Suzanne McCartney: A sisters advocacy to reform system failures for SMI

Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Meehanthor. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Join in, be inspired and join us in transforming the world one story at a time. Hi, I'm Tony Meehanthor. Welcome to Why Not Me, embracing autism and mental health worldwide. Joining us today is Suzanne McCartney. She's here to tell the deeply personal and powerful story of her brother's journey with serious mental illness. This journey unveils the hidden struggles, the barriers that were posed by systems like HIPAA that can delay critical care and the urgent need for compassion and reform within our prison systems. By sharing her brother's story, she wants to spark understanding and advocate for change that hopefully will inspire others to embrace conversation that opens hearts and minds to a more inclusive world. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Discovering exceptional talent for your team can be a tough journey, but not with ZipRecruiter. ZipRecruiter finds amazing candidates for you, fast. And right now, you can try it for free at ZipRecruiter.com slash work. ZipRecruiter's smart technology swiftly pinpoints top tier talent for your roles with unmatched precision. The moment you post your job, ZipRecruiter's powerful matching technology instantly connects you with highly qualified candidates. ZipRecruiter lets you connect with those top candidates ASAP you can use Invite to apply to personally reach out to your favorite candidates. So ditch the other hiring sites and let ZipRecruiter find what you're looking for, the needle in the haystack. Four out of five employers who post on ZipRecruiter get a quality candidate within the first day. Try it for free. Get this exclusive web address ZipRecruiter.com slash work. Again, that's ZipRecruiter.com slash work. ZipRecruiter the smartest way to hire. Thanks for coming on. Thank you for having me. Oh, it's my pleasure. So let's start off, if you could, tell us a little bit about your journey. Well, we'll just we'll talk about, I guess, in the beginning when my brother was diagnosed when he was in high school, live with my mother. She was kind of his protector for all these years. He lived with her after she passed. He ended up moving down near me. And he was always kind of a recluse. It was diagnosed with paranoid schizophrenia. Yes, later on after he ended up, which now he's in Bridgewater State Hospital, they also said he was autistic, which I had never heard that before. Yes, I have heard that schizophrenia and autism can overlap. So where was he living at this point? So he was living in his own apartment and he was trying to live on his own without my mother and managing his own medications through a doctor who was giving him a three month shot of in Vega. Did that seem to work for him? He seemed to be doing well. I thought everything was was going pretty good over there. He didn't really want to have too much to do with me, which was typical in his life because he's quite a few years younger than me. He ended up getting a job, which I was surprised. He had a secret girlfriend and he was going to his psychiatrist appointments, though I believed that and he had tried to kill himself years before trying to keep on track here. He ended up having this girlfriend and he seemed to be kind of spiraling down and I was sending messages to his psychiatrist telling him that I didn't think things were right and that he had a girlfriend and I didn't know about this and wanted to let him know what was going on, that I didn't think things were going well. But he never could answer me because of the hippolars. He would acknowledge that he got my letter but not respond about anything. And so on March 26th of 2020, a friend of mine told me that there was some police complex where my brother was living and while I was leaving work, it was late at night, I drove by the apartment, didn't think anything of it and then I think I ended up trying to call his phone, calling the police and I found out at around midnight that night that he had killed his girlfriend that was living with him that I didn't know about. So what happened from there? They didn't want to tell me too much information. I'd found out that he had killed her, went into a psychosis, tried to put a sword through his stomach, which he succeeded. They airlifted him to Boston and then I found out what happened. That night at midnight, I had called his psychiatrist and left a message for him. I was surprised he did call me back that night and asked me what happened and I explained to him what I knew. And so we communicated a little bit through email. Later on, I had found out I was having somebody go clean up my brother's apartment. I said to them to please keep me all the paperwork. I wanted any paperwork that was in that home and everything else could be thrown out. Did you find anything there that was of any consequence? I had found some medication because that medication was sent to my brother and he was to bring it to the psychiatrist and he was supposed to give him that medication. I had found the last one that he was supposed to get three months earlier and I had reached out to the psychiatrist and said, did he get this medication? I found a prescription here that was not ever administered. So the reason I want to do this interview is because I want to spread the word that the laws have to change and people have to be aware that if someone is mentally ill and out living on their own and they don't get their medication and nobody is following them because of Hippolus in Massachusetts, that these things happen a lot, a lot more than we know. Yeah, I hear that a lot. Unfortunately, this woman who is his girlfriend, I had no awareness of this. Her family did, her mother, her brother, the church they used to belong to, everybody on the outside except for me, his closest family member, didn't know anything about what was going on. What about the doctor? Did you ever find any information about that from him? The doctor certainly knew about this girlfriend because I had mentioned he didn't answer me one way or the other because of the privacy laws and the doctor after not too long after we had originally spoke, he said that I was to talk to his attorney. He couldn't comment anymore, couldn't talk to me anymore. That was it, contact his attorney. So that is the reason why I wanted to speak out about this because my brother, who was a gentle giant when he was on his medication, when not supervised on a medication, he was either suicidal or could be, he never hurt anyone in his life, even though having deluded delusions, and my mother was a little bit nervous about him when he had his delusions, when he wasn't taking his medication, and things can go out of control if the medication is not delivered. And if somebody doesn't know about it, they can't report it because of the laws. They could not reach on to somebody. This should have been preventable. Yes, absolutely should have been preventable. So how many years did this go on? He was living in his own apartment and I believe it was 2018, I think he was living. Actually maybe 2017 he was in his condo. My mother passed away in 2018, but he was living in the condo before that because she was in a nursing home. So a couple of years in the beginning was okay, but he was thinking that because of his illness, he was thinking he was fine. He could get a job. He could act like any regular person. Joined in the church and he was working there all the time. He had a job. He was buying nice clothing and he was going out to dinners and going to his girlfriend's place on the vineyard and going over there for holidays. None of this I knew about because I was cooking for him and I always said he couldn't have a girlfriend there. He wasn't allowed to have a girlfriend there, but he never told me the truth. And more so when he wasn't taking his medication. Yeah, that's a tough thing to go through. So how old is he now? He was born in 74. So what is he, 51? And he suffers from the anosognosia. I don't think really know what happened. I mean, they told him. He's cop and just stand trial and he's been there for several years. He actually thinks that he still has the condo and he's coming home. He's going to get a job and they're going to be letting him out this year. And I don't know whether I don't think that they're telling him that. That's his belief. So he is now living at Bridgewater State Hospital and probably will be first the rest of his life. Is he on medication now? Is he anywhere near what is considered more normal for him? They finally gotten the medication, I think, under control, although it never can be under control because even when I go visit him, I'll sit across the table from him. He's talking to himself, laughing. Sometimes I'll ask him, who are you talking to? He says, I'm just talking to myself. He says he's clearly delusional still, but he thinks that he's okay. So there's no, there's no medication that's going to ever stop that ever. From what am I understanding is about having these delusions. You know, I think that a lot of these things that we see on the news that people see happen all the time. There's a reason behind these things happening, strange occurrences. I don't know if I gave you his name, if you want to look it up, you can. That's totally up to you. Do you really want to put his name out there on this podcast? Well, I mean, it's out there. This police report was on the news. It was everywhere, everywhere on the news. So when all this happened, what happened after that? Here he was involved in a homicide. How did that affect him? Did he change at all? Did he under medication get to the understanding that this had happened? Honestly, I'm not sure because we are not supposed to talk about it where he is now because he is still incompetent to stand trial and he's gone for the courts several times. He has a public defender who doesn't really necessarily want to speak to me when I call him to ask him, you know, what's going on. I mean, he's still not mentally competent to stand trial. He's not going to pass it again this year. It's a yearly process they go through to determine competency. Right, right. There's a law and I can't think of it. I was trying to look at it before I get on the phone with you and all the states have it except for Massachusetts and Connecticut, I believe, of an outpatient treatment. Yeah, AOT. Assisted outpatient treatment. I think it's called AOT maybe. That's right. And, you know, some kind of programs like this would have been something that could prevent some of these things from happening. People don't really understand about mental illness because they can't see it. People, you know, they think that people under the trees, under the bridges are people that are, you know, abombs in their drug addicts and that's not the case. They're people in our community. They're people's brothers, sons, fathers, uncles, cousins, coworkers, you know. Yeah, absolutely. So when did this all start for him? Was it during high school? Yes, he was in high school. He had tried to kill himself a couple of times. Again, as everybody else will say probably when they have the same story is that try to kill yourself. You end up at a psychiatric hospital. They keep you there for maybe 30 days. They give you a medication. Try it out. You go home. Maybe it doesn't work. Maybe the patient is throwing the pills out the window, which has happened all the time with my brother. The next thing you know, he tries to hang himself, but the rope breaks. They send him back to the hospital again. Then sometimes, you know, he's again not taking his medication. And that's why we ended up going with this three month thing. I think that was going to be the cure sort of. But I didn't necessarily want that to happen because I felt three months was too long of a time to have that medication. With all that happening. Did he wind up graduating from high school? I think that he ended up with a GED. So when he got out of school, did his life change at all? Did it stay the same? What did it look like from that point to when all this started happening? His situation was basically was he was living with my mother who advocated for him. He wasn't really working, but he was driving. He was kind of living like a reckless. He didn't have many friends. She didn't think he was able to do anything, but she thought that anything would stress him out. I don't know whether that was the case or not, but she was always protecting him from the world. How long did that go on? Did it happen because he was forced to it because of your mother having some difficulties? Yes. He was forced into that because my mother ended up in a nursing home. She couldn't take care of him anymore. And so I had to figure out something to do with him. I ended up finding a condo. He was able to get her estate. He was able to keep the money from the sale of her house because she ended up in a nursing home. So I found him a condo. He seemed to be doing well. I mean, I would check on him in the beginning for a while, but then he didn't want me to check on him anymore. That's when I had questions about what was going on. I wasn't able to check on him. And other people told me they had seen him at the fair and he had a girlfriend. He had a girlfriend. So he was trying to act, let's say normal, right? Doing things that girls and guys do went to the beach, which he never did. Sure. But did he have any run-ins with the legal system over that period of time? No. Well, I mean, he did. When he was in and out of the hospital and it was a little bit older, he wanted to, he was a caretaker for my mother, who was sick. So it was a lot of stress from that as well. And so sometimes they would argue about things, about money or him having to take care of my mother and giving up his life for her. And so they would have arguments. She would call the police. She said that one time that she heard him in his room saying he was going to kill her. I don't know if that is necessarily true, but they had a lot of arguments. And sometimes my mother would call me, call the police, and they'd call me in the middle of the night. And they would take him because she said she was afraid of him, even though he didn't do anything to her. Verbally, he was abusive to her. So they would take him, bring him to the hospital sometimes. One time they had taken him to a hotel and then they called me. Police should have never taken him to a hotel. And then I would try to wait for a bed, a room for him to go in so that he could get admitted into a hospital. But every time he went to a hospital, he would be there for a short time and then they let him out. And the story goes with everybody. They let him out. He's back on the street. He's doing whatever. And this would be a continuous cycle. And yes, he went to the hospital many, many times. And one time he went to the hospital. My mother had given me a note when I was there one day telling me she was afraid of him. I had said to the doctors when they were getting ready to release him, I gave this note and showed it to them. I said, she's afraid of him. Can't you keep him longer? And they said, no. It just kept continuing on and on. This went on for years. When all this happened, he was 46 years old, I think. He's now 51. So that's six years now he's been there. So from the time he got out of high school until 2020, I guess, that was his life in and out of the hospitals all the time. So he did have a restraining order once on him. And I think he had to come stay with me for a while, but then she took him back. Did she ever have to worry about it getting physical at all? No. Not that I know of. No. Okay, good. That's a good thing to hear. Now you say he's in the hospital. What's his frame of mind now? Does he have lucid moments? Can you carry on good conversations with him? Or is he still delusional in any way? Yeah. Oh, yeah. He can have a conversation with him. He's very intelligent. We don't have a huge connection here now because we're such a big age difference. I used to babysit him when I was a child. He loves painting and he's very smart. And he knows what's going on in reality as far as what's going on in the world. And he watches the news and he's up to date on all that. He thinks he shouldn't be where he is because he's smarter than everybody else there. He thinks he's above everybody there. Okay. So is he there pretty much by himself or does he have any other people that may drop by to see him from time to time? Well, he basically has me. He has a daughter from years ago, which I'm not sure it is his daughter because my mother allowed him to sign papers without getting a prenup. It's a long story. There's probably some other illness in the family except for me, of course. I do have a brother in Oregon, but he doesn't want anything to do with them. I have a sister who committed suicide years ago. So he basically has me. That's it. And his daughter, who doesn't always go there. So I'm his rock. And so I'm trying to advocate for him and get his story out. And also, you know, he's in terrible conditions where he lives at Bridgewater State Hospital. It's a disturbing place he lives at. I talked with a lady here a couple of weeks ago. She never had a very good relationship with her brother. When he wound up in jail, it all changed. They became closer than they ever had been because she was his rock. Did anything like that happen to you? Yes. He calls me often and I answer the phone whenever I can talk to him. I try to remember that he has a mental illness. It's even hard for me, you know, as I can see the other people wouldn't really know. But it's hard for me to get in my brain what happened that day at 11 o'clock in the morning considering, you know, that he is like a gentle giant and wouldn't hurt a fly. We talk, he's self-centered and sometimes people with mental illness, I think, have, what do I want to say about the term, they're sort of manipulative, I guess, self-centered, you know, the whole conversation when he calls is really what I can do for him. Okay, so now you say he's been deemed incompetent to stand trial? Yes. So what's the criteria for that? I mean, you say that he can carry on a conversation. He's very intelligent. He understands what's going on in the world. What is stopping that from moving forward? I don't know what exactly they ask, but they, I guess they must ask him about reality, but they know that he questions things about people talking to him. He'll say that on the TV that the TV's talking about him or the guards where he's at are talking about him. And one of the girls that comes in to play music is trying to hit on him. These are not true. So reality checks about things, you know, and the medication, you know, and there's a lot of things that can affect the medication. It could be the heat. They have an issue with heat over there. Psychotic medications are not really probably good to be mixing with high psychotic medication with heat and lack of water. He's been dehydrated there. So that, you know, I think there's a lot of factors when you're mentally ill or even any illness that, you know, outside things affect it. Sure. That makes sense. So I think the, you know, the way you're treated or maybe people do talk about you and you hear that maybe some of it is true. Maybe it is not, you know, I mean, he has major delusions of many things, you know, in the beginning he was thinking he was the Messiah. Yeah. Okay. I've heard that story many times. Yes. Now, when he was on his medication and everything was pretty much under control, well, as much as it could be at the time, what was his demeanor there? I mean, you said he was gentle. What were some of the things that he did that surprised you? Well, he would tell me about his friend. He, I never said she was his girlfriend, but he said it was his friend and he wanted to go to the fair. And could I give him someone to go to the fair? He would watch my dogs when I first got my dogs. He'd come over and babysit and doggies sit and come over and sometimes have dinner. I had some friends over. They would come over and sit at the house and he would sit and chat with them about artwork. He loved artwork and I'd cook and he would be very appreciative. He'd come over and get food and. Now with all this happening, how did it affect you? Mental illness affects so many people. Sometimes the forgotten ones are the family. So how did it affect you and the rest of the family with what was going on? Well, it was a little bit difficult because my younger brother, he was always felt like I guess that my brother was being coddled, I guess, from my mother. At the time, years ago when my brother was young, my sister and my brother always felt like he was coddled as a child. I mean, my other brother always felt that he was just faking, which is not true, but he doesn't really want to have any, any much to do with my brother. He's in Oregon, so he doesn't even usually answer the phone. So it's made the family very separated, I guess, you know, my mother was always saying a poor mark, poor mark, poor mark. My other brother was saying, well, what about me? You know, and so they don't have a good relationship. My brother, Mark, doesn't really understand why they don't have a good relationship. Yeah, that's sad to hear. It's always tough when something like this affects the family. There's a lot of listeners here that's going to understand what you're going through. They're going to be able to relate 100% with everything that you said. Now there are some that are just learning. What would you like to tell those people that are just learning how it affects the family and what needs to be done? I think the important thing is to try to seek out as much help as you can. But I think advocacy for people that are mentally ill is important to get out into public so that others know what's happening in our society. And I think training for the police and I think training for facilities at the end, especially ones that end up in jail versus psychiatric hospitals, I think that they need to be more talked about and we need to have a lot more mental health staff. There's a lot more amongst us than we know or that we think and it's getting worse and worse every year. I would never, ever thought that this would have been me and my family. Yeah. I hear that so much from all the people that come on to my podcast. That is one common thread is they just never thought that it would happen to their family. We need more people to be involved in the mental health system and more compassion and literacy about it in schools. We need people to be taught about it. Yeah, I agree. It's kind of like autism used to be. No one ever, ever wanted to talk about it. Exactly. And for me to hear that my brother had part of his diagnosis was autism, I think I had called one of the social workers and said, autism, I've never heard that before. He had any autistic tendencies, although it doesn't surprise me because the fact that he fixates on things is an autistic kind of trait. Yeah, that's very true. I had a lady on the last part of April on my podcast, her son was diagnosed autistic I think at 12 or 13 years old. Then as time went by, he became psychotic around 17 or 18, I think. Absolutely. And when I read things, I see things in the paper or things that happen here where I am on the cape, I hear that this term autism. And then I look it up after the fact and, you know, sure enough, it's part of it. So we don't really know a lot about mental illness, I think there's more and more discoveries and there's a lot of doctors who are looking into it, maybe not in this country, but in other countries, and then trying to find out what we can do about this. Yeah, it's a worldwide issue. I've got friends of mine over in the UK, they'll send me different things that pop up in the paper or on the news to advise me on what's going on. Plus, I have a lot of people from the UK and around the world that come on the podcast and tell their stories. So this isn't just US. This is all over the world. It is happening all over the world. And it's a major problem. And to think that somebody like my brother, who had this girlfriend, was thinking everything was good, was going on vacation with his girlfriend and was over there at Christmas. And with the family celebrating, it was heartbreaking when I heard this and I had to call that girl's mom and I had to say to her, I don't even know who your daughter is. I met her once in a store when I was shopping and my brother was there and I asked him who that was and he said it was a friend. He didn't introduce me to her or anything. I had never met her once in my life. Mother was crying and telling me, and I also spoke with her brother and telling me that he had come over there for Christmas and he had gone over to the Vindian many times and he was so kind to her and it was the best thing that ever happened to her. They really liked him. And I was like so torn to have to talk to them and then, you know, and find out, they didn't even know that she was living in the house with him. So there was some mental illness, I think a little bit on her side too. That's how they found each other. But to speak to the family about it was horrendous. To even think that here is this guy and girl that are in their 50s or late 40s, whatever, living together and this happens. This tragic, tragic, tragic thing happens. You know, I mean, I was heartbroken, distraught. I cannot imagine what you went through with that. That took a tremendous amount of courage to be able to tell a mother something that is that sad. Do you stay in contact with them at all or is that connection just completely destroyed? No. I returned anything I could. That was the daughters. I spoke to the son and the brother. No, I don't have any contact with them. I wrote them a letter and apologized and for everything that happened and explained that I didn't really know much about what was going on there. And, you know, I tried to explain as best I could, you know. The newspaper's got a hold of it. You know, I was afraid that people were going to come to my house and, you know, attack me for that behavior and what happened. You know, I said to the police, you're reporting things that you don't even know about. You don't know what happened there. And hearsay in the beginning, you know, they were, it was terrible. Yeah. They probably ought to get more of the professionals to talk about it rather than just the police that don't know. Right. I think the, you know, being able to give the doctors some freedom to be able to speak out and say something like this. And I know that what happens is probably everywhere is that nothing, and I've said to my friends of mine who have a nephew, the same thing is going on in Florida and she's really concerned that something's going to happen, but she can't do anything because if she, she can't call and say, well, he might do this or he could do this or he's unraveling and there's nothing you can do. And I said, you know what, something I said to my friend, there's nothing you can do until he does something. That's, that's it. And when he does something, he's going to end up in jail and then he's going to go to court and then there's going to be the same old crap that goes over and over and over again. I understand you can't charge somebody for something they didn't do, but there needs to be prevention before that. Absolutely. I couldn't agree with you more. And people know when it's coming that, I mean, the doctors in this particular doctor that he had, I think had had some other patient did the same thing, you know, and they see it coming and can't do anything. Yes, I agree 100%. Things do need to change. Well, this has been a great conversation, great information. I really appreciate you taking the time to join us today. I appreciate you letting me speak about it. It's the first time I've spoken without crying. Usually I'm in tears crying. Unfortunately, I hear that quite often. My mother didn't want to talk about it and neither do most families. They, they, but we're not talking about it. That's why nobody knows about it. It's considered one of those things you hide in the closet. You don't talk about, you know. Yes. Unfortunately, I think you're correct there. There's a lot more stories out there to be told a lot. Well, again, it's been great having you on. Well, you're doing a great thing by, you know, putting the word out. Well, I appreciate it. And thanks again. Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why not me dot world. One last thing, spread the word about why not me. Our conversations are inspiring guests. The show you are not alone in this world.