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.
I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience 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.
Our story? In a nutshell:
Bright, promising childhood - Ben was (is) bright, personable, loving
Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho
Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system
A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough
Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery
At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance
Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well". Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.
Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.
Message? Recovery IS possible - with four cornerstones of:
Medical Treatment
Purpose
Structure
Community/Love
The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially
!
