#1351 Caregiver Burnout Series: Part 1
A three part series about caregiver burnout with Erika Forsyth.
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Scott Benner 0:00
Hello friends and welcome back to another episode of The juicebox Podcast.
Today. Erica Forsyth is back, and we're going to do a short series on caregiver burnout, this is part one. 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 healthcare plan or becoming bold with insulin to save 40% off of your entire order@cozyearth.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 are the caregiver of someone with type one diabetes or have type one yourself, please go to T 1d exchange.org/juicebox and complete the survey. This should take you about 10 minutes, and will really help type one diabetes research. You can help right from your house at T 1d exchange.org/juicebox, Erica Forsyth is a type one herself and a therapist for families with type one diabetes to learn more about her. Go to Erica forsyth.com. Eric, can see you in person or virtually in California and virtually in Oregon, Utah, Vermont and Florida.
This episode of The juicebox podcast is sponsored by ag one drink. Ag one.com/juicebox when you use my link and place your first order, you're going to get a welcome kit, a year supply of vitamin D and five free travel packs. Can you name the only CGM that has only one sensor placement and one warm up period every year? Think about it. It doesn't matter if you can, I can. Eversense 365 is sponsoring this episode of The juicebox podcast, Eversense, cgm.com/juicebox, a year's a long time. The episode you're about to listen to is sponsored by OmniPod and the OmniPod five. Learn more at omnipod.com/juicebox use my links to support the show. Erica. How are you?
Erika Forsyth, MFT, LMFT 2:21
I'm great. Thank you. How are you? You're
Scott Benner 2:25
great, but your power just went out. We just got you back in time to record.
Erika Forsyth, MFT, LMFT 2:28
Yes, good thing.
Scott Benner 2:30
Things are happening now. It's Friday. Day's almost over for me. For you just getting started, but nevertheless, I get a note from you pretty recently, after we saw each other for the first time, Eric and I got to meet in person at the touch by type one event in Orlando, and you had an experience there that gave you an idea for the podcast. Can you tell people about
Erika Forsyth, MFT, LMFT 2:53
it? Yes. Well, first it was, it was such a joy to be at the conference and get to meet you in person, and Jenny in person, and all the wonderful people who run touch by type one. And just being there, I was there to speak in two different seminars, one for teens and one for caregivers, which was an absolute thrill to do. But also I was reminded how important it is to show up and do you know, participate in events like that, personally, because I was reminded of how great it is just to be in the room of hundreds of people, hearing the beep, seeing the things on our arms and being supported just in that way, physically. So I loved that.
Scott Benner 3:35
Do you feel like you got something out of it?
Erika Forsyth, MFT, LMFT 3:39
Yes, I think just, you know, even though I work in this field and I'm and support people living with type one and caregivers and with diabetes in general, I often don't do probably enough for my own benefit within in the type in the diabetes world. And so just the reminder that you're not alone is so powerful, yeah, and that, wow, looking in a room of people who know and understand what you do and how you live on a day to day basis is is so significant that it's almost kind of an intangible, unspeakable, and you know, it's hard to define, but You feel it? Yeah,
Scott Benner 4:20
I kind of found myself wishing I do this one thing. It's not really a talk, it's an hour with kids, and they range in ages, like, there's probably five, six year olds in there, up to, like, 14 or 15. But they don't let the parents in. There's somebody there from the organization and everything, but they want the kids to feel free to speak, and I just used it as an opportunity to let them find kind of commonality between each other. And then it opened them up. And I just started easily going around the room, like, What's it feel like when your blood sugar's high, and then, you know, what's it feel like when you're low? And what do you not like about this? Like, just real simple stuff. But you could see them a young kid, seriously, like a seven year old, looking at. 12 year old and go, wait, you have that thing happens to you too. That happens to me, you know. And then before you knew it, they were asking questions and making pronouncements about things they'd learned about their life and their health and everything. And I was like, wow, these kids, they know way more about this than I think people would give them credit for. It was really, it was eye opening for me, and it was helpful for them. Because, you know, on a basic level, one of the kids was like, Wait, why does my blood sugar get high when I'm at school? And then they all started talking about it. And then they realized about stress and anxiety, pressure, even just going in for a test, could make your blood sugar go up. It was wonderful. This little girl came up to me afterwards. I'm dying to interview her. I don't know who she is. I hope I can figure out who she is. But she came up to me with a notebook, and she asked me to sign it. And I was like, What? What are you? What are you doing here? Like, I don't think my my signature is not worth anything. She goes, No, I took all the notes of the stuff we talked about. I was hoping you would sign it. And she had pages of notes from the conversation. It's so cool. So that
Erika Forsyth, MFT, LMFT 5:58
is so great. It it creates a space for people to feel safe, to share what they're feeling. And I was so also impressed by the teens who were able to open up and just by one person saying something, and then they can say, Gosh, me too. Right? Like I feel that too. I've experienced that too, and that is the validating, normalizing experience that we all crave as humans, but in the diabetes world, that is so powerful. Just
Scott Benner 6:27
to let them say out loud, what feeling low felt like. And they all were like, oh, that's how I like just you could see their faces light up, like, wow, everyone feels this. It's not just me. It was a big deal, you know. So anyway, we were there. We had a great time. We met each other in person for the first time. It's awesome, yes, but you came away from the experience with an idea for the podcast. So what was that? Yes, so
Erika Forsyth, MFT, LMFT 6:50
I in the second seminar, I was, had the privilege to speak to caregivers, and I was, I was also blown away by the vulnerability that that the caregivers were able to share and experience in the in the group. And I thought in the session, it felt kind of a little bit like group therapy at times. And so I felt like, you know what? This might be powerful to bring that the talk that I gave at touch by type one here, and we can create it into a series awesome and essentially that the title and the focus was, you know, the caregiver burden. And I know we've talked about it before in various episodes together, but my hope is that by having kind of a really focused series on the caregiver burden, we would be able to create that experience for you here in the podcast, to validate your experience, to normalize it, and then to hopefully empower you with tools to not to maybe understand what's going on through your caregiver burden experience, and then actually give you some practical tools beyond deep breathing, which are, you know, It's always good and taking a walk, but beyond, beyond, kind of the the stereotypical coping strategies. So yes, well, how
Scott Benner 8:08
do you want to begin? I mean, this is your baby. So what do you think? Okay, well, I
Erika Forsyth, MFT, LMFT 8:13
think, just as we often do, kind of going to the definition starting with like, what is we talk about, the mental load of being a caregiver, we talk about the burden and that it's there's a there's a hardship and a loneliness that comes with it. And when, when we're talking about the caregiver burden, that kind of the true definition is the financial, physical, social, spiritual and emotional or psychological stressors that accompany caring for someone with chronic illness. So those are a lot of different factors that are really significant in life, that are impacted that I know you, you all experience as caregivers. And as a quick note, I also just want to say yes, I am I am a parent. I am a caregiver. My child, one of my my fourth graders, actually sick at home today. But I am not a caregiver to a child with type one. And so I was just even thinking about like, gosh, if she were, if she had type one, and I was trying to do this, I'd be worried about her ketones and all the other things, you know. So I certainly understand what it's like to live with type one for you know, now 34 years, but I don't. I will never pretend that I know what it's like to be in Scott's shoes or to be in any of your shoes as caregivers, but I do have the experience professionally in walking alongside you as a caregiver to a child with type one, and wanted to validate that, I
Scott Benner 9:40
take your point. It's nice of you to say, but it does bear pointing out that just taking care of a child is not the same as taking care of a child who has type one diabetes. It's just, it's different, and it even, like you said, a sick day. I can remember them in my head like ardent sick everything stops anything you had planned that day kind of over now. Well, you know, like, you're going to be super focused on this. You're going to be running around, hopefully everything goes the way you want it to. If it doesn't, am I going to call the doctor? Am I going to, you know, the first time, the first time you realize that your kid has ketones, but their blood sugar is 85 but they need insulin. Fries your mind. You're like, what am I supposed to do? 85 doesn't need insulin, but ketones need insulin. Yeah, it's not, it's not for the fatal heart, that's for sure. Sorry, yeah, today's episode of The juicebox podcast is sponsored by OmniPod. And before I tell you about OmniPod, the device, I'd like to tell you about OmniPod, the company. I approached OmniPod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet because the podcast didn't have any listeners. All I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for OmniPod. They bought their first ad, and I used that money to support myself while I was growing the juicebox podcast, you might even say that OmniPod is the firm foundation of the juicebox podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omnipod.com/juicebox whether you want the OmniPod five or the OmniPod dash. Using my link, let's OmniPod know what a good decision they made in 2015 and continue to make to this day. OmniPod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about OmniPod, but please take a look omnipod.com/juicebox I think OmniPod could be a good friend to you, just like it has been to my daughter and my family. This episode of The juicebox podcast is sponsored by Eversense 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste a sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today at Eversense cgm.com/juicebox, one, year one CGM,
Erika Forsyth, MFT, LMFT 13:04
basically what we're going to do in in my preparation for the talk in the conference, I did some research, and I was curious to like what what research is out there, what tools from research are already out there to support caregivers for children with type one and coincidentally, there was research that was conducted and published just in March of 2024, and the title is called caregiver burden among parents of Children with type one diabetes, a qualitative scoping review. So these researchers, I'll just say them once here, so we won't repeat them. Azimi Johnson, Campbell and Monte Santi said, You know what we're going to do? We're going to look at all of the research that has ever been conducted on caregiver burden from 1995 to 2021, and they actually gathered, I think it was 1900 papers from there they, you know, had reduced it down through various filters of duplicates, but they and they wanted to ensure that every article identified all of those stressors that we that we discussed for caregiver burden. So they landed with 18 studies. And so from these 18 studies, they discovered six themes that are common and consistent through all of their research. Okay, so these themes are we're gonna what we're gonna do, and we'll start with the first one today, and then we'll break them down with each episode. So the six themes from all of these, from all the studies, are this. Number one, experiencing chronic sorrow. Number two, responsibility for glucose, highs and lows. Number three, managing T, 1d and night time. And sleep disturbances. Number four, making career sacrifices and choices to optimize T Wendy care. Number five, navigating social experiences post diagnosis and number six, isolation and stigma, and as a result of that, they're also everyone's endorsing, how much support they're finding from social support online. So I'm sure you all can relate, and all these things resonate. So from these six themes, we're going to discuss them as barriers to self care. Like, why is it we're going to look at the question, why is it so hard to create time, to take time for yourself as a caregiver? And so through that lens, we're going to discuss these themes as barriers to self care. And then after each barrier, we're going to discuss some tools, okay? That will help you find ways to, you know, to understand and then to make some changes, however big or small, to taking care of yourself. How does that
Scott Benner 16:11
sound? That sounds like a perfect plan. Excellent. Okay, yeah. Okay.
Erika Forsyth, MFT, LMFT 16:15
So what I'm going to do, so the for burden one experiencing chronic sorrow, I'm going to read a quote that is, this is all taken from this the research. Okay, so experiencing chronic sorrow as time goes by. There is not the same drama about the whole thing, but I still feel the despair and the loneliness when I let it come to me.
Scott Benner 16:39
I know that feeling right? You hold it, you kind of hold it all at bay on the other side of a wall somewhere, right? Because if you keep experiencing it over and over again, it just it crushes you. Yes,
Erika Forsyth, MFT, LMFT 16:51
yeah. So we know, and all across all the studies, and I know all the people you've interviewed and the people they work with, there's that initial sense of shock that we've talked about, that you've experienced, the anxiety, maybe guilt. What you know, could I have done anything to prevent this despair, the sense of overwhelm, feeling sad, angry, a lot of self doubt, as you're trying to learn so you're feeling all of that intense sadness, anger, grief, but then you also are forced to have to learn and educate, and so that is that initial shock and loss is very intense. Yeah, it's the the loss
Scott Benner 17:32
piece too. You think you're not sure what your life was supposed to be, but you're positive it's not going to be that. Now, you know what I mean, like the loss of possibility, maybe, or freedom? I don't know, but it feels like I've never, not heard anyone talk about it that way. You know,
Erika Forsyth, MFT, LMFT 17:49
I think I shared this in the in the talk, but I'm also remembering that you once said no parent ever gives birth or adopts or however you have your child with the expectation that they're eventually going to be diagnosed with a chronic illness like you never. That's never in your you
Scott Benner 18:07
never, yeah, there's no planning for that. No matter how thoughtful of a person you are, you never sit around going, oh my god, we're pregnant. You know what'll probably happen? You know, in year 17, they'll have a car accident, and like you don't. That's not how it works, you know. So you have all this hope and diabetes, somehow it doesn't just ding the hope, it dashes it completely. It just feels like it just removes all of it, and then you have to build back and realize that's not actually the case. But boy, it feels like that at first, yes,
Erika Forsyth, MFT, LMFT 18:40
and go ahead. No,
Scott Benner 18:42
I just upset. I'm already upset.
Erika Forsyth, MFT, LMFT 18:45
I don't want to be upset. And I think that's actually a good point. You know, as you are listening to this episode in this series, be mindful of maybe where you are in the day. And if it does, if this does trigger or evoke emotions. I do encourage you to let them come out, if you are able to, if you can give yourself that time and space in this kind of chronic sorrow. So we have this initial shock grief and loss. With that is the disenfranchised grief that I'm pretty sure we've talked about before, but I think it's important to go back to that disenfranchised grief kind of the definition is, it's also known as hidden grief or sorrow, and it can refer to any grief that goes unacknowledged or unvalidated by social norms or by your family or your friends, this kind of grief is often minimized or not understood by others, which makes it particularly hard to process and work through. And this type of grief is really is so common with those you know with us in the in the diabetes community. Because there is so much misunderstanding, you're suffering, you're grieving, and you want people to know, but you don't quite know how to communicate. That part, there's like this duality, right? But you and even when you try to communicate it, they don't quite ever get it. And then that leads you to maybe even feeling worse and more alone. And
Scott Benner 20:23
if you're caught in that, in that vortex, when you see a late night comedian, for example, like use diabetes as a, you know, in a joke line, or something like that, yes, that's where you get that feeling of like being minimized, dismissed, or just that unrecognized social problem. So that's where that comes from. Like, I need people to understand what this is, so that What the Why do I need them to understand so I can get past this part from me.
Erika Forsyth, MFT, LMFT 20:51
We want people to understand because that will decrease that feeling of isolation, okay? And but then we realized it's really hard to fully understand this severity and intensity of what it's like to care give and
Scott Benner 21:09
so you're isolated, and you feel helpless to explain it to somebody. Yes, so if they just didn't make that joke, you'd feel less isolated, and the pressure to explain it might be alleviated as well.
Erika Forsyth, MFT, LMFT 21:23
Yes, yeah. I mean, which is why, consequently, the community is so important for us, right? Because we do have that immediate understanding and decrease isolation and but in anything that you're going through. You want people, you want support, and you want people to know, but when you find that it's challenging or that they just can't quite get it, you then come to this point of, okay, how am I going to move through this? Right? Like, am I going to keep trying? And I think that's that's part of your experiencing this chronic sorrow and chronic grief is that journey of, how do I share? How do I be vulnerable so that people know and I'm talking even like family members, how do people know that I'm struggling without feeling like I have to share with them all the nuances of T, 1d, or diabetes. How do I let them know where I'm at emotionally and be vulnerable enough so that they can support me that I mean, that that's and that's a journey, that's a personal journey. So just noticing that yes, so
Scott Benner 22:36
you can get emotional validation from them. Is that what you're looking at. Like, yes,
Erika Forsyth, MFT, LMFT 22:41
emotional validation, like, I'm here for you. Like, wow. And, and we'll, we'll get to these more, even more specific tools in the in the social episode. But this is part of it. Is kind of trying to figure out, what can I say that elicits the response I need, and when I'm not getting it? What do I do next? How do I educate without having to, like, re traumatize myself, or having to re educate everybody and get the support I need?
Scott Benner 23:07
Yeah, I mean, once people really see you and there's affirmation about like, who you are and what you're going through, once they understand it, my expectation would be that they could be empathetic about it, and that probably begins a new process for you, right? Like, once, once those other people like, oh, they get it. They understand. They're not fighting with me anymore. It's not like, Oh, you're always been so difficult. I actually heard somebody say that recently, just in a social media post, this girl who's in a wheelchair, I didn't even know what for, and she was saying that her family says, Oh, you're always so dramatic. I'm like, okay, like, you know what I mean? Like, and she's, you know, she's like, I'm just trying to share my situation with people, and they just see me as, like, looking for attention. She's like, I don't want this attention. I this is not something I wanted, but it's interesting that you can get that pushback. I'm just I'm so stuck on the idea that I need those other people to understand and to be empathetic, but I can't keep putting myself out over and over again to explain it to them. Is that where the rub comes?
Erika Forsyth, MFT, LMFT 24:16
Because, okay, we're and I'm talking this could be at any stage in in your child's diagnosis, when you are struggling and you're exhausted and you want people to know, because maybe it's not even a want. Maybe you just need people like you just you need the emotional support. You just need like, Hey, I don't understand what's going on, but I see that you're really struggling, and I'm here for you. And it might even be hard to communicate that much to somebody. And it's not necessarily like you want people to know that it's hard. But when someone, and this is what this is exactly what is disenfranchised grief is that because. Is they don't know how hard it is. You might not ever get that, yeah, extreme, that validation that you really are needing and wanting, and that is hard. That's hard, yeah,
Scott Benner 25:13
needing biologically too. I mean, we're humans, are we're social creatures, right? So as long as the as long as your social structure is about what people expect it to be, then they're accepting of you. But then once the thing becomes too different or scary or unknown, or even some people get I've seen people have unreasonable fear that someone's illness will make its way to them. I can't tell you who this is, but I know a person who has a story of getting into a pool with cancer and other people getting out of the pool like that. And so now you don't get that like that, just biological need fulfilled for connection, for society, and, you know, a social group.
Erika Forsyth, MFT, LMFT 25:55
Yeah, yes. I mean and that. And this is why, if this, if this is particularly challenging for you to work through, to process this, the grief and the isolation, that's why group therapy, that's right. Group conferences, you know, are so significant and powerful. Yeah, it's just, it's just hard, and it's not impossible to work through, right? But I think it's important to have a name to it. If that's what you're noticing and experiencing, is feeling the grief, but then also feeling isolated and alone in it, that that is the disenfranchised grief.
Scott Benner 26:33
Do you think some people get stuck there forever?
Unknown Speaker 26:37
Gosh, that's a possibly. Yeah, and
Scott Benner 26:40
then it affects everything. You don't realize that. That's when you start seeing yourself becoming, I don't know, I'm not sure what the word is, but cantankerous, and just always thinking everybody's coming for you. And that whole piece that I do see sometimes, right, where some people are just so backed into a corner that, you know, and by themselves, that everything that comes towards them feels like a thing they just have to run from or attack back at, even if it's not attacking them. Yeah, you've seen that with people with type one who are older, right?
Erika Forsyth, MFT, LMFT 27:12
Yes, there's, there's a reason why, right, that perhaps you're stuck in that space. And whether that's past trauma, and we'll, we're not going to go into all of that. We'll plug our resilience series here. Yeah, if you, if this is you're noticing, gosh, I feel like I'm really stuck in this spot. There's a reason why. But if you're noticing that you're filled with the constant sense of resentment and bitterness and just you're ang full of anger, again, that's really normal at times. So not just not to dismiss that or minimize that, but if you're feeling stuck, and you've been in that place for years and years and years and years and years, I would encourage you to get to do some analysis around that. And what is that? What is keeping you in that stuck place? It's hard, it's hard step to acknowledge and to take
Scott Benner 28:01
when we're doing these, I'm always worried that I'm taking you from where you want to be. So I know this is good, okay, all right.
Erika Forsyth, MFT, LMFT 28:07
Well, this is, you know, these are points that I would I made in my talk, but because I don't have you know, you as a sounding board, this will make it more, you know, probably rich, richer, hopefully. Well, I'm glad the last point before we get into the tools for the chronic grief is that we know, we all know that grief is not linear, even though we know there are the stages, the five stages of grief. And while we can get to the place of acceptance that will look different at different stages of your journey with diabetes as a caregiver, and perhaps you you get, you kind of get through, I like saying, get through. And kind of, instead of getting over the initial diagnosis, you kind of get through those initial stages of shock and loss. And then you might feel like, okay, we've got, we've got a rhythm going. And then go back to the six your child's sick for the first time, your child goes to the birthday party for the first time, or goes through puberty or off to call, you know, all these small and big changes where you feel like you're the comfort and the security and the safety that you felt in managing and managing the diabetes and also managing emotions felt very secure. And then you go through this first time, and then that can just that sometimes it can set you right back to where you were. And this is for all the reasons that we talked about in the in the resilience series as well.
Scott Benner 29:32
Oh, for sure, I see it online all the time. There's hallmarks in people's lives, and those who are struggling are, for sure, going to be set off by them the first time they have to go through TSA with diabetes.
Unknown Speaker 29:44
Oh yes, I
Scott Benner 29:45
have to get an x ray. I don't know what to do. Do I take this off? Is the company going to really charge me for another one? Like it just falls off a cliff, like the worry and the anger and everything and the fear birthday parties? I used to play softball with my buddies, and now I don't think I can. Anymore I ride a motorcycle. Can I still do that? Like it just every little thing that pops up for people, it just over and over again. It feels like it starts over. And when you're sharing online in an open space, it's also interesting to see what people decide to come in and be supportive and say, Oh, I've been through that. Here's my support. There are people who are like, Oh, that's a thing I've been worried about, and now they're hoping maybe they can learn about it before it actually happened to them. Then there is this interesting thing that happens sometimes, if a person's been in the community too long and they've seen too many people say, I don't know how to bolus for a cupcake at a birthday party, they can almost get frustrated. They'll lose sight of the fact that this person asking this question, this is the first time this has happened to them. They are not everybody else. It's interesting, you know what I mean? Because suddenly you get, you get measured with I already saw people ask this question three weeks ago, and I'm like, that's not how a Facebook group works. They didn't see that, you know, like, like, this is the this is the time when they're going through it. And it always brings me some measure of comfort, because I think the things that are happening I see happen over and over again to people and over and over like, what if we could get to them with this information before the fear hit them? Then maybe it would be easier to deal with and quicker and maybe not as painful. So that's kind of where I come from when I'm making content.
Erika Forsyth, MFT, LMFT 31:23
But yeah, yes, we are all on our different stage and age in our relationship with diabetes, yeah, for sure. And we want to offer support and encouragement, and we always have to hold where you're you know, where am I in this journey? Where is this person coming from? And that could be hard to do if we're not pausing. No,
Scott Benner 31:46
no. This line here that you have in your note, grief is not linear. Intensity of grief can pop up at any time, and there's a lot of and there's first times for a lot of different things. It just just kept making me feel, made me just think about over and over again. Like, I don't know that people would understand how valuable the private group is for me, feeding the podcast, right? Because I it's almost like, sometimes it's almost like, you guys are all in a room together, and I'm like, behind a I'm behind like, a one way mirror. And like, you know, get to say, like, oh, look, that happens all the time, like we have lists of things you wouldn't imagine. One I just saw today was common questions that people have online, common fears that we keep lists of all that stuff to try to inform the podcast. So I didn't mean to make anybody feel like they're like a test subject on the other side of a piece of one way glass, but, but when they're willing to live their life out like that, besides all the great communal things that happen and the support that happens in the social setting, you're actually helping me to make a better podcast as well. So pretty great.
Erika Forsyth, MFT, LMFT 32:52
That is great. Yeah, good. So
Scott Benner 32:54
now we got to get to the schools, and we have all this sorrow, what are we going to do with it? Yes,
Erika Forsyth, MFT, LMFT 32:58
okay, so what? So, yes, what can we do? What can we do with this, this chronic sorrow, because you're caregiving for a chronic illness. So grieving without a timeline is the major tool here, and then we're going to go through some specific items. One of the things that I hear the most is having an expectation around when the grief should be over, and that then lends itself to shame, right? Like, okay, it's been a week, or it's been a month, it's been six months, it's been a year. We should be getting it by now. Why we should be and again, I'm holding both of these. We should be getting it now the diabetes management side, and I should be feeling better. I shouldn't be grieving as much. I shouldn't be crying as much. I shouldn't be lamenting as much. So not only are you feeling the primary emotion, which is the grief and loss, you're then piling on shame that you should be in a different spot, and that is keeping yourself kind of stuck in that cycle. I know this can feel complicated, right? Because you're saying, Well, it's a chronic illness. There's chronic sorrow, but don't put a pressure on your don't put a timeline or expectation around when you should be done. And so it is important to hold that loosely and give yourself that freedom to be on your own journey. And again, it might be more challenging for you and your own story because of your past history and past trauma. And so just by allowing yourself to say, okay, yes, it's been a year. It's been two years, and yes, maybe I feel better, but it still feels hard. Now we'll get into kind of the nuances of, you know, what's right, what's appropriate, but I think you you know, like, how are you functioning? Like, noticing some of the things that we're going to talk to right about right now, but I want to pause. Did you want to say anything?
Scott Benner 34:55
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Erika Forsyth, MFT, LMFT 36:48
me. I'm sorry that this is, yes, it is this is intense, this is heavy. This is what it's but it's real.
Scott Benner 36:55
But I do appreciate what you said about the timeline thing that happened to me, and now I'm acting like, you know, but it probably happens to everybody, like, Arden's one year anniversary. I don't know what I thought, but I thought I was going to wake up and magically understand diabetes that day. I don't know why we do that with arbitrary like, dates and times. And then I thought, well, one year wasn't enough. It'll be two years. And then the second year came, and I was like, I am not much better at this than I was last year. So, yeah, that's it's very important. But how do you, how do you give yourself like that loose hold on that idea that there's no timeline but guard against falling into an abyss you can't climb back out of either right?
Erika Forsyth, MFT, LMFT 37:35
Okay, great, great question. Scott, so I'm going to encourage you to notice a few things here in your in your thought process, and increase some awareness. So as we've already mentioned, you know, no parent envisions or expects the loss that's going to come, whatever that may be. But obviously, in this instance, we're talking about diabetes, and I encourage you, a lot of times, what I hear is the grief or the life that your child had before diagnosis, and then the grief and anticipation of a of a life that's going to be riddled with challenge and medical trauma for their child. And so the from the parents perspective, you know, you're you're grieving what was, and then you're anticipating a really hard life for your child, because that's all you maybe know and are feeling in the moment. And sometimes, then we, as parents, we put our own emotion or grief onto our child, not, you know, mistakenly not knowing or or we kind of feel like maybe we're doing it empathically. We feel like I'm, I'm going to connect with my child and worry for them and grieve for them, that it's going to be hard for them to play sport, it's going to be hard for them to go to college, it's going to be hard for them to find a partner. You know, all these things that, as parents, we worry about, I totally understand that, but then we have the diabetes there, and we project kind of worst case scenarios, and that's coming from the grief. And so I encourage caregivers, as you're grieving, to be mindful of how much is your own grief, and separate your grief from your child's journey and your child's relationship with diabetes and their own grief
Scott Benner 39:25
because they didn't have the same expectations for their life that you had, right? Exactly, so they're not judging their situation based on your expectations. Yes, they might not be nearly as upset as you are.
Erika Forsyth, MFT, LMFT 39:39
Yes. Ah, okay, that might not. How do you stop
Scott Benner 39:45
yourself doing that?
Erika Forsyth, MFT, LMFT 39:47
That might not make you feel better in the moment, right? But I think through a process of awareness, whether that's through journaling, through and, you know, obviously. Through therapy to separate your grief and your relationship with diabetes from your child's and obviously this is going to be so different based on the age and stage of your child at diagnosis, you will be surprised how much your child remembers before diagnosis. I will speak for I was 12. I don't remember what it was like to not have diabetes prior to 12, right? Some kids might remember who were diagnosed at five. They might remember, you know, everyone is different, so how do you separate it again? It's it's being mindful every time you're thinking, Oh, my child, are they gonna base? Are they gonna all the things I just said? Are they gonna play sports? Are they gonna find a partner? Are they gonna do all these things that I envision them to have this six? Have this successful, thriving life, that that is your grief and your worry and your they aren't feeling that when you start to feel and be mindful that gosh, is my child going to feel this? Their child is not going to feel that they mean, they may have, they may have challenges,
Scott Benner 41:00
yeah, but they're not gonna be overwhelmed the way you are, because expectation is really the it's the enemy here, right? Like, because you don't recognize that you had all the expectations you had the day before diabetes, and that most of the things you thought were going to happen, or the way you thought they were going to happen, they're not actually going to happen that way, but that gets to unfold slowly over years and decades, and so you adjust as you go, Oh, I thought my kid was going to play soccer because I played soccer, but it turns out they really love baseball because sports where you can't use your hands aren't sports. I'm sorry. I was just kidding. And like, so that adjustment happens when they're seven, and you go, Okay, well, I wanted to play soccer about you play softball anyway. It's okay, no big deal, right? Like, but when it all comes in one shot and your brain starts rolling through all of the expectations you had, you don't stop to tell yourself, oh, this wasn't actually going to go the way I thought it was going to anyway. So this isn't that big of a deal. You just say this is what life was going to be, and now it's not going to be that. And so we give like it said, it's all it's all ruined, you know what I mean? And then that's how you feel. But that's not the case. Like people are going to come help you, if you're in this community, they're going to say to you, don't worry. I did this with diabetes when I grew up, or I did that, or I drove here, like, you have any idea? I just shared Arden's graph one time while she drove to college, and it was an all day drive. She drove like, 12 hours one day, and so many people were like, like, adults who came back and said to me, this is so encouraging to me, I won't go on long drives. I'm like, oh. And I thought, God, you don't go. You're an adult. They won't go on a long drive because they have diabetes. And then just seeing some kid leave for college, and they're like, Oh, she did it. And then they just reset their expectation, and then then they do it. It's awesome. Actually, I'm sorry. I feel like I got you off track. Yes,
Erika Forsyth, MFT, LMFT 42:58
no, no, it's good. It's good. And we'll, that's a good point. We'll, we'll expound on that. Okay, going back to your question of, you know, giving yourself permission to grieve without a timeline, what do you do? How do you kind of keep yourself in check, right? Like, how do you know, and so noticing, I encourage you to notice the amount of time, like, literal time that you are grieving privately and publicly and again, this can be at any stage from diagnosis. And I told the story the conference I shared here again to shortly after, my brother was also diagnosed with type one, two years after I was and I remember we went out to a restaurant, and the hostess was walking us to a table, and she directed us to a table, and my mom said, We can't sit there. My children, both my children, have type one. And so she we kept walking us to another table, and I remember looking at my brother, and I remember being horrified, and just like, why did she tell this person what there's nothing to do about the table, like, what is, you know, I was just like, solely embarrassed and probably pretty angry too at the time, and upon reflection, I now think and believe that my mom was grieving. She obviously had nothing to do. She
Scott Benner 44:19
just wanted to tell somebody, I'm struggling. My kids are struggling. We have problems like, be empathetic with me, yeah,
Erika Forsyth, MFT, LMFT 44:28
like she, I mean, maybe she didn't like the table where it was just like, um,
Scott Benner 44:33
I got a card who says type one on it. We don't have to sit in a booth like a common person, by the way. I prefer a booth, but
Erika Forsyth, MFT, LMFT 44:39
I'm sure, I'm sure she, she probably didn't like the table, but it came out as both my children have type one and feel
Scott Benner 44:47
bad for me and give me the table I want. I gotcha. I got so
Erika Forsyth, MFT, LMFT 44:51
she, I mean, and this happens right? Like, we tell when we are grieving and we're kind of like just oozing out. And flooding over and again. This is normal when we are in a really intense situation. For a lot of people, a lot of people will hold everything in and not say anything, and a lot of us will will share everything to anyone who can listen, and she was grieving I needed to tell people. And didn't, you know was landing in different places, yeah, and so just noticing, are who are you? Who are you talking to? Are you talking about it all the time? Are you reading? Are you going, you know, again, the Facebook group, other social media, are you going there to find support or to share your story and receive some validation and normalization of your experience that is so healthy and probably really powerful for you in the moment. And then are you finding yourself hours later reading through traumatic story after traumatic story. So perhaps your initial motivation is to go to a community who understands you, to be validated, supported. You receive that. But then we're humans. We get, we get sucked in, and then, then we're, then we're experiencing kind of more vicarious trauma and reliving everyone else's trauma. And so just notice, how long are you doing that? What is the impact you don't
Scott Benner 46:28
want it to turn into disaster porn for yourself, where you're just like, Oh, I've worked through my problem. Now let me go relive it again and again and again and again. There's a difference between community and searching out those stories that why do people want to feel badly, though? Is it because at least they know how it works? I
Erika Forsyth, MFT, LMFT 46:47
think it's initially you feel validated because you're saying, oh, this person went through that too. This Karen is struggling with the same issue I am. Yeah, and that feels good, because then you feel that isolation is decreasing and decreasing and simultaneously, depending on how much time you're then exposed to can you become consumed and overwhelmed by all everyone else's trauma? Yeah, right. So there it is this. It's a sweet balance of finding it just going to support groups in person. I
Scott Benner 47:22
think in the 70s, my dad would have said you have to pull your head out of your own ass at some point. Is that, is that what you're saying? No, of course, that
Erika Forsyth, MFT, LMFT 47:34
is not what I'm saying. I think it's, it's, you know, noticing then this is, it is hard to and even as I say this, like notice your thoughts increasing that awareness of what you're doing is hard to do when you're exhausted and trying to just get through the day and trying to manage it all, yeah, not just your child's diabetes, to manage it all, so that even in and of itself may feel challenging, and the awareness piece of noticing how much you're talking about it, reading about it, crying about it, consuming yourself with it. There is a time and place for that. And notice if you feel like you're you're stuck in it, yeah. Also, you can
Scott Benner 48:15
just look at your kids while you're talking to other people, because if you've been telling the same story over and over again, they will be looking at you cross eyed. So, you know, has everyone not been in that situation where they're like, why is mom telling that person so much like, I have that story from when I was a kid. I was like, What is she's really oversharing here, yes, and I Yeah, I hear you. Yes. Okay, yeah. I just want to say like that to me, sounds like the most difficult part of all this, because I don't imagine that most people are standing up and saying, I'm gonna go do something now that is really unhealthy for me. Like, you know, you don't know you're doing it when you're doing it, to be aware of it to, I guess, helps you see it eventually. And then maybe then you can, you know, curb it somehow. But I'm sorry, go ahead.
Erika Forsyth, MFT, LMFT 49:01
Yes, it is. It is hard, and in the moment, you're dysfunctioning from moment to moment, day to day. Yeah. So these are, these are tools that, when you have the bandwidth to implement and start to noticing, what are the thoughts, what are my actions, and how are they impacting how I feel one thing that I know we've talked about before is the dear diabetes letter that I think is powerful. Whether you're living with diabetes or you're caregiving, doesn't matter what type, but oftentimes this goes back to you want people to know how hard it is to live with it, to care, give, and they don't really understand, and you hold a lot of feelings towards the actual diabetes, but it can't, can't talk back to us, you know, right? And so this is a tool that I know many people have found to be successful, to do not just once, but monthly. Or annually, and you're writing, you are literally writing a letter, dear diabetes, comma and let it all come out. Sometimes it'll be neutral, sometimes it'll be full of hate and rage and anger. Sometimes it'll be sadness. And I think if you do practice this kind of in a ritual way. If it feels helpful, it's interesting to always look back, because I think we often forget that we have healed or we have grown. And so when you can look back and be like, Wow, two years ago, I was in a real I really hated diabetes. Yeah, I tell you now all
Scott Benner 50:37
the time, a year from now, you will not recognize yourself today.
Erika Forsyth, MFT, LMFT 50:41
You do say that, yeah, it's just true. I'm sorry. And if we know it's it's so true, but we forget. We forget because it's hard to remember where you were and where you are today for sure. And so I think that can be a really effective oftentimes, what comes out in these letters, too, is an anger and kind of disillusionment with people's when they if they have a faith or belief in God or kind of the universe, whoever your relationship is to a higher power, if you have that, that often comes out in these letters, and people are surprised by that, and that kind of goes along with the expectation of what your life is going to look like.
Scott Benner 51:23
I mean, that's you don't even think about that, that that extra layer of it's not just like, oh, I wanted my kid to be able to do this thing, or I didn't want to be up in the middle of the night dealing with something. But if you have those beliefs, then somehow this, this entity, decided to screw you right, like that's, that's what it feels like, yeah, and that's got to be hard to deal with too. Okay, all right,
Erika Forsyth, MFT, LMFT 51:49
okay. The practical tool, the dear diabetes letter, the kind of psychological, emotional tool of noticing your thoughts and your actions, I have also found through, you know, professional work and also listening to all the stories on the podcast, that your past really does impact how you cope and with with the diabetes. And I have found that if you you know if you have past trauma or even specific experiences with diabetes that impacts your not only your grieving, but also your like, hope and belief that things are going to get better or or that it's just going to always be hard. Conversely, if, for example, when I work with caregivers who have type one and then their children have type one, it's a different experience because they have the belief and hope that they've lived with it. There's still grief. It's still hard, right? But it's different. And even for caregivers who have partners or other family members who have type one or another form of diabetes when their child is diagnosed and it's positive and it's positive, their grief is still there and present, but there's a hope that's easier to grab onto, as opposed to when you have a negative either experience with diabetes or a negative either medical trauma or trauma in general. And so I know, I know again, we've, we've spoken into that piece a lot, but I think it's important to park it here too.
Scott Benner 53:31
I'd be remiss not to say that when we did that four part series about resilience, how much I learned about past trauma and how it affects who you are in the future. Really, I thought that was awesome. But what you put together for that one, and so I'll throw it in here. It's episode 1229, 1235, 1245, and 1250, I mean, if you want to look into why you might do what you do, or react the way you react, it's, it's just super helpful for that, I think,
Erika Forsyth, MFT, LMFT 53:59
thank you. Yeah, I think it was, there's a lot of content there that might help you kind of understand and at this point that we're talking about right here, yeah, yes. And then if you are having difficulty, even having the bandwidth, time energy to notice your grief, obviously, having, you know, sessions with therapists or mentors, and if you feel safe enough, asking close family or friends to reflect back to you how you're doing. To say, it's a vulnerable question. To say, How am I doing with my grief? Like, how do you feel like I'm doing? And again, this is it's I want to make sure that you ask that in a in a relationship that feels safe insecure, a
Scott Benner 54:50
kind truth teller who understands the big picture, not just somebody who's going to look at you go, you're being dramatic, like that kind of
Erika Forsyth, MFT, LMFT 54:57
thing. Yeah, yes, right. So I'm talking. You know, mentors, pastoral counselors, therapists, maybe a really close family member that has walked with you for a long time, somebody who understands, somebody who understands and also knows you. Because at some point you might be healing in your grief. Again, we know that it's chronic, but you might be healing, and you might not even be aware of that. And they could say, no, actually, look, you, you were doing X, Y and Z, and you weren't able to do that last month or last year, yeah. Or they might say, gosh, you know what? I think it seems like you're you're still in a really hard and challenging place, and that might be because I don't know what's going on, but how can I help you? So again, it's a vulnerable question to ask non professionals, but it can be really powerful, right?
Scott Benner 55:48
Yeah, definitely vet out the person you're going to ask that from, if it's not a professional person, who can, you know, be thoughtful, a third party, that kind of thing, like, Yes, don't be surprised too. If either, if your spouse is either great, like at this, or not great at it, because they're also going through the same thing you're going through, but they experience it differently than you do, because when they were eight, something different happened to them than what happened to you when you were eight. And so it's, I know people, there probably are people who hear that think, oh, that's like therapy mumbo jumbo. But man, that I'm telling you that resilience series, I was like, Oh, my God, that. What's that list that the 10? How come I can't think of the name of the list of the things that, if you have a certain a number of them, have happened to you in the past. Oh,
Erika Forsyth, MFT, LMFT 56:36
the aces, yes, the adverse childhood experiences. Yeah. That
Scott Benner 56:41
thing opened my eyes. And I have more than although I couldn't remember the name of it right now, I have more than one time, more than a dozen times in my life, pulled this thing up in front of other people and gone through and went, Hey, have you ever experienced emotional, physical or sexual abuse? How about neglect? Emotional or physical and like, gone through it like that. And you can see people ticking in their heads, and then, you know, they come up with, like, Oh, I've got, like, four things on this list, and you and they go, oh, oh, yeah, oh, okay. And then they all of a sudden, see their situation, really fascinating. So anyway, yes, think we're to the end,
Erika Forsyth, MFT, LMFT 57:16
but I don't want to we're to the end. We are to the end. Yes,
Scott Benner 57:19
I can't. Thank you enough. Seriously, this is wonderful. I was so excited when you reached out about this. So thank you.
Erika Forsyth, MFT, LMFT 57:24
You're welcome. I hope it's hope it's helpful. Tell people where they can find you. Erica, forsythe.com,
Scott Benner 57:32
you have a website. Everybody's got a website, Erica, but yours is awesome. They should go check it out. That is my website. Yes, you can help people virtually in what states,
Erika Forsyth, MFT, LMFT 57:41
California, Oregon, Utah, Vermont and Florida. And
Scott Benner 57:46
you can see people in person if they're Cal California
Erika Forsyth, MFT, LMFT 57:49
or California. Yeah, I have an office in Southern California in Pasadena.
Scott Benner 57:53
Thank you so much.
Erika Forsyth, MFT, LMFT 57:54
I appreciate you.
Scott Benner 58:03
I'd like to thank the Eversense 365 for sponsoring this episode of The juicebox podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the Eversense CGM. Eversense cgm.com/juicebox, one year. One CGM, a huge thank you to one of today's sponsors. AG, one drink. AG, one.com/juicebox you can start your day the same way I do with a delicious drink of Ag, one, OmniPod five sponsored this episode of The juicebox podcast. Learn more and get started today at omnipod.com/juicebox, links in the show notes. Links at juicebox podcast.com. If you're looking for community around type one diabetes, check out the juicebox podcast. Private, Facebook group, juicebox podcast, type one diabetes, but everybody is welcome type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out juicebox podcast, type one diabetes on Facebook, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to juicebox podcast.com and click on bold beginnings in the menu. 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 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 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The juicebox podcast. 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, wrongway recording.com, you got a podcast. You want somebody to edit it. You want rob you.
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