My beautiful boy got ill

This is a short piece my Mum was asked to contribute to a book some Phychiatrists/Psychologists are compliling made up of the experiances of people close to those with or who suffer from mental illnes

He was 18 and I thought just being a teenager. He was moody & had headaches and spent a lot of time in his room (which was very untidy). Then one day I got a phone call from a friend who said he thought I should try and get help for Stefan as he saw signs of very strange behaviour. I was distraught and all my other well-meaning friends said don’t worry he is just a teenager and let him be, he will be OK.

 

Then Stefan started talking to me about his brain being affected and how he had gone to the library and looked up information. He talked about the hypothalamus and was obviously well informed. But then he started refusing to walk through the front door because he said the people in the flats opposite would shoot him, and that he had seen a girl drown when we had been camping in Tenterden, and many more strange memories and ideas.

 

This is when I started to get really profoundly scared. I turned to my GP to ask for help. He said to me that when the big psychiatric hospitals were open, Stefan would probably be placed there, and medicated until stable, then released. But as it is, he could only put me in touch with Psychiatric Outpatients. After going through our situation with the relevant staff at the Outpatients centre, we were told that we should go for a few sessions of Family Therapy to work through our problems.

 

On the day of our first Family Therapy session as the time drew near to leave for the hospital, Stefan became extremely agitated. He voiced his fears in increasingly frantic tones. He was convinced that all of us were going to be executed on arrival. He was screaming that his younger brother had to stay at home so that he would be spared the death that awaited us all. Jonathan, my youngest, was so upset by the bizarre pantomime that he locked himself in his bedroom and refused to come out.

 

We missed that session.

 

Our second Family Therapy session went a lot better. By that I mean to say we all got to the hospital, and even into the interview room. We spoke as best we could with a pleasant CPN, accompanied by the evil-glares and muttering we’ve since come to recognise as the manifestations of Stefan’s psychosis.

 

At one point the CPN had to leave the room and go and do whatever it is that these people do on leaving interview rooms, at which point Stefan leapt to his feet and went into the corridor. I asked why, and he told us all that if we stayed together in the room without a member of staff it would give them the opportunity to gas us.

 

As time went on Stefan’s behaviour was becoming still more bizarre, and we pleaded with the psychiatric staff to tell us how to deal with him day-to-day. I remember asking outright whether Stefan had schizophrenia. But their responses were always evasive. We asked if we should humour his delusions, or deny them completely... They wouldn’t give us any help or guidance on how we should cope. I felt that I had no support, that my family was completely alone with this familiar-faced monster in our home. An un-named horror is worse than one you can put a name to, but the mental health workers didn’t seem to understand that very basic psychology.

 

***

 

After a year Stefan was hospitalised, and put on a depo (depixol). The side effects were horrendous but he coped and moved to a supported home and then his own flat. I worked part time in those days and would visit Stefan every day after work. We would walk, have a cup of coffee or sit on the beach. He spent a lot of time on his computer drawing and making his electronic music. It hurt to see him struggling to be normal in spite of severe tremors. He spent loads of his cash on tiny metal models of gaming figures and painted them in beautiful detail. He told me that when concentrating on them he could control the tremors, but when he went to bed and tried to relax it was as if he had cramps all over his body and he couldn’t sleep. (And doctors blame the patients for not taking the drugs. I think that all doctors should have to take the medications to see what they are asking their patients to go through).

 

Then the nightmare started again. Stefan started to get ill because some stupid nurse had said he could refuse his depot, so he did.

I then had to watch him day after day get worse and worse. He wouldn’t go to the shops, so I brought him food. He didn’t clean the flat, so it was impossible to find a clean cup. They were all in the sink going mouldy. I bought him a washing machine but he refused to wash his clothes because “the fibres would be altered”. He wouldn’t put money into his post office account because he “wouldn’t get the same notes back”. It hurt, all of it hurt, my beautiful cleaver, talented son wasn’t coping, was not normal. I turned to the out patients mental health team and all they would say was “He can come and see us”. He wouldn’t even go out of his flat! Or they said “We went to see him and he wouldn’t let us in”. That let them off the hook. I felt really isolated.

 

I was completely confused by the hospital. When Stefan was balanced on his drugs and well they said he must be getting high on the drugs because he was willing to take them. I was told that Stefan would have to have the drugs for the rest of his life but he couldn’t have the ones he felt happy with as he might get addicted to them. He had to have them for the rest of his life, so what did it matter if he was addicted to them, if he was happy taking them.  I remember one time when Stefan was happy with the balance of the meds, he actually asked me not to let them mess with his medication as he felt OK half an hour after his depot. He must have thought I had some ability to affect the medical gods.

 

The psychiatrist didn’t believe he was as ill as his records made out. And that he was addicted to the medication they were giving him. So, Stefan’s medication was ‘deffered’ to “see if he is really ill.” He ran away from the hospital again not long after that experiment.

 

  Stefan disappeared, for weeks, sometimes months at a time. Nothing can compare to that constant fear and dread. I became trained like Pavlov’s dogs; every time I heard a phone ring, wherever I was, whoever’s phone was ringing, my stomach would lurch and I would have to make a conscious effort not to panic. Because a phone call could be the police phoning to say Stefan had absconded from hospital again, or he had been found in Bedford or Wales or even Stefan himself phoning in a panic from god knows where. Somewhere I couldn’t help him.

 

 I could not get him out of my mind. When it rained I worried whether he had shelter, when it was cold I prayed he had somewhere warm to be. I knew I wasn’t being logical as Stefan could be anywhere and just because it was raining here it didn’t mean it was raining there.

 

He was missing for an entire winter and although I functioned, went to work, shopped, cooked etc, I was constantly aware that Stefan was vulnerable and in danger.

 

The police were very good. I had to phone the police so often during that time that they gave me a direct number so that I didn’t have to explain to the situation every time I called. I remember one time when Stefan was missing the police phoned to say that the hospital had contacted them. They said that Stefan was no longer in the hospital so they had taken him off section so he was no longer a missing person. The police asked me if I agreed with this. As no one had seen Stefan for about 2 weeks, as far as I was concerned he was still missing. I still get angry when I think of this sort of behaviour from the hospital.

 

 

***

 

 I was on anti-depression tablets for years. I had to carry a water bottle with me as I was thirsty all the time. I always had a pint of water by the bed as I would wake up because my mouth was so dry. And a pint did not last the night. I would wake up and weep until I couldn’t cry any more. I often had the radio on all night so if I woke I would have something to listen to, something to distract me from my own thoughts.

 

I mourn what might have been. While others of Stefan’s age have married, split up, had children, got jobs, travelled, bought houses, gone to university, Stefan has been in stasis. He hasn’t moved forward. I would visit him in hospital and the only subject he had to talk about was his childhood. Sometimes we would just sit in silence as he would say “I do nothing, so I have nothing to say”.

 

Occasionally I see the true Stefan come back. One time he was really animated and exited. He had been taken on an outing with a small group from the ward to Drusilla’s zoo, He obviously really enjoyed it, he loved the animals and the whole event. This brought home to me more than anything else how frighteningly deadening for him it was to be in a locked ward never going anywhere. He’s spent six years locked on a ward, and that’s just this time.

 

***

 

As Stefan eventually started to get better he told me a story of when he was on the streets. It goes like this:

“When I was starving, I went into a shop and bought a tin of condensed milk, as I thought it was nutritious and would fill me up, and I had enough money to buy it. But when I got out of the shop I realised I didn’t have anything to open the tin with.” He went on to say that he managed to find a stone and smash a hole in the tin. I wanted to cry when he said this.

 

This is why I have been fighting for years to get help. I have two big files of correspondence with the various authorities. So much of the time it seemed no one listened, and I was dismissed as an over anxious mother making a fuss. As if Stefan was a small boy with a rash.

 

But this was a man, my son, who ran from hospital because he was afraid. I have sat beside him in hospitals when he could not speak because the drugs he had been given were so strong. I have seen him stumble because he found it hard to control his limbs and walk. I have seen his limbs contort in reaction to the drugs he was on. I have told every doctor he has seen that he reacts badly to the drugs. I have pointed out that he had been starving and maybe his oedema was caused by malnutrition. I have got angry because Stefan was sleeping in the shower attached to his room and the psychiatrist said he was well enough to be taken of section and released. I have pleaded for help and advice and been dismissed. I have left home at nine in the morning and got back at eleven at night travailing on the trains so that I could spend two hours with him. I visit him knowing he would love to see someone else (he asks me to ask others) but at least I am a visitor. I have learnt that other people voice sympathy but are busy with their own concerns.

 

I sometimes wonder, when waiting with Stefan to go into a meeting, how the doctors would feel if they had to wait for an interview that would decide their fate, month after month, year after year. They don’t let patients get angry, or family, you are either put down as ill or over-emotional. Considering the build up of pressure before one’s monthly trial, I feel that both these reactions are normal.

 

I’m tired seeing my son suffer under medical professionals. I’m tired of their narrow vision. I’m tired of trying to point out to them that maybe he is severely physically ill as well and that if he was physically better he would respond better to his medication. I suppose I am just tired.

Author's Note

This is written by my Mum, Maggie.
I've gone through it a bit with her to help her organise it a bit more than it was. And to actually USE the spellchecker. She is notorious for her crimes against spelling, something I have inherited.

If you have any input or comments, I will be sure to pass them on.