Ask the Moms: We Answer Listener Questions in Our First Live Episode!

Show Notes

We invited listeners to come on board for this episode, for some Q and A, and wow did they come through!

This is one of our most powerful shows ever, thanks to you. Yes, if you want, we will do this again.

We discuss:
how we wrote our books
How to help the Treatment team include us - even if they are reluctant (HIPAA, confidentiality, etc.)
Planning for when we are no longer able to help
The value of our anger, the value of our love
Lack of training for many practitioners re SMI (serious mental illness)
Conservatorship/Guardianship
SSI/SSDI
Positive life lessons for us in all this...
and much more.

Want us to cover a topic? Facebook page @Schizophrenia3Moms
Twitter @SZ3MomsTrenches

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, Happier Made Simple)

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/1604296/10273262

The Value of Community: Peer Mental Health and Painted Brain

Show Notes

If you have a mental illness, how does isolation add to the challenges you face?

Guest (and self-described schizophrenic) David "Eli" Israelian talks about his story, and two incredible projects:
Painted Brain | Putting Brains To Work! We're building community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise. - 

Painted Brain creates lasting community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise.

and Peer Mental Health:
Community wellness meetings 

Social and Emotional Support Groups 

Faith- based support groups

Workforce development

 Stipend & job opportunities

links:
https://www.facebook.com/PeerMentalHealth/
https://www.peermentalhealth.com/
https://paintedbrain.org/ 

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/10227024

Money and Mental Illness: The Effect of Finances on Family Mental Health

Show Notes

We talk a lot about the emotional stress and shock of caring for someone with SMI, but what about the financial shock? Is debt an issue? How does your loved one handle money? How do you get services? Do the wealthy have better support? Do families have to go broke to have support, and what is the additional emotional effect of money on the family mental health?

Savannah Price, in the UK, is doing research on this - and today we turn the tables and let her interview us. 

Savannah is building a company to improve the mental and financial resilience of young people with mental health problems by targeting the vicious cycle between money management and poor mental health.

We talk about:

• financial shocks

•  the vicious cycle between poor mental health and dysregulated spending

•  financial literacy

• Family responsibility

• And look at another, international, health system of “care”

About Savannah:

Savannah is originally from South Africa, but moved to the UK for university. She started her career as a geologist before launching an Equestrian competition and sales business in Ireland. She most recently completed her MBA at the University of Oxford and is starting a company in Mental Health. 

She has a strong history of mental illness and disability in her family - she has a sister with schizophrenia, another with bipolar and her youngest sister has autism with significant learning disabilities.

Given her lived experience, she is currently doing research into how money and mental health are interrelated, and how having serious mental health problems impacts families financially and emotionally.

Not only do many mental health problems result in financial strain for young people and their families, but ultimately the breakdown of supporting relationships over time. 

To address these problems, we are working to develop personal “relapse signatures” for young people who suffer from dysregulated financial behaviours due to mental health problems such as personality disorders, bipolar, psychosis, depression, anxiety, gambling, substance use disorders and ADHD. 

We do this by overlaying spending patterns with other data you can get from a mobile phone, to track symptoms of poor mental health. 

This then allows us to tailor products and services according to their goals/needs, and improve wellbeing, both financial and otherwise. 

What it can also do, is give their loved ones insight into our users' mental and financial state in real-time, to flag risk and possibly intervene before there is a crisis - all the while advocating for agency and empowerment. Our mission is to blaze the trail for preventative healthcare through behavioural finance.

If anyone wants to learn more or to get involved with the research and product design - they are more than welcome to reach me on sav@price.mba, or my LinkedIn.

Want us to cover a topic? Facebook page @Schizophrenia3Moms

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, Happier Made Simple)

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/1604296/10131439

Advocating for the Best Available SMI Care: guest, Rachel Streiff

Show Notes

Rachel Streiff: Mental Health Advocate, Mentor to SMI Caregivers, Data analyst for Team Daniel Running for Recovery from mental illness, (Dr. Robert Laitman’s organization),  chemical and biomedical engineer with a legacy six sigma black belt certification - Mother of our guest in episode 22, who is currently a full-time college student.

If you enjoyed her son's story in Episode 22,  hear his Mom's side of the advocacy and how she insisted on the best available care - a standard some practitioners do not follow. A very powerful hour.

Links:

rachel.streiff@yahoo.com

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

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”, Happier Made Simple)

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/1604296/10097380

Difficult: Mothering Challenging Adult Children Through Conflict and Change

Show Notes

“Does anybody have a map?...” - a lyric from the show Dear Evan Hansen, sung by the parents of the show’s adolescent children.

If you are a “Mom in the Trenches” of serious mental illness in your child, you also know the feeling - all too well .

Judith R. Smith, (mother, psychotherapist, professor, researcher on women’s issues as they age) noticed that the topic of mothering challenging adult kids was a topic that had no map - at least on the bookshelves.

So she researched, and wrote one, and it’s available this month.

We ask:

• Why this book?

• What did you learn in your research and interviews with mothers of challenging adult children?

• What does shame have to do with it?

• “ Unpaid and unrecognized maternal caregiving work continues to limit women’s quality of life” - what can mothers do to help themselves?

• Did you learn any tips for helping or handling our challenging adult kids?
  

“Difficult brings to life the conflicts that arise for mothers who are confronted with the unexpected, burdensome, and even catastrophic dependencies of their adult children associated with mental illness, substance use, or chronic unemployment”

Links:

Amazon - get the book!

Twitter: @JudithRSmithPhd

Judith’s facebook page: Difficult Mothering

judithRSmith@difficultmothering.com

Difficult Mothering Website

JASA - for aging services in NYC 

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”, Happier Made Simple)

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/1604296/10049251

Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad

Show Notes

Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad, DJ Jaffe Advocate

Sabah has a brother with mental illness, and is an advocate for him, and more: she  is legislative and policy counsel with Treatment Advocacy Center (see episode 31).

SMI is challenging enough, but what does racial inequality add to the picture? Sabah references one of her favorite quotes: "Racism isn't the shark in the water, it is the water." 
Or: is it more like smog, that we can each do something to help clear?

According to evermindgroup.com, 

“Black, indigenous, and people of color (BIPOC) are impacted both in terms of increased risk for mental health problems and in their access to mental health care. Unfortunately, systemic barriers and inequities prevent those in BIPOC communities from receiving the behavioral health treatment they need. When BIPOC communities are disproportionately affected during moments of national crisis, this problem is exacerbated. “

Is the system imbalanced? Biased?

Let’s find out.

Questions:

1. Tell us your story and why you do the work you do.

2. Tell us about your recent report on inequities in diversion programs.

3. What other inequities do you see?

4. Does the current mental health system's often poor treatment of families especially harm families of color?

5. Are there any ways our podcast could be more welcoming to BIPOC people? Should we publicize your podcast in any way? If so, how?

Links:

https://www.nami.org/Your-Journey/Identity-and-Cultural-Dimensions

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/1604296/9949852

The Deep Dark Road: Living With Schizophrenia and Coming Back. Ryan’s Story.

Show Notes

An Acid Trip in college led to “never feeling the same again” - to actions to feed drug habits, to inner thoughts of suicide and harm, a diagnosis of schizophrenia, treatment - and now, a Master's Degree and full-time work.

The 3 Moms ask Ryan the questions our sons aren’t ready to answer.

• What does psychosis feel like?

• What is the effect of weed on your symptoms?

• Do you tell potential new friends you have schizophrenia?

• What support helps you? Family? Friends?

• What are your “extended thoughts” like?

• Why did you ask for voluntary hospital stay?

• What advice would you give others with sz? What would a peer support network mean to you?

Ryan says:

“Being diagnosed with schizophrenia was my second chance at life in a very, very weird way.”

“Paranoia can be a deep, dark road, especially if you’re not aware of it. ”

“I'm very happy with where I'm at. It's enough, where I can recognize that I have an illness and that I am hallucinating but not enough where my hallucinations run my life.”

“The great part about reality is that it’s shared. I was not sharing with other people.”   

" I will continue to listen to your podcast to understand the struggle my family goes through. In bits in pieces, of course, because too much of that at once could be an overload."

What helps Ryan: Advice to others with schizophrenia:

• Take your meds (when dosage reduced, hallucinations increase)

• Don’t smoke weed.

• Practice mindfulness. -  be aware of your “voices” and get out of your head.

• “You’re a genius. And I mean that people are always going to treat you like you're different, and you are. It takes an incredibly strong person to go through what you're going through. And it's not going to be easy, but God put that on you, for a reason and you're strong you're intelligent. One day you'll have the strength to confront your paranoia. Until then rely on your family, rely on your friends, rely on the people around you. It's okay to not be okay, but it's okay to be okay, too, and one day you'll be okay, I promise.”

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/1604296/9927037

Fellowship Place, One Supportive Community Fostering Mental Health - Ep.33

Show Notes

“Housing…employment…daytime structure. There needs to be something for people in between all those medical appointments in order to really have a positive meaningful life.” -  Guest Mary Guerrera, Exec. director 

After hospitalization - what? Many people with mental health issues, and their families, struggle to find answers to that question.

What would true support and community look like? What is possible?

Fellowship Place in New Haven, CT has the following mission statement:

Mission Statement

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.

Our guest today is Mary Guerrara, Executive Director of Fellowship Place.

Terms to know:

HUD = Housing and Urban Development

NAMI = National Alliance on Mental Illness

NIMBY = “not in my back yard” 

We ask:

1. What is Fellowship place? Mission and how you make it work .What is it like there? 

2. Your personal story - why do you do this work?

3. How is it funded?

4. How can someone get a placement?

5. What are the challenges? 

6. How can families help? -  ADVOCACY. Fight for research. etc.
   

Quotes: from Mary

“You can’t take no for an answer” 

“The most significant thing that I have found in my career is how you can't just rely on the government, you can't just rely on professionals, you really need a partnership.”

“Families can advocate for more funding to be able to develop projects that combine all of these elements:  affordability, support services, and a peer support network.”

“There needs to be something for people in between all those medical appointments in order to really have a positive meaningful life.”

Links: 

https://fellowshipplace.org/ 

Pathways:

https://pways.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/1604296/9881241

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