Sheila

SheilaI was born into a very loving family consisting of six girls and two boys, I am the youngest. We had a very normal happy life but not too many luxuries as you can imagine, but there was a lot of love. Mum and Dad had their own worries in life with two daughters with disabilities. Mum had German measles when pregnant with one of my sister’s; consequently my sister was born deaf and has never learned to speak. Another sister developed chronic epilepsy.

The worries that my parents had back in those days with my two sisters never seemed to affect the way in which they went about their daily lives. They were very kind and caring people and were always out to help others in need. So as children we had excellent role models.

I married at the age of 18 and had my first son at the age of 19. I wanted to follow in Mum’s footsteps and have a large family, I always said that I was going to have ten children but this was not to be.

My second son came along four years after the first. I started to think that maybe I could not have any more children. My second child was another beautiful boy and it was this little one, who was going to change my life forever.

My second son had a very normal childhood, he was no different to any other child, played soccer, rugby league, participated in public speaking, debating and had extremely good grades at school. I felt very proud of him as any mother would.

When my son reached the age of 13 which is a difficult time for most young people, his Dad and I parted company. It was a terrible time for all of us. My two sons were shattered, the family unit was breaking up, and my eldest son was in the middle of his HSC examinations, this was not a good time for him either.

There would be times when my youngest son would just crawl under the dining room table and sob his little heart out, and my eldest son would say “just leave him there Mum, he will be OK.” The guilt that I was feeling was unbearable, my beautiful boy was heartbroken. In turn there were times when I needed consoling, and it was this dear little boy that sat beside me on the edge of the bed when I was reading letters from solicitors, that he would put his arm around me and console me. He would pull letters from my hands and say “Mum, you are not reading these letters any more.”

The three of us managed to get through this very difficult time with the help from family and friends. My boys then became my life, I was determined that they would still have a loving home and a good education, but it was a struggle both emotionally and financially.

Then, I met my now husband and best friend; we were married seven years later. It was during these times that we noticed my youngest son started withdrawing from us. This was especially noticeable during meal times. He would excuse himself and take his dinner into his bedroom and say that he needed to do some study. I accepted this, but deep down I felt he was upset that I had found a new love and was trying to get on with my life. The days started to become more and more difficult. My son’s attitude towards me started to become quite hostile, no sooner would I arrive home from work and he would find any reason to begin an argument and upset me. Our relationship was starting to deteriorate. He finished his Higher School Certificate but only just managed to get the mark to pass. He didn’t know what he wanted to do as a career so I told him that whatever he wanted to do I would support him in his decision.
His first job was a mail boy for an insurance company. After a while he started to tell us that other people in the mail room were picking on him and how unhappy he was because he didn’t feel that he fitted into the work group. He left this job.

It was during this period that he would tell us stories that he claimed happened on his way home from work. He felt that everyone was staring at him as he rode home on the bus. On one occasion he mentioned to us that he was eating an orange on the way home, and because he was eating the orange the person sitting opposite him started to cough uncontrollably, and he felt that he was responsible for it. Strange stories like this became more and more frequent. We always tried to rationalise his behaviour and tried to assure him that no one would be staring at him for no apparent reason.

The next position that he held was as a salesperson selling computers but this did not last long either. He then had another sales position but once again he lost that job because he was told that he was not suitable. It seems obvious now with the benefit of hindsight that things were starting to deteriorate. We just did not realize what was happening and put it down to typical adolescent behaviour.

We did not know what to do, so I finally said to him that if there was a training course that he would like to participate in, I would find the money so that he could complete it. He chose a course and decided that he would like to be a Travel Consultant. I borrowed the money and he was enrolled at a business college. After a period of time he started to tell us that the other students in the class were talking about him and when he was out of the room they would scribble and write things in his books.

I felt quite upset about this because I had to borrow $3,500 for the course, so I called the principal of the College to complain. She told me that the College would not put up with this kind of behaviour, so she would investigate the matter and get back to me. The teachers and students at the College were interviewed and soon after I received a phone call, it was not the phone call that I wanted to receive. She said the teachers at the College were quite concerned about him and that these things were just not happening. She continued to say that my son was surly and morose and that I should be very concerned as well.

He stayed on at the College and did manage to get his Certificate, so then it was time to obtain a position in that field of work, but this never eventuated.
 
It was during this time that my dad became quite ill. He was, for some reason, always worried about my son even though I had never told my parents what was happening with him and all the trouble that I was having. I can remember so well on numerous occasions dad asking me if he okay and I would reassure dad that he was, I know in my heart that he knew somehow, that something was not quite right. My son loved his grandfather, and he used to step in on occasions and take the boys to soccer or football or even just be there to support them. In 1991 after a long illness dad passed away, I often say I am so glad (in a way) that he was not around when my son became mentally ill.
 
In 1993 I decided to get married and my son still had not found any work. He was keeping company with an old school mate and I knew in my heart that this was a person I did not want him to associate with, but I also knew that if I interfered too much, I may lose any relationship that I had with him.

I kept encouraging him to get a job but nothing was happening, he was sleeping in a lot and seemed not to be even trying. I left for my honeymoon and we were gone for 2 ½ months overseas. My son’s dad promised me that he would call him regularly and encourage him to find work. By this time my eldest son had moved out of home.
On returning from our Honeymoon I learnt that wild parties had been happening and still he had not found employment. We discovered that his condition had deteriorated whereby we found in his bedroom the air vents in the building wall, had been covered over, and the carpet had been pulled up to reveal old television antennae wiring, that my son claimed was being used by people next door to listen to his thoughts. I found letters that he had written where he described people were trying to hurt him and follow him in his car.

The next few months were very very trying; the verbal attacks at me seemed to be getting worse and worse. We decided to get some advice from a counsellor. During our visit we explained to the counsellor what had been occurring. She then asked us if my son had been hearing voices, we said ‘voices! What are voices?’

She recommended to us that we should see a psychiatrist. That though, was much easier said than done. I knew it wouldn’t be easy so I told my son I was concerned about our deteriorating relationship, and asked him if he would please come with me. I didn’t tell him that we were seeing a psychiatrist but a counsellor and he agreed to come. We were both interviewed separately; my son was given some medication and told that he would be OK in a couple of weeks. I believed this as I did not know any better.

Nothing improved over the next month, and then on New Years Eve he came to us in quite an anxious state, and said he felt he needed to see a psychiatrist and told us he wanted to go to hospital. He was obviously having his first psychotic episode which was frightening him.

We all drove out to Prince Henry Hospital and because it was New Years Eve there was limited staff available, so they interviewed my son and admitted him into the psych ward. This was the start of many hospitalisations.

I cannot begin to tell you how it broke my heart to see this young man so unwell and not knowing what was happening to him. I can still see the frightened look on his face sitting in the locked ward as we were asked to leave. Over the course of the next six months we had many hospitalisations and many interviews with doctors, then finally they made a diagnosis that my son had Paranoid Schizophrenia. We did not even know how to spell the word schizophrenia let alone know what the illness was.

We would grab any information that we could get our hands on to educate ourselves. In those days there didn’t seem to be as much information available as there is today, it just seemed that you had to learn what you could from the limited information available. One of the first things that I did do was to join a Support Group. We joined two groups - ARAFMI (Association of Relatives and Friends of the Mentally Ill) and the Schizophrenia Fellowship of New South Wales.

SheilaThere were times when I just did not know how I was going to cope; I would be driving my son to hospital at all hours of the day and night, waiting in accident and emergency, hours upon hours in the middle of the night. Many times I would be driving home with tears streaming down my face, most of the time vision blurred from all the crying, hoping and praying that this would be the last time this would happen and that one day I would wake up and he would be cured.

I lived in hope, like we all do, I thought I am his mother I should be able to fix this but I was wrong. In 1995 we decided to leave our jobs in Sydney and come to Port Macquarie to live, my son’s psychiatrist at the time said to me that it would be beneficial for my son to have a much quieter lifestyle without the stimulation of living in a big city, so we made the move.
However, things did not improve. There were continuing attempts at suicide, trying to drown himself in the Canals of the Hastings River, throwing himself in front of cars, poisoning himself on detergents, trips to hospital in the back of a paddy wagon and my visit to the Banditos Motor Cycle Brothel here in Port Macquarie to get him out of some financial trouble that he had got himself into.

My son never wanted to die but just wanted all the pain and mental torture to go away. I will never forget the fear I felt as I sat beside him in the bed in the Emergency ward just stroking his leg as he lay there recovering and saying to the Nurse, “will he be okay, do you think that he will live?” and the nurse replying ‘I am sorry Mrs. Openshaw, I cannot tell you, I don’t know if he will be okay.’

Another time my husband and I had been out shopping only to come home and find the police in our home. My son had thought that we had been involved in a car crash and he rang the Ambulance and Police Service and had everyone running around town looking for the crash that we had been involved in. They traced the call to our home and had my son out on the back verandah reading him the riot act when we returned. I don’t think back then that they realised they were involved with a mentally ill person. Thankfully things have improved somewhat today. But I do remember them saying to him at the time that if ever he did anything like this again he would be charged.

The hospitalisations just kept coming, one of the many times that he was in James Fletcher Hospital in Newcastle, we would arrive after driving 3 hours from Port Macquarie, only to be told by my son that he did not want to see us and go away. The nurses there would tell us, just go down the road and have a cup of coffee and when you come back maybe he will change his mind, and she was right, more often than not he did.
Then there were the phone calls from the hospital to say that he had run away, I was frantic and just did not know what to do. My son managed to find a telephone box and called me from Newcastle, during that conversation I tried to obtain from him his whereabouts, street names and possible locations and after hanging up quickly ringing the police trying to convey to them what had happened, where he may be and could they please get to the phone box as quickly as possible so they could take him back to hospital, but they were never successful and the anxiety about his welfare just grew and grew.

On one occasion when he was missing he made his way down to the wharf of Newcastle Harbour and tried to board a tug that was moored, only to lose his footing and he ended up in the Harbour. He later told us he thought he could hear his father’s voice calling for help down in the engine room of this tug and he needed to get to him. His dad at the time was an engineer in the Merchant Navy.

During this episode he had been missing for a couple of days, he had had no food but managed to obtain a pizza from a shop keeper who was kind enough to give him one. I think he thought he was a homeless person. Finally after spending a couple of nights sleeping in a park he was noticed by a very kind lady who worked in a brain injury clinic in Newcastle. She realised that this young man needed help, so she contacted the staff at James Fletcher Hospital and they came to collect him. I was so relieved to know that he was safe again.

Another time he was taken back to James Fletcher he was put in the locked ward for six months, he was so unwell and so heavily medicated that when they bought him out to see us he was just like a robot, two nurses had to hold him up as he shuffled to the waiting room to see us, I couldn’t believe what was happening to my beautiful son.
I used to take down photos of his bedroom, his car, or anything else that I could get my hands on so that he would feel that he was not being forgotten. There was one time whilst on a visit my son in a very rare lucid moment looked at me and said ‘Mum, you and Dad did this to me,’ I don’t think I will ever forget those words, the sadness and the guilt I was feeling was something that I could hardly bare.

My son was so unwell whilst at James Fletcher, the doctors felt in order to get him on the road to recovery a series of Electro Convulsive Therapy would benefit him. They had planned to administer a course of 12 treatments, but after eight sessions he was responding extremely well. My prayers seemed to be finally answered and it was time to bring him home. He was so well I thought it was a miracle but after about a week he began to become unwell again.

He was not responding very well to medication so a decision was made that he would have to go to a long term rehabilitation hospital and this was to be Morisset. I didn’t know anything about this hospital but somehow in my mind I thought that it was some kind of evil place where people were taken, locked up and the key thrown away.

This was the start of a very long journey for all of us. My son was in Morisset Hospital for 8 ½ years. However, I must say that Morisset is an excellent rehabilitation hospital and as it turned out it certainly was not the place that I feared. Sure there were a lot of very unwell patients there but the staff were all extremely highly qualified. Nevertheless it was always very difficult for me to have to say goodbye at the conclusion of our visits.

My husband was working in Sydney at the time and I was working in Port Macquarie. He would fly down to Sydney on a Monday morning, come home Friday evening then on Saturday morning, we would pack the car and head down to Morisset for the remainder of the weekend. We did this not only for our son but for ourselves as we needed to know that he was OK and let him know that we loved him and supported him.

There were times there too when we had just arrived and wanted to take him out for the day only to be asked by my son as we were driving out the gates of the hospital to take him back, he did not want to go. This would upset me terribly as we only wanted to get him out of the hospital environment just for the day.

There were many meetings and tribunals that we attended in Morisset, if these were on a week day I would work extra hours at work so that I could have the time off to attend. I must say both Hastings Council and Centacare were very sympathetic and good to me; nevertheless I still had to work. We tried very hard to make his stay in Morisset as comfortable for him as we could. We took down a computer for him to use in his bedroom. One time I even organised for a tutor to come in to the hospital and give my son guitar lessons. I was willing to do whatever it took to help him in his recovery.

The years rolled on by but never would I allow him to be alone especially at Christmas, I was always there. During this period I don’t think that my husband and I had one Christmas together. Alan spent Christmas with his girls and grandchildren in Sydney. My eldest son and I always tried to make this a happy time together.

As with all carers of someone with a mental illness there is the financial burden it places upon us. Not everyone is lucky enough to have a job like I did. Even so as you can imagine the emotional and financial strain was enormous.

As time went by my son would start to ask me, ‘Mum when are you going to get me out of here.’ He would accuse us of trying to keep him in Morisset but we tried to explain to him that it was totally out of our control. I felt a tremendous amount of guilt every time we said our goodbyes, and did not stop waving to him as we drove out of sight leaving the hospital grounds.
I think we carers do a lot of grieving; I know that I do - grieving for the loss of the life that my son could have had. Disappointments have been another area in my son’s life where I have had to step in as his mum. The disappointments when his Dad says that he can have a holiday with him and then it does not happen. The times when he says he is coming up here to Port to visit him and that doesn’t happen. All these incidences have a very profound effect on us as carers, we are always there picking up the pieces.

Some years ago whilst attending a public forum here in Port Macquarie I stood up and asked the then CEO of the Mid North Area Health Service if he could help me in some way to get my son back home from Morisset and looked after here locally. This ultimately led us to be put in touch with the Bed Manager in the Mid North Coast Area Health Service, a lady by the name of Genevieve Beggs. As it turned out, this proved to be a valuable relationship.

Sheila yellGenevieve made several visits to Morisset and acted as a conduit linking two different Area Health Services. Hunter Area Health Service where my son was being cared for and the Mid North Coast Area Health Service, where we wanted my son to be relocated. There appeared to be a problem between the two Health Services agreeing that the necessary support services here in Port Macquarie were adequate to meet my son’s needs.

Finally Genevieve had a breakthrough and systems were put into place to enable my son’s return to Port Macquarie. This began on a temporary basis for a few days at a time and then my son would return to Morisset for a week or two and gradually the visits became for a longer period.

The day we drove out of Morisset for the last time was a very happy day indeed, but on the other hand it was full of trepidation, we just did not know what the future would hold. On returning to Port Macquarie my son went to live in the Group Home Ellamatta in Morton Street, and he lived there for the next two years. I cannot praise the staff at Ellamatta enough; they are a wonderful team of people doing a great job. From Ellamatta my son went into housing managed by the organisation New Horizons.

He was in the first group of four young men who became a part of their HASSI program and I am very pleased to say that he is still a part of their program. It is about four years now since he left Morisset and my son has had no further hospitalisations. He has been a volunteer at the Koala Hospital, he is a member of Men Shed at Wauchope and has just completed a small course through the guidance of TAFE in building a pushbike which he has said is a gift for me. He attends Billabong Koala Park as a volunteer, and will soon be participating in guitar lessons again and doing a small engines reconditioning course, once again at Men Shed.

On a final note, I would just like to say I know and understand just what an impact mental illness has on our lives. My journey has been one of a very steep learning curve and I am sure it will continue well into the future. I have all the same fears and hopes as you do for the future of our loved ones, and that is why I am involved with my support group.

My group Hastings Mental Health Support Group comprises both Carers and Consumers. Only in the past year did I decide to invite the consumers to join with the carers, and I must say that it is going very well. I did my homework first of all by travelling around to visit other groups to see how they managed to combine the two. I travelled down to the Newcastle Group, to Cessnock, Tamworth and the North Shore Support Group. These groups were happy with the way they were being run, so I thought well I will have to give it a go here in Port, and I am very happy to say that it has been a great success.

We get around 30–35 attendees each month. We provide a shoulder to cry on, an education session consisting of a Guest Speaker, and a good old cup of tea, cake and biscuits. I have also developed a small Library for the group.

The Schizophrenia Fellowship of NSW has been a great source of strength and inspiration for me, I have made a lot of friends through the Fellowship over the years and we all get together once a year. I have gained a lot of strength in doing what I do as a carer, and I feel very proud to have been associated with people with a mental illness. I have always said that the loveliest people I have ever met in my life have been those associated with mental health.

My own personal story as a mental health carer began I suppose, when my youngest son was about 17 years of age, he is now 37 and our journey continues.

Thank you.

Sheila