Parenting Children with Serious Mental Illness - Navigating Grief, Hope, Advocacy and Joy (Ep. 142)

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Those have been really terrible low moments, but I always think of what can be next.
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So if I can be working on fixing things in the mental health system for Jim, for others, that is where I get my hope.
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And I may die with grief in my heart, but I will not die with guilt in my heart because I have done everything for this child that is humanly possible and will continue to.
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I can't give up joy in my life.
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What is the point of doing that?
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It doesn't serve anybody.
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And it also, you know, it's not an atonement.
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You being miserable is not going to cure your kid.
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In this episode of Schizophrenia Three Moms in the Trenches, the tables are turned.
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And we three moms are interviewed by OPLM, other parents like me, about serious mental illness in your child, grief, hope, joy, and advocacy.
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Welcome to our podcast, Schizophrenia, Three Moms in the Trenches.
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From the place where schizophrenia and real life collide.
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East Coast, West Coast, Middle America.
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With Miriam Feltman, Mindy Gryling, and Randy Kaye.
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Thank you to OPLM for making this members-only content available to you, our listeners of Schizophrenia, Three Moms in the Trenches.
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You can learn more about OPLM, Other Parents Like Me by visiting their website, OPLM.com.
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Hello everyone, and welcome to our Thursday night speaker talk.
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I am Tippi, a peer parent and mentor here at Other Parents Like Me, and I've had the joy of co-hosting these events since we launched in 2022.
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You may have seen me in our newcomers meeting or our Hope, Help, and Healing meetings on Friday morning.
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And I'm Shireen, also a peer parent at OPLM, and I'm so excited to be joining Tippi as your co-host tonight.
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We're really glad you're here with us tonight.
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For those of you new to our platform, our speaker talks offer learning opportunities for all, fostering insights into our individual journeys.
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And other parents like me, we're all about creating a safe, supportive space for parents and caregivers.
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Whether you're here for guidance, connection, or just to feel a little less alone, we're so glad that you've joined us tonight.
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Our speaker talks are recorded and available in our private resource hub, which is just for members to keep things confidential and respectful.
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There are more than 15 every week, and you can drop in whenever it works for you.
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Great, let's jump in.
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We're thrilled to be joined by a group of wonderful women, Randy Kay, Mindy Gryling, and Mimi Feldman, our authors, advocates, and co-hosts of the podcast Schizophrenia: Three Moms in the Trenches, drawing from their lived experiences as mothers of children with serious mental illness, they have become po they have become leading voices in mental health education, advocacy, and family support.
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Through their writing, speaking, and work with national organizations, they help families navigate the challenges of mental illness while promoting greater understanding, hope, and resilience.
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In tonight's conversation, we'll explore the realities of parenting a child with serious mental illness and challenges families face along the way.
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We'll discuss navigating uncertainty, balancing hope with acceptance, caring for ourselves while supporting a loved one, and finding connection in what can often feel like an isolated, isolating journey.
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Through their shared experiences, our guests offer wisdom, perspective, and encouragement for parents walking a similar path.
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Now, tonight's um speaker talk is going to be interactive.
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So uh there's gonna be Q ⁇ A throughout the conversation.
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So whenever you have something that you'd like to know, please uh raise your use the raise your hand feature, or you can also put it in the chat and you can send it to either me or Tippy uh during the in the chat section.
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Just make sure that uh you direct it privately to us if that's how you want it, or in the general message to everyone if that's how you want it.
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Um just please refrain from waving at the screen to signal as it may be difficult to see with the number of viewer windows.
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Perfect.
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Thank you, Serene.
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And without further ado, I'd like to formally welcome Mimi, Mindy, and Randy to Oak VLM.
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Thank you for agreeing to be here with us tonight.
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Thank you.
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It's my pleasure.
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I I'm going, I'm Randy, and I'm going to begin by just a basic introduction of my two other moms.
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We have a podcast called Schizophrenia, Three Moms in the Trenches, and we're still in them.
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Um, our sons, I understand from speaking with Tippi and Shireen, maybe a little bit older than many of the people here, but maybe not.
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Our sons are all pretty much in their 40s, I think.
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Um, and I'll just start with a general introduction here.
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Uh, my name is Randy.
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My son's name is not Ben, but I call him Ben for publicity purposes.
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When I wrote my book, Ben Behind His Voices.
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Now, ah, 14 years ago, uh, my son came upon me and said, What are you doing?
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What are you writing about me?
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And I said, I'm not writing about you, I'm writing about me and my experience.
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And he said, Oh, okay, well, don't call me.
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And so he told me, he chose the name Ben.
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So I refer to him as Ben in most situations where people might know him.
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Um, my book was published in 2012, traditionally, and uh about two or three years ago, I had kept the audiobook right, so I published an updated audiobook of it, and that has more of an update of where Ben has been since the end of the book, and it ends with some of my most popular, most read blog posts.
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Um Mindy Gryling is the author of Fix What You Can.
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And Mindy's book is um not just a memoir, but a memoir of the stories combined with her journey as a state legislator in trying to change the laws to fix what she can.
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And uh, you know, my book is strictly a memoir, but I do have uh chapter guideposts, not in the middle of the story, but during every chapter, things like why won't they take their meds and how can you enjoy a holiday without your loved one and things like that.
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So um, Mimi's book, I know she's a it says Miriam Feldman there on on the uh Zoom Square, but nickname is Mimi.
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Her book is He Came In With It, also Um uh 2020, because I think we all met during COVID and that's how we met online.
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And it's a beautiful artistic memoir.
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And this self-portrait, her son Nick, who has schizophrenia, is the artist who created that self-portrait.
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So that's a little bit about us and our podcasts.
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I will tell a one-minute version of my story because the questions will bring more out.
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My son Ben is 44.
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We have been through the shoots and ladders of a journey having a child with a serious mental illness.
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Peak of the ladder is when he lived with us for nine years and stayed on Closeril.
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We practically had to shove it down his throat every night, but no meds, no bed.
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And during that period, he got work.
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He ended up working full-time, getting off Social Security, driving Alexis, making a speech at his sister's wedding, dancing with me at my wedding, and particip and earning uh 57 college credits on the dean's list.
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Uh bottom of the barrel, hitting bottom is I would say where he is right now, probably unhoused on the streets of New Haven, Connecticut, uh addicted to pot and crack cocaine, sadly.
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So I have spies everywhere to find out.
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All the cops know me and they keep an eye out.
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And I have spies to know where he is, but he doesn't even have a phone because he traded it for drugs.
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And so that's the top and bottom of where we've been so far on our journey.
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Mindy.
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Jim, which is his real name, and he helped with the book that I said was about our whole family, including him, um, is 48.
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And he's also had the ups and downs.
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He started out, probably like many of you, and um was a college student, and he did pretty well at a very supportive, uh, structured environment for about 10 years soon after he was diagnosed, where he worked full-time.
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He had friends, he lived with a few other people in a house, but then he met a woman and she got him into crack and he got kicked out of that.
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And so we've had ups and downs ever since then.
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But right now he's been doing really well.
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We kind of traded places with Randy.
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Her son was doing really well.
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Now he isn't, and Jim wasn't doing really well when we started the podcast.
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Now he is, he's living in uh permanent supportive housing, and we have a lot of he's back to work, so we can talk more as we go along.
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But this is, I think the point here is you can go up and down in this journey.
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Mimi.
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Hi there.
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Um, my name is Miriam Feldman, and my son is Nick, and Nick just turned 40.
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We've been on this uh roller coaster for about 20 years now, and um the first 10 to 15 years were the nightmare that all of us have experienced.
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About five years ago, he started closeting, and that also changed our lives a lot and is uh has improved things a lot.
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Now he he lives in his own apartment, he has a caregiver who comes to give him his meds, and he is part of an ACT um group, which is the um, oh gosh, I just blanked down, ladies help me.
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Act assertive community treatment.
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Thank you, Mindy.
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Assertive community treatment.
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And um, and so he has a peer counselor and different people, and in my mind, it's a success story.
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I mean, again, like Mindy and Randy said, it's up and down and it can change at any minute.
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Um he's kind of on a plateau right now, not really improving, but not getting worse.
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So I'm grateful for that.
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All right, that's us in a nutshell.
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Hit us with questions.
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Okay.
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Does anyone have questions right off the bat?
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Otherwise, Shereen and I will get us started.
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Um the first question is going to be when your child was first struggling, what did their early days of uncertainty feel like?
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And what helped you get through that period without the clear answers that maybe you have now?
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Well, I can say something about that.
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Um, first of all, still no real clear answers.
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I mean, that's one of the things you have to make your peace with and learn to live with, is that it just it never changes.
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I mean, it you never get a permanent answer or permanent condition.
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It changes all the time, as Randy's story can show you.
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But in the beginning, what I would say is 20 years ago there weren't groups like this.
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And um I was in the middle of a big city, we lived in Los Angeles, and there was not a person in my whole galaxy who knew anything about this, and nobody talked about it, and I thought I was going crazy along with my son because there was just no way to get answers and to get help, and the thing that really helped me was I stumbled into a NAMI family-to-family group, and that brings me to my answer of how do you cope in the beginning and how you cope all the way through, really, is knowledge because there's no magic pill, there's no end to it, this is it for the rest of your life.
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There's not a point where okay, everything's better now.
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So you need to get knowledge fast and as much as you can.
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You need to find people who understand and are going through the same thing, which is so much easier to do now.
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And um acceptance.
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Acceptance is a big one.
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We spend a lot of years fighting the truth of this that we could have spent helping our kids or educating ourselves or whatever, and instead we fight the truth, and it it's not productive.
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Um, I can go next.
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Thank you, Mimi.
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So I'm I'm going to combine this question to one that I see in the chat, which is from Pam about uh symptoms during childhood.
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And, you know, Mimi's right, like the more we know, the better we can help, and the better we can cope, and the earlier we can catch it.
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So I I want to preface this by saying just because your child has night terrors or aggression or anxiety as a child does not mean he's definitely going to get schizophrenia.
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When I started learning about the typical progression in males of schizophrenia, it was like this.
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As a child, they might have been a little anxious, they might have had ADHD-ish type symptoms, they might have been a little bit ornery, they might have been oppositional, but that doesn't mean that every child that has ADHD is going to develop schizophrenia.
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It's just one of those things.
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And of course, we try to treat, you don't blow your nose and think you've got cancer.
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Like you're blowing your nose and you think you have a cold.
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So it's normal to cope with what we think is there.
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With that said, yes, my son had those symptoms, but it was, you know, his father had abandoned the family when he was six, and I thought it was psychological issues.
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But overall, he was great.
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He got straight A's in school, he had a lot of friends, he was good to his sister.
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Uh so he didn't have night terrors or anything like that, but he was somewhat anxious and maybe overly smart as a child.
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But with males, typically, the changes really begin as the brain begins to develop in adolescence.
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And so for my son, I mean, I would say we're Jewish, so at his bar mitzvah, like during the dress rehearsal, he went, I'm not doing this and ran out of the room.
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I so maybe it was a little extreme, but the next day he got up and did a great job.
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So I just thought, oh, he's a little anxious.
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It's okay.
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Um, middle of high school is when I started to hear weird things like, you know, everybody hates me, and uh, you know, mom, there are psychic vampires.
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And, you know, what drug is he taking?
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What friends is he hanging out with?
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He was reading these weird books, like you just never know.
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So yeah, my son wasn't diagnosed until he was 18, and I was the first one to kind of figure it out from kind of learning.
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So uh high school was just confusing, and now that I look back, I go, oh, I should have known.
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And I will say that the one thing that I wish had happened is to have known then, as Mimi was saying, that oh my god, it's not normal to talk about psychic vampires, and it's not normal to drop out of high school in the middle of your two months shy of ending your junior year, like that's not normal.
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And I would have, when he was under 18, forced him to go to a psychiatrist and gotten him onto meds while I legally could.
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Um instead, he went to troubled teen camp in Montana, uh, where a lot of them are.
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And of course that helped him a great deal, but it wasn't he wasn't really there when you looked in his eyes.
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So the early symptoms are there, but they don't always mean your child is going to get schizophrenia.
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It's just good to keep your eyes open.
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And can I say something a quick addendum to that, Mindy, before you go?
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Also, we we have a built-in mechanism, we have a built-in drive as mothers to want to normalize things because we don't want to believe it's terrible.
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And if you were to make a list of red flags for serious mental illness and a list of normal teenage behavior, you'd basically have the same list.
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So there's the Vinn diagram doesn't work at all.
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And all I have my feeling about it is I don't think you can possibly overreact enough.
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I mean, what what Randy is saying is true.
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Most of the time, it's probably not going to be serious mental illness.
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But I think a lot of us tend to want to say, oh, he's like all the other kids, it's nothing, it's nothing.
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And I have the same regret she has, which is I didn't intervene and I wasn't forceful when I still had some control.
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And once you lose that control, once I turn 18, there's you you're really hogtied.
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I mean, you're it's very limited what you can do.
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Go ahead, Mindy.
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I'm sorry.
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No, by the way.
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So um I had the advantage over the other two of having a grandmother who I grew up with right across the street, who had schizophrenia.
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So I knew when uh Jim eventually said he was hearing things and people were talking about him, that struck me between the eyes that that was just like my grandmother.
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But that was when he was 21.
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It did not help me when he was a teenager and I was going through what Mimi just said, uh, what is normal behavior versus what is the behavior of someone coming down with mental illness.
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I just thought because he's using cannabis, and he told me later, he actually tried virtually every drug there was, at least once, but he was using cannabis, and I didn't know what we now know about how it affects young brains.
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I thought it was like alcohol in my day.
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So I wish I would have known that that's a big, huge red flag and a danger symbol.
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And I have certainly inoculated my granddaughter like I didn't do Jim, but I didn't know he had a mental illness at all.
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He was struggling, he is bright like all of our sons, and he, however, had uh ups and downs with his grades, and he got into fights and he got uh sent home and things like that, which were shocking.
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That just doesn't, I thought, happen in our family, but it but it did.
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But when he was 21 and he was um finally very um flagrant, he had a psychotic episode, we had to call the police, it kind of came on suddenly he was using drugs, then we had to face it, uh, but not before.
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And I, unlike Mimi, and uh I don't know about Randy, but Mimi just talked about it.
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Um, I had the best of resources back in 2000 because I was a state legislator.
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And so legislators with any kind of problems can call in experts in your in the state, and they were all too happy to come in and inform me.
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And by the way, here's some legislation they wanted passed.
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So I got um a fire hose education, which I have to say was helpful, but it didn't really help me his disease progress just like everybody else's.
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Thank you, ladies.
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Um, I was wondering if I could ask you a question about balancing hope and acceptance.
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How do you hold on to hope without setting yourself up for disappointment when things don't go as you wished?
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I'll go first with that.
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Um it's a constant balancing act.
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And so what I generally say is I always have hope, but I don't always have expectation.
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So that you know, where my son is right now is about as low as he's ever gotten.
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And I think I'm gonna be really honest here, I think in the last ten years I've been prepared to get a call that he's dead every day.
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But preparing for grief doesn't prepare you for anything.
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So mostly I live in hope because I'd rather hope.
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You know, and uh even in the last two months, we've had some really good days when uh, you know, I made a boundary that he had to be c sober for three days before I would see him.
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And he would do it.
00:22:01.519 --> 00:22:04.319
And we had a lovely lunch and a great conversation.
00:22:04.480 --> 00:22:08.640
And every time there's a day like that, I'm just like, I got a good day.
00:22:08.799 --> 00:22:11.519
I'm going to catch that falling star and put it in my pocket.
00:22:11.680 --> 00:22:16.480
And, you know, ordinary, as Mimi was saying, ordinary is a miracle.
00:22:16.559 --> 00:22:18.400
Like, ordinary is fantastic.
00:22:18.480 --> 00:22:24.960
And I will never not honor a good day by going, oh, but shoulda, coulda, woulda.
00:22:25.119 --> 00:22:26.720
Like I just don't do that to myself.
00:22:26.799 --> 00:22:38.240
And that's why that those kinds of things, it's actually why I wrote my second book called Happy Are Made Simple, because people kept asking me, how do you hang on to hope?
00:22:38.400 --> 00:22:49.519
And it's, you know, I mean, it's it's all the happiness movement, a lot of it is about not, it is what happens to you to an extent, but it's also what you tell yourself it means.
00:22:49.839 --> 00:23:11.680
And so right now, and when this situation is really difficult, and I don't know where my son even is, so I've learned to compartmentalize because I deserve joy and I owe it to the rest of my family to have joy.
00:23:12.480 --> 00:23:21.519
I will not sacrifice my daughter, my husband, and my grandchildren with me wallowing in despair over my son.
00:23:22.000 --> 00:23:39.200
I will die someday, and I may die with grief in my heart, but I will not die with guilt in my heart because I have done everything for this child that is humanly possible and will continue to, but I also live the serenity prayer.
00:23:39.359 --> 00:23:41.440
I know when there's nothing I can do.
00:23:41.599 --> 00:23:45.599
And so therefore, I just say he might get better.
00:23:46.400 --> 00:23:56.079
And I'm gonna live with that hope because it makes me feel better right now, and there's no booby prize for predicting despair, and then it comes true, and you get to say, gee, I was right.
00:23:56.240 --> 00:23:58.400
That doesn't help anybody with anything.
00:23:58.559 --> 00:24:00.480
So I choose to live in hope.
00:24:00.640 --> 00:24:07.039
I do everything I can, and then I kind of leave it up to the universe and to my spies.
00:24:07.680 --> 00:24:09.200
So how's he doing?
00:24:09.279 --> 00:24:09.920
Is he on the street?
00:24:10.079 --> 00:24:10.640
What is it?
00:24:10.799 --> 00:24:11.359
Has he called you?
00:24:11.440 --> 00:24:12.720
Well, how's he spending his money?
00:24:12.880 --> 00:24:31.839
So, you know, again, it it's I do what I can, and I try to live in hope because I believe in honoring joy and I have joy in my life, and I keep that I keep looking for new research and new possibilities and hanging on to the hope, and and we'll see what happens.
00:24:32.160 --> 00:24:33.440
So that's me.
00:24:33.839 --> 00:24:37.119
Yeah, I am I am an eternal oh, go ahead, Mindy.
00:24:37.279 --> 00:24:38.160
No, you go ahead, Mindy.
00:24:38.799 --> 00:24:40.079
No, you go ahead.
00:24:40.400 --> 00:24:41.119
I insist.
00:24:41.359 --> 00:24:41.680
Go ahead.
00:24:41.920 --> 00:25:02.400
I talk a lot about joy because I had a very specific turning point where you know, many years in Nick still hadn't we hadn't gotten him on the closer pin yet, but he was sort of uh what I call American medicine cured, which is medicated enough so that he was a zombie and not causing any problems.
00:25:02.640 --> 00:25:05.599
And so life was sort of going on.
00:25:05.759 --> 00:25:15.119
I'd gotten my I have three daughters also, had gotten everybody grown up and out of school, and everybody was still alive, and you know, the worst hadn't happened.
00:25:15.279 --> 00:25:21.519
And I was just kind of sleepwalking through my life and just thought, okay, I just have to tread water and keep everything okay.
00:25:21.680 --> 00:25:33.279
And I didn't know, I really kind of had one day where I just went, wait a minute, you know, I've lived all these years, I had all these hopes and dreams, I love these kids so much.
00:25:34.240 --> 00:25:36.720
I can't give up joy in my life.
00:25:36.880 --> 00:25:39.279
What is the point of doing that?
00:25:39.599 --> 00:25:45.279
It it doesn't serve anybody, and it also, you know, it's not an atonement.
00:25:45.359 --> 00:25:47.920
You being miserable is not going to cure your kid.
00:25:48.079 --> 00:26:01.200
And I think coming to life with your day every morning, with whatever kind of joy or enthusiasm or good thought you can muster, it's not some woo-woo idea.
00:26:01.279 --> 00:26:05.359
It's a way to live that makes a lot of sense.
00:26:05.519 --> 00:26:21.119
And when I think back on all the hours and days and weeks that I've lost to sitting around stressing about and worrying about what could go wrong and what could be bad that didn't happen.
00:26:21.200 --> 00:26:22.960
And those were wasted minutes.
00:26:23.119 --> 00:26:29.359
There were, I was, I was ruining my own day-to-day moments about something that never even happened.
00:26:29.519 --> 00:26:35.200
So it's yeah, it's a matter of, in my mind, kind of surrendered to this is how it is.
00:26:35.359 --> 00:26:40.640
It wasn't what I hoped for for my son, it wasn't how I planned it, but this is how he came to me.
00:26:40.799 --> 00:26:53.440
And I'm his mother, and I need to just to be his mother, not constantly fighting upstream to sort of make things the way I thought they were going to be.
00:26:55.519 --> 00:26:57.599
And I am an eternal optimist.
00:26:57.759 --> 00:27:06.079
So no matter how bad Jim has been, and we've had four very serious suicide attempts.
00:27:06.240 --> 00:27:16.319
One was when he jumped off a third-story building and came out still able to walk, those have been really terrible low moments.
00:27:16.480 --> 00:27:20.880
But I always think of what can be next.
00:27:20.960 --> 00:27:38.319
And so if I can be working, it's kind of like the title of my book, if I can be working on fixing things in the mental health system for Jim, for others, that is where I get my hope that because I'm going through this, no one else should have to.
00:27:38.559 --> 00:27:46.640
When Jim was first sick, um, we ended up, I ended up having to call the police and they came and said, there's nothing we can do.
00:27:46.720 --> 00:27:50.000
Um, he's not dangerous to himself or others.
00:27:50.160 --> 00:28:06.000
Never mind that he had, you know, torn up our house and broken things and you know was totally out of control, including uh I thought he was going to hit me, but I that's the first legislation then I worked on.
00:28:06.160 --> 00:28:13.920
I could go to the experts at the state and get information and work on uh passing legislation.
00:28:14.079 --> 00:28:18.240
So that's kind of where I cope and get my joy.
00:28:18.480 --> 00:28:24.000
I also, when my granddaughter was born, she's 21 now, that just changed the world.
00:28:24.160 --> 00:28:29.359
Everything about Jim was off the table when I was when I was with her.
00:28:29.680 --> 00:28:56.319
So I think um there are many ways to you know to suffer, but we should always, if we think of everybody else, the other thing that I would say where I get a lot of hope and help, and it's not really compartmentalizing, but it's doing something else besides gym is working and playing with other people in the same situation.
00:28:56.480 --> 00:29:00.799
It's not at all the same to be with your friends who aren't dealing with this.
00:29:00.960 --> 00:29:12.480
All of a sudden, they can be you can become a stranger in a group of everybody else whose kids is are you know still getting straight A's or they're going to the best of colleges or they got a really good job.
00:29:12.799 --> 00:29:18.880
But um if you're with other families who are struggling and you can help them and they can help you.
00:29:18.960 --> 00:29:40.640
And I have Mimi and Randy have heard me say this a million times, but I'm in my second uh five moms group where we all get together once a month and we hear about how everybody's doing, and then we troubleshoot for those who aren't doing well, and it always is somebody different, uh, including me, even with Jim, as I'm saying, is doing really well.
00:29:41.039 --> 00:29:44.480
That is that is another place to find joy.
00:29:44.559 --> 00:29:46.799
So never be quiet and suffer alone.
00:29:46.960 --> 00:29:53.119
If you talk out loud, you will find others and they will find you, and that's really helpful.
00:29:53.440 --> 00:30:01.680
I don't know if I can come up with one thing that's kind of hard, but um, you know, I think Jim, you mentioned 10 years old for your child.
00:30:02.160 --> 00:30:10.799
I think Jim was really sick at age 14, but we didn't know it and it didn't show itself flagrantly, and we certainly weren't to the doctor for it.
00:30:10.960 --> 00:30:16.640
So um, but I think 10, I've heard of other kids uh who are 10 or younger even.
00:30:16.799 --> 00:30:26.880
I've visited some schools when I was the legislator to a whole classroom full of little kids who had schizophrenia, so lying on the floor, hearing voices.
00:30:27.119 --> 00:30:30.880
So it's not common, but you're not alone either.
00:30:31.119 --> 00:30:47.039
I think if the if I had to pick one thing to look back on when Jim was young, it for me would be no question to make sure he wasn't using drugs because um illicit drugs, because that just makes everything so much worse.
00:30:47.200 --> 00:31:04.640
And Jim now thinks if he hadn't used so much cannabis and tried all those other things, and later he was heavy duty into uh crack cocaine like Randy's son is now, um, he thinks, and yeah, I think he's right, he would be doing so much better.
00:31:05.119 --> 00:31:06.240
That's my one thing.
00:31:06.319 --> 00:31:12.400
And if I could do two things, I would say I think you're very smart to think of him living somewhere else.
00:31:12.559 --> 00:31:21.359
When Jim was into this illness about two years after diagnosis, he was in a long-term, long-term residential place.
00:31:21.519 --> 00:31:29.519
He was there for months back when people were able to stay longer than often they are now, trying out various different meds.
00:31:29.759 --> 00:31:38.079
And I told them as soon as he got there, he we have to plan for when he gets out because he can't come home.
00:31:38.400 --> 00:31:44.559
He, if he's not on his meds and he's using drugs, he thinks he has to kill me and I'm afraid.
00:31:44.720 --> 00:31:50.160
So I don't, we he can't come home because somebody else has to make sure he's taking his meds.
00:31:50.400 --> 00:32:00.880
And then that's always been the way that that we planned everything, assuming that we are there for him, we are fighting for him, but he doesn't have to live at home.
00:32:01.039 --> 00:32:20.720
He did live at home with us for six years when he started doing better, and he was with us all during COVID, but only about a year ago in this past April, just a little over a year, has he been living in this wonderful permanent supportive housing that's for adults with serious mental illnesses.
00:32:20.880 --> 00:32:22.000
Places like that exist.
00:32:22.160 --> 00:32:25.680
I have some people coming from Colorado to actually check it out.
00:32:25.920 --> 00:32:28.160
Jim and I are going to show them around there.
00:32:28.400 --> 00:32:36.960
But um, I think you're absolutely right to think of somewhere else because I think that's can be better for your person too.
00:32:37.519 --> 00:32:38.720
Yeah, but thank you for that.
00:32:38.880 --> 00:32:51.359
Yeah, I think there's a belief that we um that you know you know, there's the trope of like, you know, throwing a kid in some institution and locking the door and dancing off into your life.
00:32:51.440 --> 00:32:55.759
And so we have this built-in predisposition for terrible guilt.
00:32:56.079 --> 00:33:02.000
But a lot of like my son wouldn't want to be living with us, you know what I mean?
00:33:02.240 --> 00:33:11.599
And and I think that for these, for our kids, quite often it's better for them not to be living at home.
00:33:11.759 --> 00:33:14.319
And I had to field those questions for years.
00:33:14.480 --> 00:33:16.079
Well, why don't you have him at home with you?
00:33:16.160 --> 00:33:20.799
I mean, I had to ban Nick from our house when he was still a teacher.
00:33:21.440 --> 00:33:26.400
I he wasn't allowed to come to the property because he had little sisters there.
00:33:26.559 --> 00:33:29.759
I could just, I couldn't have that in my house.
00:33:30.079 --> 00:33:44.720
And I think you just have to be very clear about what is acceptable and what isn't, and keep in mind always that you being miserable, me as a mother being miserable, my misery does not reduce his misery.
00:33:44.960 --> 00:33:54.880
All it does is deplete me, and I have an obligation to my three daughters, and I have a and mine were little, and sounds like you have a little one too.
00:33:55.039 --> 00:34:03.920
And it's like that child is entitled to a home, the sanctity of a home where there's peace and where he's safe.
00:34:04.079 --> 00:34:07.599
And so the bottom line is all bets are off.
00:34:07.680 --> 00:34:13.519
You get to make your own rules right now because all the rules about parenting do not apply anymore.
00:34:13.760 --> 00:34:17.679
Trust yourself, trust your heart, trust your brain.
00:34:17.920 --> 00:34:22.639
You know what the best thing to do is, and the hell with what other people think.
00:34:22.719 --> 00:34:23.599
It doesn't matter.
00:34:23.760 --> 00:34:32.480
And I will go along also with what Mindy said, which is big, big deal is just don't let your kids do drugs, do whatever you can.
00:34:32.639 --> 00:34:35.840
I was laissez-faire about marijuana too.
00:34:35.920 --> 00:34:38.159
I mean, I'm an old hippie, we all smoke pot.
00:34:38.239 --> 00:34:42.000
I thought, eh, you know, it's not the best thing, but it's not the worst thing.
00:34:42.079 --> 00:34:54.719
And it's like if I could do anything over again, I would go back to the point in time where I knew he was smoking pot, and I would like body slam into the ground and not get off of him until he was 21 years old and hadn't smoked pot.
00:34:55.039 --> 00:34:55.199
Yeah.
00:34:55.440 --> 00:34:57.840
I mean, I would have done, I would do anything.
00:34:58.000 --> 00:34:58.239
Okay.
00:34:58.400 --> 00:35:02.400
But there's that much else you can do differently to change things, you know.
00:35:02.719 --> 00:35:16.559
I'll add one little thing to that because you both said it so beautifully, and that is that we have parental obligations, and finding your child a wonderful place to live fulfills that.
00:35:16.960 --> 00:35:19.280
They don't have to be under your roof.
00:35:19.679 --> 00:35:26.320
As long as you find help them find a place to go, then that is fulfilling that obligation as well.
00:35:26.639 --> 00:35:34.079
So we got lots of questions coming in, but I'm not the moderator, so Tippy, you go Perfect.
00:35:34.239 --> 00:35:36.320
Well, these are great, and feel free, Tracy.
00:35:36.480 --> 00:35:38.639
You can always ask more questions, so don't worry.
00:35:38.880 --> 00:35:46.639
Um, so we have a question in the chat how to handle getting together with aunt, uncle, uncle, cousins who are nearly the same age.
00:35:46.880 --> 00:35:48.800
We see them a couple times a year.
00:35:48.960 --> 00:35:58.559
They are going off to college, and they know my son as funny, quirky, but it will get very obvious as one plans to go to medical school.
00:35:58.800 --> 00:36:06.719
I like to plan trips here and there are activities because downtime sitting around visiting doesn't work with my son who is 19.
00:36:07.119 --> 00:36:08.800
I think this is a really good question.
00:36:08.960 --> 00:36:21.519
I think holidays are tough for a lot of our loved ones and being around um what we think is maybe normal people and navigating and not feeling all that shame.
00:36:21.599 --> 00:36:22.960
So that's a beautiful question.
00:36:23.840 --> 00:36:33.119
I will take this one first because my son is the oldest, and I I will say to give you hope, it gets easier the older they get.
00:36:33.360 --> 00:36:36.480
You know, now we're all in a comfortable relationship.
00:36:36.719 --> 00:36:41.840
Nobody's trying to outdo the other one with where they're going to college or what job they got.
00:36:42.000 --> 00:36:48.480
So we have a mellow relationship with Jim and his cousins and aunts and uncles, and it's all very nice.
00:36:48.559 --> 00:37:02.800
But it was so hurtful when he was 18, 19, 20, 21, 22, 23, and we would be invited to all these grad parties and weddings and um and all of those things.
00:37:02.880 --> 00:37:06.079
And I just felt so sorry for myself.
00:37:06.159 --> 00:37:18.159
Uh often Jim wasn't even there, and I just I felt like I should wasn't very gracious about whoever was being celebrated and their family because I I was just madly jealous.
00:37:18.400 --> 00:37:24.559
Um but then Jim often has sits and doesn't talk.
00:37:24.639 --> 00:37:33.440
And so people, some relatives have come up to him and they try to strike up a conversation and then he doesn't answer.
00:37:33.599 --> 00:37:43.199
And then later he's yearning for someone to talk to him, but they've learned he's not going to answer earlier, even though he might talk more another day or another year.
00:37:43.519 --> 00:37:51.679
So um he's so lonesome even when we're in amongst a crowd with relatives, but it's gotten so much better now that he's older.
00:37:51.840 --> 00:37:55.679
Randy and Mimi's sons, I think, are more talkative than Jim is.
00:37:55.760 --> 00:37:57.519
So everybody's different.
00:37:58.000 --> 00:38:05.360
Yeah, my son is um when he's sober and in treatment, he loves to talk.
00:38:05.599 --> 00:38:26.320
So but I I will say I learned when when we were back, and everybody else's kids, everybody else's wonderful life, everybody else's, I remember, I remember waiting at the bus station, at the train station to welcome him home after he'd been homeless in Idaho.
00:38:26.480 --> 00:38:35.760
He was about 19, and I knew his diagnosis, and he signed a written contract, and you know, I sent him an Amtrak ticket because I didn't trust him to go to an airport.
00:38:35.920 --> 00:38:42.159
And, you know, anyway, I remember waiting at the train station, and it was like June.
00:38:42.239 --> 00:38:47.519
So all these parents like waiting for their kid to get home from American university with their graduation, you know.
00:38:47.599 --> 00:38:50.960
I mean, it was just like I hated them all at that moment.
00:38:51.440 --> 00:39:01.280
So um, you know, but uh I I the phrase I used to use when people didn't know our situation and they would go, Oh, how's Ben?
00:39:01.360 --> 00:39:01.760
How's Ben?
00:39:01.920 --> 00:39:06.880
I go, Well, you know, he developed a disability, so his path is a little bit different.
00:39:07.119 --> 00:39:09.039
And I just left it at that.
00:39:09.519 --> 00:39:12.159
And then no one expected, what college is he in?
00:39:12.239 --> 00:39:12.880
Is he married?
00:39:13.039 --> 00:39:18.159
You know, and and if they said what disability, I explained it, but most of the time they didn't ask.
00:39:18.320 --> 00:39:23.760
I just said he has developed a disability, so his journey's a little bit different, but he's doing well, thanks.
00:39:24.079 --> 00:39:24.719
Boom.
00:39:25.199 --> 00:39:34.320
And that actually helped me to um say, yeah, if my kid had Down syndrome, nobody would be like, Well, I used any, you know, getting A's in college.
00:39:34.480 --> 00:39:40.239
And so, sure, my son is capable of straight A's, but you know, that was just enough.
00:39:40.480 --> 00:39:47.440
It was like enough of it's like when kids want to know the facts of life, and you just tell them the baby grows inside the uterus, you don't have to say how it got there.
00:39:47.599 --> 00:39:50.639
Like it's you you tell them the whole story when they're ready to hear it.
00:39:50.800 --> 00:39:57.280
So that was a phrase that not only helped stop the conversation, but stop it with kindness.
00:39:57.679 --> 00:40:12.400
And so, um, and I will say, just going back to Tracy about group homes, that when my son he went into his first group home when he was 21, and because I wouldn't let them discharge him after five hospitalizations to me.
00:40:12.960 --> 00:40:23.519
And the social worker was shout out to social workers and psychiatric nurses and good doctors who do so much and often get underpaid.
00:40:24.159 --> 00:40:35.440
She pulled me aside after that meeting, and I thought she was gonna rip into me for not taking care of my child, and she said, I know that was so hard, and I applaud you for your decision.
00:40:35.920 --> 00:40:43.039
Do you know how many people in their 40s are just in and out of the hospital because they've been living with their mothers and they never learned how to grow up?
00:40:43.440 --> 00:40:52.800
And so her support meant the world to me at that time, and then it took a while to get a bed until he qualified for dual diagnosis.
00:40:53.119 --> 00:40:54.480
There's a little plus.
00:40:54.800 --> 00:41:04.639
But um, when he went into a group home and people would ask him how he is, and he was pretty stable on closer at the time when he was taking it, he you would cheat it a lot.
00:41:04.880 --> 00:41:08.159
But he would say, Oh, I live with a bunch of roommates.
00:41:10.159 --> 00:41:12.800
And you know, we don't allow visitors, but no, it's good.
00:41:12.880 --> 00:41:14.960
I'm going to college and I live with a bunch of roommates.
00:41:15.119 --> 00:41:17.199
So he found a way to make that palatable.
00:41:17.280 --> 00:41:21.920
It was still better, even at 21 years old, than saying, I'm living with my mom.
00:41:22.719 --> 00:41:24.320
So, um, yeah.
00:41:25.119 --> 00:41:27.199
So that's that's my answer.
00:41:28.960 --> 00:41:31.039
I love seeing all these hearts floating up.
00:41:31.119 --> 00:41:32.800
Thank you, whoever's doing that.
00:41:34.480 --> 00:41:35.119
Yeah.
00:41:38.079 --> 00:41:42.000
Uh we have another question in the chat by Bernadette.
00:41:42.320 --> 00:41:45.440
Would it have changed things if they were females?
00:41:45.599 --> 00:41:52.159
Also, my daughter has the frozen and time symptoms and is 30, but mentally maybe 13.
00:41:52.320 --> 00:41:58.400
She's on chloserol now for seven months, but it has not helped that symptom.
00:41:58.559 --> 00:42:02.639
I do not feel she can live outside of the home for this reason.
00:42:03.280 --> 00:42:04.559
Can I start an answer?
00:42:05.519 --> 00:42:05.679
Yeah.
00:42:06.000 --> 00:42:06.159
Okay.
00:42:06.239 --> 00:42:07.760
All right, Mimi, you go first.
00:42:08.159 --> 00:42:09.519
I'll I'll go real quick.
00:42:09.840 --> 00:42:12.960
You know, I I just want to quote what uh Dr.
00:42:13.119 --> 00:42:20.400
Leitman, who's the clause being guru and is our uh Mindy's son's doctor and also mine.
00:42:20.719 --> 00:42:24.480
You know, he says Mimi over and over for years.
00:42:24.800 --> 00:42:28.880
He says, Mimi, it's a marathon, it's not a sprint.
00:42:29.119 --> 00:42:31.920
She's been on clospine for seven months.
00:42:32.239 --> 00:42:35.039
It's hardly even starting, so hang in there.
00:42:35.119 --> 00:42:42.800
The clozepine is amazing and really can help in huge ways, but it's not fast.
00:42:43.280 --> 00:42:48.880
It takes a long time for these things to um to start changing.
00:42:48.960 --> 00:42:53.760
And the thing of seeming so immature, well, she's been sick for all these years.
00:42:53.920 --> 00:43:05.199
We have the same thing with our sons too, where it's like my son's kind of like emotionally where he was when he was 18 or 19 or 20, because they don't have the lived experience.
00:43:05.280 --> 00:43:11.360
They don't grow up, they don't go to college, they don't start handling all the things, they don't, they don't mature.
00:43:12.480 --> 00:43:16.800
So um, I don't know how much that changes or doesn't change.
00:43:16.960 --> 00:43:23.840
The way I've chosen to look at it and deal with it with my son is he's just like this beautiful little human being, you know.
00:43:23.920 --> 00:43:37.360
He's he's good and he has a lot of love and he's not hurting anybody, and and he's he's a beautiful human, it's just not the way that you thought it was going to be.
00:43:37.519 --> 00:43:43.599
And we need to also, okay, so maybe if she's like she is when she's 13 for the rest of her life, that's not the end of the world either.
00:43:43.679 --> 00:43:58.000
There's a lot of iterations of what it means to be human, and we're all so stuck on this idea of our kids being high achieving and doing all these things and making us proud.
00:43:58.079 --> 00:43:58.800
And you know what?
00:43:58.960 --> 00:44:05.679
If your kid was Born without legs, you wouldn't spend your life lamenting and pushing them to be a runner.
00:44:06.079 --> 00:44:12.400
You know, you would accept it and you would accept who they are and how they came to you.
00:44:12.480 --> 00:44:26.000
And I think that that's something that's really helpful for us at moms is loving who came to you because it's not, you know, our preconceived ideas mean nothing.
00:44:26.400 --> 00:44:27.920
I go ahead, I'm sorry.
00:44:28.159 --> 00:44:30.239
I love no, I love that so much.
00:44:30.400 --> 00:44:35.280
And you know, I have one blog post titled, This is who the universe gave me to take care of.
00:44:35.840 --> 00:44:42.480
So I and I don't know why, and I don't, you know, one of my phrases is I don't waste time asking why universe.
00:44:42.639 --> 00:44:44.639
I just go, it is what it is, now what?
00:44:44.719 --> 00:44:48.880
And you know, but of course, if if you have new grief, there's processing time.
00:44:49.119 --> 00:45:02.320
But regarding the female thing, what I know from being a family-to-family teacher and trainer is that generally, it doesn't sound like it's true for your daughter, but generally females come down with schizophrenia later in life.
00:45:02.559 --> 00:45:08.239
And so they're a little more open to going, oh mom, I might have schizophrenia, and then they accept treatment.
00:45:08.400 --> 00:45:26.159
And it's there are many superstar examples of females who who are managed with schizophrenia, not to say they never have problems, but um the later you get it, the better the prognosis because you've had all those years to grow up beforehand.
00:45:26.639 --> 00:45:39.840
So but but it doesn't sound like that's true for your daughter, but just so that you know, again, the prognosis is usually a little bit better for females, but when they got ill, is where they do get frozen in time.
00:45:40.320 --> 00:45:43.599
So um that's where she is, that's who she is.
00:45:43.760 --> 00:45:51.119
Other than the fact that it comes later with females, I don't know if it's any different for male or female, it's just your child.
00:45:51.360 --> 00:46:07.679
So and that's why I was so surprised about Jim schizophrenia, is because I was measuring him by my grandmother, a female, and she was married, had two kids, uh, you know, kind of established in life before she was diagnosed.
00:46:07.920 --> 00:46:09.440
And that made a huge difference.
00:46:09.519 --> 00:46:12.320
So she was stalled in time as an adult.
00:46:12.559 --> 00:46:23.119
But uh Jim also is, you know, he always is listening to music and wanting to watch movies from when he was a teenager or early 20s.
00:46:23.360 --> 00:46:30.639
So that's just how he is, and so I've come to um appreciate that and value it and love him.
00:46:30.880 --> 00:46:35.760
And we I like to watch old movies and watch listen to old music with him.
00:46:35.920 --> 00:46:36.880
We do that all the time.
00:46:37.039 --> 00:46:40.239
So I guess I'm partly stalled in time as well.
00:46:40.639 --> 00:46:46.559
Yeah, I mean, and there's moments I've come, you know, and I noticed a lot on the chat, there's a lot of back and forth about a group home.
00:46:46.639 --> 00:46:48.480
We're not saying you have to put them in a group home.
00:46:48.559 --> 00:46:50.159
Do what's comfortable for you.
00:46:50.400 --> 00:47:07.119
So if if it's working great having them live with you for nine years, my son lived with us, but it was just the hard part was just waiting for him to get home from work, me or my husband, so we'd get the meds down his throat and supervise them so he didn't throw them up and then I go, we bought another 24 hours.
00:47:07.280 --> 00:47:13.360
At that time, it was because we felt safe, we had a few laughs here and there, he was there for birthdays.
00:47:13.519 --> 00:47:16.000
So there's a time and a place for everything.
00:47:16.239 --> 00:47:18.639
So only you can make that decision.
00:47:18.880 --> 00:47:22.559
Um if a home is right, then a home is right.
00:47:22.639 --> 00:47:30.079
If a home is not right and you feel safe and it's fine and you you're able to caretake it, it's totally your own family's decision for sure.
00:47:30.480 --> 00:47:35.840
And I know a lot more families with a daughter who's living at home than a son.
00:47:36.159 --> 00:47:40.639
Sons sometimes tend to be more overt and it becomes more untenable.
00:47:41.360 --> 00:47:50.719
Well, and also the uh uh uh females, you know, they're more vulnerable to any sort of sexual predator or things like that.
00:47:50.960 --> 00:47:57.599
So, you know, you're certainly uh you know, the the the approach for protecting them is also a little greater.
00:48:01.280 --> 00:48:06.880
Okay, and then um I have uh a question from Victoria in the chat.
00:48:07.199 --> 00:48:15.280
What is a good resource to find the homes to send my adult sons that struggle with mental illness and addiction to marijuana?
00:48:15.599 --> 00:48:16.800
Good question.
00:48:19.840 --> 00:48:25.519
So if you're if you know the best, I live in Minnesota, so every mental health system is different.
00:48:25.679 --> 00:48:35.199
We have a really good one in Minnesota, but we have uh not we have huge waiting lists, but we have everything we any mental health system would want, just not enough of it.
00:48:35.280 --> 00:48:42.639
So there's waiting lists, and they're policed as to who gets anything by county case managers.
00:48:42.800 --> 00:48:46.559
We're like California, we have a county mental health system.
00:48:46.639 --> 00:48:50.320
So we have more counties in Minnesota than they have in California.
00:48:50.480 --> 00:49:02.079
We have 87, and each county has a different amounts of money and does things differently, but um, case managers in all cases determine who gets what.
00:49:02.159 --> 00:49:03.840
And if so, you really need to get one.
00:49:03.920 --> 00:49:06.639
And so we try to make it easy for people to get one.
00:49:06.800 --> 00:49:21.119
You can go to the library, the counties have office hours there and sign up for one, or you can call your county to see if we're how you can do it in your county or if it's state, then you need to go to the state agencies.
00:49:21.280 --> 00:49:25.360
But but getting services just as a family is very hard to do.
00:49:25.440 --> 00:49:31.039
If you have to work through a professional, and the sooner you get a professional, the better.
00:49:31.199 --> 00:49:35.679
And then they're you know vary in how adequate they are.
00:49:35.840 --> 00:49:44.079
So as a mother, I sometimes work circles around the case manager and they like it because I'm helping them do their job.
00:49:44.320 --> 00:49:55.440
A lot of the places Jim has gone, I have used my network and friends and Nami and everybody I can think of to find out what's the best of this, that, or the other thing.
00:49:55.599 --> 00:50:00.559
Jim's at in the best housing in the state, and that's because I did my homework.
00:50:00.800 --> 00:50:07.679
So you need a person that's a professional to get stuff, but you shouldn't rely on that because some of them are very overworked.
00:50:07.840 --> 00:50:15.119
Help out, ask everybody, go to veterans like us in your state and just beg for information.
00:50:15.599 --> 00:50:25.920
And NAMI support groups may have, you know, like on our podcast, we have several episodes about this, which you're, you know, you're welcome to check out.
00:50:26.159 --> 00:50:29.440
And I'm in the process of tagging them, and it's just a lot.
00:50:29.599 --> 00:50:44.159
I need a virtual assistant, but um, we do have episodes on just do a search on housing and conservatorship and social security in our 139 episodes, and you'll see some very helpful episodes about this.
00:50:44.800 --> 00:50:49.840
Um so, but but we're moms, we're not doctors.
00:50:50.000 --> 00:50:54.400
We can't tell you how to prescribe medication, we can't tell you if you should force medication.
00:50:54.559 --> 00:50:57.440
I see your your your question there.
00:50:57.599 --> 00:51:00.320
That is between you and your psychiatrist and your loved one.
00:51:00.480 --> 00:51:07.039
We're not we're not doctors, we are not psychiatrists, we're not psychologists, we're also not social workers.
00:51:07.760 --> 00:51:13.199
And in NAMI support groups and NAMI family to family, it's run by volunteers.
00:51:13.360 --> 00:51:20.719
However, when you are in as an OPLM support group, support happens and information happens.
00:51:20.880 --> 00:51:27.760
And you might meet someone, you know, in the chat room virtually or in the parking lot who goes like, I know of a group.
00:51:28.079 --> 00:51:34.079
Like the more you're out there talking to people in similar situations, you might get a lead that you can follow.
00:51:34.239 --> 00:51:37.280
As I said, there's always great parking lot conversations.
00:51:37.440 --> 00:51:39.119
And so there's chat conversations.
00:51:39.440 --> 00:51:43.280
And can I add also, you you can also get creative.
00:51:43.440 --> 00:51:46.159
What we've done with Nick is he's not in a group home.
00:51:46.320 --> 00:51:58.880
I got him in, and it took a lot of like finagling, but Nick lives in subsidized housing that is under the uh Washington State Department of Aging, actually.
00:51:59.039 --> 00:52:07.920
And I found out that folded into there was mental illness because they don't have uh they don't have any help for them in terms of housing.
00:52:08.079 --> 00:52:25.519
So Nick lives in housing that has a lot of old people, a few people like him who have mental health issues and are younger, but a lot of really nice old people who cater him and look out after him and are very sweet and it's very affordable.
00:52:25.840 --> 00:52:30.639
And then he has the county agency providing the caregiver.
00:52:30.880 --> 00:52:32.239
So it's not a group home.
00:52:32.320 --> 00:52:37.360
I sort of create, I I I like, you know, patch together my own group home.
00:52:37.519 --> 00:52:49.679
And and there's a lot of creative, so so get creative, you know, look at all the possible um possible avenues you can try because there's stuff there that maybe you wouldn't think would work, and then it does.
00:52:50.400 --> 00:52:50.880
Thank you.
00:52:51.039 --> 00:52:52.079
Thank you very much.
00:52:52.320 --> 00:53:02.639
And when you say find a professional, does that mean a social worker or somebody who are there people who actually you hire to do this stuff?
00:53:02.960 --> 00:53:05.119
Well, this they're government provided.
00:53:05.199 --> 00:53:08.239
And when I say a professional, I don't even mean a social worker.
00:53:08.400 --> 00:53:13.679
Most people get a case manager who has a lot less training than a social worker.
00:53:13.760 --> 00:53:20.800
If you're in the hospital, you might get a social worker, but in a county, you know, out in the field, you're more apt to get a case manager.
00:53:20.960 --> 00:53:25.199
So they're the ones that um really need your help.
00:53:25.519 --> 00:53:38.400
And I will say the three times my son found housing in group homes, the first two times was he was in the hospital and um I would not let them discharge him to my address.
00:53:38.960 --> 00:53:41.760
And so they kept him until they found housing.
00:53:41.920 --> 00:53:47.280
So it was the hospital social worker that found a group home for him both times.
00:53:47.599 --> 00:54:07.199
And uh the other time was sober housing, and that was um a little bit different, but he went to a crisis center and uh sobered up, and uh they got him into sober housing where he did very well for nine months until he decided life wasn't fun without cannabis, and so there's the ups and downs.
00:54:07.440 --> 00:54:15.679
So there are resources, and sometimes if your child is in the hospital, grab that situation because the iron is hot.
00:54:16.639 --> 00:54:21.519
You have the most power when they're in the hospital and you say no, they cannot come home.
00:54:21.679 --> 00:54:24.320
We have to work together to find a better place.
00:54:24.639 --> 00:54:25.199
Right.
00:54:28.559 --> 00:54:31.519
So we have another question from Debbie's phone.
00:54:31.679 --> 00:54:35.599
It says, How do you respond when you get asked, How are you?
00:54:37.679 --> 00:54:46.320
I'm pretty open because I was a legislator, I've been on lots of media, so most all of my friends know I have a son with schizophrenia.
00:54:46.400 --> 00:54:48.000
So I don't have to say much.
00:54:48.239 --> 00:54:55.360
I just say, Jim's doing well, so I'm doing well, or things have been better, or I could be better.
00:54:55.760 --> 00:54:57.840
And that's really all I have to say.
00:54:57.920 --> 00:55:00.000
And then that's often all they want to hear.
00:55:00.079 --> 00:55:04.320
And then your really good friends who really know want to hear more.
00:55:04.480 --> 00:55:07.679
But I OD'd one of my friends when Jim was first sick.
00:55:07.840 --> 00:55:14.800
We had an afternoon, she invited me over for lunch and we were talking, and I'm sure she wanted to talk about something besides Jim.
00:55:14.880 --> 00:55:21.199
But I was new to Jim being sick, and I talked and talked and talked, and she seemed interested.
00:55:21.360 --> 00:55:24.719
But I, you know, she's the one person that we're no longer friends.
00:55:24.800 --> 00:55:29.280
She's just didn't ever call again because that was too much for her.
00:55:30.159 --> 00:55:32.800
And usually I give a short answer.
00:55:33.039 --> 00:55:36.559
Yeah, that's gonna happen with people, and you know what?
00:55:37.599 --> 00:55:38.320
So be it.
00:55:38.480 --> 00:55:42.079
You know, you know, you're not made to be friends with everybody.
00:55:42.239 --> 00:55:59.360
I remember there was a time like when Nick was first sick, and my world was just spinning out of control, and I was actually at a party, and somebody in the kitchen said to me, So, how's go, you know, how are things with Nick?
00:55:59.440 --> 00:56:02.480
And it was a bad time to ask me that question.
00:56:02.719 --> 00:56:08.480
And I told everything, and by the time I finished this story, I was telling her what was happening.
00:56:08.639 --> 00:56:11.519
Literally, everybody left the party.
00:56:11.760 --> 00:56:15.519
And I said to my friend, Boy, I may have a new career as a party clearer.
00:56:15.840 --> 00:56:22.559
Anytime that people are staying too long, just ask me how you're doing, and that'll take care of it.
00:56:22.719 --> 00:56:26.400
But I do really, I mean, I'm just very upfront about it.
00:56:26.480 --> 00:56:27.679
I don't hide anything, you know.
00:56:27.760 --> 00:56:30.159
I mean, I don't tell everybody everything either.
00:56:30.320 --> 00:56:30.719
But you know what?
00:56:30.880 --> 00:56:41.360
If they can't handle it, and if they can't, you know, be my friend because my son has schizophrenia, and I don't want to pretend that's not true, I don't want that person.
00:56:43.039 --> 00:56:53.199
And and I will say occasionally I burst into tears, and those people didn't dare ask again either, because for fear they were gonna have that happen again.
00:56:54.000 --> 00:56:58.159
My answer is generally most things are great.
00:56:58.320 --> 00:57:02.159
One thing is really challenging, but I can I compartmentalize.
00:57:02.239 --> 00:57:04.239
And and usually that's enough.
00:57:04.400 --> 00:57:08.000
And you know, if if someone doesn't know me very well, they go, Yeah, that's life, isn't it?
00:57:08.079 --> 00:57:08.639
And I move on.
00:57:08.719 --> 00:57:12.880
It's like if it's a really good friend, that you know, it depends on who the friend is.
00:57:12.960 --> 00:57:14.480
If someone at work is like, how are you?
00:57:14.559 --> 00:57:17.840
I'm not gonna go, well, I had a cold and my son's homeless.
00:57:18.000 --> 00:57:18.400
How are you?
00:57:18.559 --> 00:57:22.320
Like, I'm not gonna, I'm just gonna say, you know, and it's true, you know what?
00:57:22.559 --> 00:57:25.360
Most things in my life right now are great.
00:57:26.000 --> 00:57:30.639
Uh, you know, I'm I'm writing a solo show, it just got booked into two theaters.
00:57:30.800 --> 00:57:31.840
I love my job.
00:57:32.079 --> 00:57:36.800
My daughter and her husband are doing well, my grandkids are about to go off to summer camp.
00:57:37.039 --> 00:57:39.360
My husband cooked me dinner tonight.
00:57:39.440 --> 00:57:41.760
Like, you know, there's a lot of really good things.
00:57:41.920 --> 00:57:45.679
And so my short answer is most things are great.
00:57:45.840 --> 00:57:48.639
You know, I'm very good at compartmentalizing if they ask more.
00:57:48.719 --> 00:57:52.880
And I say, you know, one thing is really challenging, but I still have hope.
00:57:54.000 --> 00:57:56.159
And I'm doing or I'm doing all I can.
00:57:56.400 --> 00:57:57.199
We'll see what happens.
00:57:57.360 --> 00:58:01.039
Like, I just give them a short answer because they don't want the whole story.
00:58:01.360 --> 00:58:08.639
And I bet every single of the over 50 participants here can find one good thing about their lives right now.
00:58:09.920 --> 00:58:15.440
And so, you know, not everything, you know, we're not meant to be happy all the time, 100% happy.
00:58:15.519 --> 00:58:20.880
Life is a series of many, many experiences and feelings and emotions.
00:58:21.119 --> 00:58:26.159
And we're all parents, and that is particularly hard on the heart when someone we love.
00:58:26.400 --> 00:58:31.039
But I refuse to believe I can only be as happy as my unhappiest child.
00:58:31.119 --> 00:58:36.880
I won't do that to myself, and I won't do that to the rest of my family or the rest of the world.
00:58:37.119 --> 00:58:42.880
I still tell funny stories, I still do comedy, I still have fun.
00:58:43.599 --> 00:58:47.599
Um, you know, life is a life is a mosaic.
00:58:47.920 --> 00:59:02.800
So, which doesn't mean I'm not gonna fight like, don't, you know, don't think I don't care, and don't think I don't cry at the red lights, and don't think, you know, every time there's a new blow or a new situation that, you know, he left the crisis center a week ago.
00:59:02.960 --> 00:59:05.679
You know, I'm gonna have a couple of sleepless nights.
00:59:05.920 --> 00:59:12.559
And then you sort of process the pain and you compartmentalize it and do what you can and and move on.
00:59:12.719 --> 00:59:13.920
But that's my short answer.
00:59:14.079 --> 00:59:15.360
I go, most things are great.
00:59:15.440 --> 00:59:16.559
Thanks for asking.
00:59:17.199 --> 00:59:18.880
Usually that's enough.
00:59:21.760 --> 00:59:30.480
You know, there's a question here in the um in the questions that I think is something maybe uh we should address because it's really important.
00:59:30.800 --> 00:59:46.320
It's by somebody named Jantum, J-A-N-T-O-M, and it's about uh coordinating with your partner in parenting kids like this when you don't agree on how you should be doing it.
00:59:46.559 --> 00:59:54.400
And I think that's something that we that's we all deal with, and it's so difficult.
00:59:54.559 --> 01:00:02.159
I mean, I don't have great answer, except that it is really important to address it and figure out some solution.
01:00:02.320 --> 01:00:08.800
This person is saying, um, I'm finding it very tricky because we don't agree on what we should and should not be allowed for our son.
01:00:09.039 --> 01:00:10.400
I don't think so.
01:00:10.639 --> 01:00:30.480
She goes into you know what she thinks, what he thinks, and and you know, um, I would say if there's a way to get some sort of counseling help for just the two of you, independent of your son, to try and get close to the same page in the same book.
01:00:30.719 --> 01:00:35.599
I mean, you know, this destroys marriages, and it's a big deal.
01:00:35.679 --> 01:00:59.599
It's not a hard, it's not an easy thing to resolve, but I think that if there's any help to be found for it, you know, some sort of therapy and talking to to figure out is important because I think it's also then so important for the kid that you that you're both moving in the same direction because for their for their um mental health and recovery and all of that.
01:00:59.760 --> 01:01:03.119
Um Randy and Mindy, what do you guys think about this?
01:01:04.000 --> 01:01:18.159
Yeah, I mean it's it it's very it's uh it often when I have taught family to family, couples come in together, and there are different stages of acceptance and different stages of recovery, and you gotta be where you are.
01:01:18.400 --> 01:01:21.519
And so there's space for everybody to be where they are.
01:01:21.679 --> 01:01:26.719
But often I will see as they learn more that they begin to get on the same page.
01:01:26.880 --> 01:01:32.880
But you can also see the rift between them at the beginning when one is still going, why can't he just snap out of it?
01:01:33.039 --> 01:01:38.000
And the mother's going, but we have you know, so it can rip families apart.
01:01:38.079 --> 01:01:58.719
So if there's a way with therapy or support groups, or I don't know in your support groups at OPLM how many are couples that come, or if it's just one, but the you know, the more you can not try to change each other's mind, but try to find to be in the same book, like all right, what can we agree on to do together that's the best for this family?
01:01:58.880 --> 01:01:59.599
What's your idea?
01:01:59.760 --> 01:02:00.559
What's my idea?
01:02:00.800 --> 01:02:09.119
And then uh, because you know, one thing we learn about divisions, nobody changes anybody's mind, but the more we learn, we can be flexible.
01:02:09.360 --> 01:02:11.519
So um I would add that.
01:02:11.760 --> 01:02:18.559
And in my family, um, my husband always lets me take the lead because I did have do have mental illness in my family.
01:02:18.719 --> 01:02:25.920
I minored in psychology because of it for both my MA and uh my uh and my BA.
01:02:26.400 --> 01:02:46.079
Uh so we haven't had that issue, but I know one family that I that's in my five mom swoop right now, and she wanted to get more help for her son, and her husband was kind of like Randy said, you know, thinking he could work, he could um, and people with schizophrenia do work.
01:02:46.239 --> 01:02:52.639
My son works, and Randy's, as she talked about, worked, but um, but but the husband was kind of in denial, I think.
01:02:52.800 --> 01:03:03.920
And what it resulted in over the last few years is the son didn't get the help that he needed, and neither did the family, because they weren't asking the case, they didn't have a case manager.
01:03:04.079 --> 01:03:08.480
They weren't the husband didn't think it was that it that it would come to that.
01:03:08.639 --> 01:03:26.320
And so now just this month, they finally have an act team, they have medical assistance, they have SSDI, they had none of those things, and the son is you know 33 or 34, so it's denying of help for him and for the family.
01:03:26.400 --> 01:03:32.239
They had no uh support other than from people like me because of the disagreement.
01:03:32.320 --> 01:03:34.639
So it's really important to get it under control.
01:03:36.239 --> 01:03:38.639
And listen, ladies, we're mostly women here.
01:03:38.719 --> 01:03:47.599
I don't know about the audience, but we all know you go to the support group meetings, you go to the nominee meetings, it's 85-90 percent women.
01:03:48.159 --> 01:04:00.159
This particular dynamic in life of this awful thing happening to your kid, women and men, mothers and fathers are very different in how they deal with it, and men have a hard time.
01:04:00.239 --> 01:04:24.880
And I apologize to any men in her year and are taking offense by this because I don't, you know, I'm not saying everybody, but I mean there is a definite division, and the men, especially with their sons, they see themselves in their sons, they they can have anger towards their sons, they think that we're being too lax with them or too strict with them or whatever.
01:04:24.960 --> 01:04:33.280
But I think a lot of it is men dealing with their sons as a reflection of themselves and trying to make peace without and come to terms without.
01:04:33.519 --> 01:04:40.559
My husband, for years, was like, you know, he would say when push came to Chef, he would come, he would say, Oh, I don't even believe he's really sick.
01:04:40.719 --> 01:04:42.400
I think he's crazy like a fox.
01:04:42.480 --> 01:04:46.960
He's just figured out a way to never have to work again.
01:04:47.039 --> 01:04:48.639
You know, he's just lazy.
01:04:48.719 --> 01:04:51.199
And I mean, it sounds so horrible.
01:04:51.440 --> 01:05:04.079
And I mean, my husband and I are still, you know, we're together, and I love my husband, and he's a good father and loves his son, but it's a very different psychological profile, and men need a different kind of help with this thing.
01:05:04.159 --> 01:05:05.760
It's a big thing for men.
01:05:06.320 --> 01:05:07.519
Probably get pushed back to the other.
01:05:07.760 --> 01:05:12.719
I know we're I know we're we're um yeah, I I know we're starting to run short on time.
01:05:12.880 --> 01:05:18.000
I just want to address something I'm seeing about the group homes in the chat, which is about the expense.
01:05:18.159 --> 01:05:23.119
And I will say personally, my son's group home was covered by Social Security and Medicare.
01:05:23.360 --> 01:05:30.559
Um, you know, again, if if your child is not yet on on disability, we have episodes about how to make that happen.
01:05:30.800 --> 01:05:33.519
It depends, you know, some of them aren't ready.
01:05:33.679 --> 01:05:41.760
Um, but at the time that my son was in a group home at 21, it was Medicare, Medicaid, and Social Security that covered his group home.
01:05:41.920 --> 01:05:44.400
So there are private ones and they're probably better.
01:05:44.480 --> 01:05:45.519
I'm not gonna lie.
01:05:45.679 --> 01:05:49.119
You know, there are great group homes and they're more expensive.
01:05:49.280 --> 01:05:58.559
But if you do your, you know, do your research, do your education, ask people, you might find those that are covered by state funding, depending on where you live.
01:05:58.719 --> 01:06:01.280
So that's just Ditto and Minnesota.
01:06:01.360 --> 01:06:04.960
And I don't know that of any private group homes, actually, if there are any.
01:06:05.039 --> 01:06:17.039
I don't know where I've never heard of them, but because the public ones are as good as anything, I always advise people do not bankrupt yourself in the early years trying to save your family member.
01:06:17.360 --> 01:06:19.440
Go straight to getting all you can publicly.
01:06:19.599 --> 01:06:21.760
If you're in a terrible state, that might be different.
01:06:22.000 --> 01:06:29.760
Minnesota, we have a really good system and you just have to find out about it because you might be the only one that really is looking.
01:06:30.000 --> 01:06:35.440
But once you do, um, it's free and it's good if you can get into it.
01:06:35.519 --> 01:06:37.599
It's the waiting list that are killers.
01:06:44.960 --> 01:06:53.840
Okay, so I do just um want to ask one last quick question for people to kind of round this off.
01:06:54.400 --> 01:07:04.960
Um what do you think is one of the best forms of self-care for all of these struggling parents?
01:07:05.440 --> 01:07:09.039
If you could leave them with one positive message.
01:07:10.079 --> 01:07:12.960
It's not a bubble bath, at least not for me.
01:07:16.079 --> 01:07:21.199
It is appreciating the good moments when they come.
01:07:22.639 --> 01:07:31.039
It is um and that good moment could be just something that's ordinary that everybody else takes for granted.
01:07:31.679 --> 01:07:36.800
It's finding ways to honor your own ways of finding joy in your life.
01:07:37.039 --> 01:07:44.320
For me, it's being with other people, going out to a restaurant, seeing a movie, seeing theater, being in theater, doing something creative.
01:07:44.719 --> 01:07:54.719
Um don't ignore the other people in your family for the sake of somebody that you're not able to save right now.
01:07:54.880 --> 01:07:57.440
Like hopefully you're I don't know.
01:07:57.599 --> 01:08:03.519
I mean, the family may you may be a single parent with just one kid and he's your everything, and you know, everybody's different.
01:08:03.599 --> 01:08:14.239
But I would say uh honor the ordinary, learn all you can, find things that give you joy or contentment and do them.
01:08:14.480 --> 01:08:20.960
And if you feel guilty, say, I'll take care of you later, I'm taking care of me now.
01:08:22.399 --> 01:08:39.119
For me, it's family and friends, and especially friends in NAMI or anywhere where people are in the same boat as you, so they can you can commiserate and really talk and really help each other.
01:08:41.039 --> 01:08:48.399
Yeah, I think it's kind of uh what uh Randy mentioned earlier, too, something I really believe is compartmentalizing too.
01:08:48.560 --> 01:08:54.720
I mean, that's part of what I was saying about acceptance, is like I can set this aside.
01:08:55.119 --> 01:09:05.119
I can set aside that Nick is sick, that I have a son with schizophrenia, and I can go to a party for a few hours, or I can take a trip, or I can do something.
01:09:05.439 --> 01:09:07.199
I grant myself that.
01:09:07.359 --> 01:09:11.199
I grant myself, I call it the the set-aside rule.
01:09:11.359 --> 01:09:13.439
I get to do that, I get to set aside.
01:09:13.520 --> 01:09:17.199
I don't have to be grieving every moment of our life, my life.
01:09:17.279 --> 01:09:30.880
And I'll tell you something, there's something in our culture right now that you know comes right after this thing of everybody's preoccupation with self-care, which I think is good and it's important, but there's also everyone's in love with grief all of a sudden.
01:09:31.039 --> 01:09:38.079
All we're doing is talking about grief, grief, grief and how we live with it and how we can't, and it's almost like we're falling in love with the grief itself.
01:09:38.239 --> 01:09:39.760
I'm not in love with the grief.
01:09:39.920 --> 01:09:43.359
I understand that the grief is the price you pay for love.
01:09:43.600 --> 01:09:52.960
The grief is the price you pay for having importance and things of meaning in your life and for loving people and for having those connections.
01:09:53.119 --> 01:10:03.119
So we all have to deal with that, but we're also allowed to put it aside and just like run through the grass a little bit or something.
01:10:03.920 --> 01:10:04.560
I think.
01:10:04.960 --> 01:10:10.479
For for me, having those people that I really talk to allows me to have the rest of my life elsewhere.
01:10:10.560 --> 01:10:18.960
I just came from a week and a half in London with my granddaughter, and we really didn't think about uh Jim at all, other than to call him a couple times.
01:10:20.079 --> 01:10:24.399
But I like I need those people to anchor me and then I can go free.
01:10:29.279 --> 01:10:30.159
I love that.
01:10:30.399 --> 01:10:34.399
And one quick question before I close, someone I think this is important.
01:10:34.560 --> 01:10:39.039
They asked, is NAMI are NAMI support groups available for Canadians?
01:10:40.159 --> 01:10:44.479
Virtually, perhaps, but Canada must have their own version, do they not?
01:10:46.239 --> 01:10:46.880
I don't know, man.
01:10:47.119 --> 01:10:47.520
I don't know.
01:10:47.920 --> 01:10:49.600
I can Google it right now.
01:10:51.680 --> 01:10:55.039
Um, I just saw somebody answer.
01:10:55.359 --> 01:10:57.279
NAMI is US only.
01:10:57.680 --> 01:10:58.399
Oh, there you go.
01:11:03.439 --> 01:11:04.640
Okay, well, that was good knowledge.
01:11:04.720 --> 01:11:06.079
I wanted to make sure people heard that.
01:11:06.319 --> 01:11:13.359
Yeah, I think we all we all um support people doing that family-to-family program.
01:11:13.520 --> 01:11:15.279
It's a game changer of NAMI.
01:11:15.600 --> 01:11:20.880
Well, it's funny, I just saw NAMI Family to Family Programs Ontario.
01:11:21.920 --> 01:11:25.039
And it's F2F Ontario.ca.
01:11:26.640 --> 01:11:29.680
So, and there's NAMI Vancouver Island.
01:11:29.840 --> 01:11:36.800
So maybe it's US only, but I would do a Google search on NAMI Canada and see what happens.
01:11:38.560 --> 01:11:38.960
Excellent.
01:11:39.199 --> 01:11:45.039
Maybe there's just family to family, but it there's a it's so helpful.
01:11:45.680 --> 01:11:48.960
The NAMI project, the NAMI project.ca.
01:11:49.439 --> 01:11:50.800
I don't know if it's the same NAMI.
01:11:51.119 --> 01:11:52.800
Oh, it's an oceanfront luxury.
01:11:52.880 --> 01:11:53.760
Never mind.
01:11:54.880 --> 01:11:55.920
Well, that could help.
01:11:56.159 --> 01:11:59.039
But you know, Google it because you might find something similar.
01:11:59.279 --> 01:12:00.560
You might find something.
01:12:00.800 --> 01:12:01.359
Perfect.
01:12:01.520 --> 01:12:03.600
Well, thank you so much, everyone, for being here.
01:12:03.760 --> 01:12:09.119
Thank you to Mimi, Mindy, and Randy, and for Shireen for being a wonderful co-host.
01:12:09.279 --> 01:12:13.119
Um, Shireen already put their contact information in the chat.
01:12:13.279 --> 01:12:19.119
And just so you know, you can click on the three dots in the chat and it'll save the chat for you.
01:12:19.359 --> 01:12:23.840
So if you click on the three dots in chat, it'll then you click on save chat.
01:12:24.079 --> 01:12:27.279
Wow, it will download it to your computer.
01:12:27.439 --> 01:12:27.840
Yes.
01:12:28.000 --> 01:12:36.399
So it's a great way to save the questions, the answers, and also um all of the resources that have been put in here.
01:12:36.560 --> 01:12:38.159
Um, again, thank you for joining us.
01:12:38.239 --> 01:12:42.319
Whether you're live or catching the recording in our resource hub, we really appreciate it.
01:12:42.399 --> 01:12:52.399
If you would take a moment to complete our exit survey, your feedback really helps us improve and gives us ideas for um future speaker topics.
01:12:53.520 --> 01:13:05.920
If you haven't yet considered starting a trial or joining as a member to keep accessing these valuable resources, as many of us have learned along our journey, when we have support, we're better equipped to show up for our kids.
01:13:06.079 --> 01:13:12.000
Visit oplm.com front slash join to find a group that fits your needs.
01:13:12.239 --> 01:13:24.720
Next week, we're joined by Debbie Murad, founder and clinical director of Beach Cities Gateway for a thoughtful conversation about connections, belonging, and the challenges facing today's youth.
01:13:24.960 --> 01:13:44.880
In Alone Together, how screens are fueling teen loneliness, and what we can do about it, Debbie will explore the factors contributing to rising feelings of isolation among teens and young adults and discuss how families can help foster stronger relationships, emotional well-being, and a meaningful connection.
01:13:45.119 --> 01:13:50.960
Join us as we examine what young people need most to thrive in an increasingly complex world.
01:13:52.000 --> 01:13:52.399
Great.
01:13:52.560 --> 01:13:54.720
Again, thank you so much for being here tonight.
01:13:54.880 --> 01:13:58.239
I hope you found the conversation insightful and helpful.
01:13:58.319 --> 01:14:00.560
And thanks again, Shireen, for being here.
01:14:00.640 --> 01:14:01.920
And hope to see you.
01:14:02.000 --> 01:14:07.359
Um, if you're not members, we'd love to see you in our meetings um or on another future speaker talk.
01:14:07.920 --> 01:14:08.720
Thank you, everyone.
01:14:08.800 --> 01:14:09.439
Have a good night.
01:14:10.560 --> 01:14:11.359
Thank you, Mill.
01:14:11.840 --> 01:14:12.479
Bye.
01:14:14.399 --> 01:14:19.760
Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches.
01:14:19.920 --> 01:14:28.319
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01:14:28.640 --> 01:14:36.800
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