Category Archives: mental illness treatment and recovery

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(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?

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

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

Mental Health Awareness Month, for Caregivers too

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.

Schizophrenia and the Family: In a Nutshell?

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.

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

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

“Socialization Over Isolation”: Jani, Ben and Community

I am a firm believer in the possibility of Recovery in Mental Illness.

Does “recovery” mean “cure”? How I wish it did – but, at the present time, it means management of symptoms, and it means rebuilding  – of one’s life, and also of neural pathways.

I have watched and guided my son Ben through a decade of recovery – the ups and downs, the crises and the careful restoration afterwards.  What this has taught us is that there are four cornerstones to the foundation of the recovery process:

  • Medical Treatment (whatever that means for each individual)Cornerstone Concept
  • Structure
  • Purpose, and
  • Community. Love.

Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben’s recovery process. One is that he now is employed, and has been for over two years. I’ve written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.

The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben’s life now includes friends – including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary.  For the first time in over a decade, I hear the sounds of  laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say “I’ll be right back. Just gotta take my meds with my Mom.” A miracle.

Wow. Socialization over Isolation. Yes, please.

socializationThe Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other – to provide community where they don’t have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of “Born Schizophrenic”. They have created this t-shirt which echoed my feelings about Ben’s recovery. Socialization, especially in places where you don’t have to always feel “different”, is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous.  This excerpt from Ben Behind His Voices tells the story:

 

“I once attended, in 2001, a meeting of Schizophrenics Anonymous.
This group is based on principles similar to the twelve steps of Alcoholics
Anonymous. After a lengthy conversation with Charlie, the founder of the
local chapter, I was granted permission by the group to sit in. The week I
went, there were about seven or eight people attending, in various stages of
recovery. They asked me to share my perspective as the mother of someone
with schizophrenia, and they spoke of their own paths toward recovery.
Afterward, we all went out for pizza—because, as Charlie told me
with a smile, “We need to practice socializing, you know.” They got
the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another
group member. I loved these people. They even joked about their past.
They shared a genuine laugh over things they had once believed about
themselves: that they had “known everything,” that they were meant to
be elected president. This was the first time I had ever heard these stories
told with any humor inside the tragedy. It felt like the ultimate acceptance,
being able to laugh with each other about it. They had found community,
and they had found laughter.”

The feeling of community can also happen in Clubhouses,  programs where members are given purpose, and not just a “place to go”. People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often – as are their families. I have spoken with Jani’s parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.

Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?

BynesAmanda Bynes is in the news – again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis.  I mention this to Ben, and he says, “Hmmm. Interesting.” This story will not, I suspect, make a dent in Ben’s insight into his own illness – not now, at least. Patience is key when you love someone with schizophrenia – along with many other qualities.

But we follow the story, to see what the media does with it.  I see Hollywood Gossip report she is on a “drug cocktail” and comment:

“I’m so glad to hear that Amanda is responding to medication (not “drugs”…these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see “anosognosia“) but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support. “
My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on marketplaceNPR that is business-oriented, and they have invited me to be part of a show  (coming up this week) on the topic of conservatorship, with Amanda in the news and all.
This same issue came to light in when Britney Spears‘ parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well.  At that time, I was booked to appear on Dr. Drew’s HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.
safety-net
I am Ben’s conservator, but it doesn’t mean I run his life, or control him. I am simply allowed to help him when he needs the help – and, yes, sometimes when he doesn’t know he needs that help. (when schizophrenia symptoms take hold.) It’s a safety net. And we need it.
Watch this blog for updates!

 

“Hearing Voices” Movement…Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben’s symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only “understood” their origin?

brain in hands
Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  “hearing voices” movement – or, in the US, something called Mad In America. I’m glad it has worked for some – but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist “voice hearers,” as some wish to be called. Unfortunately, most of these groups don’t want to recognize the very different needs of people with severe mental illnesses. Continue reading “Hearing Voices” Movement…Not For All

NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I’ve had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

  • learn about and accept my son’s illness
  • know that I was not alone, and
  • find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness “consumers”, others say “clients”, or “patients”, or “individuals”…and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

namiSummitbusLast week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed “From Chaos to Hope.” So close to the subtitle of Ben Behind his Voices…it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social citlogowork professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening’s Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it’s properly supported. Continue reading NAMI: How Strong Can an Affiliate Be?

“Silver Linings Playbook” and Meds: Why the Secrecy?

At the end of the movie Silver Linings Playbook, when main character Pat Peoples is about to embark on the next, happier, more stable part of his life, I think he says something to his ex-wife about doing much better because he is focused, determined, physically fit – and (shhh!)taking his meds.

silver liningsI think he says this because it’s muttered almost under his breath – like it’s a big secret we don’t need the audience to know. As if he could do it all by himself without those nasty “drugs”.

Really? Most of the one-out-of-four families who deal with mental illness will say that, while all those other elements of recovery are also essential (love, purpose, helping others, exercise, structure) , they could be entirely useless without the medications that stabilize the brain. Albeit not perfectly.

Does Pat Peoples Take Meds in Silver Linings Playbook ?

One quote from the book:

“…a woman who knows all my secrets, a woman who knows just how messed up my mind is, how many pills I’m on, and yet she allows me to hold her anyway”,

suggests that Pat did, after initial resistance (which we see in the film), take his medications (which we might see in the film, but it’s left unclear). Continue reading “Silver Linings Playbook” and Meds: Why the Secrecy?