'schizophrenia'

- a carer's journal

I had just finished writing last night's post. I'd had a cup of tea and was locking up ready for us to go to bed. As I locked the door there was a banging on it.

"Hello!!! It's Sam! Let me in!!!!!"

So we did.

He was high and very sweaty. It seems he'd got a bus into town then had run five miles from there to us. It's his birthday today. he wanted to make sure he was spending it at home.

So we rang the ward. They had to contact the police. We didn't want to take him back that night - or i the morning. Everyone was very reasonable. The police said as he was in a place of safety they saw no reason to pick him up. The ward were happy for him to stay over and continue with his leave in the morning. We had a little spare medication so we would get by.

So all we had to do was to get Sam to bed!

It took some time. I was exhausted and Jane took over. I think it was past three o'clock though when Sam finally settled. He had been very confused until then.

In the morning he awoke after nine. I asked how he was and how he's slept. He said, "I was totally mad last night wasn't I?"

Suddenly he had come round again and was very sane. The rest of the day went well. Sam was as well as he has been for ages. He enjoyed his birthday, his presents, being with his grandparents and sister - it all went well. Early evening he started to seem more restless and confused but doing some art work with his birthday presents helped focus him again. He eventually returned to the ward quite happily.

It's Sam's birthday tomorrow.

He phoned this morning and seemed well and was talking about it. He had a good afternoon - went swimming with his named nurse - and phoned again.

We'd aranged to pick him up in the morning and have a nice day.

Then late this evening we get a call to say he's gone over the wall again.

So we wait.

Again.

He's 28 tomorrow. So much of his young life stolen by his illness and the system. Perhaps that's what he's thinking too and why he's run away again.

It was Sam's tribunal today.

We got there at the appointed time - 10.00 this morning. Sam's care co-ordinator fro the Assertive Outreach team was there but of course nobody else so we chatted and waited for half an hour. Part of this was good news in that Sam's solicitor had come and was talking with him. He had a quick chat with us before we went through.

So from being told last week that we and Sam's solicitor was not welcome - suddenly we were all there. So that was good news.

Everyone introduced themselves and Sam's psychiatrist was asked to start. he began by saying that Sam had a mental illness and ...

So Sam said, "I'm going now," and got up.

I followed him as did his nurse. We persuaded him to go back just to say his piece. He did so and answered questions from his solicitor who is very good. Then he left saying his solicitor would speak for him. he was confident and doing what he could cope with rather than sitting through a long tribunal that would distress him. He was being very sensible.

I stayed out with him and we sat and chatted for a bit then went for some tobacco then waited again for them to finish. At last they came out but we then had to wait for the decision. Sam wasn't bothered about that - he was hungry now and wanted his lunch. He had his priorities clear.

Eventually we were called in and Sam was told that because of concerns about his safety they felt he should stay there. They were confident it was a good place for him where people were trying hard to help him.

"Yes, thank you," said Sam genuinely then rushed out. He wanted his lunch.

Sam's nurse rushed after him to try to ensure he was okay. But Sam doesn't talk about his feelings. It's perhaps part of the problem.

So we went for lunch. Then to buy some swimming trunks for Sam as his nurse had said he would take him swimming tomorrow.

Then back home.

Drained.

And the phone has rung all night ...

Jane phoned the ward today and after much messing about someone asked Sam if he wanted us at the tribunal tomorrow and he said ...

... yes!

So that's ok.

We've got nothing desperate we want to say - but it's the principle. They seemed to be trying to drive a wedge between us and Sam. That's not on.

We're still not sure if Sam's legal representative will be attending.

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

Earlier this week there was a great report on BBC Radio 4 about football and mental health. For a week you can listen to it here.

I'll try to save it somewhere else so it will be available for longer.

PS

I still have't replied to the kind emails I received before the weekend. I have had more since.

Thank you all.

I will try to reply soon.

M

I'm back from an invigorating - if not quite relaxing weekend but have returned refreshed. A break is good to get away. I found I wasn't thinking about the day to day issues about Sam but just the whole thing still came back to me on several occasions.

But I did manage to forget about the current events and just try to switch off from home and enjoy myself.

So I came back full of myself with lots to tell which Jane listened to patiently before bringing me down to earth with the story of the weekend. Nothing drastic. Sam had been up and down when he came home for the day on Saturday - but it had gone OK.

Sam seemed fine though about us coming to the tribunal next week. he was keen for us to attend. "Anyone can come."

But today Jen phoned to see if we could have copies of the reports. We only ever get them if we press hard and usually not at all.

They say that Tom's solicitor visited and Sam refused to see him. That is unlike Sam. He said today on the phone though that he could attend the tribunal too. "Anyone can come."

So Jane is going to phone again tonight when Sam's key nurse is on duty to try to sort this. The tribunal is on Thursday.

I don't want to go.

I do want to go.

I don't want the stress of the conflict if they don't want us there and the emotional impact of the event.

I do want to be there for Sam.

I'm a bit exhausted after yesterday. And it was mostly phone calls!

A call from Sam's care co-ordinator first of all. How did we think things had been going?

I thought it was because of recent events but ...

... no it's just that Sam has a Tribunal due and he has to write a report.

Did we know?

No.

He mentioned that Sam wanted to represent himself even though he has a very good legal representative.

I phoned Sam's solicitor and left a message on his voice mail.

Later we got a call from the ward. It wasn't just his solicitor that Sam didn't want there. It was also his parents. Of course Sam hadn't mentioned anything of this to us and really hasn't been well enough recently to discuss it sensibly.

Jane had a long chat with Sam's care co-ordinator. She was eventually persuaded that it might not be a good idea to see Sam this weekend because of the danger etc. Danger?

I rang back later to say we would like to see Sam this weekend if he would like to see us. It's as if they are trying to drive a wedge between us. We've seen it happen in other families too. Training of psychiatric nurses includes elements that say that families are most often part of the problem. So they try to exclude us, to ease us out. It's also then so much more easy and convenient for them.

There will have been a ward round meeting about Sam this afternoon. We asked for Sam's named nurse to give us a ring afterwards. He may have been busy or going off duty. However given the circumstances I don't think it is unreasonable to expect someone to have phoned us to let us know the outcome of an important meeting. it was possible or even likely that Sam's leave entitlement would have changed because of his threats to us and to himself following his absconscions.

But has anyone rung? Do they think it is important?

So we wait again, worrying they will think us overprotective parents if we ring again tomorrow just to find out if we will see Sam this weekend or if he wants to see us.

At the end of yesterday I wasn't so much worried or upset. I was just totally exhausted.

I'm going away this weekend. Jane hopes to see Sam at least one day.

I hope the break might refresh me.

Several readers have written to me kindly recently. I'm sorry I haven't replied. I will try to do so on my return.

Oh, and in the middle of it all I had to go to the dentist - but she was very gentle with me!

We didn't pick Sam up on Friday as usual. We'd had problems with the car so we said we'd collect him on Saturday morning instead.

In the end the car was sorted out early. We could have picked him up on Friday afternoon but we left the arrangement as it was. I felt a little selfish and guilty. But we had a nice evening with a friend who we hadn't seen for a while. We couldn't have been as relaxed with Sam there - though he would have enjoyed meeting this friend again.

Sam phoned early-ish on Saturday morning.

"Yes, Sam. I'm on my way." I replied as I set off to get dressed.

Sam seemed good and we had a good day. He went out with his mum for lunch which worked mostly okay - except for losing his jacket and a lot of confusion finding it given he had no recollection of leaving it where he had climbed into a basement when he was supposed to be just popping outside for a quick cigarette.

In the afternoon I took him out for two walks. He was a bit distracted. Then he started talking about death and suicide and announced he had nothing left to live for and was seriously considering it. So we talked ...

He has talked this way before but never attempted it. The main danger seems more where he puts himself at risk rather than through deliberately trying to take his life.

Dinner went fine and early evening. We even played chess. Then he wanted a walk again and that was fine too. He even climbed a bit but in a sensible way.

Then towards the end of the evening things started to go awry. Late evening is often a difficult time with him. We've sometimes wondered if taking his medication has an influence but this was just before his medication was due.

He became very antagonistic towards me. Confrontational over nothing. I tried to respond for a while but recognised the state he was getting into and suggested he talk to Jane. Sometimes if he gets like this with one of us he is okay with the other. But he was antagonistic with her as well and ran off.

I jumped in the car and caught him up. He was on his way to some local rocks. To jump off he told me later but they are not so very high.

"Hi Sam! Jump in!"

And he did.

So we drove back.

Jane was waiting in the garden. We had only just left.

Sam jumped out of the car and pushed Jane to the ground. She fell and hurt her lower back and I took time to pick her up while Sam rushed into the house.

He'd gone up to Nell's room at the top of the house. He planned to climb out of the window and jump from the roof but realised he would only seriously injure himself but not be killed. So he came back down.

I coaxed him into the car.

"Right let's go back to the ward Sam."

And we did.

I was worried he might jump out or do something else stupid and/or dangerous. I drove via the country route rather than through town as I had to stop less often so didn't leave as many opportunities for him to jump out and run off. Alo there were fewer dangerous places to run off to.

At the start the conversation was difficult and I was worried but he calmed a bit. Then he became antagonistic again but then calmed and seemed to be enjoying the conversation. After about 45 minutes we were back at the hospital ward. He suddenly realised where he was when we were a few minutes away. I was worried he might refuse to go in or run off. But after a long pause he was ok.

I took him in and drove back home. Another 45 minutes. This time on my own.

Some more of Sam's pastel pictures from the weekend:

We had a lovely evening out with Nell last night. She paid which made it even better!

It was good to have some time to talk about things important to her for a change.

Earlier Jane had talked to Sam's named nurse. She sensed a lack of optimism compared to how it has been. That enthusiasm and optimism for making a difference might be disappearing.

It's a long haul. People need to know that.

We were a bit unsure about Sam coming home last weekend.

We'd both felt really depressed on Friday. It's been going a bit wrong. Two absconscions. Very psychotic during the week.

So what next - short term, medium term, long term?

Not that anyone would talk to us about it.

We were concerned even about whether we could cope with him this weekend if he was very unwell. At hospital he is now only allowed leave with two members of staff - which will mean he doesn't get leave and they will never be able to spare two members of staff.

We wondered about just having Sam stay for the day or maybe jut one night.

In the end Jane went to see how he was. He seemed fine. So she brought him home.

He's not brilliant but he's been better this weekend than on many previous visits. He even beat me at chess - yes I know that is easy but it was just a slip and anyway I beat him more times, so there!

We had a lovely day out on Saturday. At times Sam has been very well.

But he was horrible with his sister on Saturday evening. Perhaps it is just jealousy that she still has a life but there is a fixation there that makes it so difficult for Nell.

We're going out for a nice meal soon. Just Jane and Nell and me. We could do with more time just for the three of us so that Nell knows that she is important to us as well as Sam.

The weekend went well. I'll say a bit more about it soon.

In the meantime here are a couple of pictures Sam drew today with pastels ...

Jane spoke to the ward manager on the phone this morning.

Sam sounds to be very psychotic at the moment. They've not put up his medication but are clearly concerned about his security.

We'll see about him coming home this weekend - but sometimes that can help him.

Usually when Sam has gone missing he's got it out of his system for a while.

But not this time.

He went out with his psychologist this morning. They went into town to a cafe for a snack.

"I'm just popping out. Back in five minutes ..."

But Sam's psychologist - who is a good friend of Sam and us - was suspicious and went out after him. He walked alongside him.

"I don't know you," said Sam and started to run.

Soon he was lost in the town.

When we heard I drove into town and tried all the usual places. The bus station several times as we had been lucky there on Sunday. I spoke with the security guards who hadn't seen him.

I went to a pub in a less than salubrious part of town where Sam has been before to get drugs. Outside were a group of men drinking. Inside more men in corners and a woman sitting alone at the bar and the smell of cannabis as I went in - but no Sam.

I even drove out to the motorway in case he might have taken it into his head to walk to London. (He's tried before!)

But no sights of him. Just lots of phone calls from the hospital and the police. Not that the police do much other than fill in the paperwork.

Then tonight we were thinking of going for a short walk in the evening sunshine to try to settle our minds when the phone rang yet again.

It was from a ward of the local psychiatric hospital. Sam had just walked in. He's been admitted there many times in the past. What was Sam's status now? They could tell he wasn't well. So I explained and they assured us they would sort out all the rest.

So it was a relief he was safe - but a mystery as to why he had walked into another psychiatric hospital. We assume this is good news - that he knew he needed that support and could get it there from people who would understand. But perhaps it was the other patients he wanted to see. Either to "help" or because he knew they would "understand" in a way that the rest of us can't.

Longer term this has other implications.

There have already been comments from his current ward that perhaps he may be inappropriately placed. So another move - to somewhere more secure that will make him worse again?

Or will they take the medication route - i.e. increase it when we have been trying so hard to bring it down?

They may see his two recent absconsions as evidence that he is more poorly and either shouldn't be there - or needs to be on higher or different medication.

But why should running away be seen as evidence of illness? Isn't it what anyone with spirit would do - to try to run away from being detained when you have done nothing wrong other than have troubling and difficult thoughts?

I had no threats from Sam this weekend. So that's a positive.

We had a great day on Saturday. We went to a beauty spot that Sam had suggested this weekend and last. There is lots of climbing there which is why he likes it. I was rather cautious about going but in the end we decided and went with it. We had a picnic when we arrived then Sam wanted to go off exploring. So we said ok and arrange to meet in half an hour.

Although he hasn't a watch Sam arrived at the agreed spot exactly on time.

We chatted and walked for a bit and then arranged for Sam to go off again and agreed another meeting. It was all a bit worrying as there are high rocks thee to climb on. But young children climb there safely. There is some proper rock climbing but Sam wouldn't be able to find that anyway. Still later on I went looking for him but it worked out pretty much okay. He was a bit negative towards me at one time but otherwise it was a great day out in the sunshine. We stopped on the way back and had a cup of tea by the river.

Each evening Sam managed to get off to bed okay without any confrontations with me so we were feeling quite positive.

On Sunday morning he was up about 7.30. I came down to join him. He seemed well.

He had a few cigarettes and was pottering about. He went upstairs for a while then came down again and went out - I imagined for a cigarette. I looked outside to check but he had gone. I got dressed quickly and searched for him in the obvious places then further afield. Again no sign of him. He seems to have a knack when he goes off of disappearing without trace.

I drove around all the possible places including the bus and train stations in neighbouring towns and the routes to them. No luck.

I came back home and saw Jane and suggested I went back to the main bus/train station. Jane said she'd like to go as it was better than just sitting.

I decided to stay at home in case there were messages. We'd had to inform the hospital and they would contact the police. Often the police come round to visit in case we are harbouring him.

Half an our later I got a phone message from Jane.

"Hi, I'm with Sam here. I'll just put him on."

"Hi Sam how are you doing?"

"I'm fine."

He sounded okay and together.

"Is Mum taking you back to hospital or bringing you home?"

"No. I'm going to London. I've got a ticket."

And he had. He has survived a few overnight escapes for a few days but nowhere like London. It would have been so dangerous if he had got there. Jane had got him in the car to go and look for a cafe to get a coffee while they waited for the bus. He still thought he was going to London.

She did well to extricate him from people waiting at the bus station without too much of a fuss. I was worried about her getting him home but she managed it.

He seemed very high and hyper as he came through the door but we managed to calm him down gradually and wok towards explaining his position.

He was wearing two odd shoes. It seems he had found an odd training shoe at the side of the road and liked it. So he took off his own decent one and swapped it for the found one. We drove back that way when we took him back to hospital but it was no longer there. I did notice a black dress shoe destroyed by traffic around the same place. Perhaps someone had swapped again.

Eventually Sam became calm and came to realise he was not going to London. We tried to discuss the logic of what he had done and how it had worried others and caused trouble but I'm not sure how much of it sank in.

Legally it seems we should have taken him straight back as he was in breech of his leave conditions but the ward nurse agreed it was best to get him settled first. We had a call from the police and they were happy with that too.

It's a bit mad though that we had to get Sam well enough to take back to hospital!

I picked Sam up a while ago and brought him back home. He's quite well in a psychotic kind of way - if you know what I mean!

I must admit I'm just a little nervous after last weekend. It must have shaken me a bit more than I thought.