'schizophrenia'

- a carer's journal

On Friday night Sam slept hardly at all.

He'd seemed quite well despite a short "blip" in the evening but when it came to getting to sleep ...

Sometimes it's the three card trick.

I'll get him settled, then after half a hour he comes down for a sandwich.

I'll get him settled again, then half an hour later he comes down for a cigarette.

Then the third time I get him settled after half an hour I creep quietly to bed.

But on Friday he then came down again for a cup of tea and a chat.

Then again for another cigarette - whereupon he was sick all over a new pot of plants outside.

Then after another half an hour for another sandwich!!!

Then later for another cigarette.

I eventually climbed to bed thinking he was settled but from my sleep hear him talking to Jane. He was up again. I decided to let her take over now and drifted back to sleep.

Saturday evening was the same. He'd had a good day but just couldn't get to sleep. We were up for ages. Eventually at nearly three o'clock I thought he was asleep but again he woke Jane up and seemed to be awake for most of the night.

In the morning we were trying to catch a little sleep when I heard the front door open. I dashed down in my pyjamas but he was gone. I quickly got dressed and followed where I thought and hoped he might have gone.

I found him there stripped to the waist in the cold morning light, rock climbing.

We were there for some time before he agreed to come back and we got home with me exhausted but Sam buzzing. Jane was at the computer in her pyjamas so I went back to bed. Later Nell came down and took over.

Then Sam came to our bedroom.

"Can I go home now?"

By home he meant the hospital ward. It's the first time he's called anywhere like that home.

"If you want Sam."

We chatted a few times to make sure but he was keen to get back. It was boring here with sleepy people and he wasn't looking forward to lunch with relatives.

So I took him back.

With the lack of sleep he was quite high but otherwise well.

We rang later and with difficulty they'd managed to get him to rest and he'd slept for an hour and a half before they woke him for tea.

I'm very tired now but nowhere near as tired as I would be if we'd had Sam with us all day.

I was reminded though that when Sam disappeared in France it was after he had been awake like this all night.

After the power cut on Wednesday I wrote a letter to Sam's consultant psychiatrist.

I expressed concern that the decisions of the CPA meeting were not being carried out, that Respiridone was being prescribed when it did not suit Sam, that there was no recognition that we might have valuable information to support such decisions.

I requested that the CPA meeting be reconvened and that Sam not be administered respiridone until after the meeting.

I faxed it to the hospital with a request that the consultant be given it urgently.

Jane phone the next morning. It is a private hospital and they just buying him in so nobody knew where he was that day - which golf course he was on? They would try to contact him. By the end of the day we were informed that we were invited to a ward round next week and that "of course" the Respiridone would not be administered before then.

I found as the day went on that having started with tension in my back and shoulders this turned into general aches and pains across my body, I lost my strength, I started shivering with a slight temperature. My ME symptoms had returned. I didn't feel like it but I went out to a concert that we had tickets for. I had the best part of a bottle of wine there also and enjoyed the concert and probably felt slightly better. The we went on to a pub to pick up Nell. She was with some friends watching a performance by some other of our friends so we had another couple of drinks and a laugh and a chat and I was enjoying myself.

I felt a lot better. They say that the endorphins from pleasure can counteract the adrenaline and cortisol from stress that cause the ME symptoms. It seemed to be working.

When we got home Nell and I cleared out a kitchen cupboard throwing almost everything away as most was many years past the sell-by date. I must get drunk with Nell more often to finish the rest of the house!

But in the morning I had no hangover and felt a lot better. Perhaps it was the endorphins!

Though this evening Sam is back and believes there is evil in the house so I'm trying to get him to sleep. He is often troubled in the evening but seems better after a good sleep.

Though I can feel the tension in my shoulders becoming painful again.

Tomorrow will be another day.

I have just received an email from some carers who have published a book about mental illness from the family perspective.

We would like to make the general public aware of the serious associated problems faced by families, to provide these families with our support and sympathy, to remind the media and the lawyers of their power that can be used for good or evil and to sensitise the psychiatric profession to the wider picture and the danger of dogmatism.

I have not read the book but it looks interesting. More about it here.

I'm just so angry again tonight.

Sometimes I just cannot believe it.

I've just had a phone call from Tom's named nurse.

It seems that at ward round today it was decided that because he has been up and down recently they prescribed him another additional anti-psychotic - Respiridone.

This is despite the fact that he was first put onto Respiridone when he was initially diagnosed. On a small dose he put on huge weight gain. He also had aching limbs and spent most of his time comatose on the sofa.

Eventually he was taken off that and it was agreed not to try it again.

It is also despite the fact that at a recent CPA meeting where all the interested parties were present it was decided to reduce his medication gradually.

They then keep making the real decisions on their own ignoring the CPA meeting decisions. This would be the second change to his medication since the CPA meeting without the original medication decision having been implemented.

So I shouted and ranted and raged at the poor man. It's not his fault. Don't shoot the messenger. So I kept apologising then I kept starting shouting at him again! He was very understanding.

The trouble is if they don't get their way with this they will look at Clozaril again because, despite the fact a consultant cardiologist insisted he was taken off the drug immediately, there is no record that this was the case.

It's a good job Jane is out this evening because if you think I'm reacting strongly -just wait until she hears!!!!!!!!!

I think I need a drink.

I'll keep you posted.

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

And then we had a power cut! No electricity. So I had to save this quickly - fortunately I was on the laptop - and then drink red wine by candlelight!

Sam seemed to have been really well today - and so had I. We went for a long walk and he climbed a bit - just a little scramble alongside kids playing. He even came with me to the local small supermarket to do some shopping - though only lasted a short time before going to sit outside with a cigarette.

But even that is good. It's a measure of how well he is this weekend that I felt it okay to take him to the supermarket and was happy for him to sit outside on his own.

Last night when I went into the shop to get some milk and the paper and some tobacco for Sam I gave him money to pop to the chop shop next door to buy himself some fish and chips which he had asked for. i can't say I wasn't concerned - but he coped with it.

He's doing well.

I was tired by the end of the day but everything had gone well until the end of the evening when for no apparent reason Sam started having a go at me.

He'd suggested a game of chess then at my request set up the pieces. He had the board the wrong way round and I started to readjust it with him. There was no problem with this I thought. It's happened before and we've just reset the pieces. Then he started to go on about wanting to know the rules. Would I write down the rules? If he won the game had he won? "Won what Sam?"

"If I win the game have I won?"

"If you win the game you've won the game Sam. That's it."

"You're trying to trick me now. If I win the game have you won?"

I was trying to keep it light and good humoured but ...

"You're laughing at me now. You're trying to trick me again. If I win the game have I won?"

I couldn't work out if "winning" was something more precious in his thoughts than the game.

"You're being crafty with the pieces - you're a weirdo."

I was desperate to find a form of words that he would accept. He wrote down a statement for me to accept.

If I win the game then I have won.

He drew a box below it.

I ticked the box.

"So you mean if I win the game you have won. You're trying to trick me again with your semantics." He said he could smell fear and wanted to know where it was from. He knew it was because of my attitude.

Fortunately Jane was around and I withdrew. Though Sam was angry at that. When there is confrontation I feel it is better to withdraw from it and let things calm down.

A little later he was calling to me from the other room. He was setting the pieces up again. It was a challenge. I ignored his calls unsure of what was to come. He was getting himself hyped up. It had been a good day and now when we should have been getting calm before bedtime he was getting so upset about a major issue for him.

And I wasn't feeling too positive myself.

Sam sometimes finds the transition between hospital and home difficult. He was struggling this evening.

He had so much energy but was trying to stay grounded. He was aware of the difficulty and his attempts to manage it.

"I'm the son of God."

"No. I thought you were my son Sam."

"I'm the son of God."

"Well I'm very jealous that you should say that. I know you're my son."

"A sound told me."

"Perhaps it was delusion Sam? Perhaps..."

We've been away for a long weekend.

Of course there were worries before we went away. Sam comes home almost every weekend. The ward seem to think that there are more problems when we go away and Sam becomes unsettled. So should we never have a break?

So again we were made to feel guilty despite all the backup we tried to put into place.

We arrived back this lunchtime and listened to the answerphone. A couple of messages from Sam hoping we'd had a nice time - but he'd like to come home if it was all right with us. It was a pleasant request put in an amicable and reasonable fashion. It was Sam being well.

Jane phoned and had a mostly cheery conversation with Sam - apart from the bit here he was insistent on explaining how he could see into the future ...

... so from our brief holiday - welcome back to reality!

I picked Sam up for a few hours. He was relatively well but perhaps became less so. Maybe as he relaxed at home he let his thoughts take over - who can tell.

But Jane took him back and he was cheerful and keen to show her his room that he had been encouraged to tidy earlier today.

I've had another link today in the Guardian.

I've had several from them over the last couple of years.

Of course it is a compliment to be referred to in this way. I appreciate it. Really. Though it is equally a compliment when any blog writer decides to link to me.

But when the Guardian does this I get more hits. Many of them from mental health professionals because it is in Society Guardian that many of them read it.

It's great if they gain some understanding through reading the blog of the standpoint of a parent. So from that point of view it is good and I'm really pleased to get that professional readership.

However there is a danger as well. In fact it has already happened.

The last time the Guardian linked to the site Sam's care co-ordinator found the blog. Despite all the changes in names and details to preserve anonymity she clearly recognised us immediately.

She emailed me saying,
"I'm sorry to read on your blog that you're unhappy about things at the moment ..."

I nearly took down the blog then.

I wrote to her explaining that it wasn't an objective discussion of the situation. In a way it wasn't about Sam but about me. At least it was about my perception of the reality and I recognised that professionals would have a different perception of the same situation.

I asked her if others knew of the blog and if not requested her not to share it with them.

She was also the manager of the team.

She wrote back saying she had no problem with the blog and would maintain its confidentiality.

So it's still here.

But perhaps since then I have found it harder.

It became harder when family members started reading it - but professionals caring for Sam?

How can I be honest about my feelings regarding his care if I know they are reading it? Not because I am being dishonest - I'm just describing my feelings. Not because I feel I am attacking their professionalism. In the main staff have been professional. Effective - no, but professional - yes.

The blog is about the effect that the system has on families and about the effect of seeing a loved one in such turmoil has on families - and on how we try to deal with it.

On Sunday morning Jen rang the ward. - Yes Sam was fine. Jane discussed bringing him home and then asked to speak with Sam.

Sam did not sound very rational. He was also cross. He didn't know why his family had turned against him. He was thinking of contacting the police to make a complaint about his father's violence to him.

So, no, he didn't want to come home.

Jane spoke with him for a while and in the end he agreed that he would come home.

It was decided that Jane and Ellie would go and get him together.

Meanwhile I started to get an Easter Sunday dinner together for my parents and sister and all of us.

Sam walked through the door first when they got back. He walked past the kitchen door but I went out to him. He turned back and we faced one another and ...

... hugged.

We hugged for quite a while. Little was said as I recollect - but things seemed okay between us again.

My parents arrived immediately afterwards but Sam insisted he needed to go for a walk so I went with him whilst others finished getting lunch ready.

He managed to spend a bit of time with us at lunch but he was finding it hard. He did though enjoy the company a little.

We got through the day and the evening. I've forgotten all the detail now. I remember at one stage writing down some of the things Sam was saying - or was that last night?

Yesterday he was up early for him and wanted to go out. He was unwell and uncommunicative but I suggested we went to my mum and dad's where he livened up chatting with them and my sister. He was joking and laughing. He had a reason to be part of our world. We arranged a walk before lunch to a pub where we would have dinner. It started to drizzle hard - not part of the plan and we all got wet.

A delicious lunch was soon delivered at which stage Sam wanted to leave again.

We wandered off for a cigarette then returned and ate half the lunch. When he started talking to his granny and grandad about wanting to go to San Francisco to climb the Golden Gate bridge and then jump off to crush his skull on the floor that I decided it was time to take him away.

Once we were outside he as fine but we had a long walk back to the car.

Because he was good outside so we went for walks twice more - so I was exhausted by the end of the evening.

During the evening he was very up and down moving from complete coherence to total psychosis in a second then back again as quickly. By the end of the evening he was getting more and more psychotic so we tried to stop the conversation and had some calming music on. I lit a candle to distract him from gazing at my face.

He began to settle and became more calm. Eventually after several false starts we managed to get him to bed.

This morning?

Quiet.

Unsure.

Still not well but cooperative and friendly.

I had arranged a business meeting with some friends so Jane took him out after lunch and then back to the ward.

We're having a short stay away next weekend. Staff feel this sometimes causes a relapse in Sam. It has often happened he has not been well when we are away.

Fingers crossed.

Yesterday I picked Sam up. We'd managed to arrange an extended leave for the Easter weekend.

Sam arrived with his Key Nurse. I asked how Sam had been this week - knowing last weekend he'd been not too good for most of the time.

He was really well said the nurse. They'd been discussing why Sam had to be there at all.

Perhaps he was just trying to be positive in front of Sam but I could see in seconds from Sam's staring eyes and inane grin that he was far from well.

It was confirmed from the conversation on the way back.

"I ate an alien today."

It's difficult to choose the right response to such a statement out of the blue.

Sam was non-communicative most of the time when we got home.

Nell was upset.

As soon as she saw Sam her heart sank as she hoped the weekend would go well.

Then Sam was sat outside rolling huge joint-like cigarettes. He got angry at any discussion of this then he seemed to be crumbling a substance into his cigarettes. It didn't look like cannabis - more like a dried mushroom. Last weekend Jane had found him with something similar.

Sam refused to let us have the substance or discuss it. He wouldn't talk at all.

We threatened taking him back to the hospital.

He just refused to talk with is at all.

Having made a condition at some time one has to carry it through.

Sam gets away with most things here. He probably wasn't taking drugs - we'd phoned his ward and they thought not - but if he wasn't prepared to talk with us ...

We'd planned a nice weekend with Sam partly in mind. Friends were coming round for a dinner party. Sam loves the idea of a dinner party even if he can't fully engage in the end.

It was clearly going to be a difficult day.

There were conversations between Jane and Nell and Nell and me and me and Jane and ...

in the end we decided it was our turn to be selfish.

Sam had a place to stay. If he didn't want to be part of our home today then he could go back there. We'd said we would do it - so we would.

But of course Sam wasn't prepared to co-operate.

He wouldn't talk at all. He just slumped and couldn't be led or lifted.

At one tine I stood on his bed, blocking him from lying down on it as I knew we would never get him up from there. Later he accused me of violence for this.

We eventually managed to get him in the car twice. The first time he got out again while we discussed who was going to drive. The second time we just went. Sam had been abusive to Jane at home. On the way back he as abusive to me - again accusing me of violence, which he later repeated to staff.

So we dropped him off, Jane chatting with the staff to explain (Sam of course now appearing rational and together!) while I got him some tobacco.

Then we drove home. I spent about four hours driving there and back that day and we still had the meat to get together for our friends.

Nell had been getting on with it and all was ready on their arrival. (Well as ready as it ever is on our guests' arrival!) We had a lovely evening, trying hard not to think about Sam.

I think I wrote a while ago about Jane meeting with the "second opinion doctor". It was by chance we found out he was visiting Sam. Because Sam had expressed distaste for taking his medication - even though he had not recently refused it - it was thought he might be described as not properly consenting. In such cases it is appropriate to get a second opinion.

Though this is of course from another psychiatrist who works on similar wards with similar patients and who regularly prescribes similar medication ...

A genuine second opinion?

Jane waited for hours to meet this one. Most of the time sitting outside in the car park in her car as there was no other facility at the hospital at the weekend.

She saw him arrive but could not speak to him until an hour or so later. It was clear he had not read Sam's notes properly. He did not know that Sam had been taken off Clozaril (clozapine) because of myocarditis - a serious heart complaint - even though we had previously seen it written up on Sam's drug chart.

He said he had been brought in because the consultant wanted to reintroduce Clozaril (clozapine).

The following day I phoned the ward. The consultant wasn't available - he didn't work for the hospital on a Monday (It had been late Sunday afernoon the second opinion consulatant had bee moonlighting to add more to his huge salary.) The ward doctor was on leave all week. So who was the doctor with reponsibility for the ward that day? If a doctor was needed who would they have called?

I eventually spoke to the ward manager who reassured me from his knowledge of ward rounds that there was so such plan. He said he would check the notes and get back to me - which he did with reassuring noises.

We'd made a complaint to the ward about numerous issues. One of these was our inability to speak with the consultant - so by chance soon after this I got an appointment with the consultant. He was very reassuring that of course they were not considering reintroducing Clozaril. It just had to be considered seperately by the second opinion doctor as it was a different class of medication.

So of course I believed him ...

A few weeks ago we heard from Sam's psychologist. He'd been to a ward round (we of course are never invited, despite their published policy) and they had discussed putting Sam back onto clozapine.

We couldn't believe this and were so angry and couldn't decide how to deal with it - especially as we weren't sure whether we were supposed to even know or not.

In the end we got Sam's care co-ordinator to raise it at a recent CPA meeting that we attended.

Sam's been improving as far as they are concerned but they are still desperately looking for a medical solution. It's what they do. Despite the fact that there is little or no evidence for recovery on medication - merely a low level maintenace - whereas many have recovered through getting off medication with different theraputic support.

The consultant said they'd looked into Sam's records and it hadn't said "myorcarditis" on the heart consultant's report following his meeting with Sam. Though he had insisted Sam was taken off clozapne immediately - causing all sorts of psychotic symptoms. So perhaps Sam might be tried on clozapine again...

They really are clutching at straws and are desperate for a medical solution.

This is despite the fat that they have good rehab staff who are trying hard and a psycholgist who believes in Sam and an Assertive Outreach team that believes there is an alternative route to recovery.

But meantime the consultant just wants to try Sam on clozapine one more time in the hope that it won't kill him ...

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I wrote this a little time ago. Since then there have been other issues to do with mediation that I have already reported. It just feels as if a medical - i.e. drugs/medication - response is all that psychiatriests and many other staff are capable of.

Friday evening he was juggling with sharp kitchen knives.

On Saturday he tried to wander off in the morning. In the afternoon he was sitting on the kerb in the street to smoke his cigarette. Jane got him back inside with difficulty. There were children playing football in the street. One seemed to be crying. She heard one say, "It's alright. He's gone now."

Saturday evening he kept coming back downsatairs unable to sleep. His last "supper and cigarette" was about 2.30. Surprisingly for sam he was sprightly and up and about by 10.00 on Sunday morning whilst we were all bleary eyed.

On Sunday he painted, he listened to music, he joined me shopping, he visited his grandparents and chose some things to share with them, he went back happily with his sister in a positive frame of mind.

I hope it was more than a positive blip on Sunday.

When I came to give Sam his medication on Friday evening it had changed again.

Nobody had told me about it when I picked up Sam and his medication.

A little while ago we'd had a ward round. It had been agreed to gradually reduce Sam's neuroleptics.

It turned out that at the next ward round this decision was changed and another decision was made to give Sam all of his neoroleptics at his evening med rather than splitting them between evening and morning. We only discovered this because Sam comes home and someone had to explain it to us for home administration.

It has been changed back again.

Nobody mentioned it.

We can only surmise why - given Sam's sudden change in presentation.

I only noticed it because I looked at the instructions on the box. So I rang to get it confirmed.

What's the point in having a planning meeting if those plans are not adhered to. Given that we were part of that meeting why haven't we been told that the plan has been changed. Why also haven't we been told that the plan has been changed back again. Never mind "why" the plan has changed.

The CPA planning system seems to be just for show. The real plans are made by psychiatrists on their own. CPA is just a showcase.

So do we make a fuss?

What for? Just to get on the wrong side of the psychiatrists yet again who hold all the power.