ONE MOM'S LIST OF SMI NEEDS by Stacy Kollias

The “mental health system” isn’t really a system of care. There is no real “system” that exists.

We need funding to be spent on inpatient beds where the SMI (serious mental illness) patient stays until the “right” meds are found and he/she has fully stabilized. Not the treat and street situation we have now.

We need 24/7 intense supportive housing after discharge to keep the SMI on track with meds, shelter, food, and safety.

We need to build our housing infrastructure to accommodate differing levels of care for this population so, as they progress in recovery, they have a home they can afford and remain in.

We need to build outpatient clinics who work closely with the hospitals and residential treatment facilities to continue the same level of care when SMI are outpatients.

We need to change our involuntary civil commitment laws to mandate medication for inpatient and outpatients.

We need to repeal the IMD Exclusion.

We need HIPAA reform.

We need to fund research for schizophrenia and other serious mental illnesses.

We need to stop the discrimination of SMI and call it what it is — a brain disease.

We need neurologists and psychiatrists to work together and we need more of them.

We need clinical nurses and competent case workers.

We need so many vital things that aren’t currently in place, or they are failing miserably, and we watch our loved ones living their lives as the walking dead.

I would love to help everyone with a mental illness, but the truth is the chronically symptomatic SMI have been getting the shaft for generations. Since they can’t usually grasp their own best interests and needs — let alone articulate them in a way that will be heard and respected — they’re easily pushed to the back of the line. 

Stacy

JUST THE BEGINNING OF OUR JOURNEY WITH OUR SON by Rebecca Distel Reinig

My son, Joseph, was a wonderfully different child who had this uncanny intuition that left many of us scratching our heads in amazement. Our family used to say, "If Joey does not like someone, trust that there is a good reason.”

He truly danced to a different drummer that not all could hear or appreciate. There were two types of people in Joey’s life — those that understood how special he was and accepted him, and those who did not. They teased and bullied him right into adulthood.

Our first negative encounters with law enforcement began several years ago. Joey had struggled his entire life with learning disabilities and attended special ed day class since the second grade. He did graduate from high school with honors and a B+ grade average. After high school graduation, he started using the drug ecstasy and it was obvious his brain could not handle it. He became suicidal and on numerous occasions the police would call for me to pick him up, or they would bring him home after finding him wandering the streets.

His behavior escalated. One day his behavior became out of control. He was at home. He had a butcher knife to his throat and was threatening to take his life. He was either wildly swinging the knife around or poking it deeply into his throat. I called 911 and requested the PERT team — the mental health team at the Oceanside Police Dept. — to come and assist in getting him to the hospital. The team was off duty and the police were dispatched. Within minutes, there were three police cars at our house with the police gang task force officers. Joey began to run from the police officers. One officer tackled him to the ground and had him in a choke hold. I saw was the officer repeatedly punching my son in the face. Later, I found out that Joseph had bitten him in the arm because he couldn’t breath and that was the reason the officer kept hitting him.

I watched, as the incident unfolded, telling the officers Joey needed to be put on a 5150 ( mental health) hold and taken to the hospital. It took three officers to get him cuffed and put into the back of a police car. His face was bloody and he was clearly in a state of psychosis. He started screaming to me, “Please help me!” while beating his head on the passenger window of the patrol car until it derailed the window from its tracks. I kept asking for reassurances that he would be taken to the hospital and put on a psychiatric hold. I was told he would be. He was taken to the hospital long enough to have his face sutured, then taken directly to jail, and charged with three felonies: damaging the police car, resisting arrest, and for biting the police officer.

Joey spent the next 6 months in jail in "protective" custody (solitary confinement). He was allowed out of his cell for one hour out of every 48 hours. His mental health was never addressed other than to keep him highly medicated to prevent him from beating his head on the walls. He spent days at a time in the jail's "safety" cell which is a padded cell with a hole in the floor for a toilet. He was stripped naked and left for days at a time, sometimes in a straight jacket, until he became compliant.

Needless to say, Joey’s mental health spiraled out of control. To top it off, he’s now permanently labeled as a violent offender who assaulted a police officer. Luckily, he was assigned a public defender who worked diligently with us on getting him released. He, along with the district attorney and judge, recognized jail was not the place for him. Sadly, their hands were tied and they admitted my son's options were limited. The district attorney explained that there were limited resources for mental health treatment. She explained there were many programs for drug and alcohol addicts and very few to treat offenders who suffered with mental illness. After six months in jail, Joey was finally released into a residential program for individuals with a dual diagnosis of drug and mental health issues.

We were excited that he may get the help he needed. He struggled there. He left jail after months in solitary confinement. He had very little interaction with people during that time, was left only to his own thoughts — no tv, no radio — and a bible to read. He was so drugged he could barely string two words together. The only help he received in jail was a cocktail of drugs. Sometimes as many as eight at a time. Usually a combination of Klonopin, Ativan, Zyprexa, Depakote, and a monthly injection of Haldol. After only a few weeks, he left the treatment program. He returned home, a shell of the young man we once knew.

Little did we know this was not the end of his problems. Sadly, it was just the beginning of our horrific journey with our son, his mental health, traumatic brain injury, physical health, and fight for his life that continues to this day. Almost five years later.

To be continued…

ADVANCE PRAISE FOR SOONER THAN TOMORROW by Dede Ranahan with Patrick Ranahan

NOTE: As of late this afternoon, 4/11/19, Sooner Than Tomorrow is up on Amazon and available for ordering. I’m in tears. My heart and soul are in this book. Thank you, so much, for reading it.

Click here to link to my Amazon book page:

In a few days, Sooner Than Tomorrow will be available in paperback on Amazon. Dedicated to mothers. Perfect for Mother’s Day! Please leave a comment on Amazon on my book page. I’m counting on word of mouth to attract new readers. Thanks so much!

FROM THE BACK COVER:

I had no idea, as I was writing my diary (June 15, 2013 — June 15, 2014), that I was capturing the last year of my son’s life. Pat died, unexpectedly, on July 23, 2014, on a hospital psych ward. Suddenly, my diary morphed into a more poignant record than I’d anticipated and, after he died, I discovered Pat had been making regular posts on Facebook. I decided to add his comments to my own.

One day, you know it will be your turn. Something alters your projection. There’s a major shift and then events will be referenced as “before” or “after.” Your life as it was versus the way it is now. In Sooner Than Tomorrow, I learn — right along with the reader — what will happen next. We’re all on a journey. Thank you for going on this journey with me.

—Dede Ranahan

Dede Ranahan weaves everyday events into her poignant account of her son’s descent into psychosis. She takes readers, with her and her family, on a harrowing journey — there is no guidebook — that too many of us are forced to take. Written in diary form, with entries by both mother and son, Sooner Than Tomorrow quietly exposes our nation’s shameful failure to help those with serious mental illnesses. It chronicles a mother’s unending love for a child and a son’s struggles to be well. An important book. A loving tribute. A powerful story that tugs at the heart and leaves readers asking, “Why can’t we do better?”

—Pete Earley,
author of CRAZY: A Father’s Search
Through America’s Mental Health Madness

This book about psychiatric brain disease is poignant and painful, but, ultimately, a necessary read. In its well-constructed pages, you’ll find a mother’s diary of her wonderful son and his terrible illness. Every clinician needs a copy of this, every mental health worker, every doctor, and, certainly, every family. Sooner Than Tomorrow is as real as storytelling gets. There are no stories more honest than those of our children who live with mental illnesses. This book tells one such story beautifully.

—Laura Pogliano,
mother of Zac, Board Member, SARDAA
(Schizophrenia and Related Disorders Alliance of America)

Among the uncountable tragedies of the mental illness sub-nation, is its near-invisibility to its host society. So-called normal people live alongside neighbors—even friends—whose quiet pain, mourning, terror, and desperation would affront the nation’s conscience if it were better known. Dede Ranahan is among the heroic witnesses who are breaking that silence. Her memoir of the loss of her son — passionate, eloquent, revelatory, and unspeakably brave — brilliantly takes its place among the beacons of light and truth telling that point the way to the reclamation of our most helpless brothers and sisters, sons and daughters, mothers and fathers.

—Ron Powers,
Pulitzer Prize-winning journalist, author of
No One CaresAbout Crazy People:
The Chaos and Heartbreak of Mental Health in America

MY GOAL IS NOT HAPPINESS BUT HUMAN UNDERSTANDING by Jerri Clark

Earlier in the week, Jerri Clark’s 23 year-old son killed himself. On March 28, Jerri wrote:

Today, extended family of our beloved Calvin Clark arrive in Vancouver, WA, to celebrate his brief but spectacular life and to mourn with us. Deborah Wang, reporter for KUOW, released this article (below). 

Deborah interviewed my husband and me as we packed up Calvin's apartment in Seattle last week. She captured some of the complex emotions that flooded us that day and that continue to surge through our systems as we process this tremendous loss and seek a path forward. My goal is not happiness but human understanding and compassion within the complexity of life. I'd like to explain this a little more.

Accepting that happiness is a momentary and fleeting aspect of life and not the "goal" leaves room for grief, struggle, and confusion. Those equally important experiences cannot be disregarded as bad, wrong or something to avoid. Families impacted by mental illness can seek comfort in accepting that happiness is not the only experience worth feeling.

My family and I are going to be with our emotions this weekend, in all of their complexities. Peace and gratitude to all who have reached out with love. Please find courage to sit with whatever you are sitting with right now and see the path lit before you. What is yours to say or do? What does that action look like? How will you make it manifest?

Anne Frank: "How wonderful it is that nobody need wait a single moment before starting to improve the world?"

Jerri Clark is the founder of MOMI - Mothers of the Mentally Ill

https://www.facebook.com/MOMI-Mothers-of-the-Mentally-Ill-287852191968017/

Read Deborah Wang’s article: Click here.

HAPPY PIC

I don’t see you. You don’t see me.

Hope you have a good weekend everybody.

ACKNOWLEGMENTS FOR SOONER THAN TOMORROW (Coming Soon) by Dede Ranahan

My book, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life, has been six years in the making. In a few days, it will become available on Amazon. The journey continues.

A C K N O W L E D G M E N T S

(page 445 in Sooner Than Tomorrow)

First, thank you to my son, Patrick. Thank you for your poetry, your Facebook posts, and your life. You’re the most courageous person I’ve ever known.

Thank you to my daughters, Megan Mace, Marisa Farnsworth, and Kerry Joiner, for reading Sooner Than Tomorrow and giving me permission to put it out there, sharing our family with the world. Your endorsements mean everything to me.

Thank you to everyone I mentioned in the telling of my story. We’re all in this thing we call “life” together.

Thank you to early readers: Ann Hedrick, Pat West Guinn, Kathy Hayes, Mary Lyn Rusmore-Villaume, Rosemary Sarka, and Irene Underwood. You gave me the cojones to believe in myself.

Thank you to the cheerleaders, those of you read my book excerpts week after week at soonerthantomorrow.com and sent me emails, text messages, cards, and letters: Joan Andersen, Tama
Bell, Chris Biswell, Judy Bracken, Madeleine Cunningham, Bev Chinello, Deborah Fabos, Anne Schmidt Francisco, Heidi Franke, Sheila Ganz, Jeanne Gore, Joyce Herrerias, Swannie Hoehn, Rose King, Nancy Krause, Joan Logue, Grace McAndrews, Jan McKim, Mary Murphy, Fran Neves, Liz Noel, Teresa Pasquini, Den Proudly, Karen Riches, Mary Sheldon, Stace Shurson, Sandy Turner, Kimberlee West, Annette Williamson, and to so many more of you who left comments, likes, and loves on Facebook. You kept me going, especially on the days when I thought, what am I doing?

Thank you to Sharon Lefkov, Kerry Joiner, and Michele Joiner for proofing my pages for spellings and typos. Thank you to my little brother, Jim Moon, for bringing my old photos back to life. Acknowledgments also to Sue Clark, my first editor, who read every page out loud with me and assured me, “Yes, this is interesting.” And to the Lincoln Library writer’s class who listened, in the beginning, when Pat was still with us.

Special hugs to Pat’s Facebook friends.

Thank you to Michele DeFilippo and Ronda Rawlins at 1106 Design for your professionalism and guidance.

And finally, thank you to all of you—those I know and don’t know—who are reading Sooner Than Tomorrow. Readers are the whole point of writing. The why in the what if.

—Dede Ranahan

P.S. Love to my heroes—the millions of mothers of the seriously mentally ill who fight for their children every single day.

MENTAL HEALTH CLINICIANS FIGHTING TO FIX MENTAL HEALTH SERVICES by Sal Rosselli

Dear Friend:

Mental illness is a growing epidemic in the United States. Forty-three million Americans experience mental illness in a given year, but more than half never get treatment, according to the National Alliance on Mental Illness.

The National Union of Healthcare Workers has been organizing clinicians to fight for improved mental health care treatment. In 2015, we negotiated a contract that forced Kaiser Permanente, the nation’s largest nonprofit HMO, to hire hundreds more therapists, but far more still needs to be done. In California, Kaiser still has just one mental health clinician for every 3,000 enrolled patients, forcing patients to wait up to two months to see their therapists.

Seong and David Brown learned first-hand how long appointment wait times lead to tragedy.

One summer, their brilliant, beautiful teenage daughter, Elizabeth, returned home from college and confided in them that she was having panic attacks and cutting herself. But after getting an intake appointment at Kaiser Permanente, Elizabeth was told she would have to wait at least six weeks to see the Kaiser therapist again.

One year after Elizabeth’s suicide, the Browns are going public because they don’t want other families to suffer like they have. Last week, the couple was featured prominently in a front page article in the San Francisco Chronicle and CalMatters that examines the struggles families still face in accessing mental health care.

Now the Browns are telling their own story in THIS VIDEO we filmed with them. Please take the time to watch it and share it in your social networks.

The Browns had a good insurance plan. They were paying for quality coverage, yet Elizabeth never received the intensive one-on-one therapy or inpatient treatment she sought from Kaiser. 

Would Kaiser, with its $46 billion in cash and investments, have denied her treatment for cancer or diabetes? Kaiser mental health clinicians won’t stop fighting until California’s largest medical provider finally takes real steps to fix its mental health services. 

In Solidarity,
Sal Rosselli, President
National Union of Healthcare Workers

HAPPY PIC

Spring walk.

Hope you have a good weekend everybody!

THE COST OF NOT CARING - A LETTER TO CONGRESSMAN UPTON FROM NSSC

NSSC is a nonpartisan alliance of diverse individuals and organizations who are uniting to ensure that mental illness, health, and criminal justice systems count those with SMI, SED, and their families in all federal, state, and local policy reforms. We are voices for the 10 million adults and 7 million children living with and dying too young from serious mental illness.

March 22, 2019

The Honorable Fred Upton
2183 Rayburn House Office Building
Washington, DC 20515

Dear Mr. Upton,

Our coalition is approaching you today in an effort to persuade you to introduce a bill which would clarify the cost of untreated and under treated serious mental illness (SMI) in America. We refer to this as “The Cost of Not Caring.” This bill would ask our federal, state and local governments to provide a report detailing the exact amount of monies allotted each fiscal year to address the effects of untreated serious mental illness on our society.

Our coalition is currently attempting to quantify the personal cost to our families related to caring for a loved one with a serious mental illness. Through a conjoined effort, we are calculating the cost of items such as out of pocket mental health care costs -- i.e., lost wages, psychiatric services required for caregivers and family members, homes lost to second and third mortgages to gain treatment or to pay legal fees, and 401Ks/Retirement Accounts that have been exhausted because of the need to secure help for a loved one with SMI. These are just some examples of overlooked expenses that we are personally left to deal with when we are responsible for a person with a serious mental illness who is not receiving proper care.

However, we cannot assign a dollar amount to unquantifiable costs -- such as, the marriages that have been destroyed, the family relationships that have fallen apart under the stress, the careers destroyed and jobs lost, the physical injuries or deaths of family members and others inflicted by those with SMI--and the dreams and futures of our loved ones that have been shattered when serious mental illness presents itself. These expenses we understand all too well.

We need your help to address the other expenses; the ones that are affecting our nation. We would like you to introduce a bill that would require an account of the actual total expense that untreated mental illness has on our society as a whole. This is going to be a formidable task, but one that must be accomplished. We need to determine exactly what the cost of not caring is having on our society. We hope that having an accountable system of recorded expenditures will help our government finally understand that being proactive, rather than reactive in the treatment of serious mental illnesses, not only makes more sense on a humanitarian level, but also on a financial level.        

Particular areas of interest that this bill should address listed as sample costs -- at federal, state, and local level:
1. Cost of physical illnesses. Please bear in mind that 75% of persons with SMI have at least one chronic physical illness, 50% have two, and 33% have 3 or more.
2. Cost of homelessness with the focus on persons with untreated SMI, including costs to courts, police, prisons, judicial systems, and medical systems.
3. Cost of not allowing for AOT (Assisted Outpatient Treatment) to treat those who suffer from serious mental illness and anosognosia living with family,  including contact with police, crisis services, and courts when we cannot get help for our loved ones. Involvement of treatment teams, in communities where those resources even exist, who continue to engage with patients are often necessary several times a week because patients are in crisis, but there is no improvement when patients are refusing medication.
4. Cost of SMI for patients who go through revolving doors--in and out of hospitals and emergency rooms because they are not treated early enough and/or not kept long enough to stabilize them.
5. Cost of criminal justice involvement among persons with SMI with and without treatment.
6. Cost of disability payments.
7. Cost of lost income.
8. Cost to family members who bear much of the emotional and financial burden of these illnesses.
9. Cost of healthcare for co-morbid conditions such as substance use disorders (SUD’s).
10. Cost of the loss of productivity due to premature death or those with SMI who are institutionalized, incarcerated, or homeless.

We look forward to hearing from you and hope that you will accept this challenge. The time for us to quantify these costs is now so we can have a discussion, to detail its finer points, and move forward with a strategic plan that includes accountability for “The Cost of Not Caring.”

Sincerely,
National Shattering Silence Coalition
https://www.facebook.com/NationalNSSC/

Full disclosure: Dede Ranahan is member of the NSSC Steering Committee.

MY VIDEO MAY BE DIFFICULT TO WATCH by Sherri McGimsey

Click on the link below to see Sherri’s video of what her son’s apartment looks like when she checks in on him.

https://www.facebook.com/sherri.mcgimsey/videos/10214387428258897/

This video shows just a small piece of what fighting to keep your child, with brain disease, alive looks like.

Our Beautiful Mind was med compliant, yet the meds were not working. The VA MHICH (Mental Health Intensive Case Management) team visited every week. A nurse came to give Matt injections every two weeks. One said to me, “Your level of clean is different from another’s.” He was not her child.

We talked every day. We saw him almost every day. We cleaned every week. (The cost to hire someone to clean up bodily fluids was prohibitive.) Matt threw up “the evil,” for years, when he lived in our home and then when he lived, independently, in our community. He was isolated living with us and isolated living alone.

Today will be day 486 of 22 veterans dying by suicide each day, and Day 486 we’re thankful we still have our son. Tomorrow, Matt gets a pass. Today, he’s the best he can be due to care and treatment he’s receiving.

I’ve learned, if you’ve not lived it, you’ll never really understand the struggle. So I’m sharing our struggles, hopefully, for more understanding, more facilities, and more crisis teams. I’m not sure what more I can do, until laws are changed and people truly believe that taking care of our weakest is more cost effective than not caring.

Every day I learn a little more, and this angry mom simmers. What if Matt had received the proper care after that first psychosis? I take deep breaths and hang onto hope that younger moms never have to fight this hard, or have to worry if their child will live to see another day.

Cure schizophrenia. We have to do better and we need your help.