64+ Family Stories and Grassroots Change: Dede Ranahan and 64 More Moms, Part 1 (Ep. 4)

Interview with Dede Ranahan, author and editor (64 co-authors)  of “Tomorrow Was Yesterday...Mothers Across the Nation Tell It Like It Is“ living with SMI (Serious Mental Illness) in our loved ones.  Not just family stories, but about action. Advocacy. What we want to see happen to help families like ours.

• Author Talk: How we got our books from idea to publication
• How Dede found and collected 64+ stories of  Serious Mental Illness in the family
• Getting change on a Federal level to help families- The White House Book Project 
• Getting Down to Grass Roots - the 5-point plan for change 
• HIPAA reform- #2 on the list, and why it matters so much   
• Preview of Part 2 (Episode 5) - the rest of the Five-Point Plan, and what we can do

Transcript

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SPEAKER_00 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. Welcome to episode four, which could be part of a two-parter. I want to start with something I'm reading from this book, and we are going to be talking to the author today, and I'm very, very excited. This is called Tomorrow Was Yesterday. One of the first things that struck me is a poem written by somebody named Teresa A that really resonated with me. I struggle alone to understand the disease you can't see. I wish for the person my son used to be. There are days I cry for the future I dreamed he would live. I cry because sometimes I think I've given all I can give. I cry because I'm loving a boy who can hurt me so. Then the days happen when I see him once more. The son with a gentle soul I adore. He will fight this fight, and I will too. There's no limit to what a mother will do. Welcome to this episode of Schizophrenia, Three Moms in the Trenches. As you can see, we're four moms, and actually there's 64 more moms. We're 68 moms today joining us for this episode. I'm so happy, along with Mindy and Mimi, to welcome our guest, Dee Dee Ranahan, who's right here. Hi, Dee Dee. So nice to meet you. We're all huge fans of your book. And we just want to start with, I'd like to do this every episode because we all know the ups and downs of having a child with schizophrenia. Dee Dee, I know your Patrick is gone. So what progresses is your grief and your advocacy. Mimi and Mindy and I all have sons that are still with us. And so if we could just go around, people who've been following our stories and read our books know about our sons. And let's just do an update. How's your son doing this week? I will start like in 30 seconds or less if you've been following our story. Um, my son, who I call Ben in the book, and I call him Ben in this podcast,

Update on our 3 Sons

SPEAKER_00 2:20

after five and a half months, is getting out of the hospital day after tomorrow. So wonderful. Um, and I'm a little terrified and a little excited. And with COVID, he called me up and said, Mom, this is such good news. You're gonna be so excited. And I went, What? He says, You get to pick me up and bring me to my group home. So, in that, if he gets a negative COVID test, I get to see him actually and bring him home to pack a bag and drive him to his new group home. And I don't know when I'll be able to see him in person again because of COVID, but that is the news here. Fingers crossed that he stays on his medication. Mindy, what's how's your gym this week?

SPEAKER_02 3:05

Last week, my gym asked his catty waiver persons for help finding a job and to open an ABLE account, which I don't know if people know what that is, but it just means you can save a little more money without losing your benefits. This is huge after what we've gone through for anyone who's read my book. He's been on clozapine for a couple of years. I credit that. I credit um the fact that he's living with us, so we're supplementing big time the faulty mental health system. But we're celebrating this week.

SPEAKER_00 3:39

It's a week of celebration, and it's great that we have those. Mimi, how's your Nick?

SPEAKER_03 3:44

He's doing well. We're sort of uh a kind of tipping point. We're gonna see where things are going, you know. As you guys know, he's seven months now into the clause pine, and his um, you know, his improvement is incredible, like nothing I've seen in 15 years. He's now talking about wanting to go back to school and take some art classes, and all of that's very exciting and new, but it's offset by as he's getting more alert and aware, he's also starting to be a little more disruptive. So, you know, they the two things seem to go along. So we'll see which which side wins, but so far, so good.

SPEAKER_00 4:24

Okay, thank you. And we have here our guest, which I will jump to you next, a fourth mom. Now, just by way of introduction,

Meet Dede Ranahan

SPEAKER_00 4:34

Dee Dee has written many books, but the two that we're most aware of is uh, you know, this one that came out when, Dee Dee? Sooner than tomorrow.

SPEAKER_01 4:43

2019. 2019.

SPEAKER_00 4:47

This book is not the one we're gonna be focusing on that much today, though it's wonderful as well. Kind of a memoir of your life that turned out to be a tribute to your son. And I'm gonna ask you to tell your story in a minute. This book has just amazing in so many ways, but this particular one is in the middle of an exciting advocacy movement right now. So I love all your tags in it. Oh, yeah. It's just like things I ran out of highlighter and pencil. And so, yes, I when I read a book, I read a book. So my god. Yes. So, Didi, tell us a little bit about Sooner Than Tomorrow briefly, but then what happened after that? Because you told me on the phone the book turned out to be something you didn't intend it to be when you wrote it, but then tell us what happened with the website you started with other moms and how it turned

Sooner Than tomorrow - first book

SPEAKER_00 5:42

into tomorrow was yesterday.

SPEAKER_01 5:44

Well, in June of 2013, I was looking ahead to turning 70

Getting our Books Written - and Published

SPEAKER_01 5:52

in May of 2014. And I wasn't a happy camper. I thought, how did this happen to me for crying out loud? And so I just decided I wanted to live this year going into 70 with a lot of thought and reflection and just being alive and taking it down and leaving something for my grandchildren. I think this book will probably be really popular in about 150 years when historians are saying, What was it like back way back in the dark ages? You know. So I just decided it would be organic. I would get up every day and I would just write an entry for that day from whatever was happening around me in that day. So that was the genesis of doing it. The hardest part was just doing it every day. But I did. And I didn't know that Pat, my son, was making entries on Facebook regularly. I wasn't on Facebook right then. So I got to the end of the year, June 15th or 16th. And on July 23rd, Pat died in a psych ward very unexpectedly. And that's when I started digging around, found out he'd been on Facebook, went book. You can get books made from Facebook posts. And so I had a book of all of his entries for the last five years put together. And then began reading his entries and decided to put his entries when he wrote them on the same, you know, one of the days I I was writing bottom to mine and and and see what we got. And sometimes they're in sync and sometimes they have nothing to do with each other. But I think it's his voice. And so it really started as a gift for my grandchildren, my children, my grandchildren, and a way to remember him. And that was it. And then putting it all together, I just decided I don't know what's here, but I'm gonna put it out there and see what happens.

SPEAKER_00 7:54

Okay, and and you do frame it talking about Patrick and what's wrong with the mental health system. And so you started this website sooner than tomorrow.com. Is that correct?

SPEAKER_01 8:08

Well, this is called Learning But Deceive Your Pants. So I go to a writing conference and the keynote speaker, 300 people, sounds like she's talking to me. She says, if don't even try to get an agent if you're an unknown writer over 70. Don't try to get an agent if you're an unknown known writer over 70 writing a memoir. Don't try to get an agent, especially if you're an unknown writer over 70 writing a memoir in diary format. And do not try to get an agent, blah, blah, blah, if your book is about mental illness, and especially if it's about somebody who died less than 10 years ago. And I'm sitting in the audience feeling like she's just boring into me, into my soul, and being, well, so glad I came to this conference. This is the end of that. So, of course, then I came home and got mad and just decided I wasn't gonna listen to someone else's advice and just go for it anyway. And I don't even remember what your original question was.

SPEAKER_00 9:08

So I'm gonna pause the original question for a second because if you're new to the podcast, Mimi and Mindy and I have all written books as well. But Mimi and Mindy's books came out in 2020. So I'm just curious, you guys, did you hear the same thing as a writer?

SPEAKER_03 9:23

Like, don't write you know, I sat down and wrote this book. Like everybody knows, I'm a painter, I'm not a writer. Well, I guess I'm a writer now, but I wasn't then. And I didn't know anything about the writing world. And I had a 400-page book written before I even started to look into what the road to publishing was. And um, I heard everything that you heard that you said, all the same things, except mine isn't in diary form. I heard that all later, so I didn't really know, and I just went online and taught myself how to do it. And as far as the agent thing, I knew that the odds were really slim to get an agent. And just one funny story about that is I um the the tutorials tell you send out queries to 20 agents that you think you match with, and then wait for their responses, and then you know, assimilate their responses into what you're doing and maybe tailor things and do 20 more and keep doing them. And so I started to do the first 20, and I started to get these responses saying that we got it, and we'll get back to you. And they all said, if you don't hear from us in 18 to 24 weeks, assume it's a rejection. And I started looking at it 20 queries, 24 weeks. I got lifespan issues here. I sit around for 24 weeks doing this, I'll be dead before I have an agent. So I sat down on January 1st, three years ago, and I made that my job. Eight hours a day, I sent queries. And by the beginning of February, I had sent out 800, 964 queries. I just sent them from morning till night. Every day I figured I gotta work the numbers here. Almost a thousand queries, and by mid-February, I had four offers of representation. So I just played the numbers. I mean, this could have gone on for years, but I thought we gotta make this work. That's amazing. Oh my god, what stamina you have? I mean, we're all like a dog with a bone when I get an idea.

SPEAKER_00 11:27

We're all mothers of sons with serious mental illness. So stamina is our middle name. Uh Mindy, you shook your head. So I guess you have more.

SPEAKER_02 11:35

I didn't uh send out 800. I I sent, I tried, tried to play by the rules. I sent out 20, and then um then I went straight to being advised to go to a uh regional press. And I went to the University of Minnesota Press. And in Minnesota, because I was a legislator, I had the advantage of being known. And so that helped me. And I also had wonderful mentors that helped me with my proposal, and so I got accepted there right away, and I was very fortunate. But I do think that there is ageism against authors and also women authors, you know. If you take a look at books about mental illness that have actually made the big time that are memoir type, they're all men.

SPEAKER_03 12:23

So yeah, you know, uh, and an aside to that, if you take a look at just about any support group or advocacy group in America, they're all women. We're doing all the work and they're writing the book. Women do all the work.

SPEAKER_00 12:37

Okay, so we're gonna like veer right back onto the topic, ladies. And talk about because that would be for another show for another year with another title. But I know because my book came

Stories of Other Families with Schizophrenia

SPEAKER_00 12:50

out almost 10 years ago now. And one of the things I love and also hate because I hate for anyone to go through what we've gone through, what our sons have gone through, is getting letters from readers. And oh my God, your book helped me because this is the hell I'm going through. And I would hear stories, and I'm also one of the teachers. I teach a course for the National Alliance on Mental Illness called Family to Family, and you hear stories. And I always thought, wow, you know, we're for we're we are but four stories of so many, so many. And I always thought, oh, I wish I could get people to tell me their stories, and I'll just put it in a book. And that is what Dee Dee has done. So, from what I understand, Dee Dee, you eventually this uh website turned into sooner than tomorrow.com. And you also went fishing around on Facebook, I guess you got really good at it, at some of the groups there, like families of schizophrenia diagnosis and uh uh families for care. There's a bunch of groups. Maybe you can share the names of those groups with us. And I believe you courted some of these other families and said, send me your stories, I'll edit it. If you approve it, we'll all write a book together. Is that pretty much summing up how that happened?

SPEAKER_01 14:09

No.

SPEAKER_00 14:10

Okay.

SPEAKER_01 14:12

So since I was doing everything myself, the other thing I was hearing all over the place was, well, you have to have a website for your book. You have to do that. This is all very homegrown. My daughter helped me set up my website, and I thought, well, this could get boring fast if it's all just me all the time. And I had started joining some of these groups as I was researching my son's entries on Facebook. So I thought, well, this is fine, but all these stories in these groups on Facebook are all talking to the choir. I mean, these are intense stories and they're not going anywhere. The whole world isn't hearing them. So I thought, well, I'll put an invitation out to show stories on the blog. And I was surprised. Well, I probably shouldn't have been because I'm an unknown person. I wasn't getting stories. So I had to still go fishing for them. And I would go on these websites and a few people I knew, and I started with the people I knew and said, Would you let me put what you posted today on the on sooner than tomorrow? So that was how that started, and then it just kept building, and every once in a while someone would send me one in over the transom, as they say. But most of the time it was me going out and saying, I really like what you wrote today. Can I put it on my blog? I might have to do some editing, but I won't post it until I send it back to you, and you're okay with whatever I do with it. So I did that 216, 220. I never planned to write tomorrow, was yesterday. I don't remember when that even occurred to me, but I was carrying all these stories around and they were very heavy. And I'd go to not bed at night furious, and I'd wake up in the morning furious because thinking, oh my God, there is so much suffering going on, and nobody even knows. So, what would it take? I wonder if anybody would be willing to move these stories from the blog to a book, which potentially could be a lot more public. So I began emailing all of the moms that I had shared stories on the blog, and I would say 95% of them said yes, you can put my story in your book. And those who didn't were afraid of retribution, their loved one wasn't ready to share, they're in the middle of a court case, they don't want to jeopardize, they didn't want to be that public. So then I thought I've got to be careful here because it's just such sensitive material. So I sent a release form to each of the 64 mothers, you know, for them in writing to sign up a form that said I had permission to share their stories, to explain, I'm self-publishing this. I don't know if I'll ever get my money back. That's not my concern here. So you're not going to be getting paychecks from me, but I will send you a copy of the book.

unknown 17:12

Right.

SPEAKER_00 17:12

And I love it.

SPEAKER_01 17:13

Yeah, so that was the deal. And they all signed off. And there's the book.

SPEAKER_00 17:19

And I loved what you said about yes, we go all in in these support groups and these chat rooms. And yes, we are talking about our family experience with an illness that somebody we love has. And in in a lot of these groups on Facebook, there are people with schizophrenia sharing their stories, which I find fascinating. But you're right, the stories stay in those groups. I've asked Mimi and Mindy to each pick a story from the book that they particularly resonated with, I guess. And if you could briefly share, you know, I I read a poem that that really struck me, but I'm going to say so many people with children in jail and brothers and sisters that are homeless and wanting so much to help them and not being able to help them and frustration with the system, which we're going to cover very soon in great depth. But let's stick with the stories for now. Mindy, you want to go first? Was there a particular story that struck you?

SPEAKER_02 18:12

Sure, Randy. And uh, Dee Dee, actually, all the stories resonated with me. I'm sure they did with all of us because we are moms too. We have been through so many of these things. We still have our sons, unlike you and others in the story in the book. But the things we've gone through, I think, are universal. And I could have picked any chapter, I think. But I picked the one called I Am Never Calling the Crisis Team or the Police Again, because that one is really sticks in my cron. I've been there. I won't say I'm never calling the police again, but this one, the crisis team, I rarely don't call them. This one says it's by Cecilia Bolkin Speck from Oregon. This morning, my Keisha. Is it Keisha? Thank you. I think it's Keisha. Keisha,

Mindy highlights a Story

SPEAKER_02 19:00

thank you very much. She says, Oh my goodness, I'm never calling the crisis team or the police again. This morning, my son had a really, really rough time. And I'm condensing this a bit. He was distraught because he believes that I, his mom, killed somebody in 1984. He texted me and said, You need to call the crisis number and have the police do a well check on him. The police said they were really busy today, that they would try to get to him tomorrow. They did, however, advise me not to go near him. The crisis team said that because nobody seen a weapon, and because my son didn't actually threaten me or threaten to harm himself, well, not today, but yesterday he did, that they would document my call, but there was nothing else they could do. This problem of the crisis team can come out for people who aren't quite so sick because they're willing to go, they recognize that they're ill, or the police can help get somebody to the hospital who's willing to go. But those who have anasygnosia who don't know that they're ill because of their brain dysfunction, that means we leave out so many of the very sickest people. And this has happened to us so many times, it breaks my heart because we all know that when nobody helps, dire things can happen.

SPEAKER_00 20:30

Thank you.

SPEAKER_01 20:31

And we will talk about one of the things I think makes these stories so powerful is they weren't written for publication, they were written in support groups where they were just asking for people to say, you know, do you have any advice? Just listen to me. So they're very some of them are a lot of them, I guess, are very raw and they're very real and they're very honest. And I just think they're all fabulous. That's my humble opinion.

unknown 21:01

Thank you.

SPEAKER_00 21:02

I I also love that they come from very many different states. And as we're well aware, different states have different rules in place, and we'll talk about that. Where we're going to get to what can we do, but we want to share the stories first. Thank you for sharing that, Mindy. Mimi, which one really which is

Mimi Highlights a Story

SPEAKER_00 21:23

one of the ones that really stuck with you?

SPEAKER_03 21:25

Again, I picked up this book and I started reading it, and I had to put it down pretty quickly. It just it's so much, you know, the because the stories are short and there's just one after the other. And you know, 20 years into this whole life for me, I'm still overwhelmed at how awful it is for people and what people go through. And actually, what I picked is it's an awful story, but it's not particularly it's a very short one. And it's my friend Terry Clark, who Lives here in Washington and she founded M O M I, which is Mothers of Mental Illness, which is an advocacy group here, and she's amazing. I met her because I saw her on TV, PBS did a thing called Brief but Spectacular that they do. It's like a two-minute piece on somebody, and they did this on her and said, Well, I gotta meet this woman. Her son Calvin was younger than Nick and he had bipolar. But the reason why I picked hers is because although she's a hands-on advocate and has really made change happen here in Washington, her what she wrote was a more philosophical overview. And it's something that I think that we mothers have to remember and can hold on to a bit too. She says, My goal is not happiness, but human understanding and compassion within the complexity of life. I'd like to explain this a little more. Accepting that happiness is a momentary and fleeting aspect of life and not the goal leaves room for grief, struggle, and confusion. Those equally important experiences cannot be disregarded as bad, wrong, or something to avoid. Families impacted by mental illness can seek comfort in accepting that happiness is not the only experience worth feeling. Please find courage to sit with whatever you are sitting with right now and see the path lit before you. What is yours to say or do? What does that action look like? How will you make it manifest? And I just think that that's a really important message for all of us who live in this chaotic world with our sick loved one, where you know, we're running from one fire to the other to put it out, to just let go of old expectations and start to look at what surrounds us and what is in our life now, and what's the best thing that we can do with it. And you know, less than a year after I met Jerry, her son also took his life by suicide. And it was so shocking and so tragic because she was somebody who I looked at and well, there's somebody who's got it all together. Look at her. She's, you know, she's advocating and she's got her son living in this great halfway house with a clubhouse, and now he's in his own apartment, and it's this success story. And I have to admit, honestly, I felt a certain amount of jealousy where, because you know, Nick was real out of control then. And I was like, oh wow, she really got it together and took care of her son. And it reminded me again that we can do everything right, and it doesn't matter, it's not in our control, and it's something that we have to remember because it's impossible to live as a mother otherwise, because

Our Dreams Change for our kids

SPEAKER_03 24:41

the weight of that is just too much.

SPEAKER_00 24:44

I love that. And I there's a couple of entries in here where she says, My dreams have changed, and my dreams for my son have changed. Obviously, when he was young, and we've all had sons that are wonderful, and I will say we probably had to alter our dreams for them, and that's true of any parent. You may dream your daughter's gonna be a ballerina and she wants to play football. Parenting is the most humbling thing ever. And you have four kids, right? Three daughters and a so they turn out the way they turn out. When you add a serious mental illness to it, it certainly changes those dreams a lot. And now you dream for better treatment, you dream for better care, you dream for what we can do, and you have

White House Project and 5-point plan for change

SPEAKER_00 25:36

to let go of control. But at the end of the book, after the conclusion, Dee Dee, you have this grassroots five-part plan, which is actually the top five of a longer list, right? Of what really needs to be done. So I wonder if you could talk a little bit about that. And then I also want to ask you about the White House book project and what's going on with that, because there are changes that need to be made on a federal and on a state level. But tell us about the process of how you and the other 64 moms came up with this list of SMI needs. And what was the top five?

SPEAKER_01 26:19

Okay, that we got two separate groups here. We've got the 64 mothers in the book, and then we have a hundred plus people from across the country: advocates, journalists, professionals, family members, individuals who helped generate this five-part plan. And some of those groups overlap. I get myself in trouble all the time because I think out loud before I just say something out loud. So I was on, you know, and Facebook gets a lot of flack. But for my book and for this plan, I mean, there are some good things that can happen on Facebook. So it was the 2019, it was the middle of the elections season, everybody's on TV, they're having debates, they're you know, traveling around the country, and I didn't hear one word, one word. I didn't hear a word about mental health, never mind serious mental illness,

Getting down to GrassRoots

SPEAKER_01 27:14

nothing. And I thought, how can this be happening? They're all talking about American issues, and this doesn't even show up on the radar screen. So I made some sort of post like, we need a plan to help these legislators out. We need to do something. Well, people kind of jumped on that, and I think it was two or three months, and it was all very transparent. We put all our suggestions down on Facebook where the whole world could see them, and then I'd bring them back and kind of put them into groups of topics and then put it back out there, and then it'd get massaged some more. So it's a really true grassroots product, and I get ecstatic about grassroots advocacy. So we put it all together, and then we had all these categories. I think there were 20, and then we took a vote, and that's how we came up with the top five. These were the top five issues that got the most votes about what people wanted to have addressed first. So it's not scientific, it's just from people on the ground who are living this, and then we put the rest into the extended list.

SPEAKER_00 28:28

Okay, so in a moment, let's talk about those top five because you've got three more moms here who've had experience with this. But I would like to ask you about the White House book project. You shared some exciting news with me earlier today. So tell us about that.

SPEAKER_01 28:49

Well, that's another thing, and just putting opening my mouth, if you know, just I said something like um, wouldn't it be? Can you imagine what would happen if the White House got a book from every state copy of Tomorrow was yesterday with this plan in it? And we asked them to read the book, and we asked them to read the plan, and we asked them to set up a task force solely to address serious mental illness and a national plan. We need a national plan. We can't have an army program there and a court program there, and a California Prop 63 here. I mean, it everything is piecemeal. We need a national umbrella, national plan. So, like the uh grassroots plan that we put together, this White House project took off. And I think probably in two weeks we've gotten representatives from all 50 states who are sending, some are sending multiple, some are sending it to all five. So we targeted President Biden, Vice President Harris, Dr. Jill Biden, Ashley Biden, because she is a social worker and has an interest in mental health, and Xavier Briserra, who is the new nominee for health and human services. So I said it doesn't matter if they get multiple copies, that'll just make a bigger impression, and they can share the copies once they get them. And so I think we have 50, we have at least one representative from every state, but I to my count, and I'm losing count because it's still going up, about 130 books are being sent to the White House, to one or all of those five people, asking them for those three things. Read the book or read the stories, read the plan, set up a task force for SMI.

SPEAKER_00 30:32

So these books are being sent to the president and vice president and those members of the cabinet, or are they being sent to senators and representatives?

SPEAKER_01 30:40

They're being sent to those five people that I mentioned. Some people are doing both. They send they're sending one to one of those five people, and then they're sending, they're also being sent to local and state representatives. Um the focus of this effort was really let's just bombard the White House. But people are it's fluid, and people are sending them to other representatives also. Amazing.

SPEAKER_00 31:02

Mindy, can you comment? You've spent many years in the state legislature. Can you comment on what might have happened if your state legislature in Minnesota had been bombarded with books with stories like this?

SPEAKER_02 31:16

Well, anytime legislators are bombarded with things, with materials, um, it's helpful. And when I was a legislator for 20 years, often we would get educational materials and books and magazines or reports. And I think they all are kind of like Chinese water torture. You know, the more you get, the more you notice. And the topic of mental illness is not the one that you often get bombarded by. So this is, I think, a new topic, newer topic to get lots of people speaking out. And so I compliment you, Didi, on getting, I know somebody, some people, you know, you mentioned the legal process, so they didn't want to be involved. But I noticed even some who are involved used initials or, you know, their first name or something. But a lot of people, most people, use their real name. And I think that's to be applauded because if we want to have people pay attention to serious mental illness, then we have to speak out as well as you are doing so well. And that really helps. I think that then there needs to be some follow-up as well, because legislators, and I imagine the White House is even busier, you know, they don't have time to read as much as we would like. So the fact that these are short stories and punchy, even if they didn't have time to read the whole book, they could page through and read some. And because they're all so poignant, I think that that it will have an impact.

SPEAKER_01 32:52

Several people have said, um, okay, they're getting bombarded. So they're sending copies to Doug Emhoff, who is vice president Harris's, he's the second gentleman. Second gentleman. And I'm asking everyone, once they send the books, to send to Whitehouse.gov contact an email to the White House to say, I put a book in the mail to you today. It has a cover letter inside, has a picture of my child inside. Please get it to the recipient. I think that's just another way to draw their attention and just for them to be able to see these books are coming from all over the country. So I hope a lot of the participants will do that.

SPEAKER_00 33:31

We are going to actually just visit the top five in the list, but I want to ask Mimi and Mindy. I've been asking a lot of the questions. Is there anything you wanted to ask Didi about her son, her experience as a mom? You know, anything, any questions we haven't asked about Patrick or about Dee Dee before we go on to these issues?

SPEAKER_02 33:50

I would like to ask Didi, if you are willing to share, if you could of all these problems in this book, I haven't read your first book to hear exactly about your son. But in this book, and you've got the five things to work on

HIPAA Reform: a much-needed Top change

SPEAKER_02 34:07

in this plan, but if you could name the top one or two things that if they had been changed, they would have made a big difference for you and your son. What would those things be?

SPEAKER_01 34:18

Well, let's see, I'm looking at this list here. It's number two, it's reform HEPA. That would have been huge because the last week of two weeks of his life when he was in the hospital, I literally could not get anyone to talk to me. I couldn't get a doctor, I couldn't get an administrator. I could not get through to anyone. And they shipped him out of county. So he wasn't close by. And the day before he died, some young woman secretary called and said, What is your discharge plan? And I lost it because I said, I don't have a discharge plan. What are you talking about? No one has given me any information. I don't know what's happening with my son. And the next morning at nine o'clock, the phone rang, and finally a doctor came on and said, I'm sorry your son passed away 10 minutes ago. That was the first time a doctor or anybody had talked to me. So HIPAA would have, I don't know if it would have saved his life. The other problem was that young woman who called me, she said, Well, what has worked for him in the past? And I said, I wasn't given any of that information. He was very private. My son was. He wanted to handle everything himself. I said, Don't you have, because he had been in Kaiser and they transferred him out of Kaiser to another hospital system. I said, Don't you have his records? This is like 10 days after he's been transferred from Kaiser. Oh, um, I don't know, that's a good idea. I'll check. So I mean, HIPAA. That's just one example.

SPEAKER_02 35:59

I hate HIPAA, and that's the most extreme tragedy I've heard as a result of it. I mean, I don't hate it for you know, people that know what they're doing and can handle their own things, but for vulnerable people, I hate HIPAA.

SPEAKER_01 36:16

Yeah.

SPEAKER_00 36:17

Do you think there's anyone listening who doesn't know what HIPAA is? Or can we just leave HIPAA?

SPEAKER_01 36:22

It's Health Insurance Portability and Accountability Act. And it, I guess the intent originally was good. It was to give people some privacy, I guess, you know, so your health records don't get published everywhere.

SPEAKER_00 36:38

I don't know what the original I believe it was especially for job applications so that it wouldn't interfere with with the with the job hunt, but it has certainly been But it's just morphed into something that's insidious and and practitioners are afraid of it.

SPEAKER_01 36:54

They think they'll get in trouble if they talk to you.

SPEAKER_00 36:56

Or I think one of the first things when we teach family to family is we remind families, even with HIPAA, if they think they can't share information with you, you can certainly share information with them. And that was probably the first most helpful tip I ever got as a family member. And I will call and I'll say, I've sent videos of my son when he's well, just so they can see who they're saving. Like I will share with them. And we will have an episode where we talk about conservatorship and guardianship and whatever it is in each state, because I am allowed to get information because I renew the conservatorship every year, sometimes against my son's wishes. But not everybody has that or knows how to do that. So I know families that would call the hospital and they would say, We can't tell you that. And then they go, Well, if you could tell me, what would you tell me? And sometimes a nurse will slide it in under the radar. Well, if I could tell you, I would let you know that there is someone by this that name there, but I can't tell you that. Like they'll kind of sneak it in. But HIPAA is misunderstood and certainly not as appropriate for people who don't know that they're ill, for people who don't aren't in their right mind, who won't sign a release, whereas somebody with cancer would. Well, of course, I want my mother to help.

SPEAKER_01 38:12

So so that's just a little footnote. Well, we Pat had done everything right. He had actually sent signed an advanced directive. And my brother and I were on the advanced directive, and the doctor did call my brother, or my brother called the doctor, I don't remember, had a five-minute conversation once. And once when I was trying to get through, someone said, Well, the doctor talked to your brother, and he doesn't have time to talk to everyone. So even though we had an advanced directive with my name on it, I still couldn't break through those HIPAA.

unknown 38:45

Yeah.

SPEAKER_02 38:46

And what other illness would they tell a mother that to?

SPEAKER_03 38:49

Well, you know, I have to say, the thing is too, that when you really take apart HIPAA, I think that doctors and the medical profession are kind of hiding behind it at this point. Because imagine somebody with Alzheimer's. When you go in, if your parent, if you're mother or father and you're the child and an adult and they have dementia, they don't send you away. They share information with you, they let you help the your parent. But when you flip the script, it's a whole other ballgame. And that they just opt out of sharing. I mean, imagine if if your mother or father had dementia and was out wandering around. Imagine a hospital just releasing them into the night. Well, they do that every day with people with mental illness. We hear these stories every day.

SPEAKER_00 39:36

Yep, and the book is full of them. So we've talked about HIPAA, and in part two, we're going to talk about the other top four. So I hope you'll join us. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, 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.