WHAT PARENTS WANT FOR THE SERIOUSLY MENTALLY ILL by Dede Ranahan

A couple months ago, I was asked to write an opinion piece that became part of a week-long series on Pete Earley. I'm reposting it here with his permission.

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Mother of Son Who Died In Psych Ward Asks NAMI To Do More. What Parents Want For The Seriously Mentally Ill

Posted: 11 Jul 2018 04:30 AM PDTMother of Son Who Died In Psych Ward Asks NAMI To Do More. What Parents Want For The Seriously Mentally Ill

(7-11-18) This is the second in a series of blogs about a telephone call conducted by a strategic consulting group hired by the National Alliance on Mental Illness that was held with parents of individuals with serious mental illnesses. A majority of the participants on that call were members of an organization called the National Shattering Silence Coalition.  Most were long time NAMI activists which is why I agreed to post their blogs. You can disagree or agree by commenting on my Facebook page. )

What NAMI Needs To Do by Dede Ranahan

My son, Patrick, suffered from serious mental illness (SMI). In 2014, he died in a hospital psych ward where I thought he’d be safe.

So why am I still here as a steering committee member of National Shattering Silence Coalition, and as a former Mental Health Policy Director for NAMI California? Passion, I guess.

An inability to walk away from so much suffering. 

In 2016, I set up a website and blog in honor of Pat’s life and memory. I began posting two stories a week from SMI family members.

This blog has turned into a first-person testament and running record of the horrors and struggles SMI families go through.

It documents their efforts  to try to get help for their loved ones. It highlights the voices of those who are losing their children to prison, the street, and/or to death. If NAMI is sincere about wanting to hear us and help us, it may be worth its members time to visit this website at Sooner Than Tomorrow: A Safe Place To Talk About Mental Illness In Our Families. 

On the recent phone call with NAMI’s strategic planning consultants, I listed seven points that I, as a parent and advocate, want NAMI National and the affiliates to give import and attention to:

1) Establishment of a Family SMI Council. NSSC wants to work within NAMI not outside it. It wasn’t clear on the phone call that this request is being given serious consideration.

2) Reclassification of SMI as brain/physical diseases. This would be a first step to gaining more parity in mental health care and more funding for research. It would also address stigma.

3) Remaking of HIPAA. When my son was on his last hospital journey, I couldn’t get a doctor to talk to me. I was on my son’s Advance Care Directive which we filled out together in good faith but that didn’t matter. Finally, after three weeks, a doctor called. He said, “I’m sorry. Your son died fifteen minutes ago.”

4) Assisted Outpatient Treatment promotion with regulations that it be delivered with respect and compassion.

5) Repeal of the IMD exclusion.  Sleeping on the ground is not better than sleeping in a bed.

6) Peer/Family Reconciliation: This point is a big one for me. When I worked for NAMI California over ten years ago, I wasn’t prepared for the hate and loathing that flew my direction from consumers who wanted nothing to do with talk about involuntary treatment, family rights, and anosognosia. I got it. These peers had suffered at the hands of our medical and judicial systems. They were competent and wanted to make independent decisions for themselves.

But families like mine had different stories about people so ill they couldn’t make good decisions for themselves, would never achieve meaningful recovery, and, if not for their families, would be in much worse circumstances.

Can we please acknowledge that all of us, peers and families, are suffering and that everyone’s experience is valid? Can we simultaneously acknowledge that everyone’s experience is not the same? We must seek a range of solutions to address needs across a spectrum. We need peers and families to work together.

7) Incarceration Reform: On my blog, I’m beginning to exchange correspondence with some mentally ill inmates in the California prison system. On 6/26/2018, I received a letter from a patient in a prison hospital psych ward. He writes:
“I’m at the mental hospital now and a lot of way out things happen here and it’s like no one cares for anyone here and a lot of people here don’t even belong in prison because they’re so far gone. It’s sad they even got convicted when you can clearly see they weren’t ever stable. I find myself trying to help them and get yelled at by the cops to mind my own business like they thrive on their suffering. It’s disgusting. My toilet was broken for two weeks with piles of feces in it. I asked if I could eat my lunch in the dayroom cause the smells made me nauseous and they said, ‘No, I got to eat in my cell.’ I felt dehumanized like I was some kind of animal.” 

NAMI must promote treatment not prison. It must be a watchdog against criminal and inhumane care of mentally ill prisoners.

This is a big, overwhelming list. I didn’t even mention the need for supported housing, for supported education, and for mental health/illness practitioners. There are many moving parts that must be prioritized and synchronized. NSSC wants to work with NAMI to address these issues.

Photo of my son before our world came undone.

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About the Author: (Taken from National Shattering the Silence website ) Dede Ranahan established the Institute for Mental Illness and Wellness Education at Cal State Hayward, served as walk director for the first two NAMI walks in San Francisco, and was the first Mental Health Services Act Policy Director for NAMI California.

She also created the website, Sooner Than Tomorrow, A Safe Place to Talk About Mental Illness in Our Families. One section of the website publishes first person stories of families with serious mental illness. Another contains a diary that she kept from 2013 to 2014 not realizing she was capturing the last year of her son’s life. He died in 2014 on a psych ward where she thought he’d be safe.

Dede’s essay about serious mental illness, “A Canary in the Coal Mine,” is included in a new book, We Rise to Resist: Voices from a New Era in Women’s Political Action  available on Amazon.

The post Mother of Son Who Died In Psych Ward Asks NAMI To Do More. What Parents Want For The Seriously Mentally Ill appeared first on Pete Earley  

WHAT WOULD YOU DO? by Sherri McGimsey

Tomorrow, I have to go into a team meeting to discuss my son, Matthew, who suffers from schizophrenia. They want me to sign papers giving permission for them to start looking for a new placement for him. For my son and his beautiful mind. He has (for how many days?) been housed in a mental hospital ward, not the ideal place for your son to live but it’s the only place he’s been stable and safe for the past year.

After fourteen years of watching him suffer through depression, delusions, and overwhelming fear, (“Having a rough time“ — that’s what he would call the bad days) how does a parent do this? Sign their sick child away?

If you’ve never seen a young adult decompensate from schizophrenia, it’s like watching your loved one being tortured by his mind. You stand by helpless. Nothing you can do but love him enough to fight him to get the help he needs. I'm not sure if I’m brave enough to let him go after 53 odd hospitals stays, and five times tracking him down when he gets paranoid and does a walk-about. Will all the progress he's made, all the stability he's gained be lost?  

The only place they can find for him to live is far away. Too far for weekly visits, too far for passes on Saturday or Sunday afternoons, too far to cherish the few family moments this illness allows us. Moments others take for granted — to sit and relax, to walk the dogs, to just be with family.

Yesterday was the best he’s been in years. Finding a comfortable, safe, and caring place for him to live shouldn’t be so difficult. But it doesn’t exist — not for our children who suffer from serious mental illness.

So I sit here shaking and wondering if will we survive another calculated risk. Another shift that could send Matthew back into the dark of his illness. He fights the horrible betrayal of his mind, and I fight a system that is broken, and a world that really doesn’t understand the failure to help those who suffer with serious mental illness unless it happens to one of their own. 

I’m going to let this rest for now and enjoy the remainder of my day with our other son and his family. But tell me, what would you do if you had to walk into a meeting tomorrow and sign your sick child away? Would this broken system break your heart too?

 

Postscript:  I want to thank everyone who had us in your prayers and thoughts yesterday. You will never know how much that means when we're navigating the unknown of finding a forever home for our son with SMI. I would also like to say thank you to his team who has cared and worked to get him so stable.

I could not sign our child away.

There is no cure for schizophrenia. Stable is as good as it gets and I want Matthew this stable for as long as humanly possible. Sending you all thank you's, hugs, and love.

 Matthew and Sherri

Matthew and Sherri

A MOTHER'S DIARY by Dede Ranahan - GOING FORWARD

Hi Everyone,

I'm back from my blog break and posting more stories on Blog 1 (Your Stories) beginning tomorrow. My blog of Sooner Than Tomorrow - A Mother's Diary is completed. I'm leaving the blog (Blog 2) open for new readers while I research the best way to get my writing published. It's a daunting undertaking.

While attending a writer's conference, one speaker gave me this good news. She said (to the audience): "The publishing world is changing."
"If you're an unknown writer over 70, don't try to find a publisher."
"If you're an unknown writer of a memoir, don't try to find a publisher."
"If you're writing in diary format, don't try to find a publisher."
"If you're writing about mental illness, don't try to find a publisher."
"If you're writing about someone who died less than ten years ago, don't try to find a publisher."

Hmm? My writing checks all her boxes. What should I do? Give up? Go away? Write something else that means nothing to me? These are fighting words.

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I've lots to consider. If I self-publish, among other things, I have to buy an ISBN number, apply for a LCCN number from the US Library of Congress, hire a professional cover designer, hire a professional graphic designer to format the interior pages of my print book and/or to convert it to an eBook, possibly purchase an editorial book review, and register my book with the US Copyright Office. 

Then there's marketing. Posting my book on Amazon doesn't cut it. People have to know it's there. They have to be directed to it.

So I'm asking myself, what do I want to accomplish? I know I want my diary in finished book format per my original intent which was to leave a book for my descendants. Should I defy all odds and look for an agent/publisher? Should I publish my book myself? If you've read A Mother's Diary on my blog and you have any thoughts on this, please let me know. Your feedback will help me sort out what I should do going forward. dede@soonerthantomorrow.com

If you haven't read A Mother's Diary, it's still available on Blog 2. To read My Diary from the beginning, read the Introduction in the navigation bar above, then go to "Scenes from the Trenches" June 14, 2017, in the Archives on the right hand side of the blog page. To continue reading, scroll up in the archives from June 14, 2017. 

I didn't know, as I was writing, that I was capturing the last year of my son's life. In A Mother's Diary, his voice comes through loud and clear. However this goes, I'm grateful. In these pages, Pat will always be alive.

All my best, Dede

P.S. If you aren't subscribed to Blog 1, it's continuing. Hope you'll sign on. If for nothing else, for Happy Pics :-)

UPDATE ON TYLER by Kimberlee West

Our 19-year-old son is autistic with a serious mental illness but never mind that. Those facts are not factors within the Department of Justice. Tyler was sentenced to 20 months to 15 years. The judge checked 20 months — the minimum. Ty has already served 544 days. He will be transferred from jail to Jackson, Michigan prison. Once there, he'll meet with a parole board who will decide if he serves five months or 13 months or more.

Ty plead guilty to the home invasion (sleeping on our neighbors sofa) and a CS3 (third degree criminal sexual conduct in Michigan). There were no victim impact statements. None of the victims ever came to court. He will have five years of probation. He could come home in five months to one year and one month. He could be placed in a halfway house. There's no circuit court for mental health. There's no real treatment or help. There's lots of money involved and fines. Tyler had every reason to fight but dragging this out  could have added an extra year onto his sentence. It's exhausting when, as parents, we do our very best and it still isn't enough. We hope to God Ty survives prison. He's not a fighter. He's a sweet kid. 

The court gave us one hour notice, today, for Ty's plea. The prosecutor tried every trick including trying to renege on our deal of no more than 20 months for both cases. He tried giving Ty three more years. He tried to put Ty on the sex offender list. He was unsuccessful. We're thankful for our private attorney who stopped that with a statue and case law.  Even though the girl involved told the hospital nothing happened, our chances with the jury were slim. Juries usually don't vote "not guilty" for mentally ill people.

We need a law that says it's illegal to take advantage of a disabled, handicapped person. People used to understand what handicapped meant. Now it's politically incorrect and we call it an intellectual disability. Legally, this means someone knows better after 17 and can be charged like everyone else. Our attorney had a downs syndrome person sentenced to 10 years. This is what we've become. It's shameful. I've worked with kids with disabilities for over 35 years. They were born that way. Yet, for reasons beyond my understanding, the court doesn't recognize that. The burden should be on the prosecution to prove that disability was not a factor in committing a crime before the disabled person is charged with a crime. 

If my son were on drugs or alcohol, he'd get a break. If he were a vet, he'd get a break. 
If he were a violent offender, he'd most likely be released. The inmate, who beat Tyler up and knocked him out cold and then fired a gun at someone, was released from jail. Yet Ty's still there. 
He's simply seriously mentally ill. 

We haven't spoken to Ty since he left Muskegon. He's quarantined for 30 days. It's standard for entering Michigan prison. We have no way to contact him except by mail. We tried to put money on his phone and commissary accounts but were not allowed to do so.

Thank you from the bottom of our hearts to many of you. Thank you for writing letters, supporting us, and praying through Tyler's trial. We'd love to give bear hugs to every one of you who supported us. Your kindness is overwhelming. Please continue to pray for his safety and release.

 Tyler

Tyler

See more stories about Tyler by Kimberlee West. Click in the Archives on the right hand side of the blog.

August 22, 2017 - Walk A Mile In Our Shoes
November 15, 2017 - Hope One Day We'll Have Real Choices
January 12, 2018 - The Failure of Kevin's Law