Connected Care: Can Technology Change the Journey Through Schizophrenia? (Ep. 145)

Technology is changing the way we think about mental health care—but what does that mean for families living with schizophrenia and other serious mental illnesses?

 Can technology actually make life easier for the people in the trenches—and how can families separate the genuinely useful tools from the hype?

Nicole Gillen knows what it means to be a mom navigating the complicated world of serious mental illness. In her new book, Connected Care, she explores how technology—from apps and telehealth to AI and other digital tools—can become part of the care journey. But with so many new tools appearing every day, how do we know what is actually helpful, what is safe, and what might simply add to the overwhelm? Today, Nicole joins us to talk about the possibilities of connected care—and what families need to know before they click, download, or sign up.

Nicole Drapeau Gillen is a mother, advocate, and author who translates the fast-moving landscape of technology in serious mental illness care into guidance families and clinicians can use. When she found herself thrust into caregiving for a loved one with serious mental illness, with no direction on how to help, she turned that into a mission, writing two books and building an ongoing effort to bring families and clinicians into the conversation.

Her first book, Schizophrenia and Related Disorders: A Handbook for Caregivers, is a reference for every stage of caregiving, endorsed by Dr. E. Fuller Torrey as a must-read for SMI caregivers. Her second, Connected Care: A Practical Guide to Technology for Serious Mental Illness, maps apps, AI tools, telepsychiatry, and brain-based treatments for a field moving faster than anyone can track — work Dr. Akira Sawa, Director of the Johns Hopkins Schizophrenia Center, has said "directly addresses" a significant gap.

Links

"Connected Care: A Practical Guide to Technology for Serious Mental Illness"

"Schizophrenia and Other Related Disorders. A Handbook for Caregivers" 

Website

Thanks for liking and sharing the podcast! 

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

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

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

Transcript

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SPEAKER_02 0:00

And if they're in the hospital, you can now push it to the hospital, all that information that is otherwise the hospital saying, I don't think so. I'm not gonna talk to you, mother, right? If you don't have power of attorney or guardianship or whatever. Well, now all of a sudden they can all be synced and literally, in the click of a button, pushed over to a hospital setting. And now the hospital has all the records, all the diagnostics, all the meds.

SPEAKER_01 0:26

That's Nicole Drapeau-Gillen, author of a new book called Connected Care, and it teaches us how technology can help in the fight to help those with serious mental illness. Nicole is also our fourth mom in the trenches in this episode. Welcome to our podcast, Schizophrenia. Three Moms in the Trenches. From the place where schizophrenia and real life collide. With Miriam Feltman, Mindy Gryling, and Randy Kaye. Welcome back to Schizophrenia Three Moms in the Trenches. I hope it's welcome back. Maybe this is your first time listening. If it is, we are three moms and today four moms, and we each have children with schizophrenia. And we've taken great comfort in advocacy as well as treatment and hope. And so I'm Randy Kaye here with Miriam Feldman and Mindy Gryling. And our guest today is Nicole Drapeau-Gillen, who also knows what it means to be a mom navigating the complicated world of serious mental illness. So, first of all, welcome back, Nicole.

SPEAKER_02 1:40

Thank you so much, Randy.

SPEAKER_01 1:42

And we're here to talk about your book, but you're also here in the capacity of a fourth mom. You were here, and I was shocked to see it was two years ago, episode 83, talking about your first book. Can you just give us a brief what that book was about?

SPEAKER_02 1:59

Well, how when you say brief, is that one minute or five minutes?

SPEAKER_01 2:03

Yeah, one minute. I mean, because we did an episode on it. It was an incredibly researched compilation of resources for families.

SPEAKER_02 2:12

What I've learned is that apparently when I'm angry and bitter, it drives me to do productive things. And my daughter was super sick and I couldn't find resources. And I wrote the resource I wish I'd had when she was first, you know, spiraling into the world of schizophrenia. And it's the A to Z. I always call it sort of the kitchen table book. You're sitting at your kitchen table and you're researching the, you know, XYZ has happened. My loved ones run away. My loved one's in jail. My loved one's in the hospital. My loved one needs, like I'm I'm struggling with HIPAA, whatever it is, that you would have a resource that would give you guidance on how to think through the situation and what you needed to do to help provide better care for your loved one.

SPEAKER_01 2:56

Right. And just in case people didn't hear the episode, the name of that first book is Schizophrenia and Related Disorders, a handbook for caregivers. There you go. And you can find that on Amazon or wherever you get your books. In a moment, we'll be talking about Nicole's second book called Connected Care. And this has to do with technology for serious mental illness. And there's a lot to talk about there. But before we get to your book, uh it's been a few weeks since our last episode, after having done like three in a row. So uh we each have just a let's just check in, Mindy. I know you have something you want to share about ABLE accounts, and just check in. How are you doing?

SPEAKER_03 3:34

I'm good. Um, the what I want to share about ABLE accounts, I wish I could tack it on to the last episode, but I said several times that Jim's account from Minnesota is in Indiana. I lied. It was it's Ohio. So maybe Indiana has great ABLE accounts too, but I don't know, but I know Ohio does. So that's the first thing. Uh secondly, I would like to say I heard something from a friend who listens to our podcast. She's about halfway through them. She has a daughter with schizophrenia, and she sent me an email that said, your podcast for me is an SMI master's degree. And I just thought that was so perfect. I wanted to share it. I think that's actually a Nicole is nodding her head if any of you can't are you listening instead of looking. And we're an SMI master's degree. So I love that.

SPEAKER_01 4:34

I love that too. And I just want to say we take no credit, we don't have master's degrees or MDs. So, you know, um I I think we may be an emotional master's course. Wait a minute.

SPEAKER_00 4:46

Am I in a master's degree? Oh, okay. I'm sorry. I I did the useless master's degree on the planet. I don't know.

SPEAKER_03 4:56

I used mine for two years before I before I had kids. But um, and then uh if you want an update about Jim, he's doing really well, continues to do really well. We did go to the Lateman picnic last uh weekend or two ago.

SPEAKER_01 5:10

Leiteman being Dr. Robert Leitman, a frequent guest uh and uh clos paint expert on the show. Go ahead. Thank you for that uh context.

SPEAKER_03 5:19

And um, we had a great personal meeting with him. We went to a state park on the first day we got there. The day of the picnic, did Jim did something which I bet a lot of people's family members do. He took his evening meds in the morning. And in case you haven't done that yet, you know, all his clazepine, all his heavy duty meds are packed into the night so he can sleep. And then he doesn't take much during the day, has no clazapine until mid-afternoon. He he couldn't walk and he uh could barely talk. And once we got him back to the room, because we tried to force him out, but we couldn't do it. My husband and I were both there on each side of him. We took him back and he pretty much slept all day. So that was us and the picnic that we went all the way out there to do. But luckily, they have a small brunch for out-of-towners on Sunday, and we made that.

SPEAKER_01 6:17

Okay. Well, see, even though we are we have master's degrees, we're not perfect in managing our own children. So there you go. Thank you. Thank you for that correction and for sharing that the ups and downs. Um, Mimi, I know you're just having a kind of meh week, and we don't know why, right?

SPEAKER_00 6:36

You know, um yes, I'm I'm kind of down the existential drain pipe at the moment of just you know, we work so hard and we, you know, we're on our little, all of us on our our little um the what's the wheel? Hamster wheels. And uh and you know uh I feel like I'm doing so much and all and then sometimes I just stop and I think what am I even doing? Like, who am I even helping? What is the point of anything? So that's where I am now, is just in that funk. I'm sure I'll get out of it soon. And the nice thing was one thing anecdotally, uh you know, one of the things about being with Nick that's so nice is I can just talk and talk and talk, and he's always pleasant, and he just listens and listens, and he even tries to sometimes solve problems or say, you know, help. And I was just going on and on about, you know, well, if everybody thinks I'm such a crappy mother and I've done such a bad job, and I guess I just have failed at everything, you know, things you say in your like worst self, but not usually to people, but now I'm saying it on the podcast. But I said it to him, and then we drove along a little further, and he said, Well, I think you've done a very good job as a mother, mom. Oh, at least I got that. So that cheered me up for a minute, but anyway, yeah.

SPEAKER_01 8:07

We'll there you go. I mean, and the reason we share this before we, you know, we get to the book and the information is that you know, many people write to us and say, you know, I love your guests, I love the information, but I also love how honest you guys are about the ups and downs of loving someone with a serious mental illness. So we do like to check in. I also want to thank our latest supporters, Megan and Grant and Denise. Uh the in the show notes, if you can support the podcast, it helps us to spread the word and pay for the expenses. No pressure, I swear. Just I just want to thank um our latest. We haven't uh, you know, our list is growing and it does help us to grow the podcast. So thank you so much for your support. It means everything. And the best support you can give is just telling other people about the podcast. Uh I will just share because the listeners do know that uh at the last episode we did that my son was wandering homeless and um in a different city, I believe, a city half a mile away, uh sorry, uh uh half an hour away. And I will say in the last three or four weeks, well, suddenly he popped up in our town. He came home, and uh it we're a smallish town in Connecticut, and as the social worker for the police said, oh well now we have two homeless people in town. So my son single-handedly doubled the population of the homeless in my town, but you know, I'm making light of it, but it I've gotta say it was um uh scarier. It was more frightening having him, and it was harder to compartmentalize when I was worried he's gonna come to our house. We were locking our doors because he's in psychosis. It's four months since he's had any medication. We've been there before. As I said, the hamster wheel keeps going, right? And we were all very worried. But I will say, this is like my son's nature is is a likable nature. And in the th three or four weeks that he was wandering around our town, he did not come near my house. He did not go near his sister's house. And I saw, but there were many people who didn't know him, putting on Facebook, Oh, there's a crazy person walking down my street. When are the police gonna do anything? He's clearly got mental health problems. And I was like, my daughter and I were like, uh, we just want to say that person belongs to us and don't make fun of him. You know, it's there's so many mixed emotions. And I tried really, really hard. I called the police, I called social workers, I called mobile crisis, and sometimes got wonderful help, and other times got advice like, well, if you were a conservator, you could get him in the hospital. And I'm like, no, you can't. That is not true, mobile crisis. How do you why do you think that? Anyway, you know, it it all depends on how much experience people have in there. The the good thing is that pulling all those strings finally knitted into something, and uh my son is hospitalized again. Right now, he was finally admitted, and now we go through the process again of getting him back on meds and uh assembling a new team to help him. But of course, I'm glad he's safe. I'm glad that he went willingly with uh police eventually. He resisted and then they let him smoke a cigarette and then he got in the ambulance. So, you know, there's hope again, and we live for that. So that's where we are, Nicole. So you're the fourth mom today, as well as author, and I I know you have a daughter with serious mental illness. How are you doing? How are you and your daughter? Your how's your family doing?

unknown 11:55

Yeah.

SPEAKER_02 11:58

I knew you were gonna ask me. You told me you were gonna ask me. I'm prepared for the question, but yet I'm not. Um we're six years into it and she's on closopene, and she's always been 100% treatment compliant. This kid has never tried to cheek a med or do anything, right? She has always done what I've asked her to do. And yet, you know, years into closopene, she's at the highest level in terms of what's acceptable in her body. She still has delusions, she still hears voices, she is still tortured by what happens in her head every day. And you know, I do all this, right? I I do everything I can to because if I can't help her as much as I want, then maybe I can help other people. But it makes me sad, right? Like I get Mimi's feeling of just like the melees, right? The sort of like sometimes you were just swimming through mud, fighting our way through. And we'll keep fighting and we'll keep every day trying a little bit harder in whatever ways we can, but it's so hard. I've been a single mom for 27 years for my kids, and um I have wonderful parents who've been there for me, but at the end of the day, I shoulder the burden of all of it for them. And so it's really, really, really hard. And I try to be productive, like I I I I do a lot at the gym, so I I have an outlet, and so I'm not, you know, I'm trying to find active ways to help myself, but at the end of the day, there's very few people who really understand. You ladies do. Oh, yeah. And there are other people out there who do, but it's such a solo journey. And there's a there's a really Debbie Downer way to kick off the show.

SPEAKER_01 13:50

You know, I I can't tell you how many people write to us and say, I thought I was all alone in my feelings. So yeah, I want to thank you for I didn't even know that about I I really knew about your books, but I didn't know that much about your daughter. So I thank you for the bravery of sharing that. I mean, it's it's um it's a tough road, and we keep we keep plodding along. So with that in mind, why a second book? Why this book two years after the other one came out?

SPEAKER_02 14:20

Yeah. Um so the first book was a shock to me. You know, Randy, I'll never forget when I was writing it and I was listening to your podcasts, and you talked about the the M-O-M degree. Like this goes back to the whole master's discussion, right? Like, you know, you were on panels with people and there were the doctor and the whatever. They all had they all had titles.

SPEAKER_01 14:43

I was MRQ, mother who refused to quit. That was my sense of market.

SPEAKER_02 14:48

And and I and I felt that same sort of sense of not fraud, but like, you know, fake a team make it. Like, am I am I the right person to be doing this? And it inspired me to continue forward. And that book got published to this day. People still sorry about the cat in the background, people No, I love it. They own the condo. I'm just living here with them. But people still contact me two two and a half years later about that book, thanking me for writing it from all around the world, even though I wrote it for the US market. And so last year I was driving around and and I had spent the better part of my career in technology. I spent 35 years in technology organizations. Now it was largely on the marketing side, even though I was a CIO for a brief period, but I give technology, I lived and breathed technology. And I was irritated because I get, as I said, you know, if I get angry and bitter, then something happens. And I was irritated because I was thinking about the doctor talked about TMS, we were talking about ECT, we were talking about some of these brain kind of things, and I thought, I don't know, I don't know what I should know. I don't know what I should ask. I don't know how to think about this. I don't know, like what's the research? How do I understand it? What do I ask doctors? How do I prepare my daughter? Like all these swirl of and I got annoyed. And then as I'm driving along, as silly as it sounds, the light, the lightning bolt came out of the sky and I pulled over, and I thought, that's my second book. I need to write about technology because simultaneously, all this talk about chatbots and AI was coming out. And I am always beholden to my smartwatch, how many steps have I had today? And what how did I sleep last night? And da-da-da-da-da. And and all of a sudden I thought, I think there might be something in them their hills. Let me just spend a few minutes researching it. And a couple of days of starting to try and just conceptualize what could be in this book, and all of a sudden it was like, oh yeah, oh yeah, no, this is a book. And then I did what I did with my first book is I went on to Amazon and Barnes and Noble, and I went on Google, and I started researching, is there anything out there that talks about all the different kinds of technologies that could be used for serious mental illness? Not for the worried well, not for not for Johnny who's struggling with, you know, off-the-shelf anxiety, which can be hard, don't get me wrong. But this our world is a different kettle of fish. And there's there's a thousand apps out there for the worried well. But when it came down to our world, all of a sudden, it skinnies down to a whole lot of nothing. And and then I thought, well, what's what's being researched? What's going on in clinical trials? What's going on at the diversity level that might be applicable if not in 2026 and 2030? And as I started unpacking that, I realized, oh, there's a lot. And hence book number two was born.

SPEAKER_01 17:48

Thank you so much. And you know, we we have copies of it. I'm holding mine up here. It's called Connected Care. And there's a lot of sections here, and Mindy's holding hers up as well. Um, and and there look, there's a lot, and we can go on a million tangents. I'm gonna focus for our purposes. I mean, because there's a lot, there's AI, there's AI almost supporting people's suicidal ideation, there's digital psychiatrists. I know when uh a friend of mine was going through a difficult time, she went to AI for all the wording of how to have conversations. And so there's usefulness, but we are not gonna talk about that today. We're gonna talk about like you have uh chapter three, clinical supplement, evidence-based apps for serious mental illness. Talk a bit about AI, you talk a bit about telepsychiatry. But for the purposes of our audience, families and friends dealing with someone with serious mental illness, particularly schizophrenia, what do you most want us to know about the book? Like, what did you learn that you want to share?

SPEAKER_02 19:00

So, similar to my first book, what I want everyone to think about is the stages that our loved ones go through. From falling into psychosis, and and that's not just a one-time thing, like, oh, they fell into psychosis and and and they're treated and they're better, right? Like we know that can be a cyclical process. So there's the falling into psychosis phase. There's the we're managed and and treatment is working on some level, and and we have some level of stability phase, like a new normal kind of, yeah. Yeah. And then there's the yeah, okay, what could tomorrow look like? How can we start doing future vision and planning and and preparing and that kind of stuff? And if you sort of almost bucket it in those three phases, there's technology for all of that. And that to me was the most interesting thing. So from the psychosis phase, there are apps that are now out there, and there's digital phenotyping. Digital phenotyping is so I have my phone. And if I all day I'm using my phone, I'm texting, I'm doing things, da-da-da-da-da. Digital phenotyping kind of knows that I'm I'm attached to this thing all day long. And then around about nine o'clock, it stops moving. It literally stops, the phone stops moving because I'm getting ready to wind down and go to bed. But if over the course of the night, two o'clock in the morning, I'm up using my phone, three, four, five, well, now all of a sudden the app knows I was up, I was doing things. And that could be a warning signal. It's like, it's like the it's like a uh smoke alarm, right? The smokes, the smoke alarm senses the smoke, even though it might let's say the fire. Digital phenotyping can sense the smoke. And so there's all sorts of things like that. So say Monday through Friday, I leave my home, I go to work, I come back. And whether I'm at work for two hours or eight hours is irrelevant, it knows I go and I come back. Well, let's just say I don't leave for day one, day two, day three. That's a warning signal. There are apps that can track, Randy. You talked about, you talked about this in your book, um, with your son's change of his voice, right? And you could tell that he was potentially spiraling into psychosis because he was speaking differently. There are apps that can track literally the tenor, the speed, the sound of someone's voice.

SPEAKER_01 21:20

But who would have the app? Would it be the family member or the person with the serious mental illness?

SPEAKER_02 21:25

Well, theoretically it could be both, right? And that's where you start to get into rights management and making sure the person who has schizophrenia or SMI understands that this app is out there and it could be tracking them in the sense of their activities or their speech or whatever it might be, they'd have to really clearly understand that. So that's obviously potentially a challenge because as they're as they're potentially falling into psychosis and maybe anasygnosia is becoming a bitter part bigger part of where they're at and their understanding of their situation. And what they agreed to six months ago, all of a sudden now they don't understand, makes it very sticky. I'm not gonna lie, I'm not gonna be a Pollyanna about it and be like, oh, everything's great, right? It's a challenge because this the level of psychosis in our community challenges the preconception of I check the box that you can track me, I check the box that you can, you know, track my voice or whatever it is that somebody does when they understand versus what's happening when they're in psychosis. And so there are rights issues, 100%, that are not.

SPEAKER_01 22:37

So it, you know, it it what you it sounds like what you're trying to do with the book is make people aware of tools that are available depending on your situation. I my son would never let me talk about it. That is just not going to happen. But maybe, you know, I I'm I'm also curious about tools that are available that maybe our loved ones would fall prey to that might raise red flags. I mean, all I can think of is the the dating apps for my son. He was scammed so many times, you know. But that I don't know if that's you know, part, but you you're providing resources like how can a family determine what's actually credible and useful and what should raise a red flag?

SPEAKER_02 23:26

I would say, well, I can't say, well, it's not in my book, raise a red it raises a red flag, because you know, there's obviously gonna be stuff I've missed, but to know if it's evidence-based is the key. And I would say 98% of what you're gonna find on a Play Store, an a Google App Store, whatever, is not gonna be evidence-based. It's gonna be your off-the-shelf app. And that's fine, but it's not necessarily what our community is gonna need. But I want I want to go back to what we were just talking about segment code, because you rated an interesting concept that I wanted to mention. One of the apps, uh, organization called App for Independence, A4I, their app, super cool. There's literally like a big button in the middle of it. So let's just say Mimi's hearing voices, and Mimi's struggling with what am I at? Is there really a voice in this room? And you can press the button, and the button will tell you if there's ambient noise or if there's a voice in the room. And so you can control the process of saying to yourself, something happening or not? And and you press the button, and it says, No, just it's a fan blowing in the distance. It's not a human talking. So there are apps out there that give immediate control to the person who wants to know what might be happening in their world. Um and then I'm losing my train of thought, but but there's but there's so much out there, you know, wearables. Here's a fun one wearables. So you go to bed, and maybe you have a smartwatch on, and you have a restless night of sleep. You're up, you're tossing and turning, and it tells you you you wake up and you look at it and says, You you got whatever, no hour, no rem sleep. Great. You're exhausted the next day, fine, you'll get over it. The next night you don't sleep again. And it still tracks it. It's the data's still there. Now, night three, it happens and you still don't sleep. We four know that if our loved one goes three nights of no sleep, something's going wrong. They are likely spinning into psychosis. We know this intuitively, but wouldn't it be fantastic if that very data could be synced? So whether the caregiver gets the information, or the doctor gets the information, or the peer supporter gets the information, or the case manager gets the information, pick your pick your swim lane and says, you know what? Mindy hasn't slept in three nights. Someone should do a wellness check on her.

SPEAKER_03 25:54

You know, I I um have the same concerns that Randy has. You know, I read the book, I thought, I wonder if this isn't more for younger people, you know, rather that grew up with technology being their first language. Um, you know, Jim was a brilliant computer person who did web pages and produced videos and did all kinds of things when he was uh in high school. And now in I tried, he and I tried um downloading um one of the game apps that you have, and we got it, I got it unloaded by using the computer onto my phone, but didn't get it onto Jim's phone. So, you know, but not too many 48-year-olds are needing their mothers to help them, you know, with some of those things that they used to know how to do. So that's one question. Does this work better for younger people? But the privacy issue, I think, is huge that Randy raised. Um, we have in our family Life 360, you know, just monitoring where everybody is. And our daughter set it up. So she's in it, her husband, you know, her daughter, Roger Jem and me, and that's who's in it. And so we can use it when Jim loses his phone. We've found his phone, and we all know where people are. There was at one point, I think I talked about it on an episode long ago when Jim was actually didn't know where he was because he was having some issues. Um, but then when he first moved to his current housing, he I was wondering why he was up in the middle of the night under the bridge where all the homeless people are. And I knew that because I saw it on Life 360. And that wasn't a popular thing for Jim to know that I knew that and was concerned about that. So we had to work through that. We've had some times when he's it's been turned off. And so the question is who turned it off? But like for weeks. So I'm thinking to be this all this other monitoring, uh, I just think it would be a very hard sell with our family, with Jim. So how how do you deal with that? Or is it just do you think it works better with younger people?

SPEAKER_02 28:19

I don't know if it's gonna work better with younger people or not. Here's my reality. Here's what here's my philosophy. Technology is gonna continue to march forward. It's gonna, it's gonna more and more and more pre play a role in our world. And I thought, well, if I were out there and I didn't understand technology, I would at least want to understand it. I might not use it right away with my loved one, I might not be jumping into it, but I want to understand it because it's not going away. AI is not going away, these apps aren't going away, like all of this is gonna, and there's gonna be more research behind this. Um, because there because there can be wonderful opportunities to apply technology, as I said, across those phases, there's the psychosis phase, there's the managed phase, and then there's the future phase. And if you think about each one, if you if your loved ones now moved into the managed phase and they they know they have schizophrenia, they're taking their meds, they're going through treatment, they're doing the things, and now it's uh, hey, what are the kinds of things that might help you in this? You know, like medication reminders, or you know, apps that help you journal, or apps that help you track your mood, or apps that help you sort of understand where you're at. So you can you can start to control your world better, right? And so, so what I keenly understand in our world is what gets what what trips us up, that's not the right expression, what what what causes us anxiety is that psychosis phase where in particular our our loved one is not themselves and they're not, they're probably having a signosia, they probably are struggling with all the things. And what does that mean, particularly from a rights perspective? And that's that's that I cannot diminish that. But there are phases where there might be managed, and there are phases where they might be moving into the future, where you know, uh applying avatar therapy or or virtual reality, where uh who is it that talked about dating? Uh Mindy, did you mention dating?

SPEAKER_01 30:33

I I did. I I I mentioned it, yeah.

SPEAKER_02 30:36

Right? And dating. So, like my own daughter, she has said to me, I don't know, mom, I don't know how I could ever meet someone, I don't know what I would do, how would I talk about this? Da-da-da-da-da. And we have to role play stuff all the time. We have family situations where we role play. Well, if there was a way to role play through virtual reality, a role play, a job interview, role play dating, role-play these difficult, sticky situations where you want someone to represent that situation, but not be one of us, right? Be an independent um uh person to role play with you can really help you try to start to understand the words to say to approach that situation.

SPEAKER_03 31:22

So there's that that I could actually see. And Jim does role play occasionally with me, you know, before he makes a call where he's trying to advocate for himself. He also gets a lot of use of the type of thing that you're talking about in your book, uh, just from his phone, you know, his calendar, his re his he can set up his his alarm to get up or his prompts to go to meetings. He does use his phone really in a very good way. I I think whenever he does lose it, we need that Life 360 to find it because his whole life is in there. Um, so I really enjoyed and benefited from reading your book for exactly why you said to know what's out there, to know what's coming, to know the possibilities. Um, I just feel um that there's a lot of it that I don't know that I could get Jim to do. But there's things in here, though, that with my master's in SMI that I still don't know, didn't know, um that I think are gems in the book for people to read. And one of them I was just discussing with my husband right before this started, it was the existence of ways to save money. That chapter I thought was huge. I don't know if it's in Randy's template, but she wants to cover it. No, no, no.

SPEAKER_01 32:37

I I'm I have no agenda here other than about what sort of the highlights in the book that we won't talk about. So okay.

SPEAKER_03 32:45

Well, the phone, you know, the fact that you maybe um Nicole, you can talk about. I found it on page 165, and I've marked it for Roger and I to go over tomorrow and to discuss with Jim. Uh, lower phone costs for people with disabilities. Could you tell our audience about that?

SPEAKER_02 33:03

Yeah, I mean, so that's is there's there's so many ways to potentially save money across the board, whether it's the pharmaceutical portals, depending on the medication you're on, depending on the insurance you're on, that kind of stuff. I've mapped 60, six zero, not one six, sixty portals that are out there that pharmaceutical companies have stood up. Some are educational, some are brand specific about the particular medication, some are financial, helping you understand how to um get discounts. So instead of paying hundreds, you're paying tens of dollars for medication. Um, and some are like the Teva home ground, which is just purely educational, across the board, right? 60 portals. Then to Mindy's point, I went through and I mapped all sorts of other ways to save money. So whether it's phone service, uh um uh uh oh my gosh, I'm all of a sudden blanking on it, but there are uh you know uh uh transportation services, um food services, uh you know, internet, you have internet in there. Internet, yeah. All of which you obviously access, you access, I put the salabola on the wrong thing, you access through technology, but there's ways to get discounts on it. And so so that's the other thing is that people don't understand is if you understand the the breadth of what's out there to save money, to to um, to connect the dots, to make life a little simpler for yourself and for your loved one, that that was the other big concept I tried to communicate.

SPEAKER_01 34:38

Is is there technology to help people find care for their loved one? So many people write to me, I can't find a psychiatrist. And this probably in your for more in your first book, which is about resources, but is there is there any technology that helps you kind of cut through the weeds, if you will? So anything that comes to mind?

SPEAKER_02 34:58

A little bit. So, like, you know, Cures Foundation, uh Bethany has uh providers for who people who uh prescribe LAIs, people who prescribe clozapine. So you can do a search. She's got maps where you can potentially find people wherever you might live. So she's got some stuff. I think NAMI's got some search mechanisms on their website. Um uh SPAA does not have any searches to find providers per se. Um, and then obviously there's insurance portals, which are a big old sticky wicket, but that's a portal to log into potentially to find care. But as we all know, you log into those portals, and nine times out of ten, the prescribers that they list that are accepting new patients largely are not.

SPEAKER_01 35:42

Yeah, we know. Mimi, you're you're awfully quiet. Do you have any questions? Are you just absorbing or and you're muted, so I need to unmute.

SPEAKER_00 35:50

I am just I'm I'm listening and I'm absorbing. You know, I'm not um particularly personally that hooked into technology, and I have an aversion to it. So it's it's um it's not you know what I mean, it doesn't resonate with me as much as it would resonate with people who are really into that stuff. I've just kind of learned to do what I have to do. But as an artist and as a writer, I I I have so many issues with AI and where we're headed and the human race. And if you all would like to come down my rabbit hole with me, I could tell you all about it. But I I don't need you know what I mean. I I think that, and and I haven't been able to get Nick, like I've tried with Nick, Dr. Leitman has um suggested uh um with Nick, a big issue is his cognitive because I mean his symptoms are really pretty much under control, but it's it's just his brain is just rotting away because he doesn't use his brain the way he ought to. And um and I've tried to get him on the computer doing courses or playing games, or and and you know, it's so funny because when he was a teenager, all I you know, everything was all about keeping them off of the computer, and now he is just has no interest. No interest. And you know, um I know a guy um in LA who set up uh he used to run the place called the Painted Brain, which was like a community center for people. Have you heard of that?

SPEAKER_03 37:29

Yeah, we had an episode on that.

SPEAKER_00 37:31

Yeah, we did. It was on our show, David. Uh I I was gonna say his name, but I can't think of his last name. But it's David Israelian. David Israelian. There it is. And he has set up a whole thing all about technology and how it can help people with mental illness, and and it's fascinating. I mean, it's and it looks very encouraging. It's just something that doesn't quite fit into my life personally. That's all. Got it.

SPEAKER_02 37:59

And Mimi, look, I I honor that. And and I'll just say for my own kiddo, every day, you know, she does brain games, fine, she paints, she reads, she journals, she she does research because she writes papers every month, because she loves that sort of academic process. But fundamentally, even though she's on the computer for a a portion of her day, a big portion of her day is also off the computer, doing analog activities.

SPEAKER_00 38:29

And and I mean she's doing things. Nick Nick's sitting on a couch, you know what I mean? It's it's a different thing. His his negative symptoms are just they're the ones that we just can't seem to get jump started. And he's not unhappy and he's not tortured, and he he very rarely even says he's bored, but it's just a tragedy to watch as his mother and knows what that brain is capable of.

SPEAKER_03 38:59

Yeah, right. That's the sad part. One thing I really, you know, I'm considering uh my age, I'm more up on technology than most of my friends because I had to use technology so often uh as a legislator, and then I kept up with with it with my volunteer activities. Um, two of the things I thought were really helpful were the speaking of portals that you were talking about, Nicole, the portal for the um primary record summary and also for the advanced psychiatric directive. You know, those you turn those in currently to a lot of providers on paper, and then they get in this big thick file and are never seen again. And so uh the fact that you have portals, I think you should tell our listeners about both of those.

SPEAKER_02 39:54

Well, so primary records is really cool, and and what they do, it's it's an app that can sync with your loved ones uh uh sort of primary prescriber portal, pull all of their notes, all the meds that are prescribed, all the things you need to know. And if they're in the hospital, you can now push it to the hospital, all that information that is otherwise the hospital saying, I don't think so. I'm not gonna talk to you, mother, right? If you would not have power of attorney or guardianship or whatever. Well, now all of a sudden they can all be synced and literally in the click of a button pushed over to a hospital setting. And now the hospital has all the records, all the diagnostics, all the meds, all the everything.

SPEAKER_03 40:38

That is so cool.

SPEAKER_02 40:40

I know. That's what I'm saying. Like there's so many cool things about technology, technology.

SPEAKER_01 40:46

Even Mimi could use that, right? Yeah.

unknown 40:51

Yeah.

SPEAKER_03 40:52

Randy and I remember uh we were working with a young student um who was had a grant for doing something similar to that, Randy, uh, last year, but here it is. She's got it.

SPEAKER_01 41:04

Yeah, that's fantastic. So we only have a few minutes left, and I want to make sure that like that is a gem. What was the other gem you said, Mindy? There were two. It's primary record, and what was the other thing that the advanced psychiatric directive?

SPEAKER_03 41:18

And that one rings my bells especially because when I talk about going in the file never to be seen again, that happened to us. It was never seen again. Jim was in the hospital. Roger and I were in crisis along with Jim, of course, and we forgot we had one and nobody else knew we had one. And so we they told us they they couldn't uh talk to us. And if we had just played that card, there we would go. But we went a while before um we got through. And so this would have cut to the chase.

SPEAKER_01 41:47

Yeah. I I will say, and I don't know, this is more in the criminal justice system, but because my son has been involved in that, I signed up to get um texts and email updates if he has a court date, or if anything happens, it's it's it's called it's Vine, V-I-N-E. And again, technology helps me now. I I can find what court date is coming up and so on. Um I I'd like to ask you, say let's say a a mom or a dad, a dad, or a friend, or a spouse or sibling is listening right now and they're exhausted and overwhelmed, and just like, I don't have time to learn. This book is 200 page. I uh I can't. What is the one thing you would tell this person to where would you start? What's the one or two things that you're like, all right, if you try anything, try these. Maybe not for your loved one, because that assumes that they're in that managed phase. But you know, where should the caregiver begin? What what are the some apps you would really recommend to start?

SPEAKER_02 43:02

Oh boy. Um it's a really good question. I mean, if they're in that overwhelmed, exhausted, don't know which way to turn phase in that moment of time, technology may not be the solution because you're trying, you're you're fighting with hospitals and doctors and medication and anesygnosia, and you're fighting with demons and issues that are bigger than all of us combined. Technology is not going to help you in that moment. It really isn't. You have to get to a certain level of, okay, they are in the hospital and I'm talking to the doctor, and treatment is underway, and there's some there's some things happening. It may not be the right things, it may not be the ultimate thing, but things are happening. Okay, now I can turn and I can start to start to start to lay some groundwork for when my kiddo or loved one gets out of the hospital. I can start to think about what are these next kinds of Things that I'm going to need. So whether it's uh having those uh automated pillow reminders that can start to automate the process of treatment if they're not on LAI when they come home, so that you're not having to hound them. Have you taken your meds? What about this? What about that? Right. So you, you know, one of our challenges as caregivers, care partners, care whatever you want to call us, is that we are freaking out about what's happening with our loved ones. Have they done this? What's up with that? You know, all those kinds of things. And so we become micromanagers. And it's a way for technology to create a layer between us and our loved one to potentially be part of that micromanager so that maybe we can create a different communication uh uh paradigm. We can, we can allow technology to maybe step in a little bit. I talked about that app where you can press the button to say, am I hearing a voice? Starting to think about some of those kinds of things to enable your loved one to be part of the solution, as opposed to us saying, have you, what about this? Da-da-da-da-da. Maybe there's that in in intermediary layer where technology can start to play a role. Not where we're not gonna step back, it's not gonna happen, not at that phase, but it can be something in between us and our loved one, which gives everybody just another inch of wiggle room in the process.

SPEAKER_01 45:20

I love that. And it's like an encyclopedia of possibility for when you're at that stage. The book is called Connected Care. And I did notice in the book all of the links are blue and underlined. So does that mean if somebody gets it on Kindle that it goes straight to the link?

SPEAKER_02 45:39

Yes. The thing I hate about Kindle is it's so flippin' ugly. But you know, so this is the pretty version. This is the, oh, you want to see the pretty pictures and all that, this is your version. But if you're gonna an actionable book where you can click a click, because I have like I'm hitting like 300 links in here. So if you don't mind again sitting at your kitchen table and looking at the sort of thing that you know is underlying blue and typing that in and going to it, fantastic, because this is pretty. But if you want like the click version, Kindles, Kindles got it.

SPEAKER_03 46:11

So it goes straight to speaking of those clicks. One thing I think is important for listeners to know, at least the ones I clicked, like the games and things, were all free. Are they all free in there?

SPEAKER_02 46:22

No, I well, I think a lot of the ones that I have in the book are free. I'm sure there are some, like my daughter, she does uh lumosity, which we pay for. Um uh so some are definitely charged. Yeah.

SPEAKER_03 46:34

Yeah, Jim did Luminosity and like that, but uh he was happy to hear these were all free, the ones we looked at anyway.

SPEAKER_02 46:42

And Mimi, just so you know, I do have some analog games in the book.

SPEAKER_00 46:46

And it's not, listen, I got Nick Lumosity, he wouldn't do it. I got obsessed, I finally had to get rid of it because it was all I was doing. It's not that I'm against the computer, I just uh you know what I mean. It's just it's just a very complicated issue. I understand.

SPEAKER_02 47:06

And and look, my kiddo's negative symptoms are still like profound, so I get it.

SPEAKER_00 47:13

Yeah, I mean it's just that's a thing. And and you know, then you read all these articles about AI and how kids are not writing papers anymore and nobody's reading and nobody's writing, and and you know, I worry about the the future of humankind without that, and so all these shortcuts and all these ways that take the human out of it worry me. They just do.

SPEAKER_01 47:41

I can't no, I I I I hear that, and like Nicole said, A AI is not going anywhere, but I think the the current uh uh uh uh uh trend uh among those of us who are really aware is okay, how are we going to utilize this where it's useful and keep the human creativity and connection? Like I just did my solo show, Cracks and All, A Perfectly Imperfect Life. There's no way AI could have written that show, and I include stories about my son and dealing in the, you know, when when your fantasy of parenthood gets cracked by having a child with schizophrenia in both acts. But you know, sitting there and doing this show in front of a live audience, there's no way AI can can replicate live theater. No, there's no way AI can replicate uh two people having a conversation, you know, over. I mean, there's things it won't be able to touch, and we have to keep it corralled in the right stable or well.

SPEAKER_00 48:43

I mean, and I love my computer for research, for googling and finding information and all of that. But the thing about AI that that uh uh gives me a lot of fear is the the idea of it replacing critical thinking. Yeah, but anyway, uh that's somewhat disappeared.

SPEAKER_01 49:04

That's that's separate. And and you know, to throw out a red flag, there are people, and our loved ones could be among them, who discover listen, my eight-year-old grandson just discovered Chat GPT, and he's asking questions, and uh we want to keep an eye on if our loved ones is using uh AI or a bot as a friend or a therapist.

SPEAKER_00 49:31

Well, see, that's the thing. People of our age who grew up, and I I mean we're all somewhere in close to the same age, we grew up in a different world, and and we understand that this thing is a tool, right? But yes, but now it has a potential to be much more than that, and that's what I worry about. And I mean, I I'm telling you, I worry about the idea of my loved one hearing a noise and have asking his computer, was that a real noise or not? I mean, to me that opens up a world of potential nightmares, you know what I mean? It's just frightening to me, all of it.

SPEAKER_01 50:15

Yeah. Well, it's good. It's good that we have that perspective out there as well.

SPEAKER_00 50:18

Um I mean, that's just me, but that's my personal No, it's not just you.

SPEAKER_01 50:23

And you know, and then the world is full of stories because one thing, and my husband is currently preparing to teach an AI course on an undergraduate level in college, so we have AI textbooks all over all over the house. And um the thing is that AI, as it currently is, is built to encourage you and make you seem really super smart, even when you're not. So my husband asked it to do something and it did it wrong. And when he said you did it wrong, it went, What a good catch. Like it just you're so smart. So there are instances of people who share with an AI bot or a therapist, bot, not a real person. That's my cat meowing in the background. If you can hear him, he's annoyed. But anyway, um, saying, I feel like killing myself. And at some point the AI bot goes, Well, I have great ideas on how to do that. So, you know, again, um this book is not about AI, but it is about technology and it's about apps that we can choose and use when the time is right, if it's something that will make our lives easier but not replace human connection.

SPEAKER_02 51:33

100%. And I'll also say I am a little bit on the war path right now on chatbots. And I'm writing a little, I write, I'm I'm posting a lot of op-eds on a site called Kevin MD, and I am on the war path on chatbots. So just so just you know, like I have a whole book on technology, but I'm like, chatbots need to be reined in. And there was a whole lawsuit against Meta recently that I think is gonna bode well to starting to rein in chatbots. So point being is technology, yay, technology, boo, right? Like, and and it and there's gotta be a balance, and I totally get all of that 100%.

SPEAKER_01 52:10

Absolutely. Well, Nicole, thank you so much for joining us again. It was such a delight. The book is Connected Care, a practical guide to technology for serious mental illness, and it's a gold mine of information and ideas. Thank you for joining us. Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts and or on YouTube. And remember, you can reach us at mindygryling.com, randy k.com, or MiriamHeifenfeldman.com.