it's a very important thing to notice, use your tools, get through it and hopefully just move on, because it in the end. Like, I hate to say this, but, like, it usually works out okay. Like, you know what I mean? Like, you know, everybody's financial situation is different, obviously, but, but people usually find a way to, like, exist that they're at the level that they're earning at. Like, hopefully, you know, yeah, I know sometimes you're just at a level where you can't get ahead no matter what you do. But I don't know. It's hard to talk about money. It
Erika Forsyth, MFT, LMFT 26:07
is, it is this, and this is a hard burden to discuss, because there are no really easy tools to be like, well, just, just go find a good job that you can stay at home and do all the things, right? So just the I think it's important to validate, because this is a significant part of the caregiver burden that isn't always emphasized, but is there something that part of the mental load, part of the things that you're carrying as a caregiver? And so I think it's important for us to highlight and validate and to encourage you to if you are able to have the luxury of time and space to think about your feelings around it and honor and offer the self compassion and
Scott Benner 26:45
no shame if you have to sell pictures of your feet online, I wish I had prettier feet. I would do it.
Unknown Speaker 26:51
I mean, you gotta
Scott Benner 26:53
do what you gotta do. I don't, you know. I mean, listen, there are other ways to get by, you know. And I think the important thing too is it doesn't need to be forever. It feels like it and but if I try to look back on my life, like, is there a moment where I could have just said, Okay, fine, she'll be okay if she comes home and I'm not here, yeah, and the answer is yes, but at that point, I was doing this, so I didn't have to go looking outside of the home, but I could have, like, at some point, like she knew what she was doing. We had a routine. There were, you know, like we had safety measures set up in different places. I could have gone to work. It wouldn't have been terrible. Would I have had to have left sometimes, maybe to help with something at school once or twice, probably. But also, there's an argument to be made that they would have just found a different way to do it if I couldn't be there, you know. So I don't know, make your
Erika Forsyth, MFT, LMFT 27:45
choices. Yeah, and things are seasonal. That's important point. Ooh, that was
Scott Benner 27:50
lovely. The way you said that, yes, things are seasonal. Is that a thing you say to people? Things are seasonal?
Erika Forsyth, MFT, LMFT 27:56
I don't know. Maybe I should, though, yeah, I
Scott Benner 27:58
would definitely say that if I was you also, I think if your second toe is longer than your big toe, then you're not good for pictures. I think that's the is that what the research says? I know, if we're calling it research or not, Erica, but that's what I've heard, okay, from the kids. I appreciate you doing this with me. Thank
Unknown Speaker 28:16
you. You're welcome. You
Scott Benner 28:25
a huge thanks to us med for sponsoring this episode of The Juicebox podcast. Don't forget us med.com/juice, box. This is where we get our diabetes supplies from. You can as well use the link or call 888-721-1514, use the link or call the number. Get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, a huge thank you to one of today's sponsors, gevok, glucagon. Find out more about G vo hypo pen at G VOQ, glucagon.com, forward slash, Juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for, and set up those downloads so you never miss an episode, especially in Apple podcasts, go into your settings and choose, download all new episodes. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less? A little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox podcast. It begins at. At Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.
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The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
