Getting Help:Low Points, Wild Goose Chases and Lifelines (Ep. 2)

• Q: Describe one of your lowest points as schizophrenia progressed in your son - how did you survive?
• Q: Were there “wild goose chases” while trying to figure out what is happening? 
• Q: Describe a moment of hope / accomplishment - what was working ?
• Getting Help: "SEARCH"
  • Support - emotional, practical  - how to feel less alone
  • Education - Books, Classes 
  • Acceptance - how to get there, stay there?
  • Resilience - building the skills
  • Communication skills - what helps not make things worse?
  • Hope/Humor 

Transcript

Copy Transcript Copied

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 Feltman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. Welcome to episode two of Schizophrenia. Three moms in the trenches, that's us. This episode is called Getting Help. Low Points, Wild Goose Chases, and Lifelines. Lest you think we have all the answers, just because our sons have been dealing with this for about 10, 15, 20 years, we do not. So I thought we'd start today. Even though we've written books to tell our stories, you might not know our stories. So Mindy and Mimi, I'm going to start by asking you: can you share one of the lowest points in your journey with your son's schizophrenia?

SPEAKER_01 0:59

I can think of something right off the bat. So maybe I'll go first. But Jim has always been a loving son and he's a sweet, warm person. He's always obeyed and been a really good kid and did what he was supposed to do in school, and mine did the teacher, at least until he got to be a teenager. So when he had a delusion saying that I wasn't his mom, I was an imposter, he really thought that he had to do something about it. And his voices told him that he did need to do something about it. He always has voices that tell him something terrible that he has to do. And then he thinks he has to do it. He never actually got to the point of harming me, but I didn't know that at the beginning. We went through that for up towards a couple of years, where every time he was psychotic, which was often, as we know, the hospitals send them home very fast. And I was definitely afraid of him. And then we ran into the mental health system that said there's nothing we can do because he's not dangerous enough. He hasn't done anything, has he? Has he touched you? Well, no. But I would tremble in my bed at night. I can't think of anything worse than being deafly afraid, sorry, of your own son.

SPEAKER_00 3:00

Wow. That is we're going to be talking in the next episode more about what exactly schizophrenia is and what we think the voices say to our sons. In your case, Mindy, I know from your book that Jim knows he hears voices and he admits to that. I do remember that one story in your book where he disappeared for two or three days and he was just walking or running because he wanted to run from the voices. Is that do I have that right? Because they were.

SPEAKER_01 3:31

You'd have that right. And that actually threw this business of him thinking he had to kill me. That was a day when he was getting up from bed. He'd been sleeping, and I was in the hallway. And I was backing up because I was afraid of him. He got up suddenly and just rushed towards me. And I really thought then I might be able to call 911 because I thought he was going to harm me, but instead he just roughly pushed me aside and went down the hallway, got dressed somehow, and left. He just left and he was gone for the rest of the day and hours and hours and hours. We didn't know where he was. And finally he came home and he didn't have a lot to say. We never knew what was going on with that episode until, you know, weeks later, I think it was, when he explained that the reason he left was because the voices were really strong that day that he needed to kill me. And thankfully, he didn't want to. He felt like a huge failure because he didn't do what he was supposed to do. And that must mean the world would end or he would go to hell or something terrible would happen to somebody who he loved, not imposter person, but maybe his real mom or his real dad. So he left. But he felt that if he didn't keep walking, they were he would die and or the world would end or something terrible would happen to someone he loved. So it was a hot day. He kept walking. He actually went miles. We live in a suburb north of St. Paul and he got almost to the south end of St. Paul by walking. And he was so hot, so thirsty, that he finally just sunk to the ground. And then he discovered he didn't die. Nothing seemed to happen. So finally, after he rested, he got up, he went to some sort of coffee shop and got something to drink because he was just dehydrated. And then he walked home. And that's when he came home and quietly went to bed. And you know, we didn't know until much later that he had saved me by leaving instead of killing me. That's how horrible schizophrenia can be.

SPEAKER_00 6:03

Wow. Mimi. Can you tell that?

SPEAKER_02 6:11

There's so many things, but you know, I remember one time I had gone to a party with my girls. I'd forced myself to go, and we went, I'm sitting at this party, and it was a friend who had kids also Nick's age, and looking at all these kids and thinking, wow, everybody has these beautiful, healthy, wonderful kids, and my kid is just gone. And feeling really bad. And I came home and I just had a bad feeling about Nick. And he lived in an apartment a few blocks down. And I called him a few times and he didn't answer. And I went down there and I knocked on the door and he opened the door and he was kind of groggy and out of it. And it was just the end of the daytime. It was just dusk, and so I couldn't really see. And I said, What's going on with you, Nick? And I reached in and I switched the switch on of the hallway light, and it was covered in blood, just covered in blood. And there was blood on the walls, there's just blood everywhere. And I didn't know where this blood had come from. And you know, we we went in and I tried to figure it out, and I couldn't find anywhere on him where there was blood coming from. So then I thought, oh my God, is this somebody else's blood? Which is even a more horrific thought. And I just didn't know what to do. And at that point, I finally learned that the thing you do is you call 911. So I called 911, and you know, they knew us by now, by then. And I just remember sitting on his bare mattress of a bed with him next to me and blood everywhere, and he just sort of slumped a little bit against me, and just sitting there waiting for the paramedics, and just feeling so desolate and so lost, and such a sense of how am I here? How did this happen? How did we get to this point from my seemingly normal, regular, middle class life to where I very calmly know what to do when I find my son covered in blood? So that was a low point. Yeah, I would say so. Turned out the back of his head was cracked open. I didn't know that. Tremendous amount of blood comes out. We never found out what happened.

SPEAKER_00 8:37

So you don't know how the blood got there. Wow.

SPEAKER_02 8:40

He was very psychotic then. So we I don't know how he cracked his head. Yeah, I don't know what happened.

SPEAKER_00 8:46

There are so many, you know. I was trying to think, well, what story am I going to tell? Because there are so many phases. There's the beginning where you don't know what's going on, and you're trying to save them, and you you they call it normalizing. You're like, well, if I just do this, we do tough love. I can't tell you how many times he ran away from home and I made a written contract and he'd come back. The roller coaster goes the merry-go-round at that point, goes round and round. For me, I think one of my low points was uh a little bit different in that he finally, finally got hospitalized. I finally understood it was schizophrenia. He finally got in the hospital. I went through all the steps to get conservatorship so that he would have to stay there and so that I could require that he get medication. And I used to visit him, and but I was reeling with this shock of oh my God, this is what's been wrong all along. And he's 21 at the time, and he's my boy, you know, he's my boy. And I remember going to visit him, and some days we're better than others, and he wasn't quite there where he needed to be, wasn't that coherent, but we could play cards and we're playing cards, and you know how they sort of fade in and out of consciousness depending on what's going on in their internal world. And and he looks up at me and he goes, Oh, mom, you you forgot something. I said, Oh, okay, honey, what did I forget? And he looked down, we played another round of war. He goes, You forgot something. I said, I know you told me, what did you forget? And he looks down, deals a couple of cars, he looks up and goes, You forgot to take me home. And there was my little boy inside this twitching delusional young man, and near about broke my heart. And I said, You know, you're all the things eventually you say, You're here because we want you to get well, and all the things a mom would say. And the visit is ending, and he goes into his room and he comes out of his room with his plastic bag/slash luggage packed. Going down the hallway, shaking hands with everybody. My mom's taking me home. My mom's taking me home. And I wasn't taking him home. And that just broke me. And the nurse, God bless her, said to me, We've got this. I know it's hard. It's time for you to leave, mom. And I left, I went through the locked doors. The minute I was out of sight, I just collapsed against the wall sobbing. Because with all the chaos we were dealing with, there was a reminder that there was my little boy in there. So there were a lot of other more crisis points, but that was a real low point for me. And I felt helpless. So we've all had our low points, and we know they come again and again. And let's just spend a minute on wild goose chases because I know from my son schizophrenia came not quickly. It was a gradual onset. It was really hard to come up with a diagnosis, and we'll talk about that more in the next episode when we talk about what is schizophrenia and why is it so hard. But I had one therapist tell me, oh, there's nothing wrong with him. He has ESP and it's such a burden. He's really psychic. And then there are other wild goose chases of just treating ADD and wild goose chases of, oh no, mom, the problem is you. Just get him his own apartment and he'll be fine if you just stop interfering. So I don't want to spend a lot of time on this, but let's can you did you guys go on any wild goose chases and trying to figure out what was wrong with your son?

SPEAKER_02 12:40

Yeah, very much so. You know, one of the things I always say is that teenage behavior can be interpreted mental illness just regularly. So in the beginning, I spent a lot of the time on the internet and a lot of time reading and making lists of behaviors and trying to figure things out. And you know, what we went through a lot was a more of an internal struggle in the family because my husband took the position that I was just indulging him, and all we really needed to do was toughen up and use tough love and you know, show him that he couldn't get away with this anymore. And the learning curve on that is protracted, you know. I think some days it's the you know, it's 15 years in, and I still have this conversation with my husband who says to me sometimes, I think he's just lazy. And you know, it's very hard for men with their sons, I think, to reconcile because they identify and they see them as a reflection of themselves and all of that. So we had years of that struggle of we just needed to be tougher on him and it would be okay. And it's very hard on a marriage, and it's very hard on a family, and it's very hard with the other siblings too, because they would see me doing things with Nick or letting Nick get away with things that I never did with them, and that would create resentment and anger. You know, one point I paid him to take his medication, paid him 10 bucks a day to take his pills. The girls would stand there looking at me, like glaring at me with this anger, you know, nobody ever paid us to take our amoxicillin. What's going on here? And it was rough.

SPEAKER_00 14:20

Yeah. Yeah. See, we have a wild goose chase is within our own families.

SPEAKER_02 14:24

Yep.

SPEAKER_00 14:25

Mindy, anything to add there?

SPEAKER_01 14:27

Uh, our son got sick quite abruptly, or at least it seemed that way to us because he'd been at college and came home. So it maybe it happened more gradually there. But what was the biggest wild goose chase for us was actually what the mental health system was doing and recommending. But I felt like it was a wild goose chase. And that is when he was in the hospital, each time they sent him home, and he had a case manager or a social worker who visited him once a month or so, and they worked on a plan. And the plan was Jim would tell us when he was in crisis or when he didn't feel safe. And Jim would do this, and he would volunteer, and he would get a job, and Jim would do this and that, and the other thing. That was the plan. All the things Jim would do. Jim would take his medication and would promise to do all these things. Jim, sign, sign, sign. And then, of course, none of that happened. So it was a big wild goose chase, but it was the mental health system. That's what they considered the answer. Send him home with a contract for what he would do, and he promised. I'm thinking that didn't work. That didn't work.

SPEAKER_00 15:46

Not one bit. So believe it or not, we're we we're about halfway through the podcast already, and we're trying to keep these under a half an hour. So we talked about low points and wild goose chases. Let's switch now to what helps. You know, my book has been out 10 years. Your guys, your books just came out this year. So I've been speaking about this, as I imagine you have as well before your books. But when I would speak to practitioners about what families need and how to include the family, I made this acronym called search. And it stands for support, education, acceptance, or maybe advocacy, but that's kind of part of the same A. R is resilience, and C is communication skills, and H is hope, humor or respect. So I thought we'd just briefly visit each of these letters and we don't have to all three go with each. If anyone is listening here trying to get some tips or some hope or things that helped us in those categories, share away. So let's start with S for support. This could be emotional support or practical support. Where did you find education is coming up? So that's E, but where did you find emotional and practical support? We've talked about what hasn't been working. Were you able to find any anywhere?

SPEAKER_01 17:06

Support groups or by women, relatives, and friends. So my mother was living at the time, I called her. My sister was living at the time, I called her. I had college friends and friends throughout my whole life. I called all of them, and we would sit and talk or talk on the phone if they were far away and cry and actually laugh sometimes. And that's where I got my support was other people who empathized, even though they might not know anything about mental illness, but also I had a lot of people who did know about mental illness and they came and helped me as well. So people and I found that my female friends were the ones who could show their emotions and grieve with me, but I don't think I would have survived without them.

SPEAKER_02 18:03

You know, I think having a quick diagnosis like you have makes a big difference. I don't know if you can relate to this, Randy, but for me, it was such a long slide into this, years, that eventually I would have exactly the same answer as you, Mindy, but it was years in because for many years we didn't know what it was. And then as we started to know what it was, I didn't know anything about mental illness. It was such a long learning curve for us. It's much harder, or not harder, but it's it's different when you constantly are able to pull back and sort of go, well, you normalize, you know, well, maybe he's just a regular teenager. And that just as a parent, as somebody dealing with it, sets you back every time you do that.

SPEAKER_00 18:51

Yeah, for me, I'd have to say that was true too. At first, it was like, my teenager's crazy, and so is yours. Let's, you know, we'd lock ourselves in our bathrooms and call each other up and go, Do you want to kill your kid? Yes, I do, you know. But it was almost funny until their kids started growing up and mine started hearing voices or using more drugs or the other thing. And it was like, oh, don't ask Randy how her son is because look out. But for me, there were a couple of turning points of support which will morph into the E for education, which was for me finding a NAMI support group. I tried Al Anon, I tried a bunch of things. And for me, support groups don't always work. It depends on who's running them and who's in them. So that I will say for me, what really helped, because I went and I liked it better when they had a speaker meeting because I could learn something, even if I didn't get to talk, I could take something home with me. And that pointed me toward family to family, which was for me powerful. At the time it was a 12-week free class to understand mental illness. Now it's eight weeks, but the family-to-family class is what where all the light bulbs went off. I went me too.

SPEAKER_02 20:03

It really saved me.

SPEAKER_00 20:04

Oh, you know, so educating. So going into E, I would I just want to share a couple of books that really helped me back then. One of them is this one, the Bible. It's called Surviving Schizophrenia. So we all I thought we might bring the same books. I remember I'm a theater actress and I was doing a show, and I had a stretch of time where I was off stage for about 45 minutes, and there I was in my evening gown reading this book with a highlighter. And another one I don't have that really helped me was a book called The Day the Voices Stopped. Ken Steele. Ken Steele. And I must have gotten it from the library, but at that point, I think I knew my son was hearing voices. He still doesn't say it or know it, but I did. And there was a scene in that book where Ken Steele took Clauzel and the voices did stop, and he was terrified. He locked himself in his bathroom for three days because he missed the voices. And that gave me such insight into my son. So that's a couple of things that helped me. Just FYI, we have about five minutes left. So share your books. And what else helped you?

SPEAKER_01 21:25

I was going to share that one too, but you have. So I'll share just this one. And this is a book I am guessing a lot of people haven't read or heard of. But I know the person who wrote this, and he gave me a copy of his book. He's a Minnesota author named Um John Trepp.

SPEAKER_00 21:44

And he was actually So if you're listening on podcasts, this is called Lodge Magic. Go ahead.

SPEAKER_01 21:50

Thank you. Lodge Magic. And it actually talks about a magical kingdom, which is Minnesota's version of the fair. Weather Lodge program. If you've heard of that nationally, it exists in a lot of states, but not every state. Minnesota, we call it something different, but it's a Fair Weather Lodge program. And I read about it and it infused me with such hope because surviving schizophrenia that we just talked about is the Bible. It gives us information, it helps us cope. But this book showed me that my son could have a life again. He could have live independently in a nice house with a few other people with mental illness. So he had a nice house, he had good friends, and then in addition to that, he was provided a job all through this same company through the Fairweather Lodge program. It's called Pass Unlimited in Minnesota. And Jim eventually went to that program. I showed him the book, he read it, and then the magic happened when he got there. And I hope we have time to talk about that in another episode.

SPEAKER_00 23:07

We will definitely do an episode on um residence and housing and options because there's a lot to unpack there, as they say. All right, what would you share, Mimi?

SPEAKER_02 23:19

Well, you know, the book that the besides surrounding schizophrenia, one of the first books I read was Pete Early's book. Okay, this is that's called Crazy by Pete Early. And it's a the subtitle is A Father's Search through America's Mental Health Madness. And again, this was 15, 20 years ago. So there wasn't people weren't talking about this stuff that much, and there wasn't very much in the zeitgeist about the insanity of the mental health system itself. And Pete is an investigative journalist. So he alternated uh chapters. One chapter was his personal story with his son, and then the alternate chapter was what he did is he, you know, he he used the tools he had, and he went on a quest to figure out what was going on in America's mental health system. So the chapters alternated, and this book helped me a lot because it made me realize, first of all, Pete seemed like a real normal guy and his kid and his family, and and it made me feel less like a freak because then that was how I felt. And then also it sort of gave me the heads up on don't look for a lot of help in the mental health system because you're not gonna find it. And as sad and as tragic and as wrong as that is, it was good to know that going in because I went in forewarned as forearmed and I was ready to fight.

SPEAKER_00 24:45

Hey, thank you. We could probably do a whole episode just on books that have helped, but this is the start, and that's important. I also brought up I am not sick, I don't need help, which is That's an important book. It's an important book as well. Uh, I I've taken his workshop. It's not perfect for me. There are little whole few holes in the theory for me, but just to see things from my son's point of view was was really powerful. So we are in our last few minutes of this episode, and I think we will continue this. We did speak about acceptance on in episode one, so I hope you'll catch that. Resilience, how we keep going, communication skills. I think that is huge. I've learned how to speak to my son differently. Just for instance, there was one time when he was living in a residence and his medication was supervised, and a friend of his wanted to take him to Boston for the weekend for a concert. And I was all, no, you can't, no, you can. I want to make sure you're gonna take your meds, you're gonna take your meds, make sure you take your meds. I was really helicoptering right in there, and I started thinking about the communication skills, and I said, you know what, honey? I'm sorry. I'm gonna butt out. I know you're gonna take care of yourself this weekend and have a great time. And I did not believe that at all. Like I didn't know.

SPEAKER_02 26:05

But I think that's about accepting the limits of what we can control. Yeah, because yelling at him and telling him to take his meds or saying, I know you're gonna take it doesn't matter. Either one doesn't affect whether he's gonna take him or not. So I think accepting those limitations are helpful for us too, and also probably for them.

SPEAKER_01 26:26

Yeah, absolutely. The best thing I learned about communication was to make it be me and Jim against the mental health system. So sit next to him, not across from him, and then sympathize with him and talk about the insanity of the mental health system. But I try to always be an ally and not the one that's dictating everything. So it sounds like we all learned that.

SPEAKER_00 26:52

Yeah, and reflecting back their feelings because we want to just refute. We you learn it in corporate communication, but I relearn it every time I teach family to family, not like that's crazy, but just like, wow, that must be scary, reflecting back. So S-E-A-R-C-H and H for hope and humor. I hope that in this episode two of our Schizophrenia Three Moms in the Trenches podcast, that we've shared a little hope and a little humor with you, and that maybe you feel a little more supported and less alone. Listen up for episode three. We're going to talk about what is schizophrenia, why the heck is it so hard to get a diagnosis, what do we know and what do we want to know? And thanks for joining us. 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 RandyK.com.