From Partner to Stranger - Mental Illness and Your Spouse: guest, Patrick Dylan (ep 66)

We interview the author of Safe, Wanted and Loved - (Patrick Dylan)

Winner of seven awards, including a National Indie Excellence Award and Best Indie Book Award.

"Anyone out there struggling to navigate mental illness should read this thoughtful book."

—Former U.S. Rep. Patrick J. Kennedy, founder of the Kennedy Forum

 "Pat, we need to kill the dog." A chill ran down Patrick Dylan's spine as his wife spoke—psychosis had found their family again.

When a sudden mental illness struck his wife, Patrick Dylan found himself living with an eerie stranger. Scared and unprepared, he began a desperate battle to protect her from a mysterious disease, shelter their children from her bizarre behavior, and recover the woman he loved.

Patrick Dylan joins the voices calling for an end to the stigma surrounding mental illness. He and his wife, Mia, live in Florida and have two college-age children. They hope that sharing their family's story will spread awareness of the realities of mental illness and offer support to others who are either experiencing a mental health crisis or providing care to an affected loved one.

We Ask:

1. Before you share your story, can you tell us what you most hope people learn from hearing it?
2. So - tell us about Mia and your family, “before” during, and “after”? 
3. How has her illness affected your kids?
4. We know SMI from a parental POV - what would you most like our listeners to know about what’s the same, and different, when it’s your spouse that becomes ill?
5. You used pen names for yourself and for Mia, yet were amazed at how many were inspired to share their own stories. - What is your dream in fighting stigma? -
6. What do you most worry about?
7. What are Mia’s strengths?
8. What do you wish you had known earlier?
9. What else do you want us to know?

Links:

https://www.safewantedloved.com/

Audiobook: https://www.audible.com/pd/Safe-Wanted-and-Loved-Audiobook/B0B7VLPJFY?action_code=ASSGB149080119000H&share_location=pdp

Amazon:

https://a.co/d/9uIxFta

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

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

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

Hosts:

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

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

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

Transcript

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SPEAKER_04 0:00

When we got married, I thought to myself, I'll never be alone again. There's going to be tough times in life, but I'll always have this wonderful supportive person to help me through it. And then I had this ordeal that lasted years where I was alone. I didn't have that person. And it's even worse because I know I know her so well. And we built our lives around our kids, and all we wanted was to build a loving home and a supportive place for our kids to grow up. And she would be crushed to see how her behavior and her actions were affecting our kids.

SPEAKER_00 0:33

What happens when this serious mental illness in your family happens to your spouse, your partner, your significant other? This is the episode you've been asking us for as we examine with guest Patrick Dylan, author of Safe, Wanted, and Loved, what happens in the family when your partner goes from partner to stranger. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. This is our 66th episode, and many of our listeners have written to us or contacted us on our Facebook page and saying, when are you going to talk about? We know you're all moms, you're three moms in the trenches, but can you do an episode on what it feels like from the spouse point of view when you're losing your partner, when you have to keep not only your spouse safe and wanted and loved, but to keep your children safe and wanted and loved. What's it like when your partner becomes a stranger? This is episode 66 Mental Illness in Your Spouse or Significant Other. And our guest, Patrick Dylan, is the author of Safe, Wanted, and Loved, winner of seven awards, including a national Indie Excellence Award and Best Indie book. That's a big, big deal. And former US rep Patrick Kennedy, who is such an advocate for a mental illness, says anyone out there struggling to navigate mental illness should read this thoughtful book. So if you're watching on YouTube, Patrick's right here and say hello. We're gonna thank you for having me.

SPEAKER_04 2:27

Really appreciate the invite.

SPEAKER_00 2:29

You're welcome. We're gonna grill you in a second. Who are we? We are three moms with three sons. Each of our sons has schizophrenia. We've written three books, and occasionally we do a little update. I have nothing really new to report. So, Mindy, you do though. Can you share?

SPEAKER_01 2:45

I have two news tidbits that both have to do with this podcast at the intersection of our lives with the podcast. And one is the NAMI National Convention is in Minnesota next week in Minneapolis. And I've been contacted by one of our previous guests to have dinner, and it's Joe Cochran who is with, as you remember, Clubhouse International and is heading up an effort in my county to have a clubhouse in our county. And so he and Jack Lasco, who's another international muckety muck in that group, will be joining me and a couple of others that I've invited here for dinner. So that came about because of this podcast. The second thing is we were all three of us moms contacted recently by a young filmmaker by the name of Aidan Keltner from San Diego. And he's actually in my house right now. He came from California to talk to a group of moms that I put together this afternoon. We had nine moms here in my right behind me in the couch. And then he is doing background information for a film that he's making, excuse me, on a mother caretaking her son who has uh schizophrenia. So he is now making a longer film. And he wanted, he's he met with, I connected him with some moms in in California that Mimi and Randy would know. But he also, I had said, if he ever did come to Minnesota, I would put together this group. And so we did. And they were all women I know really well. And I learned things from them with his probing questions. We all thought it was worth it because he's 21, you know, but well-wise beyond his years, and he will be doing films for a good long while. So we wanted to, we were honored to have a chance to educate him. So both because of this podcast.

SPEAKER_00 4:52

That that is wonderful. Um, I am absolutely thrilled. I have spoken to Aiden. We had a little Zoom call. So he said that. Yeah, I'll tell him if he ever comes to Connecticut. I'll get some more people to talk to.

SPEAKER_01 5:06

Okay. And I said someday when he gets his longer film done, you know, we would definitely want to have him on the show. And he said he would be delighted.

SPEAKER_00 5:15

Wonderful. And it there is so much advocacy out there. It's it's a fabulous thing. So thank you. And happy Mother's Day to all for those of you who helped your wife become a mother, and for all of us. And so um, I've sort of introduced our guest on basically a little more background. Oh, let me hold the book up. I've got post-it notes all over it. Here is the book, Safe, Wanted, and Loved by Patrick Dylan.

SPEAKER_01 5:44

Laura, okay.

SPEAKER_00 5:45

There you go. You win the post-it contest. A family memoir of mental illness, heartbreak, and hope. We have in common in our books that we both have hope in the subtitle. Um, when a sudden mental illness struck his wife, Patrick Dillon found himself living with an eerie stranger. Scared and unprepared, aren't we all? He began a desperate battle to protect her from a mysterious disease, shelter their children from her bizarre behavior, and recover the woman that he fell in love with. And so, as part of his book, he joins the voices calling for an end to the stigma surrounding mental illness. Just so you know, the end of the story, he and his wife Mia live in Florida. They have two college-age children, and they're still married, and hope that sharing the story will spread awareness. So, welcome, Patrick Dillon.

SPEAKER_04 6:40

Thank you. Thanks very much.

SPEAKER_00 6:42

So before you share your story, and we're gonna, we probably will interrupt with questions because that's what we do. But we want we we want to know. I I've actually in the intro said a lot of it, but before you share your story, can you can you tell us what you most hope people will get and learn from hearing about this?

SPEAKER_04 7:06

Yeah, I mean, we chose to share our story probably in a similar way that the three of you chose. We, you know, the stigma is so destructive, it makes a very stressful, difficult situation that much harder. And so we just, yeah, and also I think compounded by the fact that there's really no real good accurate depiction of psychosis in pop culture for the most part. I mean, there are our books and others like ours, but when you look at movies, when you when you you know read Stephen King novels or whatever, the one what you know, the person who's psychotic is usually the bad guy. And it couldn't be farther from the truth. Um, the reality of psychosis is different than that. And our hope is that you know, people will be drawn in not just for a good story about mental illness, but just a good story, and that maybe we could bring in some people that otherwise hadn't experienced psychosis so they could better understand what it's really like. And you know, it's hard to break such a strong stigma, but the only way we have a chance at doing it is if we share our stories. So that that was the reason. Look, there's a there's a number of other reasons why we chose to do it. Um, but that I think that's the primary reason.

SPEAKER_00 8:21

All right. Well, tell us your story.

SPEAKER_04 8:24

Sure. So you kind of read through the little synopsis there, but um, when my wife, uh it was actually the morning of her 39th birthday, um, she was uh, you know, we don't have any history of mental illness in either of our families, so far as we know. We had no experience with it. Uh, she was fine one day, uh, and the next uh she woke. Well, she didn't wake up, I don't think she slept, but I woke up and she had had a psychotic break sometime in the middle of the night. She was suffering acute psychosis, um, so mainly paranoid delusions, but other symptoms that unfortunately the four of us know so well. And it was um uh a huge uh shock. Uh we, you know, I had no idea this was coming. And uh we had two young kids at the time, nine and eleven. Uh and so the book is about you know how the ex how I dealt with that, that all the challenges that come along with it, many of which unfortunately you you know as well. Um, and um, you know, the the it started us down the path of six really difficult months of psychosis in and out of very, very acute illness, and then years of of suffering through these psychotic episodes, and you know, trying to figure out what was going on and and and find a treatment plan that might work, and supporting our kids through that, and and and dealing with everything else that goes along with with this kind of crisis. So, you know, the mental health, uh, mental illness support network and psychiatrists and therapists, and fighting with insurance companies, and dealing with pharmaceutical uh prescriptions and you know, everything that goes along with it, and try to capture that in a way that would be um, you know, something that um anyone would find compelling. When I was dealing with this, uh, I was trying to find any book about mental illness that offered some hope, and it was hard to find. And spoiler, ours is a very happy ending. So I wanted to, we also wanted to, you know, let people know that um, and and just uh this was not uh my wife does not suffer schizophrenia. She suffers by uh a form of bipolar. But these are uh illnesses that that can be with with the right treatment and the right support and the right work, can be can be effectively treated and managed, and you know, you can live happily ever after, uh, which at the time was almost impossible to believe when we were struggling through it.

SPEAKER_01 11:06

I loved your book, and you know, I've read many, many books about family stories, and I I'm really glad we have you on here because I haven't read one about that talked in depth about being a spouse and then also having your kids. And I was 10 when my grandmother went to the state hospital in our town, and your kids are nine and eleven. So I was really honed in on how you handled this with your kids. And you, like my family, your initial inclination was let's not tell anybody about what's going on in our family. But then you blossomed, whereas my family kept that, let's not tell anybody, you know, for the rest of my parents' life.

SPEAKER_02 11:54

Right.

SPEAKER_01 11:54

Could you tell our audience how you handled uh, you know, once you got past that momentary um glitch with your kids? Because I thought it was wonderful and open and honest and really healthy for them.

SPEAKER_04 12:13

Yeah, thank thank you for that. Yeah, I did, I am embarrassed at the beginning how I felt I was handling it so well. And then at the end I said, let's not tell anyone. The challenge when it's it's your spouse, and and given that the stigma is is prevalent and can have real repercussions on someone, it's that um, you know, I I felt like it wasn't really my decision to share that my wife was sick. It was really her decision to make, but at the time, she it was not, I mean, her brain wasn't functioning. So I couldn't communicate with her. I couldn't sit down and say, hey, do you do you want to keep this secret or do you want to share this? She, you know, she was a uh she's practicing medicine and and you know, it could have it could have real serious uh results. So that was my initial inclination, and also just because you're kind of taught you've got to keep this stuff quiet. So I was really focused on keeping it all secret and and hidden. Um my wife was very sick for a long time, and that just fell off my list of things that I was concerned about. I I just couldn't deal with everything. And when I and I mentioned this in the book, that when when people started finding out, what I realized was as a society, the stigma is very real. But when it comes to individuals, so many families, so many people are affected by mental illness that uh so once they find out, all of a sudden people are sharing their stories and they're provide, you know, and they're and they're compassionate and and they're being supportive. And you know, that just became the way that we decided as a family we were gonna approach this. And it's been really wonderful. I mean, look, these these are terrible illnesses, and and it was a real struggle, and I wouldn't wish it on anyone, but I mean, the the great thing about it is that our family has a very open communication now about our mental health. We all have therapists, we all take mental health very seriously, and that all comes out of of that period where and really just I mean, the challenge with kids that young is you don't really know what you should share and what you shouldn't share, and what what they're understanding and and what they're not. And and that's the real challenge. But I decided to approach it as if I were in their shoes, and I I would want answers. I would want to know what's going on with mom. Is she gonna get better? Um, how should we think about this? And and to not feel ashamed, because you know, the more I thought the more it sunk in, I realized that most of all, my wife doesn't want the kids to be ashamed of her. And they shouldn't be. If my wife had cancer, they wouldn't be ashamed that she was in the hospital. So it's really not any different. I mean, uh the brain is an organ when it suffers an illness, it people get sick, but that doesn't mean we should treat them any differently with any less support or compassion than we would any with in any other illness. So that really became the mantra. Um yeah, it look, it my kids are great kids, and they they we all suffered through it, I think. You know, and that becomes clear in the book. We all had our issues and we all needed help ourselves to deal with it, me being the holdout and the very last one, until I finally recognized, yeah, I guess I need some help too. Um, but yeah, it it thank you for saying that. Um, I I think I recovered pretty pretty well after a shaky start.

SPEAKER_01 16:02

My sister and I whispered and talked about it all the time. She was one year older. She was I was 10, she was 11. So kids are gonna be talking about it, worrying about it, and how I wish my parents had asked me what you asked your kids. You know, tell ask me any question and I will answer. So thank you.

SPEAKER_02 16:21

Yeah.

SPEAKER_00 16:22

Mimi, you you keep nodding your head. So I want to know what's going on in that head.

SPEAKER_03 16:27

So much, and it's interesting to put the template of it's your spouse, not your child, over that. And it's different, but it's really not that different. And you know, we all have that learning curve in the beginning where I mean, in my book, I look back at some of this stuff and like, oh my god, I mean, I was the worst character in the book. You know, it was just like I didn't know what I was doing, but I think that that's that's what most everybody goes through. I'm wondering now that you're at your happy ending, is there something that you wish you had known sooner?

SPEAKER_04 17:04

There's so much I wish I ever look there there's so much. I mean, that's a that's a long answer to a short question. Um obviously, I wish that I would have been open and honest sooner in the ordeal. It would have made it not, I mean, look, these it's never easy, but it would have made it less stressful if I wasn't trying to hide everything. And like I said, uh friends, uh, hey, would hey, I've been suffered, I've suffered psychosis too. Um, so it, you know, it was it was like the people come out of the woodwork and you realize, oh wait, I'm not we're not alone. This affects so many families. I guess the other thing is I wish that I wasn't so scared of psychosis, because that first day, that first week, I was really, it was very frightening to me.

SPEAKER_00 17:57

I had to know what was tell us, you know, because we've read the book, but so you're it from what I remember, it was sort of ramping up. Like she wasn't sleeping and she was saying weird things, and things were happening at work, and she really had some paranoia going on. She thought there was a plot and she was obsessing about details. And, you know, eventually you did psych, you know, psychiatrist roulette until you found someone who could help you. You know, we all did the medication roulette and the psychiatrist roulette, and you know, um, but it sounded, you know, I'm imagining your children nine and eleven, and then other characters in your book, your your in-laws and your siblings, and and a lot of secrecy at first. But it it was frightening what she was doing. It was no little thing. She, you know, she said, we have to kill the dog. Uh, you know, she thought the devil, there's a lot about devil worship. And so, you know, if you're listening, psychosis is different for everybody and it is terrifying. And in your happy ending, I know you had to relive that to write the book.

SPEAKER_02 19:08

Yeah.

SPEAKER_00 19:08

There's there's a scene in here that just I think you're a a little bit into it. And when you began to understand, when you took your kids aside when you were about to read them their book and said, Before I read to you, can you let's talk? Do would you like to talk about mom? And they said they would. And they're little, they're like nine and eleven. And and you explain to them that, like when you have a cold, your nose is running and it doesn't work properly. So mommy's brain is hurting, so her brain isn't working properly. And um, and then the kids start nodding. It's like she has the cold, but the cold is in her brain, she can't control it.

SPEAKER_04 19:48

Yeah, yeah.

SPEAKER_00 19:49

I thought that was brilliant.

SPEAKER_04 19:52

You know, mom that was that was a dad trying his best to to to explain something that's very difficult to explain.

SPEAKER_03 19:59

Yeah, but at least you open I wish we could just explain it to many adults in such a simple fashion, because that's what it is, and that's what so many people just don't get.

SPEAKER_04 20:11

Yeah, and again, not helped by pop culture because people are used to watching horror films and reading Stephen King novels, and and the media is sure to jump on the very small percent of people that are dangerous with psychosis, and yet really we don't hear any stories about it. It in all honesty, my wife she did become belligerent at times for sure, and that's in the book, but because she was scared, and and any and because what she was thinking, she really believed it. So, yeah, she was raised in a very religious family. The the devil was a very real thing to her, you know, growing up. And in somewhere in that in that paranoid psychosis, the devil was all of a sudden, you know, in our dog, and then couldn't could travel through people through line of sight. And you know, it's hard, it's hard to believe, you know, that it's hard to think she believed that. She's a very, very smart, intelligent person. And even she would say, I actually thought that. You know, I might I that was real to me. So when the devil, and I, you know, the devil was kind of bouncing around our house, and I just was concerned that, oh, if the devil lever bounces into me, we're gonna have some real problems here. And then, of course, didn't take too long before that happened. Well, if you actually think that your husband is possessed by the by the devil, you're going to be scared. You're going to try to run away. And there's nothing that I could say or do, or anyone could say or do to make her think that that wasn't real. So she was terrified. And she wasn't dangerous. She was really, really scared. And uh, you know, that I think one of the I think one of the things that really helped me get through it is that her behavior, her personality, her actions were so different than the person that she is, the person that I knew for over 20 years. That I'd built my life around. It was so different that I knew it was the illness that was doing this. It wasn't her. And so I really throughout the entire experience, I just kept reminding myself, this is not your wife. This is the illness. And even with the kids, guys, this is not mom. Mom is mom is not treating you like this. Mom is not acting like this. It is because she has an illness. And we have to keep that in, we have to remember that. We have to give her, you know, show her our patience and our support, like we would anyone who's suffering with some kind of disease. And um, and so that, yeah, so that um just keeping that in mind and and and and making sure that that you know she she was safe. And even if she was mad, or I mean, I think, and again, you each one of you in your book also had to deal with this, where sometimes someone who's so sick, they're best when they're not with you, right? What they need to be in a place where people trained can can can monitor them and they can be safe. And frankly, you can get a little break. And it's sad when that happens, but you know, we we had to deal with that too. So not not easy, but but you know, so long as you don't give up, you can you can get through it.

SPEAKER_01 23:25

And one thing V said was everything is, you know, there were so many similarities. And I took actually great, I shouldn't say I chuckled, but I took great pleasure in finding that you as a spouse, a man, you know, ran into a lot of the same problems that that we mothers do. But I did notice one difference, and I think it was it is a difference, and you said on page 218, I actually wrote it down because I wanted to ask you about it or to have us discuss it, you said psychiatrists will always forgive a spouse, and they wish they saw more of that. You know, when you're advocating for your loved one and you got so frustrated that you, you know, you were what in polite society, you know, might be called rude to the staff. And all of us mothers have done that, and probably every mother has done that. But I wonder how often we get told that um the psychiatrist will always forgive a mother, and we wish we saw more of that. Um, I see Mimi and Randy smiling a little bit at that. So um I guess I just want some discussion of that, maybe from all three of us. But I just I was really struck by that, and I want that to apply to mothers too, when in the thinking of psychiatrists.

SPEAKER_04 24:54

Yeah, I look, I think that particular psychiatrist, um, we got really lucky uh with that psychiatrist. He uh was someone that we were referred to and we were seeing, and it just so happened he was the head psychiatrist at our local crisis unit who actually then saw my wife when the the couple times that she had to go in. Um and he was incredible. I mean, I could text him at any time during the night and he would he would respond. Now, I don't know if he would do that for for for a mom and and her child. I I I have no idea, but but we I I there weren't I don't think there are many psychiatrists that that would do that. Um but yeah, I mean look, I'm I'm sure there's I'm sure there's there I'm sure I'm sure men are treated different than women and I mean I know it across most of the the the world.

SPEAKER_01 25:47

So I I can assume that that that's probably real so do you feel like you had any other advantages as a spouse or as a male, or maybe you have nothing to compare it with, so you wouldn't have thought of that.

SPEAKER_04 26:01

Well, I certainly know that I had advantages because we had financial resources that uh a lot of people wouldn't have. And it's not that we're wealthy, but you know, we did, I mean, I did benefit from a very supportive employer. Um, a health uh we we had a health insurance that unbeknownst to me did not cover any of this, which is a whole other topic we can talk about. And we can talk about Patrick Kennedy and his battle for parity. God bless him. But I mean, you know, we could afford to go through this and not have to declare bankruptcy. Um, I could afford to take some time off of work and advocate for my wife and my kids. That's a real privilege. And um, I I I was aware of that the whole time. I I don't frankly know how people can can get through something like this that don't have the resources. In terms of being a spouse or a husband or something, I I don't know. I I maybe this they don't see a lot of husbands that um go to battle. I I don't know the answer to that. I do think I had an advantage when I was dealing with those bills for the insurance because as a business person, I knew that an insurance company wasn't going to pay the price that they were charging me. And I knew what an insurance company was gonna pay. So I just basically called and said, I'm not paying this, I'll I'll pay you X and that's it. And they they quickly agreed. So I there were certainly advantages that I had. Um, I guess I would turn that back to you. You read the book and you have experienced a similar situation. How would you how would you how would you answer the question?

SPEAKER_01 27:47

Well, I I I also thought you were at a huge disadvantage, you know, being a spouse, because the rest of us can go home if we have a spouse and and have a partner in all this tragedy and trying to figure everything out. And when you're when it is your spouse, you are all alone. And then you also have your kids who maybe your your wife, when it in the case of a wife, was like a lot of wives, maybe doing more with the kids and knew all about what they should be doing. So I also had great empathy for you because it was your partner and you called her your best friend.

SPEAKER_04 28:23

Um Yeah, I think that that would be true, whether it's a husband or wife. That you know, when you you build your foundation of your life around someone, and you do that because you you love so much about them, you love the way they even, you know, I think you know, what one thing that has been said and before is you, and I think it was in my book maybe, but you really fall in love with a person's brain. I mean, it's kind of funny to say that, but you really do. I mean, you you fall in love with their personality and their humor and the way that they think and the way they approach things. And I mentioned this in the book. When when we got married, I thought to myself, I'll never be alone again. Like I, you know, there's going to be tough times in life, but I'll always have this wonderful supportive person to help me through it. And then I had this ordeal that lasted years where I was alone. I didn't have that person. And it's even worse because I know her so well. And we built our lives around our kids, and and I knew, you know, and all we wanted was to build a loving home and a supportive place for our kids to to grow up. And she would be crushed. I mean, going through it, I just knew she would be crushed to see how her behavior and her actions were affecting our kids. It would, it was heartbreaking to watch it. And it's not her fault, obviously, it's far from her fault, but that was really, really hard. And, you know, I'm Randy, you mentioned, you know, a call you got from someone who read your book. I have had people reach out to me who are spouses going through never had a husband, actually, but several wives. And, you know, that's one thing that we talk about, which is uh, especially with young kids like that, uh, it's just it's it's it's so hard to watch someone who you know only wants the best for your kids put them in situations and and and and do these actions that are causing them such tremendous stress. I mean, that's that was yeah, that Mindy, that was one of the hardest things about it.

SPEAKER_03 30:33

Did you ever feel that your kids were in danger?

SPEAKER_04 30:36

I know I never felt that they were in danger. No, I never did. Um, I think the well, let me let me uh adjust that. I think look, my wife at some points was on so much medication that she really wasn't supposed to be driving. In fact, one of the issues is we took her keys away and she was livid with us because you know, we wouldn't let her drive. And that really hampered her independence. But you know, she again, she was on so much medication. It was, it was really the well, it was the um, you know, the sleeping medication and the Atavan and stuff that it wasn't the antipsychotics necessarily, but until we we were able to titrate that down, we really couldn't let her drive. So I would have been concerned if she would have been driving the kids when she was on the medication. I never felt they were in danger because of her illness. I never did.

SPEAKER_03 31:24

You mentioned the thing about the dog and it I extrapolated that out like right away. I thought, uh oh, and then what happens when she thinks the kid is uh possessed? You know, I had a moment in my life with my son when this was all starting when my husband said, you know, Mimi, maybe we should like put the knives like away. And I was so appalled that he said that to me, you know, because it it addressed and questioned Nick's very sense, you know, the very who he was. You know, I just knew that Nick O'Rourke is not somebody who would you have to be afraid of with a knife, but again, it's that disease is so big and it takes over the brain, and the brain is who you are, so you lose who the person is, and it's terrifying.

SPEAKER_04 32:13

It is terrifying. And that particular situation happened about a week into the the psychotic brain, the first uh episode of psychosis, and she said that to me. Um, she I you know, she was never she was never gonna act on that. I think she was reaching out to me for help because she was really scared that you know the devil was here and you know, somehow the devil had gotten into our dog. I mean, she I guarantee you she was never gonna act on that. And as I got more comfortable with the psychosis and I got more experience dealing with it, I really was not scared of it anymore. Again, my wife, um and I don't know, I'm sure I'm sure it's different for everyone, but my wife is by nature just extremely uh patient and caring and kind and friendly, and she's not she's you know, she's not aggressive in any way. So I I I kind of at after you know weeks of this, I just felt like you know, that it's not we we don't have to be scared of her psychosis. It's more um recognizing how scared she can be with her psychosis. Right.

SPEAKER_01 33:30

I think that's really important, but on the other side of the coin, for those I have to say, I read in the paper all the time, families who say we just never, you know, they knew the person was psychotic, they knew the person was, you know, not taking their meds or whatever, but they never thought they would ever people at the supermarket or something. So families are broadsided all the time. So, and they're good families too. So I just have to get that in there. My son had illusions as well that I was the devil.

SPEAKER_04 34:03

I remember that in your book. I do.

SPEAKER_01 34:05

And I was afraid of him and we did our knives away. And he never actually ever did anything to anybody, but I don't um I don't guarantee for anybody that psychosis isn't something you have to consider those things. Yeah.

SPEAKER_04 34:19

Yeah. And there's a part in the book where that psychiatrist tells me, hey, you need to, you need to understand that this it can be way more serious than than what you think.

SPEAKER_00 34:29

I love that we're having this discussion for for so many reasons, because it's real and it's raw and it's honest. And um, without really asking, you've shared the thing that I think many spouses listening to the show need to hear. And that is and when we did our show about siblings, it was there as well, because this person that was supposed to be your best friend is, you know, you have more than one kid. I'm sure you think your kids hope your kids are going to be close as always, and they'll have kids and they'll be cousins. And so when when you when you lose the sibling to mental illness, you're usually young and it's hard to understand. And so that's a certain kind of loss. But when I have taught family to family for NAMI, usually about 80% of the people are parents, and because they're the ones that feel they have control and they can do something and they're going to learn and they're going to fix their kid. But we do get siblings and we do get spouses in the class. And there's a class near the end where we ask, okay, siblings, what do you want everybody to know about what you feel that's unique to being a sibling? And then we do the same for the partners and spouses. And that comes up again and again. I've built my life around this person. And I know every chapter in your book, you start with a brief section of your an initial love story and then go back to the to your struggles with the mental illness. And I remember one person in the NAMI family-to-family class saying, I don't know, my husband's in the hospital and I had to be Santa Claus. I had to dress up like Santa Claus so my kids could have Christmas. And if he was in the hospital with cancer, the kids could understand it and go visit. But when something's wrong with the brain, and I'm so glad that you learn to be open with your children about it, but you never know what they're feeling or how they're filling in the gaps until things are explained to them. So this is it says a lot about what you learned about being a parent, but it is lonely. And the big thing is that when they don't know they're ill and they don't want our help, and there's a couple of places in the book where you kind of land on the same runway with her and you say, Okay, let's deal with this. You know, you were trying to figure out that she thought there was some plot at work, and you were trying to help her recreate the timeline. And uh, these are some of the things we all have to learn. But I'm so, so happy for you that you're back in a good place and you all got the help you needed and you you found the medication that worked, and you went for help yourself. And the struggle goes on, I'm sure. The striving for a good marriage goes on. But if you were to talk to the other spout other spouses listening or partners, boyfriends, girlfriends, you stuck it out. And but let's talk about the burdens, and you've mentioned them, you know, the financial burdens and also just the subjective burdens, feelings of guilt, feelings of like, what would you say is unique to spouses besides like, wait a minute, I'm supposed to build my life around this person? Like you've lost your like Mindy was saying, we could go home and talk to our husbands about it or our friends, but she's your best friend and you couldn't talk to her about it until she could come around and accept it. So, what would you like everyone else to know about the what's unique to being a spouse or partner when someone gets ill?

SPEAKER_04 37:54

Well, I I think the the challenge, and I I talk about this in the book, is it's very easy to become uh caregiver and forget that you're actually a spouse. And it's difficult to um when you've been through so much trauma, it's it's difficult to let your guard down and and work on the relationship again because every relationship takes work and you have to, it's a joint effort. And if you're just sitting there watching for the first sign of psychosis and ready with the medication, ready to go, you're not really a spouse. You're you're not, you're you're just a you're just another member of her psychiatric team, and that's not healthy, it's not a healthy relationship, it's not healthy for you, it's not healthy for her. So you have to get to a point, both of you, where you accept that this is an illness, it's not going away, but it can be treated, and it's part of who your spouse is. And you need to love that part of them just like you do every other part. And if you really love the person, I mean, look, my wife is the same person that she was. Sure, we're all a little different for having gone through this, and she has to take medication and she has to watch her sleep and her stress levels and all that, then I have to support her with that. But it's worth it because we have the life that we wanted to have. We our kids are happy, they're healthy, that we we have a great relationship with our kids, they're they're productive members of society. We are, we have a very loving home and it's great. And and almost like I it's very easy, I think, sometimes to take that for granted, to take your health for granted, to take your kids for granted, to take your happiness for granted. But when you've been through hell like we have, there doesn't an hour go by that I don't think, man, are we lucky? We are so lucky that we've got this time. And I guess I what I'd say to spouses is don't give up. It's an illness. You're love, the person you love is still there. And to your point, you kind of have to play, you know, past the psychiatrist and try different medications. And, you know, we uh we ultimately went to McLean hospital. It's the only way that we solved the problem. Uh, you know, local psychiatrists couldn't do it. Again, were we privileged to have the resources to go to McLean? Of course, but you know, you just can't you just can't give up.

SPEAKER_01 40:36

Another way that I thought you were privileged, but there's lots of people that have good families that help. But I thought you had such a wealth of family members that helped, even um Mia's brother Luke, you know, that dropped everything in his life and came and lived with you for a few weeks and helped take care of the kids and the house. And I just thought uh that was very heartwarming to me to read all of that. I would have loved to have had even one of those people, you know, helping our family at that time. I did have my husband, of course. Um, but um, but I just thought that you know your extended family was incredible.

SPEAKER_04 41:16

No, yeah, no kidding. And you know, she woke up psychotic and we were actually visiting my her brother, who's an emergency room doctor. Otherwise, I would have been completely at a loss.

SPEAKER_03 41:27

And did you say she was 39?

SPEAKER_04 41:30

Yeah.

SPEAKER_03 41:31

That's old to have a first break, huh?

SPEAKER_04 41:34

Very interesting, very unusual, yeah. Yeah, that again, that's why that's why we were so blindsided. Yeah, you know, people, I think they they, I mean, obviously, this uh affects a lot of people in their teens and their early 20s and things like that. But your your the latest episode, Kat Thompson, said this can affect, you know, psychosis can affect any of us under the right conditions. And it's true. Again, another reason why we should be empathetic and supportive of people that go through this, because it can affect any of us.

SPEAKER_01 42:05

Not related to being a spouse, but um, if you know, all those frustrating parts of the mental health system that you ran into that made it so hard to get help for her, when you knew that you wanted to be involved, you should be involved, and people you were worried. The part that struck me the most of all those roadblocks was when she needed to be somewhere, but because they were voluntary programs, she could just walk out if she decided to, and then you wouldn't even know where she was or she wouldn't be getting any care. Of all those, that's to me just really rang true. Um, of all the things you ran into, what do you think was the worst? If you could change one thing about all those kind of roadblocks that we've been discussing, what would that one thing be?

SPEAKER_04 42:54

Uh, for me, when she was in the crisis center and I couldn't even visit her. I mean, I couldn't visit her until she consented to see me. That was really so hard. Just sitting in that waiting room for hours and hours and hours, knowing that she was somewhere locked away, scared. I and I, you know, as as hard as it is to be with your loved one when they're psychotic, at least you feel like you're there for them. And when you can't be, and there was no way she was going to sign a I mean, at that point, sign a release, then there's no way, right?

SPEAKER_00 43:32

So that was I'm not telling anything to the devil, you can forget that.

SPEAKER_01 43:37

I mean that part of your book made me cry because you there you were, this earnest, loving husband, and she was this wonderful person who would never deny you visiting her if she was in her right mind. But then you went there day after day and were turned away. I just thought it was so sad and very poignant.

SPEAKER_04 43:56

No, thanks. Yeah, it was it was that was really hard. I it would have changed. Like I'm, I mean, we're married, we share our lives together, and yet I can't see her. I mean, I I guess there's rules for it and they must make sense, but it was no no.

SPEAKER_03 44:15

They don't make sense. They need to change. There's no two ways about that.

SPEAKER_04 44:20

Yeah, that was that was the hardest part of that. I mean, look, dealing with insurance companies is not fun, but it's something that we all have to do, whether it's a mental illness or other illness. Insurance companies are hard. Um, but that yeah, that was that was that was really difficult.

SPEAKER_01 44:39

I think we can do a lot better in that regard.

SPEAKER_00 44:43

I I so love your openness and honesty in this discussion. I think you probably because you're talking to three moms, but I don't know if Patrick Kennedy got you to talk about your feelings the way we have, but um, I think that what you have to say is is going to help a lot of people to hear, you know, your commitment and your love and also the honesty of what your family went through. And I especially love the empathy for Mia and what it must have felt like inside her brain to believe the things that she believed were true. And I know that empathy is a huge part. And when your loved one is pushing you away, it's difficult. So thank you for sharing that. We're nearing the end of our time and it has gone very fast. And I I want to find out what the reaction to the book has been, where you are right now, and anything else you want us or spouses to know. I know that's a lot of questions, but right. So the book has been out for a while, right? A few months.

SPEAKER_04 45:53

Two years.

SPEAKER_00 45:53

Two years, really?

SPEAKER_04 45:55

Two years. Uh the printed book, the audio book came out over the summer.

SPEAKER_00 46:00

Okay.

SPEAKER_04 46:01

Um, but yeah, uh the reaction's been great. I mean, I look, I we self-published our book. There was no way any agent or publishing company was going to do this because I don't have any kind of following or anything. I'd never written a book. I didn't think I'd ever write a book. Um, it was, I had to do it. If you've read the book, you know I had to do it for my own therapy. It was incredibly helpful for me to process. I was diagnosed with PTSD. I've actually uh several people with PTSD have contacted me and they've said that the book's been helpful. So the reaction's been great. Look, the people who I think find value from it are finding it. And it's, I mean, you know, it's it's that's the reason you do this is you get that email, you get that call, and someone says thank you so much. And so that's been great. Um, we did do uh an audiobook version. Um, if anyone's listening and they want a copy, if they just go to my website, patrickdylan.com and and and send an email, I'm I'd be happy to send them a free copy of the audiobook. Super thrilled that we convinced Raul Esparza to do the narration. He's such a talented actor, and uh so we're real proud of that. So I guess I guess that's it. Thank you so much for letting me come on. I I really appreciate everything that you the three of you do in terms of advocacy. So um really I'm honored to be here and and thanks so much.

SPEAKER_00 47:23

Thank you. Just uh tell us the website and tell us the title of the book one more time.

SPEAKER_04 47:29

Uh the website is patrickdillon.com and it's safe, wanted, and loved is the name of the book.

unknown 47:34

Okay.

SPEAKER_01 47:34

And you and thank your wife too, because um, the part where she wanted you to write the book that she wanted this story to get out to help people, I thought was exemplary.

SPEAKER_04 47:46

Yeah, thanks. Yeah, it wouldn't have been finished. The book would never have been finished without her. So I'll let definitely let her know.

SPEAKER_00 47:52

Through partners, any final words to the spouses out there listening? That you keep you keep saying in your book, don't give up, but anything else to add?

SPEAKER_04 48:01

Um, there can be happy endings. It's hard to believe at times, but there can be a happy ending.

SPEAKER_00 48:08

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at Miriamfeldman.com, mindygryling.com, or randyk.com