Inside Schizophrenia Podcast: Helping Caregivers Navigate Schizophrenia

Guest Bio & Inside Schizophrenia Podcast Hosts

Our guest, Scott Joffrion, is a father of a son with schizoaffective disorder.

“My personal mission is to give my loved ones the best possible recovery they can have and to help other families do the same for their loved ones. I want to make a meaningful impact in the region for awareness and education with outcome-based solutions to equip future caregivers.”

“My son is my best friend that has been through hell and back with me.”
www.nami.org

Host Rachel Star Withers, creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.

To learn more about Rachel, please visit her website, RachelStarLive.comm.

Host Gabe Howard, is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!

Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline podcast. I’m your host, Rachel Star Withers, here with my amazing co-host Gabe Howard. When a mental health crisis hits, it can catch everyone off guard, the person experiencing the crisis and those around them. For many people with schizophrenia, this crisis is the person’s first psychotic episode. As a loved one, what should you do? How do you get your family member the help they need? And then what? What happens next? How does the system work? Today we are discussing. Today we are discussing navigating schizophrenia as a caregiver.

Gabe Howard: And we have a super cool guest today. Scott Joffrion is the father of an adult son with schizoaffective disorder, who is going to share what he wishes he had known when he started his journey of navigating schizophrenia with him and his family.

Rachel Star Withers: Of course, we know that everybody’s experience is going to be different. However, even when Scott was talking, I could see so many parts of my story reflected in what he was saying. I think all of us, when we’re faced with a crisis, we kind of freak out a little bit. It’s like, what do you do? It’s hard to be prepared for the unknown.

Gabe Howard: There are just some things that I don’t know that you can completely preplan for, and I think a schizophrenia diagnosis is one of it. You can’t have the equivalent of a fire drill for a schizophrenia diagnosis. And even if we could convince people that they need to pay more attention to this, there’s still the problem of how do we train them? How do we prepare them? In reality, learning about a car accident and being in a car accident are very, very different things.

Rachel Star Withers: Right away, one thing I want to stress is that this is a learning process. Different things are going to happen and part of you just has to accept that I’m learning. I might have done this wrong this time, but next time I know a little bit more of what to expect. Something else that I want to stress is that supporting your loved one is not controlling your loved one. You are just trying to manage the situation and help where you can. There’s no way you could fix this. Loved ones, especially parental figures, they want to step in and scoop up the person and fix everything. And with schizophrenia, that that’s usually not a realistic goal.

Gabe Howard: Now, Rachel, before we get too deep in the weeds, I also want to point out to our family members and our caregivers that self-care is caring for your loved one. You want to make sure that your mental health is in a good space, that you are not overwhelmed and overreacting and lacking the care that you need. So sincerely, many of our caregivers are like, well, I can’t stop or my loved one will do X or I can’t stop or this bad thing will happen. And we just want to make sure that you understand that if you are not at your best, when those bad things are happening, that can impact the outcome. Plus, we want you to be safe as well. You’re living your life as well.

Rachel Star Withers: Some basic tips for when a crisis is starting to unfold. Do your best to stay calm. You don’t want to add to the situation. You now freaking out over the person having a psychotic episode. Now we basically just have an even bigger crisis, so do your best to stay calm and avoid overreacting. Don’t start screaming back at them. Don’t start hollering or trying to reason with them even. You cannot reason with someone who is hallucinating that what they’re seeing is not real. The same thing with the delusion. You can’t reason someone out of a delusion and you also can’t shame them. You can’t be like, oh, you’re just wasting our time or you just want attention. None of those things are going to stop a hallucination or delusion. Listen to the person. What are they saying? This, Gabe, this is where my story comes in. Because I freak out if you get too close to me. If you try and reach out and touch me, that will only escalate things with me because I’m having a very hard time grasping what’s real. I tend to lose my body parts, so in my head, my arm has crawled away. So, I’m dealing with that’s mentally what I’m dealing with. And then you reach over and you touch my arm. You can kind of see that just throws everything into a ray,

Rachel Star Withers: Please be very careful with touch. If you’re going to touch the person, I always suggest ask permission first or kind of announce what you’re doing. I’m about to touch your hand. Okay, I’m standing behind you. I’m going to step to the front. Kind of let them know what’s going on and notice how I’m speaking, very slow and clear. You want to keep the stimulation level low. So, if you have the TV on go ahead, turn the TV down or off. If you got a kid screaming in the room, say so-and-so, can you just go wait in your bedroom and we’ll come and get you in a little bit? Get the whole area calm as much as you can and give them space. Honestly, you have to decide, am I part of the reason this crisis is happening? I love my parents. My dad tends to escalate things. It’s best if he steps away when I’m in the middle of a psychotic episode. And he loves me and he just wants to help. But his ways of helping usually make things worse for me. Sometimes you have to acknowledge that you, as the loved one, as the caretaker, might need to step back.

Gabe Howard: And remember, if you don’t get it right the first time, that’s okay. Don’t beat yourself up. Just figure out what went well and what didn’t go so well. And then the next time this happens, steer into the things that go well.

Rachel Star Withers: Sometimes you’re able to de-escalate the situation right then and there, or let it kind of calm down over the next few hours. That’s great. Yes, you still need to seek medical professional help, but you don’t have to get it done right that moment. You need to kind of set up a plan of, okay, we need to talk to a psychiatrist. We need to go to a clinic. We need to talk to a therapist, a case manager. Start the process with the person when the everything is calmed down. What are our next steps? However, if the person is in immediate danger, whether themselves or other people or your situation is clearly gotten out of control, it’s time to call in for help. Now, Gabe, you actually have worked with different programs and you know quite a bit about this process.

Gabe Howard: I have done a lot of work with law enforcement and first responders because when you do call for help, they are the likely people to arrive unless you have another number or place to call that is specific. And I want to be clear, very specific to your area. The vast majority of people, when things get out of hand, they dial 911 and they say, we need help and they may not do a good job of explaining. So, let’s talk about a couple of things. First off, asking for a CIT trained officer is perfect. Just say I need a CIT trained officer. My loved one is having a mental health crisis. Use that language. You can also use language like I need a mental health first responder. I need somebody who is trained to work with people with mental health issues. And here are some other tips that are also important on that. First, if you know there are no weapons, please do not lie. This is very important. But if you have no guns in your house, if you know they’re separated from weapons, please say my loved one has a mental health crisis. They have been diagnosed with schizophrenia. There are no guns in the house. Say that immediately. The next thing is, is sort of preparing for the visit. Get rid of all the bystanders. If you have other people over, whether it’s other family members, your other children, their friends or family, you want to get rid of as many people as possible because that provides stimulus.

Gabe Howard: You want to keep the situation as calm as possible. Next, when the officers or first responders do arrive, give them as much information as you can that that matters, right? That’s what I really mean matters. You know, my loved one has been diagnosed with schizophrenia. They have been taking their medication. This is unusual for us. Or of course, my loved one has been diagnosed with schizophrenia. They’ve been off their medication for about a month. This is out of character for them. They don’t usually yell at us, etc. etc. Just give them all the information that you can quickly.

Rachel Star Withers: Now, Gabe, you said to ask for a CIT or crisis intervention training officer or something along the lines of a mental health crisis unit. I have to ask, are these first responders or are they with the police?

Gabe Howard: That is an excellent question, Rachel, and a very difficult one to answer. Depending on where you are in the country, it can be different. By and large, the vast majority are law enforcement officers, and they are in fact with the police. But there are some carve out units in different cities across America where they may be first responders. They may work with the police, but not be police. And we’re even seeing situations where a police officer and a mental health professional show up together, and they assess the situation and decide if law enforcement should go in, or if a licensed social worker should go in, or a mental health crisis counselor should go in. You’re never 100% sure what you’re going to get just because it is completely different in every state. This is where it absolutely pays to figure out what services are available in your area ahead of time, because it’ll save a lot of time during a crisis not to have to figure out who’s rolling up on you.

Rachel Star Withers: What’s scary when we talk about this, Gabe, is that is best case scenario. That is the best-case scenario is that someone calls 911 and they’re able to ask for a crisis team or a crisis trained person, and they’re like, absolutely, we’re going to send them right away. And then they’ll have first responders, law enforcement is backup. That that’s wonderful, especially if you’re like me and you live out in the country. You calling 911 might get you, Joe, the local sheriff who you went to school with, you know, so it’s going to depend on where you’re at, what’s available. And that is something that does need to be on the forefront of people’s minds. Unfortunately, we all see in the news where things escalate many times and a person is shot. I do think it’s important to think about where you’re living and prep as much as you can ahead of time.

Gabe Howard: We hope that you never have to call 911, but if you do, it will behoove you to know what to expect, to know who’s coming and to know what your weaknesses and challenges are.

Rachel Star Withers: Once you do call 911, you need to be prepared for the response. Which you’re going to have the medical emergency department response, but also law enforcement. And once they arrive, you now have no control over the situation. It is up to them what happens next. That’s why you called them. You’ve called in the professionals. So, they might make a decision that you as a loved one don’t agree with. You’re going to have to step back and let them do their thing. They’ll be the ones to decide what happens next. Keep in mind, with law enforcement being involved, they might decide to arrest the person. They might decide that they’re going to have to take the person to jail. This could be very, very scary. And this is also why it’s important for you to stay calm and kind of let those who are helping them know as much as possible. Being clear if they have a diagnosis, if they’re on any medications, if they’ve never been dangerous or violent before, stress that. Make sure they know that this person has never had a violent encounter or situation. But once the professionals arrive, you do kind of have to learn to take a back seat to the situation. You’re still there to help and you’re still there to support, but you don’t get to be the decision maker at the moment.

Gabe Howard: One of the things that we should level set is that when you feel that you need to call outside assistance, when you’re calling law enforcement or first responders, you acknowledge that the situation has gotten out of control to where you can’t handle it. We need to brace ourselves for the fact that your loved one probably will be taken somewhere. So, we want to prepare you for those next steps.

Rachel Star Withers: Many times, when the health care professionals arrive, they’ll recommend a hospital stay. Now, something to note, voluntary admission to a hospital is the best. If you are able to voluntarily commit yourself, or if you’re able to talk to the loved one yourself about voluntary admission into the hospital, that’s wonderful. It’s also good to know what does insurance cover? Certain insurances usually cover like a set amount of days. The other option is going to happen is an involuntary admission where the first responders, the law enforcement, take the person and they’re going to go to the hospital or be put on an emergency hold, which is 72 hours. You’re not going to have any control if it’s the 72-hour hold. And honestly, that’s kind of probably what needs to happen. I know it can be very scary, both towards the loved ones and the person experiencing it, but when you’re taking on a 72-hour hold, that’s to make sure you’re okay and you’re not in immediate threat and to keep you from doing any harm to yourself or others.

Gabe Howard: We need to level set and remember the people who show up at your house. They are not the best people to put your loved one in a position to live well for a lifetime. They’re just stabilization. So, it’s actually a very, very good thing. And I need people to understand this. It’s a very, very good thing when those people are taking schizophrenia seriously enough that they understand that your loved one needs more medical attention than the people who respond to a 911 call can provide in your home in the moment of crisis.

Rachel Star Withers: Another thing that might be jarring as a loved one is the mental hospital or the inpatient psychiatric units. I think a lot of times people going in, they’re just imagining a hospital. If you’ve ever had a hospital stay, and that’s what they’re picturing, and an inpatient psychiatric unit or a mental hospital is run a bit differently. A few little things that kind of will stand out right away. They can be very noisy and almost appear chaotic and hectic. Unlike most hospitals where you know, you’re kind of in your own room or always on your bed. Mental hospitals tend to have more kind of common areas. People are moving about more.

Gabe Howard: The biggest thing that I want everybody to understand is that real life is not television. It looks chaotic and it’s hectic. There is. There is a ward filled with people who are severely mentally ill. There’s a ward filled with people who may or may not be suicidal. There’s a there’s a ward filled with people who do not understand logic or simple commands. And the goal of that ward is to keep them all safe, while also tending to their medical needs. We’ve all been to emergency rooms and we see how hectic emergency rooms are, and everybody says, well, of course an emergency room is going to be hectic. People are showing up with emergencies. I need people to apply that same logic to a psychiatric ward. I talk to many loved ones and they’re just like, I didn’t want to leave my loved one there. It was so ugly and it wasn’t pretty and there was nothing beautiful. And they weren’t allowed to have their phones. And there was just. Yes, it is true. They’re, they’re bland as can be, because bright colors can be triggering to people with serious and persistent mental illness. They have to have all soft furniture that’s heavy because they have to protect them from moving it or hurting themselves with it. There has to be wide open spaces and high ceilings so that they can see everything, so that nobody can have an isolated corner.

Gabe Howard: There’s just not a lot of pretty decorative design that you can do with these restrictions. I do not want anybody to hear that 100% of psychiatric wards and psychiatric hospitals are perfect, and you never need to check them out or put a critical eye on them. I just want to make sure that when you do check them out and you do put your critical eye on them, you’re not saying, well, they’re bad because there’s not a mural on the wall. The next thing is, is a lot of the things that happen in televisions, movies, pop culture, in psychiatric wards, like, for example, the patients playing ping pong. This is not the reality of an actual psychiatric ward. For one thing, a ping pong table has the paddles and little balls and the netting and sharp corners. It’s not the best activity for people who may be experiencing psychosis, for example. This is just the kind of things they do in TV, because they need the patients to be doing something and moving around for visual interest. It’s not the reality. The reality is, is there’s a lot of people sitting around and it appears that they’re doing nothing. And in those common rooms they may be doing nothing. The real work happens in the groups, the break outs, the one on ones with your doctor, etc. There is a lot of waiting, and people who are waiting look bored.

Gabe Howard: And I think that more often than not, what caregivers are reporting back is not oh, they just left my loved one alone, and he looked so sad and depressed. I think it’s actually my loved one was waiting and they looked bored because waiting is boring. I think if any of us are at the DMV and look around, it has a lot of similarities to what people in psychiatric hospitals look like because there is a lot of waiting. Any sort of medical treatment, any sort of hospital setting, and especially something as serious as a psychiatric involvement is just not going to look beautiful and stunning and pretty and happy. Your loved one may be suffering, but it probably has a lot more to do with the reason that they’re there than the there.

Rachel Star Withers: It’s important while your loved one is in the hospital that you stay connected. You can go and ask questions. If you see something that doesn’t seem correct or that seems off, say something. I wish we lived in a perfect world where you could be like, yes, the hospital is always good, but kind of back to what we were saying earlier, every area is different and a lot of the time these places are underfunded. So do your best. If you see something going wrong, do say something. If your loved one is telling you about issues, don’t just ignore them.

Gabe Howard: Rachel, it’s always important to point out that everybody in the hospital, psychiatric ward or otherwise, does better when they have engaged loved ones. But obviously the goal of going to the hospital is getting out of the hospital. Rachel, discharge plans. Share.

Rachel Star Withers: As you’re leaving the hospital, you should have had a meeting with someone there, and they set up a discharge plan or aftercare plan. I wish that they were all just amazing and had all of the things I’m about to mention, Gabe. A lot of times they do not. Um, a lot of times that aftercare plan falls on the loved ones and the person with schizophrenia to go out and research themselves. But a good discharge plan should have the diagnosis and what that diagnosis actually means. Also, the prognosis. What is this going to look like? What is the course of this illness or disorder? What is the treatments? What is the symptoms? What are the medications that have been prescribed? Ideally they might have some pamphlets or even some recommendations to other resources. But you need to find out who do you contact for next time? What about follow up appointments? What do you do when this happens again? Another great thing to have are recovery goals, plans for work, social outlets. You know, coming out of an extended hospital stay, a lot of your life was just kind of put on hold, and some of the things aren’t going to be there when you come out. You might have lost your job; you might have been dropped from certain things. And that can be really difficult to accept. Thinking I didn’t take a two-week vacation here. I was, I was in the hospital and I come out and a lot of my world has changed. And that can be very scary. And that’s something that you need to learn how to manage. Having family support during that is very, very good.

Rachel Star Withers: Also, where are you going to live? You might not be able to stay alone when you first get out of the hospital. As you know, I live with my parents. The option to live alone for me isn’t on the table anymore. This could be something that you have to discuss of where will my loved one live now? Are they able to stay alone? Is there some type of community situation we can work out? Is there like a facility they can go to? Can they move in with another member of the family? You want to go ahead and work out the crisis plan for next time. Go ahead and accept that it’s going to happen again. And the best time to work on these crisis plans are when things are good. And they need to include the person. Talk to the person with schizophrenia and say, okay, if this happens again, what did we do good? What do we need to change? Make sure that they’re part of the process because that’s how you build that trust.

Gabe Howard: Obviously, if you are making all the decisions and controlling everything, then the minute you leave the room, the minute you move away, the minute they move away. Whatever happens in life, once they don’t have you anymore, they will slide back to wherever they were. So, a good long-term plan is to help them make good decisions so that that recovery really, really sticks no matter where you are.

Rachel Star Withers: Tips for caregivers out there. One of the big ones I think is important for people with schizophrenia and their caregivers is reframing your expectations. Everybody wants to come out of a hospital stay or you know, a bad episode and be like, all right, I’m going to jump right in. I’m cured. Everything’s awesome. I can handle this. I’m cured. Let’s roll with it. And it usually doesn’t. Doesn’t work that way. And that can be kind of hard to take to realize that, you know, I went from working 40 hours a week to I can barely work 20. So, I had to get a different job to which I now can’t afford my rent. And, as the loved one, you do want to be supportive and be like, hey, you can, you know, we can get back to different things. But you also you don’t want to like, mislead them and be like, hey, we’re going to get you right back where you were within a month. Because the truth is that that might not happen.

Gabe Howard: And in fact, it’s not very likely to happen at all. I think the number one myth when it comes to schizophrenia is that if your loved one is just med compliant, goes to the doctor and works real hard, that recovery is one, guaranteed and two, quick. And the reality is, is that recovery from schizophrenia can take years. And I think that pop culture really does us a big disservice because it shows somebody with schizophrenia having issues, and then they take their meds and then suddenly they’re no longer having issues. It takes a long time to find the right medications. It takes a long time to find the right coping skills. It takes a long time to learn to manage this disorder. And while all of that is going on, life is continuing.

Rachel Star Withers: Mhm. One thing I know that’s helped me, and I think my parents are like this also with their expectations, is learning that when you reframe them refocusing on what’s important. I know with me it’s I just want to be happy and live an awesome life. That looks different, you know what I want, and that expectation for myself looks different now than it did 15 years ago, than it did when I was in high school. And parents, when they look at their children, they see, you know, oh, you can be anything. You could do anything. You have the whole world in front of you. You do. But yes, things do change. And I think the most important hope that you would have is that your child is safe and happy. I think that’s the most important thing you can focus on as a loved one is how can I support my person so that they can live life? Along those lines, celebrate success, little successes, big successes.

Rachel Star Withers: You know, if you notice that the person has been doing really amazing at their medical compliance, meaning they’ve been taking their meds every day, they’ve been just sticking to a routine. Celebrate that. It may seem silly, but celebrate it.

Gabe Howard: We have a great guest who you interviewed. He’s a father who has a son with schizoaffective disorder. We’re just going to go ahead and play that right now.

Rachel Star Withers: Today, I have the pleasure of speaking with Scott Joffrion, who is a father of an adult son with schizoaffective disorder. Thank you so much for joining us, Scott.

Scott Joffrion: Thank you, Rachel, for having me. This is a really an experience that I’ve gone through, and I want others to also have some insight and understanding of the things that I went through early on with my son’s diagnosis.

Rachel Star Withers: How many years back did this start happening?

Scott Joffrion: He was struck in 2016. I believe he was 19 at the time. And so, we’re pushing, 6-7 years now. I wasn’t aware of any family history of mental health, however, digging deeper, you find out more. And that’s probably more about the stigma. You know, there’s not a lot of talk, more like whisper. And my son was moved out and he was entertaining some things that I think triggered some, some drug use. And then all of a sudden, his personality became very confrontational and it became really difficult. With delusions, the psychosis and all the emotions that are wrapped up in that.

Rachel Star Withers: Did you suspect that it was a mental disorder when this started happening?

Scott Joffrion: I knew something was definitely wrong at that point I said, this is not normal. It was just very delusional. So, what it specifically was, I wasn’t sure. If it was alcohol or drugs or, you know, gosh, I didn’t even really use the word psychosis then, you know, because he’s crazy. I just didn’t understand it.

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Gabe Howard: And we’re back discussing navigating schizophrenia as a caregiver.

Rachel Star Withers: How did you get him help? Was he willing in the beginning, or was he not like, what happened with that?

Scott Joffrion: Unfortunately. Unfortunately, no. There was a police intervention. Which led to incarceration. And at that point, I began to seek out help with the mental health services outreach in the local area. But it was kind of like you’re knocking on the door and you’re making calls and there’s no one answering. Or you get somebody at the front desk and we’ll have somebody call you. And I don’t want to negate the work that these services do. I think it’s they’re overwhelmed. But that’s how it started. Law enforcement incarceration and was able to get him into probate and have him then hospitalized. That was like I had no idea how all this worked. And it was very difficult and it was very stressful. I can’t imagine for him because he’s psychotic and he’s in jail. So, it was it was very difficult all around.

Rachel Star Withers: When was he given the diagnosis of schizoaffective disorder?

Scott Joffrion: That did not come for a few years. But what I will tell you on my first call from the doctor at the hospital who I have respect. On his first hospitalization, was that the doctor said this will be one of many times in the future.

Rachel Star Withers: Wow.

Scott Joffrion: And I’m like, okay. To me that was just a super scary and not a not hopeful statement at all. Um.

Rachel Star Withers: How did that make you feel? That would be terrifying.

Scott Joffrion: Uh, I was it was it was a deep breath. It was like. Oh, okay. You know, all I knew about, you know, schizophrenia and it didn’t even really get my name, but, well, there’s anti-psychotic medication. They’ll give me some antipsychotic medication and he’ll come home and. Antibiotics work and this will work too. And? But then when I thought about what he said, this will be one of many times to come. I’m like, well, okay, now what? Eventually he was released and he got his follow-on appointment. But there was just a real disconnect. We went to the acute care clinic and he has a follow up appointment with his doctor. And that was it. And like I’m like, okay, well that’s what we do. Well, there was there wasn’t anybody who sat me down and said, hey, this is this is what we know now. Obviously, we don’t know at all, but these are some things that you should, you know, find out more about. Here are some resources. Here’s a contact. Here’s a group. Here’s an individual that can help you understand more about, you know, the situation that your son is faced with. There was there wasn’t someone there for that. Now. I can. I need to take ownership for my own self. You know, I had other children, adult children and wife, but. If somebody gives me a piece of information, normally I try to go chase it down and find out more about it. But at that point I was really overwhelmed with what was going on emotionally. And so, it was it was difficult.

Rachel Star Withers: Did the doctors really give you any other advice outside of letting you know this was going to happen again?

Scott Joffrion: No, no, no. Follow up meeting and see a therapist.

Rachel Star Withers: Wow.

Scott Joffrion: Yeah.

Rachel Star Withers: And I do have to ask, because your son was over 18 when all of this happened.

Scott Joffrion: Yes.

Rachel Star Withers: Did that play into it? Because they just couldn’t tell you anything?

Scott Joffrion: You know, that’s a that’s another hurdle. At that point I did not have permission and because I was the, the core of the delusion, I was the last person he wanted to give permission to. I quickly learned to start communicating with the doctor. Even if they would not communicate back with me, I would give them information. Okay, these things occurred. Hey, this is this is where he’s saying what he’s doing.

Rachel Star Withers: During this time, was he on his medication? Was he in therapy?

Scott Joffrion: So, it was irregular. I would go visit him and he was living in his own place and I would see. You know, holes in the wall. I would see medication not taken. And one of the key cognitive issues that he’s faced with is the disorganized thinking. So, I knew that he was not consistently taking partially because he maybe he didn’t want to, but also partially because he couldn’t remember to or he was, you know, he’s never managed medication in his life before. I mean, for anybody that has to manage medication now on a daily basis, it becomes it’s difficult. So, all those things worked against them. And he had he ended up having a couple of more episodes and hospitalizations. I think it was three years after his initial event, where he was taken into another facility. And he met a doctor. And put him on a new long lasting injectable. So, then the doctor began to break down. Hey, this is what’s going on. And the doctor became a very helpful person in helping me understand how to deal with these things in the. In the days and weeks and months and years to come.

Rachel Star Withers: Right.

Scott Joffrion: What he learned a couple of things. First he decided to move home. He needed support. So, I think he was convinced he needed support. So, he moved home. But that was difficult because of emotional turmoil that had occurred previously. So. I didn’t know how to deal with this. I was angry because he was attacking me in different ways because he was angry. We got into this argument and dad wanted dad’s way and he said, Dad, I need a break and you need a break. I’m like, Holy cow. My son, he is telling me what I need to be doing. And, and that made so much sense because I realized the more I pushed, the brighter the fire got inside of him. And I was pushing stressors. I wasn’t asking questions. I was a negative influence on him. However, he came to me after coming out of this therapy and said, hey, we need to we need to separate. And we did. And when we started, when I started behaving that way, he was already doing that. Well, maybe a week and a half later, he came to me and said he was having some really difficult thoughts, and he thought he should go back to the hospital because they had talked to him and he did. He went back in again. He stayed there. He didn’t like it, you know. But he knew he was safe there. And that’s what he wanted. He wanted to feel safe for himself. And then he went through a little bit more of the intensive therapy after. What a game changer this doctor and this team put together that made. Took this to a whole different level of treatment and outlook on my son.

Rachel Star Withers: And that’s incredible because that took you multiple years to get to that point.

Scott Joffrion: Three and a half. Three, three and a half. Somewhere in there? Yes, ma’am. Yes it was.

Rachel Star Withers: Wow.

Scott Joffrion: Yeah,

Rachel Star Withers: Wow.

Rachel Star Withers: How are you dealing with this personally?

Scott Joffrion: So, wow. That’s a good question. Sometimes I deal with it in different ways. Sometimes it’s I’m positive. Sometimes it can catch me off guard and I can be negative. Um, what I have found through the process after he came out of the hospital is I went out and found somebody to help me with my marriage and my understanding and dealing with my son and how I could be the best person I could be. Because if I’m not healthy mentally or physically or otherwise. My goal, my heart is to take care of my family. If I don’t take care of myself, I can’t take care of them.

Rachel Star Withers: And that’s so important because caretakers, loved ones of people with schizophrenia, they forget about their own mental health, they just kind of let their selves go by the wayside because they’re dealing with this loved one who has something serious going on. But you didn’t. You were able to see that you needed help also. And that’s awesome.

Scott Joffrion: Yeah. You know, I on a personal level, I can isolate things in my life. And I think to some measure, we all do that. However. What I found is, is by isolating it or capping it, it just it began to bleed. It bleeds into many other aspects of your life. Even if you weren’t even speaking to somebody, you just start having this feeling. So, I will say this, my son has allowed me to be part of practically every doctor visit with him and the doctor. I asked permission. Because I think this participation is so important because I’m the glue on the stick here. So, I would ask, could I join after they talk privately? And I was invited in. And then it just became more of a natural thing. So, the thing I learned in that doctor’s office is you got to let them talk. You got to let your loved one talk. We always want to sit there and, oh, well, my son, this is how it should be. And let me say that right for you. Or let me clear that up for you, doctor. You know, you just have to sit there and listen and then just be ready to answer questions. This took me a little bit to learn, but it, what I found it did, it gave my son confidence. That I wasn’t steering him. I wasn’t steering the doctor, but I was participating and suggesting. And all along the way, as long as we weren’t in crisis, my son made the decisions on medications. Because at this point he’s wanting to get better. At this point, he’s seeing he wants to he wants his life back.

Scott Joffrion: Allowing our children or our loved ones to lead their life to the best they can. You can’t get in front of everything. These are all things I’ve learned on the ropes, until I started listening to your podcast. I got involved with NAMI. I’m involved with Team Daniel. So. When I walked into my first NAMI support group meeting. Like, I know everything about this. I mean, I’ve been going through this for six years. I had an arrogant attitude when I walked in there. I thought I could bring something to the group that was valuable. But what I realized is I left there learning so much more. And the more I learned, the more I wanted to learn. A short follow up, after that I took the NAMI Family-to-Family education course. Blew me away. Now somebody could have showed me this six years ago. I don’t know, but. But it really just breaks it down. Somebody would have sat me down in the support group and said, hey, these are the things you’re going to battle. And here’s some tips on how to do this. Or here’s these are medications that work in this way, and these are medications and these are the challenges. You know, You know, we talk about in the mental health environment that this is a this is a team. This is a village that we have to put together. Um. I’ll tell you, one person trying to be the village for your family is very stressful. So, getting involved with the groups, going through the trainings, listening to the podcast, you start to realize you’re not the center of gravity for the whole group. And there are resources out there. And you know, the best thing out of all this learning? I have real hope for my son. Right now, he is in, he’s in Civil Air Patrol, working right alongside me and the volunteer organization.

Rachel Star Withers: Wow.

Scott Joffrion: He’s living on his own now for the last eight months in an apartment. Not too far, but he prefers sometimes he comes over and stays on the couch because, you know, home is home. He is working now a full-time job. What I see is meaningful recovery. Not just enough, but meaningful recovery. And I think there’s more. I think there’s more. I think there’s more I need to focus on getting him involved with outside of work and outside of home. You know, when, when he was going through this, the first few years, he did not want to go out. He didn’t he did not want to go to the grocery store, or I would drive him and he’d sit in the car. But what I found is the continued therapy of being with him and us going out and just being there. And as he got better, now that anxiety is not there. He just, you know, he even went to a concert. We went to a concert this summer and he was just he just loved it. I’m like, man, I’ve never seen him smile this way before. So

Rachel Star Withers: Wow.

Scott Joffrion: I see meaningful recovery. But all this has come through a long road of learning. And I really ask myself in the end. What? What could be different? What would be different had we been able to know these things sooner? What could I have done? I realize it’s not my fault, but you know. There’s just so many things that I think that could have influenced his recovery. But I just wish. I wish I knew a little bit about what was going on in the onset and somebody helping me go through that and understand it better.

Rachel Star Withers: What advice do you have for someone who is in the position you were six, seven years ago?

Scott Joffrion: Well. Um. First of all, if you understand what the problem is and it’s schizophrenia or schizoaffective, even if you don’t, the psychosis, the symptoms, you really need to talk to an expert. And sometimes the experts show up at the family support groups because they lived it. Now, I know there’s medical experts, but you’ve got, you’ve got to, gotta get in with the support group. A support group would have really given me the best foothold to start this journey. And I think the personal experience talking to people who are involved. Here’s here’s my objective in overall. It is education for these these people who are going through the same situation. And that education is so important, even if it’s just basics in a family support group meeting or more advanced in the Family-to-Family training. The fact that people don’t understand schizophrenia, My heart is to reach other family members like myself. And so that’s that’s what I’m doing

Rachel Star Withers: I have a question. And something you talked about was your son turning against you during the times of psychosis?

Scott Joffrion: Right?

Rachel Star Withers: Can you just talk to me emotionally what that was like?

Scott Joffrion: Wow. Yeah. That was. First it was trying to plead. With him that that wasn’t true, that that wasn’t right. But when you’re talking about, you know, not hallucinations, but delusions. He there was no talking about it. And then I began to internalize the attacks as personal attacks. Now, on the outside, these are full on personal attacks about all the things that I didn’t do or did do. And they were very, very sharp. So that that that made me angry. It put distance. It made me not want to be there. It made me want to separate. That was that was probably some of the worst parts of this whole thing that we’ve been going through. And I’m glad you asked me that question, because here’s what I’m going to tell you. Through it all, he never quit on me and I never quit on him. I think I told you I had six sons.

Scott Joffrion: I love all my sons. I love them equally. But by far my best relationship is with my youngest son. And it’s because we have been through so much. And it’s because he knows I’m there for him and I know he’s there for me. Umm, it’s tremendous now, our relationship now. He called me today. He goes, hey, sorry I was grumpy at you this morning because the medication makes him sleepy, so I’m his alarm clock. He called me, you know, an hour ago and he said, hey, just want to let you know, I’m sorry. I was a little grumpy this morning. So, so that tells me he’s even sensitive to my feelings. He will ask me, hey, dad, how are you feeling today? Are you feeling stressed? I’m like, nobody asks me that but you. I’m like, this is. I’m like, it makes me happy. It makes me very happy.

Rachel Star Withers: Having gone through all of this, Scott, do you have hope?

Scott Joffrion: I absolutely have hope. And. I think that having learned what I’ve learned, and there’s so much more to learn and then sharing that with others. That’s the first message I share with anybody that I talk to, I always give my experience, my son’s experience. But I say, listen, there is hope. And you have to always have hope. Hope is what takes us through these things. Now. Now hope is some ephemeral type thing. It’s not. It is. It is our attitude. I have hope so much for my son and to become even more what he wants to be more meaningful recovery. I have hope that there are others who have the same opportunity, and I hope that I can be a part of that.

Rachel Star Withers: Well, thank you so much, Scott. This has been absolutely wonderful. Um, very excited to get to talk with you today. And I know my dad is going to have a hard time listening to this interview of yours because he’s kind of in the same boat. Um, a lot of the things that you shared, I know that he’ll be I know my dad. He’ll be crying when he hears this.

Scott Joffrion: Yeah, I, um, it’s been a little emotional for me, too, but, thank you, Rachel.

Gabe Howard: Rachel, as always, great job. I have to say, while I was listening to it, I was thinking about the interview we did with your mom and I’m just curious, what was that like for you? Interviewing the father of somebody with schizoaffective disorder? Did you see your dad in him? Did you see yourself in his son? What? I have to imagine that that just that just conjured up some feelings in you.

Rachel Star Withers: It absolutely did. It. It was very much like I feel my father would respond and how he has in my own situation. And it’s kind of weird. It’s like I know my parent’s side of the story, but it is different to hear it from someone else and to hear how hard it is to watch someone go through that. Like, I it makes me appreciate their side of what was going on also, you know, because, yes, I was having a hard time too when I went psychotic and had, you know, real bad episodes. But my parents were also terrified in a different way, and they were wanting to help. And I know my dad especially, he’s the kind of person that he wants to come in and fix everything. And you can’t with this. And I. It was very it was very touching for me to listen to Scott because I just over and over I heard his emotions really reflected how I know my parents are with me, and I know how so many other loved ones and caretakers out there listening are with the ones they care about.

Gabe Howard: Rachel, I have to say the hearing it come from him with his emotion and how it impacted him and his family and his other children, and he and his wife navigating this and just. I. That that to me was one of the most amazing things that I think people really forget that it’s not just rote facts. It’s not just a do this, don’t do that. These are impacting real people and real families. I also liked how proud he was of his son. I got to tell you, we often hear over and over and over again how, how tragic and how much crisis and how disappointment and on and on. But he took the time to talk about how proud he is of his son and how hard his son is working. And I, especially as someone who lives with bipolar disorder, hearing a family member just talk about how proud they are of their child that that hit me in the feels.

Rachel Star Withers: The part that really hit me in the feels was when he said, because he has six sons, he says, you know, I love all of my sons the same. But with his youngest one who has schizoaffective, they have the closest relationship. And that that made me think about me and my dad. We definitely have a very close relationship, partly because, yeah, I have to deal with all this and he’s the one who’s always checking on me. And I just thought that was so, so sweet. And I just, I don’t know, that really touched me. I was just like, oh, warm and fuzzy inside.

Gabe Howard: I think it just serves as a really great reminder for all of our family members, for all of our caregivers who are listening, that obviously we need support and we need to vent. But if we’re only sharing those negative stories, those scary stories, those anger stories, those fear stories, we are kind of creating the impression, accidentally and inadvertently, that we’re not proud of our loved ones. I think it’s important to throw in some of those. You’ll never believe what happened today, I’m so proud of my loved ones’ stories just to balance out that conversation.

Rachel Star Withers: Something that Scott said that really hit home for me was find the experts around you. You know, when we think about experts, we think those with really, really impressive degrees, we think about like the highest doctors, you know, the real specific doctors who specialize in something like. But we forget about the experts around us, other people who have gone through what we’re going through. Like some of some of you listening out there have way more knowledge on specific things than anyone else. And I want to encourage you to share that because your knowledge is going to give someone else so much hope, especially somebody who is in the midst of this for the first time. And they’re like, I don’t know what to do.

Rachel Star Withers: All of us are experts in different parts of this journey, and we can learn so much from those other experts around us. I think that talks so much of why support groups are important. Support groups not just for the person with the disorder, but for the caretakers, for the family members being able to share and be like, oh wow, that’s a great idea. I never thought of doing blank.

Gabe Howard: And remember you can have as many experts as you want. I don’t want anybody to listen to Rachel and hear, oh, well, she’s saying, ignore the doctors and only listen to the patient experts. Nope. Nobody’s saying that. You are allowed to have unlimited experts. And I think that’s what’s very valuable.

Rachel Star Withers: As we close today, I want to take this moment to talk specifically to the caregivers and the loved ones out there, because I think there are some very important things that you need to hear. It’s not your fault. Especially with parent child relationships, you want to blame yourself. The schizophrenia is not your fault. If you look and think, how many people across the world have schizophrenia, I promise you, you didn’t cause it for all of them. Also, you cannot fix this. This is a mental disorder. It is a lifelong thing. Yes. You’re going to make mistakes. Yes, you’re going to have regrets. The goal is to be there for the person with schizophrenia. Practice self-care. Remember to set boundaries and build a support network not just for the person with schizophrenia, but for yourself also. Look around at the other members of your family. Who can help with what? Who can be there for you also? Never be afraid to reach out for help.

Rachel Star Withers: The most powerful thing I think Scott said in our interview was hope is an attitude. I love that. It turns hope into a choice. And hey, you’re going to have to accept, you know what? I’m going to lose my cool. I’m going to be depressed. I’m going to react inappropriately sometimes. I’m going to get frustrated with my loved one. I’m going to get frustrated at their team, care at schizophrenia in general, but I’m going to be there. And I’m going to be there with them together, learning how to navigate schizophrenia. Thank you so much to all the family members, friends, community members and caretakers. And thank you for listening to this episode of Inside Schizophrenia. Please like, share, subscribe and rate our podcast and we’ll see you next time here on Inside Schizophrenia, a Healthline Media podcast.

Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at psychcentral.com/is or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.