No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI’s Family-to-Family Course

Where truth, support, and hope began: NAMI’s Family-to-Family Course

Now: Ben made the Dean’s List again! The letter from our local community college confirms his status and adds, “It is a a very worthwhile accomplishment to have become one of our best students.” For the first time in over a decade, Ben actually cares about his grades;  there was a time he considered report cards a government plot to control him.  Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he “didn’t like the stupid rules at home.”  Sometimes, then, he slept in the park.  My son, homeless and hopeless. His family: confused, devastated, always at our wits’ end. 

Recovery takes time – and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family.  This program – one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.

It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not “stubborn”, or “going through a tough adolesence” – he was ill, and it wasn’t his fault.  What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.

I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours.  For free. Still, so many families don’t even know what it is.  I urge you to find out.  Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate.  Click on “education” and there you are.

Find NAMI. It’s something you can do for yourself – -RK

Excerpt from Ask about Ben Behind His Voices: One Family’s Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)

In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.

I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.

I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.

I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.

Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact – that proven, medical fact – is a major hurdle for many family members to accept, for it means two contrasting things: one – that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.

With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.

3 comments:

glory said…
Randye, your blog is wonderful. It’ll be a lifeline to families challenged by schizophrenia. 

February 22, 2010 8:32 AM

Randye Kaye said…

thank you! that is the hope – 

February 22, 2010 3:01 PM

Logicmaven said…

Trying to understand it all. 

Things were looking up. My boy seemed to be doing much better — much clearer, much more in focus. I started to wonder if it was all in MY head; after all, he hasn’t had a formal diagnosis in almost ten years. It seemed like things were moving toward “normal.” We spent some wonderful days together laughing, visiting the MoMA, remembering how alike we are and forgetting how different. I tried to gently push him toward mental health care — he refused.

Then he took off again. He’s back in the city, “staying with friends.” He calls me at night to tell me he’s cold, to complain about not being able to get seen at the methadone clinic, to tell me he’s hungry but he’s not coming home.

I don’t know how I would survive without the support of friends.

Thanks, Randye, for being there. Thanks for telling me about NAMI. Your words help so much.

March 2, 2010 11:19 AM

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI’s Family-to-Family Course

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2 thoughts on “No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI’s Family-to-Family Course

  1. Dear Randye,

    Thank you for your book and your blog. Just another resource when I need it. As I am continually searching.

    My daughter told me once,”you will write a book”. I haven’t, but as I read yours, I thought, this is “my” book! So many of our stories the same. Thanks for putting it out there for others to see. It has also encouraged me to become a Family to Family instructor. I am on the list. I am hoping through my activity it will encourage my son to “help”. He is so much like Ben. Smart, creative and caring. He is compliant with meds however, I am hoping to encourage him into a social group ,and hopefully it will lead to an independent living situation.

    God bless you and your family. God bless us all.

    1. Thanks, Carol. I’m so glad the book was helpful – now you don’t have to write one! Thanks for turning your experience into advocacy by teaching Family-to-Family too – each time I have taught it, I have learned more too. Your son is at a good place for today, if he is compliant – yay! The rest…well, it takes patience as you well know. I think it took Ben several years to begin to make friends again, and it is a joy to see him finally interact with others his age with some confidence – depending on the friend. But that’s true for us all. Hang in there, stay grateful when you can, hope for the best, and know it may come slowly….but there is hope, and resilience, to get us through. Bless you too!
      Randye

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