Mommy, please don’t ever let that happen to me again

Over the course of my journey trying to make sense of the American mental health system, I have encountered stories from consumers and families that haunt me.    This particular friend is someone I’ve known for about 15 years – and it wasn’t until late last year that I learned about her daughter.  I am going to honor their stories in my accoglienza blog. Susan is the first person I’ve invited to share her story.  As the story unfolds, I’m going to “sidebar” with references back to the WHO-recognized Trieste model to show what our system could learn from the Italians.

I am sharing this with a specific intent to target readers who ask me all the time, “what is the failure of our American mental health system?”  People genuinely want to know what they can do to help.  If you are not ensnared in this system – either as a consumer of services or as a loved one – it is hard to fathom how broken it is.  My hope is that these stories help to inform lay people and that they will add their voices to a chorus for change.

My daughter’s journey into the dark abyss of mental illness began a little over twelve years ago when she was 16.  Initially, we thought it was teenage rebelliousness,  but that quickly changed.  Her diagnosis has varied over the years but currently is schizoaffective disorder.

At 17, after numerous involuntary hospitalizations, she was placed at Resnick Neuropsychiatric Hospital.  On her behalf, they fought our private insurance company and kept her for three months.  During that time, she stabilized, kept up with schoolwork and went on to walk the stage with her high school graduating class; it seemed life was good again!  

By 18, no longer a minor, she stopped taking her meds and went on to many more hospitalizations. 

She resorted to violent behavior and was arrested for assaulting several police officers.  We fought the case for a year and ultimately had it reduced to a misdemeanor and probation. 

For the next ten years, she cycled in and out of homelessness and hospitals, both involuntary and voluntary.   On January 18, 2018, she attempted suicide and was in a coma for four days.  When medically cleared, she was placed on a 5150 hold and then transferred to a behavioral health facility.  Within 48 hours, she was discharged to me with just an appointment slip, but no one to follow up to make sure she kept it. This after a suicide attempt and a long history of mental illness!   

Her condition continued to deteriorate.  A few months later, she was placed on another hold.  Her private psychiatrist and I both called the hospital to request they not give her one specific psychotropic drug as she responds very badly to it.  The hospital ignored our request and administered it anyway. 

The day she was discharged, she threw herself in front of a moving vehicle and was put on another hold.  She ended up in a different hospital.  Shortly after that, at another facility, they again ignored the request and prescribed the same medication.  They discharged her with a bus token and she disappeared until her next 5150. 

Assisted Outpatient Treatment:  Good idea in theory

In October 2018, I referred her to Assisted Outpatient Treatment (AOT)  for Los Angeles County and she was accepted.  Finally!   I thought  this would be the answer.  But at the time she was accepted, she was missing.  She was gone for six weeks, and this was the first time she was gone so long.  Those of you that have gone through this know what our family went through.  Every day and night, I drove around the places she might frequent.   I befriended our homeless neighbors and passed out cigarettes and/or dollar bills desperately trying to find her.  I had glimpses of hope – someone spotted her or she checked into the gym to shower every couple of weeks.  At least I knew she was alive at those moments. 

I learned later that she had attempted to make an appointment at a mental health clinic in downtown LA.  She was told to come back in three weeks.  Somehow our system cannot or will not flag someone who has been in and out of institutions over and over as someone who needs an appointment. Now.

She finally came home in mid-January, 2019.  She was so disoriented, coming out of psychosis, and didn’t know exactly where she had been or for how long.  She told me she had been beaten and raped twice.  She was dirty and malnourished and she said “Mommy, please don’t ever let that happen to me again.”  And I swore I wouldn’t! 

This year – in 2019 — she has been hospitalized eight times; three voluntary and five 5150s.  Three hospitalizations occurred just in October – totaling 115 days for this year.  She continues to decompensate. 

For every mother reading this:  put yourself in my shoes.

On her most recent hold , she was found on the sidewalk in downtown LA – naked and burning herself with a lighter.  Just prior to that, she was placed on a hold for spitting at a police officer.  I was surprised at this behavior because we have family members in law enforcement, and she respects them.  When I asked her why she did that she said, “I thought if I got arrested and put in jail, they would have to help me.”

My daughter is crying – no, she is screaming — for help! 

Conservatorship.  Walk a mile in a mother’s shoes.

For the past three years, I have been trying, unsuccessfully, to have her conserved.  Convincing a treating psychiatrist has been nearly impossible.  Over this past summer, on two separate occasions, she was in the psych ER for two weeks and we missed the window with the Public Guardian’s office

After this most recent hold, I called everyone that would listen.  What does it take?  How bad does it have to get?  Suicide attempts apparently aren’t enough.  Will five 5150’s in nearly as many months be enough with a history of close to 50 overall?  Will being naked and burning yourself be enough? 

I’m outraged by the arguments condemning an LPS Conservatorship levied by those who have not lived this nightmare as a parent.  I am saddened by those who do not support a redefinition of “grave disability, ”  which is the standard by which a judge will grant a conservatorship.      

”We don’t want to take away people’s constitutional right,” they say.   Living under a bridge and eating out of a garbage can is apparently acceptable – but I have to ask:  how many of those who fight against involuntary treatment under the care of the Public Guardian have lived this nightmare as a parent? 

As a parent, this is what I say:  What about the human right of my daughter to be healthy?   To get desperately needed care?  To have the opportunity to lead a fulfilling, productive life? To not fall through the myriad of cracks in our failed mental health system and die? 

My daughter deserves those rights!  She said “Mommy, please don’t ever let that happen to me again!”   I ask, no beg, please help me to never let that happen to her again.

16 thoughts on “Mommy, please don’t ever let that happen to me again”

  1. Kerry,
    Thank you for dedicating your life to helping others. Thank you.

    Would initial changes need to be made at the county, state or federal level?


    1. Lorena – these are good questions! I am still trying to comprehend the interlayering of laws and policies at all levels of government that work to frustrate caring for those living with a mental illness in our midst. But I will say that in the TRIESTE pilot planned for Hollywood, we will be showing what it would be like if services provided by the local mental health center could be budgeted on a per-capita basis — and not tied to a medical model where the only services that can be provided are those that can be billed to Medicaid. So, in that sense, a reform effort in this country would require acknowledging how Medicaid limits providing “whole person care.”

      Another federal challenge is a rule called the “IMD exclusion” which contributes to the shortage of beds in our county (and most counties in America) for inpatient psychiatric care, because Medicaid will not reimburse for an institution that provides more than 16 beds.

      Finally, to let families, friends and supporters remain connected to people — instead of being siloed because of HIPPA privacy laws — will require a robust review of exactly what HIPPA allows and prohibits. There is a sense that the HIPPA defense is raised as a matter of course (and recommended by risk averse lawyers) when, in fact, there are ways to keep someone connected to their loved ones during times of crisis.

      I am grateful that LA County Dept of Mental Health is willing to chart a new course forward in the TRIESTE pilot. Let’s see what we can learn.

  2. My first experience with homelessness in 2011 in Los Angeles was coincidental with falling through the cracks of the system at Hollywood Mental Health. In a manic episode I used arrests and jail alternating with ER admissions and psych hospital stays as temporary housing because I was afraid of sleeping in the parks or staying in homeless shelters.

    I finally stabilized between Kaiser’s psych unit and was discharged to a sober living home from Gateways medical center. I stayed sober and got re-connected to Hollywood Mental Health again only to have my psychiatrist encourage me to try marijuana for joint pain I was having from arthritis which caused me to have a psychotic episode at work and I was fired.

    So now, facing homelessness again, I ended up in North Hollywood in 2014. I was suicidal because I DIDN’T have parents who truly cared or understood what to do. I had no place to live or a way for me to support myself. I have had to fight the system on my own and come up with creative ways to survive. Look for my book in about a year, “Hard Pill To Swallow: My Manic Memoir”

    1. Mark, your story underscores all the obstacles along the way where people are left to their own devices to “figure things out” on their own. Its impossible. While in Trieste in March, I wrote a blog called “We’ll Catch you if you Fall” that featured the Mad Men image of the silhouette man falling. They will not let that happen to users of their system. There is a sense of accountability that does not exist in the American system.

      I continue to be amazed at your resiliency, and I cannot wait to read your book!

  3. So painful to read this and to know that this is a case where a family really cares and wants to help. What will it take until we realize that we have to help families, not become a stumbling block and yet another hurdle for them.

    1. Well said, Caroline. My heart grieves for what these families are going through. We have to show there is a better way forward in the TRIESTE pilot in Hollywood.

  4. Thank you, Susan, for sharing your story and thank you, Kerry, for highlighting the horror of the #California mental health system. Much of this story, is my story. The early diagnosis and success until the age of 18 and then falling off the cliff. The only difference has been luck and heroics. Lucky to have gotten my Danny conserved 19 years ago. Lucky it has continued. And, heroics on his part for surviving years of suffering in spite of the conservatorship. But, he has survived. Bravo, to mom for going to the mat! I am with her!!
    It should not have to be so hard to help desperate families!

    1. Teresa, wow.

      “Luck and heroics.” These are concepts that the Italians would find utterly confounding.

      I cannot tell you how many times people have said to me, “why did you have to go to Italy to find a better way to do this?” That question seems grounded in an ethnocentric view of the American mental health system. What could we possibly learn from another culture?

      Asked in a different way: name one country that has come to the US to learn from our “best practices” on how we treat people living with a mental illness in our communities.

      Teresa, you are a rock.

  5. Thank you for highlighting the difference in our systems! I have been working since May to help get my brother into a dual diagnosis residential program after a particularly scary episode. It’s been such a struggle (and he actually wants help), with people giving us wrong information and MediCal botching up a transfer of care to LA County delaying his ability to enter program I found that I can afford. I just want to scream “This is life and death!” On Monday we find out if the transfer did indeed go through (after nearly four months of waiting for something they told us would take 45 days) and if it did, we still have to hope there is a bed available for him in the program and that he passes their assessment. We also don’t know the quality of the program – it’s just what we can afford and we’re hoping whatever they offer will be the thing he needs to finally get his life on the track he wants for the first time since he was diagnosed nearly 10 years ago. As a family member, it has been heartbreaking to watch his promising life take a dive and have so little ability to help him when he hasn’t been in the state of mind to deal with the paperwork and bureaucracy of getting treatment on his own.

    1. Staci — this is mind boggling. Similar to my other responses in this thread, our system in America does not accept responsibility for the care of a person. People are left to figure things out on their own, and families, if they are allowed to participate, are equally confused and roadblocked if they try to help. From the outside looking in, it seems like a Twilight Zone experience. I cannot even imagine what it must feel like in your shoes, and particularly your brother’s shoes. In the Trieste model, also, they hold in high regard a person’s life plan — and they partner with the person to take the steps to achieve their goals. We don’t even begin to address purpose and the right to a meaningful life in the American system.

      I would like to follow this story. Maybe this can become a guest blog also.

  6. Kerry, thank you for all that you do to not only bring awareness to our broken mental health system but to offer real, possible solutions. I remain hopeful!

  7. This is beyond heartbreaking and horrifying. -Thanks for sharing and keeping up the good fight to help families keep their loved ones connected in care against dehumanizing forces. Homelessness reflects both the brokenness of our system and also its progressive soullessness. I pray the Trieste model will help exorcise these institutional demons that are wreaking havoc upon our common humanity. A system that uses confidentiality to prevent loving families from having involvement in their child’s treatment and recovery when that child’s mental affliction is blatantly apparent to the whole world has lost its way. What’s more – it has itself become not only insane but oppressively so.

    1. Paul. I love your words.
      Dehumanizing forces.
      Institutional demons.
      Progressive soullessness.

      The American system is oppressive. Grateful to have your voice. We still have much to do.

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