All posts by Randye Kaye

About Randye Kaye

Female Voice Talent providing voiceover services from narrations to commercials and more. Author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope" and speaks frequently on that topic and others, including Happier Made Simple: Harnessing the Power and Magic of Words. Member of the National Speakers Association, SAG (Screen Actors Guild), AFTRA, Actors Equity Association, and Mensa.

Not-So-Happy Holidays? How to Manage with SMI in the Family

mental illness and family

What if, for families coping with SMI (serious mental illness) in a loved one, the holiday season is “the most difficult time of the year”?

The 3 Moms Discuss – Holidays past, in joy, crisis or grief – and how we currently celebrate what is…the best we can.

Some tips we share:

  • Lower Holiday expectations and Marketing Myths (e.g., perfect holidays)
  • Plan Ahead – even for possible disaster
  • Have a Plan B – and maybe C, D…
  • Include Your Loved One as Much as Possible, Especially if They Can Help
  • Don’t Let the “Unsqueaky Wheels” feel ignored
  • Cherish the Good Moments – Find the Positives
  • Be Willing to Change Traditions as Needed
  • Set and Enforce Limits  – Know Your Boundaries
  • Imagine How it Is for Your Loved One
  • Family Love Matters – You Do Make a Difference

Happy (and Realistic) Holidays to You All!

Want to Share Your Story in a Voice message?

Tell Us Your Story!

Resources:
Look Again Podcast: https://www.bcss.org/lookagain/
Tips from NAMI: https://www.nami.org/Blogs/From-the-CEO/December-2021/The-Most-Difficult-Time-of-The-Year-Mental-Health-During-the-Holidays

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Growing Up Too Fast: When Your Parent has Serious Mental Illness

mental illness and family, Schizophrenia 3 Moms podcast, , ,

Our podcast, Schizophrenia: 3 Moms in the Trenches , continues – and to listeners who asked us, “what about the children raised by parents with SMI?” – we heard you.

This episode (42) is for you!

Guests: Karen Comba, author of The Snipers We Couldn’t See: A Memoir of Growing Up with My Mother’s Schizophrenia

And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ, 


First, your stories.

How has the experience impacted you (Karen writes about life “with footprints on her back”)

How did writing or sharing about it help? Or did it?

How did your experience- and the unpacking of it – inform the work you now do?

What do you most want other children of parents with SZ to know?

What do you want others to know – teachers, practitioners, other adults in a child-of’s life?

How to find happier places for your mind?

Links:
https://christinalord.ca/
https://www.karencomba.com/

Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)

She’s Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)

I’m Not Alone: A Teen’s Guide to Living with a Parent Who Has a Mental Illness, by Michelle D. Sherman

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

Ben Behind His Voices Events and Updates, mental illness and family, mental illness treatment and recovery, resources and reading, , , , , , ,

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.

Happier Made Simple
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:

Continue reading Happier Made Simple: The 7 Core Phrases and Mental Illness in a Loved One →

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

legislative issues in mental illness, mental health and community, mental illness treatment and recovery, resources and reading, Schizophrenia 3 Moms podcast, ,

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

addiction/dual diagnosis, mental illness and family, mental illness in the news, Schizophrenia 3 Moms podcast, , , ,

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

mental illness and family, reviews and interviews, , , , ,

Author Judith R. Smith had me at the first glance 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”

how is Ben doing now?, mental illness and family, mental illness treatment and recovery, schizophrenia, , , , ,

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?

how is Ben doing now?, mental illness and family, mental illness treatment and recovery, , , ,

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

addiction/dual diagnosis, how is Ben doing now?, mental illness and family, mental illness treatment and recovery, , , ,

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

how is Ben doing now?, mental illness and family, mental illness treatment and recovery, , ,

“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 →