Ask the Moms - Listeners are the Guests (Ep. 90)

In this episode, listeners tell us what's on their minds and we answer as best we can.  We talk about anosognosia, incarceration, psychotic delusions, what we would have done differently if we'd known then what we know now, and lots more.

We open with a poem by a listener who is diagnosed with SZ:
Dale Walsh Poem - “I am a recovered reaching out help lessen the challenges encountered by family caregivers”

Source Of My Unique Thinking

Seeing laughter from challenged kid

Reminds me of all things I hid

About everything I did

And Joke I made was big mistake

As claim "I'm GOD" I did make

Which at last turned out to be fake

Though reason I sought out Godhead

Was due to a great sense of dread

I felt knowing I will be dead

At least physically one day

And so I found alternative way

To fight my body's slow decay

By saying I shall live forever

And pass into next life never

Not ready Earth ties to sever

So now I am guided by Lord

Who's my integrity restored

The ONE Whom I always adored.

4/28/24

National Poetry Month

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

Randye and her book: https://www.randyekaye.com/

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

Transcript

Copy Transcript Copied

SPEAKER_02 0:00

Question for the three moms. Knowing what you know about meds, do you feel 100% comfortable influencing your loved ones to take meds? Another question. My schizo-affective son is incarcerated and has anasygnosia, so he refuses medication. Is there any advice from me? Another question. I live in a small town. The mental health help is nearly non existent. What can I do? These and more are the questions we answer tonight from listeners of our podcast. 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. Well, welcome to our second ever Ask the Moms episode. This is episode 90, and we have guests here who are listening in, and we have no agenda other than to answer your questions as best we can. So I welcome you. I'm Randy Kay here with Miriam slash Mimi Feldman and Mindy Gryling. We're three moms with three sons with schizophrenia. We've written three books about it. Mindy's is Fix What You Can. Mimi's is He Came In With It. And mine is Ben Behind His Voices. And we're here to tell it like it is. And we so, so appreciate all of our listeners and our viewers. And we have past 160,000 downloads now and nearly 2,000 subscribers on YouTube. And that is thanks to you. And thank you for spreading the word. We are hearing from people who have just discovered us, and that's because of you sharing what we do. So I really do appreciate that. Thank you. Um before we open it up to questions, just gonna do a quick update of the moms. And I think Mindy, let's start with you because you have two pieces of news to share, right?

SPEAKER_03 2:05

Yes, we're going to have a program later on the clubhouse that I've been uh leading the effort to start. But I just want to announce tonight that today we had our opening. So I am if I feel like I'm on the top of the ceiling, that is why, because it's taken us three years. And then secondly, Jim, uh, my son, was on, uh was interviewed, it hasn't aired yet for Minnesota Public Radio. And it's also going to be on National Public Radio for May Mental Health Awareness Month. And he did a wonderful job doing it, just like uh Mimi's son Nick did when he was interviewed for national television a while back. Jim is not um in the caliber of the guests we had last week, where we had people who were teachers and social workers and, you know, really um professional things because they have like super recovered. But Jim is considered right now recovered. Um, but I think there's different levels of recovery. But I'm I'll let you all know when it airs. I was so excited that he did such a good job, and the reporter was incredible relating to Jim.

SPEAKER_02 3:21

That's wonderful. Congratulations on both counts. That's super excited. And I I will say that we got so many good comments on our episode last week because we did feel honored by Bethany Jeiser and three other people in the book Awakenings, who are, as Mindy said, super recovered. You know, they have master's degrees, and and a lot of people especially appreciated our reaction of both congratulations, but also hold on, this doesn't speak for everyone, because our sons are recovering at a different level, shall we say, so far. And so people are suggesting perhaps we could do an episode about sort of medium recovery, because I used I would say that when my son was at his best since his diagnosis, I used to say, I've got him back 65%. And that's just gonna have to be good enough. 65% is better than 0%. So I don't know what the percentage is these days, but I think that is a valid point. And I'm I'm glad that we brought it up, that Mimi asked the question, and we acknowledge that maybe not everybody with schizophrenia until they find a cure, until there's a lot more treatment. Maybe not everybody can recover to the extent that our beautiful guests last week did, but you never know. And we we do want to hope. And but if not, there is still value in the recovery that looks like hey, I can't hold a job, but I'm there for my mother's birthday. Like, you know, there is there's all kinds of recovery. So thank you. I'm I'm really glad to spotlight that. Uh for my part, today's my son's birthday. It's Ben's birthday, and at as a birthday present, he got moved to jail diversion yesterday. Oh so we are, I mean, I'm more excited than he is. He's kind of like, oh, I've got to go to three meetings a day, you know. So if you don't know what jail diversion is, it's a program he had to qualify for, which is a more or less of a treatment center, case management center. And it's his job to follow all the rules, including sobriety. And uh fingers crossed that he does that so that his record can be cleared. It's kind of his uh it's a big chance for him. He's very excited to have a pillow, and because I guess you can get pillows in jail, but it costs money, and the commissarian people take them. So, anyway, he's excited to have a pillow, and I went shopping at CBS for things for him, and I'm going, I won't see him for two weeks, but we're very excited that they finally a bet opened up. So that's kind of our big news. Mimi, how are things with you?

SPEAKER_00 6:21

Everything's fine. I got nothing. Let's get to our people.

SPEAKER_02 6:24

Come on, all right. So I do want to say one more thing, and that is that I've been corresponding with a lovely young man who has schizophrenia, and his name is Dale, and he did want me to use his full name, Dale Walsh. He he would like to be a guest sometime, and when we do our next recovery, perhaps he will. But I want to share a poem that he wrote because he wrote it to me, and there's all kinds of talent in the world of people who have schizophrenia. And he wanted to share what it feels like to him to be challenged with this illness. So, with your permission, it's very short, I'll just read it. Dale describes himself as recovered, reaching out to help lessen the challenges encountered by family caregivers. So here's the poem. It's called Source of My Unique Thinking. Seeing laughter from challenged kid reminds me of all things I hid about everything I did. And joke I made was big mistake, as claim I'm God I did make, which at last turned out to be fake. The reason I sought out Godhead was due to a great sense of dread I felt, knowing I will be dead, at least physically one day, and so I found an alternative way to fight my body's slow decay by saying I shall live forever and pass into next life never, not ready, earth, that ties to sever. So now I am guided by the Lord, whose my integrity restored, the one whom I always adored. So it's his way of saying this is how he's found a way to cope. And that it seems to me that he used to cope through some delusions and now he's found some faith. And Dale, thank you, and we wish you well. Thank you for sharing your poetry with us. All right, well, welcome everybody. If you are just joining us, this we are mid-episode 90, and thank you for joining the three moms. And we are here to answer your questions. Should we start with the first question that's in the chat? So the first question is from Lynn, who and a lot of people want to know about anosygnosia, which, if you aren't familiar with it, is the lack of insight that you have an illness and one of the biggest problems with schizophrenia. So Lynn wants to know if your loved one suffers from anosygnosia, which mine does, what has worked for you to get them to agree to see a doctor and take medication? And she adds that she doesn't have the heart to make it a requirement for her to live in the house. So that's a tough one. I will start by saying you can't make anybody do anything. I highly recommend that you check out the episode with Dr. Amador with his leap method, which has to do more with they're more willing to take medication out of love than out of being made to do it or forced into it. My only two things are for me, I did make it a house rule for the sake of the rest of my family. We'd love to have you live with us. If you want to live with us, this is this is the only way it's going to happen. And so that worked for us for nine years until it didn't work anymore. We're we're not allowed to make our loved ones take medication. But sometimes through love and through house rules, we can get lucky for a while. That's what I would say. Uh, Mindy, Mimi, anything to add?

SPEAKER_03 10:26

I would I would add in that um Jim does not have anasygnosia now, but according to the Treatment Advocacy Center, 60% of people with schizophrenia have it and 50% of people with bipolar disorder, that's higher than I had seen. I had thought it was 50 and 40, but this is more recent. Um, so it's a big problem. With Jim, we did say that he couldn't um live with us after we had had no success getting him to take his medication. And then he did live elsewhere. But um, what what really saved him? I think he would be dead now, but we actually had him civilly committed. Jim's been civilly committed seven times. So we cannot, as parents, mothers, and fathers, make our loved ones do anything. Jim is, you know, 6'4 and strong. And uh physically, you know, I've tried to look under his tongue and all those kinds of things. But in the end, um he had delusions that he needed to kill me. Um we were afraid, both for ourselves as well as for him. He's had um three suicide attempts. So, in order to save him, we had to resort to um civil commitment, assisted outpatient treatment. And um, if you have someone who isn't taking their meds and they're in danger of suicide or hurting someone else, Jim was also burning himself repeatedly in the same spot on his arm. It was shocking uh what we were going through with him. Um I think that it's very legitimate to look at assisted outpatient treatment, civil commitment. Bethany Iiser, who was our guest last week and is doing well now, had anasygnosia. She talked about it. Check out that episode. She um spoke highly of assisted outpatient treatment for herself, and so has uh a previous guest named Eric Smith. So I wouldn't um rule that out if you're having no success and your person's living on the edge.

SPEAKER_02 12:40

Thank you. And if it's available in your state, uh Mimi.

SPEAKER_00 12:44

Yeah, I'd like to speak to the people who have younger uh loved ones. When um Nick first got sick, he was young. I mean, he was 16, 17, he was still in the house. And I remember uh he like, you know, he had ancygnose and he wouldn't take his meds. And I remember a conversation with the doctor where I kind of sheepishly asked him, Well, would it be really terrible if I paid him to take the meds? And this doctor said to me, you know what? All bets are off. Everything you think you know about parenting is off the table. Do whatever you can to get the medication in them, which can hopefully bring them to a point of some lucidity where then they can start to understand. So, um, and you know, I remember standing around the butcher block table in my kitchen with my younger girls there, giving Nick a $10 bill as he took his medicine, and them looking at me like it was the most appalling thing they'd ever seen in their life. Nobody had ever paid them to take their amonxicillin, and they couldn't understand how or why I was paying him to take his meds. But um, it really helped in the beginning because it got him to a point of stabilization. So I would just say, in my humble opinion, to moms out there who are still laboring under the rules of normal parenting, we're not there anymore. We're in a whole different world. Do whatever you can. And I found with Nick, even now at 38, that incentive bribing works really well.

SPEAKER_03 14:26

And I just noticed somebody followed up in the chat and to ask if we saw a gradual transition to self-awareness from anasygnosia. And we definitely did with Jim. He, the more he got better, the more his mind was able to heal from his medications, the more insight he has. But like I said, um, you know, quite a few people never get there.

SPEAKER_02 14:52

Okay, thank you. And we do have quite a lot of questions about anosygnosia. And I have not seen it yet. In fact, my son called his sister and called me to say, to get into this jail diversion program, are they going to ask me to say I have schizophrenia because I don't have it? What do I do? And I said to him, Because a long ago, one of my mantras to myself is it's not my job to convince him he has an illness. Not only is it not my job, I can't do it. Anything I I don't know how it is with you. I'm assuming there are a lot of parents here, but there may be siblings and other people. So I, you know, I I feel you. But convincing someone they have this illness is beyond what most of us can do. Uh, also, my son is a Taurus, as you know, his birthday is today. And anything mom says takes twice as long for him to realize if it comes from mom. So there's that. So I have to bite my lip. Even now, I do bite my lip because for the nine years he lived with us after he was hospitalized between the ninth and tenth hospitalization, the nine years he lived with us when he was doing well, we just said, this is the price for paying here. Here are the meds, we're gonna watch you. That's what it is. If you don't like it, there's the door. And it worked for nine years until until it didn't. But whenever he would go into, well, you think I have this illness and I don't, I say, we're not here to talk about that. Anyway, my answer to him was tell them that you have a diagnosis of schizophrenia and tell them you're done, but you don't have to say you think you have it, just say you've been diagnosed with it. And that was that made him comfortable to be able to say that in order to get into this program. So, okay, we have uh uh let me see what else is in the chat. Anybody want to ask a question live before we go back to the chat? Okay, uh this question from Suzanne for the three of us. Do any of you feel you would do anything differently today versus when your son was first diagnosed? So, would you do anything differently today versus when your son was first diagnosed? Like if you if you know now what you knew then, I guess.

SPEAKER_03 17:09

I would definitely argue less with Jim. You know, when he was first sick, I didn't know what anasygnosia was. I didn't realize he was doing the best he could. He didn't know that I wasn't uh the devil. He thought everything he thought was true. So I spent wasted a lot of time arguing with him, uh saying, You you know I'm your mother, you know this, you know that. And um, so I think if people do look at the Amador episode, the cliff note, if you haven't, is get over that, quit trying to convince them of something that their brain isn't allowing them to hear and move on and you know, do the bribing, do the, you know, do you feel better when you do this? And then maybe they'll take their meds for no other reason. Jim sometimes does things just to make me happy, so he doesn't want there's any sense to it, but if it makes his mom happy, like not using marijuana, then he wants her to be wants me to be happy. So I would do less arguing.

SPEAKER_02 18:10

Okay, I would do earlier intervention myself. Um, I have to say that, and and Duane, I see your hand, so thank you. Um and Nancy, if you can't turn it off, don't worry about it. Just do just hang out. It's fine. I I'll probably put this on YouTube on speaker mode, so they're only seeing the speaker on the screen. So um not to worry. So I I wish, and we talked about this on our our um mental illness literacy episode a couple of weeks ago. I wish I had known sooner that it could be as serious as schizophrenia. And when he was 15 and 16, I would have been when I had the legal right, more insistent that he get help and more insistent on a diagnosis and early intervention. That's what I would have done differently.

SPEAKER_00 19:06

Yeah, I agree. That that would be my biggest regret is you know, we we all as mothers especially have a predisposition to normalize. And when you're looking at your kid and they're acting weird, you don't want to think it's the worst thing. And so you mitigate it and you normalize it and you make excuses for it. And my advice to my old self or to anyone who's just starting on this is you can't overreact. You know what I mean? Worst case scenarios, oh, turns out they don't have a serious mental illness. Well, let's throw a party. But if they do have it, those years, those those years, those prodromal years when they're 16, 17, and then they're 18, and you can't, you don't have control anymore, are so important um to seize that time and do what you can do. And also early treatment is going to make for a better outcome, also.

SPEAKER_02 20:06

Wonderful. Okay, Dwayne, I see your hand up. It's it's Dawn. Oh, Dawn. Sorry. Um that's okay. That's okay.

SPEAKER_05 20:13

Everybody gets it wrong. I I started to type my question, and this is a little off the subject of anasygnosia and early. My I my question is about AOT. So my son diagnosed schizopol, and he's an AOT. He's also a part of Start For Pact team, and I'm finding that I don't think that my that our program, either one of them really, understands the illness that they purport to treat. And so I would like to know if you have advice on working with I've I've written a judge about our lack of experience with um the team. I've I've tried to talk with the director, I've I've reached, I've tried to do these things, and I want this to be successful. I don't have a whole lot of faith that it will be. I don't have much but uh but in the meantime, this is what we have. And so I'm I'm asking for suggestions or advice on how to work with with a group or with both groups. My son hasn't even been prescribed anything in three months since we started with this new act team. His doctor wants to get it perfect before anyway.

SPEAKER_02 21:39

Right. So just I think we have to go to the question because we could all share stories all night. And that's all. So if if I understand it, so AOT is assisted outpatient treatment. Uh, just in case you don't know an ACT team, is we've done episodes on that as well. What does ACT stand for?

SPEAKER_03 21:58

Sort of community treatment.

SPEAKER_02 22:00

Right. So that is where you do have help in helping your loved one, but it sounds like if I have this right, Dawn, that you don't think they understand what schizophrenia is. Is that, do I have that right? That is correct. Okay. So how can we, and you've already taken the steps to write to them about your loved one's history and symptoms. And is that correct as well? Correct. Is there anything else we recommend? So that's the question.

SPEAKER_05 22:30

So, Don, what state are you in? I'm in Louisiana. And yes, I do know Janet Hayes. And I have work. She has led me through the process and read my letter and said it's perfect. I wouldn't touch a thing. And um the judge asked the both AOT coordinator, and the and they one of them said that I wasn't a good petitioner, and another person said I was a helicopter model.

SPEAKER_03 23:00

So you, if Janet Hayes said your letter was really good, it was really good. And how congratulations on hooking up with her and trying to work with the judge and the acting. You know, in some states, and Minnesota where I live isn't always one of them, but some states, they we have a really good uh AOT law, we call it simple commitment, compared to other states. We get the A plus from the Treatment Advocacy Center, but our follow-up isn't so great. There are some states like Ohio and Texas that have wonderful follow-up for, you know, you get AOT assigned or you get an ACT team and they actually have some accountability. So that's what I'm sure I know Janet is working on in Louisiana, and you sound like you're joining her. But if you um aren't getting that accountability, the the black robe effect of a judge is what helps AOT to really have some teeth. And in states like mine, they you don't interact with the judge anymore, and then that makes it really hard. So I think what you're doing to try to get the judge to do something like prescribe meds, I mean, that's shameful and and um unconscionable to be civilly committed under AOT and have an ACT team, and three months goes by and you haven't had any medication at all. So I think raising the roof is your best avenue. And I, as a former legislator, think that elected officials have to hear about this. I would, you know, you could write to the Chief Justice, whoever is the boss of the judge that you have. I think you just need to really rattle cages if they're not being responsive and you're not being a helicopter mom. You are trying to save your loved one. So good for you and keep it up. Thank you.

SPEAKER_02 25:00

I think you're probably the best qualified to answer that question, Mindy. So thank you. Um we have a question that says, My child thinks we're friends, and she's an old man. Have any of you experienced this? So no. Did you say that one again? I didn't. Okay, so this comes from Casey, who says, uh, you know, my child thinks, you know, but they all have their delusions, and they don't always tell us what the delusions are. So I don't know if I've experienced it, but her daughter's child's particular illusion is that um they're friends, the child and the mom, and and she is an old man. She the the loved one or the mother, the daughter. Okay. The daughter. Um, I have not experienced that. I've experienced when my son refuses to call me mom when he's psychotic. That I'm not his mom. That's the closest I've gotten to it.

SPEAKER_00 25:58

Well, isn't what they tell us? I mean, Dr. Leitman says this all the time, is don't challenge fixed false beliefs. Not only is it folly, but it can agitate or set the person off. And his advice to me has always been to say, you know, okay, and then move forward from whatever the delusion is, but don't address the delusion really one way or the other. So, you know, if for for example, if your child thinks that they're an old man and you guys are friends, well, then operate as a friend to try and steer the child or the you know, the loved one to the proper help, to the proper medication, to be safe, to, you know, improve the situation. That's more important, I think, than you know, them thinking that they're an old man and you're their friend, because that clears up as the medication, hopefully, as the medication and recovery goes on.

SPEAKER_03 27:02

I agree with everything uh Mimi has said, especially getting the um medication right, because the delusion is never going to get better without the proper medication. But Jim has um shared a lot of his delusions with me, and I go into listener mode. I'm I actually am really interested in what his delusions are. Um and so one time we walked around a lake that takes an hour to get around, and he talked the whole time about the levels of the universe and things he had to do to get to nirvana, and he had a very complicated and complex delusion that involved me in a very bad role, and he um was in a good role, of course, and I just went into listening mode and um was really interested. And then as his meds got better, he began to question that himself. But when he's really tired and his meds aren't quite covering, he can still kind of question if maybe that isn't right, you know. So it's but listening this worked for me.

SPEAKER_02 28:09

Okay, thank you. That I just corroborate with that. I always remember, and this is more bipolar than schizophrenia, but I remember when um Ben was it was probably 20 years ago, he was going from prodromal to clearly psychotic, and I was trying everything under the sun, including, hey, this is a PBS special, maybe we should watch it together, because it was about mental illness, thinking maybe something would sink in. It didn't work, but I remember on this episode that somebody with psychotic bipolar was finally aware of his illness and stable on this medication. And I've never forgotten what he said. He said, you know, I take my medication now and I'm really aware that it makes me it's better for my family, it's better for my friends, I'm better at keeping a job, but I sure do miss being God. And so I I think their psychosis is very real to them, and there's no talking them out of it. So I think listening and go with the flow as best you can is um is a choice we can make. Um Julie, I see your hand. I'm gonna take just uh take one more comment from the chat. They're very interested in the bribing, Mimi. You know, interesting you mentioned bribing. Bribing and rewards is working, but I have to be reminded that this is okay. And um and Ruth wanted to know can you legally bribe someone to take meds if you have guardian? I I don't know about legal, but in my house, it's my rules. That's the way I look at it. So I don't know if there's any legality to parents setting rules in their own homes, but I don't know, state legislator.

SPEAKER_03 29:57

Do is that a I say with schizophrenia, all bets are off, do whatever works. And if anybody wants to challenge you in court, I think they'd be laughed out.

SPEAKER_02 30:10

Okay. All right, thank you. So um the question, Julie, you have your hand up. You're welcome to turn your camera on or just unmute.

SPEAKER_04 30:20

Okay. My question is I know that marijuana is bad. I know it affects the brain. Um, I have a son that um he is um living in, I got him also up in the house. He's living on the farm, he's doing great. We have him on disability. I'm his payee, but I do continue to buy him gummies, and he's only taking one medication. And what he's doing, he's functional, he's fine, he still has um like delusions, or he's still in psychosis, or he still believes people are after him, but he still lives a great life. My question to you is how do I just move forward for this? I would like to get him off the gummies. How do you move forward from this, or is this the best I'm gonna get? And I should just wait for him to heal. I don't want he also was not um he I did not have a relationship before all this happened. So now I'm really afraid.

SPEAKER_02 31:19

So I I would like to take the next step, but I I'm afraid and I don't know how to do it. Something I didn't say at the beginning. We're not doctors, we're not psychiatrists, we're not psychologists. So we are just three moms giving our opinions. That's yes, I don't want it, but my feeling is if it ain't broke, don't fix it.

SPEAKER_04 31:36

Okay.

SPEAKER_02 31:37

That's just that's how I feel. But but I know for my son it wouldn't work, but that's my thought.

SPEAKER_03 31:44

My thought is I would actually um stop buying the gummies for him. I would make it really hard and make him have to go through um getting them himself. When I said um that we have conditions and things with Jim being here, one of them is he has to be drug-free. And he has violated that. So um I worked with his psychiatrist, who is also Dr. Leitman, who's like the best psychiatrist in the universe, that both Mimi and I are lucky to have him for our sons. Um, but he, you know, in his challenging way, but joking and dice, has um really worked on Jim siding with me to get Jim off of um off of any kind of marijuana because it destroys Jim's brain. He would never get off of being psychotic if he was going to be using marijuana or anything um like it. So some people can deal with some of that, but people with schizophrenia have a very hard time. And Jim would never be as recovered as he is if he could not be drug free. So I think to make it as hard as possible and to keep um trying to educate him if he's I mean, I think it's really hard, but I I think you're not gonna get to any kind of recovery while he's using marijuana.

SPEAKER_00 33:08

I think we also need to point out that Dr. Leitman is not a psychiatrist, he's a doctor, he's actually an just a little short, short story because I think it'd be interesting to people listening. Is Dr. Leitman, who is has developed this protocol for uh clozapine, which has helped all our kids, he he was a nephrologist and his wife was an internist. And when their son got diagnosed with schizophrenia at 14, he did a sort of uh Lorenzo's oil, if you remember that movie kind of a thing, where he found this drug that wasn't being used, he created a protocol for it, and now he is tirelessly working to bring this to other people and save other people's lives, and he's having great success. But I think it's very interesting that he wasn't even a psychiatrist. You know, sometimes this whole psychiatry world doesn't really help that much or can be problematic. So I think again, what um what Randy said if it ain't broke, don't fix it. If something's working, that's what counts that it's working.

SPEAKER_02 34:22

Yeah, thank you. And you know, I've seen psychiatrists everywhere from useless to amazing. So and the amazing ones have a long wait period. So it is, you know, we're not here to diss all psychiatrists. It just if it's not the right fit, it can be bad. If it's a great fit, it can be amazing.

SPEAKER_03 34:42

So um and that's why actually I think Dr. Leitman is so incredible because he treats the whole body. You know, he's not just treating the psych meds, he's looking at the whole body and looking at the whole body. He's got Jim getting UAs um once a week. He has his urine tested for drugs, and then he spends a considerable amount of time every time we meet with him complimenting Jim when he has, you know, when he comes out clean.

SPEAKER_02 35:10

And thank you for your question. What I found a lot, and the way I think I want to approach my son now that you know he has a new chance at life. I want to focus if I speak to my son, not on his sobriety, which I think he needs. I want to focus on his dreams. I notice with all the people in recovery, they say that they were encouraged by people going, What do you want to be with your life moving forward once they're stable? And so it's, I guess, my son's decision whether or not marijuana use gets in the way of those dreams or helps. But I notice his pot use only happens when he loses hope, when he feels he has nothing else in life. So my plan is to focus more on supporting his dreams. We'll see how that goes. It's truly one day at a time. Ruth, I want you to know that we see and hear your question about how to, if we feel comfortable influencing or making our loved one take meds. I'm not gonna spend a lot of time on this because I think it's really clear that for the three of us, our sons would not be functioning without their medication. And so we recognize that there are other ways to look at it. But if someone is my son has never, since his illness, never done well without medication. Within 24 hours, he needs to be hospitalized with psychosis. And he starts to do things that scare people, not in a violent way, but in a weirdness way. And so I think that's an individual decision for every case. There are some people who feel that getting off medication is the goal. I think we're pretty clear that the three of us don't feel that way, that our loved ones do better. And everybody that's in recovery that we've had on our show have come to accept that their medications help them. Did I cover that, Mindy and Mimi? Yes, you covered it 100%, Randy. It's the equivalent of insulin if you have diabetes versus you know taking a tranquilizer if you don't feel well, which in a way is, you know, it's it's I don't think of it as drugs, I think of it as medications. Medications bring balance, drugs alter your mind. And so, you know, that is that is how we feel. And anyone who's is welcome to feel differently. But thank you, thank you for for that question. Um, Francesca, your hand was up.

SPEAKER_01 37:35

Um, thank you. First of all, um, it's gonna be really difficult for me not to be emotional. Um, I want to thank you three ladies. I feel like you guys have saved me um with all your suggestions and your podcasts and everything. I'm sorry. Um I know, me too. So we're all criers, so be careful.

SPEAKER_03 37:58

We won't be able to cry.

SPEAKER_01 37:59

I love I love you guys so much. I listened to you during my commute uh back and forth to work um a few days a week, and I suggest your podcast to everybody. I'm in an I'm in NAMI, um, local NAMI meeting and a um family support meeting where my son is at. And I am up to your December 6th, 2023 episode. So perhaps I haven't gotten to the point, but you're listening in order, like yes. Wow.

SPEAKER_02 38:27

Wow, okay. You're getting there, you're getting there.

SPEAKER_01 38:30

That's okay. I I have to. That's my own little OCD. I have a question about Randy. You talk about hopes and dreams, not to go into too much, but my son basically has been fighting with this illness. We have been fighting with this illness for almost 10 years. Um, my son just turned 27. Um, he has been doing well. He's living in a therapeutic community right now. He did have anasygnosia and um seemed to get through that phase because he relapsed and he remembers some of the things that he did when he was back in psychosis again. And that's a whole other topic.

SPEAKER_02 39:06

But um so if you can get to the question, yes, I'm sorry.

SPEAKER_01 39:10

Um he he is scheduled to start college in September, and I'm petrified. This is what he's always wanted to do. You know, he's an older student, and I just I'm I feel lost. I feel I think the facility is going to help him with writing up, you know, IEPs. He had IEPs through school, but I don't know if you have any resources or if there's a specific episode I can listen to about how do you deal with, you know, he's not gonna be far. We we live in Massachusetts, he's gonna be going to school in Rhode Island, but you know, how do you balance that with him being, you know, an older student? He wants to live on the dorm. I'm I feel like I'm starting to get to the like, what do I do? How do I let him go? How do I tell him I don't think maybe he's not ready, or you know, I'm I'm it you can't so much.

SPEAKER_02 40:03

Yeah, that you know, there's a lot. There's just a few quick things I'll say. First of all, if his treatment facility is willing to help him, let them help him stay out of it, let the help come from other people. I I think he will it it it's tricky. It sounds like he has support, and it may not work, right? But it sounds like it's something he really wants to try to be 27 years old in the dorm. Hopefully they will help him maybe live with other older students, but it sounds like he has support. And I would say, first of all, let them help is my my first thing. Mimi, Mindy, anything you would add?

SPEAKER_00 40:41

Yeah, I have something. Um, you know, I I think the question is more about what you can do, Francesca, for yourself. Because, you know, it's sort of if you extrapolate it out, it's a thing that all mothers go through when, you know, we push them out of the nest. It's just we have a whole different set of circumstances with these kids. But if it's something he wants to do and it's supported by the people who are taking care of him, I think you need to create some coping mechanisms for yourself because you're not gonna know, and it may fail or it may succeed. And it's just an extreme version of all those doubts and apprehensions that all mothers have. And I think that there's sometimes that we just have to trust the universe or trust God or trust whoever it is that where you what you assign that to. But just for me, I say it's time to trust the universe and see where this goes because we can't control it. Right. But I think it's it's really, really um encouraging that this is happening, you know, and if it doesn't work, it doesn't work.

SPEAKER_03 41:52

But right I Jim, oh, go ahead. Uh Jim went back to college when he was older than that. He was in his uh 30s, and he uh loved it in terms of the study groups. Nobody there knew he had a mental illness, and he got to work with people who didn't have mental illnesses, or maybe lots of them did. He took a psychology class for one thing, he might have been one of many that had a mental illness, but he really loved it. He studied and read his assignments like three times, and um, but the one thing I did as a mother was to encourage him not to take too many classes, and so he took two classes at a time and he listened to me on that, and that was the one thing I could do. Uh, the other thing I could do was took him to the student resource center and made sure he was signed up for accommodations, and I didn't actually even go in with him, I just took him there, waited in the hallway, and he went in and handled it himself, which he wanted to do. Those were the two things I was did that were helpful. And Jim was actually doing really well in school until uh he met a woman who cover in my book. So I'm not gonna cover here, but that was uh disastrous.

SPEAKER_02 43:17

Yeah, thank you so much. And that is the risk of any child when they when they fly the coop and go to college. The other thing I would say, and this is like for anybody, is that a question, and this even works with my little grandchildren do you want some help from me? Is there any way I can help? Instead of let me help you, let me help you, let me give you advice. That kind of open ended question is you know, is the do you want some help from me? Is there a way I can help you and let them come to you? My son also eventually came to the conclusion that signing up for 12 advanced credits was causing him. trouble so six credits at a time you know I I I applaud you for letting him try it and I think you know trust him trust his trust his other sources of support and then yeah pray a lot basically so I hope that's helpful um I a question from Susan which has to do with incarceration and her son is bipolar incarcerated and refusing medication not signed a HIPAA and I think I I can be the one to answer this since I've just dealt with the jail system in a different state. So here's what I recommend if your child is incarcerated and I understand he's refusing medication he has anastignosia. I took it upon myself to call and find out who his counselor is and speak to his counselor. Now I am conservator so I have more rights than someone who isn't but even if you're not a conservator or a guardian you are allowed to supply information to the psychiatrist at the psychiatric hospital or to the warden or counselor at your wherever your son is incarcerated. So call until the counselor the overworked counselor assigned to your son picks up and say where can I send you or email you some information so you have some background on the mental illness that my son has and find out and write to them. Give them the information but then if your son acts out they might have a clue why and they might be able to force medication on your son. That would be what I would say never be afraid to give information.

SPEAKER_03 45:50

And I would add to that I don't know if your son is in jail or prison, but in prison at least in Minnesota people who meet the criteria the same criteria as if they were not in prison can be civilly committed. The bad part about the judiciary system is there's a lot of people even though they have anasygnosia that can be cajoled or bribed or whatever into taking medication but the jails aren't and prisons generally don't have the kind of mental health workers who can do that. But in prison you can be civilly committed if you meet the criteria.

SPEAKER_02 46:25

Okay so I I hope that that's helpful. Nomi I see your hand up I'll get to you in a second. I just want to read this out loud um this is uh it starts with a huge thank you to Mimi for your book. KM says um it may have literally saved my daughter as I told her about your Nick's experiences and for the first time she realized she has schizophrenia. So that's going to make me cry. Her question is I live in a small town in Northern California mental health nearly non-existent I share with you that many rural communities have the same problem by the way her daughter my daughter's living with us a therapist no support. Okay any suggestions to obtain the best help in a situation in a small town where there's not a lot of mental health facilities everything's by telehealth. Any ideas and we may not have ideas but any ideas in a small one thing I do know is that um a lot of groups now since COVID do it on Zoom.

SPEAKER_00 47:32

So I'm sure there are support groups that you could find through Zoom and that that you could find that are on Zoom and that might be helpful.

SPEAKER_02 47:44

Yeah so support groups may have ideas that will uh that will help you do that. It is difficult in a small town I'm glad you're having telehealth so I think that's a great suggestion you can even take NAMI's family to family course virtually many people have written to me and said well we don't have it in our town and it's not gonna lie it's not as effective virtually as it is in person but it still is effective so if you can contact really any NAMI NAMI sorry anywhere but I guess it might be easier to do it in your own state and find out if they offer any virtual family-to-family classes that's something that might help you as well uh Roxanne we know that Dr. Leitman isn't taking any more guests but on his website he does have resources I believe yes Mindy and Mimi for other doctors that can do what he does.

SPEAKER_03 48:36

So I suggest you check out his website which is Team Daniel for recovery right dot there's one for Clasopine and one for running for recovery but if you just do team Daniel you'll come to both and and that will be suggestions.

SPEAKER_02 48:51

Okay Nomi we have five minutes left my friends and one more question that I see unless I missed it. So I'll I'll I'll check the chat but um know me am I saying your name right or is it name yeah that's fine.

SPEAKER_06 49:03

Hi um I want to say thank you to the three of you because um ever since I started going through this with my son I I felt lonely and it seems like there's not a lot of people that are aware of this. And um right now I have my son incarcerated and I just feel like I every time I try to speak with somebody there's no help. Like everything every time I go they say there's nobody that could talk to you because he's over overage and my son doesn't really understand the like even when he was at home he didn't under he didn't know how to do things on his own. Where are you? Um I live in California so I just feel like there's no help and sometimes I feel like should I pay a lawyer? I mean I don't I know you guys aren't lawyers or nothing but if you if it I feel like if there's more help if I will hire somebody or public defenders is is he gonna get the same help as getting a lawyer. Is is he pre-trial or is he convicted?

SPEAKER_02 50:05

He's pre-trial. Okay so he's in jail not prison.

SPEAKER_06 50:11

Yes in jail okay and every time I um go to court they they don't bring him in no more they just keep telling me that um they're I guess the the therapists are seeing him that's all they tell me like they just say I mean there's no status of what's happening with him. It's just I guess they're trying to give him medication.

SPEAKER_02 50:35

So you're not his guardian or conservator so you don't necessarily have the right to get information sadly unless you can start petitioning for conservatorship but that's difficult when they're incarcerated I mean I have an idea because I don't other than what I've said before like keep calling until they call until they speak to you.

SPEAKER_06 51:01

But but have you reached out to Nami do you are you getting any support through NAMI no I mean I spoke with somebody from NAMI and the riverside but she just I guess at the time that I was talking to her maybe I will she was too busy she just told me uh to that I could always come back to her whenever my son is out but okay so you're Riverside so you're near Los Angeles that's the closest one for me.

SPEAKER_00 51:29

Okay um don't don't give up email me and because I'm from Southern California maybe I can connect you up with somebody else who can help you better because that's a good place to start.

SPEAKER_02 51:40

If you go to any of the show notes it at the bottom of all the show notes it tells you how to get to our website so any of us can be contacted. We don't have a website for the show itself except on the person who hosts the podcast but um each of us has a page for the podcast on our individual websites and each of us can be contacted through our website as well.

SPEAKER_03 52:02

I would add two things um one we learn we three moms uh learn from our guests as well and one of our guests gave a really good idea that I've recommended to people and they've done it and it works and that is um you can talk to if most jails and prisons have a chaplain and they will often go in see your family member and talk to you more freely than any other person there. So I recommend that check and see if the jail has a chaplain. And then my son Jim has been in jail a few times and um we not for as long as Mimi's son, which I can't imagine why that's going on so long. But Jim has made his stops there. And um two of the three times we did get an attorney and um they used to cost like $5,000 now it's more like seven or eight and maybe it's more but um it's not cheap to have an attorney but in both of the times when we had one it was very very helpful for people who can afford that. And when we've been in the courtroom it's shocking to me that um almost nobody the ones that have mental illness or that are poor they don't have attorneys and they they just don't get the response from the system as someone who has has an attorney and that is a shameful another thing with the lack of equity in our courtrooms. The time that Jim and his girlfriend burglarized our house and were charged with first degree felony um we did not get an attorney because I was just so mad at him and I thought just let him deal with the public defenders and um in retrospect I'm sorry that we did that because now he's got they knocked it down to a gross misdemeanor but he has that on his record which will always impact his ability to get housing and if he ever tried to move on from the job that he has. So we are actually his four years after probation for a gross misdemeanor is six years for a felony, two years for a misdemeanor so four years for Jim with a gross misdemeanor it's coming up this August. So we now do have an attorney to try to get that expunged off his record because he was psychotic, he was high he was being victimized by his girlfriend and he also did not think it was a crime because it was our house. He wasn't off doing somebody else's house. So we'll let you know how that goes but now you know after the fact we're we're we're getting an attorney so if you can't afford an attorney I think it's actually worth it.

SPEAKER_02 54:54

Okay thank you and um I'll add one final suggestion which came from Lynn on her iPhone said ask the jail who the public defender is and she suggests you can share information with the public defender and request mental health court. I don't know if they have mental health court in California but thank you for that suggestion. Well we are at an hour and so I think we I don't see any hands up and we've answered everything in the chat. Also care court is what Lynn says as well. I just it says it's a new law in California.

SPEAKER_03 55:31

Okay awesome see what uh what resources California's doing cool cool things with those care courts shout out for California.

SPEAKER_02 55:40

So check that out I just want with this is so exciting we had 20 people join us today and I I recognize that some of you just wanted to be here and listen and we so appreciate you for being here for sharing information about our podcast with other people so that they can benefit. You can always contact us through our Facebook page I think you already know since you're here this is where I put the post but it's just search on schizophrenia three moms. You can do us a favor by rating our podcast five stars we hope and you know putting a review on there spread the word we're a grassroots podcast and it's only because of you that people are finding us so thank you so much for coming and if you want us to do another episode in another six months please let us know and we'll schedule that in and um any last words Mimi Mindy I would just say that again you're not alone we're here all the other moms are here.

SPEAKER_00 56:43

I mean we just need to find each other um somebody said I don't remember who oh it was Naomi in the beginning she felt so lonely and I think all of us can relate to that especially 20 years ago when there weren't Facebook groups and there weren't podcasts we're all here so get yourself help in terms of camaraderie and support because it helps a lot.

SPEAKER_03 57:09

And my final words me and Randy already know what they are but in case other people don't uh be sure once you've taken care of yourself and your loved one that you advocate in your own way contact your elected officials nothing is going to change unless we advocate for it.

SPEAKER_02 57:28

Thank you so much and thank you for the comments coming in on the chat thanking us thank you for everything you do um and votes for another episode like this one and um someone says stay strong everyone there is hope never give up and well thanks for all the compliments I'm not gonna read those out loud that's kind of embarrassing but I like it so thank you really so much for joining us I will um I have to see my son I get to get to see my son tomorrow. I don't get to see him I get to drop off things for him it still feels like mothering so I'm I'm happy to go buy him shampoo and bring it to the facility where he's at that's uh let me be a mom for a moment so I will but after that I will get this episode up tomorrow and thank you so much for wonderful wonderful questions and we'll see you next time thank you everybody hey thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling and Miriam Feldman to get in touch with us or to learn more about our books please visit our websites at MiriamHyphenfeldman dot com, mindygryling dot com or randyk.com