Caregiving for Schizophrenia
A third of all people will be a caregiver at some point in their lives. Caregiving for people with schizophrenia presents challenges that many people are ill-prepared for.
Host Rachel Star breaks down the principles of caregiving and creative ways to navigate schizophrenia.
Dr. Sarah Kopelovich joins to share schizophrenia caregiver specific training.
About our Guest
Sarah Kopelovich, PhD is a forensically-trained licensed clinical psychologist in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine. Dr. Kopelovich is an Assistant Professor in the department and holds the Professorship in Cognitive Behavioral Therapy for psychosis. Her current research is specifically oriented toward implementation and dissemination strategies for psychotherapeutic and psychosocial interventions for Schizophrenia Spectrum Disorders. She regularly conducts workshops, seminars, and professional consultation across the country for an array of mental health professionals and trainees in CBT for psychosis; Recovery-Oriented Cognitive Therapy; Individual Resiliency Training for First Episode Psychosis; Assertive Community Treatment; and diagnostic, suicide, and violence risk assessment.
Back to Life, Back to Normality: Volume 2 -outlines many of the cognitive-behavioral techniques used in the Psychosis REACH training.
Computer Generated Transcript of “Caregiving for Schizophrenia” Episode
Editor’s Note: Please be mindful that this transcript has been computer-generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: Welcome to Inside Schizophrenia, a look in to better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Sponsor: Listeners, could a change in your schizophrenia treatment plan make a difference? There are options out there you might not know about. Visit OnceMonthlyDifference.com to find out more about once monthly injections for adults with schizophrenia.
Rachel Star Withers: Welcome to Inside Schizophrenia. I’m your host, Rachel Star, here with my wonderful co-host, Gabe Howard. Gabe, now it sounds at first like we have a very squishy, lovey-dovey topic. Caregiving, right. I could feel like just the title of it. It sounds like a nice Hallmark movie kind of thing going on. But we’re going to get into some kind of, I don’t want to say deep, but intense stuff with it. We’ve talked before, Gabe, we feel strongly about that word being used towards people with mental health problems.
Gabe Howard: Caregiving is universally thought of only in the positive, but as folks are going to learn, even very positive things can have a flip side.
Rachel Star Withers: And right off the bat, I don’t like the term caregiver because it automatically puts that person kind of over the other one. So if my mom is my caregiver, then obviously she has to take care of me for whatever reason. I’m not able to. I’m sick. I’m inferior. You know, there’s a problem somewhere, which is true in it, but it does, it just kind of that mentally puts it out there. And, you know, Gabe, I gush all the time about my parents. They’re absolutely wonderful. And I cannot live on my own. It’s hard for me to have to accept that on some level that they are my caregivers, because that means I’m a burden to them. And I know they would never describe it that way. But it makes me feel bad as a 35 year old grown woman that I do have to depend on somebody else.
Gabe Howard: So here’s sort of the issue with caregiver, right? It becomes all encompassing. Let’s say that tomorrow you get in, we’re going to use car accident and for the purposes of this analogy, you’re going to recover. But in the car accident, you break both arms and both legs. Now, that’s like pretty high level caregiving. Nobody would argue that you need care and that the person doing it is your caregiver. But in that analogy, remember I said you’re going to make a full recovery. Eventually you start getting use of your body parts back. First your hands work and then your arms work and your family or your caregiver starts doing less and less and less and less and less. And in physical health, people acknowledge that. People acknowledge that you’re needing less assistance and less help. Over on mental health, it doesn’t matter if you are the worst of the worst, the sickest of the sick, or if you are Rachel Star and all you’re really doing is just living in your parents’ basement, hanging out. It’s talked about in exactly the same way, and I think therein lies the problem. Right? Because now when people say, oh, Rachel, your parents are your caregiver, they immediately assume that you are the worst of the worst and have no partnership, no control, no faculties. And you are not assisting in your own care.
Rachel Star Withers: And I also think whoever they’re talking to, like this third party, they automatically feel sympathy, like you poor thing, you have to deal with this, you poor thing. And I don’t want to say, like as the person who has the issue, like, I get jealous, but it’s also like, OK, well, they’re not the ones who are hallucinating.
Gabe Howard: We have more sympathy for the people next to the person with schizophrenia than we do for the actual person suffering from schizophrenia. And could you imagine if somebody said, oh, you know, Rachel has cancer, but the real people suffering are her family, like everybody would just be up in arms
Rachel Star Withers: Oh, yeah.
Gabe Howard: And not tolerate that. But if you say, well, you know, Rachel has schizophrenia, but the real people suffering are her family people immediately they’re like, well, but I mean, they’ve gone through a lot. It can’t be worse for them than it is for you, Rachel,
Rachel Star Withers: Yeah, to make it clear for everybody, when we were saying caregiver today, we’re not talking about the doctors, nurses, that kind of thing, we’re talking about the kind of normal day to day stuff. So a caregiver, they could be paid but most caregivers are unpaid members that are related or in the social circle of the person who is needing care. Usually our caregivers don’t have any professional training. We have a wonderful guest today who’s actually going to talk to us more about caregiver training. The majority of caregivers are women. I think with a lot of women, you already have that kind of motherly role and they’ll usually be the first to step up to be the caregivers. Typical duties, this is all little things, OK? Daily activity stuff is what caregivers do. They manage medications, making sure that you’re taking your medications, you’re taking them correctly. They may talk to the doctor or nurse or whoever on your behalf.
Rachel Star Withers: With schizophrenia, what we need might change. So caregivers, when it comes to schizophrenia, may or may not have to help with like cleanliness, that kind of thing, making meals, making sure that the person is eating healthy, not just eating Pop tarts nonstop. So right now, there’s around 50 million family caregivers nationwide in America. Fifty million people. That’s so many. And if you were to pay them, in theory, it would be around three hundred and six billion dollars. So these family care like you are worth a lot of money. To my people that are out there listening, it is a thankless, usually moneyless job. And a third of us, a third of all people will have to be a caregiver at some point in their lives. But you also have to take into account the person and you need to make sure that they are still feeling respect and dignity. No one wants someone telling them what they can eat, what they can’t eat. OK, this is what you’re going to do today. Like nobody wants their whole life controlled by somebody else.
Gabe Howard: And nobody wants to be seen as less than. Oftentimes, people experiencing schizophrenia don’t have that level of respect to balance out the burden. We just have the burden. That’s a lot to overcome, to be seen by society as hurting our families in addition to managing schizophrenia. That’s, that’s big. That’s, that’s mighty big. We don’t want to hurt our family. We love our families. And we are incredibly thankful for everything that they’re doing for us. We just want to make sure that we’re not lost in that discussion.
Rachel Star Withers: If you are a caregiver for someone who, like you said earlier, has a broken bone, if you’re a caregiver for someone who is elderly, you kind of know what to expect. But with schizophrenia, it’s not that predictable. The caregiver of someone who has schizophrenia, you have to be on the lookout for other things. One of the biggest is going to be medications and side effects. If the person that you are helping also has depression, you really need to kind of watch out for suicidal tendencies, kind of signs that this person might not need to be alone. This person might need to have their medication changed up. And the side effects I know, Gabe, and you’ve seen me do my little dance here, but I have tardive dyskinesia where I shake and there’s just a lot of side effects that can affect people with schizophrenia differently, it’s not predictable. With those medications, and we had a previous episode about this, it opens you up to being vulnerable for more diseases. So, for instance, diabetes is a huge risk if you have schizophrenia. If you’ve ever been on any antipsychotics, you do tend to put on weight very frustratingly quickly. So caregivers need to kind of watch that. And I’ll be honest, Gabe, I don’t like the idea of someone telling me what I can and can’t eat.
Gabe Howard: Well, right, because you’re an adult and you need to make your own decisions and let’s take this at a base level like a human dignity level, if you are not choosing your own meals, your own food, if somebody else is making that basic decision for you, how much wellness do you actually have if you don’t even have the autonomy to choose what you put in your own mouth, what you eat for sustenance and meals?
Rachel Star Withers: Another thing that changes with schizophrenia versus other types of disorders, diseases, et cetera, is the cognitive ability, disorganized thoughts. Sometimes, and it’s so hard to explain when people ask me about this, but sometimes, like, I’ll forget something very simple, like, how to zip up my jacket? It’s just like the piece is gone and you can have a full conversation with me, I’m fine. But then I’ll go to do something. And I’m like, oh, no, how do I do this random thing? And I’ll get confused. That’s what caregivers have to watch out for with schizophrenia. Like, I don’t need anyone to help me dress. I don’t need anyone to come over and pick my clothes out for me. But then some days I get confused and I can’t remember how to do something. And just throwing this out there, my way around that is that I lay out my clothing ahead of time and I always have a backup set with no fun things like zippers and things. Schizophrenia isn’t predictable. Gabe, a few weeks ago, I had a really bad psychotic episode and I haven’t had one this bad in way over a year, 99% of the time, I don’t need help.
Rachel Star Withers: I hallucinate and I have little delusions and things, but I’m able to manage it myself. I usually don’t even tell anyone. But this was different. And when it happened, I became very scared. I knew I did not have a grasp on reality. I couldn’t get my phone to work. I was trying to text my mom who was upstairs, and I couldn’t seem to text. I couldn’t remember how to text. I was like fighting my phone. I don’t know if I was texting the right person couldn’t put words together and somehow I got in the kitchen. Eventually, my mom, she did get some of the text messages. She came out, got me and stayed with me the rest of the night. That was very scary. And I’m very lucky that she was there to step in. Again, this is once a year that she had to do that. But we don’t know when that once is. She may have had to, like, be up early for work or something the next morning. So taking care with schizophrenia, it’s very unpredictable. And it’s kind of like you’re on call, like you’re ready to help if the person needs help in this way. But most of the time they might be OK.
Gabe Howard: And obviously, that can be frustrating for all involved, I mean, who wants to be on call? You’re going about your day, you’re doing what you’re supposed to do and then boom, right in the middle of it, this thing happens that you have to be 100% for your loved one and that you want to be 100% for your loved one. And hopefully your loved one realizes what you’re doing and they need help. And that’s why I think that it is extraordinarily important to make a plan when you’re well. You know, one of the things that that Rachel does well and that we’ve talked about in this whole podcast series is she doesn’t just talk about schizophrenia with her family when she’s in crisis or when she’s hallucinating, when she’s having a problem. This is a continuous conversation that they have even when she’s completely well. The analogy that I like to use is it’s like having a fire drill when the house is on fire. But the best time to install smoke detectors and the best time to have a fire drill is when your house is not on fire. It’s very much the same in schizophrenia. And I think a lot of caregivers miss this. And in fairness, a lot of people living with schizophrenia, they miss it, too. We want to believe when everything is fine that it’s going to stay fine. And we just want to focus on the here and now and not make a plan for what happens in the event that things go a different way.
Rachel Star Withers: So many of these caregiver relationships, like my own, is parent, adult child and mothers out there, a lot of you just kind of don’t step in to caregiving. You just step into mothering, just taking over like you did when they were five. And that’s where a lot of the tension comes from. ‘Cause I’ve talked to so many mothers who are just overwhelmed with trying to help their adult child and don’t know what to do. And part of it is you’re trying to do too much. You need to acknowledge what the person with schizophrenia can and can’t do. Like, I would much rather just bring someone food and be like, eat it, then say, OK, well, let’s work out the plan. You’re going to cook this, not, you know, I get it. That’s like more work. It’s totally easier to just dominate over someone and make all the decisions. But you can’t. Gabe, so I have a friend around in his 30s, but he has schizophrenia and he lives with his parents and he’s on disability and they’re constantly fighting because his parents take all of his disability money and he doesn’t like that. He’s like, that’s my money. And I was like, well, if you were out on your own, you would still have to pay for rent, groceries, utilities, etc. So I do believe that they are entitled to some of that because you’re using those things. I don’t think they should take all of it. But when they do give him money, he immediately spends it on alcohol, gets drunk. I don’t know, Gabe. What are your suggestions? Because I know so many people that get caught in like, what do we do? We’re stuck in this circle and don’t know how to get out of it.
Gabe Howard: In this scenario that you’re given, both sides are right, the family needs the money for the expenses that the person living with schizophrenia is generating. We can’t ignore that. But we also can’t ignore that the disability check is this person’s. It’s in their name and they feel like they’re not being given a choice. They feel like their money is being stolen. But then again, let’s go back to the other side. They feel like, well, when I give that person the money, they make dangerous choices. You know, buy alcohol, and especially in the case of, you know, the family dynamic, if this person uses alcohol, it interferes with the meds. They have a crisis. This crisis affects the whole family. So when taking a look at everything, these are very difficult things to resolve because the reality is, is both sides are right and both sides are wrong. This is where it’s really important to understand that. I call it negotiating in good faith. If you have this idea in your head that the other side is wrong and you’re right, you’re not negotiating in good faith. And I’m speaking both to the caregiver side and the side of people living with schizophrenia.
Gabe Howard: And that also points to a larger problem, which those two sides are often at odds. They’re often looking at each other as heroes versus villains when in actuality you’re neither of those things. That’s very important. These things get resolved in any number of ways, whether it be by compromise, whether it be by walking a mile in the other person’s shoes, whether it’s understanding. So often, caregivers don’t think that they’re the ones that need to seek mental health help. They don’t think that family therapy is needed because after all, they’re this big, strong caregiver. It’s only the person living with schizophrenia that needs help. It’s vital that you understand that if something is contributing to the mental health decline of the household, it means that the entire household needs mental health help. And so often people think, oh, well, I’m not as sick as my loved one with schizophrenia, therefore I don’t need any help. Don’t think of it that way at all.
Rachel Star Withers: And you have to know what you can and can’t do. Most people have to work full time. OK, so we get this. This is almost like a second job or maybe a third job for many on top of your life. And it becomes intense. Family members are awesome because they’re usually the main support system. Whenever you’re making that decision of should the person with schizophrenia live with you, there’s actually I like this. It’s a little chart, Gabe, I have here, but it says
Gabe Howard: I love charts as well.
Rachel Star Withers: I know, but it says, living with your family and you have schizophrenia works best if you are high functioning and you can still maintain friendships and activities outside of the home, meaning I’m still able to go to a part time job, volunteer work. I still have friends I talk to. It’s not just me and my parents and that’s it. Another is that the relationship around the family is relaxed. You know, if you always have a lot of tension with a certain family member, it’s going to be a lot worse when you add in schizophrenia and then living together. You want to make sure that there are other support systems. Again, you can’t do it all yourself. We’ve talked about NAMI and different things, support groups, at the doctor asking them. Make sure as the caregiver that you’re not all the person with schizophrenia has and make sure this last one here that the living situation is not negatively impacted, if there’s young children in the home, by the person with schizophrenia, children come first. Always make sure they’re protected and everything. I’d say for the most part, my family has, they fit all of those.
Gabe Howard: Ok, Rachel, but along that same vein, what things are immediate disqualifiers? Like living with the family is not advised if what happens?
Rachel Star Withers: Well, one, if the caregiver is single, ill or elderly, that’s going to be really hard. You know, someone in their 80s is going to have a very hard time helping out with someone with schizophrenia. That’s just the truth of it. If the schizophrenic is very low functioning, if they pretty much they need more help than you can give them. So when I say high functioning, low functioning, what I mean is I’m usually considered a high functioning schizophrenic, meaning that for the most part I’m good for, let’s say, two weeks I could live alone. But after that I get weird and I have, like, little spurts of times when I’m going to need a lot more help. But I’m high functioning. Low functioning would mean I need a lot more help, more supervision. I need someone kind of stepping in my life, helping me make important decisions, helping me with my money, etc.
Gabe Howard: Makes sense. Understood.
Rachel Star Withers: You shouldn’t be a caregiver for the person in your family if it’s causing stress on your marriage, if your life is in shambles, you can’t help anybody else. I can’t stress that enough. And you’re going to hate that person you’re trying to help because you’re like, oh, well, I’ve lost my marriage. I’ve lost my job because of this person. It’s going to impact you both negatively. You just have to accept that you cannot do everything.
Gabe Howard: And I think that’s really the key. What we want to point out is that doing something about it doesn’t necessarily mean that you personally do it. It could be a matter of getting the person to the right care. For example, we’ll go back to the car crash scenario that I gave. I am not an EMT. I am not a trauma surgeon. I don’t know how to set a bone. So if that happens to my friend Rachel, the best thing that I can do for her, of course, is call 911 and get her the help. In mental health, we have this tendency to do just the opposite, to say, oh, I’m going to pick you up, Rachel, and we move her from the car accident, we start doing all kinds of damage because we’re unaware. Sincerely, ask other family members to pitch in, call friends, call the local charity, schedule an appointment with a therapist, find out what you can do. And honestly, by listening to this podcast, you’re already starting that process. You’re looking for hints and tips of how you can be better. Again, I really feel the need to be clear. Me calling 911 one for Rachel in the car accident analogy is me doing a hundred percent of what I can do and ensuring that Rachel has the best possible outcome. We need to start thinking that way in mental health rather than thinking, OK, well, I have to fix 100% of this because after all, I love my child, friend, family member, etc.
Rachel Star Withers: So, Gabe, we’ve really been a downer up until this point,
Gabe Howard: And we don’t mean to be
Rachel Star Withers: We don’t mean to, but we have all these problems we discussed. How do we fix them? One of the best things you can do is set out rules or make it very clear as the caregiver what is expected of you and as the person receiving care, what is expected of them so that, you know, if you’re overstepping your bounds. Make sure that the person receiving care has to give something too. All right? It’s not just like take, take, take. Now, it could be little things. It could be. You know what, hey, if you’re able to vacuum, if you’re able to handle the groceries, but make it clear that this is a partnership, it’s not just one person completely depending on the other. You know, what you can and can’t do might change over time. For the most part in my family, I buy a lot of like the groceries and things like that. I like that I’m able to provide food, make food and things because it makes me feel that, hey, I am contributing to the household. It’s not just me living in the basement, creepily skulking around the house, taking everything and not giving back.
Gabe Howard: I really like what you said about little things really matter, you know, I have a, I have a pseudo kid in my life. I have a granddaughter and they’re a young family. They’re in their early 20s. They have a two year old. They don’t have a lot of money. They’re just starting out in life. They just bought a house. Long story short, whenever we go anywhere, I pay 100% of the time. I buy dinner, I buy the putt-putt tickets, I put gas in the car because I can afford to do so. The other day, my daughter in law bought me a Diet Coke. She showed up at the house. She was running errands. She had to drop something off. And when she pulled in, she handed me a Diet Coke from my favorite place. Straw and all, exactly how I like it with the light ice. It cost her a dollar. That meant a lot to me, an incredible amount, and it meant a lot to her because she got to give back in some small way. And, you know, there was hugging. You have to understand that those things are very, very powerful, breaking that analogy into the caregiver relationship with somebody living with schizophrenia.
Gabe Howard: Find out what that is. Because it empowers the person and it gives you that hope and positivity to move forward as the caregiver. So often we’d rather just sit and think, well, I pay for everything. Well, I do everything? Well, they don’t help at all. Find those, I’m going to call them little Diet Coke moments. If you have this idea that you’re always going to be the caregiver and that they’re always going to need help and that they’re never going to contribute, you create a self-fulfilling prophecy.
Rachel Star Withers: And so many times when someone does have to move back home or need care, they’re recovering. They’re recovering from a very bad psychotic episode, or maybe they’ve just fully been diagnosed as having schizophrenia and they’re going through that. So make sure that you have goals of where do I want to be in a year? If your goal is to live on your own, and right now you can’t. If the caregiver is too overprotective and just taking over my life, I will never get to that point because I won’t know how to stand up on my own. You did it all for me. So make sure as you find objectives to help with that, as a caregiver, you know when to step back. As the caregiver, you need to watch out for some things in your own life. There’s actually something called caregiver syndrome, and that is when you’ve just kind of you’re burnt out. And you can get burned out on a job, lots of things in life, but you’re burnt out of caring for a person. And that manifests in exhaustion, anger, rage, depression, anxiety and even physical things. High blood pressure, diabetes. This is all stuff we talked about earlier. Gabe, this is like, you’re trying to help someone else with these exact same problems and now you have the problems.
Gabe Howard: Yeah, you can’t pour from an empty cup. I know that it’s a cliche, but if you are not well, what support are you providing? Sincerely, Rachel, would you want help from a person who was sleepless, scattershot, angry, frustrated, confused, annoyed? Is that the person that you want to show up to provide you what, in some cases, could be life-saving care?
Rachel Star Withers: I do not, Gabe. The stress there. Can you imagine now if I’m living with that person and it just never ends? You’re going to have to learn as a caregiver to step back, take a vacation, even if it’s just like little mini vacations during the day. Really cool. I actually was talking with this family and they had a young teenage son. He was diagnosed with childhood schizophrenia. And so he had been on antipsychotics for quite a while. And they’d definitely affected his weight. And the parents were just pretty much, they were at their wits end. You know, they’re doing so much trying to help their child. And now on top of that, they’re worrying about his weight gain.
Rachel Star Withers: So what happened? The uncle stepped in. The uncle decided that he was going to start working out with the young man. And it was kind of cool. You know, you got the cool uncle. The pressure wasn’t there. They would go out, he’d pick them up, they’d go and they would do some physical activity every single week. For one, that gave the parents a chance to take a little break from having to worry about the son, but also gave the son a social outing. And it made him feel like this isn’t something I have to do. I’m getting to spend time with my fun, cool uncle. And I love that. And that’s something like if you’re able to incorporate that, look around. If there’s other family members, be like, listen, I’m already doing this, this and this. Is there any way that you could help with one of these things? If one of your family members likes to cook? Yo, like, maybe you could make a little more. Maybe you could come over and show, like, find ways to give yourself a break as a caregiver. You can also look into assisted living situations like that. You know, don’t think that you have to do everything. Get help when you need it.
Gabe Howard: I think a lot of people are experiencing stress in the time of corona, so it’s very important to understand that no matter how hard your family dynamic tries, external factors out of your control can change things. And the whole point of this is this is why it has to be an ongoing conversation and an ongoing partnership between all the parties. Otherwise, you’re not going to be nimble enough to survive when things happen. Now, obviously, I don’t think anybody saw a worldwide pandemic coming, but nevertheless, people with schizophrenia are also managing a worldwide pandemic, as are the people who love them.
Rachel Star Withers: And we’ll be right back after a message from our sponsor.
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Rachel Star Withers: And we’re back discussing schizophrenia and caregiving.
Gabe Howard: Rachel, you got to spend time with Dr. Sarah Kopelovich, who is an assistant professor, and has done a lot of research on caregivers. She taught us things like compassion fatigue, and it was very, very cool. I loved hearing your interview. So let’s go ahead and play that now.
Rachel Star Withers: We’re here speaking today with Dr. Sarah Kopelovich, who is a licensed clinical psychologist, and she’s also an assistant professor who has been doing a lot of very interesting research into schizophrenia spectrum disorders. And today we have been talking about caretakers and the role that they play in helping different people with schizophrenia. Doctor, tell us about your research and how it deals with caregiver training.
Sarah Kopelovich, Ph.D.: Sure. So my primary area of expertise is in psychotherapeutic interventions for people with schizophrenia spectrum disorders and other forms of serious mental illness. I do a lot of work trying to increase access to these evidence based psychotherapies. And the kind of frontline intervention in that realm is cognitive behavioral therapy. In trying to increase access to cognitive behavioral therapy for psychosis, how do we leverage other members of the treatment team and the natural support team so that we can really take an all hands on deck approach to helping people get access to good quality skills that can help them cope better with the symptoms of psychosis? There is a model called Psychosis REACH, which was developed by Dr. Douglas Turkington, who also happens to be one of the co developers of Cognitive Behavioral Therapy for Psychosis that teaches family members cognitive behavioral therapy concepts and skills so that they can have more therapeutic interactions with their loved ones. We have now piloted an eight hour training in May of 2019 and it was a huge success. So we found that just through a one day training, we were able to improve the well-being, so in other words, depression and anxiety, scores of the family members who attended that one day training and there was no other intervention involved. It was just that one day in person training, correcting myths and misconceptions about psychosis, providing background, and how can cognitive behavioral therapy help improve your life and well-being and depression and anxiety? And then how can you use these skills and concepts to improve relationships with your loved ones? So we’re really excited about these preliminary findings and we’re continuing to provide this training to family members in the coming years. Now, virtually, of course.
Rachel Star Withers: That’s really amazing. So it’s just a one day training as of right now?
Sarah Kopelovich, Ph.D.: This is a one day training and it is outside of any mental health clinic. We know that our national schizophrenia treatment guidelines recommend that the care team is providing family intervention for psychosis, but unfortunately, that’s just not playing out in practice. Only about two percent of families in the United States who have a loved one with serious mental illness are receiving any kind of family intervention for psychosis. So our goal was to take this out of the clinic. And I was able to do that because I was very, very fortunate to receive philanthropic support. So we offered this training to anyone. We provided financial support for travel and lodging. We brought them all together in a beautiful space, catered and just really communicated to families you’re valued. We care about you and we want you to learn. We know you’re doing as well as you can. We want to help you do even better.
Rachel Star Withers: So why is caregiver training important?
Sarah Kopelovich, Ph.D.: Well, we know that for a long time now, families have been in the shadow of the mental health system in our country. I talked about how 98% of the time families are not brought into their loved one’s mental health treatment, and this is contrary to the overwhelming evidence. Research shows that if we can support families appropriately, we can save money, we can save relationships and we can save lives. We spend three hundred billion dollars annually on costs associated with serious mental illness. And much of that comes from hospitalization costs. Which it just so happens that family interventions like caregiver training, one of the strongest outcomes that we see for this intervention is reduced hospitalization rates and reduced number of days in the hospital. In terms of saving relationships, there’s this really interesting study about 10 years ago out of Delaware. They just asked people living in the community with a schizophrenia spectrum disorder, do you feel alone? And 90% of the people that returned a survey said yes. And yet it’s also true that 90% of individuals with psychosis are in close contact with at least one family member. Psychosis can be a terribly isolating experience. So you can be surrounded by people, and by very well intentioned people, and feel so utterly alone. And we can change that. We can help get the relationship back on track. We can improve quality of life. And then, of course, that brings me to that last point, which is that family interventions like caregiver training can save lives. So one third of people with schizophrenia will attempt suicide and one in 10 will die from suicide. When you ask about why caregiver training is important, it’s about saving families and saving lives. It’s about giving family members a very different message than they’re likely receiving, which is that they should expect recovery. That’s what the data supports, is that most people who experience a psychotic episode will experience wellness, will experience recovery, and families need to hear that.
Rachel Star Withers: Very nice, I agree on that. When I know most people hear caregiver, we tend to think of someone taking care of like an older family member. When my grandfather and my grandmother both had Alzheimer’s, I remember we kind of had to do a little caregiver training, but it really had nothing to do with the mental. How is your type of caregiver training different than, let’s say, dealing with someone who’s in their 90s like we were?
Sarah Kopelovich, Ph.D.: Yeah, well, so first I want to clarify that I’m using the term caregiver quite broadly to refer to anyone who identifies as a support person. So that could be a biological family member, a significant other, a friend. And in terms of how it differs from other kinds of caregiver training, I think the domains in terms of what it’s trying to accomplish are actually more similar than they are different. If you are the loved one or the support person of somebody who’s experiencing an episodic or potentially episodic condition, then there are some basics that we need to help you to do. One is to have accurate information about the diagnosis and to be realistic and also hopeful. And with schizophrenia and other forms of psychosis, there’s a lot to be hopeful about. Despite all the doom and gloom you might confront on the Internet or in even peer reviewed journal articles, there’s a lot of progress that is being made in the realm of psychosis, recovery and treatment. Family members need to hear that. Otherwise, they’re going to go do a Google search or they’re going to talk to a family member that has their own anecdotal experience, and it might not be positive. Right? But there’s a lot to be positive or hopeful about. Family members want and need connection with their professional care team, but also that connection with other caregivers.
Sarah Kopelovich, Ph.D.: And that’s across conditions. And then finally, I think they want resources and skills training. How do I, how do I help? What helps? And what makes things worse? They want to know what can I manage at home and what will the professionals be doing to help my loved ones recover? And then on the flipside, what in the home environment might be counterproductive to my loved one’s recovery? And what kinds of treatments might be unhelpful? There are more similarities than there are differences. But when we get a little bit more granular, a little bit more detailed, that’s where we start to see differences within the Psychosis REACH training and other kinds of family interventions. We’re going to be giving psycho education, obviously, about psychosis. We’re going to be really defining some boundaries for a training so that when we teach you these skills, our goal is not for you to do psychotherapy with your loved one. Right? That is not indicated, nor is that within your skill set. It’s really about helping you to apply some of these skills to yourself in your own life so that you could be more effective with your loved one.
Rachel Star Withers: When you’re doing these different trainings or you’re speaking with loved ones, support givers and whatnot, what are some of the common problems that they bring up to you?
Sarah Kopelovich, Ph.D.: My colleague, Maria Monroe-DeVita, conducted focus groups before we started the Psychosis REACH training and these focus groups were across the state of Washington with families who had had a loved one hospitalized for a psychotic episode. And what these families disclosed can really be boiled down to two things. They wanted skills to manage their loved one’s illness. And they said that they wished that they had had someone, and they were referring to another family member, appear to tell them, this was my experience. This is what you can expect. Here’s what worked for us. There’s something incredibly powerful about connecting with other people who have walked that path before. And then they also wanted to know things like how do I respond when my loved one is experiencing a delusion? How do I help them when the voices get really intense or really degrading? They’re referring to things like coping skills, problem solving skills, communication skills. So that’s exactly what Psychosis REACH teaches them. How do you help? What do you do in those situations? And then also how do you know when to back up? Because we also need to make sure that we are meeting people where they’re at and kind of know when to tactfully withdraw from the situation.
Rachel Star Withers: How can your loved ones know when they need to tactfully withdraw or maybe kind of step back from a situation?
Sarah Kopelovich, Ph.D.: So it’s really important to know that we cannot progress from a place of conflict. Sometimes things can escalate quite quickly or unpredictably, and you find yourself in a situation where now people are yelling. And so that’s not a therapeutic interaction, right? That’s a situation where we need to actually withdraw. You know, this is a bad time. Let’s come back to this another time. Or shift topics, right? Hey, I’m wondering if you caught the game last night. I missed it. Can you fill me in? Falling back on the relationship, going to neutral topics, getting back on the same page with your loved one. Hey, I know it’s really important to both of us that you stay out of the hospital and I can see you’re feeling really unsafe right now. What can we do to help you feel safe in this moment?
Rachel Star Withers: So many times, including my own situation, you have a support person or caregiver that’s a parent, and the person that they’re supporting is their own child, an adult child with a serious mental disorder. Not only do you have the stress of the parent child, but with that added schizophrenia and psychosis. Can you speak on that?
Sarah Kopelovich, Ph.D.: Sure, it can be a really tricky balance, right? You have a parent who wants their child to be well and can feel quite helpless and might be concerned for their well-being, for their safety, for what’s happening with their school. Are they going to get so off track that they’re going to have implications for their future? And then you have a young adult who is appropriately going through this process of separating from the parent and individuating, really becoming their own person, independent of their parent’s aspirations, their parent’s thoughts and ideas. It can feel quite stifling for the young adult to now have a parent who is taking care of them, who’s asking them about their medications. Who’s asking them about whether they’ve gone to their therapy appointment. That’s part of what we try to do with the Psychosis REACH training is to create a different dynamic. How do we change that dynamic that has started to unfold with the diagnosis or with the onset of the disclosure of the symptoms so that we don’t have so much stress and tension in the home? And this is really coming from a key finding in the psychotherapy literature where we see that that therapeutic relationship is the key to positive outcomes in therapy. So we work with the family members to identify shared goals. What’s important to you and what’s important to your child? And the way to get to those goals might be different. And usually it is, right? Usually they can both be on the same page about the fact that they want to be healthy and to kind of get back to the things that matter to them.
Sarah Kopelovich, Ph.D.: But the parent thinks that the way to do that is to take this set of medications and to throw themselves back into life as usual. And the child thinks, well, when I smoke marijuana, that’s what helps me, right? It’s not these other medications. But the goal is the same. How do we take that goal and work from there? How do we help them activate positive emotions by thinking about positive memories, by having other things that they connect about outside of just the illness. And so when we can redevelop that healthy relationship, then we can progress to other kinds of skills, like inquiring curiously. So asking and not assuming, asking good quality, curious, open ended questions about your child’s experience, about their perspective, about what they want. We can teach parents to not fear their child’s experience. A lot of that concern and that tension that’s happening is coming from a place of fear. If we can tell parents actually voice hearing is a really common experience. And there are a lot of voice hearers all over the world. And here’s what we know about what leads to distress in some and not in others. Then they feel a little bit calmer. They feel a little bit less anxious about what their child is going through. And then we can help them work on the higher level skills as well, like trying out different skills together and getting feedback.
Rachel Star Withers: Very interesting. A large part of our audience is caregivers and the support people, family that are all around different people with schizophrenia. What do you have to say to all of those people?
Sarah Kopelovich, Ph.D.: What I want to say is it’s not your fault. That if you feel like you’re not doing enough or you feel like your child or your loved one isn’t getting enough, that it’s not your fault. And psychosis is nobody’s fault. That needs to be the first message right out of the gate. Psychosis is nobody’s fault. We have a lot of wishes for behavioral health system transformation, and we know that the system isn’t doing as well as it could be to help meet their needs. So I have training in dialectical behavior therapy as well. And one of the principles of dialectical behavior therapy is this assumption that we’re doing the best we can and at the same time we can do better. That’s the message I tell myself every day. That’s the message that as a policy advocate, as a mental health professional, I communicate to mental health providers and administrators. And that’s what I share with family members as well. You’re doing the best you can. And when we know better, we can do better.
Rachel Star Withers: It’s very interesting that you said that one of the main important things is that it’s not your fault. That was just kind of really struck me because in my own situation with my parents being my main support system, I do think it comes up a lot. And I would say that for other people with schizophrenia and their support system, that our family. Yeah, that’s a big thing is did I cause this? Did I give this to my child? Did something happen under my watch to my child to cause this? And I hear that a lot. As far as like, did something traumatic happen? This is very interesting. That’s one of your main points, you’ve got to accept right away that it’s not your fault. That just when you said that, it really struck me that was very powerful.
Sarah Kopelovich, Ph.D.: Absolutely, the more we know about psychosis, the more complicated that picture becomes, because it’s really not this simplistic model of how you’ve got this set of genes, then you’re going to develop schizophrenia. There are a lot of contributors to psychosis. We used to see psychosis as this really uncommon, abnormal state. Psychosis is far more common than we used to know. And across cultures. There are the schizophrenia spectrum disorders are one kind of set of causes for psychotic experiences. But there are a lot of people who have psychotic or psychotic like experiences who don’t have a mental health diagnosis. There is not a clear formula for this, but what we do know is that it’s not any one thing.
Rachel Star Withers: It’s a very powerful point that. Definitely helps a lot of different support people out there who are listening to hear that. So how can caregivers find training?
Sarah Kopelovich, Ph.D.: In my mind, the place to start is the National Alliance on Mental Illness, NAMI is the largest mental health organization for families, been around since 1979, and it’s really become a leading voice on mental health. What NAMI provides is both a way to connect with other families and also they provide their own set of education and resources to family and caregivers. And because they are such a large organization, there’s a good chance that you’re going to have a local NAMI chapter in your region. I find their trainings are a really nice base for families who are just beginning their journey supporting a loved one with psychosis. A lot of their educational programs will teach you about some of the common terminology. They’ll talk about different treatment options for different disorders. And then a lot of families will find that they’ll benefit from more specialized training. For loved ones who struggle with a family member who doesn’t agree with their diagnosis, which sometimes gets referred to as poor diagnostic insight or something called anosognosia, for those families they might find a specialized training program is helpful. And the LEAP Foundation, which is directed by Dr. Xavier Amador, can be really informative and helpful. They have a number of offerings, a number of different trainings that they’re now offering virtually.
Sarah Kopelovich, Ph.D.: It’s kind of the silver lining to the dark COVID cloud is that so many of these trainings are now being offered via distance learning. The LEAP program uses principles and techniques from motivational enhancement therapy or motivational interviewing to really target communication patterns and to improve relationships for family members who are looking to learn concrete coping and problem solving skills and to dive deeper into their understanding of psychosis. They can sign up for the Psychosis REACH training. We had our first training back in May 2019. We got a little off track because of COVID, but we are offering now our second training. It’ll be our first virtual Psychosis REACH training. We’re really excited because of the philanthropic support that we’ve received for this training, I’ve been able to get the leading expert on CBT for psychosis, a psychiatrist named Dr. Douglas Turkington, who co developed CBT for Psychosis and Psychosis REACH, and he’ll be leading the training. And then in May 2021, we have another training that will also be virtual that folks can pre register for. They can go to www.PsychosisREACH.org to learn more and to preregister.
Rachel Star Withers: Sarah, and I understand you have some different books that you can recommend.
Sarah Kopelovich, Ph.D.: Sure, Dr. Turkington and Dr. Spencer have written a book called Back to Life, Back to Normality: Volume 2, and this outlines many of the cognitive behavioral techniques that we’re teaching to families in the Psychosis REACH training. So I highly recommend that one. That’s been a big asset to the families who’ve gone through our Psychosis REACH training in Washington. And then I have a book chapter coming out next year in 2021. It’ll be in a book published by the American Psychiatric Association called Decoding Delusions Advanced Psychotherapy Practices for the Clinician. And I’ll have a chapter in there called Supporting Families Caring for Someone with a Delusion. I will also go through the Psychosis REACH training key points.
Rachel Star Withers: Well, thank you so much for sharing all of that with us today. I know that you have definitely helped a lot of our listeners who are support family and caregivers. I know my mom, I’m definitely going to have her listen to this and check out the books and the REACH program that you spoke about. Thank you so much for joining us today on our show, Sarah.
Sarah Kopelovich, Ph.D.: Thank you so much for having me. It was so nice to be here.
Gabe Howard: Rachel, a great interview, as always. What was your main takeaway?
Rachel Star Withers: It really kind of threw me during our interview when she said it’s not your fault. I don’t know, like why that struck a chord with me, but it just kind of maybe like, I guess, peacefulness almost. You know, caregivers, a lot of times it’s a family situation. You need to know that stuff going on, a lot of it’s out of your control. You didn’t cause it. And the same thing for people like me who have schizophrenia, you didn’t pick this. This is just something you got that you have to learn to deal with. But you didn’t do anything bad. You didn’t do anything wrong. And that’s not something that we tell ourselves very much, Gabe. I think it’s easier to blame yourself for everything, whether you’re on the caregiver or the receiver end of that. It’s easy to be like, well, you know, this is all happening because I can’t work anymore. This is all happening because this person’s lazy. But you know what? A lot of this stuff, it’s no one’s fault. We just got to figure out how to deal with it. That gave me peace.
Gabe Howard: I can certainly understand why. When you start blaming people, you expect those people to fix it. If I say this is Rachel’s fault, well, then I can just sit back and do nothing except be angry that Rachel is not fixing it. And the reality is, is if it’s nobody’s fault, then that gives Gabe and Rachel an opportunity to work together to assess the situation, find the problem and fix it. And the fixing it is what we want. I’m angry because I’ve blamed Rachel and she’s not fixing it. That manifests itself as me being angry at Rachel, but in reality, I’m mad at the problem that’s not being fixed. And I’m placing the blame not on the problem, but on an individual. That spoke to me a lot.
Rachel Star Withers: Absolutely right, Gabe, and a lot of this keeps coming back to one thing, communication. Make sure that whatever the situation is between the caregiver, the care receiver, talk, make a plan, define the roles, what is expected of each person and reexamine them depending on if I’m doing better, if I’m doing worse. If I don’t need you to help me get dressed, don’t do that. All right. However, I could be sick one day and I haven’t showered in a few days, and you might have to help me. So be up front, reexamine the roles, know what’s required of each person. That way you don’t have to, like, step on toes. And to my fellow schizophrenics, check in, let people know how you’re doing. I’m really bad at this, OK? I won’t tell people I’m having a hard time until it’s really, really bad. And I don’t need to do that. I need to speak up. But it’s awkward sometimes. Just to be like, oh, hey, just so you know, I’ve been hallucinating a lot. I don’t know, I’m bad about that. But we need to step up, you know, let the other people know when you need help or especially if there’s signs that you notice that you’re going into a psychotic episode. Give them a heads up. Hey, by the way, this has been happening a lot. If you could just kind of watch me a little bit closer. We all need caregiving in some way during our lives, you know, we need to take care of each other, whether you are a family member or a close friend or even a neighbor or let’s say you signed up for a program and this is a stranger and you’re stepping up. That’s awesome. But know that you’re appreciated and make sure to treat each other with dignity and respect. I’m Rachel Star. Thank you so much for listening to today’s episode. Like, share, subscribe, pass it around to all of your friends and we will see you next time here on Inside Schizophrenia.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail [email protected]. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.
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