Schizophrenia: Three Moms in the Trenches
Voices from the place where schizophrenia and real life collide
audio podcast or YouTube video
Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Two more riveting memoirs from fellow MRQs (Mothers who Refused to Quit) Mindy Greiling and Miriam Feldman affected me so much I had to get in touch – and this new podcast was born:
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What do we talk about?
Well, the truth. And we have guests, too. Some topics:
What’s Broken About the Mental Health system? – and how can it be fixed?
Early Detection
Conservatorship
The Voices
What Is Schizophrenia? What is it like?
Housing
Psychosis
Recovery
Family Loss and Needs
Where can you find it? Lots of places!
Audio: right here at randyekaye.com (see below) or wherever you get your podcasts. Apple/iTunes, Stitcher, Spotify, Google Podcasts, Amazon Music, or here on our host site buzzsprout.
Video:
our YouTube channel for this podcast Schizophrenia: three Moms in the Trenches
Randye’s youtube channel for Ben Behind his Voices speeches and interviews
Twitter: https://twitter.com/SZ3MomsTrenches
please comment, subscribe, and share!
Who Are We?
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“)
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thank you! please comment, subscribe and share
Kimberly: (Facebook comment)
“This is one of the best podcasts I’ve heard on SMI and Schizophrenia. I have found so many resources and learned so much from the guest speakers and these three wonderful women advocates: Randye, Mindy, and Miriam. I am thankful for what you three ladies are doing. Through your podcast I have found hope and inspiration. I truly thank you for the work you are doing here.”
Jacqueline: (via Instagram comment)
” I feel so blessed to have the opportunity to tune into your podcasts. I’ve almost listened to all of them, I can’t get enough! You have impacted me greatly and I feel a part of my life has changed because of you. So, thank you!”
Susan –
A friend of a friend recommended your podcast and I can’t thank them enough for doing so. Have made my way through every episode and am so grateful for what you 3 do. I’ve shared w my Family to Family class and you have many more new listeners…Very grateful to you. Sending thanks and hope.
Christal Cori –
Thank you for this! My mother had schizophrenia, and it is great to have more conversation around this complex disease and its ripple effect.
Mary Troy
Thank you for your advocacy and for this outstanding podcast Randye! “It is what it is!”
Shelley Dillenberg, Facebook (bbhv reader group)
I listened. I feel like I personally know all 3 of you. Looking forward to the next one. I would love to join the discussion too..
Laura Baxter: (fb message)
Schizophrenia mom here. Thank you so much for sharing your story… God bless you hang in there.
Jody DeLeon:
I LOVED the first podcast and actually wanted to post it here . Is there a way to sign up for notifications with the podcast, so I can know when there is a new one ? I don’t want to miss it !
Jen Johnson
So critically REAL! Essential information and advice and incredible mothers!
Melanie Noble-Barket
♥️Thank you for providing these videos 😊 It’s just so helpful and comforting to hear your stories and experiences and to know I’m not alone in this nightmare. I also am thankful to learn about the books/authors and have read or recently ordered them all! I do wish there was an ability to have a Q&A, but I also understand the limitations.
Lynn Merritt Stewart –
Just yesterday, I listened to episode six on conservatorship. Of course, I’ve been loving every episode! Your three moms episodes have been fantastic! You’ve helped so many! Although my situation is different since I’m not dealing with schizophrenia you have also helped me! There are so many similarities with different types of mental illness! I really look forward to each new episode! Looking forward to episode seven!!
"They Die with their Rights On” - Our Broken System of Emergency Psychiatry
Show Notes
Interview with Lynn Nanos, L.I.C.S.W.
If you’ve ever wondered why our loved ones aren’t getting the help they need, Lynn writes about her side of the process in the book Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry.
Stories about her patients open our hearts, and she shares clear and valuable solutions to help fix the problems.
"They died with their rights on” - what’s wrong with that?
How do inpatient units discriminate against those who are most sick?
How can discrimination be curtailed or eliminated?
How common is it for you to evaluate people who are clearly sick enough to be in the hospital, but there aren’t enough markers to warrant hospitalization?
The law only cares about what is “imminent.” Why?
Psychiatric involuntary transfer and hold laws
The revolving door of cycling in and out of hospitals and jails.
AOT - Assisted Outpatient Treatment
Peer specialists - do they go too far?
The antipsychiatry movement - harmful or helpful?
IMD exclusion
HIPAA
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7990354
Conservatorship for Schizophrenia: Who Needs it? Why? and How?
Show Notes
In the news: Britney Spears and conservatorship
Brief Sons’ Recovery updates, “good and bad” - and The Miracle of Ordinary
What is Conservatorship? - varies from state to state
How we did - or didn’t - get to be our sons’ conservator/guardian
Mindy and Mimi - Managing without conservatorship
Randye and Ben’s 's Journey to Conservatorship - and Why
Releases of Information
Can you get right to involuntary commitment? Right to Medicate?
Renewing, and Annual Reports
Why the Relationship Matters
Guardianship and Civil Commitment - Minnesota
Protecting Loved Ones from Being Victims
Protecting Ourselves from Being Victims
Some Myths about Guardianship
A few workarounds we use
Quotes:
“My feeling about all this is: Get the Job Done.We need to take care of our kids.” -Mimi
“Conservatorship? I use it to protect him. I use it to be there if needed. I can save him from financial decisions he made and wasn’t equipped to make..” - Randye
“They burglarized our home for drug money. It was going from bad to worse. And all of his mental health workers said there’s nothing that we can do. He’s his own person.” - Mindy
“Society does recognize schizophrenia or any of its versions as vulnerable.” - Mindy
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7900045
Family Stories and Top Five Grassroots Changes in Serious Mental Illness: Dede Ranahan, part 2
Show Notes
Top Five changes we Need - and More
#1 Reclassify SMI (Serious Mental Illness) as a physical/medical, not behavioral condition - we need to fund more research : and Why is there no cure for SZ?
#2 - HIPAA (discussed in more detail in Episode 4)
#3 - Repeal the IMD Exclusion (would make more hospital beds available for SMI)
#4 - Full Continuum of Care
#5 - Decriminalize SMI
Also : Early signs? Early Detection.
A state level change that is helping families in MN
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7744891
64+ Family Stories and Grassroots Change: Dede Ranahan and 64 More Moms, Part 1
Show Notes
Interview with Dede Ranahan, author and editor (64 co-authors) of “Tomorrow Was Yesterday...Mothers Across the Nation Tell It Like It Is“ living with SMI (Serious Mental Illness) in our loved ones. Not just family stories, but about action. Advocacy. What we want to see happen to help families like ours.
Author Talk: How we got our books from idea to publication
How Dede found and collected 64+ stories of Serious Mental Illness in the family
Getting change on a Federal level to help families- The White House Book Project
Getting Down to Grass Roots - the 5-point plan for change
HIPAA reform- #2 on the list, and why it matters so much
Preview of Part 2 (Episode 5) - the rest of the Five-Point Plan, and what we can do
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7673758
Let's talk about the voices - What the heck is schizophrenia ?
Show Notes
What is schizophrenia? - definitions we use/hear - what it is not
What do you think happens in your son’s head when symptomatic? What does it look like to you and your family? What do you observe?
What changes when treatment is effective? What doesn’t change?
Positive and Negative Symptoms of Schizophrenia
How can we empathize?
What effect do street drugs have on treatment?
Quotes:
“Schizophrenia is a serious mental disorder in which people interpret reality abnormally. Schizophrenia may result in some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning, and can be disabling. People with schizophrenia require lifelong treatment.” - MayoClinic
“The fact that he would have this constant loop of negative voices in his head, and I have no ability to fix it or help him...it’s devastating” - Mimi
“And I’ve heard him whisper, under his breath, ‘no, that’s just my mom’ which makes me think ‘what are the voices telling him about me?’”- Randye
“Sometimes he’ll do a reality check on the ‘voices.’ He’ll say ‘Mom, did you just say you don’t like me?’ And I assure him I would never say that” - Mindy
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7516468
Getting Help:Low Points, Wild Goose Chases and Lifelines
Show Notes
Q: Describe one of your lowest points as schizophrenia progressed in your son - how did you survive?
Q: Were there “wild goose chases” while trying to figure out what is happening?
Q: Describe a moment of hope / accomplishment - what was working ?
Getting Help: "SEARCH"
Support - emotional, practical - how to feel less alone
Education - Books, Classes
Acceptance - how to get there, stay there?
Resilience - building the skills
Communication skills - what helps not make things worse?
Hope/Humor
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7392658
Who we are, what we know, how to cope
Show Notes
Why this podcast? - a place to tell the truth about SZ in the family
Our stories, sons, our books (and why we wrote them)
Who were our sons ….before?
Where are our sons today?
What has been the hardest thing about this so far?
PEOPLE ARE ASKING...What we wish we’d known earlier
Each close with message:
Mimi - Joy is still possible
Mindy - advocate!
Randye - It is what it is - savor every good moment but lower expectations
How to get in touch with us
Please share! And send questions you want us to talk real about
Join us again for next Episode: Sharing what has helped us - tips through the trenches
https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7282747