'schizophrenia'

- a carer's journal

I went to see Sam with Nell today.

On the ward he had that look. You know. That look of mad people in hospital. If you're not used to it then it can be scary.

There was no connection. He was in his own world.

We went out and as the day went on he warmed. He was quiet and his few remarks were unusual but as the afternoon progressed we forced through occasional bursts of humour talking of times long passed.

At Nell's instigation we played "Pooh sticks"* on a bridge over the stream. Nell won.

Can you cheat at "Pooh sticks"*?

I also had to retell the story of "The Three Billy Goats Gruff" as we trip trapped over the wooden bridge because they'd forgotten it.

I don't know who is more mad really!

The journey back in lovely evening sunshine with views of still lying snow was only marred by an accident that delayed us.

I enjoyed today but discovered I was totally exhausted on getting out of the car.

And I haven't even told you yet about "THE PLAN".

It's kept me busy since Wednesday.

It's complicated and only possible because of the kindness of a very special person who we have come to know through this blog.

We've been pleased that mental health professionals concerned have acted promptly and seem to be trying to help rather than get in the way. Maybe the idea is so mad that it must be the right one.

I'll tell you more later - but Jane and I will be in France for a few days this week trying to make sure it can work.


*If you don't know what "Pooh sticks" is read A A Milne like I enjoyed doing to Sam and Nell when they were little. I'll find an Amazon reference later. It'll be much better than my dry explanation.

Found it. This should explain it:
Poohsticks

I was describing my and Jane's reaction to the suggestion that Sam might have to stay on that ward for five years to a friend.

She came up with the most generous, imaginative and really great idea.

I was really moved by her offer and was in tears when I phoned Jane to discuss it.

It might never happen - but we are so excited.

It could give us the opportunity to get Sam out of that place for a while.

I've just spent a long time trying to write to Sam's consultant to get his agreement.

The letter was flowing and then half way through I was interrupted. I could no longer remember what I was trying to say. I sat and looked at the screen for ages writing nothing. Eventually it got finished and sent.

If it works out I'll tell you all about it.

Keep your fingers crossed for us.

Please!!!!

Jane visited the ward yesterday with a friend.

I was supposed to be going.

I hadn't slept and was feeling not at all well and Jane insisted on replacing me though I said I could go. I was grateful that she offered. Later I realised I had not been up to it.

There was a ward round meeting that Jane joined. There was talk of being honest with Sam. Thet he might be there for at least another year and maybe five.

FIVE YEARS!!!!!!!

Can this be the same team that at the last ward round we attended agreed that being on the ward was contributing to Sam's illness?????

Jane woke up in tears this morning.

Not those little ones that roll delicately down the cheeks.

No - just huge sobs.

It gets too much for all of us and the thought of Sam being there for five more years ...

It's just not going to happen.

When Jane visited on Friday she got to chat with the ward doctor.

He seemed very positive about Sam's leave being built up and soon to have some weekend leave at home. That's good news. Though it might not always be easy.

It seems that they have decided to leave Sam on the Clonazapam as he seems so much better now he is back on it. Instead they are going to slowly reduce one of the anti-psychotics - the Olanzapine - to eventually see how he is just on the Aripriprazole.

This is the approach that a friend of Jane's had recommended. She is a nurse whose son has been severely damaged by antipsychotic medication so she has turned herself into something of an expert in this area.

Jane also managed to visit the Occupational Therapy (OT) department. We've never been allowed down there before. She got off to a shaky start with the person in charge who was defensive about the set up. But then she opened up and admitted that the place was poor. It was underfunded, understaffed and underequipped. For instance there was just one computer down there and it did not have internet access.

The OT manager said herself that she had no idea where the money all went. She thought that ward was making millions in profit and was clearly very frustrated and angry.

So much for the private sector!

Earlier this week Jane rang to say she hoped to visit Sam on Friday. She mentioned about leave.

"Oh, he's got four hours allowed out with his parents now. Didn't you know?"

Quite how we were expected to know this surprising news when nobody had bothered to tell us heaven only knows. Only last Saturday I was not allowed out in the grounds with Sam without a nurse walking two paces behind at all times.

Jane and her brother took Sam for lunch and when the rain cleared had a lovely long walk.

Sam phoned after they got back.

"How did it go?" I asked.

"Brilliant," came back his reply.

A few days ago "Baby 81" was in the news.

A baby had been found following the Tsunami disaster and parentship had been disputed. This had finally been sorted following DNA tests.

Sam phoned to let me know that this baby was the son of God.

It was so obvious.

He wasn't prepared to discuss it.

So I didn't.

Last Saturday I talked again about possible links between cannabis and schizophrenia.

By coincidence Sam has been talking about cannabis again when I saw him on Saturday and again on the phone. He believes that it will help him see clearly, help rid him of the confusing thoughts in his mind. However our experience is that it will do the opposite.

It is interesting though that he often comes up with this argument so strongly.

Here is a rather different Valentines Day card for you all.

- Mike xxxx

When I saw Sam yesterday he seemed down.

His shoulders were hunched and he had to try hard to communicate.

I'd asked if I could walk with him in the grounds as he has leave to do that. But when I arrived it was 'handover' and someone needed to accompany us. We would have to wait.

As I talked with Sam he described himself as "depressed and in despair".

In despair about what?

"I just don't understand it any more. I can't understand why I'm here."

He talked of his voice in his head laughing at him and other voices that he didn't understand.

But he'd seemed well on the phone this week.

At last we could go out. But now it had started raining again. Pouring. Sheets of rain driving down.

Sam and I had waterproofs on. The young male nurse with us was wearing a light fleece top.

"Can Sam and I just walk as far as the trees where you can still see us?" I asked.

"Of course."

Then I realised he was following us in the rain. Two yards behind. Just in case Sam made a run for it. Very conscientious.

"We can walk down this way for a while, if you like," he said.

So we did, as we all got wet and the wind blew the raindrops fiercely into our faces.

We turned and I tried to chat with Sam about weather and - I suppose - freedom.

We all wanted to get back now. It wasn't good weather to spend long out in but Sam valued the experience of the harsh wind and the rain spilling from his face. It hasn't happened to him for so long.

Just outside there is a whole world of weather that none of the patients experience outside the smoking room and the TV room.

I've mentioned here before that we think it is likely that Sam's schizophrenia may have at least been triggered by cannabis use.

The theory that cannabis use can cause schizophrenia - or at least pscychosis - in vulnerable people is gaining ground but is still very controversial. One theory is that use at an early age is a factor.

I subscribe to a mailing list about this topic - but contribute rarely (sorry Helen!) If you are interested you can join it by emailing HERE. If I've got that wrong I hope Helen will let me know.

Helen has written an open letter to SANE (a UK charity) about their attitude to the recent reclassification of Cannabis in the UK. Rather than me try to explain all the issues please do read Helen's letter HERE.

And if all those links work I'm doing better than I thought!!!!

Sam keeps phoning.

But he's got nothing to say.

Neither have I.

So I ask him about how things are ...

... and of course they are dire.

He's well enough to know that.

He knows it when he's more psychotic as well.

He complained that they've changed his medication. It sounds as if they are still putting up the dosage of the Clonazapam before they start to reduce it. I'd hoped they had already put it up as much as intended.

It would be nice if they talked to us.

Perhaps we talk back too much.

I'm finding posting difficult at the moment.

It just seems very emotional here just now. It's probably me.

It's all very difficult.

We went to a wedding at the weekend.

It was a typical English middle-class do. The ceremony was in a beautiful ancient church decorated with candles and flowers. The men in the families looked very smart in morning suits - even the groom's brother acting as usher with a ring in his eyebrow. The bride was all in white with a veil and the three bridesmaids shivered in the cold February air in their strapless long dresses.

We'd rushed cross country to get there. On the way we dashed into a pub where Jane changed before jumping back into the car to arrive just in time for the service. All very "Three Weddings and a Funeral"!

I'd told Sam about it a little while ago.

"Can I go?"

But of course he has no leave. He sent his best wishes. Sometimes he would not even have been aware of others enough to do this.

During the service there were two readings about "love". Jane and I both found these very moving. The worries we have been going through for the last few years cannot but put a strain on our own relationship.

The reception was in a lovely old country hotel. We'd left our car at a cheaper hotel a few miles down the road and as we arrived by taxi driving down the tree lined drive of the hotel the sun came out making a beautiful evening and we climbed out to drink champagne and eat canapes on the lawn.

The copious amounts of wine certainly helped to cheer me and I even managed to dance for a short while.

A woman I got chatting with told me of her grandmother who had been locked away in an asylum for twenty years because of a nervous breakdown and of her nephew who also clearly had problems but who had run off to the west coast of America where he was living on the beach and begging.

I'm sure he is happier than Sam locked away in his own asylum.

Jane read yesterday's entry.

She pointed out that Sam's room was MUCH worse than I had described it.

She got a phone call today from the named nurse.

It seems Sam had packed his own bags, several times, including his toothpaste and shower gell because he believed he was going climbing.

Well, you can say anything. He's mad isn't he? He has strange beliefs. He acts outlandishly. So how can we possibly suggest that wasn't the case???????

But the only unbelievable aspect is, however confused he was, that Sam would ever consider it in the slightest bit important to pack his toothpaste!

Especiually as they are telling us that he is a little better!