(3- 9-2015 This is the second of three letters that I wish to share with readers while I am mourning the death of my father and carrying out his final wishes for his funeral.)
Dear Mr. Earley,
I too, am a parent whose son suffers from a serious mental illness: schizoaffective disorder. He has been ill 18 years, during which time, he has been hospitalized 15 times. Three of those stays were each one year long. I was told each stay cost an estimated $250,000.
Every time he was discharged, including the lengthy ones, he was released without medications, without housing, without support or a case worker, or without a follow-up doctors appointment. In two of those discharges (from California state hospitals), he was discharged without money, a personal ID, a coat or decent shoes in below 32 degree weather. The hospital staff had lost his personal items.
In one instance, he was released from Patton State Hospital in San Bernadino to the Los Angeles county jail, which freed him at 1 am – again without personal belongings, money, ID, coat or decent shoes. This was not only infuriating and terrifying but simply inhumane. He was released to the streets.
Fortunately, his incredibly kind public defender gave him $20 out of his own pocket and called me to let me know their “insane” discharge plan. The public defender suggested he go to the train station and stay there until morning by which time, I could arrange an e ticket for him.
Who treats people like that — especially medical professionals who are supposed to be helping an ill person?
Anyway – in the course of his untreated illness, my son was homeless for well over ten years. Those years were filled with efforts to keep him at home when we could – though his illness would steal him to the streets in an unending cycle.
He simply refused to believe he was sick.
When we could, we tried housing him in hotels, but his paranoia would drive him to sleep in the parking lots or under business awnings because “people had followed him there” and it was not “safe.” He eventually told us to stop paying for things he “couldn’t use.” His paranoia and delusions ran his life and only in the quiet of the night, living without walls or warmth, would a sense of quiet allow him to rest.
I am active in NAMI and I have done my part in calling for change. It is easy to become discouraged, as you noted in a recent blog, because the naked truth is that there really have been no significant changes in our system.
Addressing hospital discharge policies should be a priority – but that would assume that housing for the most vulnerable in our population would be addressed; and that medication availability and cost became a primary focus; and that case management actually existed; or that communication from staff to terrified parents was respectful or even existed; and that there was a way to get the police to pay for the damages to they do people while trying to corral them to “help” them… It would mean addressing, with a viable plan and available monies all the systems that tie together with frayed threads of some dis-connecting cord, a cord long ago broken and too long ago – ignored… hence the unending discouragement.
The encouragement comes in realizing that despite the tremendous odds against them, people do recover.
Today, following my son’s “last” (we are hoping) one year hospital stay, I’m happy to report that he is stable on an injectable medication. We are living the miracle we have prayed for over these 18 horrifying years.
Today he is delightful, thoughtful and interested in helping the world become a more loving and supportive place.
He has a dream now – one he has had for many years, but has been too cognitively disorganized and paranoid to see fulfilled. He wants to help others and is working in a field where he can do just that. (I don’t want to invade his privacy by being specific.)
My heart is overwhelmed with gratitude for where he is today — for where we are as a family today. I wish more than anything I could shout this story from the virtual roof-top of our global communication system: DO NOT LOSE HOPE!
I never thought this day would come for us as a family… but it is here. Tentative though it may be, I still rejoice in it daily – one day at a time.
Out of respect to his privacy, please sign me a loving and hopeful mother.
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