All posts by Randye Kaye

About Randye Kaye

Author, "Ben Behind his Voices." NAMI Family-to-Family Educator. Voice Talent, radio broadcaster, stage actress/singer, speaker. Voice-over and on-camera work in commercials, industrials, TV, film, phone systems and audiobooks.

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

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.

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Schizophrenia: Back in the Spotlight at Last?

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.

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Corona Virus Quarantine -Will it Reverse Mental Illness Recovery?

As I write this, I realize it has been quite some time since I’ve posted.

Why? Because things have been remarkably stable — or maybe we’ve just finessed our ability to adjust to Ben’s illness. It is what it is. There have been a few blips, to be sure, but with fingers crossed every day we buy another 24 hours of relative normalcy by supervising the treatment my son still doesn’t – and may not ever – believe he needs.

Ben’s recovery (used in the same frame as an addict defines recovery…an ongoing process, one day at a time, with constant awareness and vigilance) has been framed by the four pillars that hold his life up. (Hold all of us up, actually): Treatment, Purpose, Structure. Love/Community.

And then Covid-19 hit. Ben’s job (restaurant server, full-time) disappeared – and along with it, 3 of the 4 pillars have toppled or at least been weakened.

Plus – he doesn’t understand why he can’t see his nieces and nephews. To keep some semblance of sanity, Ben goes out to see some friends in their homes. Germs, risk, but where do we draw the line? Now I must remain socially distant from my own son in our home – even when he offers a hug.

The tightrope walk continues.

I’d be lying if I said we weren’t concerned about Ben’s precarious mental health, on top of all the shared concerns that have come with coronavirus and quarantine.

And so we wait, watch, and supervise. Just more than usual.

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Partnering with Researchers for Brain Awareness Week 2018

“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!

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Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn’t easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it’s easy to feel hopelessly tangled up all the time. And that’s on a good day. On a bad day? We live in fear.

We fear – for our loved one’s life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us – well, as of this writing, we’re still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift – a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I’ve written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families – and parents specifically –  face when schizophrenia moves in. Continue reading Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

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What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family’s openness about Ben’s mental illness.Education is Power

Recently I came across this guide from Juno Medical, and it explains it all really well!

 

 

 

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction – or no reaction at all – to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

  • Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER!

 

 

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Another Mom’s Story of Schizophrenia in Her Son – and Suicide

Book Review: Losing Aaron

I keep thinking of the line in a Phil Ochs (google him:) ) song:

There but for fortune go you or I…

This book is a painful reminder of how fortunate we are to have gotten some extra time with Ben – and of how schizophrenia can happen to any family – rich, poor, educated or not, you name the adjectives. Schizophrenia does not discriminate.

Every family member with courage to share their story about mental illness in a loved one Losing Aaron Bookopens the door of understanding just a bit more – and that can help reduce stigma and spark action to help those with mental illness and their families. The author begins with the fact of Aaron’s suicide, so we know where this is headed and yet we still root for Aaron – and his Mom, Dad, sister and stepdad – to get the support, education, and understanding needed to change the outcome we know is inevitable.

Alas, that doesn’t happen – but Ingrid Blaufarb Hughes opens her heart to us as we share in her confusion, frustration and helplessness in the face of a devastating illness that seems to steal the soul of someone you love.

The pearl in the oyster here is the love the family has for Aaron, and how they do their best to support him in the only ways they know how, even though he consistently refuses the medication that might have changed his life.

I know that love well, as it is what keeps our family going too – and we know we are fortunate that my son Ben follows the “house rules” of taking his medication each day, under our supervision. Any day he could choose not to (as he, like Aaron, doesn’t think he needs it) – and we have seen too many times where that would lead us: straight to the hospital, and down the chute to square one again. This book renewed my gratitude for the extra days we have gotten with Ben – days that this author’s family was denied. Her pain and love, and her struggle to also live her own life as writer, wife and mother – are honestly told.

It also reminds us of the importance of education, support and acceptance – the earlier the better. Could Aaron have been saved? I don’t know. But I know I am so grateful (thank you, NAMI Family-to-Family) for education I got into Ben’s illness, which equipped our family to do more to help. It doesn’t always “work”, but education increases the odds of success.

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The Precarious Jenga Tower of Life with Mental Illness

Jenga_distortedMy son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds –  and has held a job he loves for over two years.

What she hadn’t realized is this:

Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand. Continue reading The Precarious Jenga Tower of Life with Mental Illness

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Treatment Pays Off in Schizophrenia, Even if “Unwanted”

One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says “I am afraid of my own son now.” According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said “no thanks.” And nearly killed his parents.

My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work.  He has been a server at the same restaurant – full-time – for over two years.

In Ireland, a man is finally committed to a mental health facility – after killing his parents with an axe. This treatment comes, obviously, way too late.

My son’s phone constantly rings with texts from friends, who are trying to arrange a “game night” at home for
tomorrow evening. Now he has friends again – but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.

Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to “go back on meds”, after which he moved back in with us – with strict rules to “follow psychiatrist instructions.” Why? There was no other way we’d allow him to live with us.

some of the latest info on schizophrenia treatment
some of the latest info on schizophrenia treatment

The truth is: treatment makes all the difference. That’s why we, Ben’s family, “require” it in order for him to live with us. And, yes, we supervise it – staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen – messy bedroom, sloppy compliance with curfews, uneducated financial decisions – even though Ben is 34 years old.  Not always fun, but we’ll take this level of challenge. It’s annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have “problems” like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day. Continue reading Treatment Pays Off in Schizophrenia, Even if “Unwanted”

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