Channeling Grief and Anger into Advocacy and Acceptance - guest Jerri Clark

Show 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”

Her son Calvin was 23 when he died from suicide March 18, 2019. 

She is the founder of MOMI–Mothers of the Mentally Ill, and talks with us about her family story, and her path to purpose and redefining her life - and Calvin’s life.

Links:

Pete earley’s post:

http://www.peteearley.com/2019/01/14/a-poignant-pbs-segment-jerri-clark-describes-her-familys-struggle-to-get-help-for-son-with-his-mental-illness/

PBS link: (Brief But Spectacular segment on PBS news hour)

https://www.youtube.com/watch?v=1ozj7TvpDHI 
 

Jerri’s Story:

https://kansasalumnimagazine.org/my-sons-story/
 

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9740212

Eliminating Barriers to Mental Illness Treatment - Treatment Advocacy Center

Show Notes

Lack of involuntary treatment, hospital bed shortages, anosognosia, criminalization of mental illness, public service costs…

Where do we turn when we need to change the system of mental illness treatment? How to break open the barriers? How do we advocate for change?

The Treatment Advocacy Center is a national 501(c)3 nonprofit organization dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness.  

The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder. The Stanley Medical Research Institute is a fully integrated supporting organization to the Treatment Advocacy Center. 

Ex. Dir. Lisa Dailey , Treatment Advocacy Center -

Lisa Dailey is the executive director of the Treatment Advocacy Center, leading an energetic team to improve state and federal civil commitment laws and promote evidence-based policies to positively affect those with severe mental illness. Lisa joined the Treatment Advocacy Center in 2015, bringing many years of nonprofit policy and advocacy experience. Her prior work includes the representation of refugees seeking asylum in the United States and many years of experience as a litigator in the areas of human rights and civil liberties.

1. Lisa’s personal story about why she advocates for people with serious mental illness

2. What are the main issues facing those with serious mental illness and their families? -

3. Why was the Treatment Advocacy Center (TAC) started? How has it evolved?

4. An inside glimpse of Dr. E. Fuller Torrey, TAC’s founder, author ofSurviving Schizophrenia

5. What has TAC had the most success with? (Thank you for your advocacy to ensure people like our sons could get COVID vaccines.) What has been hardest?

6. Tell us about TAC’s Grading the States. We’re from Connecticut, Minnesota and Washington.

7. What is TAC’s relationship with NAMI?

8. Recently hired a parent advocate, Kathy Day. What will she be doing that is new to TAC?

Links:

Twitter: @lisadaileyTAC

 Sign up for Research Weekly, new legislative Advocacy newsletter, more

https://www.treatmentadvocacycenter.org/
 

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9688394

Purpose and Community on Recovery Road - Clubhouse Int’l - Episode 30

Show Notes

Guest Joel Corcoran, Executive Director of Clubhouse International

WE are registered on Podchaser: 1JYHu8EZSiGN2dxr1Oz7

Clubhouse International:

A Clubhouse is an evidence-based-practice founded on the belief that even the most disabled can sufficiently recover and improve their lives with the help of a supportive community. The Clubhouse model provides pathways to meaningful social inclusion, work and wellbeing. First developed in New York in 1948 by a small group of former psychiatric hospital patients, the model has gained international recognition, scaling to more than 350 Clubhouses operating in 32 countries and growing.

“We help start and grow Clubhouses globally where people with mental illness can go to get their lives back.

There simply are not enough resources today for everyone with a mental illness who needs help. It’s a crisis situation and the numbers are growing.

Clubhouses powerfully demonstrate that people with mental illness can and do lead productive, happy lives. Each Clubhouse we open reaches +/- 500  

1. How does the Clubhouse program fit into the larger mental health system?

2. Sometimes the Clubhouse program is referred to as a peer led program. Is that accurate?

3. What kind of things does a Clubhouse do for someone living with mental illness?

4. What can a person joining a Clubhouse for the first time expect? 

5. Who is eligible for Clubhouse membership and what is expected of those who belong?

6. What is the long term vision of Clubhouse International?

7. How do Clubhouses get started? 

Links:

https://clubhouse-intl.org/

Mindy talks about efforts to create a clubhouse in her state:
https://my.nicheacademy.com/rcladult/course/59353/lesson/169660

Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9573024

Dual Diagnosis: Double the Challenge - Episode 29

Show Notes

Getting personal on this episode about the effects of addiction (drugs or alcohol) on the family - and the double challenge when it co-occurs with SMI (Serios Mental Illness) - in our sons’ cases: schizophrenia.

Are we ever really out of the woods? Are our loved ones?

What can we do? What must we let go of?

The 3 moms get personal here. Solutions? We wish we had some - but we do share ideas of actions and attitude. 

Maybe you’ll hear your story inside of ours. You are not alone.

-----------

What is dual diagnosis? (Co-occuring disorder)

What works? What doesn’t? - 

• “Harm reduction” treatment?

• 12-step programs?

Why is it so hard?

• Similar symptoms - delayed SMI diagnosisGrief

• Grief, Lost Trust, lost time

• Relapse disappointment

• Stronger drugs now 

What can the family do?

• “Trust, but verify” - blood tests, Urine tests

• Set your boundaries/rewards/consequences 

• Do what works - even if your break the rules you thought you knew

• Balance of letting go/stepping in

• Support a healthier community and purposeful activity for our loved ones

• Get support or help for yourself (the family) - AlAnon? Therapy?

• “Know that you’re dealing with something unknowable, and do the best you can” (Mimi)

• Look for Integrated Care for your loved one - treats both diagnoses together

• Keep watching carefully

• Be aware (and providers be aware) that what looks like “just substance abuse” may indeed be early symptoms of SMI - alert the family

Links:

Dr. Laitman - listen to our episode 18, June 2021

Samhsa has resources: 1-800-662-HELP

https://www.samhsa.gov/families

NAMI:

www.nami.org

https://nami.org/About-Mental-Illness/Common-with-Mental-Illness/Substance-Use-Disorders

Cedar Ridge: https://www.meridianprograms.com/program/cedar-ridge-mens-residential-stillwater-mn/

NAMI Family-to-Family

https://nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family

Book: Beautiful Boy

https://www.amazon.com/Beautiful-Boy-Fathers-Journey-Addiction/dp/0547203888

Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9542600

Not Like the Others: Katie's Story of Mental Illness and Recovery

Show Notes

Guest: Katie Sanford , blogger, "Not Like the Others"

“You raise expectations, and raised expectations are what people need.” - Mindy

From Katie's blog:

"Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. "

Katie Sanford is a blogger and advocate living with schizoaffective disorder who uses her insights and experiences to  promote a deeper understanding of schizophrenia-spectrum disorders. She details her experiences on her blog, Not Like The Others, and is also an ambassador for NAMI Chicago involved with Crisis Intervention Training. She has been a guest speaker for college classes, webinars, and podcasts, and her story has been featured on platforms like Women's Health Online.

Questions:

Tell us Your Story!

How does schizoaffective disorder impact you at work?

How does it impact your relationships?

Is an outcome like yours possible for everyone?

And why do you think it's important for people to hear from individuals with lived experience?

What role has family played for you in your recovery? - support, treatment, early diagnosis

Advice for practitioners? - Believe your  patients more

From article she wrote for The Mighty: 

“Receiving a mental health diagnosis isn’t the end of your life, it’s just the beginning of a new chapter. But it may be daunting or terrifying. When I was diagnosed with schizoaffective disorder, I had no idea what my future would look like...While my mind went spinning into denial, fear and acceptance that life as I knew it was over, a part of me clung to hope and refused to give up.

Hope wasn’t enough to solve all my problems.”

Links:

https://katiesanford.net/wp/

https://themighty.com/

Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9456123

I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment

Show Notes

If you care for someone with a diagnosed serious mental illness (SMI) , you know that it isn’t easy to help them begin, or continue, treatment.

You hear “I’m not sick! I don’t need help!”

That phrase inspired our guest to find a way, write a book, and create a movement.

Dr. Xavier Amador is a world-renowned clinical psychologist & forensic expert, and a Family caregiver of relatives with schizophrenia and bipolar. He founded NAMI’s Scientific Council, helped to launch Family-to-Family, Peer-to-Peer  & In Our Own Voices, and wrote the book I AM NOT SICK I Don’t Need Help! 

We talk about:

• Dr. Amador’s family story: his brother Henry, and his son, with Schizophrenia

• What do we do when our loved one says I am not sick, I don't need help?

• Listening: without judgment, and with respect.

• Anosognosia, and how to approach someone who has it

• The Henry Amador Center on Anosognosia  

• The power of your relationship

• Changes - and changes needed - in the mental health system

• Takeaways from the input from families and also people with mental illness?

• Diffusing Anger

• 3 A’s: Apologize, Acknowledge, Agree (to disagree)

• Crisis Communication v. long-term communication

• The LEAP method (listen, Empathise, Agree, Partner) and how families - and law enforcement - can be trained

• Role-play: Addressing Covid Vaccine reluctance with relative with SMI 

• LAI (long-acting injectables) vs. pills every day

Quotes:

“You’re not going to make a delusion worse by listening to it and letting your loved one know that you’ve heard him and that you understand his anger, you understand his fear.” - Dr. Amador

My brother never believed he was mentally ill...but he stayed in treatment for the rest of his life” - Dr. Amador

Links:

Henry Amador Center on Anosognosia: https://hacenter.org/home

Book: I Am Not Sick! I Don’t Need Help: 20th Anniversary Edition: https://www.amazon.com/gp/product/0985206705/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0

Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9415415

Better Mental Illness Outcomes through Community Collaboration: CIT

Show Notes

“Collaborative partnerships between law enforcement, mental health service providers, advocates, family members, and people with lived experience.” - Amy Watson

Sound good? That’s the foundation of the CIT Model.

“I could treat people like human beings” - Amy Watson

Police Activity is very much in the news these days, and response to mental health crises is often left in their hands.

Each of us has had experience with first responders, some trained in crisis intervention and some not. CIT Training is at least part of why our sons are alive (and not incarcerated) today.

Our guest today is Amy Watson, President of CIT (Crisis Intervention Team) International, a leader in promoting safe and humane responses to those experiencing a mental health crisis. She is also a professor at Helen Bader School of Social Welfare at University of Wisconsin-Milwaukee.

 CIT Basic Goals: 

• Improve Officer and Consumer Safety 

• Redirect Individuals with Mental Illness from the Judicial System to the Health Care System

We Talk About:

1. What is the CIT(Crisis Intervention Team)  program model? - and why do you personally do this work? -

2.  What does the research tell us about CIT?

3. What is CIT Training - what are the goals? Why the need?

4. What’s the cost? Who pays?

5. What’s the cost of NOT getting the training?

6. What do officers say who have had the training? Do they get pushback from other police officers?

7. How can a family member advocate for getting CIT training locally?

Links:

https://www.citinternational.org/

What is CIT?

https://vimeo.com/533695447

HBO Documentary “Ernie and Joe” - https://www.hbo.com/documentaries/ernie-and-joe

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9288516

Schizophrenia and the Family: Is There Hope Beyond Hidden Valley Road?

Show Notes

To end our first season with episode 25, we present the interview that started it all: Mimi and Randye interview Bob Kolker, and are joined by fellow activist/mom Laura Pogliano.

A conversation about #Schizophrenia and the Family: Is There Hope Beyond #HiddenValleyRoad? with Robert Kolker, Miriam Feldman, Randye Kaye, and Laura Pogliano. 
Kolker is a journalist and nonfiction author whose first book Lost Girls was a New York Times best-seller and was recently adapted for a Netflix film. This  book is Hidden Valley Road, an Oprah's Book Club selection and an instant #1 New YorkTimes best-seller about one family's struggle with mental illness.
Randye Kaye is author of Ben Behind His Voices, and creator of The Power of Kinship programs. She is also a noted voice talent, speaker and actor.
Miriam Feldman is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and will be out on July 21st.
Laura Pogliano has been featured frequently in USA Today as mother & advocate for her late son Zaccaria. She is now the Maryland State Chapter Lead for SARDAA and focuses on family support and the reclassification of schizophrenia to Neurology. She is also on the Board of SARDAA.

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.

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9229487

From Politics to Providers: Advocating for System Change in Serious Mental Illness

Show Notes

“Mom, the voices are telling me I need to kill you right now.” - 

What can a parent do after hearing that from a child? 

How can we educate mental health providers so they really “get” what it’s like to have a serious mental illness, or to be a family   member of  a loved one who has one?

Ever wonder what you can do to make the mental  system better for others, even if you can’t help your own family member as much as you wish you could?

This episode is about those steps, to help make changes and fix what is so broken about the system. 

Welcome Leslie Carpenter: Mom. and….

Experienced Serious Brain Disorders Advocate working to fix the broken treatment system locally, in Iowa and nationally. Effective speaker for advocacy. Recently retired early from a rewarding 34 year career in physical therapy and management, to have more time and energy to focus on improving the quality of treatment for 11.9 million people with serious brain disorders in our country.

Keep spreading the word. Also join our facebook page @schizophrenia3moms

• Leslie’s family story with schizoaffective disorder

• Political Advocacy in Iowa - Meeting with Presidential Candidates and more

• NAMI Provider Training - how it works, and expanding it nationally

• solutions to fixing the broken, siloed treatment system for people living with serious brain illnesses

• anti-stigma campaigns

• The dream of creating psychiatric assisted living campuses - long-term housing solutions

• “Ripples Of Hope” advocacy talks 

LINKS: 

Advocacy talk to the City of Iowa City via Zoom this past spring, after she and her husband received an award from the Iowa City Human Rights Commission: 

 https://www.youtube.com/watch?v=b0aO1TbwED0 

NAMI Provider Ed:

https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Provider 

Lwentworth@nami.org
 

NAMI Iowa video on Provider Ed:

https://namiiowa.org/provider/ 
 

Pete Earley:

http://www.peteearley.com/ 

Crazy: A Father's Search Through America's Mental Health Madness
 

DJ Jaffe obituary: 

https://www.nytimes.com/2020/09/16/nyregion/dj-jaffe-dead.html 

His book, Insane Consequences
 

Fellowship Place: New Haven CT

https://fellowshipplace.org/ 

International Clubhouse

https://clubhouse-intl.org/resources/quality-standards/

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9101018

Episode 23- You Are not Alone - Stories of Family emotional Journey with SZ

Show Notes

Are you dealing with SZ in a loved one? Feeling confused? Scared? Angry? Overwhelmed?

You are not alone. We've been there...and how.

There are stages in the emotional journeys of families dealing with Schizophrenia in a loved one. Mimi, Mindy and Randye are now often at the "advocacy/Acceptance" stage - but not always.
In excerpts from our books, and quotes from listeners, we talk about the events and feelings in the earlier stages of the journey. 
From Crisis, to Coping, and Advocacy...and the carousel keeps spinning.
And yes there is hope too.
Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/9020632

From Schizophrenia / Addiction, through Treatment, to Success: Carson's Story

Show Notes

Episode 22- From Schizophrenia and Pot Addiction, through Treatment, to Success: Carson's Story

Today we  talk with  Carson S. , who has an inspiring story to tell, from schizophrenia/addiction to sobriety/recovery success.  We talk about his life….what it used to be like, what his challenges have been (addiction/intrusive thoughts/SMI) , and how he is doing now…..and what advice he might give to others who need to have hope.

Mimi and I met Carson last week at a gathering at Rob Laitman’s home for his patients and families (see episode 18)  

• What happened when you were using marijuana?

• Did you realize that was an abnormal response?

• As your symptoms progressed, what did you think was happening?  Did you even suspect mental illness?

• Did your parents or family know what was going on?  What about teachers or friends?  Did they suspect anything?

• When was it that you finally realized you had a problem?

• Did you ever “hear voices”? If you did, could you tell they weren’t real?

• What other symptoms did you recognize?

• Were you afraid of the medication? Afraid of the doctors?

• Since we know you finally ended up on clozapine, you must have had a rough journey on previous medications?  Tell us about that.

• How was clozapine different?

• When did you notice improvement?  Were there specific things that changed or were different?

• You spent a year at Viewpoint Dual Recovery Center - what was that like?

• Have you had any challenges with wanting to use marijuana?

• What’s your life like today?

• It is very difficult to recover from the dual diagnosis of BOTH addiction and serious mental illness. 

• But as of today you seem to be managing this.  How did you do it? 

• What do you want other families to know?

Who Are the 3 Moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8982002

Tools of Hope: Family Empowerment and Care Coordination in Mental Illness

Show Notes

Today is about solutions -( we’ve done a lot of episodes about problems) - and at the end we’ll share some free resources to help you if someone in your family has schizophrenia - 

Guest: Michael Mackniak, JD
Free resources:
https://myfenow.com/3moms/ 

https://myfenow.com/tools-of-hope/

Other Links:

https://vip.myfenow.com/

https://michaelmackniak.com/

http://guardian-ct.org/

https://www.facebook.com/groups/FamilyEmpowermentNOW/

Mike’s book : Saving Melissa

Michael Mackniak specializes in coaching families and fiduciaries, to help them with the  ability to get the comprehensive services for their loved ones, friends or clients.

He wrote "Saving Melissa: The Seven 7C's for Curing the Mental Health System" . It has insight and strategies into the process of creating an interrelated service system in their community.  

 He also leads Guardian Ad Litem Services, better known as Melissa’s Project, which is a copyrighted program based on Care Coordination.

We Talk About:

What are the  7 c’s, and the obstacles you face when trying to implement them ?

(Core Concepts you have found to be most successful in providing effective and efficient services in mental health treatment?)     

1. Client Centered, 

2. Communicative, 

3. Collaborative, 

4. Consistent,   

5. Comprehensive, 

6. Committed, 

7. Coordinated

What are some of the common issues that you face when implementing your program

           People don’t want to be leaders

           HIPAA myths and misconceptions

           Reluctance to change (systemically)

           Institutional memory

           “Who do you think you are?” 

Why is Family Empowerment so important? Are there Core concepts there, too? And challenges?  

Getting Tools of Hope -  and More Resources   

QUOTES:

“I really hate seeing broken systems...and there is nothing more inefficient than our mental health systems.” - Michael  

“I firmly believe the systems cannot change and will not work without the assistance of the families. Without family help the rate of success is vastly diminished.” - Michael 

“The mental illness that you’re going through cannot define your family, and it cannot define you and who you are as a person.” - Michael 

 Who Are the 3 Moms?

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)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8864402

Schizophrenia in Entertainment - Film, TV, Novels: Accurate or Insulting?

Show Notes

Catch-up chat: re future episodes; people who call us “overbearing moms” and blame the family; patients’ “rights” vs. family caring;   

Themes: What does entertainment media get wrong?

• Lack of named diagnosis - UnReal, Girl Interrupted

• Inaccurate/unresearched portrayal of SZ - Words on Bathroom Walls

• Madness Always Linked to Genius - The Soloist, Beautiful Mind, Shine, Proof

• Mistrusting Medication and Treatment - Beautiful Mind

• Lack of Diversity - often male/white - no cultural differences in attitudes/traditions represented

• Tendency Toward Violence - even serial killers - The Fisher King, Donnie Darko, The Joker

• Hallucinations as mainly visual/romanticized - Beautiful Mind, Words on Bathroom Walls

• Long/Lifetime Hospital stays - Love Actually

• Blaming Family Dynamics/ Bad childhood as only “cause”

• Treatable with Therapy alone - meds are bad - One Flew Over Cuckoo’s Nest

• Romantic Love/ A Good Job can “cure” you - Words on Bathroom Walls 

• SZ    Films “based on a true story” whitewashed for entertainment value - 

• Those with SZ are “possessed” by supernatural

• Too Much Hope? Recovery? - Benny & Joon

Some things they get right:

• Employment can be an important element of recovery - The Joker

• Medication as often vital part of Treatment  - The Joker, Silver Linings Playbook

• The mental health system needs so much work - I Know This Much is True, The Joker

• Family Emotional Reactions/Burdens - Silver Lining Playbook, I Know This Much Is True,

• Other movies mentioned: The Snake Pit 

Links: 

https://thecinemaholic.com/schizophrenia-movies/ 

Next week’s guest:

Michael Mackniak, JD  , Guardian Ad-Litem Services, Melissa’s Project

Helping Families Control the Chaos of Mental Illness at Home and at Work.

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8826122

Siblings: My Brother or Sister has Schizophrenia - What About Me?

Show Notes

In this episode, we talk with our own daughters about the lived experience of the sibling when schizophrenia hits the family. The emotional toll on this group of family members is often swept aside in the wake of the crises involved in SMI. We give them a chance to speak.  

Guests: Our Daughters - Angela, Lucy and Ali

PAST:

1. What was it like for you growing up, as your sibling’s illness began?

2. When did you start suspecting something was wrong? 

3. Did you second guess any things your parents were doing for him?

4. Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)

PRESENT:

1. What is hardest for you about your brother's illness?

2. How do your friends feel about him? How do they best support you?

3. Has your life changed in any positive ways because of your brother?

4. Do you see yourself as a mental health advocate? If so, how?

5. What is it like now? Where are you on the “graph of emotions?

6. Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)

7. Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)

8. Do you feel guilty that he got sick instead of you?? (Laura Pogliano)

FUTURE: 

1. What are your major worries about when we parents aren't around to be front-line advocates for your brother? 

2. What do you see yourself being able to do and what will you need help with? 

3. What help do you hope will be in place? 

Final question: What do you most want other relative groups - particularly parents - to know about your experience as a sibling of someone with SZ? How can we best be of help to you? 

Links for mentions:

NAMI Family-to-Family

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8674528

Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman

Show Notes

In this episode, we talk meds with an MD. Specifically: Clozapine. Many of us are told that it’s the “last resort” medication, “when nothing else works”. Is that really true?

Guest :  Robert S Laitman, MD, is an internal medicine physician at Bronx Westchester Medical Group in New York. Over the last 10 years, he has developed a practice taking care of people with psychotic disorders after his son, Daniel, received a diagnosis of schizophrenia in 2006.

Dr Laitman, his family, and his colleague authored the book, "Clozapine: Meaningful Recovery from Schizophrenia."

We talk about:

1.       Why do you say clozapine should be the drug used first? Why isn’t it? 

2.       Why is clozapine used more in other countries compared to the United States? Why isn’t it marketed more here? 

3.       Why does clozapine take so long to fully kick in (a year in some cases) compared to other antipsychotics? Your son continues to improve, even after being on it for 9 years. In what ways does he improve?  

4.    How does clozapine can benefit patients, besides addressing the classic symptoms of schizophrenia, e.g., suicidality, illicit drug use, smoking. 

5.       Mitigating predictable side effects - e.g., weight gain, salivation, sedation.  (Med therapy management and how it works) 

6.      We need Engagement, Access, Treatment, Support 

7. What can families do, to advocate for their loved ones to get best treatment? What should practitioners know, and do?  What can families do? Educate yourself about clozapine and talk with your loved one’s psychiatrist. 

Links and explanations:

TeamDanielRunningForRecovery.org

Clozapine facebook page

Team Daniel facebook page

SZ 3 Moms Facebook page

Get on the mailing list:

rslaitman@aol.com

Dr. Laitman’s Book:

https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X

New finger-prick Point-of-service test

Psychiatrists were once referred to as Alienists - Psych. Today article

Deborah Levy was director of the Psychology Research Laboratory at McLean Hospital and an associate professor of psychology in the Department of Psychiatry at Harvard Medical School,

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8634393

What Schizophrenia Steals - Emotions Deeper in the Trenches

Show Notes

A “Just Us 3 Moms, Digging Deeper” Episode.

Tonight we just talk about our boys - and what we’ve lost, what they have lost.

Feeling even more alone than ever? Not only is your family member diagnosed with schizophrenia, but you have your own reactions and emotions to deal with - what is “normal”? What do other families feel? What are the stages of these reactions? What can be done?  

We Three Moms have been there...are there...and we open up to share the raw truth with you. This podcast strives to explore issues, open minds, offer solutions...but we also promise to tell our truths.  This is one of those episodes.

We touch on:

Anger, Grief, Helplessness, Fear, Guilt Resentment, Exhaustion - all normal feelings 

What Siblings Lose

Family events - Changes in Routine (like travel) - possible with schizophrenia? 

Grief - and how the process can differ (and repeat) with Schizophrenia in a loved one

The land of “What might have been…” sorrow - what have we lost? 

The Burden Families Feel

When the Life Behind the eyes is gone

Bravery of our sons - They Try so Hard

Parental Fantasies, Expectations - and the Truth

Vulnerability of Loving

Getting Back to Joy in Real Life: Gratitude, Art, Advocacy, Feel but Don’t Wallow, Reality

Quotes:

“I see this damage to all my children - and that’s the thing I think that’s most painful” - Mimi

“There’s no life behind his eyes. What happened?” - Randye’s daughter

“You can’t reason with mental illness.” - NAMI saying

“What makes schizophrenia especially cruel is: it’s just such a shock” - Mindy

“In a sense, you have to let go of the idea of a future, and that is a particularly excruciating thing to have to do” - Mimi

“If you’re lost in crisis...get support, get education...reach out...don’t hide in the closet. You’re not alone.” - Randye 

Links:

Randye and Ali on More than My Diagnosis.com

https://www.otsukapatiented.com/mental-health/community-stories

Miriam Feldman Facebook “analogue Life”

https://www.facebook.com/miriamfeldmanwriter/

Miriam and Nick on ABC News:

https://abcnews.go.com/US/mom-struggled-accept-sons-schizophrenia-talks-crisis-services/story?id=77349357

Mindy’s Talk for Mental Health Association of San Mateo County:

https://www.youtube.com/watch?v=y3WrpHWFlF0

Randye’s talk for Mental Health Association of San Mateo County:

https://www.youtube.com/watch?v=qFirkQBdQZk

    Who are the 3 moms?

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“)

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8514935

AfterWords - Stopping the Revolving Door - Assisted Outpatient Treatment

Show Notes

Sometimes the best parts of the conversation happen after we press "stop" - so today we captured what happened after that. Guest is Eric Smith, a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT).

AfterWords:

Why does Eric advocate for AOT?

What about AOT for someone who isn’t as “stellar” as Eric?

What’s a real human right? To make your own decision to refuse treatment while your brain is ill, or to receive “ordered” treatment when you’re  not yet aware that you need it?

Treatment, Structure. Purpose, Love - 4 elements of success.

“The least amount of harm and the most amount of good”

When families refuse to be the caretakers -what team can take over if we fight for it?

The pitfalls of the child-parent dynamic

From Serious mental Illness to   Thriving in reality

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8460291

Stopping the Revolving Door - Eric's Powerful AOT Success Story

Show Notes

Guest : Eric Smith is a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT). His story has been told in the documentary Stopping the Revolving Door – A Civil Approach to Treating Severe Mental Illness. He has been written about inBedlam, authored by Peabody Award-winning Kenneth Paul Rosenberg, MD.

Court-Ordered Treatment for Serious Mental Illness saves lives and families. Eric Smith tells his story, and why he advocates for AOT (Assisted Outpatient Treatment) 

• Update: Mimi and Nick on ABC news 

• Issue: Miriam Delphin-Rittmon, Biden's nominee for Asst Secretary for Mental Health and Substance Abuse from Connecticut, is not an advocate for AOT. Connecticut is one of three states without AOT.

• Story: A big step - to admit to “wrestling with symptoms”  

And, with our guest,

• What is AOT (Assisted Outpatient Treatmen) and how can it help with SMI (Serious Mental Illness)?

We ask Eric :

• Please tell us a bit about your story and how AOT played into it.

• As mothers, we're happy to see that your parents have participated with you to help educate professionals. If they were here today, what would they say in support of AOT? 

• Did you appreciate their role in you receiving AOT care at the time? If not, how did you heal over time?

• Which people benefit from AOT and why do you include yourself in that group?

• Please describe what AOT services you received? What helped you the most?

• Where do you believe you'd be now if you hadn't benefited from it?

• Do you see any future hope that patient's rights groups will come to see AOT as targeted to just the very severely ill people and that it helps them? Have you received blow back from them?

Quotes:

“I was difficult, I was rude...I was basically “fired” (as a patient) for all the things I needed treatment  for.” - Eric

“The AOT Team recognized that I was being held hostage by my own mind. And they freed me from all of that through a combined effort: psychiatry, social work, a nurse, even an attorney - and a civil court order. ” - Eric Smith

“The most involuntary and coercive and forceful thing I have ever experienced is: my own untreated, undertreated mind”. - Eric

“Fifteen years of failed medication trial and error. Fifteen years of my parents trying to get me the help I needed. Everything had failed.,,AOT is a lifeline, a miracle.”   - Eric

“I was too sick to engage in voluntary care,  and that’s why I’m advocating for something in addition to what you’re advocating for. You’re right...but I’m also right.” - Eric”

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8459912

NAMI’s Family to Family Program - Mental Illness Education, Support, Strategies and More

Show Notes

Have you ever wished there were a way to learn about your loved one’s mental illness, so that you can stop grasping at straws, making things worse, being always in the dark about what to do and how to cope?

This DOES exist - and it’s free.  It’s called Family-to-Family, offered by NAMI (The National Alliance on Mental Illness) - and they have tons of other resources as well. 

https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family 

This FREE course is offered by the National Alliance on Mental Illness (NAMI) called Family-to-Family. Randye has also taught it countless times, and is one of the state trainers for Connecticut.  Mimi and Mindy were forever changed (in a good way) by taking it.

Our guest: Suzanne Robinson, Director, National Education Programs, NAMI - will tell us all about it.

We talk about:

What is NAMI? National Alliance on Mental Illness - how does it help people, families and professionals  dealing with mental illness?

Our stories: some increase in awareness of symptoms? Maybe.

Randye’s son Ben: “When I’m not on my meds, I wrestle with symptoms” - First time ever saying that - did he mean it?

Mimi and her son Nick (!)  on ABC news talking about his schizophrenia.

Suzanne’s story as a sibling   and child of someone with mental illness. We aren’t all parents.

What makes NAMI programs different?  -  Peer education approach (lived experience)

What is F2F? (Family-to-Family)? How did it begin? What is covered? How many have been helped?

The rapport   and support that happens and grows in the course of the 8 weeks. 

What changed with the new version (6th edition) released in early 2020

Is it now available online? - COVID and pivot to programs offered online

What other resources does NAMI have for families and people experiencing mental health?

Quotes:

“The lightbulbs went off for me in Family-to-Family...that moment when I really learned ‘oh my god, it’s not my son’s fault’ was so powerful.” - Randye 

“My golden nugget was to learn what (my son) Jim still could do. “ - Mindy

 “Some people want to talk about how they feel...others are like: give me the information so I can take action. Teach me something so that I have the background, the understanding and the growing empathy.” - Suzanne

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8343166

Let’s Talk about the Law - Mental Illness and Legal Matters, Part Two

Show Notes

Guest: Judge Lisa Wexler, Connecticut

Many of our listeners have shared frustrations with the law, confusion about the process, and want to know more. Today we get the story from the other side of the bench.

 This is Part Two of our conversation with Judge Lisa Wexler (https://www.lisawexler.com/ ). Judge Lisa has been a probate judge in Connecticut since 2013. She is a graduate of Johns Hopkins University and NYU School of Law. She has practiced law in NY and CT for many years and is also a professional mediator . Lisa is also the creator of The Lisa Wexler Show, a daily talk radio show airing on WICC-600 in suburban CT and metro NY. 

We Talk About: Part Two: 

CT one of three US states that doesn’t have Assisted Outpatient Treatment (AOT). Do you wish it did?

Need for “acute event” to be admitted to hospital. Can we intervene before it gets to that point? 

Civil Commitment (Minnesota and some other states)

How hard is it to make decisions for those with Schizophrenia and their families? Do you ever wish for more power, or less? 

How much does/should the average Judge know about mental illness before making decisions like these? 

What state laws would you change if you could?  

Issues of Dangerousness, Gun Control , Access 

“Right of Notice” vs “Right to Appear” re hearings for families

Probable Cause hearings 

CIT (Crisis Intervention Training) for Police 

For the 3 moms: What would you most want judges to know?

Judge Lisa: What would you most want family members to know ?

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8290653