Mental Illness in the Family

I am doing an on-air shift at a radio station today - so have access to the NewsWire from the Associated Press. This just in: NEW YORK (AP) _ The mother of the man who killed 12 people at the Washington Navy Yard says she is ``so, so very sorry that this has happened.'' Cathleen Alexis said Wednesday in New York City that she does not know why her son, Aaron, did what he did and she will never be able to ask him.
Apologies to my readers, new and old,  for not having blogged for a few weeks. I was in London last month participating in an international conference on schizophrenia recovery, and lots of energy went into that experience. The conference organizers had read Ben Behind His Voices, and so I was asked to share my experience as family caregiver (or, in UK_speak, "carer"). As you might imagine, I learned a lot more than I shared. The main lesson, reinforced: When a loved one develops schizophrenia, feelings have no country borders. We do not stop loving when mental illness moves in. We do share feelings of grief, anger, confusion, determination, resentment, loss, helplessness, and more. I connected first with Georgina Wakefield, my UK counterpart in many ways.
Today, nearly two months since my last post about Amanda Bynes, she has finally been admitted for psychiatric evaluation. What took so long? This much I have personally experienced: until someone you love is of “harm to self or others”, it’s next to impossible to get him or her placed for evaluation. Unfortunately, sometimes by then it is too late. Yesterday, Amanda’s parents were finally able to apply for conservatorship – a decision that was delayed, as it looks like Amanda will stay under psychiatric care for at least two weeks. For this time, as I know all to well, her family will have a time to regroup a bit, breathe a sigh of relief that Amanda is safe for the moment, and gather strength for the fight that lies ahead.
Like a film of cloudiness that filters the sunlight on a hazy day, my son Ben’s schizophrenia obscures some of the qualities that make him so dear.  Without schizophrenia treatment, his abilities to connect, care, feel joy and share love seem almost impossible to see.  With treatment, they are closer to the surface – but the 25% of him that is still obscured is sometimes heartbreaking, no matter how grateful we are that he is functional and mostly present. The presence of these clouds is lighter then, more like a haze than the thick formations when he is fully symptomatic. Still, Ben’s best qualities often seem dulled by that haze -and I miss the open, joyful child I used to know. But sometimes, even the haze breaks – for an amazing moment – and I get a visit from Ben’s best self. Yesterday, I got a glimpse of his empathy, one of the qualities that get obscured as a negative symptom of schizophrenia. It happened because of a tin of lip balm and it gave me a moment of joy and hope. Why We Must Keep Developing New Schizophrenia Treatments
This month we are living with fingers crossed. Ben has had a close call, once again, with his symptoms of schizophrenia. We don't know how it happened, but somehow in late May Ben's med levels began to drop.  We saw the usual warning signs (agitation, self-talk, lack of focus, too-forced interactions, loud and constant music in his iPod, lack of desire to engage, etc.) and yet he kept insisting he was "fine" and "nothing is wrong." But we knew. And we ordered tests. The test result? Med levels near to zero. So we took new precautions, which unfortunately must include a lockbox for the meds. It feels like we have gone backwards in the quest for Ben's independence. And ours.
Last year, NAMI interviewed me for a story about my family's experience with mental illness.  In it, Jessica Edwards asked me about emotional survival, along with other lessons in our story so far. This is an excerpt from the interview, reprinted here because people have told me they found comfort in its advice. A Family's Journey with Schizophrenia NAMI: You discuss some really painful and difficult times in your story. What was the key thing that got you through those struggles? Kaye: These two mantras helped me a tremendous amount. They remind me to stay grateful in the moment, and stay in a place of acceptance and hope: It is what it is, now what? - and Whatever happens, we’ll handle it somehow.
Latest from Perez Hilton, the National Enquirer and other gossip (oh, excuse me, entertainment news) sites: "Is Amanda Bynes Schizophrenic?" Ignoring for the moment how much we hate that term "schizophrenic", let's get to the heart of the reported issue. Amanda is not doing well, and her parents are worried. How well I know the feeling.
Contrary to the popular saying, you don't have to be careful what you wish for. Wishes are dreams, and it's nice to dream. However, do be careful about what you expect. Unrealistic expectations can be the root of unhappiness with the reality of your life. My son, Ben, who lives with paranoid schizophrenia, used to seem lost to us almost completely...maybe 20% of him was occasionally glimpsed by us behind his symptoms.  Now, with treatment for schizophrenia, he is back with us - about 65-75%. Depends on the day. But I'll take it.
The past few weeks have been a whirlwind of wonderful interaction with people in treatment for mental illness and those who are part of their community of recovery. I will write more about the stories, struggles and solutions I've heard in Louisiana, Michigan, Tennessee, and (soon) Ohio, but right now I want to share the wonderful list from the BeST (Best Practices in Schizophrenia Treatment) Center at the Northeast Ohio Medical University.  I'll be meeting some families there on Thursday before I provide the keynote for NAMI Summit County's Annual Dinner, and I can't wait. Meanwhile, I found this list of tips on their website, and it's a great summary of some of the tips you can find here on  As Schizophrenia Awareness week approaches, families need all the tips we can get - and to know we are not alone in this fight to aid awareness and advocate. Early Detection is important in schizophrenia, and the more families and practitioners I meet, the more I am convinced that "Early education and support" matters a great deal for families, so they can become prepared to help as best they can. Otherwise, the confusion and frustration can result in families who end up just giving in to the frustration. So, in that spirit and with thanks, I share this list.
So, maybe I was wrong. Sometimes you just don't know. Yesterday Ben seemed a little bit off. We know the signs. He tries too hard to be "sociable" asking "how was your day?" three times in the space of ten minutes. His smile seems too forced, his attention to some tasks too focused.  He seems to be mumbling under his breath to - to whom? When I ask, he tells me he's just thinking about a song. Insert sigh here.  What might come next? And what can I do? Meds, or Mood? In the past, moods like this were usually precursors to worsening symptoms, and a sign that Ben was off his medications.  But we ourselves supervise the twice-daily regime, and Ben has been remarkably relapse-free for over 18 months. Still - something's up. Something is not right. But what? And why?