The Extra Innings Movie - and Podcast

A few years ago, I had the honor of speaking at an event  to increase mental illness and suicide awareness, and to built support for an independent film called "Extra Innings." -described this way on  imdb: "Set against the enchanting backdrop of 1960's Brooklyn, Extra Innings tell the story of a young man who is caught between pursuing his dream (baseball) and staying devoted to his Syrian Jewish family that is afflicted with mental illness."

I have stayed in touch with the creator of the film, and last night was honored to be a guest on his podcast.  We talked about schizophrenia, family, stigma, support, and so much more.

Listen to the Full Episode: talkradio.nyc/shows/extra-innings
You can see or hear the podcast here: 
or here.

Meanwhile, about the movie:

It did get produced and released - and was winning awards all over the place and set to go to movie theatres...and then Covid hit. We all know all about that.  But - the good news is that you can now see it on Amazon Prime. Don't miss it!

As for the podcast, here's what Albert had to say:

“The love is pure, but the rest is difficult. I wrote it for families to not feel so alone.” Randye Kaye on what motivated her to write her book chronicling the journey of the development of her son’s mental illness.

Check out this exclusive clip of Extra Innings: Covering All the Bases! This week’s guest was actress and author, Randye Kaye.

Randye Kaye makes her living as an actress. In 2011, she published her memoir Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, based on her own experience understanding and living with her oldest child’s schizophrenia. She hosts two podcasts: The Life Talk Show and Schizphrenia: Three Moms in the Trenches.

Find More about Randye Kaye
Website: randyekaye.com

Albert Dabah is a certified life coach and therapist who began his career as a social worker. He founded his video production company, Simba Productions, in 1979, and recently directed and wrote his first feature film, Extra Innings, which is based on his own life.

Life Coaching: adabahcoaching.com

#ExtraInningsMovie is available to stream on Amazon Prime, and on demand at Google Play, Fandango, Apple TV, Vudu, and DVD through our website at extrainningsmovie.com
Watch the trailer! bgpics.com/movies/extra-innings/
Watch Extra Innings: bgpics.com/movies/extra-innings/

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?

Schizophrenia: 3 Moms in the Trenches Podcast

In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam "Mimi" Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.

audio podcast or YouTube video

So - we met each other (virtually, of course - what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us - and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia - if they are in a place to want to hear about our side of the story.

Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) - but our hope is that the content is there for whomever is ready to hear it.

Here is the description:

Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) Miriam Feldman - Artist, Mom, Author "He Came in With It" Mindy Greiling - member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can")

Podcast can be found here:

YouTube  (please subscribe to be informed as each weekly episode comes out!

Thanks!

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.

Who's Jerry? Helping a Child Understand Mental Illness

Mommy is acting funny.

Daddy yelled at me for no reason.

Why is  Mommy in the hospital? 

How can a brain be “sick”?

Finally, a picture book for children that addresses the most secret of secrets: my parent  has a mental illness.

We follow little Imani through her confusion, sadness, loss, and adjustment as her mother reacts to her inner voices (one named Jerry), lashes out at her daughter,  goes to the hospital for treatment, and finally returns home, with her illness under control. Through it all, Imani’s father provides support for her. 

if you know a young child who is dealing with this in his or her family, this lovely book is a great place to start. It could be the key to opening the conversation we seldom know how to explain.

"Fix What you Can": Apt Philosophy for Family Mental Health (and book review)

Mindy Greiling and I have many things in common, though we've never met. The biggest shared experience: we both have sons with schizophrenia, and we haven't given up on them. As she says in the epilogue of her new book,  we are "the best mothers we can be."

As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And "happy endings" are, often, only fleeting respites from trauma, until the next chapter begins.

Still, we love.

Still, we hope.

Still, we fight.

Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative - a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She's received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud. 

But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family's journey, and also her work to enact changes in the system.

I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don't).

When  I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps.  Since then, I've seen (and read) quite a few - and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about  advocacy and the way things work in the world of state legislation. 

Mindy Greiling is a fine writer - you'll keep turning the pages. You'll feel less alone, if you share this issue. And you'll get a really accurate ride on the roller coaster of  family experience with "recovery" - what happens after someone with severe mental illness is treated and released? I know this ride all too well - am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success. 

Highly recommended.

Can I Divorce My Child? : How Schizophrenia Splits Families Apart

how - and when - do you let go?

Another hospitalization for Ben, another crisis.

Another round of uncovering the truths behind the life he’d sworn he was managing well (“it’s none of your business, Mom”). In the five weeks since this latest breakdown, I’ve been unraveling and trying to piece together the strands of the web he’d woven, and all that was caught in it: the mess, the mounting debt, his addiction to marijuana, the car damage, the shopping sprees, the lies.

I am not legally responsible for any of this, but of course I am a mother and each day includes hours of work to talk with Social Security, Medicare, debt collectors, lawyers, banks. I am doing what I can to prevent the final collapse of the life he’d struggled - with adolescent (at best) decision making, to create, the nine years he has lived with us (no rent) and complied with our requirement that he take his meds.

Our nest was supposed to be blissfully empty by now. My husband and I have more than earned it. But this is my child…the baby I birthed and nursed, the child who was always so impatient to give you a present, the big brother who was such a role model and friend to his sister, the student who was a John Hopkins scholar in eighth grade.   

How much do you let go before the guilt chokes you? I think I know now. Ben cannot live with us anymore, if he ever gets back to the “almost normal” he had before he took himself off meds. I must turn him over, once again, to “the system” – because I can’t endanger the rest of my family, or my own sanity, anymore.

But how can I divorce my child? Can any parent do that?

Another day, another new book about the toll when schizophrenia strikes the child you love so much. This one is called Fix What You Can: Schizophrenia and a Lawmaker's Fight for Her Son; I will read and review in a later post, but for now let me say that the reviews are stellar, and the twist is that the author Mindy Greiling is also a former legislator in Minnesota whose advocacy has taken the form of changing mental health laws in that state.

I am always a little bit jealous when a new book is released.  Mine continues to sell, but still I envy the excitement of a new memoir – the attention, the possibility, the initial sales. It’s a bit like the feeling when your friend welcomes a new baby - this child could grow up to be a Nobel Prize winner! A famous movie star! The President! – before the messiness of actual life comes in and the blank pages of that child’s life get filled in with actual reality.

But my jealousy right now is more about motherhood than authorship. According to the StarTribune in Minnesota, the author’s son, Jim Greiling,

“ … has passed his 40th birthday because his parents and older sister have been steadfastly behind him, providing emotional, physical and financial support through crisis after crisis. Through suicide attempts, incarceration, chemical dependency relapses, debilitating pharmacological side effects and more, Jim was never alone.”

That was my Ben, too –my 38-year-old son who was working full-time, managing much of his own life (but not his medication), and living with his family – until August 29th of this year.

That’s when it all came tumbling down. Ben was hospitalized for the ninth time – and he is still there.  I shared this story in an earlier post, but the update is:

• He has been court ordered to take meds but is still finding ways to “cheek” them and still talks only to his voices in the hospital (unless he needs toilet paper or something)

• He doesn’t want to see me because he is suspicious of me, and not even sure I am his mother.

• The secrets he kept, the lies he told, the damage and debt he covered up, the evidence of drug use…it all keeps adding up, beyond stress, to the dangerousness of his living with us anymore – no matter how much I love him.

What will happen to him next? How will he feel when/if he finally returns to “reality” to find that he has lost his credit rating, his car, his work (well, Covid-19 was to blame for that) – and, now, the security of living in a nice house in the suburbs with the family that loves him?

Back to a state-run (if we can even manage that) group home? This man who, before Covid economy, was working full time as a restaurant server, earning positive yelp reviews for his service and charm?

He worked so hard. But his main goal in life now is to NOT TAKE MEDS. And that breaks my heart. I am powerless to help him.

How can I divorce my child? Do I endanger myself and the rest of the family to keep a roof over the head of someone who hates me, who undermines me, who might possibly start a fire in the house when using the blow torch we found in his room?

Guilt, shame, reality, hope, love, helplessness, grief…I feel it all, for him and for all of us – my family, all the families who face this in a never-ending cycle of confusion and waiting for the other shoe to drop.

Mindy Grelling’s’ advocacy work took the form of legislation. Mine takes the form of education (I teach, and train others to teach, NAMI’s Family-to-Family class; I do public speaking share our story and advocate for change). We both are authors, and we both are devoted mothers.

But that delicate balance…stepping in vs. letting go. That is the hardest part.

For now, I’ll call my decision a legal separation from Ben. We never lose hope. But boundaries must be set, for there are many in our family whose emotional and physical safety  must be considered.

I hate schizophrenia so much.

Guilt, shame, reality, hope, love, helplessness, grief…I feel it all, for him and for all of us – my family, all the families who face this in a never-ending cycle of confusion and waiting for the other shoe to drop.

Noah's Schizophrenia: Review

Like many memoirs about a mother's experience with her son's schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support...all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity - the club we never wanted to be in.

What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine....a primer for the vast education a family needs to cope and help.

For me, this may not have been the easiest read on this day when my own son's Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing...what will happen to mine?

In one terrifying and frustrating scene, she shares her thoughts as Noah's symptoms worsen: 

As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.

Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben's sweet nature abounds. When he refuses meds? I don't know how long before the voices take over.

The author's son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.

I can relate. You, I hope, will too. She searches for "the truth" throughout this book, and all of us hope and pray it can be found.

He Changed His Shirt: When That's the Big Relapse News

Schizophrenia Steals Lives

My son, Ben, is back where he began his diagnosed-schizophrenia journey 17 years ago: in West Hills Behavioral Health Institute, though its real name (not West Hills) has been changed. 

He is the worst I have ever seen him: unresponsive, refusing ADLs (Activities of Daily Living, such as showers), wandering all day talking and gesturing to his voices. The best the nurse can say is that he "isn't causing trouble", and that "today at least he changed his shirt."

This , the best news about a young man who, before Covid-19, was working full-time and training new  servers at his restaurant job.

No, his life wasn't perfect, or even perfectly "normal." but it was a life. And if he didn't always make the best decisions, if lately he seemed lost and distracted, if lately he seemed to find new ways to spit his meds back into the sink...well, he was managing.

It was a life.

But now it's like the past 9 years of stability never happened. So what do I do? 

I clean his room, of course. Since Ben is hospitalized until we can have a hearing to get right to commit and medicate, I have a rare opportunity to snoop, and to clean.

I call junkluggers and pay to have 3 ragged couches and a broken arcade game taken away. I clean out his drawers and closets. I hunt for hints, for information to all the secrets he has been keeping. I find evidence of shopping addiction, more drug use than expected, and all the paperwork that explains his poor financial choices including leasing 2 cars at once. He is deep in debt, all the time saying "Mom, I have it under control."

No big surprise. But informative. As is the mounting evidence that his marijuana use had gone way, way beyond the occasional joint. I have 2 huge plastic bins full of water pipes, bongs, more.

I sort and toss and organize and scrub, preparing my son's room for the life he may never get back. I clean with hope. I clean because it's control. It's the only control I have. It's the only thing I can do for my son now.

But it's the evidence of his hopes and dreams that really get to me. 

From Ben's essay on Shakespeare's Henry IV: Parts I and II, written about seven years ago, a year or so after his 8th hospitalization and release - this time, to our home, where until recently he was thriving. Well, thriving for someone with a severe case of schizophrenia.

In the essay, Ben compares himself to Prince Hal (Henry V), portrayed at first, according to Wikipedia, as " a wayward youth who enjoys the society of petty criminals and wastrels" until he wises up (or grows up, I guess).

Ben says:

Through King Henry's words...I received a deeper understanding of how both my mother and Henry felt as they saw their sons dwindle. When Hal reforms his ways with the promise of honoring his father....he reminds me of how I decided to change my lifestyle upon gaining some insight into my mother's perspective.  

Again and again, I see reminders of the big plans he had for himself...until the world (and especially Covid-19, with its isolation and impact on the restaurant business. pulled the rug out from under his already shaky stance. 

Every time, every night, when we got him to take his meds, I thought to myself: well, we just bought him another 24 hours.  But now that's all gone. I have spent hours on the phone with financial companies, trying to keep his future possible. I defer payments, I cover overdrafts ..and add it to the mounting list of what he "owes" us. 

His room is all ready for him - but he may never come back. Not without a lot of conditions. But I prepare for the best outcome (returned stability), even though I know he might not some back to life this time. Because...motherhood.

And right now, we just have to get him to swallow his medication. 

And change his shirt.

Why Conservatorship? Because it can Salvage – or Save - a Life

Conservators are just the safety net - if you should slip or fall.

Hey, I don’t know Britney Spears. I don’t know her family. I can’t say whether she should be “freed” from her conservatorship prison or not (#freeBritney). Not my business, frankly.

But I can tell you how it works for us – and why .

I can tell you how my son, who just a few mere months ago may have appeared perfectly capable of handling his own affairs, was making some big mistakes-and is now desperately in need of his conservator (me)  to salvage the life he’d so enthusiastically worked to build – before Covid-19 stole his job, his purpose, his sanity.

In the last two days I have:

• Been able to get basic information as to how he is doing in the hospital (not well). Without conservatorship, I’d never have that information – or even know where he is. I couldn’t bring him a couple of T-shirts to change into. I wouldn’t know if my kid is safe.

• Contacted his bank (where he’d opened a secret account) to deposit money to cover his overdraft – for now.

• Kept his Medicare and Medicaid premiums paid.

• Looked into re-applying for social security should he refuse treatment and remain “gravely disabled” – which, right now, he is. Anti-med people? Don’t judge until you see how he is right now. And compare how he was just weeks ago.

• Called the finance company to see if his vehicle lease can be put on hold or something – to avoid the car being repossessed and his credit rating shot.

• Discovered that he’d been covering up a bad financial decision, resulting in lease payments of two expensive cars at once. He’d hidden that from us for awhile, and then it had taken us months to get him to return one of the vehicles. While he’d been employed, he’s covered both payments somehow.

• Paid his credit card minimum (plus a bit) – so this credit rating, too, won’t be shot .

• Contacted unemployment to explain why he can’t file right now – without revealing his illness details (but can’t get anyone on the phone)

This is what conservators do. We catch them when they fall. We let go as much as we can (believe me, the last thing I want is to have to manage my son’s life AT ALL – he is 38 years old – but this illness just totally sucks and steals much of his logic, even when it’s managed by medication) – but if I don’t step in now, my son will not be able to get back the life he created while taking the meds he doesn’t think he needs.

Thank goodness I don’t have to explain anything to his employers. Thank goodness he didn’t exhibit these symptoms while at work, in front of customers. His good reputation is still intact – if he ever agrees to treatment again, and has another chance to get his life back.

Ben is back in the hospital where he was 17 years ago, right after his first breakdown. Ironically, he has the same care team he had then – a social worker and psychiatrist who both remember him, and remember me. This is where I’d first applied for conservatorship of person and estate. This place (called “West Hills” in my book) is filled with flashback scenes for me – visiting Ben, watching him pace the halls and fill notebook after notebook of nonsensical writings; the place where he lauded the value of medication after it helped his brain stop spinning, the pieces of his roiling thoughts falling (mostly) back into place. This is also where he ran from me, after a day in outpatient, because it was time for his meds.

And the flashbacks are all too real again – because right now it’s as if the past 9 years have never happened. Will he come back to life again? Will he work again, drive his hard-earned car again? I don’t know. I don’t even know where he will live, because it won’t be with us if he isn’t agreeing to treatment.

So we live this – once again – one day at a time, and help keep his “managed by treatment” life alive and waiting for him if he ever comes back to us again. For now.

It’s what a good conservator can do. Out of love, pure love. We are the net under the tightrope, should they fall off. We don’t want power. We don’t want to steal their money, or their freedom. We are the salvage team.

Helpless and Heartbroken: Covid-19 Claims Another Victim (My Son's Mental Health)

trying to catch someone before disaster

We finally fell off the tightrope.

Well, my son did. And we were helpless to stop his fall, as we stood there, witness to another mental health victim of Covid-19.

Nine years of being the poster boy for a stable and meaningful life while in treatment for severe schizophrenia, gone in 48 hours. 48 hours. Nine years of careful steps taken toward full-time unemployment, car ownership (of sorts), his own bank account, social activities with friends and family. Nine years of a half-life that we constantly reminded ourselves "was good enough, compared to the alternatives."

Schizophrenia had stolen Ben's life, thrown him into deep muddy waters of chaos and limitations, but he had risen to the surface and we were keeping him afloat by supervising his treatment. Every. Single. Day. He did the rest - earning college credits, working as a restaurant server (a good one, Yelp-worthy), helping out friends - because he had the 4 pillars of stability: treatment, love, purpose, structure.

Gone, all gone. My son is back in the same hospital where he was first treated, 17 years ago, and just as symptomatic. He talks to himself all day. He refuses treatment. He won't talk to us, this child who just one week ago hugged me good morning every day and played on the floor with this little nephew and nieces, who adore him.

His preschool-age nieces and nephew cannot see him like this. They wouldn't recognize their uncle. Sadly, though. it's all too familiar to me, as the pain and grief come rushing back.

No, Ben doesn't have Covid-19 - yet. But the illness caused the economic crisis that cost Ben his job, his purpose, his structure, his livelihood, his sense of self-esteem, his reason to agree to take the meds he thinks he doesn't need.

Unemployment benefits helped - money to at least pay his bills (leased car, credit card, car insurance) and allow some pleasures (take-out food, a new sweatshirt). He was so brave, like a kid consoling himself and saying it doesn't matter when not invited to a birthday party.

But then the benefits were reduced - that $600 per week that has kept most of the unemployed alive since covid pulled the rug out. And Ben's stress escalated - as well as his evident need to control the only thing he still could - refusing to take his medication.

This has happened to many of us, but we can somehow find a way. We dry our tears and turn to logical thought - where can I go? Who can help me? - for at least some answers. But when you have schizophrenia, you don't have the frontal-lobe logic to pull yourself out of a funk. You don't ask for help (because you don't need anyone, or any stupid meds).

My heart hurts. We are in grief. Back to square one, and I am terrified and heartbroken for Ben - and for us.

Getting him out of our home and to the hospital wasn't pretty. The police and EMTs were amazing. And part of me is glad for this "vacation" from his messy room, the greasy stove after he cooks, the cigarette smell that always accompanies him, the daily standoff to get the meds into him.

Yes, I will clean his room, throw out the old empty bottles, the 2 of the 3 ragged couches, the piles of unwearable clothing. I have some control over that, at least. I will do that between my voiceover work, the virtual play I am casting, radio shifts, and helping my daughter with those 3 babies.

But what then? We have 15 days.

15 days. A gift. A burden. A heartbreaking reminder that meds work, but not to cure. Only to stabilize. And my son - all who are like my son - deserve better.

I have no idea what lays ahead. We will move forward, blindly and with love. But the love will lay there, unreturned, while my son lives in his inner world of chaos, back in the place where he was first treated, and a newly-leased car (his pride and joy) sits in our driveway, a reminder of who he used to be - 48 hours ago.

He Came in with It: Book Review

Miriam Feldman's wonderful book will be released tomorrow, and I highly recommend it.

Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere.  I have read many of them, and Miriam's memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.

Plus she made me laugh out loud - something you wouldn't think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your  beloved child.  But you can, and we must. 

Miriam Feldman takes us through  the facts,  the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.

You will fall in love with her son Nick, and grieve the loss of what might have been...and hope for what might be. As I do every day with my son Ben.

I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my "Power of Kinship" conversations. 

Hope you'll read this book!

Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road - also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma - is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family ...and more.

Schizophrenia: Back in the Spotlight at Last?

Oprah's latest book selection, a new memoir, and HBO's series with Mark Ruffalo - is schizophrenia finally going to get the attention it deserves?

Of all the SMIs (Serious Mental Illnesses) in the news lately, schizophrenia always seems to get the short shrift; it’s like the last mental illness in the closet. 

Unless, of course, there’s a horrific incident of violence. Then the questions about sanity begin...and often finger-pointing at schizophrenia. And then, advocates like me have to bring out the statistics to defend our loved ones: 

• No, schizophrenics are not “more violent”

• No, schizophrenia does not mean “split personality”

• No, it’s not the fault of “bad parenting”.

Currently, this brain illness is back in vogue with three exciting spotlights:

Will these open eyes at last?

Will these open eyes at last?

1. Oprah’s book club selection is Hidden Valley Road by Robert Kolker - about a family with 12 children - 6 of whom developed schizophrenia

2. HBO has begun airing the mini-series based on the wonderful (and devastating) Wally Lamb Novel, I Know This Much Is True.

3. A new memoir is to be released next month:, He Came In With It, by Mimi Feldman

And still, the myths - and lack of attention to research - continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley, 

A huge question looms:

"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"

I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or - worse -  worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.

Still, those of us who love someone with this devastating illness, who knew them before it took hold,  can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be - if only we could find a CURE, not just a management tool.

Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.

Let’s hope these three works of art will propel us toward the changes we need to see - and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.

We’d give anything to see their joy again.

Corona Virus Quarantine -Will it Reverse Mental Illness Recovery?

As I write this, I realize it has been quite some time since I've posted.

Why? Because things have been remarkably stable --- or maybe we've just finessed our ability to adjust to Ben's illness. It is what it is. There have been a few blips, to be sure, but with fingers crossed every day we buy another 24 hours of relative normalcy by supervising the treatment my son still doesn't - and may not ever - believe he needs.

Ben's recovery (used in the same frame as an addict defines recovery...an ongoing process, one day at a time, with constant awareness and vigilance) has been framed by the four pillars that hold his life up. (Hold all of us up, actually): Treatment, Purpose, Structure. Love/Community.

And then Covid-19 hit. Ben's job (restaurant server, full-time) disappeared - and along with it, 3 of the 4 pillars have toppled or at least been weakened.

Plus - he doesn't understand why he can't see his nieces and nephews. To keep some semblance of sanity, Ben goes out to see some friends in their homes. Germs, risk, but where do we draw the line? Now I must remain socially distant from my own son in our home - even when he offers a hug.

The tightrope walk continues.

I'd be lying if I said we weren't concerned about Ben's precarious mental health, on top of all the shared concerns that have come with coronavirus and quarantine.

And so we wait, watch, and supervise. Just more than usual.

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!