My name is Jeanne Gore and I'm the President of Families for Treatment of Serious Mental Illness, or TreatSMI for short. More importantly, I'm a mom whose son has been hospitalized 42 times in the last 14 years. He's been beaten by seven police officers in Burlington, Vermont, homeless, missing, jailed, and on and on...
I have a blog called "My Struggle for Gabriel (not his real name)" http://mystruggleforgabriel.blogspot.com where I have written sporadically over years about the never ending struggle to get help for my son. Here is an entry I wrote in February:
February 13, 2017
I'm sitting in my home on the eve of Valentine's Day thinking I should feel grateful that my son is in #ABedInstead. Instead, I am devastated. He was taken to an emergency room last Friday and then transferred to another emergency room with a locked unit for those, like my son, who are suffering from a psychotic disorder because the psychiatric facility didn't have a bed available.
I went to visit him yesterday. A nurse met me at the door and led me to his room. The room was completely stark, with white walls, a gray chair, a tray stand with some food on it and a hospital bed where my son was lying face down.
He didn't speak at first so I began speaking, trying to fill the void. He looked exhausted and just plain beaten down. I wanted to hug him and tell him how much I loved him. I told him how sorry I was that he was there and tried to reassure him that he would get his meds adjusted and be home before he knew it.
He became agitated when he asked if I could take him outside to have a cigarette and I apologetically explained that I couldn't because it was against hospital rules. The nurse decided that was my cue to leave.
All the way home and ever since, all I can think about is how angry I am that we couldn't have gotten adequate treatment for my son early on to prevent this from happening to him anymore. He had insight 41 hospitalizations ago, but instead he was allowed to go through that revolving door — in and out of hospitals that never kept him long enough to stabilize him, homeless, jailed, etc....
I fought long and hard for AOT (Assisted Out-Patient Treatment) laws and better commitment laws in Maine where we live and finally we have them, though there is still tweaking to be done. My son does have AOT now, thankfully, so we no longer have to wait for him to become a danger to himself or others before we can get him to a hospital, but, after suffering 12 years without real treatment and loosing too many precious brain cells, I fear he will never have insight again.
I live in a state where we also have gravely disabled and need for treatment standards, but no one uses them because there aren't enough beds. We know that CIT (Crisis Intervention Training) for police officers saves lives but many of our officers are not trained. Police departments in Maine can't afford the training program along with the cost of having to pay officers overtime so that each officer can take the 40 hour course.
We've expanded our forensic hospital and our mentally ill are filling up our jails. Meanwhile, our treatment providers are struggling with a state that wants to cut the pay of their psychiatric nurses by 40%. Does anyone else see what's wrong with this picture?
If we were able to treat people with serious mental illness, they wouldn't continue to go through revolving doors — in and out of our hospitals — and we wouldn't be arguing over the budget. We'd be saving money and, more importantly, saving lives. My son deserved so much better and every person suffering with a serious mental illness deserves so much better.
Today I read of patients being shot in hospitals, patients being sent to jail because there are no beds, Oregon talking about passing a law that would allow them to starve their mentally ill and those suffering from dementia to death.
We can't allow this to continue. I don't know when this country lost its human decency towards its most vulnerable citizens, but it surely has. I say we need a revolution and we need one now. We need to organize ourselves and protest all over this country immediately. We owe it to our children and their children to provide a country where ALL of our most vulnerable are treated with love, care, respect and compassion.
Hence, the idea for the Shattering Silence March on May 20, 2017, was born. This march will be the first step in Families for Treatment of Serious Mental Illness efforts to truly bring treatment before tragedy for all who suffer from a serious brain disease. Will you join me?
To learn more about the Shattering Silence March go to www.shatteringsilence.org
Families for Treatment of Serious Mental Illness (TreatSMI) is a non-profit organization whose mission is to advocate at the federal, state, and local level for treatment, programs, services, housing, and care for those diagnosed with serious mental illnesses, and to provide support and education programs to families and caregivers.
TreatSMI is the only US based national organization that pertains exclusively to serious mental illness, rather than mental illness in general.