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:

 

Channeling Grief and Anger into Advocacy and Acceptance

Mimi Feldman, Mindy Greiling and I have been co-hosting our podcast, Schizophrenia: Three Moms in the Trenches, for almost a year now. Our 32nd episode this week has garnered more YouTube viewings in its first two days than any other so far, and guest Jerri Clark, our ” Fourth Mom in the Trenches” for this episode, is the reason.

If you want to know more, please subscribe to the podcast on itunes or wherever you get your podcasts, and/or on YouTube.  Our facebook page is @schizophrenia3moms.

Here are some of the notes:

What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?

What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.

What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it – although the refusal itself is a symptom of his illness?

She says: 

 “I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”

Difficult: Mothering Challenging Adult Children through Conflict and Change, Book Review

Author Judith R. Smith had me at the first glace of the callout quotes:

“You can divorce a difficult spouse. It’s much harder to give up on a difficult child.”

and

“When a child is diagnosed with serious mental illness, they do not die – but they are changed.”

How do we continue mothering, when our children are long past the age when we thought we’d be graduating from the phase of hands-on support? What do we do, what do we feel, what do we fear when our stepping aside could spark poverty, homelessness, even violence for our children?

In this thorough, empathetic account of this important previously-swept-aside issue, Judith R. Smith combines eight years of research and grimly honest stories from mothers  of children who have SMI (serious mental illness), addiction, and other issues we never expected to face in our kids.

We learn about the problems presented by not only our own family challenges, but also cultural expectations about motherhood and system failures of support. We feel less alone when hearing the stories and reading the facts. Then, Smith takes us through steps including attitude change, getting support, practicing self-care, and ways to stay safe and possibly even help our grown, difficult, children.

There has never been a book like this. If you’re a mother still inside the journey no one wants to speak about, get this book. You’ll be glad you did.

Available February 2022, Rowman and Littlefield

 

 

Schizophrenia: Nearly Everyone is a “Long-Hauler”

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.

We Need a Cure

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?

randye kaye on hopeThe 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.

Continue reading “Mom, My Future Seems So Bleak”: Feeling the Heartbreak

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.

flower blooms in cement
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.

Continue reading Hope for “Normal” Days Springs Eternal

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.
CJ Hanson, Mental Health/Brain Illness Advocate

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.

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.

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

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

The Me You Can't See Photo
The Me You Can’t See

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

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

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

Thank you.

And yet. 

Does it go far enough? 

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

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

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

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

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

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

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 loved this movie!

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
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
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