Dual Diagnosis: Double the Challenge - Episode 29

Getting personal on this episode about the effects of addiction (drugs or alcohol) on the family - and the double challenge when it co-occurs with SMI (Serios Mental Illness) - in our sons’ cases: schizophrenia.

Are we ever really out of the woods? Are our loved ones?

What can we do? What must we let go of?

The 3 moms get personal here. Solutions? We wish we had some - but we do share ideas of actions and attitude. 

Maybe you’ll hear your story inside of ours. You are not alone.

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What is dual diagnosis? (Co-occuring disorder)

What works? What doesn’t? - 

• “Harm reduction” treatment?
• 12-step programs?

Why is it so hard?

• Similar symptoms - delayed SMI diagnosisGrief
• Grief, Lost Trust, lost time
• Relapse disappointment
• Stronger drugs now 

What can the family do?

• “Trust, but verify” - blood tests, Urine tests
• Set your boundaries/rewards/consequences 
• Do what works - even if your break the rules you thought you knew
• Balance of letting go/stepping in
• Support a healthier community and purposeful activity for our loved ones
• Get support or help for yourself (the family) - AlAnon? Therapy?
• “Know that you’re dealing with something unknowable, and do the best you can” (Mimi)
• Look for Integrated Care for your loved one - treats both diagnoses together
• Keep watching carefully
• Be aware (and providers be aware) that what looks like “just substance abuse” may indeed be early symptoms of SMI - alert the family

Links:

Dr. Laitman - listen to our episode 18, June 2021

Samhsa has resources: 1-800-662-HELP

https://www.samhsa.gov/families

NAMI:

www.nami.org

https://nami.org/About-Mental-Illness/Common-with-Mental-Illness/Substance-Use-Disorders

Cedar Ridge: https://www.meridianprograms.com/program/cedar-ridge-mens-residential-stillwater-mn/

NAMI Family-to-Family

https://nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family

Book: Beautiful Boy

https://www.amazon.com/Beautiful-Boy-Fathers-Journey-Addiction/dp/0547203888

Who Are the 3 Moms?

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_00 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. So here we are at episode 29 or season two, episode four. And I thought just the three of us would talk about dual diagnosis, what they're now calling co-occurring disorder. If any of you have a loved one with not only a serious mental illness, but also some sort of addiction or alcohol problem, which I guess is an addiction. We just thought we did do a show on marijuana itself, but we didn't really get to get too personal about it because we were interviewing our guests. So I thought we'd just get personal tonight. I'm personally dealing with my son's most recent relapse. And he's a pot user. I'm pretty sure that's all he uses. But these days, pot can be lethal and it can be legal, which means a stranger can give you a lollipop and you don't know that it's an edible. Andor you could know it's an edible. So it's the pot world has changed. So I don't know. I know, Mindy, from reading your book, you had quite a bout with addiction. So um I'd like to talk about it and that delicate balance of letting go and stepping in.

SPEAKER_02 1:25

Well, I have to say that we are in the same boat in Minnesota as you are, Randy, in Connecticut. Um, I've been giving book talks for the past year and bragging about how um Jim has been sober for three years. But wouldn't you know it? Um, psychiatrists said, you know, we must trust but verify because he was noticing some symptoms that I just thought were, you know, due to not good enough meds or something. But lo and behold, when you have UAs, you can verify. So Jim has been using pot as well, and he now confesses for the last year and a half. So he's been having breakthrough psychosis, and I just thought his meds weren't covering, but that may be that is the case because his psychiatrist is definitely adding more clozapine to his regiment, but um, but it's not the whole story. So we are, I'm not sure what day we're on, maybe three weeks, uh, maybe not. Um, it's hard to say, but it's just very uh discouraging because, as you said, pot is stronger than it used to be in my day, and I only tried it once myself, but um, but it's it really wreaks havoc with uh with Jim's mental health. And that was in reading my book, as you referred to, that just I think is common in in all the stories and many people's stories that we want to think it's drugs, and then we have to admit that it's also mental illness, but they go hand in hand. And I thought we were taking a break from that, but apparently not.

SPEAKER_00 3:11

I'm sorry to hear that. What's your situation, Mimi? How is Nick with it?

SPEAKER_01 3:15

You know, uh I I strongly, I mean, I know that his schizophrenia was exacerbated and brought on by you know, furious drug use.

SPEAKER_00 3:27

Was it was it just pot or was he No, it was pot and it was everything else, you know.

SPEAKER_01 3:32

I mean, he was doing hallucinogens, he was doing drinking cough medicine, I mean, just like furious drug use, mushrooms, that was the worst, was he was doing mushrooms and things like that, but pretty much everything. And um, you know, I have a um uh now he doesn't do anything, but he doesn't do anything because I we do we do his blood every week. And if he's got any, we do a top screen every week. I mean, it's just because you know, once we got him online with the um the blood work that has to get done anyway for the clozapine, right? I said just throw a tox screen in there because I mean he, you know, every now and then over the years he'd pull, you know, get some pot or something like that, and he'd go right into psychosis. But now, because of the tox screen, I know even if he's like drinking cold medicine, we know right away.

SPEAKER_02 4:27

Wow. You tell from a tox screen because um Jim's doctor, and I believe we have the same doctor, um said he needs uh a UA, a urinalysis.

SPEAKER_01 4:39

And oh yeah, yeah, no, it's a different test, but I mean he's always every week all the same time. Lucky Nick is very compliant in terms of the testing. I don't know how we got that lucky with it, but he he'll do it. So he's so far knocked on wood, been very compliant. But you know, I think that it's a very murky area, this question of dual diagnosis. When Nick was first sick, we ran into a lot of trouble where we couldn't get him the proper mental health care because if he was doing any other drugs, the mental health department wouldn't have anything to do with him. And I think that probably the majority of people with mental illness are messing around with drugs they're not supposed to be messing around with. So to deny people treatment on that basis was really difficult to deal with, and I don't think it's a great idea. And also a case can be made for the the opposite of that, that anybody who's an addict has some sort of a mental health issue because they're an addict. So it's weird. How do you separate it?

SPEAKER_00 5:47

Yeah, and especially because the symptoms are are so similar. I know with my son, and I remember learning at, I think it was Family to Family, which is uh a course that you guys know, but our listeners might not. NAMI offers, NAMI offers a free educational now eight-week course available virtually as well, that helps provide a structure for the education we all need into our sons or any loved one's serious mental illness. And I remember learning that it's it's it's a chicken or the egg thing, you know. Are they smoking pot or turning to drugs because their brain is playing tricks on them, as my son used to tell me? Or is it because they're on pot that their brains like it's a chicken or egg? Like you don't know if marijuana is a cause. And we did have a guest on that talked about the research. So some people believe, I'll leave it at that, that that pot is one of the causes of exacerbating the mental illness. And other people believe it's just a reaction to a mental illness that was already there. I happen to believe the second one, but it could be a combo of both those things. But the symptoms, withdrawal from friends and family, sudden changes in behavior, engaging in risky behaviors, like these could be symptoms of a mental illness, could be symptoms of addiction. Like, how do you separate one from the other without a blood test? And then what do you do with treatment where they say, well, we can't treat the mental illness until we treat the addiction? Did you guys ever have any success in finding treatment that would handle both at once?

SPEAKER_02 7:34

Yes. Um, and I will say before I comment on those places, that um, I actually believe it's both. You know, as our guest said and research at the University of Minnesota where he was from, um, if you have, if you use marijuana, you're five times more apt to have psychosis. And that I think I firmly believe I'm in the camp where mental illness comes on earlier and worse if you're using because it leads to psychosis, which leads to um getting worse illnesses. But um, one place in Minnesota is called Hazleton, and it's a place where people like Betty Ford went, and they um their executive director has said that every single person that they're seeing nowadays started with whatever drug they are getting treated for at Hazleton, they started with marijuana. The idea that marijuana is not a gateway drug, um, he was arguing was is not accurate. Certainly um started on marijuana and like Mimi went to many other things. Um, but Jim hasn't been to Hazleton, that's a private place and very expensive. But um, he has been to um some places where they cover both, and some say they cover both, but they don't really do much except talk about medication for and then have people be abstinent while they're there if they're locked up or something. Too many places, in my opinion, use harm reduction where you can you, which is a good thing if you're using less and doing a little bit more safe things. But for Jim. But what's harm reduction? I don't, I'm not familiar with harm reduction is that you do less harm, you reduce the harm by using less marijuana or less crack or less uh heroin, and then that's better than using a lot. Um, but what isn't commented on very much is that harm reduction for some people means no drugs, and that's what Jim really needs. If he's at a harm reduction place and they let him use and other people are using, then he doesn't really get any better. It doesn't help his uh substance abuse and not really his mental illness either. But Jim was at a place that was in um um kind of a rural outer ring suburb of the Minneapolis-St. Paul area, where I thought they did it really well. And there they did not allow people to use while they were there, but they also had a very gentle philosophy where it was not the 12-step step program. Uh, Jim doesn't relate to that. He sometimes thinks he's the higher power, he's the he's God or he's the devil. So the idea that he has to submit to a higher power when he's there, he's not at his best, you know, doesn't really, he doesn't relate to that, he just doesn't like that, and everybody always confessing and it just doesn't work for him. But this other uh philosophy that they used at this place was um more kind of calm and finding not spiritual as much as just mantras of trying to you know be in the moment. And they just had a really nice way of treating his mental illness, but also showing him a healthier lifestyle by by the philosophies that they use. That one the best place I recommend it to anybody I can if they so what was it?

SPEAKER_00 11:08

What's the what's the place? We can put it in the links, yeah.

SPEAKER_02 11:11

It's called Cedar Ridge. Cedar Ridge.

SPEAKER_01 11:15

And I share with you guys something that happened this last week that is apropos to what we're talking about. Sure. And also I think might be helpful to other moms of sons or daughters dealing with this because we deal with the guilt and the um the self-judgment about comparing our kids, other kids, and feeling envious of other kids. Well, a really tragic thing happened this week. When Nick uh was growing up, there was a boy that he was friends with who happened to be the son of a friend of mine who I went to high school with. So in a small neighborhood, we've all known each other all our lives. And Nick and this other kid were like the golden boys, you know, they were all the girls were in love with them, and they were just handsome and smart and you know, everything. And um this other boy fell off the cliff of heroin addiction, and you know, Nick fell off the old schizophrenia cliff. And over the years, this is 20 years, and I'm still friends with his parents, and I've been watching this other guy because it got really, really bad. And I remember being with his mom years ago, maybe seven, eight years ago, and her telling me, you know, I just I have to let go, I have to let go of any hope that he's ever gonna come back. He's just gone from us, he's gone into this addiction. And then, miraculously, seven or eight years ago, he pulled himself out of the addiction. And he um over the last seven or eight years, I don't know exactly, he's been um he has stayed sober, he started his own um rehab sober place and has been helping all kinds of other people. He got married, he has had three babies under the four years old.

SPEAKER_00 13:06

Oh my god.

SPEAKER_01 13:07

Um last week I was coming home back to Portland from LA, and when the plane landed, I look on my phone and there's all these texts. And this boy who's 30 was 35, um, OD'd on her and he slipped and he's dead now. Oh my god, it's it brings up so many things because um, first of all, this whole thing of what did you call it, lesser harm or or uh harm reduction. Harm reduction, you know, maybe in the scope of mental illness and all of that, I can see where that works in. But honestly, this thing with people thinking that they can control it and do little bits of this and little bits of that, you know, my experience with addiction is that you're either using or you're not using, and if you're using it all, you're on your way to being in trouble. And um, and that was a story with this guy, and leaving behind this wife and three beautiful children, children and a heartbroman family. And apropos of where we are with our sons and schizophrenia and all that, you know, I've spent the last five years pretty much stalking this kid on the internet, you know, on his social media being jealous, right? Being jealous.

SPEAKER_02 14:20

Up until this last point, I was thinking, I'll pick heroin, but then you gotta well, that's what I mean.

SPEAKER_01 14:27

So he got married, and I'm looking at him with his beautiful wife, and I'm like, ah, that should be Nick. Why can't it be Nick? And then one baby after another, and then you know, he starts a sober place. And it's like, why, you know, it's not fair. People with um addictions, there's a chance you can you can get out of it, you know, mental illness, there's no, there's no end to it. But so I'm left feeling completely mixed up and confused because I feel guilty and I feel guilty for being envious. And you know, and it's just like it's such a morass that we live in with our kids and all of this, where it's like you're comparing who's doing better and who's doing worse. And on some level, you feel this uh this vindication when somebody's doing worse, not that you want to see them doing worse, but at least it's not you that time. And then something like this happens, and I get all this magical thinking, and I think this is my fault because I'm you know, I was envious, and you know, you know what I mean? But of course it's not my fault. But I mean, that's how much this kind of stuff stirs up. It's just it's so tragic.

SPEAKER_02 15:33

I think if we're honest, we all have to say, admit that we share, share your feelings. Have either of you read the book A Beautiful Boy, or seen the one uh might be one to put in the chat for people, but it's kind of like your your friend who's you know with heroin, but then this was meth, and apparently that's the really worst drug to have anybody ever recover from. And the beautiful boy somehow did at the end of the book, and I just um that seems so miraculous, but I had those same feelings then. Um, I thought, why couldn't my book end with yeah recovery? So that's the thing about addiction. Um, yes, sometimes people can recover, and but it's a lifelong thing you have to maintain.

SPEAKER_01 16:20

But that's the thing, we don't know where that is now either. And the thing is, if this kid's mom had written a book a week ago, it would have had a happy ending. Right. That's the thing about these addictions, about drugs like heroin and these opiates, is they own you for the rest. I mean, look at Philip Seymour Hoffman, that actor.

SPEAKER_00 16:41

Right.

SPEAKER_01 16:41

You know, I mean, for the rest of your life, it owns you. Whether you're using or not using, you're contending with it.

SPEAKER_02 16:47

You're contending with it. And if you um are sober for a while, then when you go back to opioids, you have less tolerance. So that's those are the people often that die from that.

SPEAKER_00 16:59

With it's I I spoke this week to um Mary, who's going to be one of our guests. She uh contacted me and she runs a housing development in New Haven, Connecticut that I had toured back when I was hoping to find a place that my son might be happy. And we still might go look at it at some point when he's ready to leave where he is. But I was asking her how things are going with COVID because they have a wonderful housing development. At least it looked wonderful to me on my tour. Like I don't know what goes on, but you know, they everybody has their own apartment, but there's a central clubhouse where there's a pool table and they have yoga classes, and there's a cafeteria. So if you don't want to eat alone, you can go down there, you can work in the cafeteria. It sounds fabulous to me. It's called Fellowship Place. And we will talk with her. But she was sharing that they've lost a lot of people because they're bored, they lost their jobs, they're turning to drugs, and so many of the drugs have fentanyl in them. And even the pot can have fentanyl in it. And you know, that is the drug problem. And obviously, you know, again, chicken or egg, what made this golden boy be on the addiction? Clearly, he didn't have schizophrenia, but he might have had some sort of DNA piece or personality. We can solve addiction. I guess what we can do, and and I know, Mindy, you haven't spoken much about Jim's past, but in your book, you talk about he had a girlfriend and their bond was partly drugs, right? Right, crack.

SPEAKER_02 18:41

And she got him into that. That wasn't really his drug, but it was hers. 11 years older. Um, she had a lot of issues herself. And I think that um that's a problem too. Our children and family members are vulnerable to predators who might have problems, might not, but she was very interested in his money for buying drugs and had a lot of schemes for how she could get it from him and how they could use it on drugs, and including subletting his apartment to a drug dealer in exchange for free drugs, taking him twice a week to get give blood for the money for drugs and selling all his things, et cetera, et cetera. It culminated into the two of them burglarizing our house for drug money when we were in Florida. I mean, it's just an insidious problem. And finally, luckily, she's currently uh locked up somewhere and they have been apart. That I had can verify. They couldn't verify the pot, apparently, but but I can verify that he hasn't seen her for a couple of years, and that is the best thing in the world because if your relationship is not really a relationship, it's somebody taking advantage of you to get drug money and maybe giving you some, so you will be have some skin in the game and want to give all your money up for drugs. But it's just it's a horrible culture. And Jim has just been through so much. And I feel like if he'd only been dealing with this mental illness and not this whole dual diagnosis or co-occurring disorder, that he could have done so much better. But every time he gets to doing well, that's when uh somehow gets back to drugs, and then that just drags him down. So I hope it doesn't happen again because I don't think I could take it, quite frankly.

SPEAKER_01 20:40

Well, you know, um, speaking of that, I think that we would do our listeners, our other circle of moms out there, um, a service to talk a little bit about back in the beginning, the confusion about is this mental illness, is this drugs, what are we treating? Because I think what happens, I know with me, what happened was is I lost a lot of valuable time um in confusion and not getting him the right treatment that he that he needed. And also this issue of maybe it's changed in the last 15 or 20 years, but this issue of people with co-occurring diagnoses of mental health um facilities won't take them if they're not clean. And so then they simply can't get any help.

SPEAKER_02 21:28

Or if them and then they use, they might kick them out if it's not a harm reduction place. So that's one argument, I guess, for harm reduction. But Jim has been kicked out of harm reduction places too, for you know, when he uses and then he throws something or something, and then they even though that's a symptom of being high, they still kick him out. So it's just a uh I get so very frustrated with everybody only wanting to deal with certain problems and not others when it's Total package for families, and it should be a total package for those providers if they're and then you have mothers like me who early on got the brilliant idea that we would just we couldn't find him a place a mental health facility.

SPEAKER_01 22:14

So I thought, let's just get him in a sober house. We just won't mention the pest thing. We'll try anything. And so Craig, my husband and I were touring Nick, and we thought, we just won't tell him, you know. They'll never find out. Yeah. Didn't even get past the interview. At the end of the interview, the man said to Nick, so are there any other do you have any questions for me? And Nick said, Yes. And he points on the wall across the kitchen and he says, Is that a bug on the wall or is it a drop of blood? Everybody got real quiet. And Nick just got up and walked out of the room. And needless to say, we were not accepted at that place. Wow. So gone, gong.

SPEAKER_00 22:58

Wow. Well, I will say that it was hard to tell at the beginning. I mean, when my son was 17 and a half, and he had dropped out of high school, and I knew he was using pot and mushrooms. I now think he did some LSD too. But luckily he's always been terrified of needles, so he didn't go anywhere with that. And that's just luck, maybe. But I sent him to a troubled teen program and I thought that would fix him. And his schizophrenia hadn't fully blossomed yet. But he did do some weird things on the wilderness trip. But um, like fasting for three days and saying, I'm just like Gandhi, until the counselor went, Gandhi was fasting for the good of mankind. What are you fasting for? And then I went, Oh, okay. And then he ate. Like, I mean, it's just like there were other people taking care of him. He got clean and sober. But I, you know, I say in my book, he was like, if you've seen Miracle Worker, he was like Helen Keller with Annie in the in the um cabin where she was behaving okay, but something was still wrong. She still didn't get it. That's how I felt my son was. So uh, but I think his schizophrenia didn't come full blown till he was 18. But he went back to pot. So for a period, getting just clean was helpful. He went through the motions with a decent amount of cooperation, but I I think we can all agree that the ideal would be to find a place with integrated care where they're willing to treat both at the same time. I will say that I was looking for some resources and I found this from SAMHSA. They have a resources page, and it's all very pretty and everything, but um they're just saying things like talk to your loved one, express your concern, a judgment-free zone. Like Al Anon has this that's where people who are relatives of people with addictions can go. And I will say it's sometimes helpful, sometimes not. I think what I'm doing right now, because my son is newly nine days sober, I think I keep throwing it back in his court because he is living in a place where they you can't, you lose your bed if you use. They give a few second chances, but I'm not sure how good that is, but it is good. But his recent thing was smoking pot. I think he does it for the community, for the friendship. It's like a feeling of like that was your son's girlfriend. Like it's partly the community of it. But they said to him, look, if you feel you really need there are homes where you can smoke medical marijuana. And Ben said, I don't want to go to another home, I want to be in this home. And she said, Well, that's the rule here. So for me, I can kind of say, if I even suspect you're high, I'm driving you straight home. Like all I can do is set boundaries. And I want so much to be in his back pocket, telling him what and what not to do. And I can't do that. I have to let go. And you went us, and I just like it's the same thing I do with my four-year-old granddaughter. Oh, that's an interesting decision. Oh, you worked very hard on that. Oh, what do you think of that decision? You know, I don't want him, I don't want him to get clean for me. I want him to want to get clean, but there's always consequences, and so I find that balance is hard. I'm not gonna hide from him that I'm disappointed. I'm disappointed for him because he's gonna lose out on things. I don't trust him though. What do you say? Trust but verify. I love it.

SPEAKER_01 26:40

Trust but verify that's our doctor. We have both have the same doctor, and he says trust but verify. And let me just clarify that Nick may be clean because I know he's clean, but he's only clean because we've created this very tight structure for him where he doesn't really have the opportunity, and he knows if he does it, he's gonna lose everything. There's not a meeting with his doctor that he doesn't bring up, Dr. Leitman. How about um marijuana? Well, I mean, I mean, he he has not given up on that. And he's misses it. He says it's you know, Dr.

SPEAKER_02 27:16

Leitman just says, when hell freezes over, you know, that's one thing I like very much about Dr. Leiteman. I like love a lot of things about Dr. Leitman, but he's just so personable that he can say things like that. And the and Jim, and and it sounds like your son as well, uh, relate to that. But I think um there's too much pussyfooting around in the mental health community and in the drug uh community, the substance abuse community, where um you don't give clear answers to say, you know what, it is just plain going to make your mental health worse.

SPEAKER_01 27:53

You're five times apt to have psychosis, even if you're taking that's the overlap of that Al-Anon mindset. You see, you cannot use the Al-Anon mindset with mental illness, it just doesn't work. It doesn't work. This is out of my control, it's your problem. I can't affect this person. When you have somebody who has a dual diagnosis, you can't take that approach because it's it just doesn't work. There needs to be another framework.

SPEAKER_02 28:21

And I think there they have to hear a clear-cut message. You know, if I have, we talk about the younger days. If I could go back to Jim's teenage years, I wish I had been more clear-cut. Yes, I only used marijuana once myself, and I actually got psychotic in that one little time. And so I was afraid to use it again. But um, I also grew up in the era where it was kind of okay, it wasn't much different than alcohol. And so I don't, I regret so much that I did not give a clear-cut message to my children when they were teenagers. I was kind of treating marijuana like alcohol. If I had known anything about how much five times more likely to have psychosis than my grandmother had schizophrenia, hello, you know, why didn't I point that out? Well, I was ignorant, I didn't know, and that's my biggest regret um that I didn't know and I didn't make it clear cut. I do now, and I will use anything. I absolutely don't want you to do it. I mean, I'm really clear now, but I wasn't, um, wasn't when Jim made you.

SPEAKER_00 29:30

Do you really think it would sorry for that? Do you really think it would have made a difference? I mean, this is what we mothers do. We we find guilt for what we did and didn't do. And, you know, I'm looking at this, I'm looking at this little flyer, and it's like, be open, discuss your family history of mental illness, of drug and alcohol use, if relevant, it may help your loved one feel less alone. This is like a wish list. I mean, it's just I I wish we had answers. Here we are. We're just having a support fest, I guess. But I think, you know, whatever we mentioned might work for somebody. For me, it's setting boundaries. Like if you use that, you know, right now at the moment, my son is enjoying having a long-acting injectable, he doesn't feel like it's as intrusive on his life, and so I'm not having a problem, especially because there's a staff helping, you know, he's he's on his medication, but there's times when he comes over and we're having a great conversation, and then he goes out with a friend and he comes back and he seems weird. And I'm like, Did you use? No, what am I gonna do? You know, and so all I can do is set my boundaries and and I say, Look, it's your choice. And he is relatively sane right now, so I can say things like this, but it's your choice. But do know that if I even suspect you're high, you you can't come here and I will take you straight home. And I, you know, I want I would love to buy you some lunch, but uh, let's your next drug test has to be clean. Like, you know, I can set my that's all you can do with people is set your boundaries. And I remember in Beautiful Boy in that book, when the father makes the decision toward the end of the book to not answer his son's calls, which is very powerful, but it doesn't always work out that way.

SPEAKER_02 31:20

It doesn't, the boundaries I like to set boundaries too. I set a lot of them, and I always run into trouble if I get too absolute because mental illness doesn't fit into square boxes. And so this is the so we have when Jim was high, when he was with his girlfriend, we actually had a a restraining uh restraining order, or we call them now no contact orders, where Jim not only could not come here by our wishes, we could call the police if he got within a certain number of feet of our house. And that was after the burglary. We we only kept that on for a couple of months, um, but we had to do that. We felt for our so we set that absolute boundary. Um, and we didn't want to see him if he was high, if he was belligerent, if he was rude. But now today the boundaries aren't working as well. Jim is at our house probably six days a week, and then we said you can only be here because when he broke up with his girlfriend, he got lonesome. So we said you can be here, but you have to be sober. And but in the meanwhile, back when he goes to his own place, apparently for the last year and a half, that's where he's been using the pot. And so now um Dr. Leitman is transitioning Jim from his from Haldol, and he's already got him off of searquil. He's moving on to more phosipine, he's doing much better. But he's Dr. Leitman said, Don't have Jim be by himself during this transition. He should be with you because it's it can be gaps in service with the meds and be dangerous for him. I'm sure suicide is always, you know, the fear. Jim has tried that many times. And so, um, so my boundaries of no using or you can't be here doesn't work at the moment. There's always something to hang us up because this illness is so, so confusing. And no matter how long, you know, 20 years or so, we've all been dealing with it, more or less. There's some we think we're coping or we have it straight, and then something comes up that throws us for a loop, and that's the loop we're in right now.

SPEAKER_01 33:26

Yeah, but I think that that's a message that we should get out there too, is that yes, you have to um you have to have boundaries and you have to set limits and you have to uh try and work these programs and all of that their structure, look for help.

SPEAKER_00 33:41

Yeah.

SPEAKER_01 33:42

But I one of the most important things that a doctor ever said to me was early on when Nick was diagnosed at that point with bipolar, and he was still a teenager and he was still at home, and he didn't want to take his meds. And the doctor said to me, I said, could I pay him to take the meds like with that? Because I mean, that's like goes against everything that you think of as a parent. And he said, Look, let me make it absolutely clear to you your son has a mental illness. Everything you thought you knew about parenting, every rule that you've been adhering to, all bets are off. All that matters is you get that medication into your son every day. And so for a year, I paid him every day to take his meds in front of me, and he took them. And um, and so, of course, you know, to much to the chagrin of his siblings, you can imagine. And um, but I think that that we all need to remember that and forgive ourselves and understand that we are on a path that is bespoke. Even the three of us who are very similar in lots of ways and have sons with schizophrenia, each one is different. Every single one is different. So it's a pretty scary terrain, but you have to make your own rules and you have to be agile, you know. You have to be willing to change course and reevaluate. And that doesn't mean that you failed, and it doesn't mean that you're inconsistent or sending bad messages. It means that you're dealing with something that's unknowable and you're doing the best you can. You said that very well.

SPEAKER_02 35:18

You did so strongly believe in that too.

SPEAKER_01 35:21

Yeah.

SPEAKER_00 35:22

So I think for the last few minutes, let's call from this conversation what we think are the most honest and possibly helpful things. One is I love that, like, do whatever you need to do to get the result that you want. Because what you think you know about parenting kind of went out the window. Set boundaries when you need to, get help if you need to. Um, sometimes for some people, talking to your loved one, you know, especially early on and being honest about your own experience. I don't know. Um SAMHSA Substance Abuse and Mental Health Services Administration, I've never really gone to them for support, but they have an 800 number for free and confidential information and treatment referral. It's 1-800-662-HELP. You want to look for integrated treatment if you can. Uh, what else have we brought up besides you are not alone? This is confusing. Anything else that came out of this that you found helpful?

SPEAKER_01 36:33

Yeah, I would say early on when you notice something's awry, and the tendency is going to be to think it's drugs because that's a more acceptable and more common uh occurrence, I think is to keep your mind open and be aware that there are symptoms that look very much the same as drug symptoms that are mental health symptoms. And there's no way to know for sure, but to I think always keep in mind the mental health thing. Don't just shove that away and think it's only drugs because um that stuff emerges slowly and you have to watch carefully.

SPEAKER_02 37:19

That is huge, and I think uh Randy summarized everything really well, and I just love um Mimi's statement about break all the rules, you'll have to, whatever you thought you won't apply, probably to mental illness. And then I will just end with building on uh what Mimi said. You know, we all think we're unique in the diagnosis progression, but actually everyone who gets to schizophrenia does have common path. And not everybody that has those steps ends up with schizophrenia, but everyone with schizophrenia does, and that I know of. And that is first there's drug use, and the teenager needs it more than their friends, and so therefore, there's more use of it and it's more serious, and then you get diagnosed with things like depression or depression with psychotic symptoms, invariably, then they go to bipolar disorder, and then you go to schizophrenia, and then you get your specialty in schizophrenia, which our sons is schizoaffective disorder. I thought when Jim was going through those steps, what is the matter with these people? You know, they keep changing. I read all the books about depression and then all the bipolar disorder. When it's really schizophrenia, why didn't they just tell us that if that's what they thought? No, that's their diagnosis, diagnoses procedure and protocol, and they don't want to make a big diagnosis before they have to. But I wish there was more education from the professionals and from everybody and for the general public that that progression is common. And so, why do they leave the parents in the dark that that's a possibility? I think we should know every step of the way that this is a step. And the more steps you take, the closer you are to schizophrenia instead of just leaving you clueless at each step and you have no idea what's around the corner.

SPEAKER_00 39:17

Wow, that's really that's like, you know, we always start with a cold. And if it turns out to be lung cancer, you would have wanted to know that maybe that was a possibility. So it's the same sort of thing. That's really powerful. And I think the last thing I'll, you know, get support, go to a support group for yourself if you can. Um, and I know for my son, what seems to help him is having things to do. Having things to do. And I'm encouraging him without pushing him. And it's easier now that he's not living with us, but he is going to meetings and he's at least last week, he says he has nothing to do. So he goes out and finds a joint, you know. So I've been there there are things open to him, there are group opportunities, and four mornings a week, he has availed himself of community opportunities, healthy things to do. They go to a movie, they go bowling, they just to be around people. And it's kind of a carrot you dangle. I know when my son was little, he's a Taurus, and they said, never tell a Taurus child it's time to go to bed. Say, don't you want to go to your nice, cozy, warm bed with that blanket and pull it up under your chin? You know, so for my son, I think about that now. And it's just like I really looking forward to you coming for Thanksgiving. And I hope you can. It all depends on the drug test. And just dangle those carrots. It's one of the things that helps sometimes. And all the other thing we can tell you is you're not alone, know the signs of relapse, get help as soon as possible. And yeah, it's really damn difficult. And we feel for you, and we don't have all the answers, but we're trying. Next week we have a guest from um Fountain House, the start of the clubhouse movement, talking about constructive things to do that is that's going to be very exciting. So I look forward to that. And hang in there, you guys. Yeah, you too. And I'm really excited about the next program, too. Good. All right.

SPEAKER_01 41:27

You have hang in there, all you moms out there, too.

SPEAKER_00 41:31

We're with you. And it's a club you never wanted to be in, but you're not the only one in it.

SPEAKER_01 41:36

Yep.

SPEAKER_00 41:36

There's a lot of clubs I'm in I don't want to be in. All right. This has been episode 29. Thanks for joining us. You can go on our Facebook page, you can follow us on YouTube, and we are Three Moms in the Trenches, Schizophrenia. Hey, thanks for joining us for this episode of Schizophrenia. Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, MindyGryling.com, or Randy K.com.