Parents suffer from feelings of guilt and powerlessness - feelings that are reinforced by the system's negative approach.
Anxiety is like an enemy
Lying in wait.
The paralysis of guilt,
When there is a need for will and action.
It was like living
In a house of cards on a volcano.
Anxiety, insecurity and
A crippling powerlessness.
It was our family's lot
That Death sharpened his sword.
No more decisions were needed
After Peter made the final choice.
Dreams and hope give way
To the nightmare of reality.
Doing battle with
The overwhelming chaos.
So much doubt, pain, shame and guilt expressed in so few lines.
The poem is one of many written by a mother during her and her family's remorseless 21-year fight against her son's schizophrenia.
It was a fight with no winners when in 1991, at the age of 21, her son took his own life.
The mother, Alice Sørensen, has described those 21 years in her book "Peter's fight, seen through his mother's eyes". A nakedly honest book which, says its authoress, "I hope can be used by other parents, politicians and professionals so that together we can create a better and more constructive partnership between the parents of children concerned and the public care system".
That lack of partnership was one of the hallmarks of Alice Sørensen's experience during the 21 years.
The system knows best
"Peter was first diagnosed as suffering from schizophrenia when he was 18 years old. However, even when he was very young his behaviour was violent and antisocial. But the kindergarten did not tell us about Peter's problems. We found out quite accidentally.
"Nor did his school inform us about the difficulties they observed. They simply tested Peter without telling us."
A decision was then taken by the social welfare department - without any parental consultation - that 10-year-old Peter should be placed in special care.
The system knows best.
"That lack of partnership went on throughout the years - in the psychiatric system as well, after Peter was committed as an 18-year-old. In the three years that followed, he was in and out of psychiatric wards. Time after time he was released without help or support. And not only that - it was only after a long fight that they agreed to ring us up when he was released, even though they knew that Peter had threatened us and attacked us.
We wanted to be involved
"All through the years we had to battle to arrange discussions with the psychologists, social workers and psychiatrists. We wanted to understand, we wanted to be involved, because we wanted to help. Because we loved our son.
And when we finally succeeded, we gained the impression - with few exceptions - that the system saw us as bad, rather stupid and irresponsible parents without the necessary resources to help.
"That's not what you need when you are already suffering from feelings of deep guilt, self-blame and powerlessness and are almost screaming out for help.
"I realise now that I used the aggressions I had then against the system - against the people involved in my son's treatment as a crutch for my own insecurity and intolerance. And that, to a degree, in using the system as a scapegoat, I was trying to deflect the blame from myself. But I wasn't successful.
Success at last
"We finally achieved a good partnership with the staff in Peter's psychiatric ward but it is not right that you have to fight for that. As parents of a child suffering from schizophrenia, you are in an incredibly vulnerable situation. You don't only need help in dealing with your feelings of guilt; you also need answers to all the inevitable questions - questions about the illness, about treatment, about what you can do as a parent, and so on.
"The system only gave us very partial answers to our questions. We found that the biggest help came from the parents of other children suffering from schizophrenia.
Listen and help
"I do not believe that either a more effective partnership or any other efforts could have prevented Peter's suicide. The burden and suffering of his illness were too much. But the 21 years would not have been such a burden for his family if the system had met us half way and helped us," says Alice Sørensen.
"So: Listen to patients' relatives and help them. And, if nothing more, at least make the time to talk to them."
Reprinted with permission.
Internet Mental Health (www.mentalhealth.com) copyright © 1995-2011 by Phillip W. Long, M.D.