Friday, February 27, 2004

I saw Sam again this afternoon. Fortunately I got to see his key nurse first.

I raised the issues that there had been contradictions between the consultant and the ward.

The consultant saw no progress. The ward saw significant progress.

The consultant wanted an increase in anti-psychotic medication. The ward wanted an introduction to "mood enhancement" medication and reduction in anti-psychotics.

I had agreed to try to persuade Sam into a change of medication - but into what???

I went on to see Sam.

He is very against any increase in medication. He wants a reduction. But he is still so poorly and maybe his medication is not yet right.

He knows meication reduces his perception of psychotic symptoms.

But, as he says, what if the drugs are just hiding the symptoms rather than curing them?

Thursday, February 26, 2004

Yesterday we had a meeting with the consultant psychiatrist. She has been his consultant (we think) for several months now. Its the first time we have met her. I think she has met Sam three times. Sam has had three consultants now though he would normally (but still rarely) often meet with a more junior doctor.

I had been full of dread before the meeting. I had no consciousness of anxiety about this meeting but instead transferred it elsewhere so I was worrying about all sorts of other irrelevancies.

The consultant was younger than I imagined and seemed slightly tense. Although she must earn around £70 000 per year the sole was hanging from her shoe. I wasn't sure whether to find this an endearing characteristic showing her commitment to her work and family above material values or just . . . something else.

She rubbished plans we had made with other professionals.

She denied the views of the ward staff - apart from the token ward staff member there who confirmed every word she said.

If Sam did not improve then he was inappropriately placed and might have to leave.

He had not been making enough progress. His use of alcohol and illicit drugs had been noted.

This is the first place Sam has been placed where he is safe and where staff really are working hard to support him. They also support us. Few others support or even regard as important, the carers.

If he is removed from this placement he will be again in severe danger.

I had been in tears in part of the meeting but found the strength to argue that if Sam was not responding that should not be seen as his fault, but instead as a challenge to the ward to try harder - or in different ways. I have worked education. There we could not dismiss a student because he wasn't learning.

However, this woman has so much power. She can decide whether Sam stayed on this ward.

It really could be a matter of life or death.

When we explained this to them they seemed shocked. But they should know his history.

I'm not sure it impinged on their decisions.

I agreed to encourage Sam to agree to increase his medication.

. . . .

We went straight from this meeting to a meeting on the ward with the ward manager, Sam and Sam's key nurse.

The analysis was different. Sam was making progress. The discussion of his medication was different. They recommended that he take some mood enhancers and then his anti-psychotics could be reduced. This was totally at odds with what we had heard only a short while earlier.

Sam had entered the meeting confused. He was talking about his two selves in different ways from when he had spoken to me the day before. He still seemed very confused but became more rational as the meeting went on.


This is when he is well.

Tuesday, February 24, 2004

It wasn't cannabis.

I saw Sam today.

He met me with a smile as he came out of a yoga session. He seemed quite well.

I suggested we went somewhere for a talk. I wanted to know what had happened yesterday. He needed tobacco so we went for a drive into the village.

In the morning I had been to the bank. We have a letter of authority and they were able to tell me that he hadn't withdrawn any money. (We keep the account at zero but they insist at times at giving him credit even though his account does not have an overdaraft facility.) The ward hadn't given him any shopping money.

I'd given him money for tobacco on Sunday evening. Only five pounds. What had happened to it?

A half ounce of tobacco and a pint of beer on Monday. The beer had done for him.

He'd been out with an old friend on Saturday evening and stayed the night. We'd tried to choreograph it carefully. The friend knows the score and the possible consequences. He's responsible (-ish!!!!).

In the end though Sam had too much to drink. He'd seemed quiet when I picked him up on Sunday morning but okay. He admitted to a hangover. He'd had too much to spend on drink and the combination with his medication is not good.

He spent a lot of the day in bed - which is not unusual and he seemed fine playing cards in the evening before I dropped him back at the hospital.

He said that on Monday he still had a hangover. He went for a walk, stopped off at the pub and decided to stay out and not meet his mum at the agreed time.

The drinking on Saturday seems to have triggered lots more psychotic thoughts - or maybe just brought those that are there a little closer to the surface.

He talked of having two selves inside him. One that had the psychotic thoughts and the other that was trying to be well.

Much is difficult to remember because it does not make sense to me. It makes so much sense though to Sam.

He talked of experiences over the weekend that related to those he was having when he was on the acute ward. He is clearly not well but how can he be helped from here?

The staff he is with at the moment are caring and want to help him get better. They see him as a challenge - but one where there could be success. So they have some time for him.

I dropped him back at the ward and made a point of talking to staff to explain my view of the situation. It is important they know he had not taken cannabis. Because of previous events he is in danger of being thrown off the ward.

"Oh, yes," they said, "thank you!"

But nobody made a note. There is a ward round tomorrow and decisions could be taken.

Fortunately we have an appointment with the psychiatrist and later another of our family sessions. I just hope decisions have not already been made at the ward round. Doctors hate being seen to change their mind as a result of conflicting information from patients or carers. They see it as a sign of weakness and threat to their authority.

The stupid, weak humans.

Monday, February 23, 2004

We believe Sam's psychosis was triggered by excessive use of cannabis.

Now that he is getting better he says he recognises the harm it does him. Whenever he has cannabis now he has a relapse.

Although he says this he cannot be trusted. About three weeks ago he had some money and of course bought cannabis and ended up in a bad way.

We spoke to him and ward staff on the telephone today. He has obviously had access to cannabis again.

Each time it sends me into despair. I get so angry. I just can't see a way out if he cannot manage not to continually mess up in this way.

Only last Wednesday we had a meeting with Sam, the ward manager and Sam's key nurse. It was part of a series of family meetings. We tried to get Sam to explain why he had taken cannabis a fortnight earlier when he knew it would do him harm. He could find no explanation other than he wanted to and it did him good at the time. But he said forcibly then and, I believe, at the time meant it, that he could see no reason to take cannabis again.

When he is depressed and has troubling thoughts cannabis gives him respite, a break from those problems. But it also opens a window into all the exciting psychotic thoughts that we keep hoping can be kept in the past.

It is so hard for him - but it is also hard for us. Sam's mum is still doing brilliantly. But I am worried this is going to break me again.

Saturday, February 21, 2004

We've just been to a party. An ex-colleague's fiftieth birthday.

I met lots of new people. And of course you get chatting about family. And your son . . . .

"Yes, he has mental health problems.
"Schizophrenia actually.
"He's been sectioned three times and is in and out of hospital."

"Oh, and me!
"No I'm not working now. Early retirement.
"- But I look too young? Ill health.
"- But I look so well? It doesn't show so much after a few glasses."

Monday, February 16, 2004

Sam has been ill for over four years now.

We first really noticed he was ill from telephone conversations from him at university.

He was in his second year. He was walking the streets at night talking to homeless people as he got on well with them. He talked of a female friend who was sectioned and he visited regularly as he could really understand her. He had a number of friends who had mental health problems. Discussions became more and more strange and we became increasingly worried.

He shared a house with four friends. None of them had contacted us to express concern. Nobody from the university had identified issues - other than him not handing in work - and had not contacted us.

When we collected him he was in an awful state. He was manic and chasing around. He thought he was controlling what was on television and radio, that he could change the music at gigs by the power of his mind. People were looking for him because of his special powers. Voices were telling him what to do. We had no idea he was so poorly.

We had to stop half way home for a break as he could not cope in the car and we just couldn't communicate. We needed the space for him to chase around and for us to listen and try to assess where he was at.

We got him home - but were at a loss for what to do next.

Friday, February 13, 2004

I'm so sorry if anyone has found this site only to be disappointed by the lack of entries.

Having got it set up I have recently been beset by a number of major computer problems. It is a combination of the I-Worm/Mydoom.A virus and trying to get on to broadband together with attempting various upgrades of my system. This has led to disaster and I am still without my computer.

Please be patient. I do intend to contribute regularly to this journal and to attach some helpful links.

Sam has been ill for several years now. I hope to revisit some of our experiences with you as well as keep up to date with where we are at currently.

I see it as theraputic for myself but I really do hope that readers in similar situations may gain some comfort from it in knowing they are not alone in what they are going through.

Watch this space!!! There is more coming soon, honestly

Saturday, February 07, 2004


I cried again tonight.

Sam has had schizophrenia for over four years. He is getting better. Really.

But it still remains hard.

We went out for a meal - me, my wife, Sam and Nell (our daughter). It was a belated celebration of my wife's birthday.

It could have been so nice, so special. The family together in a celebratory mode with Sam comparatively well. But he had messed up again during the week and done heaven knows what today and he was not well. I didn't want to be with him.

In the end he didn't spoil the evening - I did.

I wish I had started this journal four years ago. It would have helped me and I hope possibly helped provide a focus for others in the same situation.

I thought it was too late now. We'd been through all the problems of Sam being sectioned, the appalling state of the acute wards, the few brilliant and caring nurses, the uncaring and aggressive nurses and managers.

But I'm resigned to the fact that the issues for us will continue.

It might be useful to share some of our experiences and provide a focus for others in the same or similar situation.

If what you read here seems familiar please do feel free to write.

I don't promise to reply but I will read all communications. When I have time I will try to write back whenever I can. Please also see the links posted on the sidebar for further support.

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