Loving Someone with Mental Illness: Skills, Hope, and Strength (Ep. 113)

Actionable strategies for these family members and friends who give so much but whose needs and sacrifices are often unappreciated. Written by clinical psychologist Dr. Michelle Sherman and her mother, DeAnne Sherman, an advocate and educator, the book provides:

• Tools to cope with difficult emotions
• Strategies to empower loved ones, including how to navigate the mental health system
• Communication and limit-setting skills
• Approaches to supporting loved ones who have experienced trauma or have PTSD
• Ways to manage common challenges, such as alcohol or drug misuse, and when a loved one declines professional help
• Strategies to support children
• Skills to build personal resilience and strengthen relationships

Links:

I Am Not Alone book:

https://www.seedsofhopebooks.com/i-m-not-alone

Loving Someone with Mental Illness book:

https://www.seedsofhopebooks.com/loving-someone-with-a-mental-illness-or-history-of-trauma

Website for Michelle and DeAnne (has free resources):

https://www.seedsofhopebooks.com/

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

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

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

Transcript

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SPEAKER_01 0:00

It's a four-step process on how to respond to triggering situations in an intentional way rather than a reactionary way. You're having an argument over perhaps taking medication, anything that kind of gets you riled up. You and your loved one just aren't communicating. And so there are four pieces: catch, calm, challenge, and choose compassion.

SPEAKER_00 0:25

That's the voice of Deanne Sherman, a mental illness advocate and educator, who's with us on this episode with her daughter, clinical psychologist Dr. Michelle Sherman, to talk about when you love someone with a mental illness, what are skills that will give you hope and strength on your journey? And the four C's are just the beginning. 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 Kay. This is February 25th, and this is episode, I think, 113 of Schizophrenia Three Moms in the Trenches. Welcome. I'm Randy Kaye here with Mimi Feldman and Mindy Griling. If you're new to us, we're three moms. We've each written a book about our experiences with our sons. Each of our sons has schizophrenia, and we are turning pain to purpose by having this podcast to help other people. So welcome. Tonight's episode, we're going to be talking with a mother-daughter team who have the same purpose. And they have written a couple of books, and one is brand new about loving someone with mental illness. And they're going to give us skills, hope, and strength. But before I bring them in, let's just do uh a quick update all around. I'm I'm Randy Kay, and I will just start very, very briefly. Um if you've been listening, you know that my son, who I call Ben, for publicity purposes, has been having a really rough time in the last year or so with incarceration and substance use. And um, I will say that at the moment he's in a sober home, which is really good news. Whether or not it's gonna work out for any more than the day, I don't know, but that's that's what it is when you love somebody with substance problems as well as serious mental illness. But at the moment he's safe, he seems happy, he's refusing medication, and this is a zero-tolerance house. So I don't know what tomorrow will bring, but I've learned to live in the hope when you get it. So that's what's going on with me. Mindy.

SPEAKER_03 2:56

Jim, as you know, has been accepted to the most wonderful supportive housing in Minnesota, if not the country. And um, the only news is it's it's taking a heck of a long time to fill out all the paperwork. They told us be ready to move within two weeks, and that time has passed and they're still going along um with the paperwork. And I'm Jim is frustrated. He's anxious about moving and anxiousness translates into stress. And even though it's good stress, that is stress for someone with schizophrenia, but it's good stress for all of us. And I wouldn't trade places with you, Randy, for anything because we have been there and I know how that feels. So I'm so sorry.

SPEAKER_00 3:45

Oh, thank you. I, you know, we learn it, I've actually spoken to a lot of people in the last week who call for support and they call for advice, but I'm not qualified to give advice. I can just say this is our experience. Remember, we're not therapists, we're bringing a couple on, but well, we're bringing a therapist on and an advocate, her mom, on to, and they are going to be able to give advice. We just kind of tell it like it is. That's what we're here to do. So uh, but the uh a person I spoke to this morning had was just like, what do I do? What do I do? And I I just said, you know, find some joy. Find some find the joy. If it's a good day, enjoy the good day. You never want to dishonor a good day by not appreciating it. So that was, I think I could give that advice. Mimi, how are you and Nick doing? You're muted.

SPEAKER_04 4:38

I'm gonna say the same thing I've said for the last, I think, many times, is nothing much has changed. It's it's all boring and the same, which translates in our lives to good when it's boring. So I mean nothing's changed much one way or the other, but I am slowly working on things with him to try and get him more engaged in doing things. But um all in all, everything is on a pretty even keel right now.

SPEAKER_00 5:11

That's good, thank you. And as we've discovered, ordinary is miraculous.

SPEAKER_04 5:16

You know, I remember it throughout, you know, you know, long periods of time thinking, God, if I could just go back to being bored, you know what I mean, of nothing happening, of things just being not even worth commenting on, just for one day. So when it does come around, I I do appreciate it.

SPEAKER_03 5:37

Yeah. Boring means no stress means good for people with schizophrenia.

SPEAKER_00 5:42

Yeah, exactly. Absolutely. And by the way, we are all if you caught our episode with the mad moms and um a strong advocacy movement to get the blood test requirements changed for a med that many of us have had success with called Clauzuril. But there was good news today. Mindy, do you want to share what that is? And then we'll bring in our guests.

SPEAKER_03 6:06

Yay, yay, yay. Hoopy if we could only have uh things to rattle now, but there's celebration all over the country for people taking clozapine because the FDA that's had these barriers with required blood tests and all kinds of things that have to be done in order to take the drug in order to get your clozapine has been lifted. It is gone starting today. There will be education and people, doctors will be encouraged during the phase-in period to still, especially then, do blood tests and here and there. But the barrier of no blood tests, no pills, and some places, even with a blood test, they would get like one week's supply and then be yanked around to get another week. It's just such a clause for celebration. That is, and it shows you what a bunch of angry moms can do when they get organized.

SPEAKER_04 7:06

I said to my friend who was one of the founders of Angry Moms, I said to her today when she texted me, what are we gonna do with ourselves now? We'll come up with something. Oh, there are other things to fight for. Come up with something.

SPEAKER_00 7:19

Absolutely. So along these lines, we many people have asked us for just actionable steps. So we figured we'd bring in a couple of experts to do that. We are bringing in, and guys, you can uh you can unmute and turn your cameras on as I introduce you. Clinical psychologist Dr. Michelle Sherman wrote a book about a year ago uh called I'm not alone, and it was a guide for teenagers. If they're, oh, and there, if you're on YouTube, you see Mindy is holding it up, and it is for teens who have a parent with a serious mental illness or a history of trauma, I would say, and or a history of trauma. And Michelle is a clinical psychologist who was um this the psychologist of the year from the American Psychologist Association in 2022, which is a big deal. And here with her is her mom, Deanne Sherman. Deanne and I share a love of theater. She is a choreographer. Um, I am an actor and singer, and so we know the value of arts in many ways. She's also an advocate and uh a volunteer with NAMI, Minnesota. So you there's a new book that has just come out in January, but it's not just for teens. Although I imagine the teen guide would help us all. And here's Mindy holding it up: loving someone with a mental illness. Pardon me, loving someone with a mental illness or a history of trauma, skills, hope, and strength for your journey. And we could use all three of those. So welcome, welcome to both of you. I'm so glad you're here. So glad to have you. We have a lot of questions, and without getting personal or naming names, I'm just wondering if there is a story behind why you wrote these books.

SPEAKER_02 9:10

Yeah. So, first of all, thank you so much for the invitation. This is such an esteemed podcast, and so it is truly an honor. We've had the good privilege of knowing Mindy for a couple of years and have talked about this for a while, and so we are excited and honored. Yes, it's part of, as I think for many of us in this area, um, is a combination of professional and personal passion. For me, having uh worked with uh veterans and other uh individuals who experienced mental illness and trauma for a lot of years, the passion for families began actually in the mid-1990s. I was working in the VA hospital and there's still weird all the family members sitting in the waiting room when the veterans would go in for their you know 10-minute med checks or things like that. I'm like, there's such a commonality of need among all these people who are sitting here together in the same room, but no one is supporting or helping them. So actually, I got my very first, like tiny $3,000 grant and started developing family education programs. It started from there, and so for the past 30 years, this has been really what I've dedicated my career to to supporting families if you want to a veteran or a love life has mental illness or things here or family. Furthermore, um, both mom and I have a number of family members who experience different kinds of mental illnesses. And so our passion for this is not only an academic uh research, a clinical life, and that we are equally lifted, motivated, and driven to continue this work due to the numerous people we care about who are really struggling as well. So the kind of funny, I think hopefully sweet note is it was actually 20 years ago when I said to my mom, hey, you want to write a book? So we wrote our first three books just for teenagers in the mid-2000s, and then right before COVID, I said, Hey, do you want to write another book? So we've written our fourth and and kind of fifth ones here this past few months that's just come out. So it's been a lovely mother-daughter journey for uh 20 years.

SPEAKER_03 11:11

Wow, and I will say I have something in common with Deanne too, because I was a teacher in one of my other lives, and that is part of um your story too, Deanne. So maybe could you tell us about how being a teacher um made you aware of this need? And I will also say before she answers, um all of us who have written a book, Randy and Mimi and me, should have a mother like Deanne, because she's a co-promoter of everything Michelle does, stands in for her if she can't make it, and they can finish each other's sentences. They're just such a team. But Deanne, maybe you could also share about your education background and how that ties into your knowledge.

SPEAKER_01 11:59

Well, um, my biggest educator are certainly families with lived experience, whether they're ours or others. Um, and right up there along with them is my daughter Michelle. So she has helped me learn a great deal about mental illness. My degree is in something else, not in psychology or mental health. Um, but so she is my greatest teacher, and I have joined her with the same passion. I have learned to understand and have a great passion for people who are loving someone with a mental illness or are dealing with a history of trauma. Um, when we were writing our books as an educator, Mindy, I brought kind of the layperson approach. I was reading it as if I were reading it to help uh myself. And uh, does this need to be highlighted? Does this section need to be a call-out box? What if we have some bullet points? What if we have a story right here? Or I will sometimes say, Michelle, I'm not quite sure what you're saying here, honey. I don't understand this. And uh my other daughter, Lisa, who has read all of our work, she will sometimes say, declinicalize it. It's too clinical. So then we go back to the drawing board. But I think um I brought my background and education on how to present in a meaningful, um, hopefully respectful and easy to understand bits and pieces uh for our work. So being as a teacher, you know, Mindy, we always like to tell people things and help people understand things.

SPEAKER_00 13:29

So let's get down to some of what you've learned and some of what you can share today. Uh the first thing, we'll get to the four C's in a minute, unless I'll I think Mimi has that question. But when did you learn about anasygnosia, the the lack of insight that you're ill? When did you learn about that as a psychologist? And do you think enough people know about it?

SPEAKER_02 13:49

Oh, it's a great question. And the answer is I learned it from families, I learned it from Dani. I learned it from advocacy, I learned it from reading all of your books, I learned it from um, you know, honestly, social media and people posting and learning about it. Obviously, I've been out of grad school for a number of years, but even in talking to folks who have been recently in grad school, it's not talked about. It is not explained. People don't even know the word, they don't know the term. Mindy and I actually here in a couple months are going to give a talk for the Minnesota Psychological Association and say, hey, these are like the top 10 things you didn't learn in graduate school, and then it's a noise way of high on the list. So I know as a mental health professional who even specialized in the theory for 30 years, I didn't hear about it till probably a decade ago. So it's a little embarrassing to admit, but it is the truth. Um, and people in my circle still don't talk about it. Other mental health professionals have never heard of it, don't know what it is. But I can see clinically without identifying any of my clients, sharing it with some family members is so very helpful. Like they're not just being in denial or being stubborn or whatever else, it's like it's part of the illness. So it has been incredibly helpful to talk about amidors' work, talk about some of his skills, and give that idea of actually what it is. Um has been a game changer for understanding. And so I've had the passion, the torch psychology to continue to educate people. We actually just wrote something for the Navi Ramsey County website, a little two-pager sort of information. So I'm joining the mission to try to raise awareness.

SPEAKER_00 15:28

Okay, thank you. And and it it's just um it's very interesting because as my son entered the sober house, I surreptitiously spoke to the house manager because I'm still co-conservator of his person, and we've agreed that my son is not going to know that I'm speaking to him. But I said, Are you aware that he has schizophrenia? And he's like, Well, no, he didn't put that on the application. I'm like, Yeah, I wish he'd been honest about it, he said. And I said, just so you know, it's not about not being honest. He was completely honest. He does not believe he has this illness. It's something we have to fight all the time because my son was being honest. As far as he's concerned, he doesn't have a substance abuse problem and he doesn't have schizophrenia. He did have to admit to the substance abuse to get into the house. So whether or not he believed it, he had to put it on the application. But that's the kind of thing you fight all the time if you're not aware that anasygnosia is a medical condition common with stroke and brain illnesses where they don't know they're ill. So that, oh, he wasn't honest, was not true. He was just not aware. So anyway, um, thank you. Amimi.

SPEAKER_04 16:39

I'd like to ask about the four C's, uh, which is as laid out by you, uh, a way to respond to situations. So can you tell us about that?

SPEAKER_01 16:51

I'd I'd be happy to. That's exactly what it is. It's a four-step process on how to respond to triggering situations in an intentional way rather than a reactionary way. And so there are four steps.

SPEAKER_00 17:06

Well, can you describe what a triggering situation might be? Can you, you know, so if you love someone that has one of these illnesses, can you describe what a triggering situation is? And then that'll help us more with the story.

SPEAKER_01 17:19

You're having an argument over perhaps taking medication, or you want to go uh you set a time at four o'clock, you were going to leave. That person isn't ready at four. It's you know, 4:15, 420, they're not ready, you're really upset. Um, anything that kind of gets you riled up, you and your loved one just aren't communicating, and you find yourself getting really riled up about it. Michelle, do you want to add anything to this? Okay. And so there are four pieces: catch, calm, challenge, and choose compassion. So the first one is catch, and you catch yourself, you go, wow, I'm really sounding loud. I'm using words I don't usually use, I'm starting to perspire, I feel my heart rate come up. This is a this is a situation I need to cut off right now and stop. Even do like a hand sign in your mind that says, stop. And the second is calm. So you remove yourself from the situation and maybe do some deep breathing or some square breathing, go for a little walk. It doesn't need to be a long involved process, or it could be a couple hours if you needed it to be, but just get yourself back down to a healthy place. And then you can do number three, which is challenge. And this is tricky because you actually come to a point where you ask yourself, do I want to behave like this? Am I showing up in this situation in a way that is consistent with my core values of who I am as a person? And um, what's more important, being right or the relationship? So you kind of ask yourself those questions, and once you've dealt with that for a bit, you choose compassion. And so you go to your loved one, everyone's in hopefully in a better place, and maybe you decide to do nothing really, and that's okay. It's not that you weren't hurt, you weren't offended, but you're not going to work on it right now. Maybe you'll use some humor, maybe you'll decide to agree to disagree, but maybe you want to talk about it. And so you come with kindness in your voice, in your manner, in your face, and you give grace to yourself and to your loved one, and hopefully you can have a better conversation.

SPEAKER_03 19:38

That is really hard to do since you've read all your books. You know that all of us have failed that test at various times. And I have to say, you know, I um I have said to Jim, what the blank, you know, when he's doing some of these things, um, at least I now see that I can compliment myself on one thing. I often knew I had to take a break and take a walk and just get away from him and do something else. So I can say I failed, but I did at least that part. Um so I think this is really helpful to if you want to.

SPEAKER_04 20:16

Boy, can I relate to that too? I I when you first started talking, I thought the first thing that came to mind was one time years and years ago, coming to Nick's apartment and finding it just overrun with cockroaches. I mean, to an extent that it was it was like a horror movie. And after, you know, hours of uh supposedly he was helping me, but I was running around like a lunatic with uh spray bombs and doing this and that, then just screaming at him and screaming at him. The big culmination of screaming at him was so this is how you handle a kitchen, this is how you okay, this is it for you, no more food. And even as I said it, in fact, my mind, yeah, well, that's probably one you're gonna have to back up off of a little bit. But it was like, that was it, that's what it came to. No more food for you. You get as crazy, excuse the expression, as the situation sometimes.

SPEAKER_00 21:13

I I'm so glad you shared that because I'm sure, Michelle, you've had clients that are saying the same thing because there's two layers of problems. When and we all face just having a loved one with a serious mental illness or history of of trauma is a challenge in itself. And there's the there's the problem, and then there's our reaction to the problem. And we can't often fix the problem, but what the four C's can do is help us not make it worse by being aware if we're compounding the problem. And I've actually done this, I have three grandchildren, they're first, second, third grade. And there was one time the two littles were in nursery school and I picked them up and they were just not having it. They were not getting in the car seat, they were not you we've all been there, right? They were just not listening. And I was going to give them a timeout, which we're not supposed to do with gentle parenting. But anyway, so what? No, no, no. Oh, please. But what I what I because it's my daughter's rules to her children. But what I said was, okay, it's time for a timeout, and grandma's taking it.

SPEAKER_05 22:22

There you go.

SPEAKER_00 22:23

That's what I did. So I said, all right, so don't get in your car seat, just get in the car. I'm going to walk away. And you can see me through the window, and I'm going to come back when I'm calm. And so they saw me take a timeout. And I breathed. And I said, Do I want to add to this? What's going to happen? But without walking away, I would have gotten down that slippery slope of I want to be right. They have to listen to me. They should respect their elders, which is true. But at the moment, that wasn't going to help that. So it's similar to that. Anything you want to add more? Yeah.

SPEAKER_04 23:01

Oh, I I don't know. Oh, no, Mimi. One of the things that um that uh has been said to me, you know, a million times is, you know, separate it's the disease talking, it's not him talking. Separate the disease from the person. And it it's good advice and it's helpful. But at the same time, I would also liken it to, you know, if your child had a disease uh that caused involuntary movements or something, and they involuntarily threw an arm and it smacked you across the face. Well, you would understand why that arm went, but it still hurts. You still got smacked across the face. And see, that's the thing that I think is we as the loved ones have to develop tools for that. Tools for learning how to because it's like it does still hurt. So we can't just say, oh, it's nothing.

SPEAKER_02 23:54

Maybe I totally agree with you. And I think being able to recognize in part of the second C of calming is taking care of ourselves, like, oh, that is painful. That doesn't, what do I need? Okay. And part of why we wrote the three uh four C's this way is trying to spread out the distance between the trigger, the stimulus, and the response. Like Victor Frankel talks about our ultimate power is the ability to choose, right? Between when something happens and how we respond. And so part of what we're trying to do is spread that out so I can be intentional rather than reactive and just always yell or scream or swear or whatever else. And the other part, at the risk of sounding too much like a psychologist, which I guess I am, is that we're also infusing principles from an evidence-based psychotherapy called Act, which is acceptance and commitment therapy. And a huge part of that is helping us check in with ourselves. Am I behaving in a way consistent with my values? Is this the kind of mom, wife, grandmother that I want to be? And if not, what do I need to choose to do differently? Because we humans are habitual, we do the same thing over and over. It's like, well, I'm having more space between the stimulus and the response. And I'm gonna calm, I'm gonna check in with myself. How do I really want to approach? And then approach with compassion and kindness. So yeah, that's easier said than done. Absolutely, Mindy. Couldn't agree with you more.

SPEAKER_03 25:17

One thing I wonder, since you're I've never um, you know, I must with the psychiatrist, let me skip this out here. With a psychiatrist, um I always assume I as a family member am going to be included as long as Jim is okay with it, because it takes a team, as Dr. Leitman, Jim's doctor says, to remember all those things. What are you supposed to take? What's clean to reporting symptoms, you know, and so forth. Um but with when Jim has had a psychologist, which we've had many and always as an adult, I have never had a role. Um, and I've never been invited to have a role. I always have thought, and I've always assumed they think that too, because they don't seek me out. Um Is there a role for families when a family member is working with a psychologist? And and then considering anasygnosia, how does that work if they don't think they're sick and then they won't sign a release?

SPEAKER_02 26:20

Yeah. Oh, that's a great, challenging um question. So I will buckle in for the next three hours and um but yeah, sadly, many mental health professionals broadly are really trained in an individual sort of model. Okay. And I'm more of a couple and family psychologist, so I take more of that system sort of model, and I'm always trying to engage families. Now, there is the issue that with individual therapy, your primary person you're trying to build trust with an alliance with is the person in front of you. And so it is up to them and their decision whether or not they want someone involved. And it can be tricky in terms of what are you going to say, what are you not going to say, and all this sort of stuff. So it, you know, the ultimate and most important thing is helping the individual in front of you feel empowered. Yet for me, for both assessment and helping with treatment goals, getting someone else engaged, whoever it may be, um a teenager, a grandparent, a partner, a parent, can be invaluable. And so it's actually my norm that I try to do that, not necessarily for ongoing, you know, every week sort of thing, um because we're working on specific things, but to at least make the invitation. Now, family members may not always come, which can also be telling. Um, and it is ultimately up to the individual patient and their decision, unless, of course, there's risks of violence and suicidality and things of that nature. Um, but it's it's tricky. Now I'll tell you, I'm not the norm in this situation because it is it is tricky. And again, many people have this individual sort of model, but I really am more holistic in my conceptualization and desire to uh include other people who are certainly being very impacted and can be helpful with helping the person I am serving with moving toward their goals, improving their quality of life, helping them in their relationship. Says, what do we know? What does the surgeon general say? What does the research say? Loneliness, disconnection, shame, stigma are huge. And they often get enacted in relationships. So if we can help our individual person have more fulfilling, have more, have broader, have better connections and things with others in their lives. What a positive intervention that is. So fan, but I'd say it's not the norm.

SPEAKER_00 28:39

I I in fact, I was just gonna say be careful because now everyone in the country is gonna call you because you sound like it's an amazing therapist.

SPEAKER_03 28:47

No wonder she got the award for the best family psychologist.

SPEAKER_00 28:52

I want to speak for a moment to the people who can't get an appointment with a therapist, don't have someone like you on their team. So I actually have two two-part questions. One is uh one is uh kind of piggybacking on Mindy's question, which is do you have tips for families or for navigating around HIPAA, which is often misunderstood? So that's a tip thing. And the second thing is how, because we've talked about the four C's, CATCOM, if we're the problem, we know how to fix that. What do you tell I hope in your book and in in in your practice, I'm sure you do, about uh setting boundaries in your own home and boundaries with your relationship with your loved one that that can keep you safe and keep you sane because boundaries clear, boundaries are hard to set and hard to enforce, but I think they're important. So, you know, those are two things I'd love to hear about. The first let's talk about HIPAA first.

SPEAKER_02 30:06

Yeah, no, it's great, and I love both of those questions. Thank you. I believe the intent of these federal laws uh was to help protect um people's privacy. And so I think that there is uh the rationale for some of that does does make some sense. Uh however, um, and you know, people need to feel safe being able to confide in their providers, wherever that is. That all makes sense. However, many, many families I talk to find it an incredible burden, and many mental health professionals don't understand it either. Uh, and so the message that I give very loud and clear, certainly in our book and more generally with couples and families, is you have the right, the ability to give as much information as you want to. You can send them a letter. Um, you can do my chart, although you're loving be able to read it, so that's a little tricky in terms of the e-record. Um, you can um, you know, drop off you know, a letter sort of thing. You can call, you can leave voicemails, you have the ability. There's nothing that says you cannot give your information. Now, the mental health provider may very well not come back and say, oh, so I talked to, I know that you are someone's, you know, you're someone's mom, you're Ben's mom, and da-da-da. And I saw him yesterday, he's doing well. You know, if they don't have a release, they and outside of an emergency, of course, shouldn't do that. But A, you can give as much information as you want to. Certainly during some times of crisis, there's often a reduction of these sorts of limits, and that can be a good time to encourage your loved one to sign a release. And third, and kind of a workaround that I often encourage people to think about, is if, say, you know, Mindy is talking to um Jim's um psychiatrist and Jim hasn't signed the annual release, um, just say, Dr. X, um, I understand you can't tell me, you know, what to do in this sort of situation. So with Jim, but how do you handle this in general? Can you give me some tips for how families can cope with this sort of stuff? You know, it's a little bit of a workaround, um, but it can be a way to get some information. The final comment I'll make about that, and it's it's just the reality. I hope we can be honest on this show, it's just it's just the truth. Um not all mental health professionals are going to take the time uh to call back, to spend the time, to listen, to form relationship. And it's very sad because clearly we all share the passion that families are essential for both gathering information, helping with a treatment plan. I mean, you're the ones with them 24-7. I mean, oftentimes um the families are incredibly important. But what you hear sometimes mental health professionals say is I don't have time for them. They keep calling me, they keep bugging me. I mean, you hear pushback on that end, just to just to be honest, right? And so thinking of I coach families in ways of how you can be helpful in terms of advocating for your loved one, such as don't write a 20-page letter, they're not gonna read it, you know. How can you do the bullets? How can you give the mass information? Keep an updated list since often people go to different healthcare systems of what medications they're on. But you know, they've tried this medication in the past, it didn't work. They went to this residential treatment, blah, blah, blah. But the more you can be advocate and organized, I know some people use a binder sort of stuff to have it all together, um, but you can advocate and realize that they are probably very busy and under lots of pressures and scrutiny to see as many patients as they can in a short period of time, which is a systems problem, granted. Um, but trying to appreciate that they're they're trying to help you. And frankly, if they're not, maybe it's time to try to find a different provider. One who will work and embrace and respect and collaborate with families because families are everything and they're so needed and can be so valuable.

SPEAKER_00 33:50

Thank you, Deanne. Anything to add, Deanne, to that before we talk about boundaries? Uh no, great job, Michelle. Thank you. What a good moment.

SPEAKER_03 34:00

I I would just like to add in here, the problem is when Jim has a psychiatrist, a psychologist who does not include families, he's the only one who can switch. The family cannot switch. So you're kind of, and then uh if the psychologist doesn't want to see the family, they have first crack at your child, and they can definitely influence them to not want to include the family. So so we have nowhere to go, um, I don't think. But Jim doesn't um see any more psychologists. He saw so many. Some of them were absolutely wonderful, and he couldn't wait to get there, and they helped him. But I have to say I never quite knew what they did because I never once got invited. And and uh so if he ever needs another one, I shall be steering him to Michelle if I can.

SPEAKER_02 34:49

It's really sad because I think it's partly lack of understanding in our individual training model. Um, we need to have a more holistic, a family system sort of perspective of understanding. It's just it's like even with the child, you know, I'm not comparing food mental illness to children, but just listen to the metaphor for a second. If we have a child who goes into an inpatient psychiatric unit and then they get discharged, but nothing in the family system has changed, the likelihood of the child maintaining the gains is very, very little. It's the same thing if we're not intervening at the family level to assess, to support and things, the ability to help with the treatment plan and things like that is more limited. Now, there may be things that your loved one does not want to talk to you in front of and things like that, and fine, let them talk to their therapist about that sorts of things.

SPEAKER_00 35:33

Um I'm gonna add one thing too that that is sad and true, and families may need to know this. If your loved one has schizophrenia, they may have an alternate reality that is very true to them. And they may have created a a childhood that is not true. They may tell a therapist that you abuse them, they may tell a therapist that you are the devil, they may tell a therapist anything, and again, they may be lying or they may be telling what is their truth. So that if a therapist is listening and doesn't have a family involved, they get this skewed perception that this child has made up this theory that he's been through trauma when he hasn't, or she has been through trauma, when she hasn't really been through trauma other than this horrible illness. So that can, you know, can be an issue as well. Just when you're thinking about the family, know that don't believe everything that somebody with schizophrenia tells you, even if they pass a lie detector test, and that's theoretical, because it's true to them. You know, my son was being honest when he told the people in the sober house he doesn't have a diagnosis because to him it's true. So great, great point.

SPEAKER_02 36:53

That's awesome. That's awesome.

SPEAKER_00 36:54

Yeah. Anything about about can you tell us about setting boundaries so that we can keep our sanity?

SPEAKER_02 37:02

Oh, it's huge. Uh and again, we do have a whole actually our longest chapter in the book is all about setting boundaries because it's so hard, but it's so essential. I mean, first of all, we talk about what happens when we don't, you know, when we let them do all these sorts of things, that we grow our resentment and our frustration and we become depressed or anxious, we become less interested in wanting to help them. Um, it doesn't help our relationship. And so it's super important to be able to do that such that we can have an honest relationship and really wanting to be able to show up with you in an important and truthful way. At the same time, it's hard because we can be afraid that if I set this limit, what if they get angry? What if they leave? What if they do stop their medication? What if they call the police? What if whatever? I mean, the risk is real, and they may react in a really angry, um, attacking sort of way. And so it's it's it's risky. Um, and so I think it's important for family members to figure out what what is worth it and what's not. That whole pick your battle sort of idea of what really do I want to say this is simply not okay, and then find a way to communicate that respectfully, and as you said, Randy, to be consistent with it. Because if some days it's okay if you have marijuana in the house, some days it's not, they're gonna be like, well, what really is the boundary here? Um if if I not only think about boundaries with them, but boundaries for myself, that I need to go to my yoga class every Monday night, I need to go to my church meeting on Sunday mornings or whatever it may be. And even if I'm feeling kind of guilty for doing so, because gosh, my husband is at home on the couch and my my son is really in a bad place today, even more important that I need to do this for me so I can then come home somewhat fulfilled and lifted to be able to be present and supportive to my loved one. Um, but setting those boundaries can evoke guilt uh and be uncomfortable, but it's so important for this marathon that we're talking about rather than the short-term sprint.

SPEAKER_00 39:04

Yeah, so you know, you're talking self-care and so on. And I I will say so many of our listeners are dealing with can I make them take their meds if they live with me? And to me, that's a boundary. No, you know, no meds, no money, no meds, no bed. I mean, that worked that worked for nine years until it didn't.

SPEAKER_05 39:22

Yeah.

SPEAKER_00 39:23

Um, and boundaries are hard, but you know, it's it it I think it's an important part, and I'm glad you have a full, full chapter.

SPEAKER_02 39:31

It's incredible, it's assertiveness, right? It's all about how we do it, how we approach, you know, how we then stay consistent with those such that we're teaching them, yeah, this is the case. And if you choose not to do this, that's okay. But this is gonna be the consequence, and we're gonna follow through on this.

SPEAKER_00 39:45

Yeah. So say more about that. How do you set boundaries so it works more of the time?

SPEAKER_02 39:51

Yeah. Um tips.

SPEAKER_00 39:54

We need tips. Right.

SPEAKER_02 39:55

I yes. Part of it is realizing that it it is up to them whether or not and how they choose to respond to it. So going in saying, I'm doing this for me, I don't have control over what they do or they're not gonna do, but I'm gonna show up and set this on it because this is important to me. I've made this decision that it is not okay with me if again um don't take their medications or drink excessively and things like that while living in my house. And so a person say at a calm time, okay, not in an angry judgmental sort of way, but in a calm way. I just, you know, it is so important for us to have a continue to have a good relationship. And part of that for me involves wanting to be honest with you about what feels okay and what's not okay. And I am here, and as your as your mom in so many ways, I'm wanting to support and affirm and show you my unending love and desire to be present for you. And when we make some choices that are not okay, I need to set some limits and boundaries with that. And so I need to let you know that if you choose to do X, Y, and Z, um it's not gonna be okay for you to continue to live here. And I'll help you find a place, but if by such and so at time, if that's the choice that you're gonna make. But if you hear what I'm doing, then I'm really leaning into the word of choice, really into the relationship, and I'm leaning into I still love you and I'm gonna be here for you. Uh it's not like, you know, get out of here by tomorrow if you're not doing this. So it's, you know, as Amateur talks a lot about, it's like the most important thing is a relationship, right? We're leaning into relationship, yet simultaneously, I need to take care of myself because otherwise I'm gonna get burned out and it's not gonna be what I actually hope is helpful for you.

SPEAKER_00 41:31

One thing I want to mention. Yeah, and and then I think Deanne looks like she wants to speak as well. So maybe go ahead.

SPEAKER_01 41:38

I um you mentioned, Randy, you touched on self-care. And when you talk about boundaries, the first thing I think about is setting boundaries so that uh people who have a loved one managing a mental illness can take care of themselves. And Michelle used the word guilty. Um, I'm not, I'm not the one with the illness. I don't need to have uh that um book club meeting once a month or my uh church study group. Um, and what Michelle and I are trying to do with our books is just you know, just move the needle a few degrees and hope that our readers can be open and open up their perspective to the fact that it is essential that they take care of themselves. It's a non-negotiable, it's something they really have to do, and they can look forward to that Wednesday night dinner with a friend or um walk, you know, two times in the morning. And we all deserve um, we all deserve to have a life that is full and rich and creative and joyful as we can be, and spiritually, um, emotionally, uh physically active to whatever extent we can. And um if that happens, we're going to be better for everyone in our world, including our loved one who's managing a mental illness. And good caretaking isn't a week in the Bahamas, although we'd all love that right now. But maybe it's just five minutes to go into your bedroom and close the door, turn off the lights and breathe, do the square breathing, uh, your mantra. You might want to repeat your mantra, or cry or scream, or whatever works for you. Maybe it's a walk around some of the beautiful green spaces, Mindy, that we have here in Minnesota and get outside in nature. Maybe it's going to the theater, Randy, taking a trip to New York and watching the newest version of a play. So that self-care is just so essential and it can be a game changer. And I just want to tell all of our listeners and our readers that you deserve every lovely, wonderful thing that you can pack into your life because you are a beautiful person that deserves that. Uh, and you just go for it. Thank you.

SPEAKER_04 43:54

We're running a little short of time and uh getting down to our time. Yeah, we have five minutes. So I'd love it if one or the other you would talk a little bit about the book for teens.

SPEAKER_02 44:05

Sure, yeah, you bet. Uh thank you for the request. Um, we are equally passionate about supporting teenagers who are so often uh invisible in the family system when everyone is so focused in thinking about the individual with a mental illness, and it could be grandchildren, it could be um biological or adoptive children, um, but we know from both nature and nurture that they are at higher risk for having emotional health problems themselves. And so for literally 20 years, we've been really invested in thinking about how can we increase awareness, uh, identification, and providing early intervention. Sadly, again, this is an opinion statement, um, it's not an area that NAMI has really embraced very much. Um, we've actually tried for a number of years. There's been a daughters and son coalition and things, and it's not really taken off. It's not an angle that they're really invested in. Um, I'm actually going in two weeks to London and I go meet with someone who coordinates the CEO of an organization called Our Time that is all about um supporting children whose parents have mental illness. They do in-school things, they do family exercise workshops and things, and so perhaps might bring some of those ideas back. But we wrote this book, I'm not alone. A teen's God doing with a parent who has a mental illness or history of trauma, to help these young people feel seen, to realize that they really aren't alone, to normalize some of their feelings, and most importantly, to also offer some tools for resilience because there is some research showing that if they can learn some skills and do some um specific things, be it from diet, exercise, uh, enough sleep, limiting substance, things like that. Some recent research is showing that they actually may decrease the risk of developing and the severity of their own mental health problems. So there's great reason to be hopeful, but we're not doing a lot of that in this country with regard to early intervention. And so often these kids fall in the cracks. And so that's really the reason we wrote that in the hope to raise awareness.

unknown 46:04

Thank you.

SPEAKER_03 46:04

I have to say about both of your books, having read them, um, Deanne must have had good influence with wanting it to be in plain English with more bullets. And then you, Michelle, are talking about families that want to give input to psychologists or psychiatrists to be short and snappy and get your message across without going on and on and on. That is exactly what these books are like. So I would strongly encourage people for either one to take a look. There are workbooks too, especially for the teenagers, but also for adults. You can write in there, there's exercises to practice what the chapter is about, to think about how it applies to you. I just think there the format is anything but a textbook, but incredibly helpful.

SPEAKER_02 46:55

Thank you, Mindy. We'll pay it afterwards, okay.

SPEAKER_00 47:01

It sounds as though even anybody, let's say who's a teacher in high school who wanted to create a support group for teams, you know, that they could use this workbook as as a guide. Because what I'm I'm hearing is don't sweep it under the rug. Oh, you know, so many teams are like, well, I guess this is what parents do. Like we all live in our own homes and we think this is the norm. But having a parent with a serious mental illness or a substance abuse problem, you know, sweeping it under the rug, unexpressed trauma is the worst. So it sounds like so. We have a couple of minutes. I just want to ask if either one of you, you know, has something to share that we haven't asked you about that you'd like you'd most like people to know, and also um, and then we'll ask how we can get in touch with you and recap the names of the books.

SPEAKER_02 47:53

Awesome. Well, thank you. It has just honestly been a real privilege and delight and honor to be with all of you. And I think a huge part of, I think probably the mission of the podcast is continuing to help people feel not alone because you hear, I'm sure as do I, all the time, people feeling, oh, if only I had this podcast to listen to, or this support group, or things like that, which is frankly part of why we wrote books. But some people will never listen to a podcast, they'll never go to a support group, they'll never go to a NAMI or a first episode program. But maybe they would pick up a book. Maybe they'll listen to a podcast. And so I am hopeful that continuing to reach out to families in different ways to let people know that they truly aren't alone, that there are skills that they can learn, and which is what both of our books are is research-based skills to help people that have learned from families over 30 years of doing this work that try to put them into a format that can be digestible and learned. And so hopefully, people can take from our work the message of that they are not alone that there are skills available, and there are resources available if they want to connect again through NAMI or other organizations like this. So the last thing I will just say is it's been really fun working with my mom. And we say 99% of the time we've had a great experience. It's been super fun when we needed to take a break because we try to practice what we preach with the self-care. We do like some online shopping for clothes, or we play with my puppy, or things like that. So we try to make it a pleasant experience, but it's been a blessing and a privilege uh collaborating with her.

SPEAKER_01 49:27

Thank you, Deanne? Oh, thank you, sweetheart. I couldn't agree more. Um, and and and we we realize this. We we often talk about the blessing and the privilege that we have. We work so well together, which isn't necessarily always the case. I have one quick tip that I wish I had known when I was raising my children, and it's about communication. When your child or your loved one comes to you with a situation, a problem, three things you can do. You say, Would you like me to listen? Would you like my opinion? Or would you like my help? And when I was, when my girls were younger, I went straight to the help. Okay, what can we do about this? How can we fix it? Let's just make this okay. I I didn't know about those other two steps. Would you like me to listen? Would you like my opinion? Or would you like me to help? I think that's just a great thing to know. And thanks for letting me say that.

SPEAKER_03 50:19

I love that. I actually use that now with my granddaughter, the listening part. She just wants to talk and she likes it that grandma listens. Her mom is always rushing around to to try to help. And that's how I was too. But I'm grandma's grandmahood, um, I'm getting a second chance.

SPEAKER_01 50:39

It's amazing. It's amazing being a grandparent, isn't it, Mindy?

SPEAKER_00 50:43

Yeah. As long as you take a time out when you need it. So I I want to thank you both so much for joining us. The the teen book is called I'm Not Alone, a teen guide if your parents have a mental illness or history of trauma. And the new, and that's a fairly new book as well. It's 2024, I think. But the newest one is loving someone with mental illness or a history of trauma, skills, hope, and strength for your journey. All of them are available on Amazon. And we will put links, uh further links for information in our show notes. And hang in there, you're not alone.

SPEAKER_02 51:27

Amen. And I would just like to say there are also some other free resources available on our website. So I've created some other things during my years of work, and many of them are free.

SPEAKER_00 51:36

So Okay, say share your website if you would.

SPEAKER_02 51:39

www.seeds with an S, SeedsofHope Books with an S dot com. SeedsofHope Books.com. Just go to the resource tab, and there are all sorts of um international, national resources, things I've made, things other people have made. So in addition to our books, I'd just like to point out the free resources as well.

SPEAKER_00 51:59

Fantastic. And many of the things we've spoken about today, uh, we have episodes with Dr. Amador on them. Uh, you can listen to that. Should My Loved One Live With Us? We have an episode on that. Uh, SSDI getting help, what's going to happen when we die? We have uh we have a couple of episodes where we interviewed people whose parents have mental illness, and we have other ones coming up. So, you know, go for the free resources. Go to NAMI Family to Family, um, go to the other episodes of our podcast. You're not alone, and we're all here to help. And thank you so much for joining us. Thank you so much. It's a pleasure. 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 Miriam Heifenfeldman.com.