I'M OKAY. ARE YOU OKAY? by Dede Ranahan

I’ve been away from my blog and your stories for a few weeks now. I’ve been taking a break from some of the heaviness of both as I execute my mom’s last wishes and tie up loose ends for her.

My mom, Evelyn, passed on August 21, 2019, at the age of 101. At first, she wasn’t ready. She kept asking when she could leave the ICU and go back to her room in her assisted living facility. “This is the pits,” she said. “I want to go home.”

Two of my daughters, my brother and sister-in-law, and I took turns staying with her. We’d seen her pull herself out of tight places before. We didn’t know if she would do it again. As the week in the hospital dragged on, it became apparent that this struggle might be the last struggle. On the day before she died, I was alone with her for a while. It was difficult for her to talk but she turned to me and said, “I’m okay. Are you okay?” This caught me off guard. I managed to reply, “I’m okay, too. We’re both okay.” That was our last exchange.

Later my mom asked my brother, “What did I do wrong?” Mom was religious about taking her pills every day at the exact right time. We think she thought she might live forever if she just followed “the rules.” My brother said, “Mom, you didn’t do anything wrong.” Then she asked, “When is the funeral?”

Once Mom understood that her life was coming to an end, she made up her mind — as she always did — to go with the flow. She fell asleep for the last time the next day.

I miss my mom but I have to say that my grief for her is different from my grief for my son. Five years since Pat’s passing, sadness pulses in my veins. It lurks in my bones. I think of him every day. Many times every day. Actually, I grieve for him on two levels. I grieve that he’s gone. I grieve for the life that he didn’t get to have due to his mental illness. I grieved for him when he was here. I grieve for him now that his life is over. Other moms and dads tell me the same thing. Somehow, we lose one person twice. I don’t think this pain will abate. It sears my soul.

Death is a natural part of life. My mom’s death seemed natural. She lived a long, not easy, full life. She was my parent and parents are supposed to die first. My son’s death seemed unnatural. He was too young. He tried so hard. He didn’t want to die. One of the last things he said was “Help get me out of here. I have a car waiting around the back. This hospital is killing people.” Pat was delusional but I wonder if he wasn’t onto something. Even in psychosis, he always had an eerie ability to identify the elephant in the room. The next morning, a doctor at the hospital who’d refused to talk to me about my son, called. He said, “I’m sorry. Your son died fifteen minutes ago.”

My mom’s passing is making me emotional again. Losing a child twice to serious mental illness is so damn hard. I’m in tears as I write but soon I’ll get back to my blog and your stories. Our stories must be told. We must tell our stories over and over. Until someone listens.

Meanwhile, I consider my mom’s last words to me. When it’s my turn to leave this life, I hope I’ll have the generosity to show concern for others. I hope I’ll have the grace to say, “I’m okay. Are you okay?”

Pat and my mom

Pat and my mom

TAKING A BREAK. THANK YOU FOR YOUR AMAZON REVIEWS by Dede Ranahan

Dear Sooner Than Tomorrow Readers and Writers:

I’m taking a break from my blog for the next 3 or 4 weeks. I must execute my mother’s small estate, attend to a celebration of her life, and reflect on her life and passing. I’ll also be speaking about Sooner Than Tomorrow at the NAMI Kentucky State Conference. I’m leaving you with some of the reviews readers have written on my Amazon book page. Thank you so much for these comments and recommendations. Reviews are among the best tools in a writer’s toolbox to garner more readers. I appreciate them more than you know.

Away from my blog but always thinking of you. You’re the most dedicated and courageous people on the planet. Have a good month.

P.S. If you’d like a copy of Grassroots 2020: A 5-Part Plan to Address Serious Mental Illness (SMI) to send to 2020 presidential candidates, and to local and state influencers, send me your email and I’ll forward the documents to you. You can also read the plan here in the archives on the right hand side: August 6, 2019, “Please Forward to Those in Your Sphere of Influence.” dede@soonerthantomorrow.com

SOONER THAN TOMORROW — A MOTHER’S DIARY ABOUT MENTAL ILLNESS, FAMILY, AND EVERYDAY LIFE

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AMAZON REVIEWS

kayababy 5.0 out of 5 stars
Thank you for putting your experiences, into words
For so many of us, who have a child with these issues, our experiences have been similar, and we struggle to put them into words. I must say, this diary has been at times the "oh my God, I know exactly what she means" and a flood of tears, while other times a familiar feeling of smiles and happiness from that same place of recognition; it just helps to read it. I am so happy to have this book. It has a sort of sacredness about its story, especially with all of Pat's inputs, so that we get to hear from him, getting to know who he is as well through this excellent book his mother wrote. Thank you again Dede.

Christy B 5.0 out of 5 stars
Well written — heart felt — easy read — honest chronicle of a life ended too soon.
I don't know if "enjoyed" is the right word — very touched by this book. The writing is superb — the chapters short — easy to put down and pick up again. I was engrossed by the family dynamics — daughter, grandmother, mother, sister. The entries about the grandkids are delicious. Pat comes across as a highly intelligent, musically talented, funny guy. Loved his FB posts. A must read. Highly recommend.

Erin Eisner 5.0 out of 5 stars
So many reasons to read this great book!
I found this book interesting and important in so many ways! The author writes with an amazing sense of humor and compassionate insight about every thing from her 101 year old mom and grand-kids, to the ants invading her home. She brilliantly weaves in her late son’s poetry and Facebook posts, which gives true timely context, and reveals how she interpreted both monumental and mundane events she encountered in the year before her beloved son would unexpectedly and mysteriously pass away. While gut-wrenchingly tragic in the end, it has so many uplifting moments I found myself deeply engaged and inspired to learn more about many things. It made me want to read. It made me want to write. It made me want to live. It made me want to hold my two young babies a little tighter and pray they will be spared from mental illness, and if not that I will have the same patience, love and resolve the author had in doing all she could in a climate that makes nothing in this realm easy. To the author—thank you for sharing with the world your beautiful stories about your family and life in general, and thank you for your fight and efforts to improve mental health conditions and policies in this country, and for giving support to other families going through their own mental health challenges. I hope you have and will continue to write more not only for your own peace, but because your words and stories must continue to be shared and heard. You don’t have to have a close family member with mental illness to benefit and appreciate this book— if you are a human on this planet who can read English I highly recommend you read Sooner Than Tomorrow because it has much in it for everyone to ponder.

Paula Quertermous 5.0 out of 5 stars
Dede Ranahan shares a glimpse families endure while trying to get mental health help in time
This book has moved me deeply. Dede Ranahan captures the slippery chasm family members with serious mental illness try to navigate to have some quality of life — and in spite of lack of enough good services. Dede, your writing mesmerized me!! I can relate so much as the mother of an adult daughter with SMI. Every day can contain an element giving you a surge of motherly hope — or a crushing incident that spikes to fear for your child. The exhaustion from living in long term doubt requires support. This book is a gem of information!

L. Turley 5.0 out of 5 stars
I highly recommend this book.
I read books these days in short spurts, often just a few pages at a time, especially when the material hits me in a way that I need to stop and process before continuing. This book is like that for me. It is both a daily journal of everyday events and yet, within those events there is a deep, insightful look at a life that is shared with us for a purpose. I had been waiting until I finished this book to write a review, but it may take me awhile to finish, as I sit and savor these snapshots glimpses into the lives of the individuals within. Dede shares her life and her innermost thoughts in a down-to-earth way as she allows us to walk with her through the journey of her son's mental illness, and reminds us that we are not alone, but we walk together. For those who share this journey and share her prayer for change to come "Sooner Than Tomorrow” and for those who are fortunate enough not to share the journey, but who wish to understand, I highly recommend this book.

NO STORIES THIS WEEK by Dede Ranahan

My 101 year-old mother, Evelyn or GG, is in the hospital and that’s where I’ve been every day for a week. My family and I don’t want her to be alone when she passes. She doesn’t want to go :-( She’s always been a fighter (stubborn might be another word :-) We don’t want her to leave either, but her quality of life is deteriorating quickly. Please hold good thoughts for her.

My mother, Evelyn, and me 1945. I love you, Mom. It’s okay to go. Pat’s waiting for you. He wants to give you a hug.

My mother, Evelyn, and me 1945. I love you, Mom. It’s okay to go. Pat’s waiting for you. He wants to give you a hug.

PLEASE HELP US BRING SERIOUS MENTAL ILLNESS INTO 2020 POLITICAL DISCOURSE by Dede Ranahan

This is the grass-roots effort of serious mental illness advocates from across the country. If you’d like to join us and send these materials — letter, Five-Part Plan, and an attachment of SMI needs to your political representatives and others in your spheres of influence, send me an email and I’ll email these materials back to you. Thanks so much for your help. Dede

dede@soonerthantomorrow.com

TO: All  2020 Presidential Candidates
SUBJECT: Serious Mental Illness (SMI)

So far, 2020 political candidates make rare mention of serious mental illness (SMI — schizophrenia, schizo-affective disorder, OCD, bipolar disorder, and major depression), and the lack of mental illness care in the US.

* The SMI population represents 4-5% (10 million) of the mentally ill in the US. That’s 10 million families and extended families (voters).
* Ten times as many people with SMI are incarcerated as are hospitalized.
* Some SMI individuals are so sick they don’t realize they’re sick (anosognosia), don’t respond to treatment (if they get it) and end up incarcerated, homeless, missing, suicidal or dead.
*It will cost billions to create a viable mental illness system. It’s costing billions, now, in prison over-population, homelessness and cities under siege, lost workdays, family disintegration, suicides, untimely deaths, inundated ER’s and hospitals, violence caused by untreated SMI, overwhelmed police, and in uninformed and misinformed criminal justice systems.

The Five-Part Plan enclosed is the collaborative work of grass-roots advocates from across the country —individuals, professionals, writers, journalists, caregivers, and mothers (always the mothers). Our intent is to put this plan in front of every 2020 presidential candidate. Right now, no candidate is talking about SMI. It’s as if it didn’t exist.

The steps in our plan are baby steps. We can’t immediately address everything that needs to be addressed in our messed up mental illness system, but we have to start somewhere. We’re trying to help 2020 candidates — we know you have a lot on your plates and we appreciate your energy and efforts to make our country better. We’ve created this Five-Part Plan to give you a starting point and a way to introduce SMI into political discourse and public conversation.

We’re asking you to take four initial actions:
1. Please read our plan and make it your own.
2. Put your SMI plan on your campaign website.
3. Talk about SMI on the campaign trail and in campaign debates.
4. Talk with members of the SMI community. We’re willing and able to help you as you move forward.

The SMI community is searching for its 2020 presidential candidate. We’re a large, passionate, motivated, frustrated, hurting, and determined block of voters. We look forward to hearing from you.


Marie Abbott — Waterford, Michigan,
My grandson has autism, bipolar disorder, and development delays. Has his civil 
rights intact.

Jane Anderson — Illinois
My 38 year-old son has paranoid schizophrenia. He was diagnosed at 18. My husband and I are 
caregivers.

Tim Ash — Arcata, California
Caretaker of a volatile, unstable SMI family member because there are no options besides jail and the bushes or doorways.

David Bain — Sacramento, California
I’m living with chronic depression and epilepsy and working to divert SMI from prison into treatment.

Marti Rhoden Bessler — Alexandria, Kentucky
My son’s been suffering from schizoaffective disorder for 19 years within our failed mental health system.

Alisa Bernard — Jupiter, Florida
I have children with SMI.

Judy Bracken — San Ramon California
My  30-year-old son has schizoaffective disorder.

Katherine Smith-Brooks and Bob Brooks — Carlsbad, California
Our SMI son is now stable and working following effective treatment and the same psychiatrist for 20 years. We were his only advocates for many years.

Regina Gipson Burns — Hoover, Alabama

Leslie and Scott J. Carpenter — Iowa City, Iowa
Our son’s been suffering from under-treated schizoaffective disorder for 12 years. He lives in a group home with too few services. He’s been hospitalized 20 times.

Sue Chantry — Vacaville, California
I’ve lived here for many years and watched Mark Rippee, SMI and blind, on the streets of Vacaville with no mental health services.

Barb Cobb — Iowa
My SMI daughter’s been under-treated and under-supported by the current system. She’s endured over 20 hospitalizations and is barely surviving.

Christine Cushing — Vacaville, California
There are no resources or places to live for those who suffer from SMI. For a country that’s so progressed, we’re so far behind taking care of those with SMI.

Lori Daubenspeck — St. Croix, US Virgin Islands
My SMI son is a US Army vet. There’s no SMI facility here and one psychiatrist for the island. We’re in desperate need of facilities, doctors, and federal action.

Kathy Day — Folsom, California
My godson’s been discharged from hospitals many times while considered to be gravely disabled. Laws need to be based on need for treatment rather than time.

Katherine Flannery Dering — Bedford, New York
My brother, Paul, suffered with schizophrenia for 32 years of dwindling care. He died at age 48.

Lois Earley — Phoenix, Arizona
I’m the mother and legal guardian of an adult SMI daughter. I've been battling the behavioral health care system in Arizona since 2004. 

Darla Eaves — Everett, Washington
My husband committed suicide.  My son died in our psychiatric hospital. My daughter, thank God, is here with me and stays on her medication.

Donna Erickson — Abington, Massachusetts
My 34-year-old son has bipolar disorder. He’s been hospitalized 25+ times and cheated out of the life he wanted through no fault of his own.

Sonia Fletcher —- Mount Shasta, California
My daughter’s SMI was untreated when she shot and killed her father in a psychotic break. Our family is heartbroken and literally broken apart.

Anne and Tim Francisco — Orange County, California
Our SMI son was sentenced to prison for a nonviolent offense while he was in a state hospital. He ended his life by suicide while in solitary confinement.

Lynne Gibb — Ojai, California
My daughter’s suffered with schizo-affective disorder for 20 years. She’s been missing, homeless, and hospitalized, but never out of her family’s hearts and thoughts.

Elaine D. Gilliam — Myrtle Beach, South Carolina
My eldest son has paranoid schizophrenia. My eldest daughter committed suicide. Two children are wonderful retired military families.

Jeanne Gore — Shapleigh, Maine
Family member, Coordinator, National Shattering Silence Coalition

Pat Guinn — Lincoln, California
I have an adopted son with SMI.

Catherine (CJ) Hanson
Linda (Rippee) and Joseph Privatte
Lou Rippee — Vacaville, California
SMI blind son, brother, and brother-in-law. No mental health services for 3 decades. Solano County refuses to conserve.
Betty Plowman — I was a neighbor who observed this tragedy for 32 years and tried to help when no one else would.
Chris Plowman — I’ve watched this man waste away on the streets for 30 years untreated. Some people need our help and tax dollars; not be abandoned to rot.
Pam Wilcoxson — Mark’s family’s been fighting for help for him for many years and still have not gotten anywhere. 

Mark and Laura Harreld — Strawberry Point, Iowa
Our SMI son was caught in the criminal justice system for non-violent crimes. He ended his life, to avoid another prison sentence, while in a hospital under armed guard.

Dianne Harris — Grove City, Ohio
My son died of a co-occuring vascular condition before a treatment was found for his negative symptoms of schizoaffective disorder. More research is needed desperately.

Janet Hays — New Orleans, Louisiana
I created Healing Minds NOLA to bring residents, families and stakeholders together to explore alternatives to incarceration, homelessness and death for those suffering with SMI.

Amy Kerr and Paul Cox —- Pasadena, Maryland
We’re caretakers for a 23-year-old son who has schizophrenia and a friend with major depression and end stage renal failure. 

Jeannie Kneisly-Manley —  Elizabeth City, North Carolina
My son has schizophrenia. He has a criminal charge and no court date to get him in the hospital. If I hadn’t bailed him out, he’d still be in  jail waiting.

Stacy Kollias — Henderson, Nevada
I’m the mother/caregiver of a 30-year-old son suffering from schizoaffective disorder.

Dianne Lam — Oakland, California
My son has a dual diagnosis and schizoaffective disorder.

Carole McAfee — Salem, Oregon
My son is living with schizophrenia.

Sherri McGimsey — Morganton, North Carolina
My son is a Marine Veteran with schizoaffective disorder.

Gerri Mele — Cleveland, Ohio

Linda L. Mimms, MA, — Poway, California
The inability to get our ill family member prompt treatment has led to a worsened condition and uncertain prognosis which was totally avoidable.

Alison Monroe — Oakland, California
My 24-year-old daughter is a meth user who has schizophrenia. I’ve tried everything to keep her alive and off the street, with some success.

Nancy Moody — Cambridge, Ohio
My son has schizoaffective disorder.  He’s suffering from withdrawal, seizures, tremors, cognitive impairment, and hallucinations. No one wants to help him.

Mary Murphy  — Springfield, Oregon
My son has schizoaffective and bipolar illness.

Lyn Nanos, LICSW — Natick, Massachusetts
Author: Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry.

Karen Newton — Vacaville, California
My son has bipolar-schizoaffective disorder. While homeless, voices told him to hurt someone. He’s incarcerated while waiting for a bed in Napa State Hospital.

Kelly Nidey — Vincennes, Indiana
My son has struggled with bipolar/schizoaffective disorder for almost 15  years.

Teresa Pasquini — Contra Costa County, California
I’m mom to Danny who is surviving 20 years of suffering, suicidality, solitary, and schizoaffective disorder. There’s no federal action plan for families like mine.

Darlene Patrick —Farmington, Maine
My 32-year-old son has paranoid schizophrenia. He’s been in jail, the hospital, release, repeat.

Gema Pena — Hialeah, Florida
My son, Kristopher, was in solitary for 10 years. He attempted suicide, ate his own feces, was catatonic, and lost over 100 pounds.

Ron Powers — Castleton, Vermont 
Pulitzer prize winner, author of No One Cares About Crazy People
I’m the father of two sons afflicted with schizophrenia. One took his life in 2005.

Paula and Bruce Quertermous — Clinton Township, Michigan
Our 39-year-old daughter has bipolar disorder and cognitive disability from birth.

Dede Ranahan — Lincoln, California
Author: Sooner Than Tomorrow—A Mother’s Diary About Mental Illness, Family, and Everyday Life (2019). soonerthantomorrow.com. My son died in a hospital psych ward in 2014.

Margaret Reece and Greg Gazda — Butte County, California
Our SMI son has been hospitalized 5 times, arrested, and is currently in a mental health court program and living in Yolo County with his grandparents.

Arlene Renslow — Modesto, California
I have two sons with brain damage. One son has schizophrenia. Unless someone does something, things will get worse for everyone.

Mary (Courtney) Sheldon — Poway, California
Mother of 24-year-old SMI son. We’ve winged it for 5 years. My SMI brother died, with his “civil rights intact” behind a dumpster in Anaheim, California.

Martha Mccollister Sroka — Dunkirk, New York
My son has schizophrenia. It’s horrible watching your child change, struggle, and suffer. I request that SMI get the same attention and resources as any other medical illness.

Joanne Strunk — Lexington, Kentucky
My daughter’s been raped, homeless, hospitalized (40+times), and almost died lost in the woods for weeks. She’s dying of neglect due to SMI.

Shelly and Scott Switzer — Sandpoint, Idaho
We’re parents of a 33-year-old son with inadequately treated schizoaffective disorder in Missoula, Montana. SOS We’re barely hanging on.

Diana Mandrell Troup — Texas
My daughter spent 16 years in delusion and psychosis because of bad mental health care. She suffered 50+ involuntary holds, multiple tazings, and traumas.

Laurie Turley — Maine
My sister died due to HIPAA restrictions. One of the last things she said to me was, “They should have let you help me. I wasn’t in my right mind.”

Monica and Kimmo Virtaneva — Hamilton, Montana
Our son, Mika, took his life after the disease schizophrenia took his brain and the criminal justice system took his dignity.

Cheryle Vitelli — Newark, Delaware
I lived with my SMI son for 6 years while he was dangerous with only he and I in the house. Finally, a compassionate police officer pushed to get him help.

Darlene Been Watkins — Moulton, Alabama
My son, Shane, was denied treatment, while in psychosis, because there weren’t enough beds. Two days later, he was shot by police while I watched.

Anna Wellnitz — Oro Valley, Arizona
I’m diagnosed with SMI.

My son, Pat, before our world came undone. Read our story. Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family and Everyday Life. On Amazon. http://www.bit.ly/soonerthantomrrow

My son, Pat, before our world came undone. Read our story. Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family and Everyday Life. On Amazon. http://www.bit.ly/soonerthantomrrow

PLEASE JOIN THE CONVERSTAION ON MY FACEBOOK PAGE by Dede Ranahan

The following is an ongoing discussion on my personal Facebook page - Dede Moon Ranahan. If you’re on Facebook, please click on my page and join the conversation. Or enter your comments through the comment link below. Or send your comments to me in an email: dede@soonerthantomorrow.com

SMI (SERIOUS MENTAL ILLNESS) ADVOCATES AND SUPPORTERS

GOAL: This effort is short-term. To get SMI recommendations for a national SMI plan before the 2020 presidential candidates (Republican, Democrat, Independent). None of them are currently talking about SMI (not mental health, not drug addiction). SMI. The SMI community is looking for a candidate/s who will champion SMI and its concomitant issues. With adults and children impacted and their immediate families, we represent roughly 72 million people in the US.

THE ASK: That candidates talk about SMI in their campaign appearances and debates and post a national SMI plan on their campaign websites.

To encourage them, we'll be submitting a cover letter, one-page outlined/bulleted plan, references and resources to aid them in developing their plan, and if they will read that far, the full list of 18 topic areas.

RESULTS OF YOUR VOTES FOR THE TOP 5 ISSUES FOR A ONE-PAGE PLAN:
1) Reclassification of SMI as neurological brain disorders
2) IMD (Institutes for Mental Disease Exclusion)
3) HIPAA Reform (Health Insurance Portability and Accountability Act)
4) Continuum of Care
5) Decriminalization of SMI

NOW WE MUST REFINE THIS TOP 5 LIST.
PLEASE ANSWER 1 OR MORE OF THESE QUESTIONS IN A FEW SENTENCES:
1) Why is reclassification of SMI important?
2 )Why is IMD repeal important?
3) Why is HIPAA reform important?
4) Why is a Continuum of Care important?
5) Why is Decriminalization of SMI important?

1) Name one specific action a president can take to advance the reclassification of SMI.
2) Name one specific action a president can take to advance IMD repeal?
3) Name one specific action a president can take to advance HIPAA reform?
4) Name one specific action a president can take to advance a Continuum of Care?
5) Name one specific action a president can take to advance the Decriminalization of SMI.

Thanks, Dede

1. RECLASSIFICATION OF SMI
-Reclassify schizophrenia and related disorders as neurological conditions or neurobiological brain disorders. Eliminate “behavioral health” nomenclature.


2. HIPAA (Health Insurance Portability and Accountability Act)
-Reform current HIPAA laws.
-Present patient and family with a social worker to support the family unit throughout the care process including medication and psychiatric treatment.
-Require mandatory training for everyone in the medical profession about HIPAA and a required test on proven knowledge.
-Develop a federal program for the administration of a psychiatric advance directive (PAD) which includes a universal release of information and designates an agent if capacity is lost. Must include enforcement mechanisms to require mental health/illness facilities to follow the directives.

3. IMD (Medicaid’s Institutes for Mental Disease Exclusion)
-Repeal it.
-To prevent warehousing, use unscheduled check-ups on those receiving services.

4. A FULL CONTINUUM OF CARE
-Early intervention at all stages of illness.
-Provide Inpatient (IMD waivers), Outpatient (ACT, FACT, PACT, AOT, Clubhouses), Housing (full array from locked stabilization to unlocked intensive, medium intensive, peer-run PSH, Asylum).
-Require a psychiatric standard of care for various SMI diagnoses like other medical specialties. Diagnosis should be staged as cancer is.
-Provide more long-term care.
-Remove ER’s as entry for mental health hospitalization. The ER process and chaotic environment are not conducive to the well-being of SMI patients.
-Give federal assistance to states providing supportive housing.

5. DECRIMINALIZE SMI
-Eliminate solitary confinement in jails and prisons.
-Support nationwide civil mental health courts and expand criminal ones that are already established to keep SMI out of jails and prisons.
-Establish mental health courts on a federal level, and coordinate federal courts and state-run mental health facilities.
-Move crimes that SMI commit in the federal system into state courts.
-Provide a digitized system to connect county/hospital medical records to jails and prisons.
-Mandate a way for families to provide medical history to jail/prison doctors to inform treatment.
-Provide uniform psychiatric screening of the incarcerated and use standardized protocols for medication of SMI prisoners.
-Require strict limits on waiting for trial time.