Siblings: My Brother or Sister has Schizophrenia - What About Me?

In this episode, we talk with our own daughters about the lived experience of the sibling when schizophrenia hits the family. The emotional toll on this group of family members is often swept aside in the wake of the crises involved in SMI. We give them a chance to speak.  

Guests: Our Daughters - Angela, Lucy and Ali

PAST:

1. What was it like for you growing up, as your sibling’s illness began?
2. When did you start suspecting something was wrong? 
3. Did you second guess any things your parents were doing for him?
4. Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)

PRESENT:

1. What is hardest for you about your brother's illness?
2. How do your friends feel about him? How do they best support you?
3. Has your life changed in any positive ways because of your brother?
4. Do you see yourself as a mental health advocate? If so, how?
5. What is it like now? Where are you on the “graph of emotions?
6. Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)
7. Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)
8. Do you feel guilty that he got sick instead of you?? (Laura Pogliano)

FUTURE: 

1. What are your major worries about when we parents aren't around to be front-line advocates for your brother? 

2. What do you see yourself being able to do and what will you need help with? 

3. What help do you hope will be in place? 

Final question: What do you most want other relative groups - particularly parents - to know about your experience as a sibling of someone with SZ? How can we best be of help to you?

Links for mentions:

NAMI Family-to-Family

Transcript

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SPEAKER_03 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye. Welcome to episode 19. We are so excited today because our daughters will be joining us. If you're watching on YouTube, you see Angela, who's one of our daughters. The other two, you'll just hear, and you'll get to know them pretty well. Now, sibling relationships can be amazing. They're a great source of meaning and enjoyment and mutual respect, and they can be challenging. Anyone who has a sibling knows that. But when someone finds out that their sibling has a mental illness and particularly schizophrenia, they have to learn to adapt and to cope with this. And I find in all the classes of family to family that I've taught that there are a lot of parents there, and usually one or two siblings in the group, and often the sibling feelings and the sibling experience gets overlooked. And so in this episode, we invited our own daughters to talk about the lived experience of the sibling when schizophrenia hits the family. So, Mindy, since we can see Angela, why don't you start by introducing Angela and then Angela, tell us a little bit about yourself, and then Mimi will go and I'll go.

SPEAKER_02 1:27

I would be very happy to. I'm always very proud of my daughter, Angela Grylenkeen. She um is a reporter or a journalist, and she started out with a Washington correspondent assignment for some newspapers. She's worked for a transportation magazine. She's worked for Bloomberg for many assignments, but one that was kind of fun was when she had the White House beat and got to fly around on Air Force One with President Obama. And um she also now is a managing um editor for Politico. She has been a president of the National Press Club, and she's currently the president of the National Press Club Journalism Institute. So she's got a lot of um media creds. And um also she found time with her busy life to take NAMI family-to-family classes, and I'm equally proud of her for that. So Angela.

SPEAKER_06 2:31

It is great to be here. Um thank you for the introduction, um, mom, Mindy. You can call her mom. That's that's okay. Perfect. Um yes, well, she pretty much covered my career. I'm a journalist, lived in Washington, DC for over 20 years, um, grew up in Minnesota, which is where my um parents and brother still live. Um, and the the one part of my bio that my mom left out is that I'm also a mother. Um, I have a teenage daughter um who uh is uh has has always, of course, been involved with her uncle, my brother, as well. Um, so that's another interesting part of the relationship, I think, too. And is Jim your younger or older sibling? Younger. He's two years younger, and um, we're the only two siblings.

SPEAKER_03 3:19

Okay, thank you. Mimi, are you coughing or can you be done?

SPEAKER_01 3:23

Done coughing. Okay. So I'd like to introduce my daughter, Lucy, who is the middle daughter. We have three girls and Nick. And Lucy, I'll let her tell you about what she does. I'll just tell you about who she is. She is really the light of our life. She is the most devoted, loving, supportive, wonderful sister anybody could ever hope for. And she has been, you know, just there for Nick all the time. And I know, and we'll talk about the difficulties of it, but from this vantage point, all I've ever seen is a sister who fiercely loves her brother and would do anything for him, and has also become her own kind of ad hoc um advocate and activist calling out uh discrimination and issues wherever she sees them relating to mental health and kind of changing the world one person at a time. So I'm incredibly proud of her.

SPEAKER_07 4:29

Thanks. Um, my name's Lucy. That was a very thoughtful introduction. Um I live in Nashville and um work for Delta Airlines and I'm a teacher. I'm also studying to become a new one. Um, as my mom said, um speaking of doing the right thing. Um I participated in a few dummy walks. I've always wanted to figure out other ways to be involved in dummy, and I think I see that definitely as my future. Um I make some art, um don't paint like the rest of my family, but I do a little bit of everything. I love to travel, and that's kind of what I do.

SPEAKER_03 5:27

All right, welcome. And as you can hear, Lucy's in her car driving home, as she told you. And so, Allie, I did not prepare a stellar introduction for you. So, but what I can say is Allie has been the light of my life since the moment she was born. She is, and it's gonna be hard for you, honey, to call your brother Ben, but just put Ben somewhere in front of you so you don't slip and say his real name. Uh, she is Ben's younger sister by almost three years. And Allie has, she's one of the smartest people people that I know. Like her intelligence with people has been amazing all throughout her life. And I have to say that Ben's love for Allie has been such a stabilizing force in his life to help keep him as straight and narrow as he can get, especially when he's angry with me. We were a single parent family for a lot of years and we fought a lot together. And for a while it was me and Allie against the world, and I couldn't imagine a better partner. Allie is happily married to Mark, who she met at summer camp when they were both counselors, and by some interesting quirk of nature, managed to give birth to three children in two and a half years. So, and no twins in there, and she's uh staying relatively sane, and she's the most amazing mother I know, and a great sister, and an incredible daughter, and sells real estate and works for a party planner, and someday we'll be a guidance counselor in the high school. So, how's that sound, Al? That sounds like I don't need to say anything because you said all my things there.

SPEAKER_05 7:10

Thanks a lot, mom. Sorry. Um that's okay. Um, hi, I'm Allie. And everything that my mom said is true for the most part. Although I don't feel those things about myself being like, you know, the best person in the world and all that. But um, no, I'm kidding. Uh I live with my husband and my three young children, whom I had very close together. As she said, I have two part-time jobs on top of momming all the time. Um, yes, I have an eventual plan to go back to get my master's in school counseling, which I kind of always knew I wanted to do ever since I really liked my high school guidance counselor and um undergrad studied psychology and then you know worked in social work briefly and then said, don't want to do this. Went and worked, always have worked with teens, um, worked in summer camps up to the director level. That's where I met my husband, and then um got married, had kids, and then kept having more kids. So that's why my master's has not happened yet. So it will happen when two out of three are in kindergarten. So that's gonna be in a year and a half, and that's great. I live in Connecticut, three miles from my mom, which is super helpful and wonderful. And um that's really it. That's it.

SPEAKER_03 8:40

Well, thank you. So can you hear me okay, by the way? Because perfect. Okay, okay. It's perfect actually. So now that we've all had a chance to to meet each other, which I think is was really important for us, because you know, we we three moms have never actually met in person. So now we have three of the daughters that we haven't met in person, but these conversations are helping a lot of people, and that's what this is about. So now that we've established ourselves, I'm gonna start with the first question. We're gonna talk about past, present, and future. Each of you has a brother with a serious mental illness called schizophrenia. And I I want to start by asking you about the past and what it was like for you uh growing up before your sibling developed an illness, and what it felt like for you as the illness started. I know that Jim's Jim's symptoms came earlier than uh Nick's and Ben's, but uh what was what was it like for you as the sister to see changes in your brother?

SPEAKER_07 9:49

Hi, sorry. Um to see the changes in my brother for me, um it was very difficult, obviously. My brother and I have always been very close. Um he and I were sort of like the two oddballs, I guess. I don't know, like we just we weren't like the rest of the kids in the neighborhood, and he sort of took me under his wing and showed me the world through his eyes, and like sort of helped me like understand like the things that I care about now. So when he started to get sick, it was just very hard because that connection was gone. I'm sorry.

SPEAKER_03 10:46

You're making me cry, please.

SPEAKER_07 10:50

Yeah, I mean, it just it was hard because it was like, you know, he's there, but he's not there, and because we were so close, and and he took me to my first concert, we'd go shopping for cool vintage clothes together, like he all the music I listened to is because of him, and so the strong bond that we had dissipated, and it just was really hard.

SPEAKER_04 11:20

Thank you.

SPEAKER_02 11:23

Um, Angela, I would follow up with that for you because um mostly when Jim was sick and when he was diagnosed, you were not at home. But um obviously Jim was getting sick, as Randy said, when he was a teenager and we attributed it all to drugs and didn't think about mental illness. But when did you start suspecting something was really wrong with him? You were closer to him. I was so busy at that time.

SPEAKER_06 11:50

Um, and I I would say I didn't suspect anything. So he, I was already grown up being older. Um, I guess I was really launched. I had graduated from college by the time he was diagnosed. Um, so I was living, you know, a thousand miles away. It was a pretty different experience, I think, not being there to see everything. And in some ways that made it, you know, it was it was easier in a lot of ways for obvious reasons with distance, um, but also, you know, more dramatic because you didn't see gradual changes. You saw changes, you know, after after many months, and of course, you know, heard about things from my parents. But I think um my mom probably shielded me from a lot as I was just you know launching my own career at that time. Um, and yeah, we were we were close to little kids, but definitely diverged as teenagers. Um, my mom just referenced, you know, drug use. That was not really the activity of my friends most of the time in in high school. Um, so you know, very different friend groups um as we went through high school and then um we went to college in in different states. But it was at the time he was diagnosed, you know, putting aside early symptoms that were missed, um, like we were just at the precipice of having an adult relationship. Um, so never really got to have that. So even you know, 25 years later, it's more of an older sister, younger brother relationship than as peers, which you would normally have if you're that close in age um as adults in middle age.

SPEAKER_03 13:28

Okay. Allie, um not gonna put words in your mouth. I was gonna say, I suspect your experience is more like Lucy's, but you Yeah, that really got to me.

SPEAKER_05 13:39

Um, like we're sitting here thinking about it, and I'm thinking, did I block this like stuff out? But I don't think I did. I was all I was like 15. So I was just little, I was just young, you know, younger.

SPEAKER_03 13:58

Yeah, you actually 12 when it when it started to get weird, but right, but that yeah, but we didn't know what it was.

SPEAKER_05 14:06

I definitely don't remember any of that. I mean, uh 12, 13, 14, I remembered, I just remember him being a big brother. Um overall, sure he had his his you know quirks and intricacies, but you know, it was years of such slow regression, decline, I would should say, I guess, um, into you know the abyss that is. And um that it was only when I was 14, 15. I guess that that I guess I have the real memories of it because that's when I felt like there was a big shift. Meanwhile, of course, I was growing up through that owned, you know, that period of time, going through my own difficulty and you know, hormonally and all that stuff. So obviously super self-centered as everyone is at that age. And then I high school, we were in the same school, and which was cool at first when he was a senior and I was a freshman.

SPEAKER_03 15:10

Well, you know what? You have because he had dropped out by then.

SPEAKER_05 15:13

Oh, you're so right, yeah. But he used to drive me, so people still knew him, but it was a little bit changing of like, oh, you know, your Ben's sister was cool for a while, and then it became a little bit less of like something that I guess I felt like not that I didn't feel proud of it, but it just changed, like people's reactions changed a little bit. Um, and so at home, for me, noticing it, I think I I noticed a lot more fighting between my mom and him. Um and I guess, mom, you and I used to used to talk about the changes that he was experiencing a little bit. I don't I don't know. I guess I just don't remember a lot of a lot of it.

SPEAKER_03 16:03

I mean, I think about I think about what what he was to you before that, like before he was in high school. Would you say you guys had a really good relationship?

SPEAKER_05 16:14

I can still say that we have I've always had a good relationship, considering everything. Like, yeah, we always had a tr level of trust between us, you know. Of course, there were periods of time um after he got diagnosed where we still had trust between us. There were still secrets between us, you know. Did he buy me booze when he would not when he was on age and we weren't? Yes, he still did that for me. And silly as it sounds, that was a big brother thing that all my friends' big brothers did for them. So it was like we still had a semblance of a relationship. It definitely changed, um, for sure, but we were still there for each other in a lot of ways. But of course, you know, I was experiencing the feelings of loss of kind of knowing moving forward as my my friends' big brothers were progressing and going to college and doing other things that you know that wasn't gonna be probably in the cards for him.

SPEAKER_01 17:14

I Lucy had her hand up there for a second. Did you have something, Lucy?

SPEAKER_07 17:19

Oh, I was just gonna say, like, it's it's really um like it makes me feel heard or something, like hearing you talk about your experience because it was like hearing you say it, like I could have said more. I think I just didn't know what to say, but like it was very similar. Like we were, I was like 14 or 15 when he started to get sick, and it was the same kind of thing, like we were in the same school, we would ride the bus together, and then like as he started to get sick, it was very similar. Like, oh, you're Nick's sister, and like you know, things started to shift, and all of his friends started going to college, also it's like very, very similar to what you were saying.

SPEAKER_04 18:09

Thank you.

SPEAKER_05 18:10

I felt heard when you were speaking as well.

SPEAKER_03 18:14

So I I I put this on Facebook on our uh schizophrenia three moms in the trenches page, and I just asked people what they would like us to ask you. And so we're trying to lump our questions into your past, and you guys have expressed it beautifully and where you are now, and maybe fears for the future. And we will talk later. Uh, we want to stay with some positives, and you've already brought them up with you know, what has your life changed in positive ways because of your brother? But we'll get there. I have one question that came from somebody named Kathy, Kathy Day, another uh mental health advocate that we know. And Kathy wanted to know from you guys did you ever resent your brother for needing your parents so much? Did you resent your parents? Like, how did you work through that? Did you get a feeling of, wait a minute, he's getting all the attention and I'm not? Was that true for any of you in any way?

SPEAKER_06 19:14

I I can go first on that. And the answer is yes. Um, even though I was an adult, um, you know, sometimes felt like if I I'd go home um, you know, for Christmas or like you know, some some special time, and you know, he'd be in crisis and like everything would change because of his presence. So yeah, that's not necessarily the most mature answer, but it's the honest answer.

SPEAKER_07 19:37

I respect that. For me, it was the opposite. I never felt like any resentment or anything. I just wanted to help. And I mean, I don't think that is a better answer or anything. I just, you know, we each experienced it differently. But for me, I think it was very much just like we need to help him. And that's about it. Like that, it was just as basic as that for me, my experience.

SPEAKER_02 20:05

Maybe some of that is um, you know, you were there all along, and so you were in the helping mode, and Angela was coming home, yeah, wanting to be, you know, honored as the daughter coming home that we hadn't seen forever. And you know, I think the perspective of older sibling versus younger sibling who's looking up to her brother, you know, a younger brother is always kind of a nuisance, maybe compared to an older brother.

SPEAKER_05 20:33

I could totally yeah, I can I could that makes a lot of sense, I think. Um for sure. My my feelings about that were I don't think I felt resentful, and I think that that was mostly due to the fact that I didn't really want my mom's attention on me at that point in my life, to be honest with you. Like I was like, she's busy. My mom was always busy, and I and I and I loved that, and I was busy, and I that sounds sounds horrible, but um I don't think I like I said, I I think that just I don't think I think for for me, I don't think my mom, my mom was always there for me when I needed her. So I think that that for me that was the big thing. Like I didn't feel like any time that she should have been paying attention to me really went to my brother. So I think that I didn't feel um, you know, any lack because the amount of time I wanted or needed from my mom, you know, at that age where it wasn't a lot, um, she was providing for me. So that that was my experience of it.

SPEAKER_03 21:49

All right, thank you. That's so interesting to to ask you that in this capacity. It's funny because my recollection and the way I tell your story, Allie, is That when you entered high school, your brother had pretty much just dropped out. You were three grades apart. There was a lot of tension in the house because he was not following the rules. And I remember when I sent him away to a troubled teen program out west, a great deal of relaxation in our household because it was just you and me. And maybe that was too much attention for you, but I felt that I was giving you a gift and giving us a gift to be able to be just the two of us and have him work through because he was doing drugs at the time and I did not know it was schizophrenia. I just remember finding the money to send him away for him, for me, and for you. So that is part of what we went through. But those those are great answers. Thank you. Let's just bring it to the present day. Maybe it's the same answer, but you know, is there well I know Allie, you said to me, I've traded in a big brother for a little brother. I do remember that. But beyond that, is there any what is hardest for you right now about your your brother's illness now, nowadays, with you as an adult?

SPEAKER_05 23:18

I'll go first because you just kind of spoke to me. The hardest thing for me right now, it's just my worrying about him. That is what it is most of the time. Uh feeling sorry for for him, worrying that he feels sorry for himself, um, worrying that he feels ashamed or compares himself to other people. And I'm always worried, worried about how he might be treated. I know people are gonna think what they're gonna think about people. That's just life and that's just the world. Um, but I think that I don't ever want him to be mistreated. Uh, and I want him to be able to achieve his goals, whatever they may be, at whatever time, depending on whatever med he might be on or might not be on. Um his general I think I the biggest thing for me overall is like I worry about him being his happiest and best version of the person that he is now. Um, and I just my overarching feeling is worry.

SPEAKER_03 24:28

Okay. That sounded like the end of the sentence. I think it was.

SPEAKER_01 24:32

It was the end of the sentence.

SPEAKER_03 24:33

Okay.

SPEAKER_01 24:34

Lucy, I'd be really interested to hear your answer to this question.

SPEAKER_07 24:39

Can you re can you repeat the question just so I make sure I answer it correctly?

SPEAKER_03 24:43

It it's what what's hardest for you right now in present day about your brother's illness.

SPEAKER_07 24:49

Okay. The hardest thing for me when I think about him is I just I worry that he's lonely and that he is isolated. And I know he's with my parents, and my mom gets to see him often, and he's very, very fortunate that he has caretakers that see him on a daily basis, and he's able to develop relationships with them. But I know he's lonely, and that hurts me like deep down, just knowing that he doesn't have anyone that he can just casually see, and I just uh I worry that he's just gonna be lonely for his whole life, and that's hard because he's so far away, and um some of the things Ali said too, like I I relate very much so, but yeah, I think my most strong worry is just that he's lonely and that he is gonna be lonely for a long time.

SPEAKER_02 26:00

And uh Angela kind of answered that already, so you can answer it if you want, but the other two talked about already how their friends feel about their brother and that they looked up to them and then later was like, oh, that's your brother. And so that would be my question to you. How do your friends uh feel about Jim and how do they support you?

SPEAKER_06 26:22

Um, well, answering the first question first, the the present worries, I would say safety, um, both for my brother. He's not presently in crisis, which is good, but when he is, you know, safety to himself, but also harm he may cause others. He's caused car accidents, plural, in the past, um, when he's been psychotic. Um, so you know, what if something really bad happens with something like that? He's very big. Um uh so you know, I worry about what he might do to himself, but also obviously with um, you know, police shootings, that that sort of thing. Like those are the kinds of things that um that cross my mind presently, as well as the safety of my parents because he spends a lot of time with them. Um, as far as my friends, um, I mean, when he first got sick, it wasn't really a thing just because my friends were all gone, also, you know, everybody had left for college and so forth. Um, so I guess my friends would be in segments of people that I knew growing up who knew Jim or know Jim. Um, and then, you know, friends that I've made in college and beyond who didn't know him. They just know me. So it's certainly been interesting since my mother's book came out last fall. More friends have reached out and said, you know, things like, I'm sorry I didn't ask over the years, like, you know, that that sort of thing that you would do if you had a family member of a friend with cancer or, you know, something of physical illness. And people realize that over the years they hadn't necessarily asked, although some have, but but certainly the majority, you know, had not over the years with a brother with mental illness. So that's been an interesting response from my friends in recent times since they read the book.

SPEAKER_01 28:07

Yeah, I'm I'm interested from everybody is has your life changed in any positive ways because of your brother? You know, I spend a lot of time, you know, a lot of it is just pep talking myself, but trying to see all the ways I'm a better person, and and you know, this is better and that's better, in not really because maybe in spite, but I'd be curious how you girls feel about that is if your life has changed in any positive way. Yeah, the silence.

SPEAKER_05 28:46

I will go first, I suppose. Um, yeah, okay. So I'm very much like a look on the bright side type of person, anyway. So this is, I guess, easy for me to answer, just because I think it's helped me to have a better understanding of any kind of mental illness, have sympathy for people. It's helped me to have an automatic interest in psychology and all things related. Um give people the benefit of the doubt when it comes to their actions and behaviors and understanding that you never really know what somebody's experiencing. Um, so I think it's made me a better person and a stronger person and more understanding person um than I would have been before, I suppose.

SPEAKER_07 29:41

It's interesting for me to hear you answer that, because that's pretty much verbatim what I would say to you, honestly. But yeah, it then also makes me wonder. I've never thought about it in that way, that maybe my brother getting sick is what assisted me to be that way, or if I just always was that way, or maybe like a little bit of both, because I'm very much the same way where I always am giving people the benefit of the doubt. If I see someone, and you know, I'm more educated now because of self-education and my mother and just experience and seeing my brother, and just noticing certain things about people and thinking, okay, well, you know, there could be something more deep down off in this person's life than what is on the surface level. And I also think that a lot of people don't understand very much about mental illness, and so it's easy to just say, oh, that person is, you know, insert whatever word you want to use. But for me, it's always like, let's have compassion for that person because we don't know what's going on. There could be something more deep-rooted that you don't even know, and so then at that point, in a positive way, from my experiences, I try to share that with people and say, you know, maybe there's just some stuff you don't know, or like I try to just shed some light about mental illness if I can, you know, if it's like the right circumstance or whatever. So I'd say that's pretty positive.

SPEAKER_06 31:27

Yeah, in the same vein, um, definitely the like the internal perspective part that Ellie and Lucy both said, I would echo that. Um, I would say also um it's made me a better boss. Um, you know, there's people on my team that have struggled with mental health issues. Um, I certainly am in a place to understand that more than most people would be. Um, I would also say that um because our family has always chosen to be very, very open about Jim's illness, and my mom was an elected official for the first decade or so or more, maybe after he got sick. Um, so she was in a place, you know, to speak publicly. Um, I'm a journalist. I've certainly, you know, been had opportunities to either speak publicly or interview other people publicly in ways that have been informed by my experience with my brother. Um, and then in private, if if you know a friend or um somebody else has a family member with a serious mental illness, I can, you know, sometimes I don't have all the answers, but you know, I can sometimes guide from my experience.

SPEAKER_03 32:34

Thank you so much.

SPEAKER_02 32:35

And third here, that um one thing that's a pet peeve of mine that I can't do much about, but Angela can because she's an editor, and I hate it when someone says, I'm schizophrenic about something.

SPEAKER_07 32:48

And me too.

SPEAKER_02 32:51

And so I found something in a political story um sometime in the last few months, and I just could text Angela and she got it out of there right away.

SPEAKER_07 33:01

So that's amazing. Yeah, that's one of my biggest pet peeves as well.

SPEAKER_03 33:06

I actually once wrote a letter to the editor on that, and I was corrected because it is a secondary definition in Merriam-Webster that schizophrenic can also mean can't make up your mind. But still, I think there's too much stigma and they should stop using it that way. So I totally agree with you guys.

SPEAKER_06 33:25

I would guess you might get a different response in 2021 with you know so much change in language.

SPEAKER_03 33:30

Yeah, that that that could be language changes all the time. The next three questions you guys have kind of already answered, and you may be sort of a select group because you are clearly three siblings who've each found a way to come to grips with your brother's illness so far. I know that other people may not be, and I just chalk it up to great mothering that you all have. Um, no, it's it's you, it's you and how you've chosen to deal with it. But there may be other people who have these other feelings, but I'm not going to ask you these questions because you've already answered them. I just want to put the questions out there. So, of any any other siblings that are listening, know that you're not alone if you had these feelings. So, somebody named Cindy Grossman on Facebook wanted to know do you feel cheated that your mom spends more time with your sick sibling? But I think you guys have already covered that. Uh, do you feel guilty that he got sick instead of you? That comes from Laura Pogliano. Do you guys feel you've already answered that, or is there any survivor's guilt for any of you? Angela's shaking her head, and I'm hearing silence. So I'll let that marinate for a second. Here's a big one, I think, um, because it looks a little bit into the future. And this comes from Kathy Burchette, who wants to know do you ever fear that you or your children could also become schizophrenic at any given time because you have a brother with the illness?

SPEAKER_06 35:04

I'll take that one first. Um, not really for me. I'm I'm 45, so yeah, statistics are on my side um at this age. But um, but like I said, I do have a teenage daughter. Um, and obviously there is a hereditary component. So I would say it's probably actually affected my mom's behavior more than mine. Um, and she can speak to that. But she uh she's started lecturing, not lecturing, that's that sounds bad, but teaching, educating, teaching my daughter from a very young age about the extra influence of street drugs, given her potential propensity to have schizophrenia. Um so my daughter has um, you know, she she's like written school assignments on the dangers of marijuana for someone who may be inclined to develop a serious mental illness, that kind of thing. So Mindy's beaming. She's like, yeah, it's my granddaughter.

SPEAKER_07 36:03

Allie, Lucy. Um I mean, I definitely have that fear that one day when I have children that they could develop mental illness. It's, you know, for the hereditary reasons, it's in our bloodline. And I do think about that often. I know that my other sister, my younger sister also thinks about that. Um, we've talked about it before, which is hard, but I think that um, you know, we're we're lucky enough that we have the knowledge that if that were to happen, we would maybe have a deeper understanding of how to approach the situation, not from the like not as such a mysterious thing, but having more experience and thinking, okay, maybe this kid is struggling deep down and not just like trying to use drugs and you know misbehave or like act out or whatever. So it's sort of too, you know, it's like a seesaw or something. Like, of course, it's a fear, but also I think that if it were to occur in my future, I would at least be prepared.

SPEAKER_05 37:22

Um, yes, I agree with actually what what oof Lucy and Angela said. It is ingrained in my mind when I was taking abnormal psychology, the graph in the textbook in college, when it said, if you have a sibling with a mental illness, your kids have will have a 13% chance of getting it. And that like stuck in my mind. This is back in like 2005. So I've always thought about it. I like I like Angela said, I feel like I'm, you know, 36. So like I think I'm cool, but um, I do definitely think about that for my children, especially because I actually don't really know about my my father's like family history either. So there's like so much unknown for me personally, like we don't know about my dad's lineage, and so you know, it's a lot of people.

SPEAKER_03 38:14

My dad was adopted um in England, and we have no idea our heart lineage, just one uncle we found, but so the lineage is unknown, just so you know.

SPEAKER_05 38:24

Yes, so that's that's my story, but um, I just definitely worry about it with my kids, and also for myself, um, I'm like hyper aware of myself, like psychologically speaking. So I'm like always, you know, I'm I'm I'm just like always on guard with myself. Like, are you okay or is everything cool? Like, do we need to like, you know, call somebody? Like, just you know, I'm always checking myself, um, generally anyway, just because I want to make sure I'm like in tip top shape, just because I've been through hard times of my own. And um, you know, when I was pregnant and I was like, okay, I'm probably gonna get postpart. I'm like, I'm gonna be fine, I'm gonna deal with it right away. And like luckily for me, I it didn't happen, but I was convinced it it would. Um, and so anyway, like you like Lucy was saying, I um with my kids, I uh I think about it with them. And I think that if and when they're going through difficult times, I will definitely let my mind go there just to even if just to rule it out. But I um I definitely worry.

SPEAKER_04 39:31

Thank you.

SPEAKER_02 39:32

The next section all came from Angela. So um I don't know how old you are, Lucy. Angela said she's 45, Allie said 36. But the the older you get, the more the you start worrying about the future with your brother because I am 73. So Angela has to think, you know, what about when I'm not around, when my husband's not around, and then she, we already have her be the um the person that's number two on Jim's trust and on his um advanced psychiatric directive. She's the fallback after we parents. And um, so um I'm I'm gonna be curious to know what Allie and Lucy, how much worry you've done yet about the future when your parents aren't around. But I'll just ask the first one to Angela since it is her question. What are your major worries about when we parents aren't around to be the frontline advocates for your brother?

SPEAKER_06 40:29

Yeah, my my worry is about you know how independent he can be and how much he can be set up now to be independent, realizing he can't be independent, like fully, fully understand that's not possible, but um I would like him to have you know as many external supports as possible earlier rather than like in a moment of crisis. Um, I'm yeah, I don't, I who who knows what the future holds, but you know, I don't have plans to live where he lives. And I think he'd be better off staying where he is than moving to where I live because the mental health system in Minnesota is better than in many places, and certainly better than where I am. Yeah, nothing, no mental health system is great, but it's it's less bad there than in um in many other places. So what I worry about is a lot of the day-to-day stuff. You know, I can I can manage bigger things from afar, but you know, I can't keep him company. I think it was Lucy that talked about worrying about her brother being lonely. You know, I can't, I can't provide that sort of daily support that he needs. And I know it's hard to get those sorts of things in place from from other sources. There's really no no substitute for having a family member who's physically nearby.

SPEAKER_07 41:47

I would say that I don't really worry about his future because I know that he'll be fine. I'll take care of him. I'm prepared to, you know, one day when I I'm 32, by the way. So, you know, one day when I have a home, or I know that my sister Rose has also mentioned, you know, having space for him. I think that between the two of us and our other sister as well, I think that we would figure it out. I'm not too worried. I know it'll be hard, obviously. No one wants to think about their parents being gone, but I would be fully prepared to just take it on and be okay with that. Because honestly, I think he'd be happier being nearby his sisters than being separated from us.

SPEAKER_05 42:42

Um yeah, I definitely uh my mom and I talk about it all the time. My mom is very much into the whole, I don't want you to worry because I have this planned out and this planned out and this planned out and this arranged, but I still, of course, do because I know that I will be and need to be and would want to be the one that is gonna be the family, you know, my husband and I will be the family for him to make sure everything's you know going okay. I don't know what his situation is going to be like at that point exactly. So it's hard to know. That's what I think the hardest part for me is not knowing exactly what it the future will look like. You know, what of course nobody ever knows that, but you know, where is he gonna be? What kind is he gonna be in a group home? Is he gonna be who knows? So I find it hard because I can't, I like to plan when I can and I and I can't picture what it's gonna look like. So do I look forward to that? No, but of course I will do it because I love him.

SPEAKER_03 43:48

And I think I answered the question. Thank you. You know, you know what runs through my mind. I'm sure you've all seen the movie Love Actually. So Laura Lenny's character who cannot move. What terrifies me is her situation like I just wanted to scream at her, don't pick up the phone. Your brother's safe in a mental institution. Go out with the cute guy. Like, none of us ever wants our daughters' lives to be subsumed by their brother's illness. And so I think each of us, now obviously, we're three very dedicated and educated moms doing our best, as are many of the warriors out there. We don't ever want you to not have a life because of your brother, but each of you clearly love your brother. And that that does my heart a lot of good. For anyone listening who isn't quite there yet, I just want to read so that you know these feelings are normal. And Angela and Lucy and Allie mentioned all of them. But in family to family, there is a class where we allow the siblings to kind of make a list of what they call subjective and objective burdens, things that are hard for them. And just FYI, some of the things on the list that groups have come up with are common life challenges for a sibling, is for some coping with the disproportionate amount of attention being given to the sibling, or for some growing up in an atmosphere of secrecy or confusion, silence or shame. Some have witnessed frightening symptoms. Ali, I know there was a time you drove up and Ben was being led into the ambulance in handcuffs, and that was very hard for you. And you may have blocked that out, but that was there. And these are things, sibling experiences that get shared. To see a loved one have a psychotic episode is not fun. Seeing personality changes. Some siblings are, you know, I think you all have very gentle brothers, very sweet, gentle brothers. Other siblings don't have that. They might feel threatened or frightened or emotionally hurt by someone.

SPEAKER_02 45:55

I have to interject here because that that is not the case with Jim. He's uh totally sweet when he's not using illicit drugs and when he is taking his antipsychotics. But um, it's quite the reverse. We've Angela has, I don't know about Lucy and Allie, but Angela has been emotionally verbally abused by her brother. And um so have we parents when he's not doing well, when he thinks that I'm a monster and he had delusions needing to kill me because he thought I wasn't his real mother. So Angela has feared, she's kind of touched on it, but she's been light on it, feared for her parents' uh lives at the hands of her brother when he was using um serious illicit drugs and when he was um not taking antipsychotics. So I think that colors how you felt about your family member. Maybe Angela talk about it a little more, but I just wanted to, in case any listeners think we've all had it, please sweet sons. We I do have a sweet son now, but that's because he's on clozepine.

SPEAKER_03 47:06

Angela, did your mom pretty much say it, or you want to add something to that?

SPEAKER_06 47:10

No, I think she did. Um, yeah, my my daughter has also seen him, maybe not at his worst, but not good. So that that was definitely hard. And at least at that time she was old enough to have an understanding. I think that would have been, you know, really hard if it was maybe like the age of that Ellie's kids are now, or you know, children who are old enough to know their uncle, but yet not understand what's going on. But yeah, that's um that's definitely been a challenging part of the relationship.

SPEAKER_03 47:37

So these are common things, and thank you for sharing that. It makes it realer when it comes from you. Go ahead, Mimi. What I see Lucy's hand is up. Lucy, I see your hand too. Thank you.

SPEAKER_07 47:48

Yeah, I just wanted to add on to that a bit too. You know, we're very lucky that Nick also has been, for the most part, as you said, gentle. And but there have been rough times, you know, there were a lot of rough times in the beginning where he was having psychotic episodes, and you know, he was convinced that our father wasn't his real father, and he had very intense delusions, and there were a lot of fights at home. And I mean, you know, we dealt with them and we're we got through them, but there were definitely hard times when it was hard to detain him, or my parents had to ban him from our house because it was just too much, and you know, I was 15 and luckily, you know, old but beyond my years, or whatever the expression is. But you know, my younger sister was 11, she was still a little girl, and I think she has some more traumatic memories of that experience. So, like I said, we're very lucky that he's in a very stable, the most stable he's ever been now, but there definitely were rough times. So it was very much like a roller coaster in the beginning, especially.

SPEAKER_03 49:14

Okay. Allie is not unmuting, so I think I'm unmuting.

SPEAKER_05 49:20

I'm trying to remember exactly what the question was, though. Like I'm hearing everyone's experiences and I'm not sure.

SPEAKER_03 49:25

No, I I was actually just I was actually just reading a list of of common feelings among siblings because you guys are in are in a place of uh there's there's a graph of emotions that we use in NAMI about you know, starting out with crisis and leading to advocacy, and somewhere in the middle is of is acceptance. And you know, I think all six of us here are generally at a place of acceptance uh and leading to advocacy for our loved one. But anytime like and it's no secret on this podcast, um, our Ben went back in the hospital after nine years of success. He went back in the hospital because COVID took his job and everything crumbled. And that wasn't fun, that was scary. And we try to shield Ali, we try to shield your children from ever seeing him like that, which we can do now because he's in a group home. When he was living with us, that was a little harder. And I they're not ready for it. So they just want to see good Uncle Ben. So that you know, that's what we do. And right now it doesn't work to have him with us. So so the question was we were just going through some of the feelings of ever feeling frightened or bearing the social stigma of having a loved one who's viewed as strange or scary or different, that you don't have to own up to any of those feelings, but just I wanted to put them out there in case any listeners are feeling those things and feeling feeling like it's not normal.

SPEAKER_05 50:50

So um, I definitely have felt all of those things at various times. I do remember when the scariest weird time when his symptoms were like freaky, when I did come home and the ambulance was there, and I feel like that might have happened twice, but at least I definitely remember that. And I remember talking to him in the bathroom once and then trying to like level with him when it was like his. I don't know if it was his first big psychotic break. Mom, you would know more, but to me that was the worst I'd ever seen him. And I just remember I was in the bathroom talking to him, and I was like, his he was scared, he was crying, he was just scared of his himself and not sure what was going on. And I will always remember that.

SPEAKER_03 51:38

Um, I do remember that you were the one who calmed him down because he had called the police on me and I had called the police on him. Yeah, that's in the book. That's that was not a fun moment, but you were the loving force that brought him back to us enough so that he could talk comedy to the police.

SPEAKER_01 51:55

But you know, and I think that one of the things we need to acknowledge, and especially on this podcast, to other people who are listening, siblings especially, is this is tremendous trauma that these siblings go through. And it's the the ramifications and the reverberations for that are things that they have to deal with the rest of their lives. And unfortunately, during the time when we're going through the worst of it, we as moms, you know, you have one kid on fire, so that's where your attention goes. So the other kids are experiencing the trauma so acutely, and there's just not enough of us to go around to have any sort of palliative effect on those kids. And so these siblings, they I mean, all the all our girls, they're beautiful, they're wonderful, they have good lives, they're good people, but it's a trauma that they carry, and I think that we need to acknowledge it and we need to see it, and we need to make a place for it, and we need to make sure that other siblings who maybe don't have parents as engaged or as whatever as we are, understand that you know what, if your mom doesn't see it, I see it. Randy sees it, Mindy sees it, we get it. This is trauma that you have been through too, and you have a right to process it and deal with it and be taken care of too.

SPEAKER_02 53:28

I tell Jim now that he's doing well and he's on clozepine, unlike Lucy and Allie, Jim only has one sister. So I tell him, um, you know, you better be as nice as you can be to her, because if she decides to give up on you or doesn't want to be your trustee anymore, then um you're gonna have to pay a heck of a lot of money to the bank for those same services and they won't be as personal and loving. And um, so I try to educate him too on um treating his sister right because you're right, Mimi. I'm sure all of our children have huge PTSD, as we do from uh when our children, when our six sons were were not doing well.

SPEAKER_03 54:16

And and bringing it back to the positive, because we're we're at an hour, and I think that that's pretty much our our limit for our half hour show is an hour. But you you women who are all amazing. From what I can hear and see, you Angela and Lucy and Allie, you've grown from it. You've you are certainly great examples of coming to grips, and you're amazing women. And I'm just so proud to know all three of you. And I and I thank you so much for sharing your stories. Got a little raw toward the end, but I I think that was important as well. I don't have any final words. I would like the three daughters to have any final words that you would want to say, anything that you haven't said that you would like people to know about the experience as a sibling of someone with schizophrenia, or how we can best help you or understand you. Any just final sentence you'd like to say?

SPEAKER_06 55:17

I guess I would say it would be great. Obviously, you mentioned the NAMI family-to-family classes, which are wonderful for all sorts of family members. Um, but it seems like there's very few, at least official networks that exist for siblings. Um and you know, to obviously there's lots of people that go through this exact same thing, but it can be hard to find others with the same shared experience. So that that's certainly a need that is still unfulfilled.

SPEAKER_04 55:46

Thank you, Allie or Lucy.

SPEAKER_07 55:49

I would just say to any listeners that feel alone, hopefully the fact that we're talking about this and putting our words out there, and it'll help other people to know that they're not as alone as they think that they are. And hopefully we'll encourage the continuation of talking about mental illness and mental health and ending the stigma and hopefully just bridging that gap that we can't talk about it because it's not supposed to be talked about, that we should keep talking about it and that it's important. And I just don't want anyone else to ever feel alone or that they can't get help. And like Angela said, like it would be great if more you know, family-to-family, sibling to sibling kind of things maybe came out because I think that's very important.

SPEAKER_04 56:46

Okay, thank you.

SPEAKER_03 56:48

Allie, you get the last word.

SPEAKER_05 56:50

I don't know that I have anything else to add. Those were they pretty much summed up all the things I'd like to say. I mean, I'm all about hoping to continue the conversation for everybody and anybody that's involved, even people that just want information, even if they don't have family members, you know, experiencing this. I, you know, love to see all the positive things that I'm seeing in the world of people being open about about things that were once not things that people were open about, and and this being one of them. So I just hope that this brings people some either information or comfort in knowing that people are willing to speak about their experiences, like we do.

SPEAKER_03 57:37

All right, thank you. Well, girls, your moms love you very much, but you knew that.

SPEAKER_02 57:43

I just think we should take that suggestion from all three of these and send it to Nami. They they do have programs for siblings, you know, for little kids and young kids, but not for adults. And I think that's a huge need. So thank you all. I think you I wish I could mush these siblings that we have right here tonight together so they could um network like we do. Yeah, maybe they'd be great.

SPEAKER_03 58:07

All right. Well, this has been episode 19, I think. My brother or sister has schizophrenia. What about me? Thank you so much for joining us, and we hope to see you soon. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at Miriamfeldman.com, mindygryling.com, or randyk.com,