Tag Archives: schizophrenia

He’s Out! But For How Long? Family Input Ignored.

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Mom and baby hands
It was so much easier then…

“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”

I have this recorded on my iPhone. 

Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.  I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure. 

It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.

 I was right. Unfortunately. Shit.

Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother’s heart that hurts for my son and all he’d lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked…for awhile.

Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized – but not on the medication that had brought him back to a place where he could work as a restaurant server….and fool people into not knowing he has this devastating brain illness: schizophrenia.

No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still…), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects. 

Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.

Continue reading He’s Out! But For How Long? Family Input Ignored. →

Schizophrenia: 3 Moms in the Trenches Podcast

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In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam “Mimi” Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.

So – we met each other (virtually, of course – what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us – and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia – if they are in a place to want to hear about our side of the story.

Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) – but our hope is that the content is there for whomever is ready to hear it.

audio podcast or YouTube video

Here is the description:

Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone…and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) 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”)

Podcast can be found here:

YouTube  (please subscribe to be informed as each weekly episode comes out!

Thanks!

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

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Hope or Desperation?

One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again.  

Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had  worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering.  

How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family. 

But there’s only so much you can do if he backwashes into the water and then swears he didn’t. 

We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever. 

Continue reading Five Months a Patient (Psychiatric Unit): Daring to Hope Again →

Breakdown: The Right Title for a Much-Needed Book

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I’ve often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.

Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.

I had to sharpen my pencil several times, I underlined so many facts and observations.

Five Shocking Facts

Five things that either stuck with me or surprised me – and, after nine hospitalizations for my son Ben, I thought I knew it all…

  1. Often the “easier-to-manage” psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage.  Those admitted include “malingerers” who just want to get off the street for “three hots and a cot” and can fake psychosis.
  2. Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.
  3. Yes, untreated schizophrenia can increase the incidence of violence.  And often, when the voices tell a schizophrenia patient to harm someone, it’s someone they know…and usually love.
  4. Regarding RLC’s (Recovery Learning Communities, often staffed by “peer specialists who endorse the possibility that signs of psychosis are normal”):  ” Researchers found no significant benefits…to help the seriously mentally ill population”- of which my son is one. I live in fear of those who would try to “teach” him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)
  5. Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and “stigma” was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.

Continue reading Breakdown: The Right Title for a Much-Needed Book →

“Fix What you Can”: Apt Philosophy for Family Mental Health (and book review)

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Mindy Greiling and I have many things in common, though we’ve never met. The biggest shared experience: we both have sons with schizophrenia, and we haven’t given up on them. As she says in the epilogue of her new book,  we are “the best mothers we can be.”

 

As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And “happy endings” are, often, only fleeting respites from trauma, until the next chapter begins.

Still, we love.

Still, we hope.

Still, we fight.

Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative – a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She’s received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud. 

But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family’s journey, and also her work to enact changes in the system.

I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don’t).

When  I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps.  Since then, I’ve seen (and read) quite a few – and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about  advocacy and the way things work in the world of state legislation. 

Mindy Greiling is a fine writer – you’ll keep turning the pages. You’ll feel less alone, if you share this issue. And you’ll get a really accurate ride on the roller coaster of  family experience with “recovery” – what happens after someone with severe mental illness is treated and released? I know this ride all too well – am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success. 

Highly recommended.

 

 

Noah’s Schizophrenia: Review

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Like many memoirs about a mother’s experience with her son’s schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support…all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity – the club we never wanted to be in.

What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine….a primer for the vast education a family needs to cope and help.

For me, this may not have been the easiest read on this day when my own son’s Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing…what will happen to mine?

In one terrifying and frustrating scene, she shares her thoughts as Noah’s symptoms worsen: 

As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.

Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben’s sweet nature abounds. When he refuses meds? I don’t know how long before the voices take over.

The author’s son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.


I can relate. You, I hope, will too. She searches for “the truth” throughout this book, and all of us hope and pray it can be found.

 

He Came in with It: Book Review

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Miriam Feldman’s wonderful book will be released tomorrow, and I highly recommend it.

Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere.  I have read many of them, and Miriam’s memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.

Plus she made me laugh out loud – something you wouldn’t think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your  beloved child.  But you can, and we must. 

Miriam Feldman takes us through  the facts,  the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.

You will fall in love with her son Nick, and grieve the loss of what might have been…and hope for what might be. As I do every day with my son Ben.

I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my “Power of Kinship” conversations. 

 

Hope you’ll read this book!

Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

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What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road – also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia – and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma – is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family …and more.

Schizophrenia: Back in the Spotlight at Last?

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Oprah’s latest book selection, a new memoir, and HBO’s series with Mark Ruffalo – is schizophrenia finally going to get the attention it deserves?

Of all the SMIs (Serious Mental Illnesses) in the news lately, schizophrenia always seems to get the short shrift; it’s like the last mental illness in the closet. 

Unless, of course, there’s a horrific incident of violence. Then the questions about sanity begin…and often finger-pointing at schizophrenia. And then, advocates like me have to bring out the statistics to defend our loved ones: 

  • No, schizophrenics are not “more violent”
  • No, schizophrenia does not mean “split personality”
  • No, it’s not the fault of “bad parenting”.

Currently, this brain illness is back in vogue with three exciting spotlights:

Will these open eyes at last?
  1. Oprah’s book club selection is Hidden Valley Road by Robert Kolker – about a family with 12 children – 6 of whom developed schizophrenia
  2. HBO has begun airing the mini-series based on the wonderful (and devastating) Wally Lamb Novel, I Know This Much Is True.
  3. A new memoir is to be released next month:, He Came In With It, by Mimi Feldman

And still, the myths – and lack of attention to research – continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley, 

A huge question looms:

"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"

I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or – worse –  worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.

Still, those of us who love someone with this devastating illness, who knew them before it took hold,  can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be – if only we could find a CURE, not just a management tool.

Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.

Let’s hope these three works of art will propel us toward the changes we need to see – and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.

We’d give anything to see their joy again.

Partnering with Researchers for Brain Awareness Week 2018

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“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”

You can view the story here!