'schizophrenia'

- a carer's journal

Sam phoned again this morning. Before nine. So I was still in bed. There was a beep - beep from the payphone and I called him back.

He was quite coherent. Talking sensibly. Looking forward to his breakfast.

He likes the food on this ward. Much better than on the other wards where he has been detained.

He's been phoning several times a day since he's been moved to the new hospital. Maybe it's because he's so far away now, maybe it's because the've changed his medication - again(!), maybe it's because he's missing us, maybe it's because he wants to have a go at us, maybe its because he's lost and confused, maybe its because ...

*sigh*

Eventually I got up, breakfasted, showered and dressed. I did my relaxation and my excercises for my back. It didn't work any more than usual but after a while the dizziness and aching reduced.

Soon after Sam rang again. The beep - beep from the payphone.

"OK Sam!"

And I called back. This time he was more confused, more agressive. Why had we put him into a mental home? How could we do that? Didn't we know he was enlightened? That's when it had all gone wrong. Then he talked of being attacked by staff the night before but couldn't answer any questions about it - just started talking about being able to do magic. He may have spat. He may have been restrained. I'll never know.

"I love you Sam."

"I love you too dad."

In the afternoon I took mum to pick up my dad from hospital. He's been in for a few days having picked up an infection during a hospital examination. As they can't find anything serious they are letting him out - even though he still has a high temperature. When I collected mum my Columbian sister in law said, "Don't come back without him!"

We stopped off on the way at Asda for some bits and pieces. We'd been to Asda two days ago to shop and my mum had been on her own to the Co-op in between. "Why don't you do all your shopping in one?" I enquired, frustrated.

"I forget things."

When we got dad home his few weeks old grandson - soon to be disappearing to Columbia - was awake and gazing around. He had a card for his grandad welcoming him back home. Dad was thrilled.

I think it will be a long time before we get Sam home again.

Hospitals are dangerous places.

Sorry if this is a bit rushed - well it usually is, I guess.

Visiting Sam tomorrow. It will probably take ten to twelve hours.

He's been phoning lots - but sounds quite good. A result of a reduction in his medication - but it's how he controls all the thoughts and ideas flooding back into his brain. If he can't cope no doubt he'll be back on the meds again.

And my dad doesn't seem too bad. Fingers crossed.

It never rains ...

... but it pours.

I'm sure I've written that on here before though.

My dad was taken by ambulance into hospital this afternoon. He has an infection contracted during an invasive medical examination in hospital earlier this week.

In UK hospitals at the moment there are infections that are resistant to antibiotics. It can be more dangerous to go into hospital than stay at home.

- And that's not counting psychiatric hospitals!

............

(I'm aware I've got lots of emails to reply to. Sorry if I've not been in touch. I'll try soon.)

If you remember that hurried decision.

well ...

Late yesterday afternoon Jane got a phone call to say that Sam was being transferred to a psychiatric intensive care ward half way across the country. There were no places nearby. So much for maintaining close contact as we had been promised the day before.

I was on the ward with Sam. Did anyone tell me?

Tick
A - Yes
B - No

Well done all of you who ticked "No". Did anyone tick "Yes"? You've not been reading this blog carefully enough.

Did we have any influence on this decision??? I'm not going to do the tick A or B again. You know the answer.

It will take us four hours each way driving to get to this hospital if traffic is okay. Once the holiday season is over it could take longer especially if we overlap with rush hour.

Why is Sam there?

What is the plan?

(Plan???? - What a naive idea!!!!)

When I got back from seeing Sam yesterday I was upset. Sam had been okay to start with - despite we weren't allowed off the ward and I'd had to plead to be allowed into the smoking room with him.

There's part of him that really wants to get better. I was almost in tears as he described that being locked up was part of what made him mad - knowing that he was going to be sent to a secure setting. But just before I left he became agitated. I was mad. I was evil. I killed people. He started to be aggressive with me. I left.

I got back, upset, to find out about Sam's move.

Jane had just got off the phone. We packed some clothes and Jane went back to see Sam. Nobody had told him anything of this yet. The psychiatrist said she wanted to do it.

But hadn't.

So nobody else had dared.

Soon after Jane left to see Sam he phoned. He'd just heard. He was really logical and sensible.

He was hurt, worried, upset, and frightened by the potential change.

"But I'm good at transitions."

Actually - he's not. But he was being brave. Strong. Sensible.

I'd worried he might go bezerk and either sneak out or just break out - or try to.

He held it together most of the time with Jane. Jane managed to get agreement to go with staff (four of them) and Sam today.

The new hospital?

Have they read their own bumph?

Jane wasn't allowed on the ward. They'd clearly never had parents or carers coming and asking questions.

The doctor was summoned and did come and see Jane.

He wants to reduce Sam's medication to a minimum - but all at once?

Maybe not as there are others PRN - as required - which of course the ward staff will give him all the time and nobody will monitor.

Jane came back very tired tonight.

I was the angry one saying - we'll do this and then that and if that doesn't work we'll try the other.

Jane just sat there drained.

Since I've been unwell Jane has taken a lead on all this.

Maybe soon it will be time to pass the baton.

But what happens when we are both totally drained by it all.

Is that what they are trying to do to us?

The other day I mentioned Sam's adventure on the truck to him again. We were sitting in the 'visitors centre'.

"It was a cry for help," he said ironically with a glint in his eye.

We looked at each other and laughed.

"Why didn't you just shout 'HELP'," I asked?

"HEEEEELLLLLLLLPPPPPPPPPPP!!!!!!!!!!!!!!!!" He shouted on the top of his voice.

We laughed again - but nobody came to rescue us.

Sam talked about life on the ward being like living in a waiting room.

You can see immediately what he means. Nothing to do. Putting in time. But waiting for what?

During the meeting today Sam's care co-ordinator said,

"Psychiatry is an art rather than a science."

Fine.

It's just that we're still looking for someone with imagination and creativity.

A phone call at lunchtime from Sam's care co-ordinator. Could we make a meeting early afternoon?

It sounded a bit of a rush to me. Something was happening. Jane was calmer.

Sam's psychiatrist was there. She had just returned from holiday. Very brown. Very serious.

What a first day back at work!
- Finding out about Sam's escapade.
- An interesting meeting with Sam where she discovered even more worrying aspects of his adventure than we had yet heard (a climb on some steep rocks, the fact he had been on the back of the cab of an articulated lorry - ready to fall beneath the wheels of the trailer and so on.)
- The ward complaining that they had to keep the outside area closed to the detriment of other patients to ensure Sam could not escape.
- Making a decision about what to do next - the easy bit. Take the "sensible" route and lock him up in a more secure ward where he cannot easily escape and harm himself.
- Meeting with Sam's stroppy parents to try to explain her decision.

So as you can guess we were not best pleased. I understand the decision. If Sam was to get out again and have a fatal accident and they had not been seen to take appropriate action they would be seriously criticised. It could affect people's careers. However there was a time when Sam was living "in the community" where he had put himself in such danger and was not even sectioned. There's no consistency. But now people are covering their backs. Someone's just got back from holiday and has had to make an instant decision to what she has seen as a crisis.

Instant, hurried decisions are not the best way to ensure good long term plans.

Sam had seemed kind of a little bit better over the last few days. These things are all relative.

Today Jane visited Sam and he was not at all well. A nurse asked to talk with her - but was positive. He understood why Sam was litteraly climbing the walls - now that he's not allowed out at all. it's recognised the current situation isn't working for him - but nobody has any alternatives that aren't even more restrictive.

We've ben back for only about three weeks I think. before that I'd spent the best part of four months in France. That all seems an age ado now.

Jane asked a nurse yesterday to write down for her what medication Sam is on now.

It was a long list.

Is is only a few weeks ago that when we came back from France the doctor was looking at a minimal medication regime? Time on the ward has soon put a stop to that. To be fair, they are trying to keep him safe. That is affecting everyone on the ward though.

We're keeping a low profile.

Despite the medication Sam is making little progress. Stability would be better.

But yesterday and today he has been a little more calm and logical. He mentioned his adventure on the back of the truck today. I asked about it. He said it was a "cry for help" with a big sarcastic grin! Then why didn't you just cry for help I asked.

"HELP!!!!!!!!!!!" he shouted on the top of his voice and we both dissolved into giggles.

When he regains his sense of humour he somehow regains his personality and humanity.

Last Thursday he'd gone before we'd had breakfast.

Then the ward rang to say they'd had a phone call form a construction company. A member of staff was going to pick him up. I think the police have got fed up of being Sam's private taxi service. They seem to reckon that if the hospital can't keep him on site then maybe they should sort it out. Perhaps they have a point.

Then there was a phone call from a distressed woman. Sam used to see her for Reiki sessions. He'd just appeared at her house. She was still in her dressing gown, she was due to go to a funeral, her son was hiding in his bedroom. It was no joke.

We collected Sam from her house. She was not best pleased.

Then yesterday after Sam had been discovered hanging on to the back of a truck he went into someone's house. He said he was thirsty and the door was open. He couldn't understand that people might be frightened by him turning up in their kitchen.

This came out at a meeting with the ward staff and the relief psychiatrist - Sam's current one is on holiday as is Sam's new care co-ordinator. The ward want a review. They don't think they can cope. They're doing better than most of the wards Sam has been on.

The doctor was very good. She thought he was on too much anti-psychotic medication rather than too little. She made a small adjustment to the "mood enhancer". I think I could do with that as well.

She agreed that Sam could continue with his leave; that stopping it would only encourage him to take leave from his own devices.

But this morning they'd had another meting without us to change their minds. He's being kept on the ward for the moment though it will be reviewed daily. They wanted to get him involved in lots of activities. As they have managed to negotiate some extra staff it has a logic - but we'll see.

Did I say, "What a day"?

We've just had a call from the ward.

Sam's on his way back - being taken by police from a neighbouring town.

A truck driver speeding down the motorway was made aware of him clinging to his truck. He pulled in and Sam ran off into a nearby house.

Yet again he's lucky to be still alive.

The nurse who called was the one who has been so nice, so supportive, so caring ...

... but they will have to reassess the situation.

Does this mean he's going to end up back in a secure ward again?

I've just got back from a short walk. The police had not long left. I was about to go out as they arrived. I needed a breath of fresh air.

Sam's gone missing again of course. They even asked for a photograph. They must really be looking for him.

He's been missing so often it was a bit of a surprise. Though the last few days he hadn't left the ward on his own. We'd managed to get him four hours leave a day. He agreed not to escape as long as he could come home with us each day.

We stopped for a walk on the way back today.

As we got back to the path without warning Sam wrestled me to the ground and held me down with an arm round me. I couldn't move. Eventually he let me up only slightly scraped and we went back to the car. The devil had told him I was fighting him and he had to fight me.

Although he has often threatened me with violence before it is the first time he has ever carried it out.

I was a little shaken.

And England failed to beat Australia at cricket in the test match. What a day!

Early yesterday morning we got a phone call from Sam.

He sounded very down and talked of climbing out again.

Jane phoned the ward, told them of his state of mind and warned them that he might try to leave.

Half an hour later the nurse phoned back. Sam had gone. Too quick for them to catch him.

A little later he came through the door. A taxi was outside, its driver waiting to be paid.

"You can take it out of my money, dad."

Money? What money?

We phoned the ward and asked it Sam could stay a while. Jane was going to a meeting and my car is in the garage receiving the last rites so there was no easy way to get him back until after lunch anyway.

It was nice to have Sam home. He couldn't settle for more than a couple of minutes and helped himself to some beer whilst I was in the bathroom but all in all it was okay. He was pleased to be home and wanted it to go well.

He had moments of lucidity.

"You know when someone has a nervous breakdown - it might be a little thing that sets it off. A glass might smash and it's like the straw that broke the camel's back. Well for me the glass keeps smashing again and again and again."

Sam wanted to go for a walk to an area very close where there is some rock climbing. We compromised by walking round the block together.

As we came to a corner a police car was going slowly past the end of the road. It pulled in and stopped. A policeman got out.

Damn. They will have been informed about Sam's absence. Maybe they had come to pick him up.

The policeman walked straight towards me as I got to the corner.

He clearly wanted to say something to me. I stopped and faced him.

"Excuse me," he said.

He wanted to get past. I was blocking his way. Maybe he was on his way home for his lunch.

I moved aside and we went home, somewhat relieved.

Later in the afternoon after we took Sam back he was having a really sensible conversation with his named nurse and phoned us to tell us about it. In the evening he phoned again a couple of times talking really sensibly. We'd asked if Sam could have some longer leave with us. Today seemed to have helped Sam - maybe more time away from the noisier more aggressive atmosphere of the ward would do him good.

Staff seemed keen to support this.

I suddenly discovered my tiredness as I first stepped onto English soil again. I got out of the car and found that my legs were weak and aching. I put it down to weariness from driving but it didn't go away but turned into the mild flu-like symptoms of my ME. I unpacked the car slowly.

We'd already stopped off to see Sam on the way home. He'd phoned his granny and grandad early in the morning to say he was out of tobacco so we'd called in to drop some off. Jane popped in while I stayed in the car. They went to look for Sam - nowhere to be found. He was missing again.

I was still slowly unpacking the car much later - it still contained all our things from when we went to France four months ago - when I heard some singing from someone strolling along.

Sam!!!!

Hi!!!!!

We hugged.

Jane - look who's here!

She came out and more hugs.

Sam couldn't settle for more than a couple of minutes. He was saying some very strange and angry things. He was very unsettled.

We managed to give him some lunch and get him bathed and changed.

He was going to stab himself if we took him back.

We got him in the car. On the way back he suddenly started wailing and banging the seat and shouting. I was evil. We were all evil and so on and so on ...

He only tried to get out of the car a couple of times but I'd locked the doors and eventually we arrived at the hospital.

On the ward he immediately started acting up. He became angry. He said I was evil again and started taking up threatening martial arts poses. He wouldn't be calmed and I was seriously worried he was going to hit me. Staff around became concerned. They were wondering how to react. Jane and I being in the way maybe slowed their reactions.

Although I was worried by the level of Sam's aggression I opened my arms and moved the short few inches between us.

An alarm was set off. The number of staff on the corridor immediately doubled.

I took Sam in my arms and hugged him and he hugged me back. The aggression had almost gone but was still there. He was aware of the suppressed aggression of staff now surrounding us. He moved apart for a minute and started to talk aggressively to me again. I pulled him to me as a posse of staff from the adjacent ward appeared from round the corner. The cavalry had arrived. But I held him close and he held me back.

The staff backed off.

It was calm now.

If we hadn't still been there he would have been pinned down and injected with tranquilizer and additional anti-psychotics. It has happened before.

Jane drove home. My few reserves of energy had long gone.

This evening we had a call from the ward. He'd gone missing again.

Tonight we've had some heavy rainstorms. Where could he be?

Just before going to bed Jane rang the ward. Sam had just walked in. Would we like to talk with him? He apologised for trying to fight with me on the ward. First he'd gone to the bus station to try to go to a nearby city to visit a friend but thought better of it. Then he'd gone round a few pubs until he saw someone he knew and cadged a sip of beer.

He's safe and back on the ward.

And tomorrow ...

:::::::::::::::::::::

But yes. We had a lovely holiday thank you. We really did. Nice and quiet and relaxing. Part of it alone and part with some kind friends whose house we were borrowing. A few lovely memories include a row down the river as far as the old bridge with late afternoon sunshine on the wooded hills; a lovely lunch to celebrate our anniversary; a vernisage in a cave that had previously been a protestant church followed by a stroll through some mediaeval backstreets just ripe for development(!); an international party where we made new friends from Holland and France and from just down the road from where we live in England as we ate some delicious food and watched the sun setting from the terrace as we argued friendlily about European politics in a language I barely understand; and just sitting in the garden, lolling about, watering the plants and reading some exceptionally good books.

I'm sure there's been lot's to write about. For instance yesterday Sam escaped from the ward, went home, broke into the house, phoned some friends, helped himself to all the beer, got drunk and was eventually picked up by the police.

Lots more - such as medication issues, changes in staff working with Sam and so on.

But I'm on holiday.

So I'll save it up for when I get home early next week.