Category Archives: mental illness in the news

Treatment Pays Off in Schizophrenia, Even if “Unwanted”

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”

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What if Target’s Sweater Poked “Fun” at Cancer?

What if it said "Christmas cancer. My spending is growing uncontrollably"?
What if it said “Christmas cancer. My spending is growing uncontrollably”?

Is really “just a shirt”?

This week, social media has been abuzz with two “holiday” issues so far: the Starbucks Cup ( and there’s not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. “Obsessive Christmas Disorder.”

Mental Health Advocates are up in arms about this “joke”, which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say “oh, get a life, it’s just a harmless joke.”

But what if the sweater read:

 I have Christmas

Cancer.

My spending just keeps growing out of control.

I ask you, what then? Would anyone be supporting Target’s “right to make a joke”? Continue reading What if Target’s Sweater Poked “Fun” at Cancer?

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Thank You, John Oliver. And I apologize.

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.

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Sons with Schizophrenia: A Tale of Three Mothers

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

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

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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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!

 

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The Aurora Shootings: One Year Later

One Year Ago...
One Year Ago…

Tomorrow is the anniversary of the shootings in Aurora, Colorado.

Untreated schizophrenia seems to have been part of the picture of this awful tragedy,  one of the worst mass shootings in American history.

James Holmes, a young man suffering from chronic schizophrenia plotted and proceeded to carry out an attack on innocent movie goers.

 

 

According to the Associated Press today,

Twelve people died, 70 were injured, and more than 300 fled into the night and into the arms of loved ones.

A year later, the survivors cannot forget their terror, or the injuries they suffered, or their losses. But they search for meaning, and sometimes find it: the victims whose faith has strengthened; the father who lost his son but found a cause; the couple who believe that the anniversary of a hateful act can be transformed by love.

The Huffington Post updated the story yesterday, recalling these details about shooter James Holmes’ background before the event:

Citing a judge’s gag order and privacy laws, those who know the most about Holmes’ life in Colorado say little. But there were hints along the way that his life had taken a sharp and dangerous turn.

In March 2012, four months before the shootings, he told a classmate “about wanting to kill people … and that he would do so when his life was over,” prosecutors said in a filing.

Prosecutors also said he opened accounts at two dating websites in 2012 and wrote in his profile, “Will you visit me in prison?”

In June, about five weeks before the shootings, a psychiatrist who had been treating Holmes told a campus police officer that Holmes had made “homicidal statements” and threatened her.

 

ht_Kirstin_Eugene_aurora_shooting_kb_130719_16x9_992
Planning to Wed on Aurora Anniversary

Shooting survivors Eugene Han and Kirstin Davis say they have forgiven James E. Holmes, whose defense lawyers acknowledge was the gunman. They intend to “reclaim the date” by getting married tomorrow, the anniversary of the shootings they survived.

Meanwhile, the details remain cloudy. What are the details of James Holmes’ illness, childhood, and were there warning signs that should have been heeded? What if he had been receiving treatment?

Most vitally: Could this have been prevented?

Gun control remains an issue, of course, but so does mental health treatment.

We must not sweep these issues under the table. One year is not enough – no time is ever enough – to recover emotionally from the the results of non-treatment that did not have to happen.

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Call Me Crazy: You Are Not Alone in this Fight

Cast of Call Me Crazy

Lifetime is premiering a new film this Saturday at 8 PM:  

 

Call Me Crazy and I can’t wait to see it. I hope you will watch it too.

 

Here is the description from Lifetime:

Through the five shorts named after each title character — Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. “Call Me Crazy: A Five Film” stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology

NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in  This Fight.

As I myself prepare to visit Ohio, New York, Louisiana, Michigan, Connecticut and Tennessee in the next few weeks to share our story for Mental Health Awareness Month, I am thrilled that the messages will reach way beyond personal travels and speeches to reach the wide viewing public.

 

Here is the story I shared on the NAMI site:

My son has experienced what I later learned is a fairly typical gradual-onset  pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again – but that hope is always guarded, affected by stigma, caution and some sense of loss.

One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience – and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.

Bravo to Lifetime – I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.

Randye Kaye

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Mental Illness Treatment Laws: Does Connecticut Lag Behind?

Sandy Hook
The nation weeps

Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza’s history, we struggle to understand how it might have been prevented – or, at least, how to help prevent it from happening again.

 

First, some facts: Court-ordered hospitalization for mental illness is authorized in every state, but each state’s criteria for involuntary treatment is different. Connecticut’s report card? Not so great.

“Connecticut’s civil commitment laws are among the most restrictive in the nation when it comes to getting help for a loved one in psychiatric crisis,” said Kristina Ragosta, senior legislative and policy counsel for the Treatment Advocacy Center, who serves as the organization’s expert on Connecticut. Ragosta said the law is restrictive in three ways that differentiate it from states with stronger laws.

1. An individual needs to be dangerous before intervention is possible. The standard requires that the individual be a danger to self or others or a danger due to grave disability before commitment is possible.

2. The law provides no option for qualifying individuals to receive court-ordered treatment in the community. This makes Connecticut one of only six states that does not provide the option of assisted outpatient treatment (AOT) as a condition of living in the community.

3. The state’s standard does not take into consideration an individual’s past psychiatric history, such as repeated hospitalizations, and/or symptoms of psychiatric deterioration that could culminate in violence or other consequences of non-treatment.”

Here is my letter to the state’s bipartisan task force

Dear Committee:

I am the mother of a beautiful son who suffers from schizophrenia. “Ben” is now 30 years old, and with treatment is both a student (Dean’s List) and taxpayer (employed in season at a Connecticut tourist attraction, where he interacts beautifully and appropriately with the public).

Without treatment, or when services are cut, he is a patient instead- wandering aimlessly through the halls of a psychiatric hospital until he agrees to go back on his meds. This has happened three times since Ben began his recovery phase – and each time we face the fact that he may never return to us, as there is no mandated treatment, no assisted outpatient treatment, and we his family are left holding the bag and guessing how to help him. Continue reading Mental Illness Treatment Laws: Does Connecticut Lag Behind?

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The Tragic Newtown Shooting: Attention Must Be Paid

The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services,  stalled research, and lack of support?

Newtown Grief
Never Forget. Act to Prevent.

Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.

It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.

Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.

As we struggle to “search for solutions” (this week’s topic on Good Morning America), I hope we also get to find out what Adam Lanza’s mother, Nancy, had struggled with.

  • Did she try to get help for her son, only to be denied because he was “legally an adult, and there’s nothing we can do now”?
  • Was she left with no choice but to home-school her son after he dropped out of high school?
  • Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)
  • Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?
  • Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?

All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben’s nature is sweet and peace-loving. Even his “grand delusions” when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.

But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to “fix it themselves.” Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, “Ben Behind His Voices”, and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.

I don’t “know for sure” (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can’t help but wonder – no, suspect – that the answer is yes. This did not have to happen.

We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.

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