Inside Schizophrenia Podcast: Involuntary Treatment Options

Guest Bio & Inside Schizophrenia Podcast Hosts

Nicole Drapeau Gillen is a caregiver and the author of “Schizophrenia & Related Disorders: A Handbook for Caregivers.”

Nicole began her journey as a caregiver in this world of schizophrenia in 2020 when her daughter became sick. After thrashing about for a few years, finding herself frustrated and desperate for information, she wrote the book on caregiving for someone with a serious mental illness.

In her book, “Schizophrenia & Related Disorders: A Handbook for Caregivers,” Nicole addresses a myriad of issues caregivers face, including:

• From the Beginning of the Journey: Treatment — medication primer, treatment primer, etc.; hospitals, case managers, and more; and doctors (working with, talking to, finding)

• Ongoing: Communication, definitions, family and friends; support groups — for yourself and your loved one; and creating your ongoing paper trail

• Could Happen Anytime: Housing/homelessness; navigating jail and police; and crisis — suicidal ideation, arrests, run away, etc.

• Getting The Right Support Setup: Legal — advanced directives; legal — power of attorney, conservatorship, guardianship; and financial — SSI, SSDI, other government services

• Long-term issues: Budgeting — estate planning, trusts and letter of intent; and transition to self support for your loved one

• And so much more!

As a caregiver, our journey is ever-evolving and fluid. No sooner do we get our loved one on a good path, then things take another twist and turn. This book aims to give you the fundamentals on how to help your loved one no matter where they are on their road to recovery. With clear steps and compassionate insights, you’ll find a lifeline in your caregiving journey.

https://schizophrenia-caregiver.com/

Schizophrenia & Related Disorders: A Handbook for Caregivers

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.

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 Media podcast. I’m your host, Rachel Star Withers, here with my incredible co-host, Gabe Howard. Treatment for schizophrenia is a tough journey for patients, but also for caregivers and loved ones. Due to cognitive symptoms and hallucinations and delusions, a person with schizophrenia may not be able to make decisions on treatment or take care of themselves. When should caregivers step in to legally take control over a person with schizophrenia? What are the types of involuntary treatment? What are the other options available to people with schizophrenia and caregivers? Joining us today is Nicole Drapeau Gillen, who is a caregiver and author. She was a mother who recognized that caregivers like herself often find themselves thrust into challenging, complex and stressful situations with little guidance on how to help a loved one with a serious mental illness. Her goal was to create a practical and actionable handbook that offers valuable insights into caring for your loved ones who have schizophrenia. It’s titled Schizophrenia and Related Disorders: A Handbook for Caregivers.

Gabe Howard: This is obviously a complicated issue. I suppose the curiosity comes in for me. When is it reasonable for somebody to step in? I mean, you live with schizophrenia. When is it reasonable for somebody to decide that they should, well, essentially force you to do things against your will?

Rachel Star Withers: Let’s talk about the ethics of it, because it’s easy to just say, well, when they can’t take care of themselves. What in the world does that mean? Because you taking care of yourself, Gabe, and my version could be two completely different things. When it comes to the ethics of involuntary treatment, they’re actually the same for psychiatry as they are any other medical specialty, meaning that when individuals have a severe or life-threatening illness, they can refuse treatment, but only if they’re in a normal state of mind to do so. For instance, if I have cancer and I decide I no longer want to undergo chemo, I can make that decision and there’s nothing my family can really do. If I’ve made that decision that I’m tired of treating it this way. The issue comes in the psychiatry side because that whole normal state of mind thing. If I have schizophrenia and I am refusing help, you can argue that, well, Rachel, you’re refusing it because you have schizophrenia. You don’t have the state of mind to understand what’s happening to yourself. And that becomes very hard for me to, to argue against. I even, Gabe, I have to say, like I don’t personally, I feel like I know where that line is, where I lose the rationale. But in the moment, I sure don’t know where that line is. And also, you could be listening to me talk and I’m thinking I’m 100% rational and you think, no, Rachel, you are not. And we disagree on it.

Gabe Howard: One of the things that I always think of, though, is that people say lots of irrational things.

Rachel Star Withers: Yeah.

Gabe Howard: I mean, for example, we hear about conspiracy theories, like the Earth is flat, or we hear about people who say, well, I can smoke three packs of cigarettes a day and nothing bad will happen to me. I have a grandfather who lived to be 107 and ate nothing but bacon, and that’s irrational. We’re never discussing involuntary treatment for people who believe in those things, who believe in conspiracy theories, or who won’t accept basic medical information.

Rachel Star Withers: But we change that to schizophrenia. And let’s say that one of the medications is making me sick to my stomach, and I’m constantly throwing up and I decide I no longer want to take that medication. And you pretty much step in and say, no, Rachel, you don’t have that right. You have to stay on that medication. You can’t be trusted. You need to be forced to take this. It’s scary for people with the disorder, and it’s scary for your loved ones because there are two sides to this and both have good points. Many times it’s the person with schizophrenia that we aren’t heard. And it can be very frustrating even when the other people in the situation only want what’s best for us.

Gabe Howard: I like what you said about both sides have good points. A lot of times when this is discussed, it’s always discussed from this side is right and this side is wrong. And I think it is much more nuanced than that. How do we wade through that nuance, Rachel? Because society doesn’t do well in gray areas. What society is looking for is that this is correct and this is incorrect. This is moral, this is or immoral, this is ethical, this is unethical. And we haven’t really established where those lines are in this particular conversation.

Rachel Star Withers: What’s scary is that when you actually learn what some of the lines are, they’re not exactly what you think. To understand that when we’re talking about taking over legally, for someone taking over control of another person, essentially that other person has to be seen as gravely disabled, meaning they can no longer take care of themselves. That means they can’t cover their basic personal needs for food, clothing or shelter due to a mental disorder like schizophrenia. A lot of people want to jump the gun on that and be like, well, yeah, they can’t do this. They can’t do that. Look at them. They’re living in a shelter. They’re panhandling. Whoa whoa whoa whoa. If they’re living in a shelter and they’re panhandling, let’s say they’re able to get food at a homeless shelter, let’s say, then they’re actually still taking care of themselves. I know a lot of loved ones and care givers want to jump in and be like, well, no, no, no, they’re homeless. Depending on what area you’re in, that person might not qualify yet as gravely disabled All of this can be very difficult to accept as a loved one,

Gabe Howard: In the spirit of this is not black or white. It’s like a small home, right? If you live in New York City, a small home could be 100ft², and in fact, a 1200ft² home would be gigantic because New York City is just known for, well, frankly, tiny apartments. If you live in the Midwest, 1200ft² would be considered small. So it’s a very it’s a moving target is what I’m saying. And we also have to decide where are we going to intervene. I mean, for example, if somebody doesn’t take their medication for one day, does that give you the immediate right to say, nope, involuntary treatment, taking all of your rights, everything that we say because you missed one pill. And then how do we even decide if you missed it or skipped it? That that’s a big debate in this. Well, I know when they don’t take their medication, that’s a problem. And they didn’t take their meds this morning. So boom, I now have all of their rights. How far down the chain of like an analysis do you have to go? I think many people would hear missing one dose is not enough to do it, but many people would hear, well, your loved one is homeless, so now we can absolutely get involved. Okay, but now where on that spectrum between those two points, is it reasonable? Because many people listening are like, well, you got to get involved before they’re homeless. Why would you wait until they were homeless to get involved? Okay. But at what point is it up to you versus up to them? When are you ready to take that? You know, when are we when are we ready to take people’s rights away? We’ve got to call it what it is.

Rachel Star Withers: Mm-hmm.

Gabe Howard: When are we able? When are we willing? When is it moral? When is it ethical? And of course, when is it legal to step in on behalf of somebody? It’s a complicated question, as we’re discussing right now.

Rachel Star Withers: And most of the country watched as the whole saga unfolded with Britney Spears, where she was under conservatorship and had so many of her rights taken away. And, you know, none of us were in the original courtroom or know kind of what went down for that to happen. But it is hard to look back and be like, well, wait a second, how did they prove that she was gravely disabled to be able to take over those rights for her? And it’s a touchy subject.

Gabe Howard: I’m really glad that you brought up Britney Spears, Rachel. And for the listeners, I don’t want you to focus on whether or not her mental illness incapacitated her. I don’t want you to focus on whether or not she needed a conservatorship. This woman was rich, famous, wealthy, and very much in the public eye, and it took her years to get a court date to tell her side of the story. People have this idea in their mind that if you are under forced treatment and I’m making air quotes or under assisted outpatient treatment or under a conservatorship or involuntary treated, etc., that there’s all these safeguards in place that all you have to do is say, hey, look, I’ve regained insight and I would like control of my life back. And immediately, within 24 hours, you’re in front of a judge sharing your side of the story. Again, think of Britney Spears. The entire world was watching and it still took years for her to get a day in court. It’s reasonable that people should be able to share their side when you are taking their rights away.

Rachel Star Withers: One of the most important tools is going to be keeping some sort of medical journal on the person with schizophrenia. This means if you are the person with schizophrenia keeping and I’m always on this about documentation, document things. Know your symptoms, write them down. Write down when you have a psychotic episode. Did you notice any warning signs before? After? How long did it last? For the caregiver, for the loved ones, you need to do the same thing. Document. What were they like before? When did this happen? Have a journal entry for each psychotic episode that you are aware of. Include dates. If you know that they were taking their medication, if you know they weren’t. If you happen to know the types of medications they’re on, whatever kind of info you can list, list specific symptoms and keep up with things like where is my loved one currently living? Are they in an apartment? Did they get kicked out of their apartment? Are they at a care facility? Are they living with you sometimes, and sometimes they’re on the street? Be specific because when you have this it helps build that case of are they able to take care of themselves? And as a person with schizophrenia it helps build your case.

Rachel Star Withers: Also, whether you’re trying to fight this or you also are trying to get help like, no, I need help in a hospital, I need a hospital stay. Having this information helps make that case. People wonder which side of the discussion am I on when it comes to involuntary treatment? Am I for it or am I against it? I’m both, because it depends on the situation and the person. You know, right now, if my parents were to come down here and rip the microphone away and send me to a hospital, I might object and be like, I’m fine, look at me. I’m recording a podcast with Gabe. I, I don’t need help right now. However, next week I could be in the middle of a psychotic episode. And let’s say I am a danger to myself or others and they need to step in. I’m for the scenario on either side because I wish I could be like, hey Gabe, I’m going to be fine and I don’t need this. I’m not sure. And I have to place a lot of trust into the people around me that they’re going to be able to know when to step in.

Gabe Howard: And there are the key words there, trust in the people around you. Whenever this debate comes up, we always assume that the people who are around people with schizophrenia are loving, caring, ready, willing, able, and wanting to sacrifice for their loved one. And that does describe many people. And in fact, when we look around the advocacy circles, that describes everybody, because

Rachel Star Withers: Mm-hmm.

Gabe Howard: The people that have ill intent, the people who are also sick.

Rachel Star Withers: Mm-hmm.

Gabe Howard: The people who have their own agendas, they’re not in the advocacy circles. They’re just taking advantage of the laws the way they’re written. Unfortunately, more times than not, in these discussions, the picture that is always painted is the extremely connected and loving family who is very educated about schizophrenia, who is very deeply concerned and involved and is ready, willing and able to step up. And the person with schizophrenia is always painted as manipulative, unaware, unwilling, lacking insight, problematic, dangerous, scary, a danger to themselves. And then we start filling that in with, okay, well, remember that that that mass violence situation. I bet that person, you know, they always said the parents knew, the parents knew. And we’ve got to be careful on those stereotypes because they don’t hold up 100% of the time. And that, of course, contributes to stigma, this idea that all people with schizophrenia need to be watched. Otherwise something bad is going to happen to themselves or others.

Rachel Star Withers: The best treatment is, is going to be voluntary treatment. And that’s just the truth. Involuntary treatment needs to be that last option. Try and talk to the person with schizophrenia and you might not be the person to talk to them. You might have to be like, wait a second. If our relationship is always combative, if they only see me as, let’s say, their mother, they’re not going to be able to see me as objectively trying to help them. You might need to have somebody else that they’re close with say, hey. Bring in a third party and let’s talk about what’s happening. Let’s talk about the two views. The person with schizophrenia may be like, look, I think I’m living fine. This is how I want to live. These are the choices I want to make. And the caregiver can be like, well, I’m worried because of this, this and this. Sometimes that third party is what helps both sides see clearly. Ideally, voluntary treatment is what you want, even if it’s as simple as, hey, let’s just schedule the doctor’s appointment and we’ll go from there. However, when that’s not an option, the main one that we tend to hear about is called a 72-hour mental health involuntary hold, sometimes called a 5150. To get a 72-hour mental health involuntary hold, one of three conditions must be present. Number one, the person is a danger to themselves. Number two, the person is a danger to others, or three, they are gravely disabled.

Rachel Star Withers: That means they are unable to provide basic personal needs, food, clothing, shelter. And then what? What happens? It’s not like 72 hours. Okay, I’ll see you. I’ll pick you up here. They could be released before 72 hours. The goal is that a professional talks with the patient, does an evaluation and determines should they be released? Should they have help for this 72 hours and be watched? Or should the person then be put in a 14-day involuntary hold for more treatment? Kind of the same thing happens at the end of 14 days. After you’re evaluated, you’re talked with. They see should this continue on another 14 days or should the person be released? It’s a scary thing to think about being forced into a hospital, and then the fact that on the caregiver side, you really don’t know how long it’s going to last.

Gabe Howard: Hospitals are scary.

Rachel Star Withers: Mm-hmm.

Gabe Howard: They’re traumatizing. Now, I’m not saying that that means that you shouldn’t go there. I’m not saying that at all. I think if anybody reasonably thought about this, if you were in a car accident, had a heart attack, fell off the roof and you were squadded to the hospital, that would be terrifying. You would be scared. Remember, I didn’t say anything about schizophrenia. I just said, you’re going to be admitted to the hospital and you’re terrified. So you can imagine how scary it’s going to be with somebody living with schizophrenia. And we don’t really seem to understand how traumatizing that can be. And in fact, we often ignore that trauma. So then they do everything they can to get their freedom back, to escape.

Gabe Howard: And these are the words that people use. I had to escape, I had to escape, I had to escape. And then the next time you’re like, hey, I really think that you should voluntarily get some treatment No, no, no, I don’t want to go back to there. That was terrifying. The thing that made it terrifying was not the treatment, but was their lack of agency, their lack of control, their lack of ability to be heard and seen, and the fact that they were infantilized and treated so poorly. They associate everything together. I really worry about this because I don’t think people understand that an involuntary treatment comes with a trauma, and we’ve got to weigh the pros and cons of is it worth it? Voluntary treatment is your best bet because that’s what will last. You want your loved ones to be making good decisions when nobody is forcing them to, and that may be a little bit of a longer game. You may have to be a little more patient. You may have to wait for a little more rock bottom.

Rachel Star Withers: This begs the question, then, what are my other options? Is there an in-between ground? Is there a I can be like, kind of over the person and not at the same time? We’ve mentioned it on the show before, but there is something called psychiatric advance directives. To learn more about those, you can actually go to the National Resource Center on Psychiatric Advance Directives, NRC-PAD.org. And what those are a relatively new type of legal tool. And it’s a document that says when a person’s specific instructions or preferences regarding future mental health treatment. I think everyone with schizophrenia should have one of these for what could happen. Even if you are like 100%, Rachel, I’ll never need this. It’s good to have on hand because basically it says, should I mentally not be able to make certain decisions, this is the type of treatment I want. This is the doctor I want to go to. This is the hospital. These are the type of treatments I consent to. This is the person I want to be over my things while I’m in this state. I wish that I could be like, hey, you know, when you start to have a psychotic episode, it’s really easy to fill these out, but this is something you have to do ahead of time. It’s good to have this on hand. It helps for the family also, and to kind of talk to your family because somebody you think, hey, this will be the person to step in, they might not be able to and kind of give them a heads up and be able to talk about those who are closest to you. What do y’all think my best options are? For me, it’s a weight off your shoulders. Should I get sick, should I not be able to mentally take care of myself, here’s what’s going to happen. It’s like a safety net.

Gabe Howard: One of the things that I think about, Rachel, is the worst time to have a fire drill is when the house is on fire. Oftentimes, we never want to discuss these things until a crisis is happening. We don’t want to have these conversations with our loved ones until they are in crisis. We need to do this with schizophrenia. If you live with schizophrenia, you want your wishes honored and you want to be able to think about it with a clear mind, and you want to be able to tell your loved ones what you want so you don’t have to be angry with them. For our caregivers, I genuinely, in my heart, believe that you want what’s best for your loved ones, and if you talk to them ahead of time, you can literally be their. I want to say cheerleader, but it’s more than that. You can be their emissary. You can literally say, this is what my loved one wants. And here is the legal document that proves that you have to give it to them. Again, have to give it to them within the confines of law. Right. You can’t write anything down and it works. But it’s not a magic document, ladies and gentlemen. But that way when you’re arguing, when you’re making the decisions, when you’re fighting for your loved one, you two are on the same page.

Rachel Star Withers: And it’s hard because on one side, Gabe, I’m the person with schizophrenia. So, I tend to be a little on edge about the caregivers coming in and taking over. But I also helped take care of my ailing grandparents, so I know from that side. Oh, I used to get so annoyed with them. And I love my grandparents, obviously. But yes, sometimes you’d just be like, just, just let me just let me do it this way. It’ll be so much easier if I can just fix the breakfast, do it this way, then move on. And they’d be like, no, no, no, I wanted this. can be frustrating on both sides. Caregivers need help also. One of the most important things, know your limits, especially if you are a parent caregiver. A lot of times you set very unrealistic expectations of the support you can provide. You think I can take care of them no matter what. And, an adult child with schizophrenia? You might not be able to take care of them. Realistically, you have to look and say, what support can I provide? Am I able to protect this person? Am I able to keep them out of danger? Am I able to keep myself out of danger in this situation? Seek out resources.

Rachel Star Withers: There are resources out there. If you’re able to go to the doctor with them, go to the doctor. Talk to the person, say, hey, how much of the medical side can I be a part of? Join a support group. Join a support group for caregivers. That will be one of the biggest backbones. You will learn so much from other people who have been dealing with this, who have been dealing with other mental disorders, and some of them might have gone through something that you have yet to go through, and they will help you on that. And practice your own self-care strategies. Being a caregiver a lot of times is like being a superhero. And you think, well, yeah, I can take care of all of it. I can take care of my loved ones. I can be the hero and all that’s true. But you also have to take care of yourself because everything falls apart if you aren’t taking care of yourself.

Gabe Howard: I know we’ve covered some of this, Rachel, but are there any quick things that people can do to prepare for crisis? Any easy hints and tips that you can offer?

Rachel Star Withers: The advanced psychiatric directive is great, covers a lot of ground, but let’s say you cannot get the person with schizophrenia to even sit down and look at that. We need something just a little bit simpler. How about the name of the physician that they want to go to, the name of the hospital? What is their current doctor? What is their current medications? One thing is you want to make sure that you have just a little quick emergency plan. This is the medication they’re currently on. This is the doctor. They’re currently saying ideally this is the hospital, that they can go to. Names of family, friends who can handle kind of stuff going on if, you know, they got a dog. I’ve heard so many crazy things, Gabe. I heard about one lady who refused. She was had a heart attack and was refusing to go to the hospital because she was worried no one would take care of her dog. Her life was in danger, but she was worried about someone feeding her dog. And that’s silly to think about. But at the same time, those might be the things that are scaring the person. They think, I can’t go get treatment. I’m afraid if I go to the hospital and I’m there for two weeks, no one will take care of XYZ. No one will call my job. Little things like that. Just knowing ahead of time, hey, your sister so and so, she’s going to call your job so and so is going to come pick up the dog. Like you don’t need to worry. Just those little things like that, it might be the thing that helps the person be like, okay, yeah, let’s go get treatment. So very simple. Just a small emergency plan that you’re ready to go.

Sponsor Break

Rachel Star Withers: And we’re back discussing involuntary treatment for people with schizophrenia.

Gabe Howard: Obviously, this is a lot. Wouldn’t it be great if there was some sort of handbook, Rachel?

Rachel Star Withers: Yes. And that is why we have our amazing guest coming up, Nicole Drapeau Gillen, who found herself in this situation as a caregiver suddenly and realized she needed a handbook. She did not know how to deal with all of this stuff going on. How in the world do you suddenly take care of a child with schizophrenia? As she researched and went through this journey, she started to put together a handbook for other people in this exact same situation.

Gabe Howard: And, Rachel, you discussed that handbook with her, along with so much more. So, let’s go ahead and play that interview now for our listeners.

Rachel Star Withers: Today I’m speaking with Nicole Drapeau Gillen, who is an author and a caretaker of someone with schizophrenia. Thank you so much for joining us, Nicole.

Nicole Drapeau Gillen: Thank you so much for having me, Rachel. I really appreciate being here today.

Rachel Star Withers: Now tell us a little bit. When did your journey with schizophrenia begin?

Nicole Drapeau Gillen: Oh, gosh. My daughter had just graduated from university in Scotland. She’d gone to University of Edinburgh, had moved to Glasgow with some of her mates and was off and I thought, you know, had flown the nest and was doing big things. And about six months later her roommates contacted me.

Rachel Star Withers: Mm-hmm

Nicole Drapeau Gillen: And they were worried. We didn’t know what was going on. I was trying to diagnose it from Virginia, and after about a month of not successfully making any progress, I said, okay, I’ve got to fly there. And essentially put her in a hospital there for a few days to try and stabilize things and then shut down everything. I made her shut down her apartment, quit her job, put herself in storage, flew her home to start the treatment path. And quite honestly, Rachel, when I started on this journey with her, I didn’t, no one said the word schizophrenia. They said psychosis

Rachel Star Withers: Mm-hmm.

Nicole Drapeau Gillen: And I didn’t know what that meant. I didn’t know what was happening. But her younger sister had struggled with anxiety and depression and things like that. So I thought I knew mental health. I thought I understood doctors and medication, what one needed to do. And I learned so quickly that in the United States in particular our mental health care system is so broken and so unwilling to help someone who is not in their right mind. Doctors wouldn’t talk to me because she was over 21. Medications became a problem because doctors were just flinging at her, and she wasn’t sick enough sometimes to be hospitalized, and doctors thought she was too sick for them to treat her out of the hospital. So she was in this gray zone. And just kept getting angrier and angrier at how ineffective I was and how I couldn’t get my hands around what I needed to do to help my poor child who was crumbling in front of my eyes. And it took me about two years to get my footing, and she had a couple of hospitalizations. And then I started to just collect information. And what started as a Google doc eventually found its way into a book.

Nicole Drapeau Gillen: But the reality was, as a caregiver, and I’m learning this is not just in the United States. This is a global problem that as a caregiver of someone with a serious mental illness, that until I put it all together in one place, it didn’t exist in one place. Which meant that if you had questions about housing or homelessness, or maybe your loved one got arrested, is in jail, or maybe you’re worried about disability or insurance, or maybe you’re trying to figure out how to talk to doctors and deal with hospitals. The list goes on that the only way you could find out was through support groups, was through back-end chatter with people, maybe on a Facebook support group or whatever it was. But it’s like you’re looking under a thousand rocks to find that one little magical key. And it’s been four plus years at this point and we’re finally getting some footing, but it’s, it’s been a road.

Rachel Star Withers: Mm-hmm. Now your work background, you actually have 35 years in the business world. A former IT executive and chief marketing officer. Coming from that background into dealing with this side of health care, what surprised you the most?

Nicole Drapeau Gillen: In the business world, you can sit down with someone and you can talk about the problem, your ideas for the solution, how you move forward, how you how you navigate a situation in this world. It’s not that at all, because you’re often dealing with health care professionals who, even though they don’t, might not have all the right information, still a pretty solid in how they think about things. And so trying to get them to move off a position and how to get information and how to collaborate, and how to have doctor A talk to doctor B and actually coordinate care, etc., etc. I was just shocked. It’s not, even though it’s business, weirdly enough, in the United States in particular. Right? Health care is a business.

Rachel Star Withers: Mm-hmm.

Nicole Drapeau Gillen: It’s not a business. It’s this very tight lipped, shut down unhelpful set of things. And, and that’s I think a lot of it was set me back because I thought, well, I’ve spent my entire career negotiating with people. I know how to do this. It turns out I did not at all.

Rachel Star Withers: Speaking of the negotiation, how did that work with your daughter? Because you had multiple struggles here with hospitalization. Did you find that that negotiation that worked in the business world also didn’t translate with your daughter?

Nicole Drapeau Gillen: Oh gosh. No.

Rachel Star Withers: [Laughter]

Nicole Drapeau Gillen: And honestly, it never worked with her. I mean, she was, she’s always sort of had her own mind. And negotiating with somebody who has a very singular stubborn mindset is enormously difficult. And then when you add in psychosis and hallucinations and delusions, and her psychosis for two years was insidious because it was fun. She was having a ball in her brain. Her brain had created this image that she was on a TV show, and she was the most famous person in the world, and life was grand. How do you get someone to, to understand that that’s a sickness?

Rachel Star Withers: What’s been one of the most frustrating things about navigating schizophrenia as a caregiver?

Nicole Drapeau Gillen: Well, so, a lot of other mental health issues, it can be a lot more of a not necessarily completely straight but more straight-line progress. You go from A to B to C to D and you progress forward. And yes, there might be setbacks and step sideways and things like that, but you can see the linear projection and I’m a mathematician by education. So I think that way. But with schizophrenia it’s this wibbly wobbly forward up, down, sideways, backwards, upside down. Like you just never know what’s going to happen the next day when you wake up, which is, as a caregiver, almost also crazy making because you just never know. Do I have footing? Have I gotten her to the right thing? Is she on the right medication? We’re seeing the right doctor? And that forward, backward unable to get that footing is part of what makes it even more difficult for caregivers when we think we’re doing the right thing and all of a sudden all goes completely haywire.

Rachel Star Withers: In your book, you cover a lot of different issues, including it could happen at any time. And that covers scenarios like homelessness, arrest, running away. How in the world do you prepare for potentially anything?

Nicole Drapeau Gillen: You don’t. That’s just it. And so as a caregiver I’m on edge and I’m checking in. Have you taken your meds? What about this? What about that? Uhm. You have to do a baseline education of all the possible scenarios. You have to have an awareness of homelessness. You have to have an awareness of housing. You have to have an awareness of these kinds of things. Because when it happens, whatever it might be. You know, I’ve befriended many people in this community at this point, and I’ve spoken to some people who’ve had this illness ten, 20 years and then still boom, all of a sudden something happens and things go sideways. And for their caregiver, all of a sudden they’re caught flat footed. And that’s again why I needed to put it all in one place. And so I thought, well, if I can at least give people a base understanding of the kinds of things that might be possible in their state, that if something does all of a sudden, fall apart, they, they can immediately pick it up, look at it, and go quickly, because that’s the other thing. You have to go from 1 to 100 miles an hour oftentimes and when it happens, you’re going to have to jump and be ready.

Rachel Star Withers: A topic that comes up a lot with caregivers is involuntary treatment. What have been your experiences

Nicole Drapeau Gillen: Hmm.

Rachel Star Withers: With that?

Nicole Drapeau Gillen: Thankfully, we’ve only had to personally go down that road once. And so I had to get her to the hospital. And that was her one and only, thankfully, involuntary treatment. And, you know, it’s funny, for her at least, is that she would have moments of lucidity, of an awareness of, oh, yeah, I guess I am sick. And then she’d come home after she was on medication and that that awareness would slip. And it was like sand through your fingers. And I couldn’t figure out why. Like why she got this on Sunday. Now we’re on Wednesday and it’s all gone. The involuntary treatment was a godsend because it got her on some medications. On the other hand, because our hospital systems kick patients out so quickly, she really wasn’t stabilized. She really wasn’t where she needed to be, which is why things fell apart again. And that’s why I address a ton of that in the book around what are all the ways to try and keep your loved one in a hospital setting as long as you can, so they can get as stabilized as possible?

Rachel Star Withers: Talk to us, what are some of those options about trying to keep a loved one in the hospital as long as possible for them to get stable?

Nicole Drapeau Gillen: First and foremost, your loved one gets in the hospital day zero. You are finding out who that case manager is going to be, and you are befriending this person. You are making sure the hospital is equipped with all the information on your loved one. You produce, for example, a one-page summary. This has other hospitalizations on it. It has information on the kinds of medications that they’ve been taking. It has information on patterns of behavior, symptom symptomology that you’ve seen, all of it. It also has an extended understanding of who the patient is. And this could be a two, five, ten-page document of the history of what’s happened. You make sure that is faxed over to the hospital; you make sure the case manager gets that information. You talk to the case manager about that information. You make sure that they become that advocate with the doctor and the and the staff that you can’t be. You know, it sounds ridiculous, but you send over a picture of your loved one before they had the illness. So they can look at it and they can all of a sudden realize this is a human.

Nicole Drapeau Gillen: And I know that sounds ridiculous to say, but the problem is, is the hospital sees the sick person, and the sick person doesn’t often look pretty, right. The illness has caused them to deteriorate physically in many, many ways. Their hygiene. They’re not brushing their hair. They’re not washing their face. They’re not brushing their teeth. All these things have slipped away. And so they don’t know this is not the person pre-disease. So if anything, it’s that case manager number one. Number two after you’ve given them all the medication, then number three, now you’re looking at the future, now you’re looking at, okay, my loved one needs to be here far more than three days or a week or two weeks because of all these patterns of behavior, because of all these in and out hospitalizations. And you start to build a longer-term plan and you start to negotiate with that case manager and the doctor together about how long you can keep your loved one in that hospital. It starts day zero and it starts with the with that case manager and the documentation.

Rachel Star Withers: Like you said, with your daughter, she would go from being delusional to then having her mind back, and then it’s starting to slip again. I think that’s one of the scariest parts with schizophrenia. And when we’re dealing with all of this is that, yes, you can go from not being able to take care of yourself to mentally sound sometimes within a few days. And I think that’s what’s scary also for people with schizophrenia, because we can take care of ourselves but then lose it very quickly. As the caregiver side of this, what are your thoughts on that?

Nicole Drapeau Gillen: It just, it just fills me with dread for my baby. It scares me. It scares me because I. I’m almost 60. I don’t know how many more years I have left on this planet. And if I’m not here, what’s going to happen if these delusions come back? She’s thankfully in a good place now because the medication she’s taking. But all bets are off, all bets are off. So I’m spending a lot of time thinking about estate planning, thinking about special needs trusts, thinking about all the kinds of things that might be there as a support for her, and that how can I build a community around her in case it happens again? And I often talk about the framework, the infrastructure required. And I think unlike other illnesses, this is why, particularly with serious mental illnesses, that support system is vital. Not just a singular caregiver, but everyone that you can construct around your loved one who has this illness because you just never know when things are going to go sideways. And so everyone needs to understand it. They need to be briefed on definitions, anosognosia or positive symptoms or negative symptoms or cognitive symptoms. Things that I can roll off my tongue now because I’ve said them a million times. But would my mom, my brother know it or my cousins know? Absolutely not. And it’s that infrastructure that I think is really critical. While I encourage her fully to try and go after her goals.

Rachel Star Withers: How has it worked with your adult daughter to balance that I’m her mother, but also I’m her caregiver? How does that work in your relationship dynamic?

Nicole Drapeau Gillen: So, what I realized was she needed the big goal. And so I sat her down one day and I’m like, what’s the big goal? She said, I want to go back to Scotland. I said, all right, how about I work with you to put together the plan to make that happen? And that plan will include month over month responsibilities, and I’ll take a stab at it. And if you like it, then we’ll go with it. If you don’t like it and you want to change it, then let’s modify it so it becomes your plan. And every month you need to do these things. And if you don’t, which is fine, it just means everything moves back a month. And so right now it’s a three-year plan. Might end up being a four-year plan or a five-year plan. It could be. But it’s all up to her. It’s all the power is up to her in terms of sticking with the plan as it is and modifying it as required.

Nicole Drapeau Gillen: We do that together. So that way, my caretaking role right now is about really making sure we’re on top of things with doctors and medication and that kind of stuff. While she’s focused on the healing, and she’s focused on trying to deal with her enormously difficult negative symptoms and that is her main focus. But you know what? Later this year, she’s going to be taking on more of the, for example, setting up her blood draws or setting up her medication for the week or making sure she’s got her next appointment with the doctor, all of that kind of stuff. She’s going to be more and more and more taking it on, and I will hopefully be taking less and less and less of a caregiving role. And part of the conversation I had with her was, all right, sweetheart. I’m doing it all right now, and I’m okay with that. But my guess is over time, you’re not going to be okay with that. You’re going to want to be able to do this. You’re going to need to be able to do this. So, let’s figure out a way that I can release the reins so you can get there. But if you stumble, I’m here, I’m your net. And I will always be your net.

Rachel Star Withers: That’s beautiful. I like that that right there. I think so many times caregivers want to just step in and take control and keep control, just like, well, no, not once I get control, you know, you’ll see you’ll be happier. But it is. It’s that sharing with the person with schizophrenia that I’m here for you. What advice do you have for caregivers who are in this exact situation right now?

Nicole Drapeau Gillen: Number one, there’s a lot of things to consider, but these are probably the half a dozen most important things. The first one is talk to everyone you can. Support groups, doctors, caregivers case managers, social workers, anybody you can get your hand on, talk to them. They will give you their perspective on the situation. Along with that, get informed. Read as much as you can. In many of these support groups, there’s lots of articles that get posted but unearth every possible piece of information that, that that might apply to your situation. Another one is, don’t get ahead of yourself. Particularly as parents, we are looking at our beautiful child’s future and we’re thinking, but Johnny or Susie was on track to do X, Y or Z, get their PhD in math for my daughter, get her PhD in sociology. What am I going to do? What about this? What about that? Don’t get ahead of yourself. The disease is so fluid as we discussed. You always need to operate based on what you see literally today, not what might be necessarily around the corner tomorrow.

Nicole Drapeau Gillen: Get aligned with your loved one. They ultimately need to become your partner in their road to recovery. You can’t make them do it without their agreement. And this comes back to so many of us caregivers, and I know I’m guilty of it. I can be enormously controlling, but at the end of the day, if she’s not on track with me, she is not going to be compliant. Join support groups. Join the kinds of support groups that are going to align with where you’re at, and the kind of dialog that’s going to be important to you. And I say the last thing for any caregiver out there. Get your own therapist if you can. Because they’re not only going to help you process your own feelings, but they also might help you understand what you’re seeing in your loved one. They might be able to give you language so that when you’re now dealing with your loved one’s doctor, that you might be able to communicate with them even more effectively.

Rachel Star Withers: How can our listeners learn more about you and your book, Schizophrenia and Related Disorders: A Handbook for Caregivers.

Nicole Drapeau Gillen: The book is on Amazon. I also have a website, schizophrenia-caregiver.com. I’m also on Facebook, it’s Facebook/SMICaregiver. And those are probably the two best places to reach me. Yeah, and I just want to encourage anyone out there that either buys my book or is in the throes of this. If you reach out to me on my website or Facebook, I will get back to everyone because I know firsthand how isolating this is not just for the person with the illness, but for the caregiver, and how lost and confused and scary and everything else. And so if I can be a voice on the internet that helps someone, I’m happy to do it.

Rachel Star Withers: That’s amazing. Thank you so much, Nicole, for sharing the story about you and your daughter, and for this wonderful handbook that you’ve made to help others in the exact same situation.

Nicole Drapeau Gillen: Thank you so much, Rachel. I really appreciate your time today.

Gabe Howard: Rachel, as always, excellent interview. I was curious though. You have a lot of emotions surrounding this. From your perspective, the perspective of somebody who lives with schizophrenia, what were your thoughts about her emotions as a mom, as a parent? Because she is in fact not living with schizophrenia, and she had a lot of emotions about this, clearly coming from a different place than your emotions.

Rachel Star Withers: On one hand, I find it beautiful. I think when she opened up and she was kind of discussing what that’s like for as a parent and the fact that she came from a very different world, this business world, and then suddenly to realize that here she’s now dealing with all this health care. And it wasn’t as cut and dry as the world she was used to. And then you add on top that she’s a mother and this is your child. She thought her daughter was off in another country just nailing it, having a great life. And then to find out that something very serious was lurking underneath. What Nicole captures very well is that there is a fear under all this that you do have to be prepared for anything. And while you might be stable and this is great, you do have to look at the horizon of what could happen. Hey, I hope that everything continues being stable and being great. And we just keep growing together and treating schizophrenia and managing it. But something worse could happen. A psychotic episode could show up and suddenly the police are involved and suddenly we’re dealing with homelessness. And it’s like a lurking fear that’s ever present. I don’t want to say that I’ve never thought about the fear for my parents, because I do. I know that they fear for my well-being. It’s easy for me to dismiss it, though, and I think as someone with schizophrenia that’s important to remember is that it’s not just about our loved ones loving us. Is that a lot of times there’s fear, too. They’re worried about what could happen. And that does shape a lot of the decisions around them trying to step into our lives.

Gabe Howard: Rachel, thank you so much for your vulnerability. This is just one of those topics that is filled with a lot of emotions, and we’ve covered the emotions from you, somebody who lives with schizophrenia and we’ve covered the emotions from a mom, a parent of a daughter with schizophrenia.

Rachel Star Withers: This episode is full of a lot of hard truths for both caregivers and people living with schizophrenia. There is no easy answer, and there shouldn’t be because we’re dealing with taking over the rights, the agency, the life of another human being. Everything we’ve spoken about can be used, for good or bad, to abuse and control people. For both sides, people with schizophrenia like myself and for loved ones, documentation is one of your strongest tools. Tracking issues, being able to show how symptoms are being managed, providing proof that a person is or is not taking care of themselves. The person with schizophrenia can show others, look, this is the steps I’ve been taking. These are the things you might not see. Some of my life decisions have nothing to do with my schizophrenia. It’s just my choice on how I live life. And caregivers can say, well, we might worry about these issues and here’s why. Learn to look at every situation from a different angle and listen to all sides, because the desire to help your loved one can very easily turn into controlling them, and you don’t want your relationship to be destroyed. Thank you so much 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.