You Are Not Alone: On Grief, Guilt, Tough Choices…and Hope (Ep. 47)

Just the Moms, addressing Q’s and giving updates

We talk about:

• Our recent advocacy (legislation and keynote speeches)
• SEARCH: what families need (Support, Education, Acceptance, Respect, Communication Skills, Hope)
• Updates 
• 
  
• …and address e-mails and facebook comments like

Will I ever feel "normal" again? The grief and anger still take my breath away some days. I'm sorry to vent. I will start listening to the podcasts soon. Thank you!

How do you all prepare for when your sons get discharged from the hospital but you can tell they aren’t stable yet? I’ve listened to a ton of your podcasts and they are so enlightening- but I’d be interested to hear more of the technical details of transitioning a loved one out of or into the hospital and out of/into group homes for someone not yet familiar with navigating the patchwork of mental health services. 

What would we tell providers if we could?

Want us to cover a topic? comment to share?

Facebook page @Schizophrenia3Moms

@SZ3MomsTrenches -  twitter

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

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 0:00

So, what do families really need when mental illness strikes the family? We need support, education, acceptance, respect, communication skills, and hope, and yes, even humor. That spells out search. Every once in a while we do an episode where we look at our listeners' questions and comments and we just statting and see what happens. So we talk about grief, tough choices, especially after our loved ones are discharged from the hospital. We mention some keynotes we've recently delivered, and we talk about guilt and hope and finding joy. Welcome to episode 47. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. With Miriam Feldman, Mindy Gryling, and Randy Kay. It feels like forever since we've been together. And I saw this on the calendar, and I'm like, oh yeah, no guest. We decided we would do just us. So that's what we're gonna do. This is we don't have a title for this because we'll have the title after we talk, and then we'll see what the title is. It's just been so long and a lot seems to have happened. So I want to talk first of all, if that's okay, about Mimi's speech, what you did, what you spoke about, how it went, and then I'll talk about mine because I had some interesting experiences. And we'll just sort of catch up. And the other thing I have is a few comments from our growing Facebook page. Uh, people asking questions. And uh, would you do an episode on this? Would you do an episode on that? So I thought we could also talk about some of those things and just see where it goes.

SPEAKER_02 1:46

Sound good? I don't think we'll ever have a problem with things to talk about.

SPEAKER_00 1:52

All right, so let's start with Mimi. So tell us where you went, what you spoke about, what the reaction was, anything okay.

SPEAKER_02 2:00

So I went to excuse me, to the Community Mental Health Association of Michigan, and it was at Traverse City, which was quite pretty. Um never really spent much time in that area of the country before. So that was really nice. And um the speech was mainly just my story, that's what they wanted. So I just kind of based it on the book and just talked a lot about my story, but I also talked about closetine, and I also had to put political stuff in there because I mean I can't talk about this stuff without talking about that. At one point before I got there, I I looked in my speech and I thought, you know, this is a mental health organization. And I called the woman and I said, you know, maybe you want to take a look at this, because you know me, I can come off a little strong sometimes. And um you and so I sent it off to her, and then as soon as she said, okay, she'll take a look at it, and then she emailed, and she'll have her boss look at it too. And then I thought, oh God, what can of worms have I opened? Are they going to try and edit this? And nothing. They loved it and they said, Go for it. She said, The only thing is you are really harsh on the mental health system, though. And um, this that's who you're talking to, are CEOs of community mental health associations and things like that. So I did put a little caveat in there at one point of saying, I'm not blaming this on you guys. You guys are out there in the trenches with us really crying and dealing with the same pitfalls and and and hurdles that we're dealing with. So it went really well. Um, from my PowerPoint, instead of um doing charts or anything like that, I just thought, eh, I'm an artist, Nick's an artist, our whole family are you know crazy artists. I just am gonna show them pictures of my art and Nick's art and our family. So it didn't have any particular sequence or connection to what I was saying, it was just pictures. And um it went really well, and I got a standing ovation, which is pretty cool from my first speech ever. There were a lot of people, there were 500 people. It was a huge room. Wow, all sitting around tables. It looked like the Emmys or something. I mean, it was really a lot, but I don't know. I wasn't nervous, I was fine, and um it was it was great. And then when it was over, I almost walked off the stage where there weren't steps. I caught myself in time and I was talking to my daughter, and I said, Well, you know, I may be a big mental health advocate now, but I'm still meaning. Well, we're glad about that. And so um, yeah, so it was good. It was good.

SPEAKER_00 4:55

Did you get any like comments after the speech from what so did you kick off this convention? You were the keynote?

SPEAKER_02 5:02

No, actually, I closed it. I was the last closing speech. And um, afterwards we did a book signing, and I talked to a lot of people, and you know, it's the usual stuff. Oh my god, I've never heard somebody talk, and it sounds like my story, and you know, I mean, the thing that we all hear when we tell our stories.

SPEAKER_00 5:19

Yeah, so that's amazing. And I I'm so glad you did that. And if you're listening, I still am getting emails and comments from people, and I know you know, we're all admins of the page and we all respond of like, I just found your podcast, I don't feel so alone. And so that always does my heart good. And you know, getting back out there and telling our stories, that's why we wrote our books. Our stories are powerful. And so I presented to Fellowship Place, which we had an episode with Mary Guerrera talking about this amazing place in New Haven, and they had an open house and they asked me to come be the keynoter. I didn't get on a plane, I didn't go to a new place, but you know, but I've I've got to share my impressions with you guys with that. So I spoke about the effect of mental illness on the family, and so the audience was people, and if if you haven't heard our episode on Fellowship Place, uh check it out. It's one of the most well thought out, respectful, potential-building, helpful organizations and places where people with mental illnesses can go and feel like a part of a community and have what they need to get better. It's in New Haven, Connecticut, and the work they do there is amazing. And the comments we keep getting are where are there more places like this? And we did we've done a show on clubhouses, and clubhouses themselves serve you know, part of that as well. But this is a housing development and a clubhouse together. And I hadn't had a tourist since my book came out 10 years ago, so it was great to get another tour, and maybe I don't know how to maybe maybe I'll add some of the pictures I took to our YouTube version of this so that people can see. You know, it's like you just go into a place and uh um on the bulletin board, I want to just uh uh give our oral only, audio only listeners just sort of a taste. And when you go to the bulletin board and they put up tomorrow's schedule, I'm just looking for it here, and it says, you know, 9 to 9:30, breakfast, 10, 10:30, 11:30, men's group, 10:30, 11:30, a women's group, and then lunch, then there's book club, one to three, basketball social, one to two, spelling bee, 1:30 to 2:30, computer lab is open one to four. I mean, just like to see a lot of things. That's a typical, typical day. And then they had the artwork of there's a huge art room in there and beautiful, beautiful artwork for sale. And, you know, just then on the bulletin board, why I want to work. So somebody posted money to find a girlfriend, to be motivated to get up in the morning, uh, you know, something to do, um, to put a smile on a kid's face. Like it was just so lovely to see it again and get that tour again. And they have a facility for just for homeless to come and do their laundry and have a shower and get a meal, and just it was it's a wonderful place. So I did a presentation about the effects of mental illness on the family, and in the audience were practitioners, members of their clubhouse. So I did get questions from people with diagnosed mental illnesses, family members, um, readers of my book, listeners of our podcast, and of course, the people who work there. There was one girl who raised her hand during a QA. And I I had met her in the open house because she was sort of tagging along and she's has schizophrenia. And she raised her hand and she said, I was just wondering because I can't get my parents to talk to me. They don't believe I have schizophrenia. And I'm just wondering if you're looking to adopt any daughters. And she just about, you know, warmed my heart and broke my heart at the same time. And I said, you know, I thanked her and said, I don't know how to tell you to convince your family. We usually have the opposite problem that we can't convince our loved ones that they have an illness. Uh, perhaps you can turn them onto our podcast. Perhaps there are books you can mention, or perhaps you can just embrace the family you've made here at Fellowship Place. But it was just, and then someone else came up to me with my book in hand and told me that she had read my book 10 years ago. It was the first thing that ever gave her hope, and she was crying and her son's doing better and he's working. And so that's what we are all trying to do here. So in the speech, I spoke about um what families need when mental illness strikes. And if we run out of conversation, we'll go back to that. Maybe you guys can add some tips. But it spells out the word search and it's support, education, acceptance, respect, communication skills, and humor and hope. So that's just an overview. Um, my son got a job today. Oh, yay! I think I see if on YouTube you can say I've got all my fingers and toes crossed, but um he's had a hard time. He hasn't been as accepted. His quirkiness has not been as accepted by the places he wanted to work at. Um, but you know what? He kept going and he kept trying. And he's, you know, I'm going to be working in a huge retail establishment, but minimum wage is better than it used to be. And the restaurants he wanted to work at didn't say yes. One of them asked him who the vice president was, and he didn't know. And so I think they just felt he wasn't savvy enough. He knew the president, so that's good, but he doesn't pay all that much attention to that's kind of a weird interview question.

SPEAKER_01 11:31

That's a weird question to ask for a job interview.

SPEAKER_00 11:35

You know, I have to say that I don't know how he comes across on a job interview right now because he's on a different medication than when he was waiting on tables before. And but I'm very proud that he kept going. And he promises me he just took a drug test and he's going to be clean because I'm postponing his birthday present until I get one of those. And uh anyway, that's where we are. Mindy, how are you? Well, I'm good.

SPEAKER_01 12:02

I think you guys are better at uh promoting your books than I am, but I have um had some speaking engagements. I've done the League of Women Voters, I have the Rotary coming up, but the one I'm more excited about is um we have Judge Steve Leifman coming to Minnesota. He's the guy in Miami Dade who um worked with Norm Ornstein on the documentary, The Definition of Insanity, if you saw that. So Judge Lifen will be here. Norm Ornstein will be here. It's going to be at the Minnesota, the Hubert Humphrey Institute, the place where my book launch was going to be, but it had to be me sitting where I am right now because of COVID. But um, this is going to be a really big deal. And we're uh inviting legislator city council people, and we, you know, you guys are better at marking your books. I'm the advocate, you know, the one who's working on legislative stuff. So we're trying to get um uh, and then our attorney general uh Keith Ellison will be there. We're um trying to get elected officials and um at the local, county, and state level to pay attention to the problems of criminalization of mental illness, anasygnosia, the fact that families you know can be banging on the door and nothing can be done if you are in um you know a state where the laws don't match uh reality. So I'm excited about that. Um, but what I'm also excited about, and I've if you looked on my Facebook at all this week, which maybe you haven't because you're too busy, but um the NAMI Ramsey County, where I just finished being president, now I'm in charge of our project to get a clubhouse international in our oh great. Remember when we had our meeting with Joel Cochran, and he asked at the end when we were finishing, he thought we would ask how to start a clubhouse. And we hadn't thought of that question, but he's the one that got me interested. So now um we have toured the one of the clubhouses in the neighboring county, and then this past week and then last week, we've been systematically meeting with each county commissioner and the administrator who's in charge of adult mental health. And we've had with us a member of the clubhouse who herself has a mental illness, of course, as all the members of the clubhouse do. And when we share our stories with the county commissioner, she is the absolute best one. And she goes through, you know, in a very eloquent way, the reasons for a clubhouse and the kinds of things she talks about. The biggest thing is the fact that a clubhouse is not a doctor or a social worker on top and the person with mental illness on the bottom. They have an equal relationship. So if they're making decisions on the board, uh the clubhouse members could outvote the staff. There's more clubhouse members probably on the board than there are.

SPEAKER_00 15:18

Well, that's you know, that's amazing. And please keep us posted because you know, hearing how you go through this process will be helpful to everybody. If you are listening and you don't know what we're talking about, we encourage you to check out the episode about the international clubhouses, because these are places where people with diagnosed mental illnesses are members and they also receive the same sort of things we were talking about with fellowship plays and places like that: a place to reach your potential, a place to explore your potential, a place to have friends, a place to belong, a place to just be. A place to just be. And so thank that's very, very exciting. And you know, I that is exciting. I have to sort of say, I'm not that great at marketing my book. Uh, it m we always make it sound better than it is, but I love to, you know, I love to speak. And the one thing I did with my book that finally got onto Audible is I redid the audiobook version of it to update it. So my book came out 10 years ago. But if you want to hear the updated version, it's only on audiobook and in my voice. And so you can get that on Audible, then behind his voices. And uh with the See, right there, you're better at marketing your book. I forgot to even say my title. Fix what you can. I will put the picture on the YouTube as I always do. So that's very exciting. And I I I want to uh bring up something that came up on Facebook and just have us chat about it because it it really touched my heart. So this is from someone on Facebook and asks us if we could talk about I'll just read it, read it. How do you all prepare for when your sons get discharged from the hospital? But you can't tell if they're stable yet. We haven't, you know, he asked us to do an episode on this, and right now we don't necessarily have a guest, but we can kind of answer James's question right now. He says, I've listened to a ton of your podcasts. They're so enlightening, but I'd like to know more of the technical details of transitioning a loved one out of or into the hospital. You know, again, we can only share our stories, James. We don't, and we we live in three different states, and you know, things are different. Mindy knows more about this from a legislative point of view, obviously. But um, I think each of us can share some of our stories. Um, Mimi's son doesn't live with her right now. Mindy's does, sort of. Mine doesn't, but has. So we can talk about the and I will uh uh just add to this before I open it up here that there was another thread on Facebook. There are a lot of groups, you know, families dealing with serious mental illness. There are a lot of groups where people are talking and giving each other support. And one woman was saying, I believe it was a woman, could be a father, but I don't know that you know, she she's having a real hard time with her particular son living in the home with her, and that she's scared, but she wants to stand by her son, stand by her son, and uh, you know, doesn't want to kick him out. And uh a lot of the thread was, you know, you gotta stand by your son, you gotta stand by your son. And I said, you know, there are ways to stand by your family without allowing your son to live with you. I just said, you, you know, I I don't know your situation, but I have to say there are ways to stand by someone and also provide boundaries that that there may be other people in your family to consider. And sometimes finding your loved one another place to live is the best way to stand by them. So I didn't get much backlash. I got a few likes and loves on that comment, but it was kind of the black sheep in that thread because it uh, you know. So uh what about that?

SPEAKER_02 19:16

Say something about that. You know, I think that we need to be honest and realistic about this. And the the template that applies to other families doesn't apply to us, you know. Um there's there's a dynamic of your kid is sick, and even if your kid's an adult, it's your kid and they're sick, and you're supposed to take care of them, and that's what society expects of you. But you even said she said she's afraid. I mean, there is nobody uh nowhere is it written that you're supposed to put your own self in danger, and this disease often creates that. And um, I think that we need to give ourselves permission to protect ourselves and to protect our families. You know, um, Nick hasn't lived with us since he was 18. You know, he never came back. We always provided him with an apartment, but um, you know, it was not hard for me at all. I made up my mind when Nick was 18 and I had a 14-year-old and a nine-year-old in the house, that my daughters had to be safe in their own home. And it broke my heart. I can't even calculate what it cost my soul to ban my son from the premises, but I did because they had a, you know, there's a hierarchy, there's a Sophie's choice thing that's in all our lives now, and we have to be honest about it. And I think that we're not giving anyone any help by pretending this isn't true. We have to make tougher choices.

SPEAKER_01 20:54

When Jim is uh he's doing really well right now, so that's why he's able to be here. But when we were afraid of him, and longtime listeners of this podcast know that Jim had delusions, that he had to kill me in his early years with schizoaffective disorder. So, and then he had um, you know, vivid command voices where he did do some really terrible things, always to himself, I might add, like burning his arm every day with the same cigarette lighter and so forth. But um when I was afraid of him, I did not wait until it was time for discharge. The minute he got out of the hospital into a place, I went there the very first chance and said, We need to start working on a discharge plan right now. Because when he's done here, however long he can be here, I hope it's a long time, then he's going to have to go somewhere besides our house. So that would be my strongest recommendation. Don't wait until it's time for discharge if you. Are not going to allow your uh family member to come home. Start working with them right away because they'll assume you are taking them home, and that is what they will do, unless you insert yourself.

SPEAKER_00 22:14

I s I would say that uh I feel the same way. And in my book, I do tell the story of the first time I had to say that. I mean, we went, we ran the gamut from, you know, before the before Ben was sick enough to, you know, and I'm using air quotes, you can't see them on the podcast, but you know, sick enough to be hospitalized, I was trying everything under the sun, as we all did. And the therapist that said, Oh, just find him an apartment. The problem is, you know, you're too of a much of a helicopter parent. You know, if he's in his own apartment and he's in, you know, I'm like, fine, fine. We'll get him his own, you know, I'll pay for three months' rent. You know, we found him a place where he was on the bus line. He could have gotten a job. And if he just took his meds, he would be fine, but he didn't take his meds. And, you know, the stories, there's a million stories in the naked city. Oh, am I dating myself? But at any rate, the that's um, that's the story you hear a lot. And it was in his own apartment, finally, that he didn't take his meds enough to be stable enough, and he was finally hospitalized. And five times in one year, and every time he got discharged to his own apartment, or sometimes to us, but even in his own apartment, there was no supervision. There was no way for him to take his med. So the fifth time when we were out of private hospital stays, we were in state care, like we ran out of money, we ran out of charity. He was finally in the the hospital with the plastic chairs instead of the cushy armchairs. And um, and he finally began to stabilize uh uh on closeral at that time. And as you guys know, we don't, well, we do really like closerol, but you know, we're not here to promote any particular medication. My son is not on it right now. And whatever works for you, I met someone this week who said my son's on an abilify injection and doing great. So whatever works for your loved one is is the best thing. But at the time they went in for a discharge meeting because he was getting there, and I they said, Can you know, is he coming home to you? And I said, No, he doesn't have a home, he's homeless. I have to use it.

SPEAKER_02 24:29

And you know, when you have to do those kind of things, you you immediately you feel like a monster. You know, in society, people don't behave that way, and we were raised with that, but we're we're on a different game board here. You know, one time with Nick, when we finally got him um DHS assistance after 20 years of me going to his house every day. What's DHS? Uh Department of Health and DHFS, Department of Health and Family Services. It's the caregivers. You know, I've been doing that up here when we moved him up to Washington and kept his house clean as a pin, and I, you know, kept everything in order and everything was nice. And I thought, you know, they're gonna show up and they're gonna see this and they're gonna say he doesn't need help.

SPEAKER_00 25:17

He's fine, right?

SPEAKER_02 25:18

And so I didn't do anything dishonest, but what I did is before that appointment, for like three and a half weeks beforehand, I didn't do anything. I let him go back to his natural habitat, and it was appalling, but it worked, and it wasn't fake and it wasn't a lie. But I mean, the thing is, if we do everything, we'll never get help, and I'm not gonna be here forever, none of us are exactly so.

SPEAKER_00 25:43

I, you know, I applaud, and this is one thing that I think we can do a service to the community by talking about providers who do things right. And so at that time, the social worker after that meeting pulled me aside, and I thought she was gonna tell me, How can you do that to your son? Like I thought she was gonna judge me. She said, I just want to tell you how much I applaud what you did in there. I said, Really? She said, I've been working here a long time. Do you know how many? And my son was 21 at the time, he's now 40, but she said, Do you know how many people come in and out this revolving door over and over again in their 40s and their 50s because they keep going home to their parents and they don't do what they're supposed to do. So you have given your son a chance to find his independence, and I applaud you. And that's when I burst out in tears because be nice to me, that's when I'm gonna cry.

SPEAKER_01 26:37

Well, that's always the way when they're nice to you is when you cry. That is so true. And I think the providers know that. The other thing that I do and have done, I don't have to do it, haven't had to do any of this for the last three years. But what I used to do is not just wait for them to find places. You know, the case managers have databases and lists, but I have found that they have I have more time and um resources to be able to find suggestions for where Jim could go than they do. So all of us who are savvy do not wait for the professionals on doing the air things too, uh, to find places. Scout out things yourself, and they will be happy and relieved if you can find someplace and suggest it.

SPEAKER_00 27:29

Okay, that's great. And is that something Nami can help with?

SPEAKER_01 27:33

Any place you could go, you know, ask other the best place I ask is other family members, actually. Um other family members and people I know who are social workers, and where would you put your child? And you know, that's a whole different answer than what you might get for your choices if you put it that way.

SPEAKER_00 27:53

I just think um resourceful families need to use every connection they have when you're advocating for your and just to be, you know, we have spoken in past episodes about some success stories. And yes, there are the private facilities that I can't afford, and you know, a lot of people can't afford, but some can that are 10, 20, 30, $40,000 a month and they work miracles. But when you're doing your research, look for the places that maybe state run. And, you know, if your child is, I do know families whose kids are under 18 and they have to like declare them a ward of the state and kind of disown them or disavow them, or however you do it, find a way to to transfer your loved ones' care to the state so that they can get into a state facility. But I love your idea of suggesting if I had my choice, this is where I think my child should be, or my husband should be, or my or my mother should be. I mean, we know we are three moms, that's who we are, but there are other people going through those situations. I actually also suggested to Jim.

SPEAKER_02 29:05

Pardon me. Well, we both talked at once. I was catching again. Don't feel guilty. You know that you're doing the best thing for your kid, and um, society's opinion of that doesn't matter. If society was so great, society would have created a good mental health system and it hasn't.

SPEAKER_01 29:25

Exactly. And I I was gonna say then, I don't just give my suggestion to them. Sometimes I give it to Jim, because the mental health system listens more to the person with mental illness than they do to the mother. And I was gonna say about Randy, the ward of state business, we don't have to do that here in Minnesota. So that's the beauty always of this podcast is other states are different, and some things are better in one place than another or worse. And so hopefully you could get rid of that having to do that in your state. Because that's very sad. Most of ours are not state run in Minnesota, they're county run, which is why we're lobbying our county for things that we want.

SPEAKER_00 30:07

Right. And that's the beauty of the three of us being from three different states and uh and interviewing people very early on. We talked about where was what country? Um Romania. Romania, you know, that things are done differently in different countries, and maybe we can get some ideas, but certainly check with NAMI, the National Alliance of Mental Illness, in your particular state. They can offer legal information, they can offer legislative information and see what's going on in your own state. We had three different experiences, except emotionally. And so, you know, you're there is so much comfort in advocacy. And when you get to that point, when you're in crisis, it's different. For instance, on Facebook, we had another comment that said, uh, will I ever feel normal again? The grief and anger still take my breath away some days. I'm sorry to vent. I'm gonna start listening to more podcasts soon. Thank you. Um, so I just want to put that out there while you absorb that. I want to share one other little story having to do two actually having to do with past guests. And I do encourage you, dear listener, to look at past episodes for, you know, for a topic that really touches your heart or touches your particular situation. We did interview the most amazing judge, Judge Lisa Wexler of Connecticut. And we made it a two-parter because it was long and there was a lot to say. She was so great. She was so great. And, you know, again, talking about what gets done right. So I had to, she is the judge in charge of um my conservatorship with my son. And so I had I had to fill you, fill out a form, what's going on, the finances, blah, blah, blah, blah. And I get a call from the probate, and I'm like, oh, what I do wrong, you know, what didn't I fill out correctly? And the person says, No, I'm just calling, um, you know, on behalf of Judge Lisa, and she, you know, she read everything's fine. She just wants to know, could your son use any job coaching? Because she'd be happy to set him up with something. Like it was just so I don't know how she does everything. She's got a radio show every morning and she does the judge thing, and then she has a chance to reach out. So it's just such a wonderful thing when something like that happens. We also had um Mike Magnac on, who is with Melissa's Project in Connecticut, and he emailed me this week to say people are still calling his agency because they heard about him on our podcast. So we're delighted to bring you guys resources. So, anyway, let's go back to this kind of newbie in this in this um family situation, and says, Will I ever feel normal again? The grief and anger still take my breath away. Yeah.

SPEAKER_01 33:01

I think we all remember that feeling so well. And it goes on, at least for me, for the first few years before it went away. And then every time Jim relapsed, it would return.

SPEAKER_00 33:17

Yeah.

SPEAKER_02 33:18

I you know, I think we all have to just like make friends with the uh term the new normal because that's our only option. Oh, excuse me, as much as I have my moments, um, like we all do, it does get to be pretty normal. You know what I mean? It's just this is our life, you know. Um, I think if you had a kid who had an accident and was in a wheelchair, you know, you you I'm constantly amazed at what we can get used to, you know, and live with and still have joy. Because that's the thing. I know what she's asking. She's asking, will I ever be happy again? Will I ever have another carefree moment? Will I ever not be worrying for one second? And the answer to that is absolutely, yes.

SPEAKER_01 34:14

That's what I was gonna say. The good news is, and I've been in that state for the last three years. I mean, Jim is 44, it took a while, but um, when his meds are right, and you know, for him it's clozepine is a miracle drug, and he has the right supports and he's working, then um it can go on and on and on. I still hope and pray he doesn't have another relapse at some point. If something happens, you never know.

SPEAKER_00 34:42

Yeah, absolutely. I think you know, we have talked about this before, and you know, grief takes time to process and you never get over it, you carry it. And there certainly is, you know, again in that comment, grief and anger. And there's a lot of things that that families feel grief and anger and loss and disappointment and fear and frustration and growing, going broke, and you know, all of those feelings. Um, we talk about when we all get together in support groups or family to family or anytime we're together. But for me, it helps when we're having a good moment to not let my mind skip ahead to what if next week isn't as good as this week? I mean, that is what really last Sunday, and every time I pick my son up, I'm like, how's he gonna be? You know, is there going, you know, because he is on an injection, which is great, but also as it starts to kind of wind down, there's a mmm, can he have you? So there's sort of a period of like, is the time release working properly? And there was just we had a lovely, like we were just sitting around on the deck, and he was playing with his nieces and nephew, and they were like, Oh, Uncle Ben is here. They were so excited. And I was like, Oh god, this feels almost kind of like normal. And like you said, Mimi, it's it is the new normal. It's a it's a different kind of normal to get used to. There was so much joy in that moment that we could create a new memory. That's what was huge for me, that we could create a new nice memory together as a family. Will it be the same next Sunday? I have no idea. Will he keep this job he just got? I have no idea. But I had if I can get another good new memory and just add it on to my charm bracelet of good moments, I'm glad to get a new because there were times when I thought I'm never gonna have another good memory with this kid. It's all just gonna be responsibility and fear. And there is always hope. And shout out and respect to the families who have lost their loved ones fully to this illness, to the point where they've committed suicide or you know, they've died for other reasons. And we know that for you, the hope takes a different shape. It takes the shape of just getting used to the loss of a more final kind.

SPEAKER_01 37:20

And so one of the commissioner, one of the county commissioners that we meetings today, one of the women there, her son had died um by suicide when he was 23, just a year and a half ago. And here she is still advocating for a better mental health system for other people. I'm not sure if I would be that altruistic and strong, but she is. And so it's a uh it's it's quite something to behold. Well, like Jerry Clark. Yes, exactly. She's this, this woman is the same type of person as Jerry Clark. Um, but I'm I'm Jim is doing so well right now. We have so much joy that I have to say, when I'm at these groups, when everybody else is telling their stories, I'm beginning to feel guilty because one group I met with this afternoon, not the commissioner group, but one of my support groups, somebody's 23-year-old son is missing and has been for over a month. Someone else relapsed on meth. And you know, everybody has something. And so I don't uh share much about Jim. Instead, I talk about what I'm working on with the clubhouse or something because I'm to the point where I feel guilty, Jim is doing that.

SPEAKER_02 38:35

Which you know what, that's a really sad thing to stop and consider for a moment. I know it, because we live in this world, this, you know, of our brethren, our people, our tribe, who we we have to feel guilty in a situation like that, you know. And you know, I had a thing that used to happen back when things were a three-ring circus, where every time I get together with friends and have like a moment to relax, anything anybody said, they'd preface it with or stop shortly afterwards and say, Oh, but I I mean it I know it's not as bad as what you go through, Mimi. And, you know, at one point I said at one part I said, all right, announcement. Just because my son has schizophrenia does not mean that you have to be happy about getting a speeding ticket. Talk about it, complain about it, it's okay. And and I think, you know, our friends freeze up, and I mean, it's it's it's it's a sad uh reflection of what this does to a life.

SPEAKER_01 39:34

And if I were in any other group besides a group like ours or like the ones I was in today, where everybody's children have schizophrenia or bipolar disorder, then it would, then I wouldn't feel guilty. Then I'm the odd person out in that regard. Some my son is working halftime at minimum wage, and you know, he's um there's just no comparison to the the other type of kids. But in our groups is when I have to resist, I guess, feeling feeling guilty.

SPEAKER_00 40:05

Yes, so great. So I'm I think this has been so nice to just chat. What's coming up is we are having Norm on this show coming up, right?

SPEAKER_01 40:16

Oh, that's right. He's got the yes, I'll see him on next week where he's in Minnesota, I think. I will, because it's the end of July, right?

SPEAKER_00 40:23

Yes, and uh is that July? Oh oh it's almost the end of June already. Okay, and we do have my cousin Danny coming on to talk about SSI and SSDI. So we have a practical topic coming up. When Norm comes on, he's going to be talking about.

SPEAKER_01 40:39

Um, I think he will be talking about what he's always talking about, which is their son, Matthew, had anasygnosia. He did not recognize he was ill. And in their state, they could not get help for him. I'm sure Judy Harris, Norm's wife, who's on coming on the program too, might say her typical line, which is our family can call into the White House. It doesn't matter who the president is, but for our to get our son help with his mental illness, we couldn't get no one would listen to us. We couldn't get any help. So their son died. He did not commit suicide. They may choose to talk about how he died, um, but it was an accident. Um, and it's in the book, the deaf bedlam is covers that story. It's also in the documentary. No, I think they cut it out of the documentary, but it's in the book Bedlam. Um, so that's what we talk about with them.

SPEAKER_00 41:39

Yep. So that's coming up. So, you know, subscribe to our podcast. You'll know when there's new episodes, and subscribe on YouTube. And uh, we are having Pete Early come on next month as well, and we'll talk about more on the dad's point of view. And also, he's an investigative reporter, talks a lot about the jail system and the mentally ill. So we have a lot of great stuff coming up. I want to um just close with asking you if you want to just add a little word or two. When I talk about what families need, the first thing we need is support. So, what I told them at Fellowship Place is don't shut us out. Give us resources and information, tell us about support groups, tell us about NAMI. Um, you know, and that kind of ties into education. Give us info who to call and when. And um and under acceptance, I said tell us the truth. Accept our grief. Listen to our reports if we have something to tell you about what we observe. You're nodding heads, so that's good. Uh the R and search is for respect. Don't assume it's our fault or that we're too controlling. No HIPAA and know what what information you can give us. Uh, communication skills, help us learn, recommend books like I'm not sick, I don't need help, leap training. We did have Dr. Amador on the show, um, Family to Family, and then hope. Don't laugh at us, but help us laugh together if possible. Tell us about some success stories, remind us that this takes time. So those are just my final tips. Um, anything to add to that? Was that pretty much covered?

SPEAKER_01 43:28

I think that was a complete list.

SPEAKER_00 43:32

All right. Well, guys, I have missed you. Um, we have a few more episodes of season two. I don't know how we're, you know, the season is 25 episodes, is what we decided, right? So we uh we will definitely meet that. And uh we are looking forward to having additional guests on. If there's any topic you would like us to talk about that we haven't, or any guests you think we should have on, please contact us. You can go on our Facebook page, just Google Schizophrenia Three Moms in the Trenches. Um you can comment on our YouTube video, our Facebook page, subscribe to our podcast. We appreciate your ratings and your reviews. And thank you for listening. 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 MiriamHyphenfeldman.com, mindygryling.com, or randyk.com.