What Do I Do Now?: THE Handbook for SZ Caregivers: guest, Nicole Drapeau Gillen (Ep. 83)

Schizophrenia, a complex and harrowing illness, presents an ongoing challenge for caregivers. In this groundbreaking book, discover the missing links that empowers you to navigate the labyrinth of decisions and actions required to provide the best care for your loved one.

Nicole Drapeau Gillen is a mother who recognized that caregivers like herself often find themselves thrust into this challenging, complex and stressful situation with little clear guidance on how to help a loved one with a serious mental illness.

Her goal is to create a practical and actionable handbook that offers valuable insights into caring for your loved ones facing this formidable condition.  With a 35-year background in the business world as a former IT executive and Chief Marketing Officer (CMO), NIcole now aims to channel her skills into a more meaningful endeavor - supporting fellow caregivers.

She lives in Virginia and loves teaching fitness, taking care of her family and learning how to be a better caregiver.

This book addresses everything from setting up disability support, to legal support (guardianship, conservatorship, or power of attorney), to financial support (Supplemental Security Income, Social Security Disability Insurance), to insurance (Medicaid), to estate planning and trusts. It further provides resources on the role of the government, jails, rehabilitation, housing and homelessness.

• What was your motivation for writing this?
• 3 moms - what are your favorite sections?
• Nocole - What's happened since the book has been released?
• Is there anything I would have done differently, now that it is released?
• What kind of response have I received, and from whom?
• What has surprised you most in the responses?
• What's next?

Links:

Schizophrenia and Related Disorders: A Handbook for Caregivers: https://www.amazon.com/Schizophrenia-Related-Disorders-Handbook-Caregivers/dp/B0CQMM889H

Schizophrenia and Other Related Disorders. Handbook For Caretakers 

Nicole’s 

 Website,

 Facebook page; and 

Tiktok.

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

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Transcript

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SPEAKER_02 0:00

We get our PhD in serious mental illness within the first five years. Along with our own master's in social work, we become experts in SMI pharmaceuticals, medication management, and evaluating SMI symptoms. Once you learn that the system is in fact not a system, you become an advocate to change the lack of system with the hour and a half you have before bedtime because you know you have to work a full-time job in the morning. To say caretakers face headwinds is a gross understatement. We're facing category six hurricanes. And I was like, this is it. Like if I, you know what? I mean, this is our reality.

SPEAKER_03 0:39

Yep, these are the challenges that face caregivers caring for people with schizophrenia and related disorders. Nicole Drapo-Gillen found information here and there, but she couldn't find a definitive handbook. So she wrote one. Nicole is our guest. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye. Welcome to episode 83. I am very, very excited about our guest today because I have in front of me the post-it notes. You can't really see it on YouTube, but anyway, the post-it notes that I wrote when I first spoke to Nicole before her book was published. And it says, Caregivers Handbook, three publishers already interested, schizophrenia and psychosis, a handbook for caregivers. And I was like, oh, let us know when it happens. I'm so excited. And the book has been published. And the title says it all, and is the title of this episode as well. Mimi's got hers. I've got mine.

SPEAKER_00 1:57

And as usual, I'm unprepared.

SPEAKER_03 1:59

Mimi doesn't have hers handy, but that's okay. Um we are going to talk about what do I do now? The, and I mean it this definitive, the handbook for schizophrenia caregivers. The actual title of the book is Schizophrenia and Related Disorders, a handbook for caregivers. And when we bring Nicole Drapeau Gillen on, we will talk all about it. I do want to welcome our new listeners to the podcast. We are three moms who have written three books. We have three sons, um, adults chronologically. They all have schizophrenia, and we're doing our best. Now we keep on keeping on. I'm so excited this week because we heard from so many listeners, from Australia, from China, just to know that the podcast is reaching people all over the world. If you're new to us, we are we're like a grassroots podcast. We don't even have uh, you know, an official website. Our website is on our podcast host. So you can go to uh Buzz Sprout and see our podcast there. But what we want you to know is that we're making no money on this pod. This is not a money-making, this is a Contribute to the World podcast. As you can tell, my cat's meowing out the door. I desperately need a haircut. We are just trying to help other people to help make the most of what our families have been through. And people have asked me, well, what can I do to support your podcast? You know, and Mindy and Mimi, feel free to chime in. But I'm just gonna say one thing you can do is either buy our books, read our books from the library. If you haven't, it's He Came In With It by Miriam Feldman, Fix What You Can by Mindy Gryling, Then Behind His Voices by Me, Randy Kay. Uh, they're all available in audiobook as well. My audiobook happens to be an updated version because my original book came out 10 years ago. So you can buy our books. And if you've read them and you like them, please put a review on Amazon. Let people know about the books because we also talk to a lot of other authors. There are other fantastic books, and you'll meet one in a moment tonight. But just spreading the word is what you can really do. Join our Facebook page, just go to Facebook and search on Schizophrenia Three Moms and you'll find it. If you like the podcast, please tell people about it. Put a review on Apple Podcasts or, as they say, wherever you get your podcast, give us a five-star rating, give us a review, let people know about it because I'm starting to get contacted at randy at randyk.com, which is kind of on the conduit. Oh, I can increase your SEO for millions of dollars. And I'm like, our listeners will do that. So please help us out. If you are part of an organization that can use a keynote speaker or a panel, we're available. And the last thing I'm going to mention is we are trying to get an episode about antipsychotic medications and teeth. And I haven't yet found a dentist willing to be on the podcast. I haven't asked that many. I've just asked like locally. But if you happen to know a dentist who knows a lot about the effects of medications on teeth and what the options are, what we can do, that would be a really helpful episode. So just uh write to randy at randyk.com. I spell my name with a Y-E on the Randy and on the K. And that's how you can support us. And you can contact us most easily on our Facebook page. Mindy and Mimi and I all answer your responses. Um, if you're gonna post something about how magic mushrooms have helped you, I'm telling you, we're gonna delete it. We're not about these magical solutions. Thanks. But if you're trying to sell anything on our website, that's not what we're about. So anything to add to that? Does that make sense, cohorts?

SPEAKER_01 5:57

I just want to say to the listeners that both Mimi and I, I think I can speak for both of us, really appreciate Randy for all that she does. You know, she is the conduit for whenever we have a speaker, if Mimi or I get one, we turn them over to Randy, who sends all the information and always, but okay. Does the technology and you know, has the know-how being a radio person and working for NPR. So we really appreciate you, Randy. And then I also wanted to say all of what Randy said is totally true. And one of the nicest things that somebody wrote to us this week, which we hear all the time, but I just want to highlight it is this person, uh, we we referred that we always refer people to others or other organizations because we're as you know, right moms with our school of hard knocks, and we learned a lot, but we try to refer to professionals as well. And after this mother had gone to all the places that were suggested, she came back and sent an email that said, of all the places, you know, the organizations and resources, what she got the most help from is our podcast because we we give heart and soul to this whole issue.

SPEAKER_03 7:20

That's so nice to know. So, you know, that's awesome. And we're all available to tell our stories to uh pharmaceutical companies, to your agencies. I know each of us has done that, and just you know, spread the word basically is what it boils down to. What we also want to do is uh to uh let people know about resources and uh last week we've had a lot of great reaction to having Judge Lifeman on, and this week I am just so thrilled to bring on Nicole. You can go ahead and start your camera to bring on did I say your name right? Honestly, perfectly.

SPEAKER_02 8:02

I was like, wow, I mean most people like completely butcher my middle name and it would flowed right off your tongue. So two thumbs up.

SPEAKER_03 8:09

Awesome, thank you. So yeah, welcome, Nicole Drapeau Gillen. And this is the book. If you're not on YouTube, I'll read the title to you again, Schizophrenia and Related Disorders. It looks like a paperback textbook, and indeed that is what it is. It's a handbook for caregivers. And I just even just reading the table of contents, it's it's ever if I'm I'm blown away. I'm blown away. We read some early versions of it, but the work you've done, your loved one has been diagnosed. Now what? Key terms to know, the home and communication, medical matters, um, chapter six is insurance, legal, HIPAA, and more. The role of the government, and for me in particular, as you know, my son is currently almost six months in jail pre-trial for something, and uh, you know, just waiting for a bed and jail diversion. So I was thinking of writing an article about what you need to know if your loved one gets arrested or incarcerated, and I don't have to because you did it. So that's fantastic. Um, housing and homelessness, clinical trials, documents and templates, it's all here. So welcome. Wow. You even said in your in your um introduction, like you were able to get information in dribs and drabs, but this throws it all, and you know, I'm not gonna speak for you. So tell me how this book came to be and tell us and why.

SPEAKER_02 9:48

So I will, but I just honestly like I want to thank you guys because the point Mindy was just making, you know, a year and a half ago, as I was just feeling overwhelmed, feeling under prepared, feeling lost, feeling helpless in so many ways. And someone, I don't remember who turned me on to your podcast. It's so heart-based, and yet it's practical, right? And so, and and and I just felt like I could learn. I was like, oh, that's a great tip. Oh, that's a good idea. Oh, I need to, I need to, yes, yes, yes. And yet I I always felt walking away enriched. So I just wanted to start and say thank you because you guys have been my beacon in terms of how to think about this as I started on my own journey.

SPEAKER_01 10:45

You're welcome and thank you. On page 99, you sank us back by listing our podcast as a personal section and said how much it helped you. It's kind of what you just said right now. So thank you for that. Because that'll help other people to find this same kind of help, which is why we do it. Like Randy said, we aren't paid, we want to help people. Yeah, no, I agree.

SPEAKER_02 11:08

Um, so you know, I'm I don't even know where to begin. I I talked to both of my kids today. I'm like, can I say this? How are you comfortable with this? What about this? What about that? Because, you know, it's just it my story begins, or our story begins 24 years ago when my husband at the time left, me and my one-year-old and two-year-old. And so I became a single mom to two babies a long time ago. And my younger daughter actually uh early on showed signs of mental health issues, anxiety, depression, really severe ADHD. So I was thrown into the world of medication and therapy and all those things years ago. So when my older daughter got sick about four years ago, I was like, oh, I know how to do this. I got this, I know how to talk to doctors, I know about medication, I'm good, no problem. And I quickly learned how naive I was and how complicated and frustrating. And, you know, for my older daughter, the one who got sick with schizophrenia, um, you know, it came as a shock. She was living overseas. She had gone to school in Scotland. It's where she got her degree from the University of Edinburgh. She was living this large, beautiful life in a foreign country. And I was like, Jack, successful mother, I got the badge, I did it, she's good. She graduates, and six months later, the wheels fell off the bus. And I, you know, and and oh, by the way, I mean, not to get too too specific, but as as her psychosis was building, this thing called COVID came roaring in. And it was literally that first week of March of 2020 when I flew to Scotland and I was like, hey, good news. You're shutting down your apartment, you're quitting your job, we're putting yourself in storage and you're coming home. And so I ripped her away from her life because I could, I could see that things were very, very wrong. And then COVID happened, and trying to figure out all of this while COVID was happening, um, it was a mess. And I did everything wrong, partially because I I came into thinking, I got this, I know how to help. And um, and oh, I got some skin knees in the process of trying to move her in the right direction. And you name it, like all the things, all the things that we all face in terms of multiple hospitalizations. You know, she was on four antipsychotics before I got her on clozepine, you know, praise clozapine. Um right, pray praise the Latemans. Um, and uh, you know, bunch of bunch of hospitalizations. I had psychiatrists who fired us because they're like, oh, she's too sick. I can't help her. But then hospitals wouldn't take her because she wasn't a threat to herself or to me. And so there was this gray zone of the psychiatrist couldn't help her, hospitals wouldn't take her. What do we do?

SPEAKER_03 14:27

Um, and you also I know at this point your younger daughter is relatively stable at this point.

SPEAKER_02 14:33

She is. She um she has a local job, she's doing IT sales, she's on good medication, she's she's killing it, right? My younger one is is is um, she's she's acknowledged and embraced her own issues. Uh unfortunately, that they were both born with these things, obviously. Um, and and really, really on a good path.

SPEAKER_03 14:56

So you're dealing with it sort of one at a time, one, and now you've got the older one. Okay, and just you know, FYI, uh, if if you're a first-time listener, um the Lateman that we're talking about is Dr. Leitman. There's a whole episode on that uh talking about clozpine. And Mimi and Mindy's son sons are on it. My son is not currently on it, but doing okay on what he's on for the moment. So you can look for that episode, Dr. Leitman, and there are resources there where he can recommend other similar psychiatrists who can help you. So just so you know that. Okay, so and with women, often schizophrenia comes later and more surprisingly, right? So with our sons, it's usually mid to late teens where things start to gradually, and again, it's typical, it's not always, it's just the typical prodrome of schizophrenia. With females, it often comes later and more suddenly, is what I have learned. So that's what happened with your daughter. Okay.

SPEAKER_02 16:00

Yeah. I mean, there was there was an inkling that something was off when she graduated college. Like it she just didn't seem like herself. But then I thought, oh, Nicole, you're projecting, right? Like you're just sad that she's living overseas, you're just not happy that she's not here, you know. And so I just I dismissed all of the things that I thought I was seeing, and come to find out, no, no, no, it was absolutely part of it. And the other thing was because she had been living overseas for four years for all of college. And she would come home for Christmas or summer, and so I'd see her for little snippets at time, and I might think, well, it doesn't seem like her, but oh, it's must, you know, it's teenage. We normalize, we write, you know, yeah. So, anyways, it hit us like a freight train and uh brought her home, and I stumbled all over the place and and just um was personally not in a good headspace, and then finally, you know, the Latemans took us on as a as a took her on as a patient, us, her, me, whatever. And um, you take the whole family, right? I mean, it's yeah, and so that's when I um after we finally got her to a good point, I I was like, so the other my other sort of big part of the story is for those two years when we were struggling and we were going through all these hospitals and antipsychotics, and I just kept seeing her getting sicker and sicker and sicker and sicker. And I was joining groups, I was joining Facebook groups and and NAMI groups and you know, all these different support groups. And what pissed me off is I'd be on these calls, and someone would say, Oh yeah, I did the bloody blah with the bloody blah, and I and I'm like, wait, and I'd write it down, and then I'd be on another call two weeks later or a different support group, and somebody go, Yeah, the bloody blah with the bloody blah. And I'm like, I didn't even know that existed. And I write that down, and it kept upsetting me that I couldn't, there was no like place that had all this information so that I knew what I needed to do. And it was somewhere in this interval where I discovered you guys, and I'd listen to your podcast with a pen and paper, and I'd be writing down notes. No, literally, you guys, like it was so important because this information wasn't anywhere. And so I'd be writing down notes, and you would have a reference to this or person about that, or information about this, and and and and it was in this process that I realized I was like, okay, I need to organize my thoughts, if nothing else, for myself, which is why it started out as like a Google Doc. I'm just gonna organize my things. And then as I move forward to auto-organize my things, I'll just create a little pamphlet, right? I'll hand it out to my buddies, right? Like, hey, here's information on SSI, hey, here's information on this. And I was like, okay, well, maybe I'll just maybe be a little bit, maybe it'll be like a pocket guide, right? 20, 30 pages, and then da-da-da. And then finally, one day I'm like, oh, for the love, Nicole, just write the book. And that's when I dug in. So, so I do have a couple of slides though that hopefully might sort of frame everything up for the listeners. But but at the end of the day, that's my story. That's why I wrote it. And um, yeah. All right, are we? All right.

SPEAKER_03 19:22

So, you know, thank you so much for for that background because I honestly didn't know why you wrote the book. I just knew it was there. But let's um, if you're watching on YouTube, obviously you're going to see a little slideshow. Uh, and if you're listening, you can um go on to YouTube later and and watch it. But I think, Nicole, you'll pretty much explain what's there. You can always um ask me on Facebook and Nicole if you want to make this available or if they can get in touch with you. If you want to make this available, you can send the slideshow to them, but it's probably all on the book. All right, so we're gonna learn this about five minutes of uh slide presentation, or yes. Yeah, yeah, yeah.

SPEAKER_02 20:02

And if you need me to go faster as I go through it, just stop me uh and tell me. Um, the other thing is some of these slides are wordier than I'd like, but they're usually like a quote, it's an extract from something, and I didn't want to diminish sort of like the totality of it, but I will talk you through every slide. Great. So this is a good example. So this is actually a direct quote from a friend of mine on Facebook who is a caregiver. And when I was telling her about coming on this podcast and this and that, she wrote this to me. This is verbatim. And I asked her if she would be okay if I put this out there, and she said yes. And I just thought it so encapsulated the reality of our world as a caregiver, where, you know, first bullet, we get our PhD in serious mental illness within the first five years, along with our own master's in social work. We become experts in SMI pharmaceuticals, medication management, and evaluating SMI symptoms. We become experts in LEAP, which is, you know, wonderful, CBT and DBT. With no housing that heals or long-term psychiatric hospitals, we navigate SST, SSI, Medicaid, and Medicare. Once you learn that the system is in fact not a system, you become an advocate to change the lack of system with the hour and a half you have before bedtime because you know you have to work a full-time job in the morning. And the challenge is not easy, fair, ethical, humane, supported, or even understood by the very people who are evaluating, making laws, and policy. Mindy close your ears on that part. To say caretakers face headwinds is a gross understatement. We're facing category six hurricanes. And I was like, this is it. Like if I, you know what? I mean, this is our reality.

SPEAKER_01 21:51

And and and that's why I'm trying to break in here just one minute. Yeah. So, yeah. So for people who are just watching for the first time, Nicole's reference. To me, was I served in the legislature for 20 years. So I obviously knew all of this and I educated a lot of my colleagues. And there were more of them like me than had come forward to begin with. So by us talking and advocating, we um get people to um start working on something they know they should, but they haven't come forward about their own families yet. And then I just want to say I was almost late to this podcast because the other thing you can do if you don't have good uh elected officials, I just I have a political button here, vote Tara. And I just came right before, just got here like two minutes before this podcast, because I co-hosted and spoke at a political fundraiser for a county commissioner in my area, someone I've known for years and years. And she had a son who died actually because of his serious mental illness, but she's now giving back. So we can influence policymakers, and if we don't have enough that are informed, we can recruit them, help them, get them elected, and then we reap the benefits. So always be politically active if you're not satisfied. In our spare time. In our spare time. But yes, absolutely worth it. Yeah.

SPEAKER_03 23:16

No, and if you don't know what LEAP is, we have an episode on that as well with uh Dr. Amador. So you can check on that. If you're watching on YouTube, I've already put it on the screen. All right, Nicole, great slide. Keep going.

SPEAKER_02 23:28

Rock and roll. So, left-hand side here, this is an NIH study. Did you know that NIH did a study on caregivers of SMI? And and I without without boring you with all the information, I was shocked that on the NIH website, if you look at the bottom part in bold, they talk about the tumultuous journey, fumbling in the dark to grasp the incomprehensible on your toes, enduring unpredictability, facing different forms of fear, illuminated by three something. We won't get into those, and battling waves of sadness and regret. Like this is from NIH talking about how hard this is. And, you know, I just, these are some stats that came out recently. According to NIH, right or NI NIMH, there are 14 million adults that have a serious mental illness in the United States. There's a lot of people out there. And according to the National Alliance for Caregiving, and this is based on elderly caregivers, but you know as well as I do, if you're a caregiver, someone with an SMI, it can be even harder. And that there's at least 20 hours a week. Well, if you take 20 hours a week, if you look at the very bottom row, 20 hours a week, if you assume it's half of the 14 million, 7 million, you're talking 340 million hours per week of caregiving. If you take that, if you extrapolate that, that on an annual basis, it's 17 billion unrecognized, unpaid for hours of caregiving. It's it's it's just mind-blowing how much time and energy we have to put into this as caregivers for our loved ones. It's just, I don't know. As I looked at the statistics, I was like, yeah, it's a huge problem. But in addition to that, there's a personal cost of caregiving. And some of which are hard costs, some of which are soft costs. But if you start in the upper left and we kind of go around like a clock, there's obviously direct financial costs, your medical, your professional care services, travel costs. There are indirect costs in terms of, you know, maybe lost income or an impact on a career, a job you can't take because you have to be home. Time-related costs, which we just talked about, emotional and psychological costs, burnout, impact on a caregiver's mental health. If you go to the bottom right, you know, healthcare insurance, the premiums, the deductibles, legal, administrative, right? Setting up things like power of attorney or conservatorship or guardianship, administrative education costs, the constant researching and trying to get your hands on more information. And then social costs. I don't know about you guys, but for years I didn't talk to my friends about this. Heck, I barely talked to my extended family about this.

SPEAKER_03 26:34

And so it's it's not where they go, oh, here comes Nicole with more stories. And they like, you know, I when I would talk to people about it, sometimes they were like, I can't hear this again because there's no timetable for recovery.

SPEAKER_01 26:49

Exactly. Exactly. I really um admire you and empathize with you that you mentioned because you're a single mom. You know, my husband today spent four and a half hours with our son taking him around to meet some deadlines. He hadn't gotten his mail at his apartment for three weeks, and all of a sudden he had three things that were due, or his benefits were going to end for this, that, and the other thing. So Roger went around to the bank to get the statement to where he works to get his pay stubs, to get things hand delivered, to go pay his rent because his payee didn't pay it in time and he had $300 and some dollars of lapees. You know, that was uh with my partner, not counting all the things I do. So I think as a single mom, it must be, you know, incredibly that much harder to have to do all of that yourself. So I'm glad I hope you have a good support system.

SPEAKER_02 27:44

I'm my parents have been phenomenal. I just am so lucky that I had the parents I do. And my other daughter has been phenomenal in supporting me. It was really interesting because when my older daughter got sick, my younger one just, yeah, I mean, she just absolutely stepped forward. So thankfully I have I do have a wonderful support system. And honestly, Mindy, it's one of the reasons why I finally had to quit my corporate job. I was like, I I can't anymore. I can't work 50, 60 hours a week and then do this for 20 to 30 hours and try to get, you know, a few hours of sleep every night and try to live any kind of life of my own. And I, you know, I'd be lying if I said this hasn't been just um a hellacious couple of years.

SPEAKER_03 28:34

And as, and as we've said before, and Mimi, I'm curious if this, I've never seen it all on one page like this. So, Mimi, I'm curious about your reaction as well. But here we are, you know, middle class white women who had corporate, you know, I mean, it's just like we're women, I'm not rich by any means. And I did most of my helping my son as a single parent. I'm just, you know, remarried 15 years ago um happily, but you know, did a lot of it as a single. And as we've mentioned before on the podcast, I don't want to speak for other cult, you know, for other cultures, but I I do want to mention that we have white privilege, and it can be even worse for people who are, you know, in a minimum wage job who can't, you know, so yeah, it's bad, and some people have it even worse. Mimi, anything to add about that?

SPEAKER_00 29:22

Yeah, no, you said what I was thinking. I mean, we have to always point that's okay. We have to always point to that and remember that because we are in a sort of a rarefied world, most of the people that you know, the three of us and a lot of the people that we have on the show. And um there's a lot of people out there who can't even begin to access this.

SPEAKER_03 29:49

Yeah, but that's why this handbook will be so helpful.

SPEAKER_01 29:53

Yes, my husband and I both are retired now. So otherwise, if we weren't, you know, who could take four and a half hours out of the workday to run around doing all this stuff that really should be some kind of mental health worker's job, one would think, but but instead it's left for the families. Yeah.

SPEAKER_02 30:10

Oh, I mean, I I I had I had uh work video calls when my daughter was in a psychiatric hospital and I'm in the waiting room, and this is during COVID, so I've got a mask on and I've got ear pods on, and I've got my computer up, and I'm trying to be as quiet as I can as I'm taking this work call. And you know, doctors are walking by and you know, doctor flags me, and I'm like, oh, hold on, John. I put them up pause, I lower my computer, I talk to the doctor, I put my computer. I mean, it was just ridiculous for years, for three years I've I've lived that life.

SPEAKER_03 30:42

All right, so let's uh let's move on. I know we're all talking. We're gonna be a three-hour podcast.

SPEAKER_02 30:47

Trust me, I'll speed it up. So, but but hey, good news, right? Caregivers have material impact. So, you know, from a treatment perspective, when you know, when you know the right information, when you can, when you can apply the time and effort is required, you know, we can reduce hospitalization rates, we can, we can help with medication adherence, we can increase treatment engagement, we can have prevention of relapses, we can improve daily functioning and social functioning and coping skills, and then even for ourselves, ultimately reduce our own stress and improve our own mental health. So the reality is, is when we're equipped with the right information, all boats rise, right? So there is good news at the end of the tunnel. And and I know this is gonna sound ridiculous, but I don't know if you guys are familiar with Dr. Seuss and the Lorax. He has a wonderful book about the Lorax and the trees and how the Lorax speaks for the trees, because the all the trees are getting chopped down. And it's actually kind of a sad book. But in many ways, as I started writing this book, I started feeling at the Lorax, right? And speaking for the trees, speaking for these caregivers and for these people who needed this information and didn't have it. And so this is my personal mission statement. This is my personal big, hairy, audacious goal, which is as we all know, knowledge is power. And so my mission is to empower and enable as many families in the US with information so they can help their loved ones to be faster and more effectively, you know, helping them over the long term. So that's that's what's always been in the back of my mind. And so, you know, in the United States, the reality is everything from healthcare, hospitals, and doctors to legal issues to you know, uh financial and insurance issues with SSI, SSDI, and Medicaid, to how jails and the police work, to how housing, government, and sub and and other government supports work are different in every state. Yep. And there's like eight different categories, right? All of this is different in every single state. So how do you how do you do this? How do you, if you're in Nebraska and I'm in Virginia, you know, AOT is different, black robe is different, healthcare, hospitals, housing, it's all different. So what I try to do in the book, and this is my last big slide, just so you guys all know, is um cover the journey. And that the journey doesn't stop once they're on the right medication, because who knows what can happen at any time. Um, and so you know, I started with the beginning. And as I wrote the book, I was thinking about this stuff. In the beginning, right, we are all hyper-focused on hospitalization. Are there case managers or social workers who might help me? What do I need in terms of doctors or nurse practitioners or who is my who's my medical support team? To what's the treatment modality? What's the medication? What am I doing along that line? What questions do I need to be asking? What do I need to be worried about? What about side effects? What about this? What about that? Right? Randy, you took you brought up dentists. I will tell you, interestingly enough, and I was really surprised you said that, because just recently I took my daughter to the dentist. She had 16 cavities.

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SPEAKER_03 35:11

Yeah, there's something with the the medication and the saliva production, and we we wanted to do a whole episode on it.

SPEAKER_00 35:18

Um

(Cont.) What Do I Do Now?: THE Handbook for SZ Caregivers: guest, Nicole Drapeau Gillen (Ep. 83)

SPEAKER_00 35:19

well, and not to mention that I don't think that I'll never forget the day I went uh to my son's house and I opened a drawer in the kitchen for something, and there was every toothbrush and every tube of toothpaste I bought him in the last seven years stuffed into this one drawer. I don't think he brushed his teeth for seven years.

SPEAKER_02 35:37

Yeah. I uh look, I'm gonna tell you, I don't think she was brushing her teeth either. But I do think it's a combination of the medications and not brushing her teeth, right? But so I think that's a really interesting point. Um, then there's ongoing issues. Communication between yourself and your loved one. You know, what is all this? Um then, you know, uh the the gentleman who painted the cover of the book, Rob Ramos. You know, I I love Rob. He's he and I become very close friends since the book's been published. And he was reading it. He's like, you know what? No one ever told me these terms, positive and negative symptoms. No one ever talked to me about anasygnosia. He's been struggling with this disease for 10 years. And he's learning all these things that he never knew.

SPEAKER_03 36:25

See, we, some of us have gotten it at Family to Family from NAMI, which is the one thing that is an ordered eight-week course that gives general information like this. So, but I don't know if people with schizophrenia get that information or if they even want to hear it.

SPEAKER_02 36:42

So yeah, and he he he does and he didn't. Um, you know, support groups. That was the other thing that I kept scratching my head. There's all these websites out there that um purportedly help this population, but I couldn't figure out how they helped me or my daughter. I couldn't figure out how to engage with them. And I was like, I'm confused. And I feel like I'm a relatively intelligent human being and I couldn't figure it out.

SPEAKER_03 37:09

Yeah.

SPEAKER_02 37:10

Um, and then you know, ongoing the paper trail. Oh, the paper trail. How every hospital, every doctor, every everybody wants to know they want the big history and the small history, they want the medication history and the weight history, they want the, you know, you know. If they ask. Yeah, if they ask, right? And then there's all the stuff that can happen anytime. You know, all the crisis stuff, suicidal ideation, arrests, somebody who might run away, you know, Randy, right? Navigating jail and police, which, you know, you never know when that might come into your lives. And then, of course, housing and homelessness, housing being just an enormous issue, and and how one deals with homelessness. Then, of course, there's your legal issues, your uh legal in terms of as the caregiver, what structure you need to have in place based on your loved one. Then there's legal issues of whether or not you want an advanced directive for your loved one or not, because there's pros and cons and financial issues, and how you get all that structure set up. And then there's your long-term stuff. I mean, I don't know about you guys, but that terrifies me, right? If when I I'm a single mom, I mean, my kids haven't spoken to their dad in years. If something happens to me, how do I know they're gonna be okay? How do I build that right estate planning structure? How do I make sure that I've got that they understand budgeting and and ultimately that there's this transition to self-support for our loved ones?

SPEAKER_03 38:56

Absolutely.

SPEAKER_00 38:57

You've summed it all, you've summed up the struggle with the well, and also the transition to self-support is not even an option in so many uh cases, you know. I mean in such a huge proportion of the population, there's not even an issue. It's never gonna happen.

SPEAKER_02 39:15

Yeah, right, exactly. And and so, and so then what? And and so I have a whole section, obviously, in the book, that talks about how to set up that structure so the right people can help you know your loved one. Um, and that's it. I mean, this is just a quote from Bethany Yeaser from the Cures Foundation, where um, you know, she she she found the book to be awesome. So um I will stop sharing at that.

SPEAKER_03 39:44

No, this is this is great. Um it it it it tells everything that's in there. And I have to say, it is so beautifully laid out, easy to follow, easy to highlight. How has it been going? I mean, has it been selling? Have you had good reactions from people? Like, what has happened since the book has been released?

SPEAKER_02 40:04

Yeah, um, so yes, it is selling. It's fascinating. I don't know who's buying it, right? Like I check on the Amazon website and I see that you know, another couple books in my bot, another couple books in a bot, and I'm like, how do these people know about it? So it is selling every day more and more, which is phenomenal, makes me very happy. Um, what's fascinating is I'm getting emails from people from around the world who are saying, like one person from the UK and one person from Canada saying, we need this, we need this in our country. And so much of what you written is still applicable in our country. And I wrote it with the US in mind, but apparently we're not the only ones that are a complete disaster when it comes to serious mental illness.

SPEAKER_01 40:54

You know, one thing that I think was really smart that we in this podcast use as well. You use the name schizophrenia in your title. And so we have schizophrenia, three moms in the trenches, you have schizophrenia and related disorders, the care handbook for caregivers guide. People Google, you know, when they are faced with schizophrenia, they Google schizophrenia. So there's when you're dealing with schizophrenia, you don't Google mental health and think you're going to find what you need there. So I think um we just have to say that that gives you an audience when you use what we're really talking about. It's a whole different ballgame dealing with schizophrenia. And so often, so much is lumped into the whole general conversation. And I think that's why people find such solace in this podcast and will find solace in your book. Because if they go to like a NAMI group and people are talking about all the mental illnesses, you know, you can get a lot of things out of that. There's a lot of continuums and common things, but this illness is so different than all the others, and I think that's really smart for you to have schizophrenia in your title.

SPEAKER_02 42:11

Thank you. I appreciate that. It was not, it was not, it didn't come from a place of genius. I was just like, schizophrenia.

SPEAKER_03 42:23

So um I have shared that one of my favorite, because it's what I'm going through now, was the would have been much needed chapter. I learned all this stuff by hook or by crook in the last six months, but I don't know of any other place where I could have turned to when my son got arrested and found it and gone, oh, I need to do this, I need to do that. And so at the moment, that is my favorite. Like I didn't know you have to call the police and claim their possessions and then call the courthouse and claim their possessions and actually call the uh correctional center and get their wallet. Otherwise, you know, like I didn't know any of that. And so, whatever you're going through, wherever you are in your journey, honestly, there's a chapter for it. The the information about HIPAA, the informate, there's templates at the end. Um, Mindy, I know you've gone through it. Do you have anything? What was your favorite part of it?

SPEAKER_01 43:18

My favorite chapter actually was the first chapter because I think it kind of um exemplifies what the whole book is. You know, you Nicole mentions that at the very beginning that you can read it straight through, or you can read the first chapter, and then you know what all the different chapters are. She gives a preview of every single chapter, what's in there, and then you can read the whole thing, or you could do what Randy did and look for where you are right now and what you need, and just read that chapter. I have to say, I skimmed through all the legal stuff. There's quite a bit in here for people that haven't done that yet. We our family just met with a an attorney and set up all of the things that you mentioned. We did that a uh a year or two ago. So I didn't need that chapter. You know, I just I thought I could um write that chapter, those chapters myself. You know, we did that. But if I had had that this book three years ago, even I would have read it before we met with the attorney. So I think the first chapter is very beautiful because you've laid out so well what is in the book, and then people can go. If you're neophytes, read the whole thing. If you're further along, then read what you need. So I I really like the format of the book and that first chapter. is wonderful.

SPEAKER_00 44:41

I you know I can't tell you how much um I'm sorry. It reminds me of uh surviving schizophrenia because when I first found that book I read it cover to cover uh that's e fullatory e-tory e-fulatory I think Nicole recommends it as I do right yeah but I mean that book I've picked it up so many times it's like an encyclopedia and this book has the same sort of a structure yeah I appreciate you guys saying that in fact in my head I always thought it thought of it as what I'll call a kitchen table book right I always sort of had the vision that somebody has my book open and they're looking at a section and they've got their computer up and they're looking at okay oh I need to learn more about jails or housing or disability or whatever it is and they're reading it and they're like okay this is the state I'm in here's some of the keyword search terms I need to be looking for right and they this is their starting point as they dig into where they need to go to do whatever they're trying to do. One thing uh you know I have to tell you when I started with all of this it was 20 years more than 20 years ago and you know the internet wasn't what it is and um the just by hook or by crook I managed to find my way to family to family. If I hadn't done that I don't know what would have happened. But um there was just no discussing this nobody talked about it.

SPEAKER_03 46:06

And um there's so much more now and you've sort of laid out this map for people like one of my uh favorite lines in my own book is would somebody please give me the mother effing map because there wasn't one and there is now right and they and surviving schizophrenia gave me a lot of information about the illness yeah but it didn't it didn't and couldn't you know provide the resources what a daunting like how long did it take you to write it and would you do anything differently now that it's been released?

SPEAKER_02 46:43

Yeah um so it took me the better part of all last year uh I took about uh six weeks off work off my corporate job just full time sabbatical and I just sat on my my couch and I just wrote for eight hours a day I just wrote and researched and wrote and researched and wrote and researched and that's all I did. I actually went to the beach with my family and I was like all right you guys go out I'm writing and researching and writing and researching because my goal was to get this thing published in 2023 by hook or by crook. If I were to do anything differently I think I probably I on one hand I would love to have started sooner but I probably was not emotionally ready. I was probably in too much of an angry bitter place although I'm still fairly angry and bitter um and what's that I said that's honest. Yeah I mean honestly those first couple of years just I mean to see this just beautiful uh and just so smart so social so just wonderful wonderful be human being on every level get decimated by this disease where you know at one point she shaved her head she gained all this weight from the antipsychotics and the doctors didn't seem to care and here I'm looking at this child and I've I thought I lost her for good you know at one point so I was so angry at everything and everybody um and the book started becoming an outlet for me of just pouring all of that into a more productive way than railing at the sky. And I think um and I and maybe I would have quit my corporate job sooner. So I could have been more present with her and worked on this sooner and maybe even done a better job. Like I feel like I did a pretty good job but I feel like I could have done an even better job had I done a bunch of that. So I mean I hope and I hear from people that it has absolutely changed their world like people are already telling me it has literally changed their world and I can't tell you how amazing that makes me feel but you know I have to keep telling myself this is not about me. This is about everybody else and trying to do what I can for for everyone who's been in the same situation that we've all been in.

SPEAKER_01 49:15

One thing that I think um I don't know if you'll be able to keep up the pace that you mentioned you said you hope to update it annually and I would encourage you to not quite do it that often or you might wear yourself out. But um I think that is a really good goal you know with being able to do things on the computer and you know we don't have to redo everything you can just edit as you go. But I think um to take input from lots of people that want you to keep it updated that people will help you. For instance I read the chapter you mentioned your daughter's weight gain and I read that chapter and I saw you had in there nobody had told you about medformin. And I nobody had told us about medformin either until we came across the doctor's lateman. But um but now that is one tool in the toolbox but our son is on Munjaro where he's lost even more weight than he ever did on um medformin where he plateaued. So when you do your next one I hope you cover you know those kind of drugs so LZ and Munjaro and others um so there's I think people will just always help you in addition to your own things that you learn as you go along you will hear from others as well if you especially put out the word what sections do you have suggestions? I gave a suggestion to Dr. Tory if he ever writes another surviving schizophrenia because he had in there that people probably aren't going to be playing instruments or being musicians anymore if they have schizophrenia. And I told him about this really talented musician who performs in supper clubs and and other bigger venues here in Minnesota. So he you know suggested that he revise that one and don't put such a damper on people who um who are musicians that could continue on. So I think um that's a really good way to think about your book and you will always be updating it. So to get it out there now was uh brilliant and then you can keep going but I would suggest maybe not every single year.

SPEAKER_02 51:25

Oh see Mindy this is where I'm like I'm I I don't know I don't know what drives me there's some sort of weird thing inside my body that just makes me go at a pace that when my kids were teenagers and they'd wake up in the morning and I'd be like good morning and they're like shut up you know and I still have this in me this like drive and so I'm going to be updating this book every year. But wait there's more I'm going to I'm thinking about doing a version in Spanish something that was recommended to me right because there's an enormous Spanish population in the United States that need this kind of help. I'm thinking about doing a Canadian version now um I don't know like and in addition to continuing to update this book.

SPEAKER_03 52:15

So yeah there's more coming for sure. That is unbelievable. We are uh approaching we have a just a couple of minutes left uh I I I just suddenly feel so inadequate your energy is is through the roof I think it's wonderful though and if you know does your book have a website or how do people because maybe they can write to you with possible updates. Maybe you can have a page where like suggest your updates here and keep a document of what people are suggesting at as you edit. But anyway where can they find out about the book? Where can they get in touch with you? What you sent a few links and they are in the show notes. So I have that TikTok and your Facebook page and and your website but if they're just listening what would you like to share with us?

SPEAKER_02 53:08

Oh my gosh. So I do have a website uh schizophrenia-caregiver.com uh I do have a Facebook author page which is um sm I caregiver Facebook slash sm I caregiver um and honestly for anybody out there who's in this situation um contact me anywhere on either I I want as many people to give me I give me comments suggestions um their story I don't care like I just to to to make sure that I'm hitting the right things and helping people in the best way that I can through the book um I I'd love to hear it all. So you know I I got I oh go ahead no just I mean I got an email as I said I think from someone from Canada the other day no idea who this person is sent me this long email saying we absolutely need this in Canada and now I'm speaking to a Canadian broadcasting network reporter about you know potentially getting coverage in Canada maybe so uh yeah I want to hear from everybody on any any of the platforms.

SPEAKER_03 54:20

Awesome we have a number of listeners in Canada and I know a woman uh Susan Inman who wrote a book called After Her Brain Broke about her daughter's schizophrenia and she's an amazing resource I can kind of connect you with her our friends in Canada yeah that would be maybe you can even get an advance to make a Canadian version and so you can afford to eat that would be great a what a what I know I know I would like to make one last point.

SPEAKER_01 54:52

I think we're probably getting out of time here but um one thing I really liked in your book a lot that you said that I don't think a lot of people always dare to say I I have thought it many times when I'm talking to people around the country and giving advice and I'm not sure everyone can do it but you said it in your book and it is if you live in a really lousy state in terms of their mental health system, consider moving. You know I was just talking to someone from Louisiana uh last week or so and everything there is just so substandard compared to what we have here in Minnesota where we complain about our mental health system. But you said that could you talk a little bit about that?

SPEAKER_02 55:37

Oh gosh you know it's criminal how bad healthcare is in some of our states and how few resources there are on every level I mean just the basics doctors, hospitals, psychiatric hospitals all the way to the more advanced in terms of of you know housing and homelessness and things like that or how the police are and you know Mimi I was just listening to one of your podcasts the other day and you're talking about how you know you interacted with police and you're in California right and I don't know if that interaction would happen at the time when you're in California but you know these states are not equal and sometimes that chasm is so enormous that and I mean I'm in Virginia and ours is not great. And then I thought about moving my only restriction right now is my parents are just down the road and they're getting older and I want to be there for them and and but I do think about gosh what would be the best state to live in and and unfortunately here's the problem one state might be phenomenal as it relates to psychiatric hospitals and miserable as it relates to the police right like you just don't and so so how do you make that decision in terms of your own situation but I but I do think knowledge is power right going back to my Lorax slide right yeah absolutely and um since if you've been listening for a while you know and and I mentioned at the beginning of the podcast that uh my son who I call Ben is currently in a pretrial low security jail situation.

SPEAKER_03 57:23

But I I will end it with a little bit of you know we hang on to the hope and the joy as we can get it. That's one thing we've all learned. And so I sent this to Mindy and Mimi who are my friends as well as my co-hosts and we uh I'm able to email my son and because he hasn't had a drop of pot in six months and because he has been stable on his medication it's an every four week injection I preferred clausuril, that's no secret, but you know what it's oh it's okay you know without having marijuana in his system even some of his negative symptoms are eased. And he wrote me an email that was so loving and just thanking me for visiting and how it's the like the highlight of his week and it means so much to him that I care so much about him. And I'm at we're actually in a place where I am enjoying speaking to him because he seems interested. And you know if you have a loved one with schizophrenia it's all about them all about them. What are you doing to me? What are you doing to me? And I was mentioning a problem I'm having discipline wise with a grandchild and he's like oh wow mom tell me more about that that doesn't sound good like he was so sympathetic. I'm like wow so it's a good mo I mean it's a good moment in a terrible situation that I can see that with sobriety he's still in there. I mean that's the title of my book Ben Behind his voices he's still in there he's still in there. So it was a it was a light in a tough situation and if if you're having trouble recognizing your loved one because the illness is the first thing you see know that with treatment and with time and with a little bit of luck and love you'll get to see them at least partially.

SPEAKER_01 59:33

Yeah there's moments there's moments when you're like ah there you are this very in this book the there's a beautiful letter that Ben wrote Ben Randy's son who she calls Ben it's in this book. And I thought you were going to actually share with us some excerpts from what you got from your son um recently Randy but hopefully you will at some point because he's quite a writer and he wrote another beautiful letter from jail to Randy that she shared with me.

SPEAKER_03 1:00:05

Yeah I didn't have it in front of me but I kind of gave the gist of it. But um yeah he he he is and so armed with the kind of things in this book schizophrenia and related disorders a handbook for caregivers it is an emotional handbook as well I would say and thank you so much so much to Nicole Drepo Gillen for all your hard work and being here tonight and being an amazing guest. Thank you for joining us. Thank you so much.

SPEAKER_02 1:00:35

Thank you for all that you guys do and thank you for having me.

SPEAKER_03 1:00:38

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 dot com, MindyGryling dot com or randyk.com