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Mental Illness in the Family

Randye Kaye
My brain is still absorbing all I have learned, ideas I've been introduced to, and the amazing people I met at last week's NAMI National Convention. (read Hold onto the Hope: NAMI National Convention) I'll do my best to share some of this wisdom with you here, as I file these amazing possibilities  next to the reality of my son Ben's current relapse. The nurse on the psych unit where Ben is still a patient calls to inform me that Ben has been in "an incident." My pulse jumps up by about 20 beats - what Dr. Jill Bolte Taylor would say is my amygdala sensing that "I am not safe" - and I ask for details.
Randye Kaye
"Hold onto the hope and keep moving forward." Those are the closing words I remember from the last speaker this morning at the NAMI National Convention's education session. All of us in the standing-room-only ballroom were there to honor the various education and support programs that NAMI offers. Consumers, providers, family members and NAMI staffers were invited to offer their stories, and tell how programs like Family-to-Family, NAMI Basics (for families with younger children), In Our Own Voice, Peer-to-Peer and more affected our journeys. Wow. How we all need education. How we all need each other.
Randye Kaye
My son, Ben, lives with schizophrenia and was doing well until his recent sudden relapse. Of course, we are doing everything we can to bring Ben back from his first schizophrenia relapse in over six years. The process reminds me of what I believe have been the four cornerstones of Ben's recovery from Schizophrenia - all of which were removed too quickly. Recovery from a mental illness is possible, but only if attention is paid to the human being behind the illness. Watch and let me know what you think.
Randye Kaye
Tops in the NY Times this week are reactions to last week's story about Deshawn James Chappell, a man with schizophrenia accused of killing one of his caregivers in Massachusetts.  There are those (like our family this week, with Ben back in the hospital after six years of success) who experience first-hand how a cutback in services (to save a penny in the budget) can result in a much-more-costly hospital stay, and the necessity to  repeat recovery steps that had worked before. This doesn't even address the human cost. Still, how much worse when the outcome is a horrifying tragedy like the one in reported in the Times; one that many agree could, and should, have been prevented by proper care. Among the points made in the reactions: From a letter signed by John Olham, President of the American Psychiatric Association : "only a very small percentage of people who live with schizophrenia ever become violent, and then it is usually when the treatment system fails them and they discontinue their medications. " Marilyn and Edwin Andrews of Massachusetts wrote: "When politicians try to balance serious budget problems on the most vulnerable among us, we all pay the consequences. The mentally ill may not have the influence of the wealthy or the cachet of popular programs, but they most certainly need comprehensive, decent care. " Solutions? Better care, managed well, can prevent so much relapse.
Randye Kaye
It feels like we stepped into a time machine and it's 2005 once again .  That was the last time Ben was admitted to the psych ward in this hospital. And now, we're back.  I've gone from stone-faced shock (Friday) to tears of helplessness and grief (Saturday), to a determination to enjoy Fathers' Day despite the fact that Ben can't be with us (today). And now, with all distractions gone, it's early in the morning and I can't sleep.  My head is spinning with all I must do tomorrow to try and bring Ben back to life again. If I can. Logic tells me that my control is limited at best: this is Ben's journey, these are Ben's decisions. He has somehow managed to stop taking his meds again, and now it's as if the past six years of success - college classes, increased responsibility, full participation in family, and finally employment - are all in jeopardy. But the mother in me is absolutely livid.
Randye Kaye
So far all my posts here have been from the parental point of view.  As you may know, I am the mother of a wonderful kid, now 29, who was unlucky enough to develop paranoid schizophrenia in his mid-teens (diagnosed at last by age 20).  My book Ben Behind His Voices, is told mostly the parental perspective - though writings from Ben himself as well as  from his sister, Ali, round out the story as best we can. The title of this blog, however, is Mental Illness in the Family - and so I don't want to leave out the experiences of siblings, spouses, and children.  This post is about - and for - you. I have taught NAMI's Family-to-Family course over a dozen times, as both teacher and trainer (guiding others to becomes teachers in Connecticut), and each time I am reminded that my experience as parent shares much with the other "relative groups" - but not all.
Randye Kaye
The New York Times Book Review article is entitled: The Epidemic of Mental Illness: Why? (June 23, 2011, Marcia Angell) This is the first of two parts, reviewing several books which plan to explode the belief that mental illness is caused by chemical imbalance in the brain. Instead, these books claim, the imbalance of neurotransmitter levels in the brain only appear after psychiatric medications have been administered. They point to the standards allowed by the FDA which permit drug companies to get approval for new medications, as long as they have proof of two studies showing a positive effect - no matter how many studies also were made, showing no improvement at all vs. placebo. Okay. I'll bite. But as further evidence that new drugs are "creating" more mental illness symptoms than curing them, the article states that Robert Whitaker, author of Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, contends that, in the past: "conditions such as schizophrenia and depression were once mainly self-limited or episodic, with each episode usually lasting no more than six months and interspersed with long periods of normalcy" Really? I mean, come on. Listen, all I can go by is my own son, and the illness I witnessed as it slowly developed, progressed, and took hold.
Randye Kaye
I have a big speech to give in two days. Fellowship Place in New Haven, CT, whose mission is to “help adults with mental illness lead more meaningful, fulfilling and healthy lives by offering resources, education, and opportunities,” has asked me to be their keynote speaker for their Eighth Annual Dr. Albert Solnit Memorial Lecture. This is not so much a fundraiser as it is an awareness-raiser, and I want to do justice to that purpose as I prepare my part of the evening, an hour-long “Conversation with the Author of Ben Behind His Voices.” My problem: how to tell our family’s story, and Ben’s story through our eyes, in a way that will raise awareness? And while I blog often about our current issues as Ben struggles through recovery, for this presentation I need to go back to the early years of his illness to set the stage for the conversation.
Randye Kaye
When mental illness meets recovery, does community matter? You bet it does. I just returned from a meeting with my son's new support team. This meeting was demanded by the the Wicked Witch (me, in this case), who was upset with the way the transition was handled from group home to supervised independent housing.  In the space of two weeks, I've seen signs that Ben is lost, lonely, unmotivated, forgetful, swinging from depressed to hyper, and probably not taking his meds when he can get away with it. Schizophrenia still looms underneath all the progress he's made. Back and forth went the conversation, over and over again. me: Where was the support for Ben's transition from 24/7 supervision to independent living?
Randye Kaye
A message comes to me via social media, along with an invitation to connect. It simply says, "My 27 year old child has schizophrenia, but will not get treatment." Oh boy, can I relate to that. Unfortunately, this is a major dilemma facing all of us who deal with mental illness in our families. Parenting is always about the precarious balance between stepping in to help, and letting go to allow learning from experience. From a child's first steps to his or her first relationship, car,  job, apartment...when to give advice? When to help? When to step back and watch them sink or swim?