Happier Made Simple™: The 7 Core Phrases and Mental Illness in a Loved One

In the decade since Ben Behind His Voices was published, I've had the opportunity to tell our family story to a lot of people - sometimes more than once, for it is ever-evolving.

If you love someone with schizophrenia, you know this all too well. It is a life lived like a never-ending game of Chutes and Ladders, with moments of rest here and there.

The question I am most often asked, after sharing, is this:

"How do you stay so positive?"

Well.

When Life is Challenging…

It isn't always easy, as you may well know. But - here's the thing that continuously reveals itself to me, no matter what the challenge:

Yes, living happier is a function of what happens to you - no one gets through life unscathed, after all - but it is, eventually, even more a function of what you tell yourself about what happens to you.

And so, I finally wrote a book about it, and it launches officially in a couple of weeks. 

In it, I talk about the "Seven Core Phrases" of self-talk that get me through most situations, and keep me hopeful, though realistic - and, yes, happier.

Yes, living happier is a function of what happens to you - but it is, eventually, even more a function of what you tell yourself about what happens to you.

It's how I "stay so positive."

Let me be clear (and I state it up front in the book) - I cry too.

Life isn't about constant happiness. That isn't even a goal. But neither is it about dwelling on the negative when the time for action has passed, nor about stressing about things that may never happen.

So here are the Seven Core Phrases (meant to be said to oneself, not as advice to others, please) and how they help me when our family deals with challenge or disappointment:

These phrases can set your mind down a different path of association and action. In case of severe trauma, you need to process the shock and emotions first.

Be Here Now:  I use this when my son is in a good place (enjoy this conversation; savor the moment; enjoy his company) - and when he is not (this is where we are right now - what action do I need to take?)

It Is What It Is: This gets me past the moments of regret (why didn't I see the signs earlier?). disappointment (why was my son robbed of a chance to go to college?), and doubt (why me? why him? why us?). There may be no reason for Ben's illness. It simply is. Now what?

We're All Connected: Other families are going through this too. Other people have the illness. Let's talk about it. Let's help each other. Let's reach out. Let's thank the people who have chosen professions that help us (lawyers, social workers, advocates, psychiatrists, etc.)

This Is Good: Savor the moments when the stars align, and your loved one can communicate, eat dinner with the family, etc. Yes, even during Ben's ten hospitalizations, when the phrase simply meant "enjoy the vacation from caregiving for now." We remember what we savor, and learn from what we regret.

All Will Be Well: Depends on how you define "well."  Will Ben ever attain his childhood dreams? Doubtful, at least right now. We learn to adjust our dreams. And I have no idea if the Universe has a "Plan" - but sometimes it helps to believe that it does. Whatever gets you through. As I say in my book: All will be well, just maybe not the way your expected it to be.

Isn't That Interesting?:  Curiosity, and even humor, can lurk underneath the trauma and crises. There have been times (especially when in the company of others who get it) where humor has saved me from crashing; when curiosity instead of complaining led me to learn more, do more, find another way.

Whatever Happens, I'll Handle It Somehow: This gets me through more times than I could ever list. Loving someone with schizophrenia means a lot of second-guessing, a lot of waiting to see if the meds work, if they'll come home, if they will be Jekyll or Hyde at the family dinner. So we do what we can to prepare, and hope for the best after that. This phrase gets me through the times where worry is unproductive.

Want the book? You'll find it now on Amazon, in paperback or kindle - but pssst! On launch day Feb 23 the kindle will be only 99 cents for a limited time! - and I am now working on the audiobook.

I hope it helps. Even a little.

Randye  

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: 

Schizophrenia: Nearly Everyone is a “Long-Hauler”

We Need a Cure

The scariest thing about Covid-19, once you’ve been lucky enough to survive it, is a set of residual symptoms that are still being discovered. I’ve heard everything from “it’s a year later and I still can’t taste my food” to “I still get winded six months later and can barely walk up a flight of stairs” to stories of teeth suddenly and mysteriously falling out months after recovery.

People experiencing symptoms like these are called Covid long-haulers. There are Facebook pages and groups where stories and support are available.

But my son, Ben, and others like him? Schizophrenia long-haulers. This is the brain illness that just keeps on “giving” - challenges, changes, symptoms, side effects, loss.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

My son is doing okay - actually better than expected - on Haldol now. This older antipsychotic frightens me, because side effects like tardive dyskinesia can be irreversible. Also, it is not known to work on the “negative” symptoms of schizophrenia (things the illness takes away from the person, like ability to feel joy). Still -it’s not too bad.

Some good news: (must mention, Ben no longer lives with us, so some of this may be due to the excellent staff at his group home, and a life less dependent upon our family role as landlords etc)

• I can converse with him. Actual give-and-take conversation.

• We have actually watched an entire movie together.

• He eats my cooking again, after years of saying “smells great, I’ll have some tomorrow” (I think he had some sort of belief about my food that prevented him from ever taking a bite in those years).

• He has also gone swimming again, and plays beautifully with his nieces and nephews. In fact, they have a relationship with “Uncle Ben” for the first time in years.

• Haldol is available as an LAI (long-acting injectable) , so Ben isn’t faced with a daily decision as to whether he “needs” antipsychotic meds or not.

But, some of the sadder news:

• I do see some trembling in his hands now. Would he ever be able to work as a waiter again, the job that kept him afloat before Covid closed restaurants?

• He is suspicious of doctors, dentists and any medical testing. This is fairly new. He will not have his teeth cleaned.

• When he isn’t hyper- focused on something I see the eyes darting around the room again, and wonder what he hears and/or sees. He will NOT talk about this, or admit to it.

• He talks once again about unrealistic plans - like opening his own restaurant, becoming a college professor.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

Daring to Hope Again: Faith or Foolishness?

The game of Schizophrenia Recovery Chutes and Ladders (or Snakes and Ladders, for you Brits) continues.

In the past few weeks, Ben has climbed some ladders, made some progress. Yesterday's family visit was full of simple pleasures again:

• a car ride that was full of conversation, not the torture of awkward silence and small talk

• Ben and a friends watched a movie in our living room and actually made it through the whole thing

• We talked about his future, his feelings, his sobriety journey (now counting again, 15 days)

• Ben was less defensive, more forthcoming

• I brought up my concerns about his current med (Haldol) and my wish that someday he might try Clozaril again so as to avoid the side effects (tardive dyskinesia, mainly) of the Haldol - and Ben seemed to listen. (not agree, but he did listen)

These days are miracles. These days give me hope, though I've learned not to predict beyond a good day.I don't predict. But I can hope.

• I can hope that Ben will continue to value his sobriety and the meetings that help him.

• I can hope that the side effects of the Haldol are not permanent.

• I can hope that he can again be a part of family celebrations.

• I can hope that, perhaps, one day, he will gain insight into his illness and serve as an inspiration to others.

• I can hope that he will, again, be able to work, to have friends, to feel purpose and joy.

• I can hope for a cure for schizophrenia.

Hope is not foolishness. Hope is a celebration.

If I'm wrong, at least I'll have had a day of seeing my son's smile again, or actually enjoying talking with him, of seeing that he might be able to get some of  his life back.

And that I can't do it for him. All I can do is love him (always), set limits (whenever I have to), and do the behind-the-scenes advocacy that is necessary to keep him afloat.

(where are his social security benefits?  Does he have money to pay his rent? Can he work again someday? Where? How? Are there activities he can participate in right now, to give him the structure and purpose he lost when he lost his job due to Covid and then turned to smoking weed instead? ....the list goes on. We orchestrate behind the scenes.)

A good day. I'll take it. 

"Mom, My Future Seems So Bleak": Feeling the Heartbreak

My son. He is trying to hard to get his life back. If he weren't trying so hard, maybe then I could detach - let go just a little bit more than I've already trained myself to do.

But it's heartbreaking. For me, sure - but mostly for him.

The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.

I can feel why, sometimes, it may feel easier to just fall down the rabbit hole of non-treatment and go back to a problem that's more familiar: getting out of the hospital.

Square One (or two, or three), when you've climbed so far ahead of it in the past, is really a  hard spot to land back on. Ouch.

The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.

That's part of why a fresh obstacle to Ben's renewed recovery journey (after the Covid-19 fall) is now: getting clean. He has returned to smoking pot - never a good sign - which brings all the usual "side effects": lies, denial, the illusion of accomplishment, poor decisions, loss of money, lack of motivation.

Shit.

Road to recovery…Far from Clear

The first signs were during a home visit - halfway through a fantastic visit, after Ben "took a walk to Starbucks", he returned home completely stoned. And denying it. I took him back home and told him he could lose his placement in the group home, and also I would not be allowing him to visit until the truth - and a plan of action - came through.

One day later, a very contrite Ben called to apologize, in tears, and ready to tell the truth and "get clean"...and he did - for 35 whole days. He even went to meetings, and shared for the first time ever.  Yeah, maybe "it's only pot", but for Ben it spells disaster.

Then...a relapse. He  took 2 hits from "some girl on the street corner" (after refusing once, but then he caved) because "I thought it wouldn't really make me seem stoned, and it might make me feel better about my life."

Another call from his Group Home.

Another frantic message of denial from Ben

He can lose his housing. He lost his home visit. I feel stuck in a cycle of Groundhog Day-like repetition.

I gave Ben a day to come clean with the truth - and he did. We talked for over an hour. He is so angry with himself.  He regrets giving in to temptation. He says all the right things...but he has said them before.

Still - what breaks me apart are two things: his voice, cracking with tears and emotion (rare for those suffering with schizophrenia), and his statement:"

Mom, My future just feels so bleak."

Oh. My.

He has lost everything he works for years to build - his work, his car, his friends, his sanity, his place in our home -- and months of his life. Unemployment is a huge blow - I've been there, and so has my husband, and maybe so have you - but imagine going through it when you've also "woken up" from the longest hospital stay of your life, to find that your world has fallen apart.

And now - some steps we've all agreed to, to provide more purpose and structure. Yes, he wants to work again someday - that waiter job was everything to him (but can he work? with hands trembling from Haldol? we shall see) - but for now, all I can do is remind him that:

• he has rebuilt his life before, and can do it again

• there are people who want to help

• Getting too cocky, and thinking you can get sober alone, seldom works for him - and is often a  sign of danger.

• We love him

• For now, it is good to sign up for some activities offered to him, even if they fall short of the full-time work he used to have.

Here's where we are. Ben is in a group home. He is rebuilding again after a 5 1/2 month hospitalization.

The Four Pillars, our present day version in this new Recovery Journey:

Treatment: Haldol by injection (different medication for Ben than the one he'd done so well on - in my eyes - before, but he swears he "likes it better".

Plus Side: Injection form much easier to manage (time-release)

Minus side: I am seeing tremors (could become permanent). Ben hides these, and denies their existence.

Structure: Some. Group Home meetings, and now some "Anonymous" meetings. He needs much more structure. Don't we all. He fills his time taking long walks, but his life is too aimless (considering pre-Covid he worked full-time)

Purpose: He was stripped of it when Covid cost him his job. Purposelessness sucks.

Community/Love: Well, he still has us, his family. But now it's weekend visits, and only if he is clean and sober. He has lost the right to visit us more than once - along with my trust.

So - we move ahead. With new steps. One day at a time.

2 days clean/sober, and he has also learned some things. Hopefully they will stick.  

Hope for "Normal" Days Springs Eternal

"Mom, I sometimes I thought I'd never actually have a pleasant day with Ben again. Today was so great!"

Exactly my sentiments, honey.

Families of those with Schizophrenia know:  "normal" days are miraculous. And we treasure. Every. Single. One.  Because, well, we might not get more of the same. no guarantees.

Hope springs…and sustains

Blog followers here know that we've had quite a few, um, adjustments to make re Ben in 2020-21. From full-time employment to hospitalization, to back in group home care...and now, addiction to contend with. It has been a tough year for us, sure --- but so much worse for Ben, especially now that he is "well" enough to realize that his life has gotten so messed up.

He has lost so much.

Stupid Schizophrenia. Thief of lives.  Robber of relationship. Obstacle to useful employment. And so much more.

And yet. There is hope - and moments to treasure again. Grateful, grateful for:

Ben, 25 days clean now. (his addiction is marijuana). One day at a time. He is going to meetings. Fingers crossed. But - wow - it is so different when he isn't stoned.

Two days in a row of family fun - yes, fun! Ben is on Haldol now - not my favorite, as I fear the permanent side effects, but Ben seems happier on it. Letting go of control...as best I can. It's his life. But I must say that things are better than expected, even though Haldol doesn't do much for the "negative symptoms" of his brain illness.

But  - some miracles in the past few days, on family visits:

He went swimming! He used to love it so much as a boy, but for some reason hasn't gone in the pool for five years (I suspect some sort of psychosis belief that kept him away, but I'll never know for sure) -it was always, "Maybe next tiem" - but he went swimming with his young nieces and nephew, and actually played with them. Played!

We did a family trip to the local Aquarium and Ben was actually helpful - the kids adore him, and he was present and involved.  And - during lunch, he turned to his sister (as the kids were doing their "I-haven't-been-to-a-restaurant-since-Covid- and-forgot-how to-behave" routine) and said, "wow, sis, you have your hands full, don't you?" 

Empathy!

If you have a relative with SZ, you know what a miracle this is.

Yeah, he's trembling a bit, and I fear the presence of tardive dyskinesia - a possibly permanent side effect of the med Ben is on.

But all we have is today, and what is, is.

So I'll take the miracle of having made some more good memories with my son. Grateful And always hopeful, and ever watchful.    

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

Out of the Hospital, Not Out of the Woods

It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise - but we family members know to enjoy the moment, and prepare for a fall.

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

Timetable of deterioration:

(first few days covered in more detail in the earlier post):

It doesn’t take long to lose ground

Thursday, Feb 4th - pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.

Friday, Feb 5th - I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate. 

Monday, Feb. 8th - the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess - but he is still not good. Families know. 

Thursday Feb 11th - I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.

Good news: he is wearing a mask. 

Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.  

Man, I hate to be right about this. But I knew  - I knew - he was on the wrong medication, and it was only a matter of time.

He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day. 

We still have not heard a peep from his psychiatrist.

Feb 15-19 - I am so grateful that Ben is in B Home, and not with us. I think my heart would break every day seeing him like this. Texting and phone class, even facetime, are helpful. He’s pretty good on the phone.  

I do have a long conversation with the B Home Social Worker, who seems caring and informed. She actually listens to me as I share Ben’s medical and work history. She is amazed that he used to work full time. I’m sure she can’t see that possibility in him, the way he is now.

Meanwhile, the money questions pile up. Did Ben have Social Security reinstated? I’ve been working on this since October.

I speak to Social Security, to DSS, to his benefits manager, to the residence staff….and everywhere there is a different story. 

Ben lost medical coverage...no, wait, maybe he has it.

Who will pay his rent? 

Are his medications covered? Yes, they are. No, wait, they aren't. 

One system says yes, the other hasn’t gotten the memo. 

This is a SNAFU paperwork nightmare. 

I am told that if Ben weren’t on the “fast track” these decisions would take two years. Two years! 

Feb.20-24.

A new wrinkle.

Ben’s case management team is suddenly being disbanded. He has been within them for 18 years.

Now, a whole new team to train. I hope they’ll hear our story. I hope they are better.

I hope the doctor is more attentive, knowledgeable, helpful, caring. 

I am wishing for a lot. As ever.

Meanwhile, Ben’s “rent” has not been paid because no one knows where his benefits stand. I write out a check for almost $1200 and mail it in to B Home. I cannot afford this. But of course I pay the bill.

And, Ben is failing. The B Home staff tells me he is twitching, gesturing with his hands, mumbling, eyes darting off to the side. Also, He’s isolating in his room whenever he can, listening to his music. 

This, my son who waited on a full station of tables just a year ago and kept it all straight and came home full of joy about the social interactions.

I know these signs. The voices are getting louder. 

God, please help my boy.

The psychiatrist has yet to order oral Haldol boosters or move up the injection.

This didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Feb 25 - finally, Ben is scheduled to get his next long-acting Haldol injection. It’s happening tonight.

But no.

At 7 pm I get a call from B Home. The pharmacist doesn’t see any medical coverage and won’t fill the prescription. This just becomes a thing at 7 PM? 

“Don’t worry,” they say. "If he gets more symptomatic we’ll just get him back to the hospital."

What?

But no one even knows if he has medical coverage. The case is still being “decided”, according to the DSS case manager I spoke to yesterday. This has been going on (I repeat, sorry) since October.

And this didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Many many phone calls later (bright spot: the benefits manager calls me back even tho it’s past her workday hours), I am assured this will be straightened out by morning. If Ben gets through the night without full-blown psychosis.

If.

I hold my breath. But I do sleep. The benefits manager told me to.

Feb. 26 (today)

We think he’ll get the injection today. We think it has been straightened out, that the pharmacist will fill the prescription, that the nurse will arrive, that Ben will not run away from her (that has happened before)..

I’ll believe it when I get the final word. 

No, out of the hospital does not equal out of the woods.

And so many others have it so much worse. At least Ben has a roof over his head, staff to manage his care, a family that loves him.

But it could be so much better.

Quoting Willy Loman (again, and just as fruitlessly it seems) from Death of a Salesman:

 Attention must be paid.

Finally...A New Word About Antipsychotics and Weight Gain

If you were asked to take a medication (for an illness you don’t believe you have) and warned that the side effects might include:

• fatigue

• drooling

• sexual disfunction and

• weight gain,

would you take it?

Silly question. 

And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.”

Seriously.

Still so much to learn

This has been one of the reasons my son hates to take his meds, and refuses or pretends to swallow them whenever possible.  For years, we have worked around this, but yes. I get why.

Finally, though, there is some explanation about the weight gain, which may lead to more research and better medications.

According to new research,  the problem is  in " blocking certain dopamine receptors, known as D2-like receptors.” This is how most antipsychotics work.

But – and I never knew this before (not a neuroscientist, but I sure feel like one sometimes) - “the body actually has more dopamine receptors outside the brain than within it”.

Whoa! This is according to Dr. Zachary Freyberg, the senior researcher on the new study.

And where are these receptors? Many are in the pancreas, too, and “when the researchers used antipsychotic medications to block the pancreatic cells' D2-like receptors, that ramped up the production of both glucagon and insulin. In the body, unchecked release of those hormones could quickly lead to a loss in insulin sensitivity and chronically high blood sugar levels.”

So – the weight gain my son experiences when on these meds is not his fault.

So what now?

Researchers are looking to find new meds that don’t block dopamine, and find other ways.

Wouldn’t that be nice? Please, yes, more research, new treatments. Save our loved ones.

In the meanwhile, I will add that three things have helped my son keep his weight gain to minimum: physical exercise (he lost at least ten pounds when he began to work as a restaurant server), keeping the carb intake down (not so easy for a vegetarian, but the more he used vegetables and fruits the healthier he got), and keeping an eye on boredom eating.  the busier he is, the better his eating.

This isn’t earthshattering news for any of us watching our weight – but it has been nice to see that even on psych meds these methods can help.  

Still – when he lost his job due to Covid crash (economic, not medical), his activity went down and boredom went up.

So – please – keep that research coming.

And thanks for some good news.

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?

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

It was so much easier then…

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

I have this recorded on my iPhone.

Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.

I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure.

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

I was right. Unfortunately. Shit.

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

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

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

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

This medication has brought Ben back, sort of - and it breaks my heart to see how hard he's trying to seem like his old self - but he definitely is not the same. As my daughter says, “I look in his eyes and he just isn't there.”

Best - and hardest - decision we made was to have him discharged to a group residence (let’s call it E house)instead of to our home where he'd been living for the last nine years. He is doing his best to be enthusiastic about this. He has not once guilted me, not once complained about his new situation. Yet. I’m crediting the group work he did in the hospital, for that (and for the apology).

Still, it’s such an echo of where we were back in 2003, when Ben was accepted into his first residence. The house seems nice, the staff seems caring. Hard to tell some of the staff from the patients...until you look and listen a bit more closely. Ben has his own room (for now), and I’m grateful there is a plan in place to ease him gradually into independence.

But. And there is always a but.

He is slipping. He’s on a time-released injection of the haldol. This is good, until it starts to wear off. And he wasn’t kept in the hospital long enough to gauge the half-life of the injection. Daily boosters can be given orally, but he hasn’t been prescribed any daily medication except something to prevent side effects (like twitching.)

And every day since I dropped Ben off, he gets worse and worse. And it has only been 4 days.

I’m spared long visits because of the pandemic, (sorry, but it’s true. Visiting is painful when he deteriorates), but when I dropped off his Medicare card the day after he was admitted I could see it. Couldn’t focus, trying too hard to be sociable, repeating things. I know the signs, believe me. And...I’ve seen him when he’s truly functional (or what passes for it when your brain is filled with constant interference) and believe me I know the signs.

We cannot wait for his next injection appointment. It will be too late. We need to fix his treatment NOW.

I call the staff, from their parking lot, to tell them what I see. Even though they barely know him, and have never seen him well enough to handle a restaurant rush and still get kudos on Yelp, they see the decline too. They agree with me. So....I call his case manager.

This is a a Friday.

I’m told the psychiatrist (Dr. K) will check on him on Monday.

I say Monday will be too late.

Case manager says he'll talk to Dr. K and get back to me.

Of course he doesn't get back to me.

The staff at E house tells me not to worry, as they will "get him to the hospital if it gets too bad."

This is exactly what I am trying to prevent.

It’s like I have to train a whole new set of staff.

Hello, please meet my real son. This is the one who, when balanced, can get a 50% tip from a happy family. Who can make a great speech at his sister's wedding. Who can muster some genuine caring and empathy for others.

When treatment works, he is more than just “stable”. He is wonderful.

And right now he is neither. He needs better medication and he needs it now.

It’s such an echo of 28 years ago when he was first placed in a residence after his 5 hospitalizations in that one year.

Only then, he was 21 and I was 51. Now we are approaching 38 and 68. In all that time, are there no other options? Have they not realized that family input matters?

When will this horrible illness get the attention it deserves?

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

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

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

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

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

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

Fast forward, I guess…past more court hearings, renewed conservatorship, Ben’s refusal to go back on the meds that work best for him, awkward zoom calls (no visiting allowed, thanks Covid), paperwork trails to get him back on disability and out of debt. Where are we now? 

He finally seems stable again – but he’s on Haldol, a medication that can have devastating – and permanent – side effects. Also, it doesn’t help much with the negative symptom of schizophrenia, so I’m not a fan. But Ben has refused to do the blood draws required to be on Clozaril. So here we are.  And - so far, so good. 

It seems okay. He called me yesterday – three times, as he needed a favor – and we actually had a conversation: about his bank account (yes, I deposited money so he won’t be overdrawn), his car (repossessed, and he’ll have to declare bankruptcy and start over again), his housing (back to a group home, which has thankfully accepted him), about origami (he taught everyone on the unit how to do his favorite creations, something he recalls from years ago), and even about politics. He is aware that we have a new President, and that in itself is a miracle, since five months ago all we got out him was the occasional grunt and suspicious staring and mumbling to his voices.

When Ben learned that I had taken care of his affairs, he said, “Mom, you’re the queen of the world” – and he meant it to be funny, not a delusion. I have my son back – well partially. As always, I'll take it. Better than nothing.

In one week, he gets placed in a residence with a day program included. He has no car, no job, and will be living a half-hour from us. But it’s better for him, and for us. I hope and pray that he doesn’t walk out the door of that place when the nurse is coming with his medication. It had happened before. And then– back to the psych unit.  The revolving door.

I have my son back – well partially. As always, I'll take it. Better than nothing.

But, for now – we hope. And express thanks to the staff that has kept him safe for five months, the medication that seems to be working, and that there was bed available for him.

Can things fall apart again? Oh, heck yes, you bet they can. But dare we hope?

Absolutely. We dare to hope. No use predicting disaster (then we’d have to go through the emotions twice, and all we’d get is the booby prize of having been “right”. (Ugh) – all we can do is our best to prevent it.

Welcome back, Ben. I’ve missed you. Not the illness – I hate schizophrenia with all of my being. But now that I see glimmers of my son again. Yes. I’ve missed that. 

One step at a time. And avoid the rabbit holes. 

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.

Partnering with Researchers for Brain Awareness Week 2018

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

You can view the story here!

The Precarious Jenga Tower of Life with Mental Illness

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.

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.