Jack Rosberg, Ph.D.
I am pleased to introduce this Newsletter/Case History written by Pam Duncan. I have been corresponding with Pam for a considerable period of time. We have discussed the case of Max with some frequency. When I met Pam in Cape Town, South Africa in July of 2000, I found her to be a woman of great sensitivity and her commitment and devotion to Max was obvious. Also, I was impressed by those people on her team who assisted her in the care and structure of the treatment of Max.
I met Max in Pam’s home, where he resides and was pleased to see the amount of energy expressed by Pam and her family to help normalize the life of this individual who spent so many years being institutionalized. This treatment form, its location, is not unprecedented but it is very unusual and I could see the effect it was making on Max’s life. This is an ideal situation however; it does indeed take some very special people to make it a positive experience for people like Max. It is a corrective emotional and relational atmosphere and experience that I believe will make Max’s life a much happier existence and certainly help him on the path to recovery. Even though he may not fully recover, it is my considered belief that he will be able to lead a productive life.
I have the greatest respect for Pam Duncan and her staff. We need more people like them in our profession. People who are willing to help remake the life of a person like Max who has undergone such severe pain and deprivation over the many years of his incarceration. This certainly is one of the better ways to do it.
“He was a Back Ward Boy”
Introduction and some thoughts:
Western society demands perfection, ironic is it not! By the very nature of our humanity we are imperfect! It is this society who labels, (you are schizophrenic) marginalises and stigmatizes, and allows a sick, frightened person to be locked away and forgotten about for half a lifetime. Two decades in a time warp. Not only have there been ecological, technological and social changes, friends, relatives and acquaintances have grown old, lost interest, and some have died.
The human abuses within the institution, together with the demands of the illness provided coping skills, and most likely a now deeply entrenched delusional system. (forgotten about and left unchallenged?) Lost in a system and easy to control with medication and lock up facilities when the terrors of the illness overwhelmed, and there was a need to protect self.
But, the institution was survived!
Question: Why should a person, two decades later, and now further damaged by the iatrogenic process of the institution trust anyone? Unfortunately the institution did little or nothing to prepare for the re-integration into 'society'.
I have been Max's 'home maker' for twenty months. I am by profession a trained nurse but my post basic specialty was not Psychiatry. The university of life richly provided me with the skills I felt were needed to take up the challenge for this pioneering work, viz. the process of de-institutionalization, for which there is no model in my country. Good common sense, a long fuse, compassion, coupled with a deep respect for the humanity of the sufferers of this complex illness and a huge belief in what I am doing plus an understanding of the illness have been my 'academic' tools.
Max - (with exerts from my diary in italics)(the early months of 1999)
We have come a long way in a short time. 24 months ago Max & I had not even met.
He told my husband, who was the first to meet him, that he enjoyed company but had few visitors. We started visiting him fortnightly.
Max was been institutionalized for 18 years at the age of 21. It was a big decision for me to agree to become a care -giver to someone who has been "marginalised" for all these years. It took me many months to weigh up the pro's & con's but once the decision was made there was no going back. I made a decision to accept Max as he is now & with all that is in my ability, strength & wisdom, help him to achieve his potential. Deep down inside I have faith in Max and, with God's grace I will enter this pioneering field. Max was described to me as being "chronically mad".
Three weeks into my new career my observations are simplistic. London has four seasons in one day Max has four times four on a bad day. In between all the chaos of his fragmented psyche are pearls of wisdom & insight into "our world," which are a delight .
*the institution is a finishing off school for boys
*Too many cooks
*the healing properties of the sea
*on seeing topless bathers at the beach – "they did not do that in my time"
* Stacey (my daughter) drives as though the road belongs to her
*after his first hair cut, 'this is a first step of my new image before leaving the institution'
*Coral, (a friend of mine) beautiful, a special person, is within herself.
*you have saved me.
*I cannot cry like you, I cannot feel like you, my spirit has been broken at the institution
I will never be presumptuous & assume that I can achieve the impossible. I am doing what I can in what may be a very "unorthodox" way. Having said that I am doing for Max what God has given to us. When he is dead inside I pick fragrant flowers from the garden & I say, smell this. I approach his senses because although he may feel dead, those parts of him need to be re- kindled. I use aromatherapy oils. We have birds, fish, cats & dogs and music on all day long. Even Mr. Bean has come to the rescue & uplifted spirits!
Every morning I hold his hand and I apply affirmations to his being. I say, "you are a real person, you have feelings, you have emotions, you have a soul, you have a body & spirit. You will never be alone again. We are a team you are the most important part of the team. Each day we are going forward together" (the gremlins and ghoulies are constantly gnawing to get out and be heard. It is sheer hard work to maintain a constant level of energy to distract.)
I know that with Max, distraction is a good idea when he is at his worst. ( I am most sympathetic when the voices torment him but I draw the line at verbal abuse) I take him with me to the convenience stores and a nearby tea garden & even with a bit of huffing & puffing he can be contained & has not let himself down. (the vitriolic was directed towards me today and I was the one going to hell. I had to mobilise my shock at being the target, before I planned my strategy)
The abbreviated version of this is that with Gods grace & the knowledge I have gained I will do my best for Max. He knows that we can only do this together.
From being a not very trusting, defensive and often offensive person, who was and sometimes still is whatever his hallucinations and delusional system allow or command him to be Max has progressed. A huge part of his pain (viz. to be a part of a family unit) is echoed through his now deeply entrenched delusional system.
There are real life issues which have impacted significantly on him. He went to boarding school from the age of 7 years and a simple calculation concludes that he spent 32 years out of 39 in some form of institutionalised care. I wonder how many surrogate mothers he has had?
From being a very 'dead' person when he left the institution he has regained a 'life form'. He is learning inter alia to give an opinion as opposed to the 'no' followed by a very hostile look. He is re- learning social skills and some very basic niceties. He has re-learnt to interact with animals an instinctive process for a child raised on a farm , but a process lost as the demands of the illness , within an institution, began to erode his life skills.
I see a person, who on a daily basic is more spontaneous, less apathetic and certainly much happier- a person who is trying very hard.
When I first met Max in the ward of the institution, I did not feel challenged or stimulated. I saw nothing there to nurture or encourage a broken spirit. Medication time reminded me of Jacques Brel's "NEXT."
I concluded that he had spent 18 years feeling helpless and sinking further into hopelessness.
This morning auditory hallucinations occupied a good hour of Max's time. When I sat at the bottom of the stairs and told Max that he need not be frightened any more, he replied that I must not be afraid! He went on to say that he was angry with himself about something which had happened in the past. I assured him that we all make mistakes and that he must not be too hard on himself. The interaction between us was quite different to previous occasions. Max has moved beyond the terror of the symptoms of the illness. There seems to be a new picture developing.'
As long ago as April 1999 I had noticed that confrontation, compromise ( not couching ) distraction of illness directed behavior, and tough love were the successful combination of behavioral tools which worked. Huge dollops of human kindness and a very long fuse completed the 'formula'.
Max has learned to distract himself from the torment of the auditory hallucinations. (he refers to them as the house of commons or the little rascals )Max has replaced some of the lethargy of old with spontaneity and enjoys a full week of activities.
Max has learned to control negative impulses and Max is encouraged to make decisions, albeit it simple ones and to answer the telephone and make calls. He is able to complete simple shopping tasks without me, at a nearby convenience store.
This story is about Max's journey and there is still a long way to go. I am his narrator until he can continue his story without me.
My life has been enriched by his experience.
P. H. Duncan