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.

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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The “Interfering Family” and Mental Illness: Some Helicopters Save Lives

 

I never wanted to be a helicopter parent.  When my kids were younger, I often responded to their problems with a “mean teacher”, “unfair boss” or “fickle friend” with a well-rehearsed “wow, that must be tough. How are you going HelicopParentsto handle it?”  This was not easy, mid you; parents want to fix things. But I did my best, and the “hands off” approach usually yielded the best results in terms of self-sufficiency.

But when your child has a mental illness, all bets are off – especially in times of crisis.  Although most of the laws in this country deny our family the right to “interfere” in my son’s life, we do it anyway. At least, whenever we can – if we feel we must.

Ben is 33 years old, and was diagnosed with severe paranoid schizophrenia at age 19, after years of chaos and uncertainty. We tried letting him “experience his own consequences” for years before that, with results that were ineffective at best, disastrous at worst.

If you live in our town, you might know Ben now as the best server in a local restaurant, where he has worked for nearly two years.  He’s also the one presenting his latest poetry in community college Creative Writing class.  You might see him at Starbucks, just hanging out with his morning coffee, or doing karaoke or bowling with friends.  But, not that long ago, he’d have been the one wandering the streets, or the halls of the psychiatric unit at our local hospital – unreachable, glassy-eyed, talking to his voices.

How did he get from hospitalized to hired?  I give Ben a good deal of the credit. Continue reading The “Interfering Family” and Mental Illness: Some Helicopters Save Lives

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What if Target’s Sweater Poked “Fun” at Cancer?

What if it said "Christmas cancer. My spending is growing uncontrollably"?
What if it said “Christmas cancer. My spending is growing uncontrollably”?

Is really “just a shirt”?

This week, social media has been abuzz with two “holiday” issues so far: the Starbucks Cup ( and there’s not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. “Obsessive Christmas Disorder.”

Mental Health Advocates are up in arms about this “joke”, which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say “oh, get a life, it’s just a harmless joke.”

But what if the sweater read:

 I have Christmas

Cancer.

My spending just keeps growing out of control.

I ask you, what then? Would anyone be supporting Target’s “right to make a joke”? Continue reading What if Target’s Sweater Poked “Fun” at Cancer?

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Thank You, John Oliver. And I apologize.

Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds – with plenty of room for punchlines as well. I know – seems like something that isn’t humorous. But this segment provides more respect for mental health issues than so many others I’ve seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

“It seems there is nothing like a mass shooting to suddenly spark political interest in mental health.”

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on “judging” this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way) Continue reading Thank You, John Oliver. And I apologize.

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Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to “handle it” alone. Duh, again. Been there – am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment. Continue reading Chris Harper Mercer: A Preventable Tragedy?

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