After Mental Health Treatment - What? Fellowship Place Gets it Right

Ten years ago, I toured a community with the following mission:

To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.

This community is called Fellowship Place, and it represents what can happen when people come together to look past medical treatment alone - and add housing, purpose, structure, and community to the picture.

At the time, I wished Ben might be interested in living in such a caring, well-thought-out community. He wasn't. But now, ten years later, he is open to the idea.

The only problem is: it could take a decade before a place opens up. I wish I'd put him on the waiting list ten years ago. It might take that much time.

We need more places like this.

Hear why: 

Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate

One day into June, and the official #MentalHealthAwarenessMonth is over - but the fight is far from over.

Please welcome guest blogger, C.J. Hanson, with these thoughts regarding her brother who has serious brain disease.  CJ is one of the authors in Dede Ranahan's award-winning book,

Tomorrow Was Yesterday.

"I have strong opinions regarding the many different causes for the continual denial of help and easier access to real treatment for my brother since the beginning of his trauma and brain illness of Schizophrenia and Anosognosia.

We initially thought the care he needed was going to be available to him given how severe his multiple disabilities including having lost his eyes in an accident and then brain illness.

We each have our own obstacles. But, like most families - access to that elusive help - was slammed shut on us because Mark is an adult who happens to have anosognosia related to the brain illness.

Waiting for him to figure out what is best for him.. what is safe for him... that he even has a serious mental/brain illness... will never happen.

CJ Hanson, Mental Health/Brain Illness Advocate

No one can understand the respective roles that we are each left to play amidst the absolute expectation from society that we should just innately have all the answers, when we have a loved one with SMI/SBD - an expectation that we are fully capable to physically house and care for someone so floridly psychotic after he has fallen 34 years into the abyss and the tiniest of cracks of his mental illness. Our shattered and fragmented Mental Health Policy & Laws which includes abandoning the most vulnerable of those among us and their families is cruel.

Many of us are just family members struggling to be what we are not. - Medical professionals, Neuro Psychiatric professionals, Medical intervention, Legal and Financial advisor, Psychiatric Technician, Social Worker, Protector, Nurse, even Guard - day and night. Every day and night.

From what I have seen some of the top advocates for Mental Healthcare Reform are those who have paid the ultimate price already... either the loss of their loved one to suicide, abuse, injustice or just completely and forever lost in their illness.

Some family members, advocates and activists are still smack in the middle of their struggle to avoid those outcomes.

But, we are all advocates and activists - for Serious Mental/Brain Illnesses and the change towards quality of life, comfort, justice and fairness in #MentalHealthcareReform. Which means including the family members."

~ CJ Hanson

PS - I hope that my friends, group members, and followers will visit the new Facebook page which will follow the development of the movie documentary and give us a "like," follow it... and if you are moved - to contribute to the production and success of the documentary. Please share the link to the page on your timelines and to your friends too for the success of this important project. We will be successful with your help!

https://www.facebook.com/noonecaresaboutcrazypeople

#LPSReform

#HIPAAReform

#NationalShatteringSilenceCoalition

#MayisMentalHealthAwarenessMonth

#NoOneCaresAboutCrazyPeople

Oprah, Harry, and Schizophrenia: The “Me” My Son Still Can’t See

The Me You Can’t See

Have you seen the new docuseries on AppleTV+, “The Me You Can’t See”

First of all, thank you, Oprah and Prince Harry, for joining the ranks of advocates who are becoming more open, honest, transparent about mental health issues, barriers, and some solutions. In this 5-part series, people from celebs (like Lady Gaga to the Prince himself)  to “regular folk” talk about trauma, challenges, heartbreak, and where they are now.

This is brave. This is eye-opening. This will help some folks, diagnosed with mental health issues (or those who know, treat, or love them) to understand and know they aren’t alone.

Thank you.

And yet. 

Does it go far enough? 

I am hoping for a second series, where more illnesses are explored, uncovered. Especially schizophrenia in those who have yet to be aware that they have the illness.

As we’ve covered often in our podcast, Schizophrenia: Three Moms in the Trenches, and in the books and blogs we share, one of the hardest things about schizophrenia is that the first step often can’t be taken: the step of awareness. Anosognosia is the condition that keeps Ben, and countless others like him, shielded from that awareness - and from accepting treatment unless somehow coerced into it (even by love).

Oprah and Harry - next time - and I do hope there will be a next time - please talk to the families of those affected by severe mental illness.

This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.

We cry, we fiercely guard, we coerce, we lose sleep, we go broke.

We live through grief, live sometimes in fear, we lose our own futures, and  we bounce back a zillion times - all in the name of love, and in the hope that more people - researchers, practitioners, lawmakers, first responders - will learn from our heartbreak and advocacy, and continue to prioritize (and fund) services and science  that will help our loved ones, and our families.

Ben (my son), as you may know from following this blog, recently was released from a nearly-six-month psychiatric hospital stay (almost unheard of in this country) and has slipped from a relatively normal life of work and semi-independence to one of a group home bed and starting from scratch. 

Still, he does not believe that going off his meds had anything to do with the breakdown he experienced in August. He refuses to go back on the meds that he was treated with when he managed to have a clearer semblance of a life. The light is no longer there in his eyes, but he doesn’t feel the difference. 

While he has said he “struggles with symptoms”, he won’t say what those symptoms are. He becomes paranoid and cagey if I ever bring it up. I’ve learned not to.

I’ve learned to appreciate whatever crumbs of my child I can get, and am grateful every day that he is in a place (for now) with a staff trained to help him - even if he refuses much of that help.

According to NAMI,  

When we talk about anosognosia in mental illness, we mean that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately. Anosognosia is a common symptom of certain mental illnesses, perhaps the most difficult to understand for those who have never experienced it.

This is what makes schizophrenia so difficult to treat - the “rights” of patients to refuse the treatment that would help them the most. 

If we applied these “rights” to our parents or other loved ones with dementia or Alzheimer's, they’d be living in an unsafe world. So we don’t allow that to happen.

Well, untreated, so is Ben. And so are the families of people diagnosed with SMI (serious mental illness). 

When you cover schizophrenia by interviewing someone who is in treatment, and aware of their own illness, you don’t tell the whole story.

This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.

Thanks, though (really, I mean this sincerely), for the brave steps you have taken so far.
Let’s keep going.

The Public Cry: #freebritney! Is There More to the Conservator Story?

We become conservators to rescue.

Listen, I want Britney Spears to be happy too. She's incredibly talented, seems nice, obviously loves her children, and has worked her ass off pretty much all of her life. And, yeah, her dad seems like a controlling asshole. Also, it has to suck to have your adolescence questioned and paraded all over the media. She was not treated with respect, to say the least. The paparazzi and press were shameless in their interference - and, well, sheer gall. Anyone might crack under that kind of pressure and scrutiny.

(Imagine if all Your teenage love starts and fits has been plastered over the tabloids. I mean, Seriously.)

But, after watching  Framing Britney Spears (and to channel Carrie Bradshaw), “I couldn’t help but wonder.....” even now, are we getting the whole picture of her conservatorship?

This is not a popular take right now. And I’m not saying that Brit shouldn’t be “set free”.  Honestly, it’s none of my business.But, since I am a conservator myself, I’m just saying there might be more to the story. Have we fully seen in that documentary what a conservator can do to help? To avoid disaster? To protect the conservatee? We have not.

Even Brit herself, speaking out after the documentary aired, has said “everybody has their story.”

Here’s mine.

I applied for conservatorship in 2003 when my son Ben was about to sign papers to “set himself free” from the psychiatric unit in the hospital. He was psychotic, confused, a danger to himself - but would have been released anyway because he had “rights.”

But by applying for conservatorship and right to treatment, I bought him some time - time to stabilize and to plan for discharge.

I became Ben’s conservator (of estate and person) and fought for his “right” to be treated for a serious brain illness - and kept fighting. Because of that, he finally was stabilized enough (5 hospital stays later) to be placed in housing where he could begin to rebuild his life.

And, I had the right to information each time he was hospitalized again. Without those papers, I’d not even have been able to know where he was.

In the 18 years since that decision (one I have to renew every year), I’ve stayed as far as I can from making decisions for Ben. Not all conservators decide what a person eats for breakfast (like Britney's father in the documentary). However, I have been able to step in and help when necessary.

Some examples:

• Ben thought he was “helping a co-worker” by co-signing a car lease agreement for her - without my knowledge. When she defaulted and he was hounded by debt collectors, I was able to get him out of the agreement.

• Ben decided to sell a perfectly good used car we had gotten for him (he paid us back, bit by bit, and had been free and clear) and lease a brand new one....to the tune of almost $800 a month.He went over the mileage and “solved “ that by leasing a more expensive one. We have to declare bankruptcy to get him out of that debt.

• He is a shopaholic. I know it makes him happy to feel normal...but did he really need a set of pool balls and cues when we don’t even have a pool table? I can’t really stop him, but I can keep enough money set aside (if he has any) to make sure bills are paid.

• He has now been hospitalized 9 times. That’s a small number compared to others I’ve seen. But my conservatorship gives me the right to know medical information, from the smallest detail (yes, he is a patient there) to the larger issues of what a discharge plan is.

• I can take charge of getting his disability payments back. This is absolutely essential right now, as he is back to square one and has no other income at all.

• While he was in the hospital, I was able to keep up his credit card payments ((of course, he was maxed out and only paying minimums)

“But (I hear you saying in your head) why don’t you let him just make mistakes when he hits bottom won’t he learn his lesson? The answer is… No. With schizophrenia, even treated schizophrenia, learning from your mistakes is often not part of the picture. I wish it were.

I do not decide what he eats for breakfast, who he hangs out with, where he goes. I am a safety net, and he has fallen many times. Mostly I let him make his own decisions, but within reason.

Like today:

“Mom, did I get a stimulus check? Where is it?”

“Yes, and I put it aside to pay your rent until your social security is approved.”

“Oh, ok.”

(Because I know, from experience, that if that check is at his disposal he will not rest until it has all been spent on clothing he does not need. trust me , I know. I cleaned his room while he was in the hospital. He could also use it to buy pot. Nope. Not on my watch).

Conservators are not all dictators or assholes. Most of the time, we don’t even want the job. But someone has to do it, and if we can prevent total disaster we step up to the plate. Most of us strike that balance of letting go and stepping in. or at least we try.

So - i feel for Britney, I really do. But that documentary was very one-sided. I would just need to hear the other side of the story. Wouldn’tyou?

Breakdown: The Right Title for a Much-Needed Book

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.

Lynn Nanos knows her stuff, truly cares about her cases, and fights for what's right - while fearless in exposing the cracks in the system.Highly recommended reading.

The Precarious Jenga Tower of Life with Mental Illness

My 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.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.

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 fortomorrow 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

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.

Oh, we are not without fear. We feel like our life is lived with fingers crossed - because two days without treatment would change everything. We've seen it happen before.

Ben is still rebuilding his life - and his treatment is a huge part of that journey. Without it, all he has built could topple like that first straw house in the story of The Three Pigs.Treatment works - and in our case it simply cannot be "voluntary." We won't allow it.

We know what we'd have to do if Ben were to suddenly refuse treatment - refuse to allow him to live with us - and it's terrifying.We've done it before, much earlier in this process, before we understood his diagnosis. Ben was homeless for five months when he was 19 - and the threat of having to live in a shelter again is what got him to agree to treatment a decade ago.

Since then, he has slowly reclaimed his life - with the four pillars of community, purpose, structure and (yes) treatment. If any one of these pillars should crumble...well, let's just hope that never happens. Because right now Ben has a life. As he recently said to me, "I finally like who I am right now. I have a life I'm proud of. And if meds have something to do with that, so be it."

…but not disaster, if we catch it in time!

Wahoo! Does he mean it? I can't be sure. He has said this before, right before he'd been placed in his own apartment five years ago and left to "manage his illness alone." The result was the eighth hospital stay, during which his "without meds" behaviors became uncharacteristically belligerent.

So we still will adhere to our process for treatment, simply because it is working. Ben deserves treatment - and he deserves to have it supervised and reinforced if that's what he needs. There are those who will argue that he has a right to "refuse treatment."  Well, I say he has a right to have a life. With treatment, that life is filled with family, friends, love, work, a social life, a chance to mature and make decisions for himself - and a baby niece whose face lights up when she sees her Uncle Ben.

Treatment is far from perfect, but it can work. Keep improving it, make it available, fund it, enforce it. So no family has to ever be afraid of someone they love. 

The "Interfering Family" and Mental Illness: Some Helicopters Save Lives

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 to 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. He got there in baby steps, and kept reaching higher.  But, to be totally accurate, our family gets credit too, for insisting upon treatment and “interfering” each day to supervise until, as in the guiding grip when your child is leaning to ride a bicycle, we feel we can fairly safely let go.  We strike balance – or try to – every day.  Do we “let” Ben purchase a used car? Handle his own finances? Do we wake him for school or let him experience the consequences of oversleeping? These decisions are small compared to the big one: do we insist he take his medication every night? If he refuses, do we enforce our rule that he can live with us no longer?

The answer, for us, is YES. That “house rule” is not negotiable. The “law” may say we can’t require Ben stay in treatment, but our “house rules” say we can.

Right now family rights in mental illness is in the news, as part of proposed law HR2646, The Helping Families in Mental Health Crisis Act.  In hearing the stories of families who have lost loved ones to mental illness, or who have been attacked by loved ones in crisis, I am reminded of how lucky we are to have Ben in our lives, and stable – for today. Each day feels like borrowed time, but we gratefully embrace each one.

It wasn’t always like this, though, and may not be again…if his treatment stops. In the past, our “interference” has thwarted disaster many times. Here are some times I’d prefer to forget, but cannot:

1999: Ben drops out of high school, after a few years of increasingly odd and isolated behavior. We are “not allowed” to interfere. We suspect mental illness, perhaps depression. We are “not allowed” to insist on medication, as Ben is over 16 years of age. We do pay for years of therapy. We are allowed to do that.

2000: After ten months of success in an independent living program out west, Ben asserts his independence by smoking marijuana and decides to take control of his life. We practice ToughLove and letting him experience his own consequences. Though he does call once a week, and asks us to pay for a therapist (which we do), Ben becomes homeless and sleeps under trees in the cold Idaho winter months.  We do not “interfere.” He is that homeless guy wandering around talking to himself. Later that year, we do interfere, and Ben comes home with the agreement that he will see a psychiatrist and follow treatment.

2000-2003. Ben’s cooperation is spotty, and hard to enforce.  Seven jobs, few of which last longer than a week or so. Therapists insist we are “too involved” and should back off, let Ben live in his own apartment. Of course, we are allowed to pay for it.   Our “interference” helps him find a place to live. We drive him around to find an apartment that will accept a 19-year-old kid with messy appearance, no credit rating or job, and allow a month-to-month rental agreement. We help him move in. We drive him to school.  We watch him fall deeper into psychosis, helpless to insist on treatment. We wait for him to get sick enough to be helped.

If Families Have Support, They Can Provide Support

2003. The year of five hospitalizations for 21-year-old Ben.

• First time, he was “staring” at a child in a diner. Without us, he might have been arrested. With us, he was finally admitted to the hospital. Eight days later, he was about to sign himself out – which he was allowed to, even though he had refused treatment. We interfered. We applied for, and received, conservatorship – and the right to medicate (but only for as long as he was in the hospital). Ben improved.  Ben was released, temporarily coherent and hopeful for his future. We lost our rights to help him. Ben went off his meds as soon as he was back in his apartment.

• A week later, he placed a bag of tobacco into his waistband to keep both hands free to keep shopping. He was off his meds, confused. He did not leave the store – but the police were called, and Ben was arrested for shoplifting. With our interference, the charges were dropped. Without it? He might have spent time in jail, with all the emotional and other life consequences.

 In the years following, when not in treatment, he was almost arrested several times more, always when off his meds:

• being “too friendly” at the mall – talking to strangers, in a place where he’d had great childhood memories.

• Singing on someone’s front porch, where he thought an old girlfriend lived

• Eating a bag of chips in the middle of a CVS, because he’d been wandering for 40 hours and was hungry, but didn’t want to shoplift.

In 2011, after my book Ben Behind His Voices was released, Ben himself was “released” from the group home where he had lived for seven years. Why? He was “doing too well.” During those years there had been supervisors PAID to “interfere”, and that had taken the burden off of us. Ben didn’t love it there, but it helped him grow up by being away from our parenting except on weekends. But, when he did so well that he actually landed a part-time minimum-wage job, he was “promoted” to his own apartment, unsupervised, where it didn’t take long for him to go off his meds. If we hadn’t “interfered” that time, he might have died in his own apartment – he was afraid to leave, was not eating, and had missed a week of the job he loved  (though he managed to call each workday to say he didn’t “feel well.”). We drove the streets all night, looking for our missing son. We were told no one was “allowed” to intervene by going to Ben’s private apartment. But we insisted on help – we screamed for it, interfered enough to get the police to go to Ben’s door, and he was admitted to the hospital once again – for seven weeks, until he would agree to go back on the meds.  This, too, took family “interference”, in partnership with the Chief of Psychiatry and Ben himself. We got lucky.  Ben had survived the “independent living” experiment. Many do not.

Ben now lives with us again, and house rules prevail even if the “law” does not permit our interference. We stay up every night to make sure Ben takes his meds. Other than that (and other House Rules of cleanliness, non-smoking, courtesy etc.)  Ben makes his own decisions – and has earned the right to. Because we have interfered in his life, he has been able to develop a life, one he recently told us he is “so proud of.”

So, yeah, we interfere - because Ben lives with us, and we can.  But if he were to decide not to follow the House Rules, our family has absolutely no legal recourse to help him continue his success. Who will help him if/when our family cannot?

Without his “interfering family”, my son has been homeless. He has come close to being in prison. He has been mugged - twice. He has been left to die –all in the name of “patients’ rights.”  Indeed, that is where many of those with mental illness are today. We closed the hospitals years ago, but didn’t replace them with support.

Helicopters can be for emergencies too – and no one would ever criticize their usefulness when they hover for a good reason. Give families of those with mental illness the support and education they need to make good decisions about when/how to help. And give us the legal right to interfere to save our loved ones.  Let us hover, and interfere if we have to. Lives depend on it.  

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)

So let's be reminded of the following facts, in Rolling Stone's coverage of the segment:

"The aftermath of a mass shooting might actually be the worst time to talk about mental health," he argues. "Because, for the record, the vast majority of mentally ill people are non-violent. And the vast majority of gun violence is committed by non-mentally ill people." The host cites a February 2015 report by the American Journal of Public Health, which states that "fewer than 5 percent of the 120,000 gun-related killings … were perpetrated by people diagnosed with mental illness."

Yes. Let's not stigmatize those with mental health issues every time a crime like this occurs. But also, yes. Let's pay attention to our broken system - and fix it. Segments like John's, factual as well as (weird but wonderfully true) entertaining, point the way.

Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.

As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".

Once again, the system closed its eyes to the need for support and left a family alone to cope.

Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues."  How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?

She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.

When will we ever learn?

When will we pay attention to warning signs?

When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?

We are one of those families.  For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life.  The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.

We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM.  There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.

But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately.  He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.

He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.

Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?

Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.

We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."

According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."

Or living with their frightened, hopeful, families. Attention must be paid.  

Sons with Schizophrenia: A Tale of Three Mothers

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.

Love matters…but it’s not enough

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.

Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “ 

Later, she struggled with whether or not to let Zac get his own apartment.  In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''

Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.

Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.

Young Holmes Family

Holmes Family Today

Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.

Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.

She writes:

(01-08-2013) I can never forgive myself for not knowing that this would happen.

How could I have known?...

Forgive yourself…And then forgive the people who hate your guts and want you dead.

(02-01-2013) I had a good kid who never harmed anyone.

That changed; his brain changed.

(03-22-2013)

A memory of when he was in high school…we are hiking up a hill

I can’t keep up.

Jim stays behind to make sure I am okay.

Isn’t that empathy?

Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura?  Three mothers – three sons with schizophrenia.

What made the difference?

Is it love? I highly doubt it. These boys were all loved.

Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.

Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.

“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs

Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?

I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:

Of course, the majority of my guys are imprisoned for killing their parents.

This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?

The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.

These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed.  And the rest…is out of our hands.

There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.

Three mothers.

Three stories.

Three outcomes.

Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.

When will we ever learn?

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

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.

The result of the stability of consistency with his treatment? Ben has continued to rebuild his future; in fact, he has far surpassed the modest hopes presented at the end of my book. Yes, despite the severity of his schizophrenia (many doctors told me that his case is "very severe"), Ben not only continues to attend community college, but now has held a job as a restaurant waiter for ten months! He is one of the best waiters there, the only one who has customers come in and request to sit in his section.

He, also miraculously, has started to have a social life. He has friends. And he is driving a used car that he saved very slowly for. It's not fancy, but it has added to the fact that he is now feeling like a man. Though he now lives with us, he has earned the position of no longer feeling embarrassed by his life. Sure, he has to be home twice a day for us to supervise his medication, but it's a small price for us all to pay, for the fact that he is feeling good about himself, realistically, for the first time in forever.

All it takes, as we know all too well from experience, is two days without his treatment and he will be back in the Emergency Room, waiting for a bed in the psych unit. (This has happened eight times before.  Trust us. Only two days to go from employable to certifiable).

We Need Foresight, not Band-Aids!

So - I offered to pay for those extra ingredients myself. $80 per month. Not so bad - for me. But what if Ben were alone, no family to support him, living on the meager disability payments that are supposed to cover room and board but do not? Do you think he could find $80 per month? Can others in that situation? No. So the result would be: not taking the medication. It's one step off a very steep cliff - and the fall is not pretty.

Unfortunately, my relief that $80 per month (challenging to find, but we'd manage) would solve our problem was short lived. The pharmacy called back to tell me that it is illegal to charge me for part of a medication. We have to pay for the whole medication - hundred of dollars per month. The only other choice? He has to take the pills, and Medicare will only cover one formulation of those: the ones that Ben finds impossible to swallow. We do NOT have hundreds of dollars available per month after bills are paid. Most families don't. But what choice do we have? This is NOT FAIR - to Ben, or to us.

Why did Medicare make this coverage change? To "cut corners", to "save a few bucks." But, in doing so, they are risking - no, endangering- my son's life.

How stupid and shortsighted can you get? While Ben is not violent by nature, others with untreated schizophrenia can be. Or their intentions are good, but the "voices" convince them that violent actions will lead to the good outcomes they desire.

How many shootings in movie theaters do we need to know that we need to provide treatment for mental illness? How many news stories of untreated schizophrenia (despite desperate families begging for hospital beds, enough days of help, enough support for staying in treatment and taking steps to recover one's life and dignity) does it take to get smart? To provide support for a chance at recovery?

Deeds: “The system failed my son”

When mental illness goes untreated, lives are endangered. The lives of those living with the illness (who wind up in jail, homeless, or dead), and the lives of those they could hurt in the attempt to obey their hallucinations. Aurora: untreated mental illness. The attack and suicide of Senator Creigh Deeds' son Gus: no beds available in psych units for the help they begged for. Virginia Tech shootings, the Unibomber's plans, the list goes on and on.

Treatment could have helped them. Treatment could have prevented tragedy. Saving pennies is not the answer. Provide treatment, structure, community, and purpose: the four pillars of recovery I will explore in my next book, Ben Beyond His Voices.

Meds alone do not change lives challenged by mental illness. But, for many, they sure do help provide the stability that is needed to rebuild futures. Take this away from my son - or even change the routine - and his carefully structured rebuilt life can come tumbling down faster than you can say "tax break."  Too many federal and state budgets are cutting mental health funding to make the numbers look better. And look at what happens every single time you try that ploy. Lives are lost, and much more money is spent on the tragic results of this lack of foresight.

Prevention is cheaper than tragedy. Medicare, Don't be stupid. Let my son, and others like him, have the treatment they deserve. Give him back the meds that work. Let him continue to be the taxpayer he has fought so hard to become.

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.

In the Name of Love. (mask created by Young Adult with Schizophrenia)

But with the treatment we “insist upon?” He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now — which is the parenting contract lasting a lot longer than we’d ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is “totally responsible” — which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben, no longer “behind” his voices all the time.

We applaud his independence, and hope he has a car and home of his own someday.  We’d like our lives back, too, believe me. But not at the expense of Ben’s life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we’d had high hopes.

So, dictator Mom makes sure he takes his meds and does his chores. We also provide rides to and from work when we can — which is most of the time (one of the reasons I often work from home). If we can’t, we trust him to figure it out.  We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader reviewer above, advocate for “patient’s rights” to refuse treatment. We advocate for Ben’s right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends -  and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.

It's his right.

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!

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.

4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben's face and confirmed he had been there recently for bloodwork, this visit somehow was "not in their system". So we did the blood work again, just in case. Thank goodness we did.

5. Meanwhile, we are now dangerously low on Med A. If Ben doesn't have a full dose of it, he will exhibit a  serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.

6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn't been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben's, but that she is out to lunch. But I can leave a voice mail message.

7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.

8. I wait three hours. No call-back. So I call the main number again. "Oh, didn't they tell you? She's on vacation." No they did not.

9. I call the nurse again. He spends ten minutes telling me why he can't do anything to help me because the NEW paperwork (from this morning's blood test) is "Pending", and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere - and yet the one or two things I ask his "case management team" to help with - keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to "manage" his case?

10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day. 

…but not disaster, if we catch it in time!

Crisis averted. But - if not for an empathetic pharmacist - Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.

So - case managers - if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) - PLEASE, at the very least:

• Let us know if you are going on vacation, and who is covering our case

• Have the front desk be aware of days off and what else a family can do

• Notice if paperwork is late. Call the family, and your client.

• Hey - please don't wait for a crisis. Call your client once in a while and find out how they are or if they need anything.

We may seem like the "easy case"  because families do a lot of the work - but believe me, we need your support.

Do we have to be a squeaky wheel to get it?

Does there have to be a crisis to get some help? Some answers?

Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I'll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us - not just our family, but any others dealing with a family member with special needs: What would happen if we couldn't be here? What will happen when we are gone?

Families cannot do it alone.  The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don't let us slip through to the end of our ropes.

Thank you. 

Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.

What's the Difference When Your Child's Illness is in the Brain? "Sympathy"

60 minutes recently did a segment on the plight of families dealing with mental illness.  They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.

Deeds: “The system failed my son”

Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.

Read more: Virginia State Senator Creigh Deeds' Son Evaluated and Released Before Stabbing | TIME.comhttp://nation.time.com/2013/11/19/before-senators-stabbing-a-shortage-of-psychiatric-beds/#ixzz2rzmupJD6

Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.

How I wish they had interviewed me, too - but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.

In the "overtime" segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.

What's the difference, according to one of the parents interviewed? "Sympathy."

Watch the clip here: http://www.cbsnews.com/videos/nowhere-to-go-mentally-ill-youth-in-crisis

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

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

Amanda 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 NPR 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.

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?

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.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

Mental Illness Treatment Laws: Does Connecticut Lag Behind?

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.

We have struggled to get our adult loved one help and been thwarted by the restrictive mental health treatment laws in Connecticut.

We were fortunate to get educated and supported by NAMI-CT, but other families are not so informed, and eventually feel they have no choice but to give up - and their loved ones wind up homeless, in jail, in a nursing home, or - worst - threatening others and/or acting upon delusions that are very real to them, and may include violence.

treatment works...when you can get it

While I understand that it is unclear what led to the events in Newtown, it is clear that our civil commitment laws are in need of reform.  Nancy Lanza, I will venture to guess, was left with no help, no legal right to mandate help for her son - and ended up guessing how to bind with him. In her case, she must have chosen the only thing she knew from her own childhood: target practice.

Mental Health treatment could have made all the difference.

Too many families, like ours, are left feeling helpless and unsupported. Eventually, our family was able to make educated guesses about how to help our son, because of NAMI, memoirs, and other sources of information. But not all families know how to find this info, and even we sometimes guess wrong. Trust me, no family should have to do it alone. We wind up broke, scared, frustrated, and grieving for the loss of hopes, dreams, and someone we love.

Mental health services make all the difference, and these are woefully underfunded, confusing to find, and difficult to maneuver.  The cost of not providing these services, as we saw in Newtown, is so much higher than funding them, both emotionally and yes, bottom line, financially.

The last time my son had a relapse, the government wound up paying for a seven-week hospital stay instead of part-time residential staffing that would have helped him stay stable.

You add it up.

Let's vote for our futures, and for the one in four families left dealing with mental illness all alone, and for the possibilities that can exist for those who receive treatment (assisted as needed) and support services.

We need a Kendra's law in Connecticut. It might have helped us so many times - and it might have helped those in Newtown.

You can read more about our story in my book, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. or I will be happy to come and tell you in person.

Thank you.

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?

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.