Tag Archives: schizophrenia symptoms

Update: Two More Years into Schizophrenia Journey

snow...like the symptoms that can coat Ben's thoughts
snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben’s company.  Here is what happened:

  • Ben helped me shovel the driveway – I mean really helped, as in he did 75% of the work.
  • Ben cooked us a delicious homemade pizza for dinner.
  • We watched an animated movie – well, parts of it – during the required “watchful time” after he takes his meds.
Any parent of someone with schizophrenia will tell you that this is a day to be grateful for – and I am, believe me. No, life isn’t perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.
I’m also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into “independent living” for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our “journey from chaos to hope” remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).
Truly honored and grateful…all of a sudden, three new 5-star reviews for Ben Behind his Voices: 
1 -“I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye”
2 -“As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book.”
3- “I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos”also came across this one, though it was in the form of a comment on another blog, and I can’t find the author’s page…(ah, Google Alerts)…

“Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion.”

You have truly made my day, readers. THANKS!

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Radio Interview: “We All Got Issues” Show

What’s going on now? Why doesn’t Ben “accept” his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the “We All Got Issues” show – schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”.

Here is the show – starting with the song “The Climb” setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer.

 

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Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Dear Reader:

BBHV audiobookcover
earlier drafts…

The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published.  Once in a while, I plan to post some of the “lost” passages that wound up on the writer’s version of the cutting room floor.

This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home  for treatment.  At this point in the story, we still didn’t know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.

 

 

Here is what happened:

“We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.

He had his backpack with him, always.  Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.

He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.”  Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”

The first few times, we played along.  He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.

The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse.  Ben, however, often seemed distracted.  We caught him “watching” the show with his eyes completely closed.  He looked as if he were trying to go into a trance. Continue reading Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

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Schizophrenia and Social Security Benefits

paperwork
Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork….and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org

 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.

Basic eligibility for either program requires:

  • you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

  • your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia Continue reading Schizophrenia and Social Security Benefits

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January First Review: Yes, Childhood Schizophrenia is Real

January First: A Child's Descent into Madness and Her Father's Struggle to Save HerJanuary First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield

My rating: 5 of 5 stars

It’s such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia – only my child was in his mid-teens when symptoms began. Jani was only – well, in hindsight for this loving, confused family, she was a newborn when her “differences” became apparent.

But, like our family, the Schofields thought, and hoped, that love – and disciplined, creative parenting – might just “fix” the problem. Not the case if your child has schizophrenia, trust me – and not easy to accept for either parent.

This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can’t do it alone. Then, we have to find the right people to fill out the team. This, as you’ll read, is a long journey.

Many had thought “childhood-onset schizophrenia” was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.

Bravo!
Randye Kaye, author “Ben Behind His Voices”

View all my reviews

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More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I’ve read that it’s a human to forget extreme physical pain – otherwise why choose another bout with labor and childbirth? – but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We’ve had, now, almost five months of stability with Ben, ever since the family stepped in to “help” his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it’s almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, “so, what do you do?” He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn’t have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

“Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor… You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I’ll have the fortune of having students like yourself in my classes in the future.”

Wow – yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. Continue reading More than just Meds: Recovery Reminders

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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!”

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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.

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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

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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?

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