Don Rosenstein and Justin Yopp are both psychiatrists at the University of North Carolina at Chapel Hill. They started a support group for widowed fathers of young kids, whose partners died from cancer. The group was supposed to meet for six sessions, but ended up meeting regularly for nearly four years. Their book, “The Group: Seven Widowed Fathers Reimagine Life,” details the participants’ experiences and the role the support group played in grieving and healing. In this interview, Don and Justin reflect on the men’s unimaginable loss, recount key conversations they had together, and share what helped the men each find a path forward. The group found solace in their very specific shared experience as widowed fathers, but the insights about grief in this interview are relevant to a much wider audience.
Transcript:
[00:00:00] Sarah Cavanaugh: Hi, I'm Sarah Cavanagh, and this is Peaceful Exit. Every episode, we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible, impossible to explain, and they translate it into words on a page. My guests today are Don Rosenstein and Justin Yopp.
[00:00:26] Sarah Cavanaugh: They are both psychiatrists at the University of North Carolina at Chapel Hill. Several years ago, they started a support group for local widowed fathers of young kids whose partners had died from cancer. It was a rich experience for them. It created a lot of meaning and connection for the men involved and for Don and Justin.
[00:00:46] Sarah Cavanaugh: Their book, The Group: Seven Widowed Fathers Reimagined Life, details everything from how the group got started, how it evolved over time, the conversations that these guys had with each other, their big and small victories and struggles. They were grieving and they were trying to parent at the same time.
[00:01:06] Sarah Cavanaugh: I love this book for so many reasons. If you're a widowed parent, you might feel less alone. If you have a friend or family member who's a widowed parent, you're going to get a deeper understanding of the unique challenges they are facing. If you run a small group cohort of any kind like I do, we even dive into group dynamics.
[00:01:25] Sarah Cavanaugh: It's fascinating. As hosts of the group, Dawn and Justin share insights about grief that are relevant to a wide audience.
[00:01:37] Sarah Cavanaugh: Welcome to Peaceful Exit. How did this come about? You wrote this book. Um, how did this group start?
[00:01:44] Justin Yopp: So, uh, Don and I each work at a cancer hospital, UNC Cancer Hospital, and I'm a psychologist on psychiatrists. And it was a little over 13, uh, years now. It just so happened that I was working, you know, we work primarily with patients who have cancer, of course, and I was working with several relatively young.
[00:02:05] Justin Yopp: women who were all married and all had children at home. And sadly, around the same time, not too far from each other, these three women died from their cancer. So I had known them and Don as well. And we were talking about it at one of our clinical rounds where we have time where we talk about difficult or challenging cases and kind of support each other and got talking about these.
[00:02:27] Justin Yopp: And Don said, you know what, you should look for a, some kind of support group for their husbands. Cause I can't imagine what they're going through just having lost their wives. And raising kids at home, I thought, yeah, that's a great idea. And so I went back and looked for a support group to refer them to.
[00:02:42] Justin Yopp: Found that there was nothing, not only really in our area, North Carolina, but as far as I could tell, as far as I could find online, anywhere else either. And so I thought, well, there's no way to refer these guys. This seems to be a need that we could maybe start to fill. Why don't we start a support group?
[00:02:58] Justin Yopp: And so we did. And. We thought we knew what we were doing, maybe, back then. We had, we, we even planned for it to be a six session meeting, get these guys together, break it up to where we would kind of do a little psychoeducation at the beginning, and then save some time for group discussion. And by the end of that first meeting with these, uh, incredible seven guys, we were disabused of the notion that we had as much to teach them as they had to contribute to each other.
[00:03:25] Justin Yopp: And so, moving forward, we scrapped the plan of psychoeducation, turned it into all kind of a group discussion where we gave the onus of what was going to be discussed to the men that they would bring to the table what felt most important to them. And one of the guys said, you know, if this happens to work and this is important and helpful, why are you guys living it just to six sessions?
[00:03:45] Justin Yopp: And we didn't have a good answer. And so we said, well, let's just keep it open and open it up. And we did. And that group of men met together for just about four years.
[00:03:55] Sarah Cavanaugh: That's incredible. And I really admire the fact that when you did gather them, that you let them sort of [00:04:00] set the agenda versus, you know, you had your plan, but they obviously needed something different and you were open to that.
[00:04:08] Sarah Cavanaugh: I think from the outside, if you're not living this experience, it can be hard to know what to do or say. I appreciate that the details you share in this book really give me some insight into the nuance of their grief.
[00:04:22] Donald Rosenstein: I hope what comes through in the book is that organizing, consolidating theme, which is about essentially reimagining a future that you thought you had and then you didn't have.
[00:04:35] Donald Rosenstein: For me, when generalizable happened one night when, for whatever reasons, the conversation in the group Went in a direction of, in a sense, mourning something that you lost, but that you never really had in the first place, which is your future. And I shared a story about being the father of a son with [00:05:00] autism.
[00:05:00] Donald Rosenstein: And part of the story was that I went through a process when my son was first diagnosed with severe autism. Where I had to mourn this imagined future that I was going to have with my son. I never had it, it was never promised to me, but I was still anticipating it. And so if, if there's a core theme that we tried to capture in the book, it's just that, which is all of us have this picture of how our life is going to go.
[00:05:28] Donald Rosenstein: It's like when you miss the last step on a flight of stairs, you're expecting it's not there or what a jolt it is because you're acting as though it's going to be there. And so I think that was, um, what we tried to capture because all of these guys were in the process of putting together a new version of what they thought their life was going to look like.
[00:05:48] Donald Rosenstein: And at the same time, they were mourning what they had had, what they had lost. Yeah.
[00:05:54] Sarah Cavanaugh: Yeah. So as a mom, I can't imagine what it felt like to feel like the wrong parent died. And you're fathers, I'm a mother. How does that resonate with you as fathers?
[00:06:08] Justin Yopp: It was what one of the fathers in the group, Neil, said that in one of our meetings.
[00:06:12] Justin Yopp: And he didn't say it as to shock anyone or to be provocative in any way. It was almost just a comment he made. Like he assumed everyone felt that way because to his mind at that point, newly widowed, his wife held a much more important place in their family's life and especially the kids lives than he did.
[00:06:33] Justin Yopp: And he felt as far as the kids were concerned, the wrong parent died, right? That they would have been better off with a surviving mother than with a surviving father. And there was actually some discussion and even debate about that in the group that night, which was great, you know, showing that these guys weren't just in lockstep at every point of the way, right?
[00:06:51] Justin Yopp: A couple of other fathers said that's. Yeah, well, yeah, hold on. That's, that's not the way I would look at it. That's not the way I've been looking at it. Right. And a couple of [00:07:00] fathers said, well, you know, actually I kind of feel the same way. And so it was a really nice moment for the group. and the cohesion of the group to know that they could be on differing sides of an issue like this.
[00:07:09] Justin Yopp: And I think to your original point that as far as it kind of hit me, and I don't know about Don, but for me as a father, I, I don't know how I would have felt, right? I'm not a widowed parent, but I could see where he was coming from, right? And the truth is you can't replace what another parent does, mother or father, male or female.
[00:07:26] Justin Yopp: And even though our guys at first tried to do that, and then some. There's just no way to make up for that. These father's kids went through a horrible thing and these men were there for their children in a way that I think became more apparent to them over time that they were not just doing good enough, but that good enough was plenty good enough and that they were connected and present with their kids and they don't have to be.
[00:07:52] Justin Yopp: A replica of the mother that lost or to make up for that in any full way because she can't.
[00:07:56] Donald Rosenstein: Yeah, it's a really interesting question though. And, you [00:08:00] know, Sarah, we started with the Widowed Fathers group because that was where the clinical work led us. And then several years later, we started. And when I say we, I mean, the University of North Carolina, I mean, me and Justin.
[00:08:13] Donald Rosenstein: But we started a group for widowed moms, and I, we've never asked the widowed moms if any of them ever felt like the wrong parent died, because I'm sure for some of them For some of the parents in either group, there was a division of labor and roles that you know, may have resulted in someone feeling like, yeah, the other parent who was much more involved in the day-to-day parenting shouldn't have died.
[00:08:36] Donald Rosenstein: Right? It's so hard to be a parent. It's even harder to be a single parent. It's even harder still to be a single parent who is simultaneously doing it alone, mourning their co-parent, helping their children mourn the loss of their. And so I wonder if some of it is just feeling so overwhelmed that you can't help but think somebody [00:09:00] else, my spouse or my partner, might have done better than I'm doing.
[00:09:05] Sarah Cavanaugh: Yeah, I love the evolution from the dads being sort of perfectionist and wanting to get everything right and just like their wives and then, you know, the sort of the evolution to the good enough.
[00:09:16] Donald Rosenstein: One of my favorite moments is when they were sharing tips, life hacks about how to get through the day. In a subsequent group, we had one dad who had, what was it Justin, was it five kids or six kids?
[00:09:29] Donald Rosenstein: I can't remember. But. He was talking about how he was spending every evening making all of these sandwiches for school the next day. And one of the other dads just said, that's nuts. Why don't you get your oldest kid to make sandwiches at night?
[00:09:42] Justin Yopp: And that never occurred to him. It was like a eureka moment where I was like, oh my gosh, I can have them chip in and not have to do everything.
[00:09:50] Justin Yopp: He came back the next month and said that his kids were now on the assembly line of making PBJs the night before.
[00:09:56] Sarah Cavanaugh: I love that.
[00:09:56] Sarah Cavanaugh: Yeah. So what made the group work?
[00:10:00] Donald Rosenstein: Justin mentioned a word earlier that I think is exactly right, and it's cohesion. We had one guy a few years ago who would walk into the group, sit down, and say, I need the wisdom of the group.
[00:10:12] Donald Rosenstein: The whole was greater than the sum of the parts, and each of the men had a sense of ownership, that they were responsible to the other guys. Gives you goosebumps on occasion when you see how they connect with each other and how good they are to each other, even when they're challenging some of the things they say.
[00:10:31] Justin Yopp: And how unexpected it is for most of them that the group is this valuable to them, right? For a lot of the guys, there's some hesitancy to joining a group of people you don't know and talking about the most personal and tragic thing you've ever experienced. And then when you do that, it might be a little bit of a cathartic experience in doing it, but then when you're received and you hear other people say things that you've been thinking but have not shared with anyone else, and then it works, it's like, not only does it work, and that's wonderful, but it [00:11:00] really is almost a surprise to, at least initially, that it works and that you feel a connection with people who you didn't know an hour and a half earlier.
[00:11:08] Justin Yopp: No, it's validating. It's really. Yeah, that was totally validated. When a father says something and we see a bunch of heads nod, that's when you know that you're getting ready to get into a good little stretch.
[00:11:19] Donald Rosenstein: There's another part of this which is, I think, really important, which is that they don't have to explain to anyone else what they're doing there.
[00:11:28] Donald Rosenstein: And sometimes what some of the veterans in the group will say when a person joins for the first time is, kind of, welcome to our shitty club. We're sorry you're here. And so what's interesting about it is that they say things to each other, and they talk about things with each other that they can't or won't talk about with anyone else.
[00:11:50] Donald Rosenstein: Some of the humor can get a little dark, but they all get it. Some of the, um, I wouldn't quite call them confessions, but it's close to that. [00:12:00] Some of the disclosures about their thoughts and their feelings and so on, they wouldn't say to anyone else. That's one of the few places where they can talk about the ways in which their marriages weren't perfect, but without kind of feeling like you're saying something bad about your late wife.
[00:12:20] Donald Rosenstein: Yeah. And so it just, it gets real and there's a sense of, it's safe here.
[00:12:26] Sarah Cavanaugh: Well, in your book and your videos, the men don't necessarily refer to themselves as support group people, but in your work with men and fathers and families, have you seen extra barriers for the dads because perceived notions of masculinity either individually or as a culture?
[00:12:48] Justin Yopp: Yeah, I think that's certainly true. We don't have any data necessarily to support that, but I, I think that's absolutely true, right? That's kind of one of the sayings that one of the men said at the first group [00:13:00] was, you know, I'm not a support group kind of guy. And we got a bunch of, I'm not, I'm not either.
[00:13:05] Justin Yopp: Yeah. You know? And, and so, yeah, whether that plays it, it probably does play into masculinity or, you know, kind of whether or not men can. Be vulnerable and reach out for support like that. So I think there are some barriers in getting guys into the group or having men kind of take that leap into the group.
[00:13:23] Justin Yopp: Once they're in the group, the barriers are not an issue. Yeah.
[00:13:27] Donald Rosenstein: And I would add one other thing to that, which is I do believe. That for most of the men who have joined up, the ticket in the door was they wanted to help their kids. They had a sense that their kids had been through this horrific experience, and they didn't want to screw their kids up more, to quote one of the fathers, than they've already been screwed up by their mother dying.
[00:13:52] Donald Rosenstein: And so, they were there in a sense, not for them, although ultimately it was for them, but they were thinking, [00:14:00] I'm here for my kids. And I, quite honestly, I was thinking that as well when we first started this. The motivation for me was I knew just enough about early parental loss to know that if we could help the kids by helping the fathers, we'd be doing good.
[00:14:15] Donald Rosenstein: And along the way, it became reward enough to just see these men kind of heal and grieve and move on, but I absolutely have no doubt in my mind that for so many of these guys, the blow was lessened by their fathers getting help and also modeling for their kids that it's okay to go someplace, you know, once a month or once a week or whatever it is, and talk about your feelings and get some help.
[00:14:41] Donald Rosenstein: Without dragging their kids and forcing them to get into therapy after they lost their moms.
[00:14:46] Sarah Cavanaugh: That's fantastic. You've done so much good and I love how you reflect the evolution, the healing across the four years that they're together. It's really, really well done.
[00:14:55] Donald Rosenstein: Thank you.
[00:14:57] Sarah Cavanaugh: I want to talk about the really helpful context you [00:15:00] share in the book about Elizabeth Kubler Ross five stages of grief.
[00:15:04] Sarah Cavanaugh: Her work was groundbreaking at the time, it started a national conversation about death that we really needed to have.
[00:15:10] Justin Yopp: Yeah.
[00:15:11] Sarah Cavanaugh: But her stages of grief were broadened way beyond her initial writing, and I think it's important to talk about that. Because her stages really didn't work for the guys in your group, and I don't think it matches the grief experiences that many of us have.
[00:15:25] Donald Rosenstein: So I read On Death and Dying when I was in college. I'm older than Justin. And it was a remarkable book and it radically transformed the conversation about death and dying in this country. And I kind of went back and read it when we started doing this work many years later. And that book was based on interviews with people who were anticipating their own death.
[00:15:48] Donald Rosenstein: who were observed in conversation through a one way mirror. There were about 250 subjects in that original book. The chapter on bargaining was all of like three pages [00:16:00] long, and whether anticipating one's own death, if there are stages, whether those are the same kinds of processes that people go through who are mourning someone else's death is an open question.
[00:16:15] Donald Rosenstein: And I think on both counts, it's not quite right. I think that the stages of grief followed from a longstanding psychoanalytic tradition of kind of stage development. You know, oral, anal, genital development, you know, from Freud and so on. That was the way that people were thinking about how human growth and development goes, even in adulthood.
[00:16:39] Donald Rosenstein: And there's plenty of evidence for that in kids. But in this case, it actually, it wasn't based on a lot of data. And there was a group in, uh, New Haven, just to remind me of who the lead Um, author, it'll come back to me. Holly Priggerson, I'm sorry. There we go. But they actually did a longitudinal study [00:17:00] trying to validate these stages.
[00:17:02] Donald Rosenstein: And there was some validation, but the important point is that people don't go through these stages in a linear fashion. And in fact, the data that have been gathered over many years in my estimate of the literature is much more supportive of this dual process model of grief that's more dynamic, oscillating.
[00:17:24] Donald Rosenstein: You end up looking backwards and doing loss related grief work. And you have to look forward to do adaptation related work. And you oscillate between those with occasional pauses so you can catch a ballgame or a movie or whatever you need to do to clear your head. But that over time, that oscillation attenuates.
[00:17:47] Donald Rosenstein: It never really stops. You're never really over grief. And it certainly doesn't take just six months, okay? It takes longer for most people. for sure.
[00:17:58] Justin Yopp: I'll say when we talk with the [00:18:00] guys in the group about the five stages and or talk to them about the dual process model, I think in our 100 plus fathers, we've never had one that says, you know what?
[00:18:10] Justin Yopp: The stage theory still really resonates with me. What we do hear a lot of is that the dual process model does resonate. It does capture the looking back and the moving forward and the whipsaw between the two. And it also the dual process model does not assign emotions or feelings, right? Because by naming five things, you know, bargaining, acceptance, almost implies that there's just five things, right?
[00:18:38] Justin Yopp: And then it's really, I think, easy to say, well, I also feel anxious. I also feel relief. I also feel all these other things that aren't anywhere captured in those five stages, much less not in a subliminal order.
[00:18:51] Sarah Cavanaugh: Yeah, I agree. The grief kind of encompasses every emotion on the wheel. There's really no putting it into those boxes.
[00:18:58] Justin Yopp: We've had a couple of dads who've mentioned, or at least alluded to, that they've tried to align their experiences with the five stages, and it's felt like putting a circle into a square hole, right? A hundred percent. And the thought can be, am I doing grief wrong? Because I'm not doing it like this, or like this model, and of course they're not doing grief wrong, but no one knows how to do grief when they hit something like this for the first time.
[00:19:23] Donald Rosenstein: Right. It is also true that even though I agree completely that the dual process model is less pathologizing, it is also true though that The authors of the dual process model, Strobe and Schutt, know, I think very accurately, that if you get stuck in one domain or the other, if all of your effort is in looking back, and you're not making adaptations to moving forward and adapting, um, that's a problem, If you are so forward thinking that you never spend time allowing [00:20:00] yourself to feel the loss of who you had and what you had and what your family was like, then that's problematic too.
[00:20:08] Donald Rosenstein: And I do think that that was a challenge for a lot of the men, has been over the years, because from day one after they bury their wives, these men have to get their kids up in the morning, get them dressed, go to school, keep a job, do all of those things. It's very forward looking. And one of the more poignant moments that we have frequently in the group is when they're together and they allow themselves to kind of sit in that space of, this is really terrible.
[00:20:39] Donald Rosenstein: I really, really miss her. And I get in bed at night and the person that I most want to talk about, how am I going to deal with this is not there. Those are the kinds of things they share with each other. And so they allow themselves to get into that kind of loss oriented mentality that's described in the dual process model.
[00:20:59] Sarah Cavanaugh: I remember at one [00:21:00] point, one of them was dating and the woman walked in and there was a shrine to the wife on the piano or something, and she was like, I think it's time to get rid of that. How do you know if you're stuck in your grief?
[00:21:15] Justin Yopp: I think, you know, if you're stuck in your grief, really, are you not tending to things that you need to do?
[00:21:21] Justin Yopp: Are you not looking forward? Can you not kind of envision a future that feels meaningful or, you know, even kind of the opposite where you're stuck in bed? And you're having more days than not that you call off sick from work or don't tend to your kind of life responsibilities because you're just kind of stuck in thought and stuck in grief.
[00:21:41] Justin Yopp: And it's really helpful sometimes to look through a photo album and shed some tears. If you're doing that every day for weeks and months on end, that's probably not helpful. I don't know if that's a very descriptive answer, Don. You probably have a better one.
[00:21:55] Donald Rosenstein: I don't know if I have a better one, but I'm a psychiatrist by training and [00:22:00] The critical variable for kind of when you get to a place where you say, Yeah, this is a problem that needs some clinical attention.
[00:22:08] Donald Rosenstein: It's just what Justin was saying. It's kind of a functional assessment. If you can't go to work, if you can't get through the day, if you're not getting out of bed, if you're not getting dressed, if you can't get through a conversation with someone without bursting into tears. Now, all of that is very normal.
[00:22:25] Donald Rosenstein: in the first kind of period of time after something profound happens to you. And even though I'm not a believer in hard and fast timelines, if you're still there a year after, a year and a half, two years after, if you're just not moving on in various ways, and the degree of pain and suffering is such that it's interfering with core parts of your life, then you're probably stuck in grief.
[00:22:53] Donald Rosenstein: And there's no question that a percentage of patients, a small percentage, We'll have [00:23:00] some version of a prolonged grief, a complicated grief, some difficulty moving on that may require kind of specific psychological intervention or sometimes medications if you can't sleep at all, if you're not eating, if you're losing a lot of weight.
[00:23:16] Donald Rosenstein: It's really about kind of how it's going after a certain period of time. Not days and weeks, but months and years, I would say.
[00:23:27] Sarah Cavanaugh: Yeah, that makes sense. That makes sense. Um, these dads are not only navigating their own grief, but they're also navigating their kids grief. And parenting kids who are grieving, they aren't always on the same timeline or roadmap, and they had to kind of muddle through their parenting.
[00:23:47] Sarah Cavanaugh: Their kids, you know, weren't sitting down with them and having an open conversation, especially the teenagers, a tidy conversation about their grief.
[00:23:56] Justin Yopp: So, to your point, [00:24:00] these fathers were faced with three primary tasks the moment after they lost their wives, or tasks, but primary areas to tend to, and that's their own grief, their children's grief, and then just simply keeping the trains moving at home and all that.
[00:24:16] Justin Yopp: And those are all present and pressing on day one. When we talk about children, it really depends if we're talking about a five year old, a ten year old, or a seventeen year old, right? And cognitive understanding of what they've lost and whether or not they think mom can come back or whether they understand that it's permanent and magical thinking happens at earlier ages.
[00:24:37] Justin Yopp: So it really depends a lot on the child's age and we've had some fathers who have had children at different ages and so it really means having to have some understanding of how children grieve At 5, 10, and 12. You know, certainly we hear, we have fathers who tell us that their children are clearly struggling, right?
[00:24:58] Justin Yopp: They're struggling, their grades are [00:25:00] affected, their sleep is affected. They don't want to hang out with their friends as much. They can't or won't talk about mom, or if they do, they burst out crying, and this happens for months and months or years. But then we hear a lot of fathers just say that their kids, quote unquote, look okay at first, right?
[00:25:15] Justin Yopp: And they seem like they're doing all right. They're going to school, their grades seem okay. And these fathers, I think, struggle with whether or not their kids are, quote unquote, okay, or whether they're kind of masking something. And then we see this a lot. They are kind of doing okay in the moment, but that doesn't mean that's predictive of how they're going to do necessarily in the future.
[00:25:36] Justin Yopp: And we hear a lot about fathers who say their kids look great and do okay. And then at some point down the road, the bottom seems to kind of fall out and it all comes tumbling out. And whether that's a kind of a delayed grief or whether the children reach a different developmental or maturity level and so they understand it differently, or they're in a new classroom and [00:26:00] their kids.
[00:26:00] Justin Yopp: They have now have friends who don't know their mom died, and so they're asking about my, whatever the changes that are, we see that a lot, kind of a delayed grief response. And so we'll talk to the mid about being not on the lookout for that, but being aware that that's a possibility. It doesn't mean they need to be suspect when their kids appear to be doing well, but it is a heads up that not only does everyone's grief not follow a linear pattern, but children's often, or even kind of more up and down than adults.
[00:26:35] Sarah Cavanaugh: So it's almost like you've got the dual process, but you've also got the age developmental stages on top of that.
[00:26:40] Justin Yopp: Yeah, yeah, that's absolutely right. And we, you know, we've had certain fathers whose children have been very, you know, two or three years old when they've lost their mom.
[00:26:48] Justin Yopp: And so, where's mom? And having to repeat that explanation of some form of why mom's not here. And then that children gets old enough to have a different explanation. And then that children gets to be eight or [00:27:00] nine and needs another talk about it and then everyone has their parents at their high school graduation and that's another kind of, so the developmental milestones that kids, you know, as a parent see my big blow through, sometimes the understanding of it, a reaction to grief can take twists and turns along the same way.
[00:27:20] Sarah Cavanaugh: Yeah, there was a really poignant moment in the book when, and I'm not. Remembering the dad's name, but the son came and wanted to know every detail. And it was a three hour conversation about every detail of mom's illness and dying. And it really shifted the conversation. So that deep, intimate, sort of, here's what happened was really important for that kid.
[00:27:43] Justin Yopp: It was very important. And so that just real quickly, that was Neil and his son was about maybe 12, I think at the time. And. Neil had noticed that his son had been more irritable and kind of short with him and eventually Neil called him on it and the son let it out and said he was [00:28:00] mad and Neil assumed he was mad that his mom had died and they were finally talking about it a year and a half later, but really the kid said, Dad, I'm mad at you because you didn't let me come into the hospital and see mom before she died and Neil had not explained, the kid didn't understand that his mom's death was rather sudden, that they didn't allow children in the ICU And that there was some confusion around really how that went down.
[00:28:25] Justin Yopp: And this kid had been bottling this up for 18 months. And it came out in a burst, and it came out in a messy fashion. But Neil had the wherewithal to push the pause button, sit down with his kid, and spend the next two hours beginning to hash some of this out. And he said he noticed a change in his son after that.
[00:28:44] Justin Yopp: Not that this isn't a fairy tale, things weren't all better. But that was a, that was an inflection point that things shifted after that. And so that's a, a great example of how this can go with kids and it's 18 months later and we're having a conversation that Neil didn't know there was any [00:29:00] conversation needed to be had.
[00:29:01] Justin Yopp: But this child who was 10 when his mom died, had not been told or didn't appreciate the circumstances around her death.
[00:29:09] Donald Rosenstein: One of the things that I spend a lot of time thinking about is the difference between being negatively affected by an event in your life And obviously, the loss of a parent when you're a child is a profound event.
[00:29:28] Donald Rosenstein: And it's impossible for me to imagine someone not being shaped, at the very least, by that. In the same way, or in maybe a greater way, than we're shaped by all sorts of things that happen. You know, when, if you move at a certain time and you lose some friends, or if you don't make a sports team, or if you've got unrequited love in high school.
[00:29:49] Donald Rosenstein: There are all sorts of things that will shape your life in various ways. Certainly the loss of a parent will do that. What's interesting to me is to think [00:30:00] about kind of where along the loss pathology spectrum that is, in other words, I think most of these kids are going to do fine. They're going to be changed for sure because of what they've been through.
[00:30:17] Donald Rosenstein: It doesn't mean they're going to be harmed. Now, there are some data. that are coming out, longer term follow up studies that look at what are called ACEs, Adverse Childhood Experiences. So, poverty, physical abuse, emotional abuse, sexual abuse, all sorts of bad things that shouldn't happen to kids. By any definition, loss of a parent when you're a child is an ACE.
[00:30:43] Donald Rosenstein: It's an adverse childhood event. And there are some studies that suggest that adults who have lost a parent in childhood have increased mortality compared to adults who have not lost a parent in childhood. And so, you know, there may [00:31:00] be some Psychological, physiological, biological, mortality related consequences when you look across an entire population, where you see a signal.
[00:31:12] Donald Rosenstein: What that means for any particular family is, you know, is not so clear. There's a difference between individualized outcomes and population outcomes, and we have that in all of medicine and public health. But it is an interesting question as to whether, kind of, it is a shaping influence or a deleterious influence, depending on how you kind of define it.
[00:31:37] Sarah Cavanaugh: Thank you for sharing that. To pick up the parenting thread, what advice would you give after all of the stories you've heard? And some couples were passing the baton. You use a great metaphor about the relay race. What advice would you give, since you are still in a cancer hospital, still serving cancer patients who will presumably [00:32:00] die and leave a parent, a solo parent, what advice would you give on passing the baton?
[00:32:06] Justin Yopp: It's hard to overstate how working with widowed parents has really shaped our work with those who have cancer, right? Especially parents who have cancer. And it's somewhat been intentional on our part is to learn from. The widowed parents to say, you know, basically, what would you have done differently?
[00:32:23] Justin Yopp: What did you do that worked for you? Right? That wasn't why we started this support group, but it's something that we have focused on since then is learning from the widowed men and women now to inform our understanding of how to treat parents with cancer. And so we do a lot of that here at UNC. In fact, uh, we just started a clinic early this year called the Parenting with Cancer Clinic where the focus is partly just that.
[00:32:50] Justin Yopp: How do you communicate with your children about your cancer and about your prognosis and treatment and all that. And the other part of the clinic [00:33:00] is we have a colleague who is a lawyer and she meets with the parents to discuss estate planning, wills, custody issues. When they come up and those issues turn out to be really, really important when you have cancer and when you have children and to have those discussions earlier and not later can make the world of difference.
[00:33:21] Justin Yopp: And so that's our clinic. Those are the dual focuses of our clinic. But to your point, when I meet with a parent in that clinic who has a questionable or poor prognosis, a lot of times, and we encourage this, they'll bring, you know, his or her spouse or partner with them. And I will not infrequently, if and when it's appropriate, mention our widowed parent program and mention What we've learned and what discussions that they can have now, what legacy building activities they can do with their children now, what things that can be said [00:34:00] now that may not be able to be said later, but are really important.
[00:34:04] Justin Yopp: What are some of those things? And not everyone I meet is ready for that, right? Not everyone I meet is in a position to have that conversation. And part of our job is to gauge that. But for those who are, for those who are in a place that appreciate their prognosis and appreciate that. Their son or daughter is going to be left with mom or dad.
[00:34:23] Justin Yopp: Helping them anticipate what life will be like for the surviving parent. And I feel like we can do that pretty well based on our work with widowed parents. That can go a long way, and it can go a long way in helping to at least think about passing that baton and what that might include. Again, this is, I don't mention this, this doesn't come up with everyone I see.
[00:34:45] Justin Yopp: It has to be the right timing. You know, we, we still hear from a lot of our dads that they or their wives or their partners did not do things or say things that they wish they wouldn't have done or have said, and you can't get back that time. There's a [00:35:00] window there that closes and you can't go back and open it.
[00:35:04] Justin Yopp: And so working with families to help them anticipate what are some conversations, what are some things to do now to help for the future is central part of our work with parents with cancer.
[00:35:17] Donald Rosenstein: The last point is so important, and this is more in the realm of anecdotes than hard science. But what our experience has been is that when the dying parent has candid conversations with their co parent about things that matter, to them about what they think, you know, thing.
[00:35:45] Donald Rosenstein: I mean, we had one, we had one guy in the group whose wife actually listed out things to do, including Kind of dating again at some point and finding love again at some point and there are [00:36:00] other fathers who never had anything close to a conversation like that with their spouses and felt like they were Wondering, guessing, wishing that they had known.
[00:36:12] Donald Rosenstein: So I imagine my kids are now Older and grown and out of the house, but I imagine that if I had a life threatening illness when my kids were little Knowing what I know now, I would have said to my wife all sorts of stuff about how I felt about she could do anything she wants after I died, obviously, but, you know, what I would, you know, what mattered to me, what was important, and what were some of the values and so on.
[00:36:36] Donald Rosenstein: So that would be one thing that I would just add to what Justin said and emphasize it. And the second thing that I think is really important is that we have heard through multiple formal studies that we've done asking parents about what's most important to them. Parents who have advanced cancer, parents who lost a co parent, and it's conversations with healthcare teams.[00:37:00]
[00:37:00] Donald Rosenstein: Being a parent is a huge part of people's identities. And it's often not discussed at all when it comes to medical decision making. Maybe it's thought to be too personal or whatever, but it seems to me that One piece of advice I would have for a parent with a serious illness, not just cancer, any serious illness is to talk with their doctors and nurses and people taking care of them about their role as a parent and why that's important to them and how that might inform some of their decisions because one of the things that is absolutely tragedy on top of tragedy is when end of life decision making does not take into account those core values.
[00:37:52] Donald Rosenstein: And people don't get a chance to say goodbye to their kids and they don't get a chance to kind of do whatever it is that's important to them that they want to do, [00:38:00] because it's kind of been left, not discussed.
[00:38:03] Sarah Cavanaugh: I really relate to that.
[00:38:05] Justin Yopp: Is that right?
[00:38:06] Sarah Cavanaugh: I lost my mother as an adult. She had cancer and was swept up in medical treatments and we really didn't get to talk about what she wanted at the end or how to make it happen.
[00:38:16] Sarah Cavanaugh: So here I am creating a podcast and one of the missions of this podcast is actually hopefully to provide a door or window into some of those conversations. So maybe they could listen to the two of you. in this episode, and it might spark a conversation, you know, with the parents.
[00:38:32] Justin Yopp: I'm gonna add one, just one quick thing to that is that it's really easy to put off these kind of conversations.
[00:38:39] Justin Yopp: It's really easy to think you have more time. And one of the fathers in that first group, Carl, said it succinctly and beautifully why he and his wife never really had these conversations. And he said it got to be too late before he realized it was too late. And she was cognitively impaired because of the metastatic breast cancer in her brain.
[00:38:57] Justin Yopp: And they never had that. He knew they [00:39:00] needed to, he knew that they would, and they never did. So that window closed, but he didn't know it was closed until it was already closed.
[00:39:07] Donald Rosenstein: There is a project that we are in the midst of right now that we're very excited about. And this is a project that was led by a colleague named Lisa Park, a physician.
[00:39:20] Donald Rosenstein: who worked with us here at UNC, and it is a online resource for parents who have cancer at any stage and who have kids at home, and it's intended to facilitate these kinds of conversations that we've been talking about. So what happens is we Ask a bunch of questions about who the parent is, what kind of cancer they have, what kind of prognosis they have, what's their understanding of it.
[00:39:49] Donald Rosenstein: And then we ask questions about their kids, how many kids they have and how old are they and which kid are they most worried about. And then essentially it involves a lot of [00:40:00] recommended template text language. where they could talk about kind of, you know, how they answer a question. You know, what do you say if your kid says, mommy, are you going to die?
[00:40:11] Donald Rosenstein: And you don't have to use that language. You can use your own, you can kind of substitute any or all of the recommended language, but it's meant to be a developmentally designed. Facilitator of difficult conversations so that you feel prepared for having those conversations given how difficult it is.
[00:40:37] Sarah Cavanaugh: Fantastic.
[00:40:39] Sarah Cavanaugh: Thank you.
[00:40:39] Donald Rosenstein: That should be up and running sometime in the next six months, we're hoping.
[00:40:45] Justin Yopp: Yeah, we're just analyzing the data, but the early returns show that parents find it helpful and that Yes. It increases, facilitates communication with their children around these kind of issues. Fantastic. And so the idea is if someone's seen here at [00:41:00] UNC, Where we are, then they can see me or Donald or colleagues, but a lot of folks are getting their cancer care at places that don't have psychosocial professionals and don't have people who can initiate these kind of discussions.
[00:41:12] Justin Yopp: And the idea is they can go on this website, fill in their information and get as personalized feedback as you can get, which we think is going to be a real step up from more general websites that cannot be as personalized as what we're going to be launching soon enough.
[00:41:31] Sarah Cavanaugh: Yeah. And I feel like yours is science based as well from your experience and your practice.
[00:41:37] Sarah Cavanaugh: I love that your book is short, but I wanted it to be longer. So I want, I want more.
[00:41:43] Justin Yopp: Well, we'll take that as a compliment. We kept it short intentionally. We wanted to be a book that people finished. Oh, we should also mention that any proceeds and royalties from the book do not go into either Don or my pockets.
[00:41:56] Justin Yopp: It goes all back into the program. You know, we didn't want to profit [00:42:00] off this story and the fathers were generous enough to. Let us write about them. Let us take their picture for the book and share their stories.
[00:42:07] Sarah Cavanaugh: You told their stories well, and they clearly were comfortable. The group photo there is really lovely.
[00:42:13] Sarah Cavanaugh: So did you say you're allowing widows as well as widowers in your group now? Or is it all still men?
[00:42:20] Justin Yopp: We have separate groups. Actually, Don and I run two groups for men and then a colleague of ours runs a one for women and we have. Asks every now and then we loop back and ask the guys and our colleague, we'll ask the women, you know, do we want to, you know, mix?
[00:42:34] Justin Yopp: Do we need to keep this segregated by gender? And every time the answer is yes, please keep it as is. Um, the men feel comfortable with men and I think the women are the same way. And do I think it worked fine if we blended the genders? I think probably so.
[00:42:49] Sarah Cavanaugh: Well, clearly you've actually created such a safe space.
[00:42:53] Sarah Cavanaugh: I mean, that's a talent that not everyone has to be able to create that safety for people to share. So that's a gift. [00:43:00]
[00:43:00] Donald Rosenstein: Thank you.
[00:43:00] Sarah Cavanaugh: That's a gift. Okay. Well, my last question, which is the question I ask all of my interviewees. What does a peaceful exit mean to you?
[00:43:13] Donald Rosenstein: I'm going to go first before I start crying.
[00:43:15] Donald Rosenstein: So it just so happens that I got back from Chicago a day and a half ago after being there for 10 days. My father is now 96 and he's at home hospice. And so I've been thinking a lot about that for him and then by extension for me. And for me, it is reasonably comfortable, dignified, and surrounded by family.
[00:43:44] Donald Rosenstein: That's what I'm working really hard. to do for my dad, which is to avoid the kind of, um, intense, highly technical end of life that I [00:44:00] see too often every day when I do consultations in the hospital. He's 96. We, it's very clear that he is not going back into the hospital. And I think that we have set up, I hope that my siblings and I have set up a exit ramp where he can die at home with his wife of 68 years, comfortable, and when, you know, when the time comes without us doing anything.
[00:44:30] Donald Rosenstein: He's my hero and I love the guy and, and even though he's a shadow of his former self, the grace that he is demonstrating to us blows my mind. So, for me, that's, that's what it means this week anyway, to ask me in two weeks or a month or whatever.
[00:44:46] Sarah Cavanaugh: Thank you. Yeah. How are you, Justin? What does a peaceful exit mean to you?
[00:44:51] Justin Yopp: Oh gosh.
[00:44:52] Sarah Cavanaugh: For your life?
[00:44:53] Justin Yopp: For me, for my life. You know, I'm used to one being the therapist. Uh, no, um. [00:45:00] Uh, I think a peaceful exit for me would mean that, um, that I've done right in the world that I've not lived anything close to a perfect life, but that I've added more good than I've taken from this planet and from the people in my orbit and, um, that I've left some kind of legacy, at least for the people who knew me and that, um, Those friends and family who I love know that I love them.
[00:45:36] Sarah Cavanaugh: Well, I don't know you well, but I think you both have left an amazing legacy already. So, thank you so much for your time. Very kind of you. And for your amazing book.
[00:45:44] Justin Yopp: Thank you.
[00:45:45] Donald Rosenstein: Hey, Sarah, thank you for reading it so carefully. Yeah. It's very clear that you digested it. Everybody who writes a book wants somebody to read it and actually, you know Take it in.
[00:45:59] Donald Rosenstein: You clearly did. And that's really nice. Thanks.
[00:46:02] Sarah Cavanaugh: Yes, I learned a lot and I will pass it on.
[00:46:04] Justin Yopp: We appreciate that.
[00:46:05] Sarah Cavanaugh: Thank you for listening to Peaceful Exit. I'm your host, Sarah Cavanaugh. You can learn more about this podcast at peacefulexit.net. And you can find me on LinkedIn, Facebook, and Instagram at A Peaceful Exit.
[00:46:23] Sarah Cavanaugh: If you enjoyed this episode, please let us know. You can rate and review this show on Spotify and Apple Podcasts. This episode was produced by the amazing team at Larj Media. You can find them at larjmedia.com. The Peaceful Exit team includes my producer, Katy Klein, and editor, Corinne Kuehlthau. Our sound engineer is Shawn Simmons.
[00:46:46] Sarah Cavanaugh: Tina Nole is our senior producer, and Syd Gladu provides additional production and social media support. Special thanks to Ricardo Russell for the original music throughout this podcast. As [00:47:00] always, thanks for listening. I'm Sarah Cavanaugh, and this is Peaceful Exit.
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