Tag Archives: schizophrenia symptoms

Diagnosis, Schizophrenia: What Came Next?

Interview on Conn Jackson’ show, Get Connected— he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.

Thanks, Conn! Here’s what he had to say about the interview on YouTube:

“Watch as Randye Kaye, author, tells us about her son’s struggle with schizophrenia and how she helped him though it. Why is Randye’s secret advice? Watch and find out!”

Listen to a Scene: Ben Behind His Voices

One week before Ben’s first hospitalization in 2003, I stopped by his apartment because he wasn’t answering my calls. This is what I found, from the chapter “Not Sick Enough.” Ben’s silent treatment, and his living conditions, were almost grounds for the Emergency Room- but not quite. Not yet.

One Small Glimmer of Hope: We’ll Take It

mental health bandaidsToday: a “discharge meeting” with City Hospital’s psychiatric team, and the case managers for Ben who come in with an alleged treatment plan. The hospital’s Chief of Psychiatry informs me that Ben’s self-talk is now so strong that he shouts back at his voices at times, and it has taken three tries for a group leader to get Ben back to reality. He is decompensating. The meds he is willing to take are not working. We knew that.

Ben’s new case manager, who had supervised (ha!) the transition from supported housing to independent apartment a month ago, does not look me in the eye. Not once.

Thankfully, the Doctor rejects the caseworkers’ new treatment plan for now – because Ben is simply not ready for it. I breathe a sigh of relief, and together we all work (well, mostly the hospital staff and me) to see what we can do now, while Ben is still in the hospital, to adjust his meds. Continue reading One Small Glimmer of Hope: We’ll Take It

Schizophrenia and Respect: Still Proud of my Son?

The last line of my book is this (no spoiler alert necessary, don’t worry):

I am proud to be his mother.

The question you may want to ask, now that Ben has had his first relapse since 2005: Are you still proud of him?

My answer, of course, is a resounding yes.

Hide and Seek

It’s harder to get in touch with the glow in my heart right now, I admit. That’s because there’s such a big knot in my chest when I think about the fact that Ben is currently starring in a rerun of his last relapse in 2005. Back in the same hospital, looking at me with suspicion instead of warmth, stubbornly insisting that his success of the past six years had nothing to do with Clozaril. He doesn’t like the way it makes him feel, he says. He is willing to try something else – that, at least, in an improvement over last time – but I wish he’d just skip all the trials that we know from experience don’t work, and just go back on the meds that do.

Expectation is the enemy. Time to regroup. He has come back to us before, and he will again, I tell myself. It’s just a matter of when and how. Continue reading Schizophrenia and Respect: Still Proud of my Son?

Families and Mental Illness: Listen, please.

I woke up early this morning, grateful to have slept at all. It’s finally Monday, and the main players on Ben’s so-called recovery team are back at work. Maybe – just maybe – I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers’ Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

one constructive thing...

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn’t stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben’s laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I’ve revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI’s Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger – and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I’m about to pick up the phone. Continue reading Families and Mental Illness: Listen, please.

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

Why the title “Ben Behind His Voices””? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction – 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others – that’s one of the symptoms of schizophrenia. But he does. He is full of love, and we’re grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period – for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

new excerpt: from Part One: Before the Illness

My Baby Boy

April 30, 1982

It’s hard for me not to see Ben’s life in two parts: before the illness – when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.

My baby. Benjamin was born on April 30th, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I ‘d done everything right during the pregnancy, I swear – unless you count the Pepto-Bismol during the first week of what I’d thought was a stomach virus but turned out to be morning sickness. I’d even gotten my husband, William, to change the cat litter.

Although – maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. …….

….(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect, and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him.

Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping – but never schizophrenia.
———————

SIDEBAR:
Is schizophrenia inherited?


Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person’s development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.

_____________

To learn more about this manuscript, contact randye@randyekaye.com