Tag Archives: Family-to-Family

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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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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NAMI Palm Beach Keynote – Support, Education, Acceptance

Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL – a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

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Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

The stage on rehearsal day
The stage on rehearsal day

I’ve just returned from Warsaw, where I was honored to have the chance to speak to a global audience

With Pete Earley
With Pete Earley

about our family experience with schizophrenia and recovery in my son Ben – and to have shared the stage (well, one at a time…) with the wonderful Pete Earley, author of Crazy: A Father’s Search Through America’s Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.

So, for newbies to this site, here is a “nutshell” version of our path so far. I wrote this to send to NAMI, for possible media interest.

So – the “movie trailer” version of where we’ve been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well – but it has been a long road, and we almost lost him several times – so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves – to make sure things continue to go as smoothly as possible.

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NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I’ve had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

  • learn about and accept my son’s illness
  • know that I was not alone, and
  • find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness “consumers”, others say “clients”, or “patients”, or “individuals”…and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

namiSummitbusLast week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed “From Chaos to Hope.” So close to the subtitle of Ben Behind his Voices…it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social citlogowork professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening’s Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it’s properly supported. Continue reading NAMI: How Strong Can an Affiliate Be?

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Lost chapter: NAMI Family-to-Family, Experiment

Between the first draft of Ben Behind His Voices Family-to-Familyand the final one that went to publication, a few chapters (well, about 100 pages) were on the literary equivalent of  film’s “cutting room floor.”    Here is one of the “lost” segments, from a NAMI Family-to-Family class I was teaching at the time.


May of 2004

I’m teaching my fourth Family-to-Family series, and this group decides to try something different. They vote to invite the “ill relatives” we’ve been talking about for nine weeks to attend the class on Recovery and Rehabilitation, where a guest consumer speaks.  They want their relatives to hear the stories. This is unusual, but this class wants to do it; so tonight we are joined by about five of the people we’ve only heard about since February. Ben is one of them. It feels odd, their presence in the room – one of the most effective things about F2F is that, for once, the family members get to be open about themselves, honest about their own sorrows, frustrations, and hopes.  This is the one place where they don’t have to be conscious of how their words will sound to the person whose illness has caused all those emotions.

I, too, feel self-conscious with Ben in the room. Does he disagree with what I’m saying?  Will he rebel against the idea that I hope for a “recovery” from an illness he doesn’t yet accept? Will this help him, or set him back?

I watch our guests during the class. Most are young adults, but not all.  They listen to our speakers, ask some questions.  They offer some insights, and also some resistance. We are, in reality, not expecting to “convince” them, but we’re still hoping something may sink in sooner or later.  I know I am. You never know.

The best part of the evening comes, unexpectedly, during the break. While all the family members are inside the room, talking with the guest speakers around the snack table, our relatives have taken their snacks into the hall and are talking to each other.  They’re in a circle, and they are talking.  I don’t know what they say to each other, but I do know that my heart lifts at the sight.

They are not alone; they are not so different.  They need more of that comradeship. They need each other.  There are so few support groups for teens and young adults with mental illness, unless they’re in the hospital.  Perhaps, like all young adults, what they need most of all is a healthy peer group that can make them feel like a part of something, and can inspire them to take one more step in the right direction.

I plant seeds. I plant seeds of insight and I hope someday they will grow.

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Call Me Crazy: You Are Not Alone in this Fight

Cast of Call Me Crazy

Lifetime is premiering a new film this Saturday at 8 PM:  

 

Call Me Crazy and I can’t wait to see it. I hope you will watch it too.

 

Here is the description from Lifetime:

Through the five shorts named after each title character — Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. “Call Me Crazy: A Five Film” stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology

NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in  This Fight.

As I myself prepare to visit Ohio, New York, Louisiana, Michigan, Connecticut and Tennessee in the next few weeks to share our story for Mental Health Awareness Month, I am thrilled that the messages will reach way beyond personal travels and speeches to reach the wide viewing public.

 

Here is the story I shared on the NAMI site:

My son has experienced what I later learned is a fairly typical gradual-onset  pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again – but that hope is always guarded, affected by stigma, caution and some sense of loss.

One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience – and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.

Bravo to Lifetime – I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.

Randye Kaye

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NAMI in the Community: Lifeline for So Many

This video, created by Barmont Productions for NAMI in Connecticut, shows in seven short minutes a smattering of some of the ways NAMI has made a difference in the lives of people living with mental illness, and their families and friends. In it, you will hear a small taste of why Ben Behind His Voices is dedicated in part to NAMI’s wonderful work: education, advocacy, empathy and more.

As the host of this piece, I got to interview so many amazing people, and can only wish that the hours of footage we got might someday get re-edited into a documentary of 30 or 60 minutes, to pay homage to the many stories courage and love that I heard that day. Meanwhile – watch and enjoy!

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The Parents Network: Eyes, Ears, Heart and Soul

bipolar nation schofieldYesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child’s Descent into Madness, and Her Father’s Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can’t tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben’s first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don’t know how we would have survived. Thank you – for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche – because, like many cliches, it is true.

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Schizophrenia, James Holmes, and Hindsight

I think the psychiatry career of  Dr. Lynne Fenton may be over.

Worse than that, she must be questioning whether she could have done anything to prevent the “Batman shootings” in Aurora that killed 12, and wounded many others.

James Holmes: Schizophrenia?

So it leaks out that shooter James Holmes has been in “treatment” for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.

The question, though, is this: what kind of “treatment” was he getting?

According to this PBS Report, and interview withCAROL LEONNIG,  of The Washington Post

james-holmes-court-pictures
Holmes in court

“(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.

And she was seeing him for some time before this tragic event…Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia.”

What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay – whether he “wanted to” or not – if there were any signs of this possibility of violence.

Could Treatment Have Prevented the Tragedy?

This leads us to the issue of “Assisted Outpatient Treatment” well-covered by the Treatment Advocacy Center – so I will say no more about that in this post.

But there is also the issue of James Holmes’ family life. Continue reading Schizophrenia, James Holmes, and Hindsight

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