More of What Families Want Therapists to Know About Schizophrenia (Part 2 with Leah Brennan, LMFT, CADC) -Episode 63

Leah Brennan. a Licensed Marriage and Family Therapist and a Certified Alcohol and Other Drug Counselor, joined us with her own questions in Episode 55 so as to improve therapist-family communication. 

Her Episode  had such a great response that listeners asked for more - so here it is!

Leah got connected to 3 Moms In the Trenches through her clients. Over the past five years, she has had four different parents on her caseload who were all confronting the reality that their sons met the criteria for a diagnosis of schizophrenia.

Leah realized that despite her excellent training, she was not adequately equipped to help these parents navigate the challenges they were facing. 

Today Leah asks the questions she didn't get to include in the last episode that all center around the theme: "What Do Parents/Families Wish Their Therapist Knew About Schizophrenia?"

The discussion includes:

• Marijuana and Schizophrenia - what do we now know? What do families need to know.
• Can needs to be done about HIPAA?
• How can we better approach families with a possible early diagnosis, and why?
• What about recent moves to legislate involuntary intervention?
• Who should therapists alert and educate in the larger communities BEFORE kids reach the age when symptoms of SMI typically start to manifest?

Links:
Leah Brennan:

https://www.leahbrennantherapy.com/

mentioned in show:
Hope for Troubled Minds Project.
WHO: Those with brain illnesses or other mental health conditions and their loved ones.

WHAT: Submit a 1,000 word or less letter expressing gratitude for your loved one or the one you care for in spite of the circumstances.

WHY: Letters can promote a healing journey and also serve for advocacy as we humanize the issue of brain illness.

WHERE: Email it, along with a photo or image and an (optional) brief bio to me at: tony@delightindisorder.org .

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_03 0:00

But I would say to your listeners, if you're going through this, to go ahead and and if if there's a treatment provider or a psychiatrist or wait when you're in a situation where you're feeling like Mindy where they don't even know what I look like, to go ahead and say, I would like to just tell you about my loved one. I would like to send you a picture. I would like to send you an email. Um, I would like to human because the other thing that's not happening, I think, is we're not humanizing people here.

SPEAKER_04 0:26

Back by Popular Listener Demand, Leah Brennan is a licensed marriage and family therapist and certified alcohol and other drug counselor. And she joins us tonight for part two of one of our most popular episodes where she asks the three moms about what life is like living with someone with schizophrenia in the family. We'll talk about HIPAA, we'll talk about early detection, and a whole lot more. Welcome. 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 Feltman, Mindy Gryling, and Randy Kay. This is episode 63. It's a part two of an episode 55 that was so popular, people kept saying, When is your guest coming back? So we will be talking again with Leah Brennan, LMFT C A D C more about what families want therapists to know about schizophrenia. So we're going to turn the tables again, and Leah Brennan will ask us questions. We're down one mom tonight, Mimi, who is always traveling, finally got stuck with an airport delay and couldn't make the podcast. So it's two moms in the trenches and one therapist in the trenches tonight. So hi, Mindy. I understand you had a book event this week.

SPEAKER_02 1:54

Tell us about it. Yes, it was a very exciting book event because it was like 150 some people, and I got to sign real books, which of course is us for a treat for all of us with our COVID rollouts. But the part that was really um unusual was they made, and for the people watching on YouTube, I'm gonna show they made uh mugs with my book cover on it, which I thought was really cool. So and I and they sent me home with a set of eight. So now I have everybody can come to my house and have coffee with fix what you can mugs. So it was a treat. And did you say 150 people showed up? It was a huge event. It was um uh a lot of groups sponsored it. It was the main host was AEUW, but they networked with many organizations, NAMI in their area, and um and other other groups, friends of the library, the library, they had about eight or 10 uh co-sponsors. So they really, and it was a greater Minnesota. You know how there's more people that come when you're out in greater Minnesota, you know, when you're out of the metro area. So there's many um other choices, plus they had really good marketing. They had me on the radio ahead of time, they'd had posters all over town. It was, and then after I spoke about my book and our family's experience, then they had a panel of six local mental health experts, including their uh Wilmer, Minnesota Leah Brennan, and they had um uh answers for people who wanted to know locally how could they get services. And I have to say, every single provider had a waiting list and not a short one.

SPEAKER_04 3:45

Yes, I I have no doubt. So if this is your first episode with us, that was Mindy Gryling. And as you heard, her book is Fix What You Can, which came out in 2020, right? Yes. Launching a book during COVID, always fun. So you can stretch out the book launches. You know, all of us are available for events like this. Um, our absent Mimi Feldman, her book is He Came In With It, which also came out in 2020. I'm Randy Kay, and my book is Ben Behind His Voices. That came out in 2011, but an updated version came out in audiobook only last year. So we love to come out and meet the public and either all three of us together or any combination. Mindy lives, I'll just say in the Midwest. So you, but it's Minnesota, and Mimi travels all over anyway, but she's basically on the West Coast and I'm on the East Coast. And we love to meet you and share our stories, and those are our books. So that's awesome. I'm so glad you had it finally the book lunch you should have had three years ago. That has been fantastic. So when I see you, I want a mug.

SPEAKER_02 4:57

Yes, yes. Okay. Each other. We've never actually met in person. I've never seen Mimi or Randy in person.

SPEAKER_04 5:06

Nope, not yet. Mimi and I met briefly at a barbecue at Dr. Laytan's, and we'll we'll fix that one of these days. But I still feel like you're a dear friend. So you have to be hug when we meet in person. That's for sure. I want to welcome back uh a guest that was on, it seems like not that long ago, but since these days we're only doing two a month, it it was a bit. So it was episode 55. And if you're watching on YouTube, you can already see Leah. So Leah wave. But uh Leah is a licensed marriage and family therapist and a certified alcohol and other drug counselor. And the last episode we did where she wanted to turn the tables and ask us questions, had such a great response that on our Facebook page, which you're welcome to join by the way, and our new Instagram account at uh Schizophrenia Three Moms um trenches, just search Schizophrenia Three Mom Trenches and you'll find it. People were going, well, where's part two? Because the last thing we said was we have to have you back. So by popular demand, Leah is back. She got connected to us through her clients and realized that she wanted to know more from us who are not clients of hers about how to help her clients. She got a lot of questions. So, Leah, I just want to start by welcoming you back. Thank you. And what was your experience with us on episode 55? Did you get a reaction? Did you learn something? Like what stands out for you?

SPEAKER_03 6:38

I, oh my gosh. I I thought it was one of the best hours of my life. I mean, I just had so much. I I was very um, it was very thought-provoking, very stimulating. And I thought very um, I felt very lucky to have gotten to be connected to the three of you. And I'm I'm bummed that Mindy's or Mimi is not here tonight. But it was such an elucidating educational hour, hour and a half for me, however long that lasted. And I'm thrilled to be asked back. Um it was it was exactly what I what personally I wanted. And I just because, like I said at the last in our last meeting, um, I realized how much I don't know and how much I I feel ethically obligated to to expand that knowledge because this is showing up in my caseload and it's showing up in my you know therapist that I work with in consultation, it's showing up on their caseload. And as I look back over the course of my career so far, I'm just realizing, wow, there was just such a kind of a gap in my education. So you the time we spent together helped me start to fill that gap. And I feel like I've done a lot of my own reading and research since then, and I just feel like there's even more I don't know.

SPEAKER_04 7:52

Um I applaud your interest and wanting to continue to learn.

SPEAKER_03 7:58

Well, and I've listened, you know, I keep listening to the podcast. So I I listened to the most recent one where you guys had all the list the the the other moms on.

SPEAKER_04 8:07

Um, the stories, the stories from the listeners. We're doing another one of those in July, I think.

SPEAKER_03 8:13

So I was so moved. I was so moved, and I I felt I had to pause it a few times just to kind of re-re-calibrate and kind of recover. It just was so heartbreaking, but also, you know, inspiring the resiliency and and the tenacity and the love that these people have for their kids and and that you guys have for them. And it's truly, truly inspirational what you guys are doing here. Really. Yeah.

SPEAKER_04 8:41

Thank you so much. We we keep hearing from people, and there is another project, and I will put it in the show notes because I have nothing in front of me except your three, you know, our our our three faces. Uh, there is a project where I have written a letter to my son, and he has asked people to write letters to their loved ones with serious mental illness, and it's going to be published. It's coming out, I think Kathy Day is going to endorse it. And so the piece that I wrote for this book is locally for Mental Health Awareness Month, they're going to be doing a play reading, and people have written pieces about mental illness. So they accepted my piece. My first thing is a playwright. I'm not acting it out. I just wrote a little play. So, you know, awareness continues, and we want to continue doing the work we're doing so that people like you can do the good work that you're doing. So thank you. So let's dive in. What would you like to know from Mindy and Randy?

SPEAKER_03 9:47

Okay. Well, as you guys know, I thought there's so much. I have I still have a lot of questions. And but the thing that's been on my mind the most, I mean, I know we talked a lot about HIPAA last time, and and I've done a lot of kind of my own, went back and kind of recovered what I learned in HIPAA, talked to other clinicians about what they have learned and what they've come to believe, um, and just kind of what we think we know. And 201, everybody was just, you know, everybody who who was kind of raised in family systems therapy, like I was, where we think about, even if there's just one person in front of us in the in the clinical room, we think about the entire family and how how dynamics are at interplay and they intersect and they bounce back and forth among the family members. All of us still remember and are very grounded in the idea of no, we want to talk to the family members or we want to hear from them at least. If it's HIPAA protected or we're feeling like um we can't share the content of the um sessions with them, we can at least ask them, tell me what you're seeing. Tell me what you're thinking about, tell me what I don't know that you can tell me that'll help me treat your loved one. We are all thinking that way. But the thing that struck me the most was everybody, you could, I could we we all talked about it, acknowledge we feel this tiptoe around HIPAA. So somewhere along the line, it has gotten really ingrained. You don't mess with that, you don't push on it, you you don't challenge it. And that to me is where I'm kind of mainly sitting because I really heard loud and clear from you guys and some of the other episodes. Not just the one that I was on with you, um, where I was on last time, but the other episodes about HIPAA, how problematic that is.

SPEAKER_04 11:34

Because people are, I believe, more careful than they need to be.

unknown 11:40

Right.

SPEAKER_02 11:41

And so there's something I think HIPAA is just probably the most hurtful thing that there is when you're dealing with someone you love, and the people who are trying to help them are not talking to you. I think I may have said on our last episode, our son has had many uh therapists, and not a one has ever spoken a word other than possibly hello. And most I never, I don't even know what they look like. There was no reaching out. Um, and that's the case with many providers. I think therapists probably have the hardest road to hoe because of the nature of your relationship. But the psychiatrists, the nurses, you know, everybody, the idea that this is your son and he's very, very sick. And then no one will talk to you. It's just an added layer of grief.

SPEAKER_03 12:31

An added layer of grief, and and it's it's um such a a wealth of information that that we're missing out on when we don't actually just say, just talk to me. You know, because there's no HIPAA violation there. When I when a clinician says to a loved one or a family member, you tell me what you're thinking and seeing. I've got 15 minutes, I won't charge you, or even if I wanted to charge you, I could say, let's work it out. Um, but I really do feel like I'm missing a lot of information. I think you have a lot of the stuff I'm missing. Please fill in the puzzle pieces.

SPEAKER_04 13:03

So I love that. So what's the solution? Is it is it just educating practitioners about what HIPAA actually is and what they can do? Is it educating families as to what they can offer? Is it both of those? Do we need to legislate in any way? Or are the laws on the books and it's just people don't understand? What's the solution here? How can we spread more awareness that HIPAA may not be what you think it is?

SPEAKER_03 13:33

I think talking like you, I think it's both. Talking to clinicians, I mean, on my end, what I want to have been and what I will continue and want to continue doing is talking to the clinicians that I know connections to training facilities to say, hey, if if I'm ever, you know, available to come and you know do a do a talk for one of the lectures to say, here's here's how to get out of the program and here's how to go into private practice, or here's how to go into you know career advisement kind of stuff, that would be an opportunity to bring it up and talk about it. Um, but I would say to the your listeners, if you're going through this, to go ahead and if if there's a treatment provider or a psychiatrist or wait, when you're in a situation where you're feeling like Mindy where they don't even know what I look like, to go ahead and say, I would like to just tell you about my loved one. I would like to send you a picture, I would like to send you an email. Um, I would like to human because the other thing that's not happening, I think, is we're not humanizing people here. This is a person in my room, they have a mom and a dad, or they have parents, they have caregivers, they have maybe they have siblings, maybe they have nieces and nephews. Let's humanize you. Let's let's really dive in and get to know the richness of your life besides you just being symptomatic. Um, and also let's how how do you kind of connect to all of that? Maybe you're in a psychotic episode, but don't you don't can't we talk about the vacation you took when you were 12? I heard about it from your mom. Is that okay? Right.

SPEAKER_04 15:02

Yeah, humanizing is, and I know it's difficult when it's you know a shell of the person they used to be, but they're they're still in there. I know when our listeners know that my son Ben, after nine years of fairly good success working full-time, leasing a car, off social security, he crashed during COVID again and was almost six months in the hospital, and it took a long time to get him stable again. And he's not where he was, but but I brought pictures to the hospital and they were lovely, and they you know, they tried to see the young man under the symptoms, but the face is different when you're feeling emotions and feeling joy, and you don't have that blunt affect. And so just like when my mother was ill and I had to bring pictures. Here's a person, look, she's a person, look, we love her. So I did bring pictures and they were all I think it brought tears to their eyes. They were, oh, that's who he is. That's so thank you for that.

SPEAKER_02 16:14

So I've had pretty good luck at the actual hospital. You know, when Jim is in crisis, that is a time when people talk to the family a little more. It's more the leading up to crisis when um you really want to stop that crisis. And that's when when you have the most trouble. The staff often aren't willing to think that he's going to crash. And as a mother, I know when he's going to crash. And that's when it becomes really frustrating, when no one will listen to you. Then once they crash, then often then the family's more welcome. Well, we should help with this then. But um, but you kind of want to have some early intervention at times too.

SPEAKER_03 16:57

And that's like that's one of my questions is um what what hold on one second. Yeah, go go through the list, it's fine. Yeah, how who should therapists alert and educate in the larger community before kids reach the age when symptoms of severe mental illness typically start to manifest? So it's a broader, it's a broader question than what we just talked about, but I think a parallel process, you know. I mean, I do I think that's spot on to say again, maybe if there's folks out there who are listening who have had multiple hospitalizations or can already see the the pink flag starting to turn red. I don't know what would stop you from emailing your treatment provider or your your child's treatment provider, your loved one's treatment provider to just say, hey, I know you can't divulge anything to me because of HIPAA, or maybe maybe they don't know that, but I want to tell you X, Y, and Z happened yesterday, or the last three weeks, I've noticed what I've noticed, whatever those flags are.

SPEAKER_04 18:00

I'm not sure I understand the question. So you're asking us if there's things the family members can do to alert people, or if there's things the therapists should do to alert people? What's your question?

SPEAKER_03 18:11

Um so so my my broader question is I would want to hear from you guys what what are you thinking about that the larger treatment community, therapists, psychiatrists, um, hospital staff, psychiatric nurses, what do what do we need to know before so that we know what we're looking for before most like most patients are at the age 19, 20, 21, where we're really going to see the manifestations of the symptoms? It's like a preemptive.

SPEAKER_02 18:38

What what are we looking for? I just talked to a mother today. I'm not sure if this will get the question or not, but I spent two hours with a mother who has a 27-year-old son with bipolar disorder. And he got sick when he was 13. And all through school, she kept begging for help. And the system was telling her, you do not want the stigma of a psychiatric label. Um, so let's just try to work on, you know, getting him through. And they just resisted um labeling him as having bipolar disorder or even having a mental illness. When he was 18, he was almost immediately charged with a felony. And now he's in prison. He has seven felonies. And so my thought was, and she certainly thinks this how stigmatizing is that, you know, to be in prison. So this tippy toeing around not wanting to stigmatize someone with a mental health diagnosis means they can't get any medications, they can't get help, the family can't get educated if they don't know which mental illness or if it is a mental illness they're dealing with. All of that, I think anybody helping dealing with younger people, younger than 18, could really get ahead of that by, you know, I always would rather that people would say, here are the symptoms of drug use, here's what normal teen behavior is. And sometimes these are blurred or mixed up with oncoming mental illnesses. And those are real. This is the age when boys get sick and so forth. You know, I think we have to face it, educate it, educate everybody, name it, and then we can all, as families, hope we're not the ones that end up with mental illness, but to be silent on it or to not label a child when they obviously have a mental illness, um uh I think is misplaced trying to be nice to people and then you get disastrous results later.

SPEAKER_04 20:53

And and nobody wants to be the deliverer of possibly bad news. So I remember a friend of mine uh was a pediatrician. She's since retired, and I said, Oh, isn't your job so much fun? Cute babies, you know, and she says, Well, it's fun until somebody's child is seriously ill and you have to break the news to them. That's the not fun part of the job. Or what you're doing doesn't work. And I imagine for therapists and psychiatrists, it's that news is particularly difficult. But I think in terms of early detection, we've mentioned this before, but school therapists should be alert to the signs, should be open to meeting with family members as necessary to learn more about what's going on. And if someone had said to me, like, I don't know if this is what it is, I don't know, because it could be a lot of things, like Like Mindy was saying, it's all mixed up. Extreme, I thought I had an extreme adolescent. If someone had said here, educate yourself about this illness because you're the one that's there 24-7 and you see the symptoms. And I'm not saying it's this, but I'm saying there's a chance it's this. And that's not easy news to give you. But I'd like you to learn about it so that if it is a serious mental illness, if it is bipolar schizophrenia, if we catch it early, there's a chance that it really won't affect your son's life as much as it will if we wait. There was an episode when my son was, I want to say about 15, and he was just like, Do I go to school? Do I not go to school? And he was very active in his youth group and very happy out of school, but not in school. So I thought, oh, he's got ADD, and so he's not doing well academically. So his ego and his confidence. But there was one time he we we just had a fight, he was gonna run away, then he wasn't gonna run away, and the the things we go through. And he was looking through old photos, and then he looked up at me with tears in his eyes, which was unusual at that point, and says, Mom, I I don't understand. I used to be so happy. I I have to go take a walk and figure out why I'm not happy anymore. And it for that child, my heart breaks because early intervention might have not that I would have loved to hear the possibility of schizophrenia, but it after I got over hearing the news, it would have opened my eyes to what else it might be. So I think that not shoving it under the rug would be a very good thing. And maybe having school education programs, general school education programs where people are educated about these illnesses and what to look for and how important early detection is.

SPEAKER_03 24:09

I think that's so spot on. And I I liked, I liked you what you said about here's how I would have been able to kind of absorb it if the clinician or the service provider was saying this isn't easy to say. I'm sure it's not, I know it's not easy to hear, but I want you to be as prepared as possible.

SPEAKER_04 24:25

You know, just in case.

SPEAKER_03 24:26

Just in case. And saying, even, you know, to me, or Mindy, to your point of, you know, it's really stigmatizing to have seven felonies versus versus a diagnosis. I it made me realize I had two trains of thought. One was um clearly we need to continue to work on um reducing and eliminating the stigma around all mental illness. I mean, even just the language of saying um I'm I'm not bipolar or my loved one isn't bipolar, I'm my loved one lives with bipolar or has this diagnosis. There's other dimensions to their personality, there's other dimensions to their life besides the diagnosis. I know this was large schizophrenia, obviously. But to also say, you know, my child or my loved one is much more than just the diagnosis. Um when I was going through grad school, one thing they would we would were taught around diagnosing minors and being really careful was around um, you know, mental health care in the United States being, you know, insurance, the way the mental health um coverage works. If if you offer a diagnosis to someone and then at some point they change insurance because they changed jobs or they're they were a minor and then they became, you know, an adult, that diagnosis might follow them and make them harder to get insurance, make it harder for them to get insurance.

SPEAKER_04 25:44

And we we can get into everything that's wrong with the system, but that is definitely one of them, you know. Yeah, yeah. So, but we want to help you become the best therapist that you can be. So these are all really important points. And we have a lot of topics coming up in future episodes that that we're covering, including why isn't there more research done into this? We're interviewing Dr. Jeffrey Lieberman, the author of Malady of the Mind. We have a a lot of episodes coming up to talk about the system, not that we can fix it, but we can we can point out the discrepancies. But um, but you are one of the one of the good guys and one of the heroes and one of the people who really do care. And I applaud what you do. So what else, what else can we answer for you as sort of general moms that you haven't maybe had a chance to ask your other families?

SPEAKER_03 26:43

So the other big pressing thing is also just to talk a little bit more. I'd love to learn or hear a little more about how you how you both think about um THC marijuana use with severe mental illness. And I I'm asking this from my experience with some of my my families and my clients, where this was a self-coping, you know, a treat, a self-treatment kind of coping mechanism, and how it was seen as a good thing and how it turned out to be maybe not so much a good thing, depending. So I would love to hear a little bit more about how you both think about that.

SPEAKER_02 27:19

That's a hot button topic for me because of all this legalization and and uh it's going on everywhere, including my state of Minnesota. And I am strongly opposed to legalizing marijuana before age 25. Um, and I I'm fine with the decriminalization, and that's a portion of what's going on in Minnesota where they could decriminalize, not have people clogging up the jails and prisons for low-level drug offenses with marijuana. Um, but I'm convinced that it accelerated, exacerbated, and possibly even had a big hand in causing Jim's schizophrenia. And he thinks that too. It was definitely a gateway drug. There's no way he stopped at marijuana, but that's definitely where he started. And Joe Camel was also influential in his high school days because he started smoking just plain cigarettes, and there was all the he got a t-shirt with Joe Camel on it. Uh, I he still remembers, I intercepted the mail, which he thought was illegal and threw it away, but he still got other things, and then on to the marijuana, and then on to most every other drug that he tried in high school. And now, speaking of Dr. Lieberman's book, which I just read recently, he has devoted his life to studying schizophrenia for the last um 50 plus years. And he said when he was first asked about marijuana and did it cause serious mental illnesses, he kind of laughed and said no. And he's come full circle to say not only does it cause psychosis, it causes schizophrenia. And that's a further leap than the expert that we had on a year or two ago who just said it caused psychosis. Dr. Lieberman said it causes schizophrenia, and it can cause schizophrenia even in people that don't have a predisposition. So it's a very serious thing. I don't think uh people have a clue, generally speaking, how dangerous this is because of the effect on young minds.

SPEAKER_04 29:39

Wow. So when we have Dr. Lieberman on, we'll have to talk about that at greater length. There is always the, I don't want to turn this political, but I will say that there's also the side of things that are like, well, if it's legalized, then it can be uh controlled so that they're not going to have fentanyl in the marijuana. So that I'm not gonna say one thing or the other about legalization of medical marijuana. I think that my son would have he got it when it was illegal and he could get it now, the stuff that you can't get in the medical store is so recreational, but I'm I'm all for the decriminalization. And I said I wasn't gonna get political, but I just did. But anyway, I that is very interesting to me because my son was a huge pot smoker. It did not lead to other drugs in high school, but even now listeners know that uh about four or five months ago, he cooked up an idea that he was going to leave his safe and warm group home and just camp. I'm doing air quotes if you're not if you're not watching on YouTube. He was going to camp. In other words, he was going to choose to be homeless and live on the streets. And he cooked up this great idea while high. So anytime he makes a a not smart decision, he's usually pretty good with his money. But this month he wasn't. He bought two impulse items and then started asking me for money. And all I did was help him return the items. But, you know, they cook up ideas that seem smart when they're smoking hot. And given his druthers, he would live a life high. That's what he would do. So I'm not a fan. I don't know what we can do about it, but I really think the way marijuana is now and the things that are added to it and the strength of it could definitely cause psychosis. And now I'm just hearing for the first time might cause schizophrenia. How do you keep teens away from it? I have no idea. Educate them and hope they make a good decision, Leah. That's but so we're not fans of marijuana. Especially for that reason.

SPEAKER_03 32:01

Well, and I what's helpful to hear about that is is then um kind of helping me be a little more armed and a little more um, you know, hey, what let's really talk about this, whether it's your loved one or if if the person in in my office is actually someone who's who's symptomatic or you know, in and out, or you know, whatever the case might be, to just say, here's what we do know, um, that it's a risk factor. And and I think what I want to share though is what I what I often hear is, but this is something I've always used or I used when I was younger that helped me feel better. And I, you know, as brains develop, you know, we know that they change. We know that substances, you know, you don't, if you if you're not getting the consistent exact same product every time, you you're not getting the exact same product every time. So your your high and your set and your setting are going to be a little bit different. Um so just to kind of have a little bit more ammunition to kind of say this is not a good idea, this is not an adaptive coping mechanism.

unknown 33:02

Okay.

SPEAKER_02 33:03

And I have uh educated our granddaughter, who's a freshman in college, and actually Jim has helped to educate her too, both by example, but also he's very concerned that she might use marijuana. So um we have definitely had an impact because she, whether she's tried it once just for the heck of it or not, I don't know. But I do know she's not a marijuana user. She's very worried about, you know, getting schizophrenia with Jim as her relative. And everybody has more than one relative, and so does she. Now that she's um at college, uh, she has seen a therapist herself. You know, probably two-thirds of the kids in college are. And it's it's um just anxiety, depression, COVID, the stress of college. But thankfully, she doesn't have the added added uh disadvantage that Jim had of scrambling up her brain with marijuana. Oh, she did actually learn from that. She said she's trying to share that information with friends and they they don't listen. Exactly my point.

SPEAKER_04 34:11

So, but you know, there there was no, there was no one deterrent to drunk driving. It's a little of this, it's a little of that, it's a little education here, it's a little breathalyzer there. So we have to arm ourselves with all the tools that we can, and knowledge is one of those, certainly. Leah, we have about 10, 15 minutes left. So what else are you burning to ask us?

SPEAKER_03 34:37

Um, so what I'm so my other, I can't believe how fast this goes. Um the other thing I kind of made a joke at one point, I think, when we were first kind of going back and forth about can getting together, having me on. And the joke that I'd sort of made was um, when do you all want to get on a bus and go to the respective capital cities where the legislators are in your states and kind of talk? And and I really it this came back up after I listened to the episode where where it was listening to your um the stories from the listeners. I was I was like, if there was a way a way we could just teleport into everybody's state capital. Um it it's I I'm not sure exactly how to frame the question. I think you understand what I'm asking. If if you guys think that's worth it, if if you're already, I mean, Mindy, I know you're already, you know, you you were a legislator in Minnesota, so you were already the person whose office we might land in. Um what would you say? What should we say if we go?

SPEAKER_04 35:36

Um I I will I will say one thing that is an issue in that in many cases it is the relatives of people with the illness that are going to advocate, not the people with the illness. There are people like Jim now with schizophrenia who are aware they have it, and we've had a few of them on the show. But my son wouldn't be a poster child for schizophrenia recovery because as far as he's concerned, he doesn't have schizophrenia. Why would you label me with that stigma? So the advocacy, let's do it, absolutely, and tell our stories, absolutely. But the problem we come across is we don't have a poster child for that because many people, the people who are doing well with it and can and accept it are doing well with it. It's the people who my son who without me would be homeless or dead or in jail that don't know to come and advocate for themselves. And so that makes that sort of storytelling difficult because it's told secondhand so many times. I don't want to come at you with an obstacle. We we certainly this whole podcast is about advocacy, but that is one of the problems with the stigma. We don't have representatives of people who have the illness that are held back by the illness because they don't want to speak up.

SPEAKER_02 37:08

The mental health system, when you're looking at people with lived experience who have mental illnesses, is designed by everybody but the ones with schizophrenia. You know, you might have somebody, a couple, we've had really high-functioning people on this program, but they are the exception. And so people like our sons, all three of our sons on this podcast, aren't the ones at the table, like Randy said. So the mental health system is skewed towards those who seek care. We don't have people represented who have anasygnosia. Why would we when they think they don't have an illness? So our whole system is designed for those who will call 988, who will make an appointment with a therapist, who will go to the hospital, who will take their medication, and we shy away from the kind of care like Mayor Adams is looking for in New York City because that looks coercive, that looks overbearing to people who aren't dealing with atasygnosia. And the mental health system doesn't agree. But people like us, and we did have Brian Stetton on this program recently, who wrote the plan for Mayor Adams, and we all agreed that it's compassionate care when people don't know they're sick, they're very, very sick, they're possibly not dressed for the weather, they're unhoused, they're not eating properly, they're victims, they're drug users, substance abusers, all those things. The kind thing, the compassionate thing would be to get them care, whether they know they need it or not. And that's not who our system is designed for. So the very sickest people are the ones who mostly are the last on the list to get care with our current mental health system.

SPEAKER_03 39:07

Well, I that makes sense. I it is hard to it's hard to hear that, and but it makes sense. Um it's it's it's it's kind of like the easier to treat. It's it's easier to treat somebody who's gonna say, Yeah, I'm receptive to it. And I I want it, and I I will, you might, you might need to convince me there might need to be some incentives, there might need to be some interventions along the way, but I'm I'm pretty much on board.

unknown 39:31

Yeah.

SPEAKER_03 39:32

I but to me, you know, I hear that and I say, well, that that that's part of the education. Again, you know, if if if some of us are going to go back and talk to the um graduate programs and say, hey, let's be, let's reframe HIPAA, let's get a little more accurate around HIPAA, I think we can still also, in the same vein, go back to our legislators and say things like what you just said. Did you know there's a whole other population that's even harder to reach, but that I think we're ethically bound to compassionately reach them and their families.

SPEAKER_02 40:01

And and I'm, as some of our listeners know, I'm working in Minnesota with two legislators, um, senator and a representative, on this very issue that we're bringing something forward next year. NAMI, NAMI, Minnesota passed a really good um provision in the civil commitment law here to engage people earlier before they reach criteria for involuntary care, but it wasn't funded, and so no county has opted in. So we're working on that as well as more accountability for the civil commitment system. We've gotten so um skewed to self-patient-centered care, which is a really good thing for people who know they're sick and are directing their care. But for someone who isn't doesn't think they're sick at all and their choice is to have no care, it doesn't work well. So to have some accountability for the civil commitment law we're working on as well.

unknown 41:02

Yeah.

SPEAKER_04 41:02

Can I ask you one question, Leah?

unknown 41:05

Yeah.

SPEAKER_04 41:06

I know we were, I was going to ask you, we talked earlier before the show, because many of our listeners have asked for a show about what if your significant other has schizophrenia? And although we're three moms in the trenches, I certainly would, you know, love to do a show about that, but that hasn't been your clinical experience at this point. But you do counsel families, and obviously without giving away any names or stories, have you ever found that a serious mental illness in a child can break up a marriage? That there can be difficulties between the husband and wife, or husband and husband, or wife and wife? Do you have any tips for a family that is being torn apart by differing ideas about mental illness? Surprise question.

SPEAKER_03 42:09

Um yeah, I I have seen that and it is it is it is so heartbreaking. And it's I think it's what what I might one tip I would have is to say, you know, there's not another adult on earth that loves this person the way you do, um, that understands what you're going through, because there's only one other parent. You know, it's even even if if it's my spouse and me having this conflict, I've got to remember there's nobody else on earth that understands our child the way my co-parent does. And and I would say the same thing back to that person. Um I I just my heart goes out to to folks who are in that situation because it's, you know, everything we're talking about here, we're talking about nuance, we're talking about complication, we're talking about um the uniqueness of everybody's brain. Um, everybody with this diagnosis is still a unique brain and a unique heart and a unique human. And there might be something else going on in that couple relationship where, you know, it's a pretty not normative experience to raise a child through adulthood with a severe mental illness. So, first I would maybe start to say I would want to normalize and validate how hard this is, especially if you've got two really different ways of thinking about how to navigate it or address it. Um, I would encourage both parents to get into their own individual therapy as well as couples therapy. Um, I would encourage them to slow down on splitting up. Um, maybe if there's a three month or a six month period where we can agree to just kind of take the splitting up idea off the table until maybe the child is more stable if they're not at the time.

SPEAKER_04 43:51

Um, could be recommended. Sometimes just educating the whole family together. I have seen couples. Come into an eight-week class disagreeing loudly about what's wrong with their child and coming out at the other side going, oh and so that education can be really helpful as well.

SPEAKER_03 44:15

100%. And an exploration of what is your worst fear? And what where in where in your history did you encounter this before? Because usually when there's that strong of a reaction, there's something else that's historical before the before the couple got married and got pregnant and had the baby.

SPEAKER_04 44:47

All right. Thank you. So we're pretty much out of time. Is there any, you know, last do you have another minute to just ask us a real quick, uh, quick fire question if you have anything else?

SPEAKER_03 45:00

Um, I don't have a question, but I don't have a question so much as just you know, admiration and just I, you know, it's it's amazing. I I feel like, you know, the the world is really thirsty for this from you guys. And I'm so glad you're willing and able to do it. And I guess my question is how what what's your self-care? How do you how do you replenish after rough days or rough weeks?

SPEAKER_02 45:22

I sleep a lot. I read a lot, I walk a lot, I have a lot of friends who I walk with and talk with. And I'm in two groups of five moms where we share monthly what's gone on in the past month and troubleshoot who we can help the most. And always someone is in crisis in each group, and often uh the rest of us aren't, so we can we can help. Wonderful. Wow.

SPEAKER_04 45:50

I have learned to throw away the adage, you're only as happy as your unhappiest child, because I cannot I work hard to not let my happiness hinge on Ben's happiness. I do my best to take care of him and make him happy. And if he's having a bad day, and it's easier right now that he's not living with us, but I have chosen to be happy anyway. I have good days and bad days, but I have I have other as I've said to him, that there's times when I don't want him to visit because his behavior is erratic, I say, I love you and I will always love you. I have a lot of other people I love too, including me, and I have to take care of them as well. And so I'm gonna make the best decision I can. So I've I've learned to compartmentalize when I can. And if we have a good day, I just store it in the attic to revisit. I said, Great, we got one more day to make good memories, and I look for that and and enjoy the other joys in my life and know that if the other shoe falls, I'll know what to do.

SPEAKER_02 47:05

And as for me, I wallow in the adage, you're only as happy as your least happy as child. When Jim is in the tubes, I am in the tubes. Sorry to say, I I can all my compartmentalizing, all my friends, everything I could possibly do. If Jim thinks I'm the Antichrist or is relapsed into substance abuse, I am dead.

SPEAKER_04 47:30

That's honest. Yeah. And I, yeah, I get it. Well, thank goodness for people who go into legislating and advocating and being a practitioner like you, Leah. Thank you so much for joining us today. And I'm not going to promise a part three right now, but you're welcome back anytime because listeners loved your last episode. So thank you for what you do.

SPEAKER_03 47:55

Thank you both. And say hi to Mimi. And it's just wonderful to be back. And I so appreciate what you guys are doing. It's it's amazing.

SPEAKER_04 48:02

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, 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.