My Shattered Daughter, My Love! Written by "a Mom" from Lexington, KY
The morning my sixteen year old daughter’s doctor called to tell me she had schizophrenia, will forever be burned into my mind. My life dissolved into a blur … of grief, anguish, fear, bewilderment and finally rage. She was a wonderful daughter, bright, kind and mature beyond her years. Her future had seemed bright. Researching everything I could find about her illness I read of horrible suffering, shattered lives, lost potential, homelessness, drug addiction, imprisonment and death. I read of shattered families, pushed to the brink, forced finally to abandon a loved one to their fate. Not my daughter, I vowed. NO. Never. Only over my dead body could this damned disease have my sweet and gentle girl. I put all my faith in the medication and waited for it to take effect, but she was rapidly going downhill. The delusions became stronger. The voices were demons tormenting her. More medications were tried, but nothing helped.
I tried, on her doctor’s advice, to get guardianship for her. I was denied. The ruthless voices intensified, endlessly screaming and tormenting her. She became increasingly confused, and forgetful, leaving food cooking on the stove. She would disappear, sometimes for days. Clozapine, an antipsychotic that often works when other meds fail, came to the rescue. She became hallucination free for short periods. Her obsession with religion abruptly stopped.
Her senses told her she was possessed. How could taking a pill help with that? She could hear them and feel them. How could she possibly trust anyone who said they weren’t there? No one understood her. She stopped going to therapy and stopped taking her medications. Instead, she began to self-medicate with alcohol and illegal drugs. She was an adult and I had lost all control. Seven hospitalizations followed over the next year. She wanted help … yet she lacked insight to her illness or the ability to follow up for treatment outside the hospital.
Next came the group home. It seemed like the answer to a prayer. My daughter needed supervision and I wanted her away from the bad influences on the street. I quickly realized my mistake. She was constantly criticized there, for not doing her chores on time, even for the clothes she wore. Her lethargy, forgetfulness, and lack of organization were interpreted as spiteful behaviors, not symptoms of her illness. The promised help to get her to appointments turned out to be a bus pass! The director stated, “My schizophrenics are all very smart and manipulative.” I found this ignorance disturbing in people who were supposed to be mental health professionals. They decided to evict her in spite of desperately needing help. The director stated, “It is my job to make sure she doesn’t die on my program.” It was not the only time someone would promise to help her, then, when the seriousness of her problems becomes apparent, back off and blame her.
I wanted my child back under the care of the doctor she’d had through adolescence, who had given her a measure of stability. She liked and more importantly trusted him. He had a way of getting through to her, but her Medicaid would not cover it, and she would not keep her appointments with a doctor at Comprehensive Care, nor would she take her medications. Yet again, she was hospitalized … this time at Eastern State.
Then came the expected downward spiral of her life, the self-medication, living on the streets and being raped twice! On a friend's advice, I had her admitted to Our Lady of Peace in Louisville. It had a long-term program for co-disorders; mental illness complicated by substance abuse. I hoped this time would be different, that they could engage her and somehow make her see she needed treatment. I prayed that she would be there long enough for treatment to begin to work. I knew how much she had suffered and hoped that she had finally had enough. She called within a week…demanding that I come get her.
One bitterly cold night, she left in anger, intoxicated. I knew that if she passed out outside she would freeze. I would rather see her arrested. I called the police. I was told that there was nothing they could do. She had the right to be as sick and self-destructive as she chose…whether she was able to make that choice or not. There was nothing I, nor they, could do. It seems Kentucky's policy on mental illness is almost as effective as Adolf Hitler’s.
Life at home was chaos. My daughter stopped making any effort to be a part of the family or to help out. She broke windows and doors and punched holes in the walls. Twice, she was arrested for shoplifting the alcohol she frantically needed. I tried tough love, although I doubted she had the ability to comprehend that her circumstances were the result of her own actions. I told her to leave.
Soon, my daughter was arrested for probation violation from the shoplifting arrests. Relieved, I hoped she would be court ordered into treatment. Yet instead, she spent two months in jail!
She was released in far worse shape than before. She truly believed she was surrounded by angels and demons .... and that I was a demon, and there was a man burning in hell right beside her. Another trip to Eastern State resulted in her being released, just a few days later. She attempted suicide. After two days in intensive care, she was sent back to Eastern State Hospital.
Insanity, I have heard, is doing the same thing over and over yet expecting different results. By this definition the system is insane. My child has had nineteen hospitalizations and four arrests and is sicker today than before it all began. It is a waste of time, money and resources to keep hospitalizing her time and again, and then releasing her, still as psychotic and symptomatic as on admittance. I vote to just give all that money to me and I will retire with her in the Bahamas. At least someone would benefit from the money wasted.
As I write this, my daughter is in jail and I do not know what will happen. Tough love failed … she is too sick and too suicidal for it to be effective. She has given up and simply does not care what happens to her now. And me? I am far closer to giving up than I ever imagined possible. The reality is that there may be no chance for her. If the pattern now set continues there is not. Her life is a living hell, a nightmare even Stephen King would have trouble imagining. The hospital cannot hold her or force her to accept treatment unless she is an imminent danger to herself or someone else. She has learned to lie about that. At 24, she is trapped in a vicious cycle and with no way of keeping her in treatment, nothing will change. If nothing changes it will end in tragedy. Then when fingers are pointed and blame placed, it will be too late.
I miss my daughter. She has been sick for a third of her life, but I still cannot accept what has happened; nor understand why it must be. I tried all I know to do, even giving up, but finally, I am unable to give up hope no matter how hopeless it seems. We need a miracle, and I cling to the hope that it is not impossible, and that one day she can have peace, and sit in the sun and hear only the wind.
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