Tag Archives: schizophrenia

One Reader Speaks: Siblings, Schizophrenia, Support, Strength

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Thanks for Reading and Sharing
Thanks for Reading and Sharing

Sometimes I open an e-mail from a reader that not only touches me, but teaches me…and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful – and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.

Dear Randye,
I am writing to thank you for your strong and beautiful book Ben Behind His Voices.  I did not want to read it.  I borrowed it from a friend almost two years ago and have been walking past it since then.  And I can’t exactly say it was light reading once I cracked it open.  Ben’s story is so much like my brother John’s.  But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective.  I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.
ovenbirdYou do an especially fine job of explaining that tension between trying to help and trying to let be.  Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision.  As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?”  One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.
Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas.  One is courage.  A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been.  He said yes, that he had been out too.  He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came.  “It was hard,” he said, “but I did it.”  It was hard?  To sit on a bench for 30 minutes on a beautiful spring day?  It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building.  But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.
Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.
We talk on the phone a couple times a week.   He lives about 90 minutes from me.  Yesterday we spoke for about 20 minutes.  With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply.  It was one of those moments you talk about that should be cherished for the simple pleasure that it is.  Your book did that for me.
I am saying a prayer for Ben.
I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy – RK

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NAMI Palm Beach Keynote – Support, Education, Acceptance

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Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL – a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

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The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

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It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben’s schizophrenia, but that he is willing to take consistently. Ten years.  Three of those have taken place after where our book, Ben Behind His Voices, leaves off – in what one reader calls “open-ended hope.”  At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to “cheek” his meds. He hated taking them, didn’t think he needed them, was discouraged by the side effects.

Rebuilding Your Life with Mental Illness: Delicate
Rebuilding Your Life with Mental Illness: Delicate

Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work – teamwork that included Ben himself, and that’s why it was effective.

What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that’s what matters. He felt like – and was/is – a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben’s adherence to his medication regime.

And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car. Continue reading The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care →

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Encouraging Treatment: Loving Parent? or Cruel Dictator?

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(repurposed from my final blogpost on “Mental Illness in the Family” on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself. Continue reading Encouraging Treatment: Loving Parent? or Cruel Dictator? →

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How Families Slip to the End of the Rope: Mental Health System Cracks

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As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?

Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category “How is Ben Doing Now?”), but here is the current picture, about which I am so grateful:

  • Ben continues to take college courses, 6 credits at a time.
  • He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)
  • He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it.  He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.
  • Although he had a roommate here for awhile, that ended badly (with the roommate’s addiction and connected behaviors) – but Ben has managed to salvage the start of an actual social life now. One step at a time.

 

Help Us before we Get Here!
Help Us before we Get Here!

Still. All of this progress can go away in record time – and often has, in the past – if something interferes with the meds he takes.

Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a “neural difference.” And we cannot do it alone.  So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.

1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.

2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.

3. Had to wait until Monday for further action. (No one works on weekends). Didn’t think it would be an issue. Continue reading How Families Slip to the End of the Rope: Mental Health System Cracks →

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Schizophrenia and Parenting: Step In or Let Go? (reposted from HealthyPlace)

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I no longer blog regularly for HealthyPlace.com, but still respond to comments from the years I wrote for them. In checking in, I noticed that the post with the most hits, and still bringing in comments, is this one. I wrote it almost exactly three years ago, but it still hold true. The situation may change (currently, our choices have upgraded to things like “should be support Ben’s getting his own car?”, but the dilemma – step in, or let go? – is the same. Every parent – whether or not dealing with mental illness – knows.

Here is the post, originally written May 31, 2011. (by the way, since this post, the apartment did NOT work out. See updates for details…Ben now lives with us.)

See if it resonates for you.

——————————–

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?

For the parents of a child without a physical or mental illness, this process is difficult enough; for those who are dealing with illness in our children, it’s that much harder. The consequences of stepping aside, of letting go, could be disastrous: poverty, hospitalization, an arrest, flight, or even – tragically – suicide.

Schizophrenia and Freedom Can Be A Scary Combination

 

Back when a hug was all it took...
Back when a hug was all it took…

 

My own son, Ben, 29, has just moved from seven years in a group home (24 hour staffing) to his own apartment. There is some support – a caseworker, medication supervision – but also a new lack of structure. No required group meetings. No chores scheduled. No one – except the roaches – to know if he washed the dishes or not.

Am I excited for him? Of course. Am I concerned? You bet I am. Is there much I can do? Only some things. He could crash, he could cheek his meds, he could oversleep and miss an appointment, he could become lonely and isolated. But if I call to see how he is, he sees right through me. “Mom, I’m fine. I’ll get to work on time. Of course I’ m taking my meds. I’m fine in the apartment all alone on my day off. Yes, I”ll unpack  soon.”

So I let him live. Alone. And I watch from the wings, ready to alert his caseworkers if I see any warning signs. Three days ago I saw the unmistakable (to me) signs that Ben had missed a day of meds – so I sounded the alarm to all new staff members who donot know his tricks yet. And now he’s okay again – so far.

Now I only see him on family occasions, or  on rainy days when he can’t take his bike to work. Could he wind up in the hospital again if I am not there to witness symptoms? Yes, of course. And I hate that. But we have only so much control.

My Adult Son with Schizophrenia: We Hope for the Best

As always, we do what we can and then hope for the best. Keep an eye out for trouble, and our hearts in a place of faith in Ben and his ability to make the adjustments to this new life.  Scary? Oh yes. We do the best we can for our loved ones -secretly or openly – and then sometimes all that’s left is to take care of ourselves and the rest of our family.

My mantra at these times? “Whatever happens, we will handle it somehow.”

I don’t always know how, but I know that we’ve managed before, and will again. And I ask for help when I need it.

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Mental Health Awareness Month, for Caregivers too

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Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year…but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!

WSFA.com: News Weather and Sports for Montgomery, AL.

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Schizophrenia and the Family: In a Nutshell?

Ben Behind His Voices Events and Updates, Family-to-Family, how is Ben doing now?, mental illness treatment and recovery, NAMI, , , , , , ,

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

The stage on rehearsal day
The stage on rehearsal day

I’ve just returned from Warsaw, where I was honored to have the chance to speak to a global audience

With Pete Earley
With Pete Earley

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.

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Update: Two More Years into Schizophrenia Journey

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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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“Making Money Off My Son’s Illness”? A response

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This post started out quite differently.

I write another blog called Mental Illness in the Family, which appears on HealthyPlace.com, and though I usually keep these blogs separate from each other, I often wonder why.

Today’s post on Healthy Place has to do with a topic I often – sadly – must revisit: relapse, or the return of symptoms. in it, I write:

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities. Continue reading “Making Money Off My Son’s Illness”? A response →

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