Ask the Moms: We Answer Listener Questions in Our First Live Episode! (Ep.40)

We invited listeners to come on board for this episode, for some Q and A, and wow did they come through!

This is one of our most powerful shows ever, thanks to you. Yes, if you want, we will do this again.

We discuss:
how we wrote our books
How to help the Treatment team include us - even if they are reluctant (HIPAA, confidentiality, etc.)
Planning for when we are no longer able to help
The value of our anger, the value of our love
Lack of training for many practitioners re SMI (serious mental illness)
Conservatorship/Guardianship
SSI/SSDI
Positive life lessons for us in all this...
and much more.

Want us to cover a topic? Facebook page @Schizophrenia3Moms
Twitter @SZ3MomsTrenches

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

Hi, this is Randy Kay, and you're about to hear episode 40 of Schizophrenia Three Moms in the Trenches. This was our first live show. We invited people to join us and spent an hour just answering questions from our listeners. Thanks so much. I think you'll find this a really powerful hour. 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 Kaye. And welcome to episode 40 of Schizophrenia, Three Moms in the Trenches. This is our very first live, well, recorded live, just like the late show and Stephen Colbert. We're recording. We're not live now, but you are live with us, and we're so delighted that you're here. We haven't had a chance to meet each other, really, or any of you except on Facebook. And we're just so thrilled you're here. And this is, we have nothing planned except to answer your questions, but we do have a few ground rules to start with. So you've already done the first thing, which is everybody please mute yourself unless we call on you. Should be at the bottom of your screen a place for you to raise your hand if you want to ask us a question. Alternately, as you can see by the glare on my glasses, I am keeping the chat room open. I can see it. And if you want to ask a question, you can say, Randy, please call on me. Or you can just type your question into the chat room and we are going to do our best to answer your questions. That's why we're here. We've gotten a bunch of them and we've done our best. So please mute yourself unless we call on you. Much as we love your babies and your dogs, it gets difficult. You can raise your hand if you want to speak or post in the chat. Please make sure in your chat, you're probably totally know Zoom by now, but on the bottom in the chat, just make sure that the chat says to everyone. Otherwise, it's going to be a private message to somebody, which I guess you're welcome to do as well. But if you're going to write to everyone, we're going to ask that it please be a question. So, because if you want to chat to each other, then I won't be able to determine where the questions are. I didn't set this up as a webinar. I did it as, you know, just as a meeting. So you can type in there. But I'll tell you what we can do right now, just to start. If you want to go into the chat room and everybody make sure it's set to everyone. And if you would type in one word, don't hit send yet. Just type in one word that describes what it feels like to have someone in your family have a serious mental illness. Just type one word, don't hit send. I'm going to tell you when to hit send. Okay, now um everybody hit send all at once. Go. So can you see the chat room? So, Mimi, it's hard to hear you. So I'll read the trapped, challenged, frustrating, sad, devastating, nerve-wracking, sad, tired, chaos, sourful, challenging, disheartening, devastating, and exhausted. And boy, do we feel you. I know you know our podcast or you wouldn't be here. So thank you. I hope that we can do our best to answer your questions. A couple of disclaimers. And one of it is that first of all, we're going to ask that your questions be questions. This isn't an online support group. We can't run that right now. Maybe we'll do that at another time. But we know that you have questions for us. Some of you already posted them on Facebook. So much as we love you and want to hear your story, this isn't the forum to share our stories necessarily, except as a brief introduction to the question. Is everybody okay with that? I see nodding heads and nobody complaining. So the other thing is we this is not an advice column in that we can't really prescribe anything. We can't comment that much. Although if you've listened, you know that we do comment a bit on medication and treatment. But all we can say is what's been working for us. We don't know your case. We're not doctors, and legally we can't do any of those things. So with that in in mind, I just want to share a couple of things. I want to thank you because we hit over 30,000 downloads, and that's very, very exciting. And you are with us for episode 40, which is really exciting. And I wanted to let you know that our Facebook page, you're probably aware of it. But if you can let other people be aware of the podcast on our Facebook page, we've got 1,044 followers, and we figure we don't solicit, just we figure anyone who's there needs to be there. So we're glad. And if you're on Twitter, I don't talk about this a lot, but we're there. And it's at it's Schizophrenia Three Mom's Trenches, but the at the Twitter handle is SZ for Schizophrenia, the numeral three mom's trenches. In fact, I'll just put it in the track. So it Twitter is at SZ3 Mom's Trenches. And we got about 8,000 followers over there. So look, mom's trenches. Okay, well, that works. Um, coming up next week, we will be speaking to uh Carrie Morrison. And Mindy, do you want to say a bit about who Carrie is? Actually, uh Randy, it's Mimi that invited Carrie. Mimi, are you? Can we hear you? Let's try it and let's can you hear me? Yeah. Can you hear me?

SPEAKER_04 6:02

Is it working? Okay. Um, she was my next uh across the street neighbor for many, many, many years. We knew each other to wave to, but she did not know Nick was sick. And uh after we moved away, she became a ferocious mental health advocate. And we remet through a um a friend that we both have, and now we're working together on things, and she is doing a lot to create housing in Los Angeles for homeless people, and she also works very closely with this city in Italy called Trieste, which has a very unique approach towards dealing with people. It's SMI and it's fascinating. So she'll tell us all about that.

SPEAKER_00 6:51

Awesome. Thank you so much. And then coming up, uh another, I think the week after that, we're gonna be speaking. A lot of people have asked us to speak about what happens if you grow up with parents who have schizophrenia or serious mental illness. So we're gonna have two guests. One is a woman named Christina, she's from Canada, and she'll be joining us. And then uh a woman named Karen Kamba has just written a new book called The Snipers We Couldn't See about being raised by her mother with schizophrenia. And um, she asked to be on the show. So we thought that would be a good show. So we get some good stuff coming up, and that is all I want to tell you. I want to get started. Now we do have, we do have um, I'm sorry, I'm distracted by my phone. What is going on here? Messenger audio. I don't know what that means, and I don't know whether it because it says schizophrenia, three moms in the trenches, messenger audio. I'm gonna leave it because you guys are here and this is fine. So we do have some questions that came in on Facebook, but you guys are here, so I want to start with you. So if you have a question, please go ahead and type it in the chat room or just raise your hand. There should be a little thing along the bottom, and we'll call on you and we're here for you.

SPEAKER_04 8:09

If you're feeling you have to have questions.

SPEAKER_00 8:14

Okay, I'm gonna start with one that was on Facebook, or if we can see you, you can literally just do this. Actually, Leah has her hand up. Leah? Yes. Oh, you know, I don't think I can see everybody. That's why. Where's Leah? Okay, Leah, can you unmute yourself?

SPEAKER_02 8:32

Yeah, can you hear me?

SPEAKER_00 8:33

Yep. Yes.

SPEAKER_02 8:35

Hi. Hi, everybody. Um, I am I'm Leah Brennan, and I'm actually here. My my question has to do with um, I'm a mental health provider. And um I had the privilege of speaking with um with Mindy of maybe a month ago. Um, I got connected to your podcast through um somebody in my in my on my caseload. And I just so I started I've been listening to the podcast for maybe three or four months, and I'm just so struck by your generosity of of wisdom and time. And um, as I said to to Mindy when we spoke, I just I feel very inspired to match your efforts in some way, shape, or form. Um, but because I don't have this lived experience, I just have the clinical training in I'm a I'm a marriage and family therapist and a substance use addictions counselor. And so my question is, what could someone like me do to be better educated and prepared to help families? And then how do I, what would you want me to be sharing with other mental health providers around this topic?

SPEAKER_00 9:35

Wow, that's a fantastic question. And I think you asked it on Facebook as well. Was that you?

SPEAKER_02 9:41

Nope, I'm on that, I'm not on Facebook anymore.

SPEAKER_00 9:43

You know, you have a um a kindred spirit who also wrote a similar question saying I am a practitioner and I see if I can find it, basically saying, why didn't they train me in serious mental illness? And we wonder the same thing. So um, Mindy, do you want to take a stab at this to start? And I'm gonna mute while you're talking.

SPEAKER_03 10:10

So okay. Thank you, Leah, for that question. And I did enjoy talking with you earlier. So I'm gonna take the second question, and maybe Mimi or Randy wants to take the first part of your question, but you were wondering um how you could talk to what you could tell other providers. And um, that one is just a big uh cause of mine. So that's why I took that one. And I would say all providers should get as educated as they possibly can on HIPAA, because I think there's a lot of misunderstanding. And everyone on this meeting here knows that mental illness is a family affair, you know, it affects everyone in the family. And the person who is most ill is often, um, if they're really not doing well, they could be paranoid or suspicious of their family. And also the whole mental health system often um pushes the family away. And I always call people that are exuberant about HIPAA, that they're kind of like um HIPAA zealots because they don't understand it and they don't even talk to families as much as they could. And so you're a psychologist, so that makes it a little harder. I'm talking about also psychiatrists and other doctors, I think it's even harder for psychologists to not um to share and talk to families. But I think if um people like my son, if he's encouraged by mental health providers to include his family, then he does. And if the uh mental health providers are like, well, you know, we'd like to be able to talk to your doctor, your social worker, your this, you're that, is that okay? Is that okay? And then he says, yes, yes, yes. And then they get around to the family and they say, and do you want your family to know about this? You know, they kind of take it in a different tone and make it sound like, no, I don't think I do want my family involved, you know, because people are suggestible. So to me, that is the one thing that I think providers should know to do better. And there's no provider in the world that can take care of people like my son, like I can and like my husband can. And they don't have time. They've got all these caseloads and they aren't around at night and on the weekend, and that's when things get exciting sometimes. Well, that's my I'm gonna contain myself to that one thing because I'm sure Randy and Mimi have other things as well.

SPEAKER_00 12:46

Yeah, so definitely I would say that really knowing what HIPAA is for, what it was designed to do, and what it was not designed to do, it was not designed to shut families out. So, uh, but often for safety and not getting sued, very often practitioners don't aren't, they're mistrained by their superiors as to what it is. So there are ways to include the family by really understanding what HIPAA is for. So that's the, and I will I will say that I we're going to do an episode on how come serious mental illness is not a requirement in the curriculum for people who are studying school psychology, guidance counseling, therapy, and uh and well, psychiatrists, I'm assuming they study it because I know people who had their masters in school psychology and it was an elective. And if I if when my son were in was in high school, if any of his well-meaning counselors had understood that this was prodromal symptoms of schizophrenia, I might not have liked to hear it, but it might have helped me to get him treatment sooner. And I think they just didn't know. They see it as behavioral. So I would say that in the in the higher-ups, please include it in the curriculums. If you're studying, take that elective and just overall know that by the time you meet the family, if we seem a little bit crazy, it's because we've been through the ringer. And we have tried every single darn thing we can to make this a normal problem and uh, you know, fix, fix it ourselves. So by the time you meet us, we are a little bit nuts, but that doesn't mean it's our fault. Um, Mimi, anything to add to that? We're not all gonna answer every question, but I think it's a really important one. So I'm gonna mute and let you answer that. And then there's one in the chat that we're gonna get to, and then we'll take another raised hand.

SPEAKER_04 14:56

I would say uh, you know, pretty much what you said, and um just to invite the parents and family and be creative in creating ways to receive and give information if you're worried about the structure of HIPAA, but also if you look at the history of the HIPAA, nobody's ever been prosecuted for it. You know, it's it's a thing that exists to protect people. But if you get a doctor who um who really wants to adhere firmly to it, find other ways to get around it. I used to go sit in front of the doctor and I would say, you know, um, I know you can't talk to me, so I don't expect you to give me this information, but if you don't say anything, I'm gonna assume the answer is yes. And then I'll ask the question I needed to know about my son. And by and large, the doctors play along and help you. And so I would suggest to somebody speaking to other providers to tell them that idea because there are ways around it, and we need to help these kids, and we've gotta we can't wait for um laws to change, we've got to make it happen.

SPEAKER_00 16:10

And as you well know, Mindy spent 20 years of her life changing laws with some success, but it does take a long time. I'm gonna take a question, and thank you so much for that, Leah. That's a great question. And if you've just joined us, welcome. We've got about 20 people with us, so we're delighted to meet you. Uh, there's a question from Delaney in the chat room, and the question is: can you speak to the difficulties for your sons applying for receiving and maintaining SSI benefits? Can I start with that one? Um yes. Uh, and and by the way, I also am a NAMI family-to-family teacher, and I teach about once every 12 to 18 months, if I can find the time. So I'm about to start that, and this comes up a lot there. I've had some of my family members tell me I had to quit my job in order to apply to Social Security. It's a lot of paperwork. Um, the first thing I would say is that if if your loved one, if you feel they need social security disability to function and they don't agree with you, that was the case with me. See, if you can get conservatorship and apply on their behalf, one of the first things that I did and I was advised to when my son was over 18 and was in the hospital finally was to apply for conservatorship in the town where his hospital was. And we all live in different states. I'm in Connecticut, it's called conservatorship here. This is how we do it here. But I was told that if I applied, then they had to keep him in the hospital until the hearing. So that bought me time to begin with. And that first hospital stay, and he was refusing medication, was 35 days. And I did get conservatorship. And with that, I was able to go ahead and apply for Social Security for him. The second thing I would say, so number one is get conservatorship if you can. If your child is not 18 yet, then um, you know, talk to a lawyer or a specialist in your state about how to do that. The second thing I would say for me is that um keep as many records as you can. You want every date they went in the hospital, every med they were on. If they got fired from a job, get the name of the manager that fired them because they couldn't manage to show up on time or whatever it was. The year that I applied, my son gained and lost seven jobs because each one was like, oh, this is the perfect job for me. And then grandiose delusions would come in and they were all against him, and he would end up quitting. So gather as much evidence as you can. And this isn't just for SSI, it's for everything. Uh then keep at it. And they are backlogged like crazy with the paperwork. It took a long time to get SSI for my son. And then when he had this period where he was working, he lost it. And then with COVID, he went back in the hospital and I had to reapply. And they told me they would fast track it, and therefore it would only take 18 months. So that's fast tracking. So social security is far behind. Keep at it, keep calling. If you get somebody who doesn't know what they're doing on the phone, which you will call again and get somebody else. Those are the things I would say.

SPEAKER_03 19:43

Um so and I would add, so every state is different, as Randy said. And so getting a conservatorship, applying on behalf of your loved one, that would not work in Minnesota. So make sure you check out the laws in your own state because they're all different, unfortunately. Um, but for me in Minnesota, the only way to really get Social Security is to get an attorney. And the way that the law works here is the attorney or the way the attorneys operate here is they do the work, and then after your son or daughter or whoever gets SSI or SSDI, then they take the first three months of that person's payments for their payment. So that's fine. That's a really good thing. So you as a family don't have to pay a thing, your family member doesn't have to pay anything. And right now they don't have SSDI, so so they have to wait three more months to get it. So there's no cash outlay, the attorney gets paid, and it's really good. The one thing I will tell you that was the hardest for me when Jim was looking to get Social Security. And by the time he was looking to get it, he was in his late 20s. He'd already been sick for since he was 21. So we didn't, I don't think he would have agreed to it at the beginning. But this by now he's agreeing to it. And I'm the one that's balking. The attorney turned to me and she said, um, they're going to ask Jim, and if you're in the courtroom, they're going to ask you, will Jim ever be able to work again? And I'm like, well, he's working right now, and he's probably he's gonna uh I think he can work even more. And she said, okay, goodbye. You're not coming. You can't come to the courtroom because then he's not gonna get SSDI. Um you have to prove that you're impaired in your future working capabilities, or you can't get it. So you have to be prepared to fulfill that requirement. And that's that was hard for me. So I didn't go, and Jim got it. And some people have to apply and apply and apply. But we had an attorney who was um incredible. She had a reputation. The judges kind of laid down as soon as she showed up and gave it to that person. So it's important to look into who the attorney is and then make sure that you're prepared to lie about your thoughts about your loved one's future uh ability to work.

SPEAKER_00 22:25

Yep. And I would add that my cousin in Colorado is a um a lawyer who specializes in an SSI SSDI, and we're going to have her on the show. So we'll talk about this at greater length. But I would say definitely keep as many records as you can, gather all your evidence, appeal if you get no for an answer. And when and if your loved one is able to work, as my son was, you have to navigate that delicately, delicately and find um some counsel to help you do that. Few things in the chat room. Is conservatorship the same as guardianship in some states? Yes. We did an episode on that. Um so in in Connecticut's it, you can be conservator of the person or conservator of the, Mimi, I see your hands. I'm going to call on you in a second. Conservator of the person or conservator of the money, uh at the estate, they call it. And so I guess conservator of the person is what other people call guardianship. 50 states, 50 different rules. Um, Mary Joe says, Hippa, I usually ask them at the nurses station to have my son signed an authorization for release of information. Uh, you know, we can all see the chat, but if you're listening to the podcast, you can't. So I want to uh get this out there. I also remind them they can listen to me even if they cannot tell me anything. That's absolutely true. Paula wants to know what kind of attorney should one look for. I uh some someone that deals with estates and guardianship, and I don't know, but uh Mimi, I'm gonna you have your hand up.

SPEAKER_03 24:02

Is that your before we get to Mimi? I'm gonna say about that attorney, call Nami, because they usually have a list of attorneys that are good at certain things.

SPEAKER_04 24:12

Okay, I just want to reinforce what Randy said about keeping records. I suggest to everybody firmly get a notebook and keep a record of everything. And it's not just in regards to SSI and that stuff, but in regards to the actual trajectory of your loved ones' treatment. You know, you think you're going to remember things, but you don't. And it becomes very important to have this history as the years go by, which they will. So I just can't stress enough how important that is to just write down even what happens every day because it gives you a good overview of their illness as well. And the other thing I wanted to say, which I'll take on myself because not everybody wants to give this advice, but it's like lie if you have to lie, forge your son's signature if you have to forge your son's signature. I've done all these things and I'm not ashamed of them. We're, you know, we're in a war, we're in the trenches, as we say. And you got to save your loved one's life. And if there are restrictions and blocks in the way of doing that, I personally feel no guilt or no uh palms about doing what I need to do to get my son help. It's life or death, it's more important. And if you tippy toe around all these restrictions and people who tell you that you can't do this and you can't do that, meanwhile, your loved one is just going to be getting sick. So that's my personal advice.

SPEAKER_00 25:44

Awesome. Thank you. Uh, I see Jen has her hand up. Jen, can you unmute and start talking?

SPEAKER_01 25:50

Um, I wanted to add to the documentation piece one thing that I have done over the years. Matt's been, he was diagnosed 28 years ago, so we've been on this journey for a long time. Every uh psychiatrist he's been to, every time he's been hospitalized, I have requested all the records. So pretty much we've got like, I mean, filing cabinets full, but it it is memory trauma. It's trauma for us. Where are we gonna remember all those details? No. Um, a lot of the facilities we found really are hesitant. I'm my son's guardian, so I can request those, but even so, they're hesitant to give them out. Um, but we have a right to them. Matt has a right to his records, and I, as his guardian, do too. So I was just gonna throw that out there because I found it to be very helpful.

SPEAKER_00 26:36

Awesome. Thank you so much. So I'm gonna take a question that that was on the Facebook page and welcome if you've just joined us. We have just um been discussing SSI and SSDI and HIPAA. And uh right now, um, I'm gonna take a different kind of question because it was the first one that came in in the chat. So uh this comes from Sheila, and I don't know if Sheila's here, but she says, your books are incredible. I'd be interested to learn how each one of you wrote your book. Um, and she says, I've always said I could write a book because if I could help one person in the process, then our struggle will have been worth it. Thank you, Mimi, Randy, and Mindy for your books and your podcast. So Sheila wants to know how we wrote our books. Um who wants to start? Well, maybe we have to make this brief because it could be a long saga.

SPEAKER_03 27:26

Yeah, I just had a two-hour coffee with someone this morning who wanted to write a book and we discussed this. So not two hours, but I will just say I uh took a classes at a literary center. The first thing they said is just write and write and write and write. And don't worry about editing or what you're saying or any order. And then you've got this block of sculpture. And then after you think you're done, you've exhausted yourself, then you carve out your beautiful statue in the center. And I used um two editors, I used six or seven beta readers. I my first reader was my son. If you're gonna write about your family member, then you I believe you must include them as you're writing it if they're at all able to. And Jim was very sick at times, but he was very interested. And I would not have felt the same talking about my book if I hadn't gotten his his buy-in.

SPEAKER_00 28:22

Mimi, you want to take this?

SPEAKER_04 28:26

Yeah, I mean, the you know, we could talk for an hour each about this, but I I think that what Mindy said was pretty much what I did as well. And uh none of the three of us are writers by profession. I'm a painter, so I mean it's nothing like, but in a way it is. And so what I did is I just kind of applied my um modus operandi for making art to this, and so it was words instead of paint, and um it worked. And what Mindy said was really the thing, you just spill it all out and then start honing it away. But um, it's arduous, it's painful, and going from the point of getting it finished to getting it published is a whole other arduous, painful journey. So if you want to do this, it's something you gotta be ready. It's the most work I've ever done in my life, and I've supported myself as an artist for the last 50 years. So it's just not like I'm not used to folly. But I I did it and I stuck with it, and um, I'm really proud and really satisfied that I did it and got it out there.

SPEAKER_00 29:38

Thank you. So if if you're listening and you and you're oh, let me just let another guest in. So welcome if you've just joined us. The question on the floor is um, how did you write your books? And Mindy, who wrote Fix What You Can, has answered, and Mimi, who wrote He Came In with It. And both of those came out last year, actually a year and a half ago, because you were all set to go on book tours. And then guess what came along in 2020? So everything became virtual. My book is Ben Behind His Voices, and I did mine 10 years ago, and um very similar process. And I will agree, if you're interested in writing a book, it will suck the life out of you. It will also and take up a lot of your time. But if you feel that your story will help other people, that will keep you going. I also began because I know myself and it'll stay as a gee, someday I'll write a book unless I have accountability. So I signed up for a writer's class because I knew I'd have to deliver a chapter a week. And once I got about 10 chapters written, I almost stopped because the next class was much more expensive. And I said, I don't know. And and then of course she gave me the perfect salesman's answer, but she's still a friend of mine. So she said, I wonder if you've considered the cost of not writing your book. Like, what would it mean to the world if you didn't write your book? So I said, okay, sold. And so I continued with another class. And by then I was more than halfway done. And uh then I kept going. And it went through three titles. The first one was To Helen Halfway Back. The second title was No Casseroles for Schizophrenia. It took longer to get it published than it took to write it. And I did have a traditional publisher. Um, yeah, and so it's a process. It is not cathartic, not for me, but it was the biggest research, it was like the biggest term paper I ever wrote because I had to figure out what happened when and five hospitalizations and which doctor was that. And there was a lot of research. And luckily, I had a lot of, I had taped a lot of my conversations with my son, thinking someday he would listen and realize he was sick. That has not happened. But that was the conversations in my book are conversations that actually happen straight off the tape. So, you know, all the evidence that you're going to be keeping can help you tell your story. But I would say the best piece of advice would be to make sure that your book is different enough from the other books that are out there to make a difference. So that's um that's the answer to that question. Now we have one in the chat room that is from from Linda. Wondering, Linda Sachs, and Linda, you're welcome to unmute and ask the question yourself. But since I put it in the chat, I'm assuming that's what you want. So wondering if you could speak to choosing a trustee for a supplemental needs trust. Do you have an opinion about an all-inclusive law firm that specializes in this area with social workers and advocates on the board as well as lawyers? I worry, don't we all, about not only trust administration, but also interfacing with landlords and housing and authority, et cetera. This goes along with a question we had on Facebook from Julie that said, I'm getting older and more disabled myself, constant worry and anxiety the whole time. Anyone have ideas? You know, so we're we're all gonna die one day, and what's gonna happen to our kids if we're dealing with our children? So, how do you choose help? That's a really good question. I will say at a short answer, so I'll go first. Um, in Connecticut, I I somebody came to speak at our NAMI group and it was called Plan, Planned Lifetime Assistance Network. And a lot of people in Connecticut who have children with Down syndrome use them. And it is no membership fee, but you kind of uh let them know and put them in your will that when you die, that you know, obviously whoever's alive that can take care of your loved one. But if the worst should happen, I did not want my daughter to be in charge of my son's money. I did not want that in the way of whatever's left of their relationship. And, you know, knockwood, they're doing very well and they love each other. I did not want her to be in charge of doling out his money. I wanted her to love him. And so I signed up for Planned Lifetime Assistance Network, P-L-A-N of Connecticut, Plan of Connecticut, that may be something similar in your in your state. You'd have to ask an attorney to if there's anything like that. But what they will do is the part of my estate that would have gone into uh trust in a bank for him or straight to him, his inheritance basically will go into this trust. And I have filled out a form, everything from does he get a birthday cake on his birthday to how much should we let go? You know, I mean, it's it's very detailed and very painful to write. I've also pre-planned and paid for my son's funeral, so that was fun. But um, for me, that seems the best. Other families may have a different um, and I my son-in-law is a lawyer, so that helped me to find, you know, he helped me find find a lawyer that um that specializes in these areas, I think definitely. So that's my answer.

SPEAKER_03 35:18

I got an attorney by going to a workshop at Nami, Minnesota. They had an attorney there who gave a workshop on supplemental need trusts, and so we hired him. He was a father. The best attorneys are those who have somebody themselves, and so they take a personal interest in this area of law. So he had a child who needed a special needs trust, and so he was really good, and he did a very incredible job. Um, and then we I uh unlike Randy, our daughter is the trustee for Jim. And I looked at our daughter, they don't live in the same state. She's in Washington, D.C. Jim is here in Minnesota, and um, I'm a very aggressive, um, detail-oriented, conscientious person. And my daughter puts me to shame. And so I couldn't think of anyone who would be better. And Angela and Jim, she's the older sister, they have that relationship already where he's the younger brother, she's the older sister. And I also told this to Jim. And I'm in a, you know, Mimi and I both said earlier, we're not adverse to lying if we need to, and I'm not adverse uh to manipulating if I need to. So so I and I, in this case, it was with the truth. I told Jim, if Angela's your trustee, she will do it for free. And if you have anybody else, then they're gonna take a cut of your a big cut of your um of your money every year for just nothing but giving you the money that you already have. So he saw that quite clearly, even though he wasn't uh thinking totally clearly at the time. And so he agreed, and she's his trustee. I do give her an out, and this is something that the attorney who had his own child who was working with Nami recommended. And so if you do have a family member do it, I would definitely put in this out. And that is if the family member who's the trustee needs to bail, they need to be able to bail. So if somehow Jim, right now Jim is doing really well, I have to say. They would have no trouble having her be the trustee, but he can't inherit money or he would lose his SSDI. So that's the reason we have one right now. But if he somehow went off his closopene and started using drugs again, then she would need to bail. And this is how we set it up. The bail is NAMI. As I said earlier, NAMI has a list of attorneys for almost anything you want. If you get into criminal court, we call NAMI. Okay, Jim is in felony court, now what? And they give us an attorney or a list of names and supplemental needs trust, try these. If you bail on your uh trust, if the Angela can't deal with Jim, then NAMI will help her to find someone else. That's how we set it up.

SPEAKER_00 38:14

And I will add uh a little plug for Nami. And I know that NAMI has for me some political things I don't agree with, and they're not perfect. But I have had people say, oh, I tried NAMI and it didn't work. Well, sometimes the support groups don't work. Sometimes the support groups who like family to family are run by volunteers. Sometimes they're not great and they're not gonna solve your problems and they're not gonna fix your kid. But there's more to know, but some support groups are amazing. So you got to find your group. If you're not a support group kind of person, which is which is fine, um, know that NAMI has these resources and use them. They do political advocacy, you can tell your story to the legislature. They have an educational arm, which is where I'm most active in teaching family to family. And from me, I have learned that what families need is I call it search. We need support, obviously, E for education, A for acceptance, R for resilience, also respect from providers, you know, C for communication skills and H for humor and hope. This is a tall order. This is what we need. And NAMI does provide a lot of that. So just because the support group didn't work for you, doesn't mean NAMI isn't there for you as a resource. For $35 a year to be a member, whatever it is, and if you can't afford that, there's you can come for nothing. Uh, know that a lot of these resources, you know, I see a lot in the chat about finding a lawyer and finding help. Let them help you, at least in a practical way, if if you're not feeling it emotionally. Um, Sheila says, I appreciate that Leah talked about becoming more educated as a provider. I do too. So the question is, how do you get? I don't like questions that how do you get, because I don't know if we can, but we do have some tricks that we use to get a to help a provider work with you instead of pushing you away. We talked with this a bit about HIPAA. Um, you know, and then um my son's provider don't agree about his diagnosis. She won't explain her reason, she doesn't ask me about mine. And we all had this, they see them 15 minutes and we see them 30 years. So I will, you know, again, we we said at the beginning, we're not setting this up as a support group, but we do want to try to answer your questions. And any of you in the chat who have like a one-sentence answer, feel free to put it in the chat and I'll share it verbally. But I will say that one of the things we we've already heard is they they maybe they don't feel they can tell you stuff, but they can listen to you and insist on being listened to. Make a separate appointment if you can to talk to them alone so that you can share your observations. That would be one tip. And if they're not willing to do it, find another provider. That would be one tip. Who else has a tip either in the chat or Mindy and you're unmuted? So I'm assuming.

SPEAKER_03 41:24

One thing I always do is um people talk about getting all the records or keeping notes and so forth. I I don't get all the records. I gave that up uh because Jim's been around in this game for well over 20 years, but I um but and he doesn't want them. But what I do do is keep the notes, the notebooks. I have notebooks from the day that Jim got sick. So when the doctors or any new provider starts taking care of Jim, I have a running one-page sheet that I give to them. So each time he sees a new provider, I update it. And it, of course, the beginning has to be shortened so that I can get in the new stuff or how he's currently doing. But that one page, and then I always give it to all the current providers, so they have an updated form as well. So then that I they put that, they've told me, often in the front of the folder. So even though they don't want to always talk to me, they have that one-page sheet that they can't resist reading because it's so succinct. They they really don't have time or like to hear from families if you know you bend their ear off and want to talk for an hour, you know, they're not getting paid for that, they don't have time for that, they have too many appointments. So being succinct, I think, is key to being talked to and being uh listened to, but still we have had like all of us have the providers that don't want to talk to anybody. Jim had a psychiatrist that met with him once every three months for like three minutes. And when I tried to communicate with her, she didn't take email, she didn't take phone calls. I had to write a letter and put it in the mail, and then she never responded. So we have we don't have her anymore. But it took me, Jim had her for three or four years because he wasn't doing well, he was high all the time, he wouldn't agree, he didn't. I had to be satisfied that he had somebody prescribing meds. But as soon as he got doing better, he didn't like that either, that she didn't spend much time with him. We tried another psychiatrist and he didn't um he said he would have Jim sign a release so uh we could I could talk to him. He never did it for two months, and so we got rid of him. You know, sometimes if you can convince your family member to switch, and it doesn't even have to be for that reason, you could help them come up with some other reason, and often they will switch. Um, so it's it's just a constant irritation. It's if those of you who have read my book, you know that it's one of my biggest bugaboos that has caused the most heartbreak. Because I think when you Have a very sick person, and then the providers won't talk to you, and they take HIPAA to the extreme, that is the meanest thing they could do to you.

SPEAKER_00 44:09

Yeah, and that circles us back. Uh, Mimi is going to talk about this next. I will just say what Barb shared in the in the chat, which is it is important, and we that we circling back to what we talked about earlier in the hour. It's important, if possible, to look for providers who are specifically trained in SMI, preferably network with other families to see who they use. So that's a good tip as well. Thank you, Mimi.

SPEAKER_04 44:34

Well, I would say, you know, in um Sheila's question, she said she won't explain her reasons and she doesn't ask me about mine. And one of the things that I found through 15 years of doing this is sending emails is very effective. And one thing that doctors all are concerned about is um litigation. And when you send a doctor a missive with a subtext of I am giving you this information, and if something horrible happens because you didn't pay attention to it, you are going to have liability, then they tend to pay attention. And I mean, again, I know I sound like the big liar, but I mean, I'm not talking about lying, I'm talking about like getting right down to it and um getting the reaction or getting the attention that you need. Because, like she said there, you know, she spent three hours with him in his life, and I've been dealing with this for 11 years. We all can relate to that. You know, that these doctors see them for 15 minutes here and there, and we're the ones dealing with it day in and day out. If you send them a you know, manuscript, they're not going to read it. But if you send them some sort of short message that's that's very succinct, like Randy was saying, or maybe Mindy was saying, you know, I want to give you this information. I understand that you can't give me information about my son, but I want to give you this information, A, B, C, D, and if this happens, you can't pretend I didn't warn you. And it gets uh it gets tension.

SPEAKER_00 46:17

Very good. I'm going to uh note that first of all, we have about 10 minutes left because I'm gonna honor your time and it's an hour-long podcast. It's been amazing. We do have a couple of questions about medication, which I'm gonna put to the side for a second. I want you to know that I hear them and I see them. Uh, but Lynn threw out a question here, which is um, how has having a loved one with serious mental illness changed your life in good ways? I just thought that was an interesting question. And Indy's looking down and Mimi is muted, so I'll start right now and then yeah, Mimi, you can go right after me because you just I was making a note to myself about the person that wanted the one-page sheet. Okay, yes. Um, if you have a uh actually, um I'm assuming all of you are on our Facebook page. So somebody asked in the chat, could you obviously not the details, but what specifically goes on your sheet? We could we could post that in the show notes actually of this of this episode. That would be good. Or we could put it on the Facebook page as well if you wish. If it, you know, it's not gonna be anything personal, but um okay, Mimi, you were gonna answer the question about anything good, or you've muted and disappeared. There you are.

SPEAKER_04 47:41

Yeah, I've got answers. You know, um, I was propelled into major life change by all of this, meaning how I look at the world, how I dealt with being alive, how I dealt with all of this. And yes, this is the worst thing that ever could have happened. And if I could, I'd peel the skin off of my body to make Nick not have schizophrenia. But this arrival of schizophrenia into our lives did not come without its gifts. I am so much better of a person than I used to be. And I don't mean I'm proud of myself, I mean I'm a deeper, more understanding, more patient, more appreciative human being than I ever was. Our family is stronger and more devoted and more committed than it ever was. Apropos of the questions that we were that were being discussed before about what happens after we die. You know, we have a special needs trust set up for Nick for tax purposes, but I have no instructions as to what to do because I know that my three daughters will handle it and I don't need to tell them what to do. And what a gift, you know. I I mean, I've been thinking after what Mindy said about giving them a way out that maybe I need to do that. But I mean, I am not worried about it, and to have that sort of faith in other members of your family, it's a beautiful thing. And um there's just, you know, at this point in my life, if it's not, if there's not blood or fire, I don't even blink an eye. And that's kind of a powerful way to live where where where everything gets put into perspective and you don't sweat the small stuff. You know, we all talk about not sweating the small stuff, but us here in the trenches, we really don't. You know, I just don't waste my time worrying about anything that isn't important. And it's a real sort of cutting-edge way to live, and I like it and I'm grateful for it. All that being said, I trade it all in for Nick to be healthy, but I don't have control of that, right? And I think that identifying and being grateful for the gifts that this brings is valuable.

SPEAKER_03 50:22

And Mimi gave such a beautiful answer. I'm just going to add one small thing because I agree with everything she said. The one thing I would add is I found out who my true friends are, and I made a lot of new ones.

SPEAKER_00 50:38

Okay, those those are amazing. And I will just add, yes, yes, I agree, I agree. A friend of mine once sent me to a psychic astrologer as a gift, and I'm like, okay, sure, I'll go there. And you know, she wasn't too woo-woo, and she said, I just we want to see what your chart says about your situation. So she knew about my son's illness because I told her. And near the end of the session, she asked me if I had any questions, and I said, you know, I I know that because my son got schizophrenia, I am more patient. I have understood who my true friends are. I appreciate ordinary moments like I never have before, like just the beauty of my son is currently in a good place today. And every Sunday he comes over and I pray that he seems coherent. And if he comes over, my daughter has three little kids and they adore him. And to hear him playing with the babies, that would be joyous anyway. But it's triply joyous because we've almost lost him so many times. And so um, I'm gonna put a plug in. I answered the question about how I stay positive in my new book, Happy Ormade Simple. Choose your words, change your life. And there's a little bit about our story with schizophrenia in here because my go-to phrase is it is what it is. Would I rip my skin off and put it on my son if it would make him well? I would, but I can't. It is what it is. So, what can we do given what we've got? And you know, things like dabbling in mindfulness and dabbling in humor and dabbling in appreciation of other people have helped me a lot. So um, anyway, what the so when I said to the uh astrologist, so but I don't understand why my son had to suffer for me to get the benefit of the journey. And she said, That's not how it works, it's your son's journey, too. And I have never forgotten that. Like, you know, he's a big star in my movie of my life, but his life is his movie, and I'm just a co-star in his life. And someday, at the worst of moments, I tell myself, someday in heaven or in the light, or whatever is after death, his soul is going to meet my soul and is gonna go, I know you loved me the best you could, and you did the best you could. And that is bottom, bottom of the barrel when I'm really having a bad day and we might lose him, or we thought we lost him. I'll say, I will go to my grave knowing I did my best for this child. And all I can do is my best. And so that answers um Marilyn's question a bit. Where do you find the energy to be such wonderful advocates for your sons, but for everyone with SMI? It's because we love our families. We're doing our best with the crap we our kids have been dealt, and it helps me to help other people. That's so that's that.

SPEAKER_03 53:54

It helps me to help other people. And for me anyway, I'm I have the most energy when I am mad. And I think a lot of people do. Um, you know, negative energy drives. So I am, I was a legislator for 20 years, and whenever you have a hearing on a bill that's controversial, the people that don't like it are so much more apt to show up. You know, you have to really prod those positive ones who support your bill to show up. But I had a bill on um uh civil commitment reform early in my years in the legislature when Jim was first sick. If you've read my book, you know it took a while to get it passed. And we always had the negative people. Um, so I think negative energy drives more than positive energy, unfortunately. But for me, then when I'm advocating for Jim, I am really mad lots of times, really mad. And then I have endless energy. I could almost go for eight hours. I get really scared afterwards, but um, that's my um my ace in the hole.

SPEAKER_00 54:55

Anger drives. Awesome. And I know Mimi has a closing thing to say. We are um getting near the end, but I want to acknowledge what Leah said in the chat. Leah is our provider on the line uh regarding a provider who resists family involvement. She loves the one-page idea. She is a family therapist, uh, so she's not a prescriber. Um, so she's reimbursed differently, but she says, I know the family members of my clients are the experts about their loved ones, and I'd be working at a deficit if I didn't glean as much information from them as was available. Leah, put your number in the chat. We all want to call you and have you be our practitioner. Scheduling a separate family session is always a good thing to ask for. So that is awesome. Um, uh a few questions came in about medication. And I think if you've listened to our podcast, you know that right now um Jim and Nick are doing very well on clauseril, and particularly with Dr. Leitman, who is very, very careful to prescribe it in combination with other medications that will help with the weight gain. I know we had some questions come in on Facebook about weight gain. And um, again, we are not doctors. All we can say is what we've learned. My son is currently refusing Clauzol. And to my great surprise, Knockwood is doing great on Haldol, of all things. I am always looking out for the side effects, and they want to take him off the cogentin and have him just have the injection. And I'm terrified, but that's his decision with his doctor. And, you know, so, but medication is not anything we can prescribe. All we can say is what we've shared. If you read our books, you know our sons have taken pretty much everything there is to take.

SPEAKER_03 56:46

And could I add, um, just talking about my experience, um, when Jim, before he got back on clozepine, because he was on it, then had to go off, he got agranulocytosis and then went back on it. But while he wasn't on it, the thing, the next thing that worked the best for him, not as good as cloizapine, but the next was Haldol. Haldol and clozepine are two of the strongest drugs. But as far as the weight gain, I just have to get this in here because so many people gain a lot of weight, 100 pounds or more on clozapine or zyprexa, the two worse for weight gain. And um, Dr. Leitman and now other doctors are starting to do this too, have things to do about that that should be started the minute you get on an antipsychotic. And so even though Jim gained over 100 pounds, this second time he's on clozepine, he started with Dr. Leitman last August. He's lost 70 pounds and he now um has you know 30 to 40 to go, and he's losing weight every week following Dr. Leitman's protocol. So if you have somebody on antipsychotics and they've gained tons of weight, look into um Dr. Robert Lateman's um protocol, and he's written a book as well. But people do not, I used we used to teach and I heard in Nami when I took the classes that you had to choose between your mind or the body, and wasn't it better to have a mind? Well, you don't have to choose, you can have both.

SPEAKER_00 58:16

But there is work to be done, and we have a show coming up about why aren't they doing more research on schizophrenia? I'm gonna turn it over to Mimi and then I will do a just a closing statement because we're at an hour. Mimi, you wanted to say one more thing.

SPEAKER_04 58:30

Yeah, I just wanted to say to the other moms and whoever else is out here. I mean, I relate more to the moms, um, that back on the train of thought of like the good stuff that comes out of this, the connections, the support, the beauty of the acceptance and love that I found with other people in my position has changed the way I look at the whole world. And when this whole thing started, and I know when it starts for everybody, there's shame, and you want to hide it, and you don't want to put it all out there. And I'm a person who, like Mindy says, she gets better and more energy when she's angry. I'm a person who never likes to show weakness, never likes to show a crack in the armor, and I think I can fix everything, and this smash it all of that to hell. And it was the best thing that ever happened to me to just be able to be honest and tell people. And if they don't want to hear about it, that's too bad for them. The way that we are gonna change our culture, which is a culture that has created a system that does not want to look to look at or deal with people with serious mental illness. And so the de facto treatment centers are the streets and the prisons. This is what we're living with. If we're gonna continue this tradition of hiding it and being ashamed of it, it's never gonna change. I talk about it all the time, and I raise my three daughters to talk about it all the time. And I say, you know, hi, this is my son. He has schizophrenia, and then I go from there. Don't be afraid, don't be afraid to be vulnerable, don't be afraid to show your dirty laundry. Everybody's got dirty laundry. It's the person with strength and with backbone who's willing to just throw it out there. You know, hiding it takes so much energy. And once you abandon that endeavor, you have a lot more energy to take care of yourself, your family, your kid who's sick, and all of that. And you're helping change the world because the way that this has to change is by people knowing about it, people seeing us, people seeing our sons and daughters, people seeing serious mental illness, and not giving them the option to look away, because that's how the situation that we have right now was developed by everybody looking away and nobody wanting to see this. And these are our kids. And I'll be damned if I'm gonna be afraid to talk about it.

SPEAKER_00 1:01:14

That was incredibly powerful, and everybody in the chat is agreeing. Um, I will just add a PS to that, which is that in our case, my son does not agree that at least not that I can tell that he has schizophrenia. And so it becomes an issue to speak for him. And so one way I have handled that is to say, you know what, we experience it differently. It's one of my favorite therapy phrases. I experience that differently. When I wrote my book, I was clear that I was telling it from my point of view, and he was welcome to write a book from his point of view, which he's been writing in his notebooks for 20 years, but I'm not worried. Um, I did include his poetry in my book so that I could have an idea where his mind was. But um I totally agree with everything you say, and we also have to find our way to to tell our point of view without throwing our kids under the bus if they feel that that's why my son doesn't appear on the program. Although I think he's coming around a little bit. I hate to say that. Anyway, what I want to say to everybody who joined us, it's 23 of you, and this has been one of my absolute favorite shows to do. And that's I don't know, Mindy and Mimi, if you agree that this has been just so delightful. We're so happy you're here. If you would like us to do it again every six weeks or something, please put that out on our Facebook page. You know that we are we you can always direct message us on Schizophrenia Three Moms in the Trenches page on Facebook. Uh, maybe we'll have different questions next time. And I'm so glad that you know, we will give you a chance to put anything you want to say in the chat uh at the end. And Jackie, we'll thank you for your thank yous. I just like you have given us as much as we have you feel that we've given you. I I think we've answered all the questions. Oh, somebody's coming in. Um, just she's an hour late. I hate to. Hello, Robin, but we are ending. But you're welcome to hello, welcome to the group. And we are about to end the podcast, but um you're probably in a different time zone. But I'm so glad you guys were here. If you want us to do it again, if you would do us the honor of telling anybody you know of that needs to hear, we don't make any money on this, by the way. This is not a moneymaker, this is just a give back to the world and help each other through kind of thing for us. But the more people that know about our podcast, we got 40 episodes out there now. If it helps them, we want them to know about it. So invite them to hear our episodes, to join our Facebook group, to follow us on Twitter. Again, it's SZ3M's Trenches. You know, if you it's in our show notes and everything. So um you can just honor us by spreading the word and keeping your questions coming in and and keeping the community alive by helping each other. And um thank you so much, Mindy and Mimi. It's always someday we'll do this in person, ladies. Um, it's been great. Thank you. And yeah, oh, and thank you, Sheila, about the books. Yeah, buy the books too. That's good. Because if you want the full story of how we went through, only you put a little heart. I appreciate that. It's been behind his voices, fix what you can. He came in with it, and my latest is Happier Made Simple. You honor us with your presence and your stories, and thank you so much. If you wish, before you leave, you can put a word or a sentence in the chat for how you felt about tonight. And we hope you'll come back. Thank you. 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.