'schizophrenia'

- a carer's journal

Late on Friday night Sam threatened to kill me three times.

I don't believe he ever would do such a thing.

But we have had concerns.

Earlier in the week Jane heard that a carer who she knows in a different part of the country was stabbed by her son and is seriously ill in hospital.

Sam sometimes plays inappropriately with the kitchen knives. Nell had raised this with me and I had agreed to hide them over the weekends when Tom was home. Of course I forgot. But after that news this weekend we did.

Sam had had a good evening though - until late on when he developed more psychotic symptoms and spoke to me in that aggressive way. He's been so up and down.

We had a friend staying who is a survivor of the mental health system. Sam spent time with her over the weekend and responded so very, very well to her. She had insight into his thoughts and he knew that and respected her. It's also good for him to have someone apart from close family who genuinely wants to spend time with him.

So maybe there came a contrast between her and his family. I don't know.

On Saturday he spent some time out with this friend and she took some great photos of him enjoying himself. He looked so relaxed and happy. He phoned me while they were out to let me know what they were up to so we wouldn't worry. He sounded so well.

But as soon as he walked trough the door back home our friend also noticed how his demeanour changed.

He'd perhaps kept himself well enough for a while and could now give up again.

I think he can be well - but it's hard work. He'll often do it when he needs to in a social situation. But depending on how important it is to him he may at any time relapse back into psychosis again.

He perked up again later on Saturday evening. He was tired though after his exertions during the day and I thought he would go to bed and settle quickly.

But after his evening medication he became more psychotic again.

I genuinely wonder whether this can be actually caused by the medication.

Over the late evening he as quite physical with me at times and threatened to kill me once again. I was totally exhausted and unable to cope again with a similar night so Jane took over. I think when he gets obsessed with issues about one of us it's good for the other to take over.

It was after three before he finally settled.

The next day he coped again - we even went out for a meal together at lunchtime. He'd managed to do the same very well on Friday evening.

It's difficult sometimes trying to decide how much to put him in situations where he has to cope with the risk that he may not, with all that entails, or just go along the line of low stimulus and making no demands.

Getting that balance right is so difficult.

But from the weekend I what I will remember most is not Sam's threats to me but instead the beautiful photographs our friend took of him.

I'd love to be able to publish them here.

Perhaps somewhere else.

Sam phoned last night quite late.

The payphone wasn't working and when we phoned him back he was on an extension somewhere noisy so it was difficult to hear him. But when we tried to ring off -

"No, don't go, it's good to talk with someone sensible."

He'd had some delusional thoughts about something he believed a nurse had said to him. It related to a major trauma not long before he became ill. We knew a nurse wouldn't have said that to him. Sam often believes we have said things to him that we haven't. We tried to explain that - as otherwise he was quite rational.

"Because I can't stay here if people are going to say things like that to me ..."

The last thing we want is him jumping over the wall again!

Our phone's not working.

It's Monday today.

They'll look at it on Saturday, they say.

I was angry about this anyway - but even more angry when we heard on Jane's mobile phone that Sam had gone missing yet again. He walked back in an hour later. He'd gone over the wall but had just gone for a walk.

The positive bit is that this is the only ward he has gone back to. I hope they think of that rather than just the risk of him having gone missing.

I'm tired after a busy weekend and taking Sam back. But he's been really good this weekend. he seems to have got better all the time.

We have a US friend staying with us at the moment. She has a history of having been in mental institutions herself but is a trained health professional herself.

Sam took to her straight away and she spent a lot of time with him, encouraging him. It really brought him out of himself.

We've told her she's got the job!

If only ...

He seemed so well when Jane picked him up. Even had a bag packed for the weekend - unheard of!

But of course the bag was packed to go climbing for the weekend with someone he hasn't seen for years. When he got home I was distressed by a conversation that hightlighted so many delusions and confusions and I felt so very down again as how long I could keep up with this.

Then we went for a walk and he seems more focused now.

Perhaps it's my strength - or lack of it - rather than how well Sam is that is the problem.

This Wednesday it will be a fortnight since the meeting where it was agred that Sam's medication would be reduced. Though it was also agreed that we would wait another fortnight.

However Sam did run off the evening sfter the original meeting so ...

We wondered if they might have changed their minds yet again. I think they probably have and I doubt they will bother to tell us.

So Jane rang the ward and had a helpful conversation with Sam's Named Nurse. It seems Sam was discussed at ward round last week so won't be discussed again until next week. We can't be there then but at least we have flagged up the issue for discussion. Perhaps someone from the Assertive Outreach Team might go. They seem to have a similar view to us about the medication issue.

Sam's been back overnight. He did very well yesterday - coping with a very busy day. It was late before he finally settled to bed. I don't like leaving him wandering in the house at night so it was late before I got to bed as well.

This morning he still seemed good - apart from the conversation about aliens I suppose!

Sam was up early this morning. He hadn't slept well. He was high and noisy and singing and shouting and making inappropriate comments.

Jane got him in the bath - partly to get him clean but partly in the hope of calming him a little. he suddenly tarted shouting and crying. Perhaps the catharsis of that helped but once he was out of the bath, dry and clothed he had calmed.

He seemed fine from then on.

Until after lunch a little before he was due to go back he looked upset and angry again then said he needed to go to bed and went upstairs giving me a glare.

Later I tried to wake him to take him back.

" I'm mad again. I don't want to die. I don't want to be mad."

Then he rolled over and tried to sleep again. I left him for a while then when I woke him later he was fine. He was able to get himself together and seemed really well again.

Back on the ward:
"I didn't sleep too well last night Nick so I'm just going for a quick sleep. Can someone wake me at dinner time?"

He sounded perfectly okay to me.

It would be easier if there was some stability. His changes in mood and capacity are difficult to cope with.

At the recent ward round they were talking of introducing different scales to measure his progress or lack of it. Clearly at the moment they have no idea. The trouble is - how do you measure something that never stays still?

On Thursday I'd started with a bad back. It seemed to be tension rather than a trapped nerve. It became more and more swolen and painful as the day went on. Early Friday morning we set off for a long weekend break. Although I was tired the back miraculously started to improve. The tension had gone.

We had a lovely weekend. Though panicked on Friday when we got a phone call from the hopital - but it wasn't an emergency.

Sam's been quiet over the weekend. We rang and arranged for him to stay over again tonight. He's seemed vey well. He's listening to music now and has been really quie sociable and sensible.

:::::::::::::::;

Later:

"I don't like becoming mad," he said.

Then he looked me in the eye, "I'm well now."

And for five or ten minutes was perfectly well. Then he drifted away again.

It's great to see the old Sam if only for such a small while - but also somewhat disturbing and upsetting.

Jane phoned about lunchtime and Sam sounded great. He couldn't really remember much about the previous night but he was rational and chatty. He did say though that he had walked alongside the motorway when he was out.

Nell had the car so we couldn't visit - but later I managed to borrow my father's car to go and see Sam. We had to ring and get the consultant psychiatrists permission as he had been put on 15 minute observations.

When I arrived late having driven through the rush-hour traffic I met a friendly nurse. "Oh yes, Sam's looking forward to you coming."

But he'd gone back to sleep. Recently woken he appeared surly and the look in his eyes showed psychosis to me. I was a little wary though staff were trying so hard to be positive.

When we got outside he didn't want to go for a walk. Could we drive somewhere.

Okay Sam.

I thought he was probably safer encased in the car. Slightly less easy to suddenly run off.

In the car he harangued me. Why had I come?

He also talked of what a wonderful time he'd had the night before. So many miracles. he'd seen the golden light again.

It was local election date. Could he vote? Why couldn't he vote? Wasn't that why I'd come?

So soon I took him back again confused and sad (that was me not him this time!) and wondering how he would be over the weekend and wishing we were there. But we can't do everything.

We had a phone call about 3.30 this morning.

Sam had been picked up and was safe.

He'd been seen soon after he went missing stealing a sandwich from the local all-night supermarket.

From there he must have been walking towards the nearest large town. A few miles down the road he passed the hospital where he was last. He was found in their grounds sitting on a wall smoking a cigarette. Perhaps his legs were tired and he fancied a sleep. Maybe he decided he'd had his adventure by then.

I went for a walk with Sam before the meeting. He seemed well.

He seemed to cope with the meeting.

Better than me.

I'll write more of that later.

But we've just had a call to say that just after midnight Sam went missing. He broke the locks on his windows and climbed out.

He's been missing before.

But each time ...

Sam's clinical psychologist has been away for a couple of weeks. He got back today and phoned the ward. He discovered the issue about the change of medeciation.

He rang Jane on her mobile while she was in a meeting. He just went ballistic. He was clearly as angry as we have been about it.

Maybe he'll come to the ward-round meeting tomorrow about it. It would be good not to have just me going on about it.

I'm not feeling too well, perhaps partly because I'm worried about the meeting tomorrow - but part of me is also looking forward to it.
...........

I drove my parents across the country today to visit my uncle (my dad's younger brother) and my aunt. He has Parkinson's and she has Dementia. They have coped at home until recently despite numerous accidents. They were desperate to keep their independence despite the stress and worry this put on their immediate family and the time it took them in help and care.

They are in a care home now. This was the first time we visited.

They are much better than last time we saw them. We were so worried then as they seemed to need 24 hour care yet were at home alone.

Now they seem happier and settled. My uncle's sense of humour has returned so we have to put up with all his bad jokes again. And he's trying to plan a holiday. For someone so poorly he is so full of life. He's a real example. A hero almost. It was an honour to be pushing him around in his wheelchair and to get his food from the restaurant bar for him. It's lovely to see them both recognising each other's needs and supporting them still so much in love.