'schizophrenia'

- a carer's journal

When I picked him up yesterday he looked very manic at first. But he soon settled and in the car we were having a reasonable conversation.

Well, okay, not like you and I but at least we were talking and making some kind of sense.

A little later he was very strange again. Communication was difficult - then he took himself to bed for half an hour.

When he came down he was sorted again. He just needed that space to organise his thoughts. He was much better and he coped with the rest of the evening.

When Jane took Sam back last weekend she said how poorly he'd been.

Staff appeared surprised.

He'd been okay during the week they'd said.

We'd wondered about it being to do with the change in timing of the medication ...

Staff were unconvinced -

just part of the cycle.

But when Jane rang to arrange this week's leave it turned out that Sam had continued to be poorly all week. Even running off once from staff - though Sam told me today he'd just been running across the road.

Sometimes he does just run off suddenly. It doesn't mean he's trying to get away. It's just a burst of energy. But for a staff member on their own ...

Though for a parent on their own ...

Even when he's been well today - he's been worried ...

... so very, very worried.

"last night I heard Jesus screaming"

Sam's not at all well this weekend. He looks troubled. He is confused. He stands and stares at me.

A couple of weeks ago we had a CPA meeting. Because of concern about Sam's continued sleepiness it was agreed to reduce his olanzapine by very small amouts - down to the recomended maximum!

But this didn't happen. Then last weekend we discovered that his morning dose had been stopped and added to his evening dose so he was having it all just before bedtime. Someone clearly had the bright idea that this might be an alternative solution.

What is the point of having a planning meeting if decisions made are immediately changed at the next ward round meeting?

Of course nobody has informed us about the change of plan or it's rationale.

Since this change to Sam's medication last weekend he slept almost all weekend as was not too well when he was awake. This weekend he has been less sleepy but is clearly very poorly. It may not be due to thae sudden changes in the administration of large doses of powerful neuroleptic drugs. It may just be coincidence.

But then again ...

I'd memorised some of the things he said earlier - and of course have forgotten them all now.

He's lighting his cigarettes from a candle we've lit in the kitchen as, of course, the matches have disappeared again.


.........

Later he has calmed a little.

Laying on the sofa with a sigh:
"Can I stay here for a while - just forget about the police and the mental home?"

He arrived home - eyes staring.

He couldn't find his tobacco. It was in the car's glove compartment where he'd put it.

He was active, fidgety, talking in staccato bursts but unrelated to what was said to him. I wanted to hug him but he was aggressive in his stance to I just put out an arm to him.

He talked intensely staring at me.

He looked at me with a worried anxious intense gaze. What was he seeing in my face?

Then he would start talking again impressing on us that he wasn't crazy. It was important we understood that. What he felt was usual for someone who had met the Holy Ghost.

He was sitting on the hall floor sucking on an unlit cigarette. Then he rushed upstairs. He was looking for a lighter. He'd lost the matches I had given him only a few minutes ago.

We found the matches and he's outside smoking his cigarette.

He's been home less than an hour.

I wonder if he will be like this all weekend and whether he will sleep tonight.

He's just oome back in.

See you soon ...

Sam sleeps a lot.

Anyone depressed can spend time in bed, alone escaping from the realities of life. I do it myself. But Sam spends a long time there. Sometimes it is because he is depressed. He's not sleepy but trying to gather his thoughts and sometimes trying to control the confusing thoughts going round his head.

But medication is a major part of this.

He is given huge amounts of anti-psychotic drigs - basically tranquilisers - and then they complain he won't get out of bed.

Nell picked Sam up after lunch on Saturday. It was about two thirty. Sam had clearly just woken up and wasn't fully dressed even though he'd got up for his lunch just a short time before.

They did some shopping and came home. I popped out to the shops soon after - having suggested to Sam he might like a walk. I guess this was about 3.30 or 4.00. When I got back from the shops before 4.30 Sam was already in bed and seemed asleep. He had difficulty reaponding to my suggestion of a walk. I woke him again about 7.00 to say dinner would be ready at 7.30. he got up, enjoyed dinner and managed to socialise for a few hours. I expected him to want to stay up late but at 10.30 he said he wanted to go to bed.

He came down a couple of times for supper and cigarettes but then settled.

I didn't hear from him again overnight.

I woke him at 10.00 for his medication. He took it and went straight back to sleep.

He got up about 12.30. He was reasonably active - though with a few long rests on the sofa until about 11.30 when he went to bed again. Once more he got up a couple of times during the next couple of hours but then didn't stir until 12.30. He managed to stay awake - though looking tired until I took him back to hospital after lunch.

I've not counted the hours but he was clearly been asleep much longer than he has been awake this weekend. That is not unusual.

Sam's home alone with me tonight. Jane's away for the weekend and Nell has gone out with friends.

I have the laptop on my knee so I thought I'd try to record just a little of Sam's conversation. I find it so hard to remember later whether he's said something profound, poetic or prosaic.

Just a sample from the last half hour:

It was mad last night. I thought I was in Iraq and there was fighting all around. I was just dancing like this. Sam grinned at the ludicrousness of it. It's clear he knows he's not well when these things happen but cannot control it.

He talked earlier about having been over-concerned about the war this week. Then he said he'd seen himself well, big and tall at the other side of the wall compared to being small and insignificant which was how he saw himself now. He'd seen himself proud and strong.

What happened was I got higher and higher and higher and met the holy spirit. ....

Have you ever gone mad dad? He recognised he was mad - but I suggested he was getting better which was how he could recognise his madness - but no he was mad all the time he said.

I'm feeling sick.

I feel sick all the time

I wake up feeling sick I go to bed feeling sick.

He went to bed after he got home this afternoon. He seemed reasonably okay but a bit depressed, certainly very down. He hadn't wanted to get up for a walk.

Later he was persuaded to get up t eat a take-away curry. We've had a game of chess. I'm still winning so he's not at his best yet. But he's not at his worst - he can play chess for heaven's sake. We've just played a simple game of "fox and geese" on the chessboard. I keep winning and he's got frustrated.

He's changed the music and he's lying, listening, thinking.

What are the thoughts like I wonder that go through his mind?

Whilst I sit and type this ...

"Dad what are we doing tomorrow?"

"Well it depends on ..." This and that and the weather and getting a meal ready for when Jane gets back.

"Shall we go to ..." Sam mentions a favourite place.

"OK Sam I don't see why not."

"We could walk there and get the bus back."

It's great to have a normal conversation rather than those about golden lights shining down and meetings with the holy spirit.

We've had a nice weekend with Sam.

He seemed to get better as the weekend went on.

We'd invited friends round for dinner who Sam likes and he enjoyed it. Earlier we'd had several short walks - which I was finding a bit taxing being a bit wobbly at the moment.

Though Sam didn't sleep well last night. He wasn't manic or anything - just couldn't sleep.

But I had to get up early this morning to give my mum and dad a lift and am completely done in now!

Sam had slept all morning. Didn't want to get up for any breakfast or lunch so decided he needed some fish and chips on the way back. So good in helping reduce his weight!

But going back now feels positive rather than negative. it really feels as if there are good things thee for him to look forward to that we couldn't provide at home. He has been involved in so many activities over the last few weeks.

On Monday I woke up feeling ... Well I didn't wake up properly really.

I was dizzy. I often feel dizzy first thing in the morning - but not like this. Each time I rolled over I had to keep my eyes closed for a few minutes until the room stopped swirling around me as if I was drunk. I ached all over with the usual ME symptoms back again.

It was probably because that day we had a meeting with Sam's care co-ordinator and psychologist before his CPA meeting with the consultant and other staff on the ward. Then in the evening we planned to take Sam on leave for a meal before going to a local support group.

Any of those is probably enough to send me into palpitations - but all three?

I wasn't consciously worrying about any of it - but the last time I felt like this was the morning of Sam's Tribunal. I'm sure it's not coincidence.

The day went well. The first meeting was positive and then the CPA meeting. Sam arrived clearly having just woken Sam's care co-ordinator managed to raise a couple of issues about medication so it isn't just us making a fuss. As a result the medication will be reduced again slowly.

That's very good new and Sam was pleased. He's also got more leave and possibly some unaccompanied leave. You got the impression that there were a group of people there trying to work positively with Sam. Although we have reservations about the consultant he had also agreed the positive moves forward.

Sam was fine while we had the meal but when we arrived in the meeting room he walked straight though, out of the fire-exit and was striding off down the road purposefully walking to nowhere.

It took a while to get him back.

Maybe he's had enough of meetings for one day.

But he came round and seemed to enjoy the meeting thought we left before the end.

And he arrived back on the ward seeming quite settled -
and we drove home exhausted!

Sam was due to come home at the weekend on Saturday.

Then he phoned Friday morning - he seemed to be expecting us.

So with a bit of negotiation we arranged for him to come home on Friday night as well - even though we had planned to go out. Sam was keen to join us.

It all went fine until Saturday evening as we were getting ready to go out.

Sam popped out for a cigarette and then when he came back in ...

His eyes were so wide. You could hardly see his irises because his pupils were so big. He chattered away about this and that that we could make no sense of. He was excitable and difficult to direct. Perhaps not a good idea to go out after all. Jane popped along to take some promised gifts and give our apologies and picked up a take-away on her return.

I put on some quiet music and tried to talk with Sam calmly.

He settled a little. When Jane came back with the food he ate a little then decided he needed a rest and snuggled on his favourite sofa.

It was about nine o'clock by this time. At ten we woke him to give him his medication then suggested he might like an early night.

I stayed awake for a while expecting a possible long night but Sam settled and stayed asleep.

He stayed asleep until past midday the following day. He'd said that he had been up all the previous night though nobody had mentioned this to us.

We'd woken him in the morning for his medication. Usually he will at least get up for a cigarette but this time he slept right through.

When he eventually got up he said,

"I wasn't too good last night was I?"

And that was that.

From then on he was fine all weekend.

We even managed a couple of half games of chess.