New Challenges, New Hopes, Some Advice: Season Six Peek - (Ep. 126)

Moms kick off Season Six, with a sneak peek back at the past few months, and a look ahead.

Coming up: ECT, new research, microdosing?

What would you like us to cover?

Contact us on our facebook page, or via any of our websites. 

https://www.randyekaye.com/schizophrenia-three-moms-in-the-trenches

or write randye@randyekaye.com

Links:

Corey Minor Smith Panel on Homelessness:

https://www.youtube.com/live/PJo8v5orjPk?si=W1Ae9bvw0FVjEI1M

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_02 0:01

If you're a member of a family dealing with serious mental illness and a loved one, you are not alone, and the three moms in the trenches are no exception. The journey through this challenge is, as always, like a game of shoots and ladders. And the past couple of months have been no exception. Here we talk about new challenges, new hopes, new episodes coming up, and a bit of advice if you're also in the trenches. Welcome to our podcast, Schizophrenia: Three Moms in the Trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. Well, we are back for season six of Schizophrenia, Three Moms in the Trenches. It's been a two-month break, and a lot has happened in those two months in our government as well as in our lives. And we will have our first official guest next time, where we'll be talking about ECT, which many of you have asked us to cover. But we thought, since it's been two months, that Mindy and Mimi and Randy would just have a little bit of a catch-up and talk a bit about where we've been and where the podcast is going and what we're dealing with right now. So uh if you are brand new to our podcast, and I have to say I've I've started to hear from people who have just started from episode one, and you have 125 hours worth of things to listen to. So if you're not there, if this is your first time trying us out, welcome. Let me reintroduce us. I'm Randy Kaye. I am the author of Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. And that book is now 12 years old, although there is an updated version available on an audiobook, but even that's like two years old now. And I'm here with uh Mindy Gryling, author of Fix What You Can, and Miriam Feldman, author of He Came In With It. We are three moms. We love our sons. Each of our sons has schizophrenia. And we have many episodes for you to listen to about everything ranging from social security to crisis to conservatorship to different medications. We have a wealth of information for you to search back and look at, but we want to keep going because the stories keep going. And for this season six, we are going to reduce the number of episodes from 25 to about 10 so that we can really focus on the things we haven't covered so far. So welcome back, Mimi and Mindy. I've missed you guys. We missed you too. Me too. So what we'd like you to do as a listener, you can check our website to know how to reach out to us. You can go to our Facebook page. All that information is there. If there's something that you would like us to cover that we haven't already covered, we are happy in this season to bring on experts about things like ECT. Many of you have mentioned you might want to learn about microdosing. And I all we can do is bring in the experts because we're not experts. We are moms and caregivers and advocates and legislators and artists and you know, we're and educators. And so we want to bring you what you need and also keep you up to date. So I uh it's been two months. So when we last had our closing episode of season five, where we were was Mindy. Jim was in housing.

SPEAKER_01 4:03

Jim was in housing, and finally, and we are ever grateful he's still in housing, and but we get more and more concerned um as we go along, much more concerned than even two months ago, that he isn't partaking of anything there, and he hasn't been going to work, he's not eating properly. And Dr. Leitman, who is um his doctor that we've had on this program, said something I didn't know. You know, you can have anasygnosia about not taking your medications. I am not sick, I don't need to take these pills. But he said anasygnosia also can apply to, because Jim does take his pills, but it also can apply to what Jim is doing right now in his housing, not thinking he needs the other supports, things like socializing and all the negative symptoms that are so concerning. Um you can have anasygnosia then with those negative symptoms about not doing things, not taking a walk, not getting in the fresh air, not getting exercise, not um eating balanced meals, and mainly not socializing. Jim is um in his apartment isolating, and he's getting more and more depressed, but he doesn't realize it. And the mutt this place asks him to do things all the time, and he's declining. And Dr. Leitman said that too is anasygnosia.

SPEAKER_02 5:42

That is news to me. So if you're new to the podcast and new to anasygnosia, it's it's a lack of awareness that you're ill. And we've always talked about it in terms of I'm not sick, I don't need help, the wonderful book by Dr. Amador. But I never realized that yes, it can also apply to I don't need services, I don't need those classes, I don't need friends, I don't need wow. Exactly.

SPEAKER_01 6:08

So so we're I just feel very sad about that. Um, because I feel powerless as a mother to do a thing about it. I can talk till I'm blue in the face and I get this feeling that that actually is digging the hole deeper.

SPEAKER_00 6:25

Yeah, into that one.

SPEAKER_02 6:30

I feel like our sons, who, you know, by the way, if you don't know us and haven't read our books, our sons are grown chronologically, they're in their 40s, and uh, Jim's a little older, I think, right? My son's 43.

SPEAKER_01 6:42

Jim Jim just turned 48 in October, so he is almost halfway up to 100.

SPEAKER_02 6:50

And and uh how old is Nick, Mimi Nick just turned 40. Okay, so our sons are in our 40s, and we are hearing from a lot of people who are smack in the middle of crisis, and a place we go again and again where I was two months ago, and people who are just starting this journey, and so we always hope to share what we've been through, but also what we're going through, because we go through periods of great hope and progress, and then we go through periods where things get bad again, and we have to bring out all our skills and and work it through. So, did Dr. Layteman uh recommend anything you can do for this type of anosygnosia, or just be aware that that's what it is?

SPEAKER_01 7:44

Well, he actually came to a meeting by Zoom that we had uh last month and then recommended some goals for Jim, just the basic things, like maybe do one thing, accept one opportunity at Rising Cedar. And um the very next week, Jim's worker, you know, usually they're going through you could do this or this or this. And in this case, he just said, you know, what's your one thing for this week? And then he named two things for Jim to pick from the Halloween party or something else. And put that way, Jim knowing it's a goal, he should do one thing per week. And he only had two things to pick from. He picked the Halloween party and he went and he had um half an hour of socialization. The second week, not so much. He didn't do anything, but he got together with a longtime friend, and so um, probably the main only friend he has left, and they got together. So Jim counted that as his one thing. So having goals concrete, not too hard, that seemed to work. And then he's also supposed to be doing some other things, which we haven't had so much success on. I had a follow-up meeting on the invitation of the housing staff with three top people there: the head nurse, the person in charge of um of uh other things. There were three of us, and um, we again went through. And I tried to make the point that Jim doesn't want to always be asked for help about his medical things, you know, or even keeping his apartment clean or anything. He's more looking for a friend, and he doesn't consider staff his friends. He wants to make friends with somebody there and could they help him with that? And um, so that's something they're going to work on and see if they can find somebody else who lives there. There are 40 people that could possibly um, you know, they could encourage to knock on Jim's door and just invite him down to the next party or something. So it's baby steps. Um, and I don't know if that will work. Everybody there has has issues, but it's something that I am doing all I can, and I that is all I can do. So I'm it's kind of up to them and Jim now. And that's that's kind of a hard place to be because I am a fixer if I can.

SPEAKER_02 10:16

Guilty, guilty as charge. Yeah, it is, it is as moms, as parents, we are, you know, when they're little, we fix everything, and then they get older, and that's one level, but then they get schizophrenia, and that's another level. And it's it's always that balance of stepping in, letting go. We essentially have emotional teenagers as sons much of the time. And so, yeah, I feel you. How are you doing, Mimi? How is Nick?

SPEAKER_00 10:54

Nick is a status quo. Um, again, our biggest issues are um the negative symptoms. Uh the contopine has pretty much addressed the positive symptoms, but it's all the same things that Mindy's talking about: engaging with other people, doing activities, doing exercise, getting out of the apartment. He's very happy just sitting on his couch. And he, I mean, he doesn't even really watch, like, he doesn't watch TV shows, he just will watch like music on the television or he'll watch old sports games. So, I mean, it's not even stuff he's particularly engaged with, but you know, and then of course I feel guilty because I feel like okay, well, I should just go there every day and do something with him and get him to do something. And then I try doing that, but then you know, then he doesn't, yeah, he doesn't engage with me either and doesn't want to do it. So it's just it's very frustrating.

SPEAKER_01 11:55

Sounds familiar.

SPEAKER_02 11:57

Yeah, there's a there's a level of um continuous acceptance, I think. Like, is this as good as it gets? Can we make it any better? What if we step back? I I have to say that in the last two months, uh, and and this is good news if you're listening and we've depressed you already. Um in September, I believe my son was back in jail, was he not? I don't know. So um i if you are new to the podcast, and even if you've listened to the updated version of my book, where my son was doing pretty well, but he he was let me back off and say that there's a lot of issues in the news right now that I feel are so helpful to my son. First of all, we have spoken about crisis intervention training for the police. I found out from my son that the reason he stopped being homeless after three months in the winter sleeping in bank vestibules was that a police officer came up to him in the middle of the night and said, Are you cold? Are you hungry? Here's a place where you can sleep for 24 hours. And he brought him to an agency where uh which I have since visited, where everyone there just wants to help people who are homeless. If you don't want services, if you have services and asygnosia, you can stay for 24 hours, and in the morning, when you're well rested, you can say, Yes, I need help, and if you don't, at least you got a good night's sleep. And so uh he went there and refused services, and but through the kindness and the training of a police officer, he got a good night's sleep. And because he had such a good experience there and wasn't pushed into anything, another week out on the streets, he came back of his own accord. And at that point, he did accept services, but not medication. He accepted services. He said, Well, I'll take therapy. At any rate, um, and again, if you are new to the podcast, I suggest you go back and listen to the episodes we've had about guardianship, conservatorship, um, what's going to happen when we're gone. We have a lot of things about sharing responsibility for caregiving with other people. And because I am his co-conservator of his person, this agency was so good and sneaky and legal about contacting me and letting me know what was happening. And they found him a place in a sober home because it turns out addiction was a huge, uh, even a bigger problem than I thought. Where he did pretty well. And eventually they said, We like you, kid, but you're talking to your voices and it's bothering everybody, and you got to go for meds. And he showed up somewhere and said, People want me to go on meds. Not I need meds, but people want me to go on meds. I'm like, okay. And he is not on clauseral, he is on uh a long-acting injection. For him, it's doing okay. And um, that's why he went back on. And is it perfect? No, but he has a several failure to appear in court on his. So I got another call that he was arrested again on failure to appear, and um then went back to jail, familiar. But um, but the charges were less this time, anyway. At any rate, he found a way to bail himself out, and I got knocked wood, I'm knocking wood all over the place. He is motivated because of kind police officers, because of um the community of sobriety, which he is much more willing to accept than the community of mental health help right now. His thing about group homes was oh, they're boring, I don't need it. Um he recognizes that that he has an addiction issue and he's willing to work on that. So I'll take it. I mean, this is like a series, my friends. I'll take it. It's good enough for now. It's a clearing in the woods, you know. And um, and a shout out to the value of something I just heard about on the news today called Relentless Out Outreach. It's something they do in California where they do have AOT, they do have a legal place for assisted outpatient treatment where court ordered treatment. But it as they said, it's easy to it's easy to um say we're gonna do it, but it's hard to enforce it. So there are a lot of social workers. They had, and I will tell you if you uh this was on all things considered on NPR. You can look it up yourself. California's um program of relentless outreach are social workers. The guy they interviewed had a brother with schizophrenia and said, I don't want this to happen to anyone else. And they go out and they actually will visit someone who's homeless like 25 times until they know each other. And on the strength of that relationship, again, going back to I'm not sick, I don't need help, sometimes they can get people to come in for help or come in out of the cold, and it it's working. So, at any rate, homelessness is in the news a lot these days. And I have to say that at the moment, because my son has been told if he wants to never go back to jail, and he never wants to go back to jail, he has to, for a period of time, stay in his meds and stay sober. And um one slip up and he's back in jail. And right now, that fear is a big motivator. I'm telling you, I never thought I'd have him back. I thought I was done. I thought I was gonna have a shadow of my son, and I don't, I never know how long it's gonna last. But right now, he has had a ponytail since he's 19 years old, and he got a haircut. Now, this this is huge, very symbolic. Yeah, I think, you know, I think he thought like his strength was in his hair, like Samson and Delilah. I don't know. I don't ask, don't ask, don't tell, but it was something he would never, he would never even get a trim. And he said, you know, can you get this tangle out of my hair, mom? And I'm like, I'll try. I, you know, I'll try. And I I put in shampoo and he goes, let's just go to the barber. And I'm like, there's gotta be one open now.

SPEAKER_01 19:44

This is a Sunday break while the iron is hot.

SPEAKER_02 19:48

Yes, exactly. Uh, you know, and again, uh we we all three of us have learned not to predict the future. But I will say, if anyone is listening and they're hopeless, there's hope. There's hope, but it's small, small steps, and sometimes a carrot, and sometimes a stick. So I will say, and the other thing I want to mention that's in the news is um it was about six weeks ago, but there was a, I will say it, a Fox News commentator who said, Oh, homeless people, we should just maybe should just do lethal injection. Did you hear about that? Yes, I agree. And so if you're curious about that, I was on a panel. Um, Corey Minor Smith is a journalist who has a show called Mental Wealth, W-E-L-L-T-H. And you can check that out on YouTube. It was a very interesting panel with a lot of people we know from our podcast just talking about how to help the homeless. And um, yeah, so at the moment that's where we are. And I am almost afraid, I don't want to jinx it, but you know what? I've learned I don't jinx good luck. I share good luck because that's how you honor it. So at the moment we're in a good place. I hold my breath every time it's time for another injection, but so far, so good. And so that brings up some things that are that are in the news. Um, snap benefits are in the news. Is that affecting either one of your sons?

SPEAKER_00 21:22

Yeah, Nick, definitely. They he didn't have his money for a few weeks there. Uh, it actually showed up the other day, the money. But um, and I don't know why, because it showed up before these last changes. Maybe Washington State was able to do something. But yeah, and I mean, and so okay, when this happens to him, thank God we're in a position where we can pick up the slack. But there's so many people who everything hinges on this.

SPEAKER_01 21:53

Yes, yes. I mentioned Jim's in a building of 40 people, and I'd be willing to bet they all. At SNAP along with other benefits. And we too could pick up the slack for Jim. But Minnesota actually, when the money wasn't coming through, ponied up for the money. And then we got told by the Department of Agriculture that no, you can't do that. You have to get the money back. And so there's just a lot of things going on. But it sounds like with the shutdown ending soon and the vote in the House tomorrow and the Senate's already voted that we're back on track until the end of January, where who knows we'll be back where we are again right now. I wanted to go back to um Randy's mentioning what's going on in California with the, what was it, relentless outreach? Relentless outreach. Relentless outreach. I do too. We've tried um tried something similar to that in Minnesota. A law was passed just a couple of years ago called voluntary engagement. And that is uh considered the very same thing. Outreach workers are to proactively go and try to convince people relentlessly to uh to come in and and get help. And the goal is to avoid civil commitments or even AOT and instead um keep people in the healthcare system, not the criminal justice system. The sad ending to that story, though, is uh because the counties considered it an unfunded mandate, and Minnesota is in the minority of states where the mental health system is uh implemented county by county. Most states, it's a statewide situation, but in Minnesota it's county by county. And so it was made an option for counties, whether they wanted to do this or not, and none have uh raised their hands, and that's due to lack of funding. They are their plates are full, so they are dealing with people in the courts, and they are dealing with people that are in the hospitals, and they're dealing with people that are already uh ruining their lives with untreated mental illness and that sort of thing. So they are not willing to have any of the money go into that preventative type measure, and um that's a problem. But funding is important, but I think prevention and trying to keep people stable with my favorite topic, uh, clubhouses where people stay out of the revolving door, those kind of things get lower funding priorities than the the immediate things, but that keep happening over and over again. You can't break the cycle if you don't do something different. And we need a big dose of doing something different in our mental health system.

SPEAKER_02 24:52

Yes, and we have many, many episodes about that. So I think we'll keep this fairly short. I just it was just like a check-in, but I will, and there's many things in the news, and there are many people like our sons who you may say, hey, you know, why don't you just get a job? And you know, when you have schizophrenia or you have other conditions or other disabilities, not everyone is able to work. Not everyone is hired to work, and there are benefits that boil down to people that truly need the help. And so I hope things come together very soon. We need to fund to help everybody in this country, and we're we're not pointing a finger at anybody, really, are we? Um But what I would like to what I would like each of you to say is, and this is off the cuff, but uh what would you say to somebody just starting out on this journey now? We get a lot of fan mail from people like, but I don't know what to do. Oh, this just happened. Um I'm we're in crisis. Uh, you know, I'm trying to I we even get fan mail from people who are trying to help their brothers and sisters with their kids. And I we've been on a long road, but what would you say to somebody just starting out? What's what advice do you wish you had heard and known 20 years ago when this began for you?

SPEAKER_01 26:34

Well, I could start because I am because of our podcast, because of our books, and because of our visibility in our areas, we all get lots of people that contact us and want help. And I'm dealing with four people here in Minnesota this week, one today, and the one I dealt with over the weekend is the one who I was giving that exact advice to, Randy, because she's starting out with her young son, the same age as all of our sons, when they were diagnosed. He's on his first psychotic episode. Um, I had to go at that time to get Jim out of jail in Montana. She, for the last two weeks, is down in South America, he's in another continent. So um, so I was spent an hour and a half answering those questions for her. And I always am careful to say it will get better. You know, it's a long road. It might take a couple of years when you're starting out to get everything smoothed out with the right meds, having him be willing. If he's, of course, using lots of uh cannabis. And um, this mother did not know yet the relationship between cannabis and psychosis and the growing information that if you get psychosis from cannabis, schizophrenia is in the picture. So um she had to learn that. Um, and but I was just giving her the practicalities of how to get him back on the plane. Uh, she's looking for actually a companion, the health company. She actually works for a health insurance company. And so she knows that they provide companions for medical necessity on planes, but it's mainly for people, of course, with physical disabilities. I said, well, you have the inside track, you'd be the first one to get somebody to help your son get back on the plane from uh South America with a companion that the insurance company is um is getting back.

SPEAKER_02 28:39

Yeah, so this boils down to learn all you can, advocate early detection, be the loud voice in the room, um, ask for what you need and get company, like know that there are other families going through this and learn from each other. Is that kind of sum that up?

SPEAKER_01 28:58

That kind of sums it up, and she's already got a fast forward into the hospital when she does get back. So she knows that. But I just feel um drained when I talk to people who are starting out or people who are in the throes of things, just like as if it were Jim and us again, um, because it just takes so much energy and you know what they are facing and the long road ahead. But I try to inject hope every place I can because there is a lot of hope, as we have discussed tonight.

SPEAKER_02 29:32

Yep, and you're not alone. Mimi, what would you add to that?

SPEAKER_00 29:36

Well, you pretty much summed it up, Randy, with your uh quick overview there. But I I do say, you know, I would have always said in the past, definitely education, uh, learn everything that you can. And I have a list of things I'm not gonna say because you're just repeating what everybody said. But I do feel differently about one thing right now. And if people will bear with me and maybe think about this a little, it actually has helped me, and it's that you're not that special, like this isn't that special or unique or out of the blue thing to have happened. It's actually a very ordinary thing, and it's and so to me, the reason why I like that approach to it is that if we that that what follows from that is that this is part of life, and lots of people have problems, and some people have physical problems, and some people have mental problems, and some people you know have economic problems. There's something, and and it it's not that special. We all just have to deal with it, and I think that that dovetails into incorporating and accepting these people into our culture, our society, which is to me one of the biggest issues, is that people with serious mental illness are just basically told by the culture that we don't have a place for them. And and so I think if we stop regarding this as this unbelievable thing that happened, of course, it feels that way to us when it happens, especially in the beginning. But again, I've kind of stolen this from a different podcaster that I heard at one point talking about grief, and the thing, and he had gone through a very traumatic thing and was in deep, deep grief. And this thing about it is it's just ordinary. It's ordinary. We all have to deal with grief. We all, and and I mean, so I think by calling it ordinary, by not making it special, by not and just saying this is part of the fabric of life. We can let go of a lot of things that we hold on to that keeps us from just going on with our lives and having a life. I mean, having a daughter with who has other kids like you do, um, Randy or Mindy, you know, your work and your daughter and her and me too. It's like this is just a part of it. And and if we can keep, and I think that that's better advice than saying self-care. You know, I don't think a bubble bath is gonna do it, but I do think a bonk on the head with a frying pan that just isn't, you know, this is just part of it. Get on with the business of living might make it a little bit easier for some people.

SPEAKER_02 32:43

So that's an idea that I guess they say, you know, everybody's got something, and but there's also that there's processing time when the rug is pulled out from under you. I would say that um find other people so you know you're not alone would be my my top. That's that's what helped me so much to know that I wasn't the only. I felt like I was the only one going through it. My son was the only one going through it, and you know, and we put one foot in front of the other and small steps. And so we are here for you. There's many, many episodes for you to look back on, and you know, just read the titles, it tells you what the episode is about, and you know, find the episodes that give you the information that you need or give you the comfort that you need. We have episodes where listeners are telling their stories. We have episodes where listeners are asking questions. Stay in touch with us on the Facebook page and you can post some questions there. We're gonna try to be here for you in season six. And we are Schizophrenia Three Moms in the Trenches, and we'll see you next week when we talk about ECT. Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts and or on YouTube. And remember, you can reach us at mindygryling.com, randyk.com, or Miriamfeldman.com.