Help and Tips for Families in Mental Illness Crisis: Treatment Advocacy Center (Ep. 71)

Guest: Kathy Day, Senior Family Resource and Advocacy Manager,Treatment advocacy center

In her role as the senior family resources and advocacy manager at Treatment Advocacy Center*, Kathy Day helps families across the country find resources and strategies to work within the system of mental healthcare for their loved ones who have severe mental illnesses. She supports, coaches, strategizes, and listens to people whose loved ones live with SMI. She helps families help their loved ones help themselves. 

Kathy shares her own journey through the process of getting her family member conserved in CA on her public Facebook blog, Broken.

We Ask:

1. What 2 or 3 things would you most like families to know as you tell us about your work?
2. The immediate catalyst was when a listener asked us to address: why do so many people with schizophrenia "choose" to live on the street? What are your thoughts? (Related issues:  Anosognosia, Substance abuse, Criminalization)
3. Are there other reasons family members contact you?
4. What have you found helps families most?
5. What help and tips can you offer  families who have family members living on the street?
6. Any success stories?
7. What resources do you most often refer people to?How did you get into this work (a bit of your story),?

*The Treatment Advocacy Center is dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness. The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder.

Links:

DayK@treatmentadvocacycenter.org

https://www.treatmentadvocacycenter.org/

“Broken” Blog:

www.facebook.com/ourbrokensystem

TAC Gala:

https://tac25thanniversarygala.org/

Want us to cover a topic? comment to share?

Facebook page @Schizophrenia3Moms

@SZ3MomsTrenches -  twitter

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_01 0:00

There are some ideas that I can provide to people that have been helpful at times. Sometimes when they call, they're just they're terrified for their kids. They're confused about why no one will help them find their loved one. They just don't know what to do, but they do know that their kids are going to get sicker and sicker on the streets and likely be taken advantage of. So there's a lot of fear and a lot of panic in family members who contact me for that reason.

SPEAKER_00 0:26

Living on the streets, getting arrested, being hospitalized with no information given to families. These are just some of the crises that families dealing with serious mental illness go through. What do you do? Well, there is a place to go for help and tips on this episode of Schizophrenia Three Moms in the Trenches with our guest, Kathy Day from the Treatment Advocacy Center. Welcome to our podcast, Schizophrenia. Three Moms in the Trenches. From the place where schizophrenia and real life collide. With Miriam Feltman, Mindy Gryling, and Randy Kay. This is episode 71. And we have been trying to get our guest on the show for about 70 episodes. Her name is Kathy Day, and she is Senior Family Resource and Advocacy Manager at the Treatment Advocacy Center. Now, if you've been listening to our podcast, you know we have had several guests from the Treatment Advocacy Center. We are great advocates of the Treatment Advocacy Center. And I'll tell you a little bit more about Kathleen. Just want to say hello to my two. Tonight it'll be three other moms. Hi, Mindy. And hi. I've been commiserating about the ups and downs of dealing with pharmacy and uh medication availability and how hard we have to fight. And there are episodes about that as well. The fight continues. I will let you know that my son mentioned to me that he might be willing to think about going back on that med, but I don't know if he was trying to please me or whether he really meant it. So to be continued. Uh, I do want to start very briefly with a beautiful poem or part of it, because it's it's quite long. But there is a woman who has been writing to me, to the podcast, Care of Me, to share her writing. She has schizophrenia. And her writing is so beautiful. We it took a while for her to agree to anonymously let me share a little bit of it. But it's such a my son is a poet as well, and um it it's such a look into what it may feel like to have schizophrenia. So, with your permission, I just want to read a little bit of it to you. We are here four moms who uh whose sons don't tell us much about what they're thinking, I don't think. So here's a bit of the poetry. The whispers above my head, they never cease. A constant dance of thoughts and beliefs they argue and console, afflict and please my ever-present comrades, my angels and my thieves. They sound in my ear, both sweet and sour, revealing secrets hidden deep in the hour. With falsehoods and truths, they weave a spell, a bane and a boon, my mind they compel. Schizophrenia, the mistress of pain, takes my freedom, my honor, in vain, confined to a world of terror and fear, bewildered and paranoid, she draws me near. With each passing day, she chips away at what I thought I knew for sure. Her doubts and fears, they lead me astray and leave me feeling insecure. It goes on, but I just such a beautiful, well-crafted uh poem. Perhaps um I will read a little bit more of it next week.

SPEAKER_03 4:26

But was that I hope you do, and I also hope you put her in or suggest that she publish it. That is absolutely beautiful. That could be in many mental health journals. The that you know, many of the groups have have uh publications, and that should be should be published.

SPEAKER_00 4:46

Well, I don't know if she's ready and I'd have to ask her, but I'm just honored that she chose to share it and was willing to let me read a little bit of it out loud. So thank you, anonymous listener. We so appreciate your your point of view. So if you're tuning in for the first time, tuning in, see, you can say you used to be on the radio. If you're listening to our podcast for the first time, I'm Randy Kaye. I'm here with Mimi Miriam, but we all call her Mimi Feldman and Mindy Gryling. We each have sons with schizophrenia. We've each written books about it. And this is getting near the end of the third season of this podcast, Schizophrenia, Three Moms in the Trenches. And tonight we are joined by a fourth mom, Kathy Day. I mentioned Kathy earlier in the podcast. Let me tell you a little bit more about her. We have lots of questions for Kathy. So, in her role as the senior family resources and advocacy manager at the Treatment Advocacy Center, she helps families across the country, and boy do we need it, helps families find resources and strategies to work within the system of mental health care for their loved ones who have severe mental illness. She supports, she coaches, she strategizes, she listens to people whose loved ones, like ours, live with SMI serious mental illness or severe mental illness. She helps families help their loved ones help themselves. And Kathy's appearance here came out of a longtime quest, but also a listener who said, Can you ever explore why our loved ones choose to live on the street? Well, we'll talk about that and a lot more. Kathy will share her own journey, and she does through the process of getting her family member conserved in California on her public Facebook blog, broken. I will put the link in the show notes. So welcome, Kathy Day.

SPEAKER_01 6:49

I'm so happy to be here. I can't even believe I'm here with you three moms. Listen to you all the time. I learned so much from your other guests, and I apply it to my work with other family members too. I'm always taking lessons. So you guys are you are doing a great service for families like ours. Thank you so much.

SPEAKER_03 7:09

I've been following you for a very long time, you know, just through the Treatment Advocacy Center um webinars and programs and on social media. You are just such a positive, strong, powerful voice. So thank you for what you do. Thank you, Mindy.

SPEAKER_00 7:26

That's that's very kind of you. And I've never read the blog, but now I will. And in case you're listening and you don't want to look at the show notes, just go to Facebook and search Our Broken System and you'll find it. It's facebook.com slash our broken system. So I I'll kick off with the first question, and then we're going to go back and forth and have a conversation. But before we ask a guest to tell their story and what they do and tips, I just want to start with the headlines, if you will. What are two or three things you would most like families to know as you begin to tell us about your work?

SPEAKER_01 8:04

Probably the first thing is that they're not alone. A lot of us before we find our tribe, we think that no one can understand what's going on. We don't know where to get help, we don't know what to do. But finding the resources, if you will, and finding people who understand is the most important thing to do in the beginning. Uh, the other things are to educate yourself, learn, take a NAMI family-to-family class, read books. I've heard there's a few books listed here. Um podcast, you know, the which you guys all know about. And I am also, I haven't said this to you guys yet, but I'm in the process of writing a book. It's kind of like a handbook on how to navigate the system of care for family members. Much more practical than a lot of the other books of that kind that are written. Just quick and easy. You can apply this right now, sort of things. So I will let you know when I'm done and get it published. This, I'm saying this right now because it'll force me to keep going.

SPEAKER_03 9:02

We need deadlines and promises are deadlines. So you're on a deadline now before we have you back.

SPEAKER_00 9:08

Sounds good. Thank you. That's it. So we'll have you back in season four when the book is at least on its way to publication. That sounds perfect. There you go. We're accountability buddies or whatever that is.

SPEAKER_03 9:21

Book sponsors. I don't know. Since we've written books, we know how how you can procrastinate, or at least I do. Randy seems to get her books out in short order. I don't know about Mimi, but I know it took me five years.

SPEAKER_01 9:33

So well, that's about 30 pages, and I started a year ago. So yeah, it'll take time.

SPEAKER_00 9:40

I always what I do, I sign up for classes, I sign up for courses, and I make somebody give me deadlines. That's the only way I get things done. And and my second book, Happier Made Simple, it sat as a table of contents and an outline for the longest time. And I took this course online and it said, first thing you do is give yourself a negative outcome if you don't finish the book in 30 days. So I promised myself if I didn't finish the book in 30 days, I would have to donate to the political party I didn't believe in. Oh no.

SPEAKER_03 10:12

Oh, that would get me going.

SPEAKER_00 10:14

That got me going. So that's how happier got I won't tell you which party. You can guess if you want, but that's how happy you're made simple. Got completed negative. Anyway, but we digress. Um, Mindy, why don't you take the second question about uh the immediate catalyst? Do you have the question?

SPEAKER_03 10:30

Oh yes, yes. So um, so we use the word choose in quotation marks, but we did hear, as Randy said, from this person who wondered why so many people with serious mental illness, quote, choose, unquote, to live on the street. You know, what is the reason for that? We know you're the perfect person to ask that question.

SPEAKER_01 10:54

Uh yeah, there's so many different reasons for so many people. Probably the main reason, main two reasons maybe, but the first reason is untreated psychosis. People with untreated psychosis can't make rational decisions, they act out of fear, confusion. The voices tell them to do certain things that they don't know how to manage their life, and they don't know why. They don't even think, in many cases, the anasognosia thing, the lack of insight. They don't understand that they're ill. So they end up on the streets. Another part of that is that, and this is almost as big as that, in my opinion. Families aren't given the skills. We aren't given the training, we aren't educated on how to help our loved ones at home to keep them at home. So many times families throw their arms up, they can't manage the illness, they can't navigate the system of care. So they sometimes let their kids go to the streets, sometimes they just kick them out of the home and let them live wherever they want to live. And I I can't fault them for that because we are not trained, we don't know how to do this. It's like being thrown into uh an airplane and told to drive it, fly it. So what a good analogy.

SPEAKER_03 12:11

That's beautiful.

SPEAKER_01 12:12

Yeah, it just came to me. Um, but it's like that. And so we end up with a lot of homelessness. Another part of people with mental illness being homeless is the system has let them down forever. A lot of the people on the streets that I know, they are terrified of going to a psych hospital, terrified of being told what to do and having rules, because those rules tend to, they tend to not be able to follow rules because they're illness. So they end up getting in trouble, more air quotes for that. I I I knew several young men in our area that were homeless because when my family member was really, really sick, they were the only ones who would pay any attention to him. They're the only ones that would hang out with him. So I got to know these guys, a couple of women too, but mostly guys. And if you even brought up the word social worker around them, they would get very nervous. They were afraid they were going to be rounded up and taken into a hospital and placed there and not, you know, have to follow the rules. And it's so hard for them to follow the rules. A lot of people will also say also say about homelessness that people are homeless because they don't want to follow rules. When it comes to mental illness, they simply can't follow the rules if they have untreated severe mental illness. So those are probably the two biggest factors. The other factor would be discharge planning or lack thereof. When our loved ones are in jail or in prison, they don't necessarily get the proper care that they need in there because it's jail or prison. And when they're released, too often they're just released to the streets. Family aren't notified, and they're usually not even in the same town in which they were arrested. Families aren't notified, they go out into the streets, they aren't given a plan. If they are given a plan, it's usually like maybe a paper prescription for meds if they've been on meds. How do they know how to fill that? They don't, they probably don't know how to access insurance, etc. So that's a factor as well. And being discharged from a psychiatric hospital, also. We all know that you may spend your loved one, may spend three days in a hospital. They're considered stable and then they're discharged. And I'm covering a lot of our topics here, but they all fit. HIPAA, for instance, the Health Insurance Portability and Accountability Act that um governs privacy, especially for our loved ones. They are told they don't have to involve families, so we don't know what's going on. They can get discharged from a hospital. We're not notified. They are very rarely actually stable after that three-day period because they're calm. They're also in a structured environment, so it makes them function better. And so they appear stable, and that's being generous to the caregivers, right? But they appear to be uh stable, so they are discharged.

SPEAKER_03 15:12

They in Does HIPAA even apply? Does HIPAA even apply when someone's on the street? Say they don't have any mental health workers, and so then is HIPAA just a non-entity? And how do you advise families um when someone's on the street what to do?

SPEAKER_01 15:29

Great question, Mindy. Um, HIPAA applies to covered entities, like the hospitals, the doctors, the social workers, I think as well. And so on the streets, not necessarily covered entities, but people will always cite HIPAA as a recent reason for not giving information. Sometimes it's it's not really HIPAA, sometimes it's privacy laws in different states. I'm in California, our privacy laws are actually stricter than HIPAA. So yeah, so that makes it challenging. So when I talk to anyone, instead of saying HIPAA, because that's a word everybody hears, um, I'll say your privacy laws, but because they're usually more stringent. Um, but HIPAA really doesn't even prohibit us from giving information or talking to the facilities and the the clinicians and all that.

SPEAKER_00 16:17

So yeah, it's definitely uh misunderstood. And if you're listening and you're nodding your head and going, yes, that's why she called her brought her blog broken, our broken system, we all agree where there are episodes, you can go back in our archives and find episodes on getting uh conservatorship. And we have a couple of episodes with Judge Lisa Wexler, who gave a great insight into the probate system. And also, in case people don't know what the treatment advocacy center is, it's exactly what it says advocating for treatment dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness. Mimi, I think you had a question.

SPEAKER_04 16:59

Yeah, so when um when somebody is on the street and the family members are not happy with that, um what are some of the reasons that they contact you? And you know, what what are what is it that you can do that helps the families when somebody's on the streets like that?

SPEAKER_01 17:18

No, that is also a very good question. There are some ideas that I can provide to people that have been helpful at times. Sometimes when they call, they're just they're terrified for their kids. They're confused about why no one will help them find their loved ones. They just don't know what to do, but they do know that their kids are going to get sicker and sicker on the streets and likely be taken advantage of. So there's a lot of fear and a lot of panic in family members who contact me for that reason. Some of the things that we work around with that are I tell them always make a missing person report with a law enforcement in the jurisdiction in which that person, their loved one, was last known to be. It doesn't hurt to making missing a missing person report. It's not going to get your kid back, but it will notify any responding officers if they encounter your kid, they will see in that missing person report that they are at risk, that they have a severe mental illness that is not being treated. So that could more likely prompt an evaluation at that time. Excuse me just a minute.

SPEAKER_03 18:22

Could an officer could an officer on the street, if they encounter somebody, they give them their name, do they can they check right then on their phone or something to see if they're on the missing persons list?

SPEAKER_01 18:35

I believe so. Um in most places. I don't know about everywhere, but I have heard of it happening in in a lot of places. Sometimes they don't check on their phone, they'll call the station and run a name there. And at that point, they can pick up the information about being missing persons. Usually those reports are only held within that area, that district. So, like if it's the New York Police Department and they go to California, California's not going to find that information, most likely. So that's when I actually go from there to telling family members to circulate the reports that they get to different law enforcement offices anywhere they think they may be going. If they're pretty sure that their loved one went to Virginia, find out where it is in Virginia, send fax a copy usually of that report. I also tell them that it's a good idea to give a picture of when that person looked healthy along with that report. Because when law enforcement encounters that person, if they do see that picture of when they look healthy, they can really they realize at that point how sick the person is. Because if that's what they looked like before and now they look like this, yeah, we need to do something. Pictures, as we all know, are much better than words.

SPEAKER_00 19:48

Um people really look so powerful. I never thought about that. Yeah. They don't know our loved ones before.

SPEAKER_01 20:01

Right, exactly. And it's not even with homelessness. I told people to have pictures handy in case they call law enforcement or first responders of any kind to their home to have a picture, not like when they were 15 years old compared to now, but in the recent maybe six months or less, if they have a photo there and they know they've looked a lot different. There was one client I had whose son had lost at least 50 pounds in a couple of months. So I told her to have that photo of how he looked before he lost the weight. When she calls for assistance, crisis team, show that photo to them. It worked that time because he was 50 pounds lighter and they looked, they they were able to, the first responders were able to realize that that person was gravely disabled due to their mental illness because they weren't providing for their own nutrition, even though mom was there offering it, you know, they they weren't able to accept that type of help.

SPEAKER_04 20:52

So that's you know, that's a really interesting component that could be applied in a lot of situations because so often when our loved ones are dirty or psychotic or you know, screaming on the street corners, they're disregarded like animals, you know. Nobody's no, you know, we can also, oh yeah, that's somebody's kid, but until it's your kid, you don't really understand the magnitude of that. And showing a picture in that case, also because a lot of the time what we're struggling with is indifference or fear. And I'm gonna definitely remember that.

SPEAKER_03 21:32

That is a tip I have never heard before. So thank you. If we had nothing else to learn on this program, that's a gem. Well, I hope you learn a lot more. So I think I think we are, but that one is just totally a brilliant uh a diamond in the in the program. Thank you.

SPEAKER_00 21:50

Yeah, I I just have a general question. Where is the treatment advocacy center located? And do you talk to people from All over the country? Because you've mentioned many different states already. So how does that work? Can people call you from all over the nation?

SPEAKER_01 22:10

They do, and they can. Treatment Advocacy Center's offices are located in Arlington, Virginia. I have an Arlington, Virginia phone app that I have an Arlington phone number on, a 703 area code number. That's what I use for work so that people can reach me across the country. I have probably talked to at least one person in each state and in the Virgin Islands, not Puerto Rico or Guam yet, but everywhere else, someone has called me. The most frequent calls come from California, Florida, and Texas in that order, you might imagine. So, but there's somebody from all other states that needs help all the time. So I've gotten it's an advantage for me in that I get to learn from all of my clients about what's going on in their region, in their state, in their county, and learn different things that I can actually then apply to other clients and our discussions there. So it's it's amazing how much I've learned. I've been there for two years and have learned so much from the clients and hopefully have also taught a lot. But you know, I can't teach what I don't get from my clients either. So learning that is incredibly important and I'm fortunate to be able to do that so that I can share it with others. Then we're really a community, we're all helping each other. Is there a fee? No, no, we're a nonprofit, so we don't charge for any of that service. We um primarily what Treatment Advocacy Center does is legislative and policy advocacy at the state and federal level. And we only added this component of the organization two years ago when they brought me in, providing the uh resources and support for family members across the country. We did it sort of on a trial basis initially. I had a nonprofit that I formed that did basically the same thing I do now. So when I got the job offer from Treatment Advocacy Center, I folded that nonprofit because I have so many more resources now. Don't have to build anything up from that. But I realized in the um journey that I've been on with my family member that there isn't this information, easy information to find. There's no one source that you can contact and get information that you need. And I had learned enough being active in family support groups on Facebook and in-person support groups around my area. I've learned enough, and every everything we've gone through in the 13 years that my family members have been sick. I I learned enough that to be able to share with other people. And I think that's what we all have to do because the system of care, they're not going to share a lot with us. They don't know what families know. We know more. So we have to rely on each other and just work together, network and be open about what we're struggling with so that we can let other people in to help us.

SPEAKER_03 25:04

Do you ever hear back from any families to know that what advice you offered was taken and that it turned out successfully? Or is it not, are people not as apt to do that because we have such busy lives, especially those of us dealing with schizophrenia?

SPEAKER_01 25:22

No kidding, right? I do hear back from a lot of people. Um it's it's often, probably more often than positive. It's we need help again, type of things. Do you remember me? I talked to you about a year ago, and yeah, I remember something about that. Remind me a little. And you know, we just pick it back up. I had an hour-long conversation with someone I talked to last August, and she was updating me on the situation. They're having some challenges. Her friend is in jail due to mental illness and is currently um not doing well. So we strategized on a few different things that would help her help her friend help herself, going back to my little tagline that I use. So, but yeah, and then sometimes, like I had one that called me several times initially, and her sister-in-law was unwell, and they were trying to get her treatment. Six months later, she called and said that um her sister-in-law had ended her life. So it, but she wanted to also thank me for what I did to help her before. And it's like that one really touched me because she didn't have to call and let me know. She really valued the information she got and called and let me know. That's I mean, that's just yeah.

SPEAKER_03 26:38

Yeah, that is so uh so poignant. I'm glad, not glad, but I'm at least I'm not the only one that gives advice and it doesn't end up the way we wanted it. I was just talking two days ago to one of my friends about his son and who had told his father he was suicidal, and they were he and his wife were trying to monitor their son 24-7 between the two of them. And I said, I don't think that's that's gonna work. You know, I don't think you're that's physically and mentally impossible to do. And I gave some other suggestions, and then um, now the young man is in the hospital and he had a suicide attempt and he didn't die, thankfully. But I thought, boy, I I wish I'd given better advice than than how that turned out. But what are some of the main reasons people call you?

SPEAKER_01 27:28

The biggest reasons are um homelessness, jail, HIPAA hurdles, handcuffs, as DJ Jaffey used to call them, and anasygnosia. Those are the biggest reasons that I get calls. I would say actually jail is probably the top of those because people know their loved ones in jail, they don't know how to get help for them. And through my clients, I have learned things like jails and prisons have chaplains. Chaplains are easier to reach than medical staff or the head of the jail or anyone else. You reach out to the chaplain, the chaplain still can't share information with you typically, which is fine. You want the chaplain to go and take a look and see if they can assist that person. You provide that information that you're concerned about, and then the chaplain can check it out and then communicate with the medical staff. So it's it's just another way to circumvent the barriers that come up.

SPEAKER_03 28:26

Wow. Yeah, I didn't know they had those.

SPEAKER_01 28:28

Do most jails have chaplains or just some? They do. Um, I've had that come up several times. I haven't found one yet that doesn't have a chaplain. And usually that chaplain's phone number is on the jail website.

SPEAKER_03 28:41

Interesting. When I called the jail once when my son was in the jail, they told me, ma'am, you'll have to wait for him to call you. This is not a hotel, you know. But I did not know about the the chaplain. That's funny and awful, but also funny. I know, but it was funny and awful. He said it, even in my distress. I I thought it was sort of funny if it wasn't so sad.

SPEAKER_01 29:10

But sometimes humor gets us through. Right. We have to find ways to laugh because laughter lets that stress out. So definitely, even if it's somebody else making you laugh like that. So yeah, it's it's an important part of self-care is being able to laugh, not at our loved ones, not at their providers, but about the situations that we encounter. I just a real quick story with um with my family member. He needed to go to the ER. He was willing to go to the ER. So we went together. He said, Well, let me do the talking when we get to the desk. I'm like, All right, that's fine. I can do that. So he walks up. I hang back a little bit, and he said, They said, Can I help you? And he says, Yeah, she needs to be having needs to be seen. She's having a heart attack. And and also referring to you, referring to me. That's why he had me hang back. And it was interesting because the staff didn't miss a beat and they said, Sir, come this way. So they knew what it was. So it was uh one of the times that I've had to laugh. So yeah, gotta find that we'll tell the story again because then you get to laugh again.

SPEAKER_03 30:14

Yeah, but well, while the next person asks the question, I'm gonna look up my jail and see if they have a chaplain. You go ahead, Mimi and Randy.

SPEAKER_00 30:24

Mimi, anything, any burning questions on your mind?

SPEAKER_04 30:28

You know, HIPAA seems to be the thing that just keeps coming up. And um one of the things that I tell people when advising them is this whole dynamic of they can't talk to me, but I can talk to them. And uh it's you have to be kind of aggressive when you're doing that, but it is a way to get the important information. Like you said, we know what's going on with these patients better than the doctors do. Do you what what kind of advice do you give people in regard to HIPAA and being shut?

SPEAKER_01 31:07

A few years ago, um someone else I was working with and I came up with this idea that tends to work. If they won't listen to you, they won't hear you, which, like you said, they can't, there's nothing wrong with them listening to us. They just usually try to tell us they can't even listen. But if you put something in writing, what I typically suggest is a one-page document stating, I understand your privacy rules, I understand you can't tell me if my loved one is there or not, that this is his name, this is his date of birth, I believe he's there, and I don't want you to have you don't need to tell me anything, but I have pertinent information to give you about his treatment. And just kind of throw that line out and then hope to reel them in. You then say, Um, I have this information, I'd like to discuss it with you. You can reach me on blah, blah, blah. And just keeping it one paragraph like that, maybe two paragraphs, fax it through. What I've heard from clinician, clinicians is if they receive a faxed document or any kind of paper document with a patient's name on it, they have to put that in the patient's file. It's a hard copy, they put it in the file. So the social worker sees it, the nurse sees it, the doctor sees it. They all see that someone is offering to give relevant information to help them treat our loved one.

SPEAKER_00 32:23

Wow. And I love the fact that this is a short document. So they can't go, oh my God, it's 35 pages. I'm never going to read that. Because we've all had stories of sending in a plethora of facts, and they all they never even read it. So just that one page statement that's definitely got to go in their file. That's we had so many great tips here today.

SPEAKER_03 32:46

Um guys, I have to say, I just looked up my Ramsey County Sheriff's Office. They have a whole core of chaplains that are that deal with the community and sheriffs and everything. But then there's a Twin Cities ministries and a whole, so we seem to be very covered with that, but neither place can I find a phone number. But in any case, uh, we have them. So another thing, Kathy. Wow.

SPEAKER_01 33:14

And you can you can just call the main number and ask for the chaplain. They usually aren't going to give you a hard time or anything.

SPEAKER_03 33:19

But I never would have thought of that. I'm going to next time they say this is not a hotel, I'm going to say, well, let me have the chaplain then. Well, how about Jim won't end up in in jail again and then you don't have to worry about it. I he's doing so well now that I don't think he'll ever be in jail again.

SPEAKER_01 33:35

That's good. I'm knocking wood just because we never know.

SPEAKER_00 33:38

I know it. Knock, knock. All three of us are knocking. All three of us are knocking, but you know what? It's important that we share our successes as well. Anyone who's read Mindy's book, Fix What You Can knows what she and her family have gone through. And we're thrilled that right now things are are going well because we we want to share those those successes as well. Um, any any success stories? You I know you said a lot of time when you hear back again from people, they need help again. Do you have any success stories you can share with us? I know.

SPEAKER_01 34:15

Yeah. There have been several. Um, there was a woman in Texas whose loved one was refusing medications and wouldn't do anything. The the woman was living with the mother, and this it was a friend, again, a friend, who was trying to help. And she was running into roadblocks. She couldn't get help for the the friend who would go out on the streets and then come back home, wouldn't take meds, wouldn't bathe. That's a huge one with all of our loved ones. I suggested to her, you guys had Dr. Amador on early in, and his book, Lis uh, I'm not sick, I don't need help, right? Yeah, with the belief strategy, listen, empathize, agree, and partner. I talked to her about that book. She downloaded the book from Kindle. She called me two weeks later and said, Oh my gosh, that worked. I was able to, I sat down with my friend and we got her medicines, and together we put the pills in the little plastic per day med containers. So they did that, engaging her at the same time. The friend was the partnering. They partnered to get this done. They also she learned how to talk to the sister to get her to shower at least a couple times a week. And that was huge. She hadn't showered for months prior to that. So that's not necessarily me helping her and being a success. It's me sharing Dr. Amador's technique and her applying that technique. So I swear this is success.

SPEAKER_03 35:44

That's that is success. Any any small steps, you know, I don't think other people realize what we, you know, just celebrate as success, if it's just a small step at times.

SPEAKER_01 35:57

Exactly. It's like my kid showered today, and that's a success. Somebody else outside our world says, My kid got a great job today. Well, we each have the same amount of joy in that case.

SPEAKER_04 36:07

It's just our bar is a lot low. A lot lower. We have a lower bar.

SPEAKER_01 36:13

But but we still get the same satisfaction and enjoyment out of it. So it's it's that lower bar, like you said, Mimi, that we don't have as many expectations. And in some ways, that makes it a little easier that for them to exceed our expectations. And and that's kind of surprising. Quick story on my family member. He's been a lot more stable than before in the situation he's in right now. You'll see it in the blog. He I so I started implementing, I go visit him twice a week, Wednesdays and Saturdays. So I started asking him to shower the night before and change clothes before I got there because otherwise he'd be smelly and he'd be dirty, and it's like, I don't want to take you out in public. But I did. But I suggested it to him. I put it in writing, which is key with him. If he can see something in writing, it sinks in better. I think a lot of our loved ones are like that. He um the first two times I reminded him the day before, I need you to take a shower, and then you know, make sure you change clothes before I pick you up. I forgot to remind him the third time, but he did it anyway.

SPEAKER_03 37:17

You know, that is that is so interesting and important. Jim, you know, like everybody else, when he was first sick, that was one of the hallmarks, you know, that he was needed to shower, had needed to change his clothes. And then he was in a program actually for 10 years where they did exactly what you're saying. They reminded him and he had to shower because he went to work and they had private or public, public and private contracts. It was real work, in other words, it wasn't like a sheltered workshop or something. They had to shower and they had to do it every day and they had to have clean clothes. And it eventually became second nature to this day, even though Jim is not in that program. He's at our house most of the time and at his apartment occasionally. He showers every day without fail. He doesn't shave every day, but he showers every day and he will only wear his clothes once. You know, I wear my clothes two or three days occasionally. I change my underwear, you know, but but he will only wear his clothes once a day. I mean, it's so he has mountains of laundry, he does it all himself, and it's all because he learned at this program, you know. So I think we sell people short when we don't expect them to do things. They have to relearn these things, though.

SPEAKER_00 38:39

If they're in the place where they can. I mean, it's the power of that. You know, just for perspective, I will tell you that my son right now is not in a great place. And as you guys know, he's refusing to get his teeth fixed, even filled. He keeps finding a reason to cancel his dental appointments and he's like job hunting. And I'm like, do you think you might have a better chance of getting a job if your teeth look good and you've showered and shaped? Well, if they're gonna judge me on my appearance, then I don't want to work there. So we're there. Yeah. So I mean, I would, you know, if you read my book, Ben Behind His Voices, you know, we were there when he was 17. It's almost like a tiny, you know, they have grand delusions. This is a tiny delusion. So it it is, but the but it can show you the power of habit if necessary. We want to just um get back to the resources that you were sharing. So you said you offered Dr. Amador's book. Um, and I know that Mindy has recommended you as a resource to people, and vice versa. And we all recommend each other. So, what other resources besides your own blog and our podcast? What other resources do you recommend? When what do you refer people to in Dr. Amador's book, of course?

SPEAKER_01 39:56

Right. There are um a lot of different things, and people don't know what they don't know. And that's kind of where I fill that gap too. People will call and tell me that their loved ones are in jail, the first time they've been in jail, they're scared. What do they do? I ask them what county and and state they're in. I Google real quick. I'm basically a professional Googler. I Google real quick and find that they have a mental health court in their location. So I explain mental health court, provide the um the contact info for the court and advise them on how to go about trying to get their loved one into mental health court. Mental health court, for those who don't know, is a specialized court to divert people from the criminal justice system with mental health court, at least in most places. I can't speak for all of them, but they are set up in such a way that a treatment team is committed to the participant in mental health court. They do have to plead guilty first, but that charge is dismissed if they complete the program. There's a treatment team that are assigned by the judge to make sure the people stay in treatment. They have meetings with the judge like every week, and it's a very relaxed atmosphere. The objective is to try to get them to continue to be in treatment with the threat of potentially going back to jail and having a criminal record if they don't. It's been so successful, successful everywhere. My family member went through it early in his illness, and it took him about 17 months. There were a lot of hiccups along the way, but he graduated, and that was the only time he had been in jail. The charges were dismissed. He has a clean record now. That was like in 2012.

SPEAKER_03 41:30

My son was in uh mental health court too, but in Minnesota, the charges are lowered, but not dismissed. So and in another in the county next to us, the charges aren't lowered even. You just go through mental health court instead of jail. So I think uh ours could take a lesson from yours.

SPEAKER_01 41:48

I think so, because there's no incentive for anyone to be in that mental health court program, other than not being in jail or the workhouse. Yeah, but if there's still a charge, the having a charge, and the reason I got my family member into that was that if you have a charge on your record, you can't get federally funded housing if there's a criminal record, or you can, but it's incredible.

SPEAKER_03 42:11

Well, we know all about that about in the grilling household. Yeah, so because the he did he went through mental health court, he was the fastest person ever to graduate, but he still had uh a charge, and that that really uh he got turned away. I can't begin to tell you how many times from housing.

SPEAKER_04 42:31

Yeah, I think you have two questions. Um I'm I'm just wondering give us a little bit more of your own personal story, whatever you feel comfortable with. We're assuming your family member is uh your son, yes, no.

SPEAKER_01 42:45

Um you know, I refer to him as family member. We aren't related biologically, and he's not adopted. Um, I won't go into much of that story because out of respect for his mom, who's not in the picture right now.

SPEAKER_04 42:59

But just so is that what brought you into this advocacy?

SPEAKER_01 43:04

When he became ill, he was living with me since he was 17. He got sick or started exhibiting symptoms right after that, not long after that. And so once he was diagnosed, he had his first psychotic episode in July of 2010. And I knew at that moment I needed to dive in and learn everything I could and connect with everyone I could possibly connect with. Went to the NAMI Family Family to class. That was class, that was one of the first things that I did. And yeah, that's what got me into the work that I do. I connected on, you know, people complain about Facebook and social media. Oh my gosh, I don't know how people could navigate this system without social media. What I've learned from advocacy groups and DJ Jaffe, I've mentioned mentioned him before here, he wrote Insane Consequences. I forget what the subheading is on that, but he he's brilliant. We lost him a couple of years ago, sadly, but he was brilliant. He's one of the first. People I connected with. And DJ introduced me to other advocates and support people, family members across the country, who are now some of my very best friends. And we may not have even met in person. But it's it's just such an amazing community. And I still think that before social media, like 30 years ago, probably less than that, you know. Um, I don't know how family members dealt with this.

SPEAKER_04 44:22

You may have can I tell you, my son has been sick for over 20 years. Wow. So you know when he first got sick, there was nothing. I mean, what I would have done to talk to one mother who was dealing with this now, eventually I got into uh NAMI and and and family to family, and so that helped. But I mean, there was nothing, there's nothing. And imagine 20 years before that, right? And then the doctor was telling you it was your fault because you were a refrigerator mother.

SPEAKER_01 44:54

Yeah, yeah. Ah, the good old days. Yeah.

SPEAKER_02 44:58

So perfect. Yeah.

SPEAKER_00 45:01

So the bottom line, excuse me. So the bottom line here is that uh I think what we most want listeners to know is that in uh in a crisis of which we have many, homelessness, jail, problems with HIPAA, there is help. The Treatment Advocacy Center helps families to help themselves and therefore help their loved ones. And does that pretty much sum up what we're covering here, Kathy? And anything else you want to add before we say our goodbyes? Left out.

SPEAKER_01 45:38

I think that that covers pretty much everything. I'm trying to think actually, it can never cover everything, obviously, but I think we've touched on the important parts for this session. And yeah, hopefully.

SPEAKER_00 45:52

So tell us how to get in touch with the Treatment Advocacy Center, the website if you want, the phone number. We'll put it in the show notes. But tell families how they can get in touch with you.

SPEAKER_01 46:02

Absolutely. Um, one thing I do want to say we are this close to creating a new website. We're working on content. We're doing everything we can to create a new website. Our current website is not that easy to navigate, but the new one is going to be phenomenal. Probably in about a month, it'll be live. Um, it may take a little longer, you never know. But but we're working on that. And that's where a lot of this information that I'm giving now will be housed. We got a generous um donation from the Joan C. Scott family, and they are funding the um the family resource center. And we're just trying to put purge my brain, put as much as I can um into actual tangible resources there that you can click on, find out right away. Um before that, and even after that, if you want personal one-on-one contact, you can contact me at my email address, day k d-y, for my last name, K, my first initial, at treatmentadvocacycenter.org. I'm sure Randy's gonna have that in the notes. And my direct line is 703-294-6884. Feel free to call whenever, leave a message, send the email. I do only work certain hours during the week. Only um, I'm a 30-hour employee because I'm semi-retired. But um, but I will always answer phone calls. I will recall, I will call you back, I will email you back. That's one of my pet peeves from the illness going through this journey with my family member. People don't call back. People don't email you back. Everything goes out somewhere and you're just left not knowing what to do. Um actually, the first organization I called that called me back was Treatment Advocacy Center back in 2010. I left a voicemail and I thought, oh, here it goes again. Nobody will call me back. That night, the executive director of Treatment Advocacy Center at that time called me back, seven o'clock California time, 10 o'clock his time. He called me back the same day. So at that moment, I knew that TAC was going to be the best organization to work with. And so I'm just overjoyed that I get to work for Treatment Advocacy Center and with all the employees here. So yeah. Wow. And we are delighted.

SPEAKER_03 48:18

Can I get one more thing in here before Randy closes out the show? I would be remiss if I didn't say, because Kathy didn't, um, that there's a big event in Washington, D.C. on September 21st. And it's at um at a hotel in Northwest uh Washington, D.C. I would and I used your web page just a couple days ago to order my tickets for myself and my daughter. And it was a very difficult web page. I could get my my uh order on there, but somehow it was not letting me get my daughter in. So she ended up with my email instead of, and I said, I think you might want her own email because she contributes too, but that was as best as I could do. But um but a wonderful organization for anybody who wants to be there, see Dr. Efal or Tori celebrated for the brilliant genius that he is. I can't wait for that event. And what event is this?

SPEAKER_01 49:15

It's the advocacy center 25th anniversary event, September 21st in Washington, DC. I can't remember the name of the hotel either. It's Hayes something or something haze, and it's very high-end and really nice. Our keynote speaker, who's maybe somebody you should have on the show if you haven't, is Jonathan Rosen. He wrote The Best Minds. Um, can't remember there's more.

SPEAKER_00 49:39

I'm reading, I'm reading the book right now, so we will contact him.

SPEAKER_01 49:42

Yes, it is amazing. I I have read that book, yeah. Yeah, me too. So I was excited when they said he was going to be our keynote speaker. So wow, yeah. So it's gonna be an amazing event. We're going to try to get a listening session for advocates to come and just, you know, have a small meeting, 50 people maybe of the advocates that will be there, just have a session to strategize and to work on things. And if you, anyone who is going to be there, take the time when you're there to go visit your elected representatives in Congress because you'll be right there. Why not just go knock on the door? I don't know if it's that easy, but yeah, just arrange to go meet with them and talk to them, tell your story. Stories are powerful. So that is a perfect.

SPEAKER_03 50:25

I think you need an appointment for a for a congressperson. Right.

SPEAKER_01 50:28

I think so too. But maybe if you go en masse, they're gonna have to open the door anyway. If there's like 10 of you, I don't know.

SPEAKER_00 50:33

Or make an appointment. Or make an appointment. Kathy Day from the Treatment Advocacy Center. Thank you so much for joining. Get that book written. We'll have you on the show again when it comes out.

SPEAKER_01 50:45

Do we have a title for that book? Uh, not yet. I've had a few working titles and I scrap each one. So I'm going to write the book and then go, okay, now I'll name you afterwards.

SPEAKER_00 50:56

So it will it will come and I'm sure it'll be useful to families. The two things you started with families, you're not alone, and let's educate ourselves as much as possible. We've come a long way in this episode in doing just that. Thank you for all you do and for joining us.

SPEAKER_01 51:12

Thank you. And thank all of you for what you do. I mean, you make a big impact. Oh, that would be the the third thing I should say to family members. Listen to Schizophrenia Three Moms in the Trenches.

SPEAKER_02 51:22

This would be so that's a great ending. That's a great ending. A little plug at the end.

SPEAKER_00 51:28

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