Category Archives: mental illness treatment and recovery

He’s Out! But For How Long? Family Input Ignored.

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Mom and baby hands
It was so much easier then…

“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”

I have this recorded on my iPhone. 

Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.  I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure. 

It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.

 I was right. Unfortunately. Shit.

Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother’s heart that hurts for my son and all he’d lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked…for awhile.

Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized – but not on the medication that had brought him back to a place where he could work as a restaurant server….and fool people into not knowing he has this devastating brain illness: schizophrenia.

No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still…), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects. 

Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.

Continue reading He’s Out! But For How Long? Family Input Ignored. →

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

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Hope or Desperation?

One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again.  

Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had  worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering.  

How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family. 

But there’s only so much you can do if he backwashes into the water and then swears he didn’t. 

We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever. 

Continue reading Five Months a Patient (Psychiatric Unit): Daring to Hope Again →

Breakdown: The Right Title for a Much-Needed Book

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I’ve often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.

Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.

I had to sharpen my pencil several times, I underlined so many facts and observations.

Five Shocking Facts

Five things that either stuck with me or surprised me – and, after nine hospitalizations for my son Ben, I thought I knew it all…

  1. Often the “easier-to-manage” psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage.  Those admitted include “malingerers” who just want to get off the street for “three hots and a cot” and can fake psychosis.
  2. Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.
  3. Yes, untreated schizophrenia can increase the incidence of violence.  And often, when the voices tell a schizophrenia patient to harm someone, it’s someone they know…and usually love.
  4. Regarding RLC’s (Recovery Learning Communities, often staffed by “peer specialists who endorse the possibility that signs of psychosis are normal”):  ” Researchers found no significant benefits…to help the seriously mentally ill population”- of which my son is one. I live in fear of those who would try to “teach” him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)
  5. Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and “stigma” was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.

Continue reading Breakdown: The Right Title for a Much-Needed Book →

Partnering with Researchers for Brain Awareness Week 2018

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“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”

You can view the story here!

The Precarious Jenga Tower of Life with Mental Illness

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Jenga_distortedMy son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds –  and has held a job he loves for over two years.

What she hadn’t realized is this:

Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand. Continue reading The Precarious Jenga Tower of Life with Mental Illness →

Treatment Pays Off in Schizophrenia, Even if “Unwanted”

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One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says “I am afraid of my own son now.” According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said “no thanks.” And nearly killed his parents.

My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work.  He has been a server at the same restaurant – full-time – for over two years.

In Ireland, a man is finally committed to a mental health facility – after killing his parents with an axe. This treatment comes, obviously, way too late.

My son’s phone constantly rings with texts from friends, who are trying to arrange a “game night” at home for
tomorrow evening. Now he has friends again – but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.

Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to “go back on meds”, after which he moved back in with us – with strict rules to “follow psychiatrist instructions.” Why? There was no other way we’d allow him to live with us.

some of the latest info on schizophrenia treatment
some of the latest info on schizophrenia treatment

The truth is: treatment makes all the difference. That’s why we, Ben’s family, “require” it in order for him to live with us. And, yes, we supervise it – staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen – messy bedroom, sloppy compliance with curfews, uneducated financial decisions – even though Ben is 34 years old.  Not always fun, but we’ll take this level of challenge. It’s annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have “problems” like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day. Continue reading Treatment Pays Off in Schizophrenia, Even if “Unwanted” →

The “Interfering Family” and Mental Illness: Some Helicopters Save Lives

legislative issues in mental illness, mental illness and family, mental illness treatment and recovery

 

I never wanted to be a helicopter parent.  When my kids were younger, I often responded to their problems with a “mean teacher”, “unfair boss” or “fickle friend” with a well-rehearsed “wow, that must be tough. How are you going HelicopParentsto handle it?”  This was not easy, mid you; parents want to fix things. But I did my best, and the “hands off” approach usually yielded the best results in terms of self-sufficiency.

But when your child has a mental illness, all bets are off – especially in times of crisis.  Although most of the laws in this country deny our family the right to “interfere” in my son’s life, we do it anyway. At least, whenever we can – if we feel we must.

Ben is 33 years old, and was diagnosed with severe paranoid schizophrenia at age 19, after years of chaos and uncertainty. We tried letting him “experience his own consequences” for years before that, with results that were ineffective at best, disastrous at worst.

If you live in our town, you might know Ben now as the best server in a local restaurant, where he has worked for nearly two years.  He’s also the one presenting his latest poetry in community college Creative Writing class.  You might see him at Starbucks, just hanging out with his morning coffee, or doing karaoke or bowling with friends.  But, not that long ago, he’d have been the one wandering the streets, or the halls of the psychiatric unit at our local hospital – unreachable, glassy-eyed, talking to his voices.

How did he get from hospitalized to hired?  I give Ben a good deal of the credit. Continue reading The “Interfering Family” and Mental Illness: Some Helicopters Save Lives →

Thank You, John Oliver. And I apologize.

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Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds – with plenty of room for punchlines as well. I know – seems like something that isn’t humorous. But this segment provides more respect for mental health issues than so many others I’ve seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

“It seems there is nothing like a mass shooting to suddenly spark political interest in mental health.”

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on “judging” this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way) Continue reading Thank You, John Oliver. And I apologize. →

Sons with Schizophrenia: A Tale of Three Mothers

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Love matters...but it's not enough
Love matters…but it’s not enough

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy. Continue reading Sons with Schizophrenia: A Tale of Three Mothers →

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 →