A Son’s Schizophrenia – Violence & Incarceration – A Parents’ Endless Efforts To Help Gabriel

(7-15-19) Not wanting to stigmatize individuals with mental illnesses, the majority of whom are not dangerous, few families openly discuss violence in their homes. Families, especially parents, are the most vulnerable when a seriously mentally ill loved one becomes dangerous. Here is the first of a two-part guest blog written by Elena Broslovsky who chronicles her son’s ongoing struggles with schizophrenia that lead to violence, his imprisonment and, ultimately a return to sanity.

Of Dragons, Magic Pills, And A Nine Word Incantation (Part 1 of 2)

Guest blog by Elena Broslovsky, author, blogger, advocate and mother.

On Mother’s day, I realized it might have been me lying cold and bleeding on the floor with my spleen kicked in.

I could have been airlifted to the emergency room, one eye battered closed, barely conscious.  It was Dove, who took the beating.  In shock, I fervently prayed he would live, while wishing I could die along with this nightmare.

Our son had slipped through time again into the grasping dragons of mental illness and addiction.  The memory of my nose buried in gold silk wisps at the soft spot of his newborn crown, always returns.  In my dreams and in broad daylight, the long ago intoxicating powdery sweet smell and recollection of that perfect peace, haunts.  The ability to stop his cries and fill his needs with gentle rocking and Mother’s milk are long gone.

As he grew, so did our pride in his accomplishments and hopes for his future.

He graduated with both academic and athletic honors at 16 and was accepted at UC Santa Cruz.  After his second semester, we began losing him in bewildering painful increments.  We fought demons with conflicting theories and advice.  Our love and good intentions were ineffective weapons.  He would partially recover with just enough of himself intact to give hope he might be restored and redeemed.

Each recovery left fewer fragments of our once brilliant, happy child.

There were magic pills to ‘fix’ him but he did not believe he needed fixing.

After a dozen years in-and-out of hospitals and on-and-off meds, he chose to live on the street even though he had a comfortable home.  He was almost thirty when he slashed the throat of an attacker in broad day light on Pacific Avenue.  It was deemed self defense.  All he had to do to stay out of prison was take the pills that made him stable.

But they also made his hands tremble and caused weight gain on his once taut athletic frame.  He refused meds and was locked up for almost six years till he was finally convinced the meds and freedom might be a better alternative.  He was influenced, he told us, by a lengthy stay in the SHU, aka Special Housing Unit, aka Solitary Confinement.  He was told he would not get out till he took his meds.

Released, he fought his way back slowly with the help of Twelve Step programs, a sponsor, and his practice of Zen Buddhism.  Dove, a soft spoken, pale, brown robed priest mentored him.  He was a teacher at a Zen Community when he first met our Gabriel, then a 16 year old, before his Twin Dragons struck.  We were so grateful that such a kind, intelligent, generous and peaceful man befriended our son. He taught him as a young University student and later when he was released from prison.

Dove helped Gabriel secure a small cottage on the grounds of the Zen Community.

For the next five years Gabriel battled his mental illness, gambling and substance addictions.

He was so drastically different from the child we once knew that he seemed to be our Second Son.  As he struggled to rebuild a remnant of a stable life, we walked on eggshells in his presence.  He had a volatile temper and lashed out at us.  He often seemed irrational and sometimes withdrew completely.  It was a difficult dance to be supportive but not tolerate abusive behavior.  We were guided by our local NAMI chapter, on-line support groups, classes, and oceans of books from other bewildered family members and mental health professionals. There was lots of support but also conflicting information and suggestions.

Most friends and family subtly and often blatantly blamed us, sometimes while bragging of their own child’s accomplishments.

Gabriel was often hostile and mistrustful, blaming us for his difficulties and insisting there was nothing wrong with him. We were the problem.  He would not sign a release form so we could communicate with those providing health care.   I sent past health records and a written history of the changes we noted  but could never confirm they were received.

We were shut out of assisting a treatment team.

We jumped at the sporadic chances to connect when he was open and loving and willing to include us in his life.  We had intermittent glimpses of the charming, sweet person he could be.  We lived on a Ranch in the Central Valley that I loved but I decided to move to Santa Cruz to be closer to him.

Eventually he took his Precepts in a Zen Buddhist ceremony and ironically was given the Zen name Mysterious Dragon of Constant Virtue.  His head was shaved.  He studied Compassion, Harmony and Buddha nature.  He served at ceremonies and meditations lighting incense and ringing bells.  He helped make meals for the homeless.  He had a part time delivery job.

When he completed his parole, he was no longer required to go to 12 step meetings.

The Twin Dragons that slumbered in his brain had been held at bay.  Now they stirred, awoke, and breathed their fetid fire.  He withdrew from activities, commitments, and community.   He stopped his meds and quit his job.  He stopped feeding the fish he had loved and nurtured and let them slowly die in the tank his best friend had given him.

 One bright February day, he tossed his phone and computer in a dumpster, and vanished.

After an exhaustive three weeks search I found him in a deteriorated state.  Although he recognized me, he wasn’t speaking.  He was dazed.  His cottage was still open and available but he would not consider returning to it.  I left money in an account for him at his favorite market.  The compassionate store clerk’s brother also battled schizophrenia.  She emailed updates and a warning.  The owner, her boss did not want him around the store.

Dove was deeply concerned and we both sought help from the police pleading for 5150 (involuntary psychiatric hold), to get him off the street and into care.

Gabriel had learned the magic words.  His hair was matted knots, his eyes were wild and his clothes filthy, wreaking rags.  A former clean cut, athletic, honor student was living on wild mushrooms in the wooded area surrounding the park where he sometimes slept.  Even though the police knew he had a schizoaffective diagnosis, and a prison record for a violent act…

“He is not,” I was coldly informed, “breaking the law.”

When approached he had incanted the nine magic words:

“I am not a danger to myself or others.”

He then melted back, out of reach, into the woods.

Days later, gaunt and wildly hallucinating, he slammed a complete stranger in the back of the head in a coffee shop.  Next he broke into Dove’s home through the bathroom window.  A fight ensued, leaving Dove battered so badly he was airlifted to Stanford and eventually lost his spleen and needed facial reconstruction.

They arrested our son sitting naked on a picnic table at the same market where Dove and I had pleaded with him to come home.  He told the police that Dove had been ‘replaced’ by a Nazi and he was trying to save him and others.  A much younger man, with a Dragon Tattoo had inhabited Dove’s body and replaced him.

He ranged from raving and incoherent to entirely mute.

Unable to assist in his own defense, he was sent to a state hospital to become ‘trial ready,’  by the court.  He came back stabilized on the meds he was forced to take there.  Now with the fog cleared he stated he knew it was Dove at the time.  Which according to those who evaluated him, meant he was sane at the time of the offense.   Not factoring his altered mental state on-and-off meds.

Gabriel stayed in the county jail for three-and-a-half years ranging from psychotic, to catatonic to barely stable.

In spite of a 27-year history with a diagnosed serious mental illness, and the knowledge that he had been off his much needed medication over 3 months, when he attacked the man who had mentored him since he was sixteen and shown him only deep concern and kindness, it was concluded that he was sane of the attack.   With a strike for a previous conviction he faced a 33 year sentence.  Once he was properly medicated he realized what he had done and became confused and racked with guilt.  He wanted to be punished.  I believe he would have rather been a felon in prison than a “loony in the loony bin.”

No one wants to create stigma against someone they love.  It is painful to accept that untreated and off meds our son can be a danger to himself and others, even though he can say the nine magic words.

“I am not a danger to myself or others.”

ABOUT THE AUTHOR: Elena and her husband Attorney Allen Broslovsky live in Aptos CA where they advocate for families dealing with SMI Serious Mental Illness.  They are members of the local NAMI chapter https://www.namiscc.org/ where Elena is part of the Helpline team and a Family Support Group facilitator.   They are also members of the amazing NAMI Family Support Group that meets at NAPA State Hospital and is supported by the NSH Staff. You can read more of her blog posts here.

(Tomorrow: PART TWO – Prison, stability and undying love.)

 

 

Elyn Saks Podcast Interview With Virgil Stucker: 3 Keys To Her Successful Management of Debilitating Schizophrenia

(7-12-19) Elyn Saks is probably best-known as the author of The Center Cannot Hold, her eloquent best-selling autobiography that recounts when she first heard voices speaking to her as a young teenager, her attempted suicides in college, and ultimately how she learned to live on her own as an adult with schizophrenia in an often terrifying world.

Virgil Stucker is best-known as the former founding executive director of the CooperRiis Healing Community, retiring after a long career working in therapeutic communities. He now runs Virgil Stucker Associates, a private firm that “empowers mental health decision making for families and individuals… advocating for integrative, holistic solutions to the challenges of mental illnesses.”

This week, Virgil interviewed Elyn on his podcast about what has helped her manage her serious mental illness so successfully. (Hint: Great treatment that involves medication and therapy, supportive loved ones, and meaningful work.) They also discuss “Supported Decision-Making” through the use of psychiatric advance directives, and her tireless efforts to eliminate the use of mechanic restraints for persons in crisis.

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Assistant Secretary Urges States To Re-Examine Civil Commitment Criteria, Pushes For Greater Use Of Advance Directives

 

(7-8-19) With only sixteen months to go before the presidential election and a possible change in leadership, Assistant Secretary for Mental Health and Substance Abuse Dr. Elinore McCance-Katz  continues to push for substantive changes at the Substance Abuse and Mental Health Services Administration. (SAMHSA).

The latest – urging states to study their civil commitment laws and promoting greater use of psychiatric advance directives (PADS). 

In a public meeting last week, Dr. McCance-Katz distributed  Civil Commitment and the Mental Health Care Continuum: Historical Trends and Principles for Law and Practice – a comprehensive SAMHSA study of civil commitment in America. The paper was distributed to members of the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC), which was created to advise Congress on ways to improve federal mental health/substance abuse services. I am the parent ISMICC representative.

The federal government doesn’t have authority to change civil commitment laws. That’s up to each state legislature. But in the last decade, nearly every state has sought a way to broaden criteria beyond dangerous to self or others.

And for good reason.

Relying strictly on dangerousness is foolish.

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Long-Time Advocate Reports From NAMI Convention – “Our Movement, Our Moment.”

(7-1-19) Long-time NAMI advocate Bob Carolla returned from the organization’s 2019 convention with this report. Full disclosure: I am a life time member of NAMI and support it monthly.

NAMI’s Convention:  Our Movement, Our Time: A report by Bob Carolla

The National Alliance on Mental Illness (NAMI) celebrated the 40th anniversary of its founding at its national convention in Seattle, June 19-22.

Twenty years ago, I remember vividly that there was a sense that the mental health community was on the verge of a new horizon—a next level.  The landmark U.S. Surgeon General’s Report on Mental Health had just been published; it framed mental health and mental illness as parts of a single continuum, identified “parity” between physical and mental health insurance benefits as a critical need, and made stigma a public health issue. The Academy Award-winning movie A Beautiful Mind was in the works.

Change comes incrementally.

It’s often hard to see at any one moment in time. But in the past 20 years there has been more progress than many of us realize. There have been advances in medical research, greater public awareness and openness about mental health conditions, enactment of a national parity law, state expansions of Medicaid and a growing focus on early intervention and prevention.

There is still much work to be done, but I believe we are again on the verge of a new horizon—a next level with more progress.

Like the rest of the country, NAMI and others in the mental health organizations are experiencing generational changes. New technology, new leaders, new structures and new alliances are starting to emerge. We may not be able to see it yet, but I feel it, as surely as I felt the beginning of recovery and renewal after being diagnosed with bipolar depression 25 years ago.

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An Australian Mental Health Worker Whose US Relative Couldn’t Get Help Asks Why Our System Is So Broken

(6-26-19) I’m often asked about mental health treatment in other countries so I was delighted when I met Rebecca Shepski after I delivered a recent speech. She told me about services in Australia and how those compare to what happens here. The differences became brutally and tragically apparent to her when a relative experienced a psychotic break and his family couldn’t get him help. In this blog post, she describes what worked so well in Australia, discusses her own family’s experiences here in America, and asks why we are failing so many.  Her’s is an important contribution.

“I was dumbfounded to learn the American system was so complicated and ostracizing for families.”

By Rebecca Shepski

The first and only time a patient of mine took their own life I thought I might never recover.

I was a case-manager in our state-wide forensic mental health system in Victoria, Australia. FPs, as forensic patients were called, had committed serious offenses, generally murder or attempted murder. During the course of their court proceedings it was determined that their mental illness had played a causal role in the crimes committed. For most, they had acted deliberately on command hallucinations. Most were terrified and thought that by killing that particular person they were actually preventing a more heinous crime from occurring.

One case involved a young man who believed he was protecting the children of the world from a man he thought was not only an alien, but also a pedophile.  The voices in his head guided him through the various steps of murdering him so that the children could be safe. This pedophile turned out to be his father. Once he became well, there wasn’t a consequence or sentence in the world worse than his own self-deprecating thoughts. He was placed on suicide watch and as I escorted him on a walk one day, he asked me this striking question: “Have you ever had a nightmare where you did something so horrible that you wanted to die?”  I hadn’t.  “It’s like I’m in a nightmare… I killed my Dad… and I can’t wake up.”

I took the time to read through every file on my unit. 15 stories of similar atrocities equally full of horror and sadness. The thing that struck me most, however, was that every single patient had sought help from a mental health provider prior to committing their offense.

Every single one had been failed.

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“How to convince someone with schizophrenia to get treatment?” Sister Asks. Also, Suing Insurance Companies After They Refuse Treatment

relates to As Suicides Rise, Insurers Find Ways to Deny Mental Health Coverage
>DeeDee Tillitt and her son Max, who died of a drug overdose 10 weeks after leaving a treatment center when his insurer declined to cover a longer stay. (Courtesy of Deedee Tillitt.) From Bloomberg Businessweek.

(6-21-19) A sister describes her brother’s schizophrenia and family’s struggle, and insurance companies are getting sued for refusing mental health care to patients who then take their own lives. While I don’t typically reprint stories, these two are worth your time.

One is a reminder of how important it is to share our stories. Putting a human face on mental illnesses lessens stigma, promotes understanding. Also, please tell me on my facebook page if you have been victimized by an insurance company. I will pass your story along to former Rep. Patrick Kennedy and the appropriate members of Congress.

As Suicides Rise, Insurers Find Ways to Deny Mental Health Coverage

Red tape and a lack of in-network providers frustrate those seeking treatment.

By Cynthia Koons  and John Tozzi writing in Bloomberg Business Week.

The U.S. is in the midst of a mental health crisis. In 2017, 47,000 Americans died by suicide and 70,000 from drug overdoses. And 17.3 million adults suffered at least one major depressive episode. The Mental Health Parity and Addiction Equity Act, a landmark law passed more than a decade ago, requires insurers to provide comparable coverage for mental health and medical treatments.

Even so, insurers are denying claims, limiting coverage, and finding other ways to avoid complying with the law.

Americans are taking to the courts to address what they see as an intrinsic unfairness. DeeDee Tillitt joined one lawsuit in 2016, months after she lost her son Max. He’d been an inpatient for three weeks at a treatment center to recover from a heroin addiction and seemed to be making progress. His addiction specialist wanted him to stay. United Behavioral Health, a unit of UnitedHealth Group, the nation’s largest insurer, declined to cover a longer stay for Max. Reluctantly, his family brought him home. Ten weeks later, Max was dead of an overdose. He was 21.

My Brother Tom’s Schizophrenia

writing in The New Yorker.

My brother Tom’s slide into homelessness occurred in stages.

We never knew exactly when or how he lost his apartment, or came to crash on friends’ couches, or began having run-ins with the cops. Nor did we mark the beginning of his habit of walking incessantly, roaming the streets and bike paths of Anchorage, Alaska, our home town, as he would for the rest of his life.

Friends and family members told me, much later, that he had been spending whole days driving around the city, marking up a map with notes and arrows, pursuing a delusion about women whom he believed had been kidnapped. Once, wandering and mumbling, he was picked up by police and later told a doctor that he had been fleeing the sensation that he was “about to hear the sound of a woman scream.” Another time, when our father wasn’t home, he apparently jimmied the lock with a credit card and grabbed an old checkbook for a closed account. Then he used it to book a room at a quaint little inn downtown and to make various other purchases: collectors’ coins, geodes, a framed painting, a Persian rug, and heart-shaped pendants for some secret or imagined love.

If you Google “How to convince someone with schizophrenia to get treatment,” you discover a vast network of distraught families grappling for answers.

When met with resistance by a person in the grip of psychosis, experts advise, try to work around rigid beliefs rather than attempting to dismantle them. Don’t argue with delusions, and don’t focus on points of contention. Listen respectfully and empathize. On the message boards at Schizophrenia.com, people weigh the merits and dangers of coercion, even its harshest forms. A man with schizophrenia expresses gratitude that his parents never kicked him out when he refused treatment, saying that he would not have got better without their unwavering support. Another states that, if he hadn’t been kicked out, he would never have sought help. Although research suggests that the gentler, subtler forms of pressure may be more effective, it seems that nothing works for everybody and everything works for somebody.

Continue reading here.

Marin Sardy’s  memoir, “The Edge of Every Day: Sketches of Schizophrenia,” is available on Amazon.