'schizophrenia'

- a carer's journal

I was feeling guilty.

I didn't want to visit Sam today. The thought depressed me.

Last time I saw him he was so poorly he'd hardly been able to hold a conversation. I just wasn't looking forward to seeing him like that again.

I didn't want the hour and a half drive there and the hour and a half back. The traffic, the spray from the lorries on the motorway, the tension in my back.

Sam was a little better. We threw a ball about together, had a few laughs. Sam told me how he was making other people better but how it was hurting him, about his control of the universe, about his special powers.

He also told me he won second prize in the dance contest at the ward disco.

I was pleased to have seen him. As I left we held each other and squeezed.

He's my son.

(UK readers will notice there is good weather today - and no spray on the motorway. I've been writing and saving posts before publication recently so they are about a week or so behind at the moment. This helps me to keep publishing when I'm not able to write. That might help explain some contradictions to those I correspond with. Hope it doesn't cause too much confusion.)

Jane had to travel across the country to talk with her manager about work yesterday. She's been finding concentrating on that difficult. It's just been an additional pressure.

Instead she's been concentrating on voluntary work she has been doing as a carer within the mental health service. She's on lots of different committees within the Health Service's ludicrously complicated organisational structure as well as speaking at local and regional conferences. That all seems to her to be a much more appropriate use of her time. As yet, though, it is mostly unpaid or only nominal payment.

She's been in a bit of a state for the last few days but the meeting with her manager has kind of cleared the air. Future funding is unsure anyway bit she is hoping it can all be put on hold for a couple of months until she can make logical decisions about it all.

This morning she had a dentists appointment and was going on to see Sam.

She woke in a more positive mood than I've seen her in for ages.

Maybe it was getting the meeting at work out of the way or perhaps the conversation with the psychologist. Jane reckons it's simply that she slept for six hours in a stretch last night which is double what she usually manages.

She was able to see Sam and go with him for some heart tests to the hospital. They seem okay. There had been heart problems most probably caused by the Clozapine. So it is good his heart seems back to normal. Now they may be able to make some decisions again about future medication.

Jane was shocked to see how poorly Sam still is. He became aggressive at times because he could hear Jane saying things differently form what she really was saying.

He was still able to give her a cuddle in a loving way before she left.

Nell and I talked yesterday evening.
 
Jane was out and we chatted beside the pile of washing up - ignoring that.
 
We talk so little about Sam usually.
 
I'm still getting used to Nell being 'grown up'. She is an adult now and is trying to support me and Jane.
 
It's good to be able to allow that.  I still so feel as a father it's my job to support her.
 
Letting her help me is good.
 
I'm sure that helps her also.

I phoned the hospital this morning to try to find out if there had been any decisions on a change in Sam's medication.
 
Could someone phone me back?
 
- Okay, so I stayed in all morning.
 
Nobody phoned.
 
Eventually the phone rang and it was Jane. They hadn't been able to phone me for some reason and got her on her mobile. She was at the other end of the country on business. First she had to leave a meeting and then the consultant phoned when she was at lunch. She was talking to him sat outside a restaurant on a busy main road.
 
He was very helpful and went through lots about Sam's condition with her. Although he was a little patronising she felt he had been open and was trying to be helpful and communicative.
 
Because there have been some problems with Sam's heart probably caused by the Clozapine they are wanting to wait a little before making a final decision on new medication. Jane did mention the Abilify and he did say it was a possibility - so watch this space! 

We went to see Sam's consultant from the Assertive Outreach team today. 
 
It was at his suggestion when we had rung in to discuss the possibility of a new medication - Abilify - that we have recently heard about.
 
It seems to work in a slightly different way from the other medications and there are high hopes for it.
 
As Sam has had to come off the Clozapine and they have yet to decide on a new course of treatment we thought it would be a good time to consider it.
 
However we don't yet have a relationship with the consultant at Sam's hospital and are worried that suggesting it could be counter productive.
 
We wondered if consultant spoke to consultant that might work better.
 
Anyway, the Assertive Outreach consultant was very nice but did explain reasons why a newer medication might not be best for Sam.
 
It left us feeling rather down and depressed. It just seemed so pessimistic.
 
I think we had been holding out so many hopes for the Clozaryl (Clozapine).
 
It is difficult sometime to hold on to that hope and to know when one might have to let go of it ...

A recent post on the Rethink messageboard was about a patient who had gone missing from the ward although being detained. She had run off collected her children and still has not been found. Her sister is distraught.

Sam has escaped from acute wards when supposedly detained under a section loads of times.

It is worrying because he often puts himself in danger.

I think I have written about his first escape before. At the time he had a broken leg in plaster and was walking on two crutches. He threw his crutches over a fence jumped from a wall to grasp the top of the fence and pulled himself over. (A double dymo, I think - he's a rock climber)

In bare feet and with one crutch (the other broke) but no money he got the bus to the bus station and phoned home. The hospital refused to believe he was missing when we rang. I managed with difficulty to take him back.

In a way though I was kind of proud of him.

They kept raising the fence but he kept getting out. The last time he climbed to the top of the fence and just sat on it. The hospital manager wrote him a letter saying okay - you win, but please don't climb out any more.

The fence didn't really matter. All you had to do was to wait until all the staff were in a meeting - which isn't hard because they spend more time talking to each other than they do talking to patients - and walk out.

I can't remember how many times he got out.

One time he set off walking down the motorway to go to London. He thought it was safer than walking through housing estates where he would get beaten up. He has walked alongside a railway line and tried to jump on a train. Another time he spent a few nights in a nearby town first sleeping with a vagrant on the street who had a major drugs habit then staying with some students. Eventually they must have realised he was poorly rather than stoned and called the police.

Always he gets brought back by the police. I wonder if he sometimes deliberately behaves bizarrely to get arrested so he can get a lift back to the hospital. The police are usually very kind but I'm sure he doesn't need the thin, tight plastic straps cutting into his wrists to detain him.

I visited Sam today.
 
He is so poorly.
 
He's been talking with Jack the Ripper. He's sure he can help him.
 
He's been travelling in space and time. He can go through black holes.
 
He controls the universe.
 
He thinks he's well.
 
He can't hold a conversation where one sentence follows on from the previous.
 
It was so sad to see him like this. Only a couple of months ago he was really well. To all intents and purposes as well as me or you.
 
A correspondent wrote to me recently (I will get back to you - I promise) and wrote in relation to her own circumstances:
" what a difference a joke and smile between us makes to my
spirits...and hopefully to his..."
 
Sam and I managed a joke and a smile. When he is slightly better I can even sometimes joke with him about his beliefs and he will accept it from me. It's good to be able to continue to joke and smile.
 
Though - I still came away very sad today.
 

Jane's been a little tearful the last couple of days.
 
Maybe it's since seeing Sam so poorly again.
 
As a mother she just wants to help him, to make him better.
 
I may have worked at recognising that the son I once had I may have lost. That's not to say I don't still love the Sam we have now and want to help him all I can. But I've been able to let go, to stand back. Indeed I need to be able to. I can't cope with inimate day to day involvement any more. Certainly not where it causes tension and stress.
 
Jane however needs to feel she is doing something, to be involved. When she can't she feels so powerless. Once she feels powerless she begins to depair.
 
I'm trying to support her.
 
I really am.

Jane went to see Sam today with her brother who is a psychiatric nurse.

Sam was still very confused.

They didn't take the opportunity to talk with his named nurse when they arrived - and then of course later she was too busy.

The nurse they spoke with had only been on the ward a few weeks. We're still confused about the "amber" warning for the Clozaryl - as to whether this was from the blood test or because of his pulse rate. Nobody seems able to expain.

Because of an accident on the motorway it took them three and a half hours to get home.

I've posted once or twice on some messageboards about schizophrenia issues recently.

I received a message from a reader of this journal saying how much she enjoyed reading it.

She said I was an inspiration.

Thank you.

You cannot imagine how much that means to me.

Sam phoned again today from the payphone and I called him back.

He had been to art therapy this morning which was good. However conversation was difficult as he couldn't keep up his side for more than two exchanges - at the most.

He has decided not to become a teacher as his dad was a teacher. He is going to be Prime Minister. That was one of the reasons he was practicing sleep deprivation for three nights as when he was Prime Minister zooming around on jets he wouldn't be able to sleep much. He had slept last night though - but he'd had lots of dreams. He had healing properties now. We talked of aliens, when he saw Jesus and m all the usual things one discusses with someone going through a psychotic episode.

Later I got a phone call from Sam's care coordinator with the Assertive Outreach Team. Jane had left a message yesterday and then had a chat with the team manager. We were just bringing them up to date with the current situation.

Of course, the hospital hasn't informed them.

We also wanted to mention a new medication we have just heard of. It is called Abilify. It seems to work in a different way to the usual anti-psychotics. (Just type it into Google and you'll find some links.)

As Sam is changing his medication now anyway it seemed a possibility. However we as yet have know relationship with Sam's consultant at the hospital to be able to have this kind of conversation. He might even refuse to prescribe it if it would make it look as if he was taking guidance from parents. They have to be seen to be in charge and making the decisions.

Anyway Sam's care coordinator said it had been discussed with the Assertive Outreach consultant. Although we have only met him a few times he is very approachable and is nationally known for some of his work. He has suggested we meet in a few days time so that we can discuss this. If he was to raise it with the hospital consultant there is more chance of notice being taken of his views than ours.

Sam remains poorly.

He's following people round, looking for their spirits. He is only allowed out into the outside compound with a member of staff. Despite the twenty foot close mesh fence they worry he might climb out as he has been trying. He's been running and racing about desperate to use up his energy. He is being observed every fifteen minutes to ensure his safety.

Having been taken off his anti-psychotic medication all his symptoms are coming back so strongly.

He has some physical symptoms and they are cautious and trying to ensure that he is not at physical risk through the Clozaryl.

It is going to be a difficult few weeks.

We don't know yet what medication he is going to be prescribed.

We heard only yesterday of a new medication called, I think, Abilify. This seems to work in a different way from many of the other modern drugs. Given that he is going to have to change his medication anyway - why not this new one? How does one introduce this idea to the consultant? I've never met him. Jane has met him once - and didn't get on. We worry that a recommendation from us would mean it was not considered!

Jane managed to get through to our local Assertive Outreach team today. Of course, they have heard nothing from the hospital about Sam's current crises. They were interested in the idea of Abilify (?) and will raise it with the team consultant.

Maybe if consultant speaks to consultant something might happen?!

Sam rang this morning. He said he hadn't slept for the last two nights, that he wasn't eating, that he was just smoking. He sounded hyper, agitated and generally unwell. His thoughts were disturbed. He was sure I was going to have a heart attack. He had written me a letter but didn't need to post it as in writing it his thoughts would have been transferred to me.

Jane phoned the ward to let them know we were concerned about him but they were matter of fact.

There was a ward round this afternoon to discuss changes in medication now that Sam has come off Clozaryl.

We phoned later.

Sam has been in a frenzy today. Despite the twenty foot fence he is no longer allowed in the outside area as he has been attempting to climb out. He was following another patient around trying to capture his spirit. He thinks he can change what is on the television by the power of his thoughts.

They are monitoring him at fifteen minute intervals.

At least they are trying to ensure his safety which has to be the start.

They eventually have prescribed some medication on a temporary basis before they decide what to do next.

They never want to listen but always have to see it for themselves.

Sam is as poorly now as when we first brought him home from university. Then we had to look after him ourselves.

In my counselling sessions I think I began to address my grief about the loss of the Sam we knew and my hopes and dreams for him. I also had to look in a similar way at the loss of my career, my colleagues and the high esteem in which I was held.

Jane hasn't yet accepted or dealt with the loss of the old Sam and been able to accept the new. She is still fighting the whole system as a mother desperate to get her child back. To ensure he gets the best possible treatment. She will fight anyone or anything that gets in the way.

This provides a great tension. I'm trying to let go and Jane is trying to hang on.

That is what caused the tears a few days ago.

The above is a simplistic description but I think holds the essense. But holding on is making Jane poorly again.

Helping her hold on is making me poorly again.

Meanwhile poor Sam is just poorly and locked up. At least we have our freedom.

Today has been a bit worrying.

We'd been trying to persuade the hospital to allow Sam some leave with us - just to be able to walk round the grounds rather than being inside a caged outdoor area. Jane jokingly calls it Guantanamo Bay. I just hope they don't hear her!

We understood that the ward manager was going to raise it with the consultant and she seemed quite positive that it would be okay. I got a phone call on Friday to say that the consultant had agreed it but hadn't filled in the paperwork so it still wouldn't happen as he wasn't due back on the ward. She agreed to try another doctor but thought it would probabaly have to be the consultant.

She phoned again later to say she'd tried - but the other doctor couldn't do it.

At least she had tried.

We'd had a phone call the previous day to say that Sam had a high pulse rate - nothing to worry about, but he was being taken to see a doctor that evening.

When we arrived today we were asked if we would like to see the nurse. This is a rare event.

It seems that Sam had a blood test that was borderline for his continuing use of Clozapine. This is a dangerous medication and is monitored very strictly. It can effect the white blood cells and be fatal. The manufacturers will not supply it without a clear blood test.

So Sam was taken off the medication.

Other tests had shown the high pulse rate.

The doctor at the hospital confirmed that Sam should be taken off the Clozaryl.

This is a big disappointment.

This is the "wonder drug" for schizophrenia. It is supposed to be so much more effective that all the others including the newer atypical ones. We had been pinning our hopes on it. The consultant will review his medication on Monday. In the meantime he is only on a small dose of his previous antipsychotic medication and deprocate - a mood stabiliser.

Because he has been off Clazapine for a few days now he is becoming even more psychotic.

On his visit to the hospital to see the doctor about his high pulse rate he tried to abscond. The male nurse soon caught him - and he came quietly! But that incident together with his medication being confused at the moment means that he will be allowed no accompanied leave - not even a walk round the grounds with staff. Back to "Guantanamo Bay"!

Despite all this he was in good humour. He seemed happy and contented. It was nice to see him and chat. He spoke to Nell on the phone and was really positive.

The time passed all to quickly.

We'll phone the ward in a few days after the ward round to find out what they have decided about the medication now.

Jane would like to attend a meeting about it.

I think I wrote some weeks ago about an article in the Observer - a respected UK Sunday newspaper - by Oliver James. He is a psychologist who writes popular books. The article was about schizophrenia and parents. He argued that as not all schizophrenia was genetic then bad parenting must be the cause.

I and many others wrote to him at the time upset at the way he had framed his article which was hurtful to parents such as myself.

Today he has published another article. It mentions the flood of mail he received about the first article and then goes on to make the same arguments again - and no more logically.

I'm just angry about it. Jane is steaming!!!!

I can't find the article on the internet. I'll try again later and publish the link. If you read it and are not happy with James' views and arguments then please write to him and tell him.

Thanks.

Jane was tearful and emotional today.

She didn't know why.

She's been busy with work and with her work on various committees to do with mental health. In the end it all just becomes too much.

Sometimes when I'm upset or worried or anxious I don't know what I'm worrying about - so I look for something to worry about and then it gets even worse.

That was how it was for Jane this morning.

A cuddle only helped a little bit so I tried a glass of sherry instead. That seemed to work better!!!

I've been a bit pensive this week.

Not sure why.

Yesterday I just snapped at Jane over something to do with our approach to the ward. It wasn't what Jane said but that I couldn't soak up her frustrations and emotional approach to the situation.

I ended in tears and we cuddled.

I still feel a little delicate this morning.

I thought I was doing a lot better but there is clearly so much emotion there that I can't get out and haven't "dealt with" - whatever that may mean.

I haven't had any counselling sessions for over a year. Maybe some more would help. Though I must have had over thirty with two different counsellors. So maybe I need something different.

I'm sorry I haven't posted for a while.

I haven't forgotten you.

Promise.

I'll write again as soon as I get my brain into gear.

We went see Sam yesterday for his birthday.

We'd hoped to be able to take him out for lunch. We had our own reservations, which we kept to ourselves. The ward staff seemed supportive. However the consultant wasn't prepared to sanction leave. "Too soon."

We took presents and good wishes from friends. The presents had to be examined by staff to ensure we weren't bringing in contraband or unacceptable items - this includes batteries, plastic bags, cigarette lighters, matches, aerosol deodorants, anything in a glass container, etc. Maybe lots more things that nobody has told us about yet. So we didn't wrap presents but took them in open gift bags. The ward manager was there and waved them all through.

They let us use the nice meeting room. Sam opened presents and cards and seemed quite well. He seemed to like the presents and to enjoy receiving them. Soon after he opened a card from an old friend who he had known since early childhood his face seemed to crumple and he started to cry.

Jane asked what was distressing him. "I think it's because I can't find the real Sam."

He has spoken of everything being nothingness, of loosing is identity and ego. The recollection of childhood memories seemed to remind him of himself. Of that person he used to be before he became poorly - and of the loss in no longer being able to find that self.

He described trying to find himself but all he could find was:
"thoughts and feelings and love and hate."

He recognised that he was sometimes having delusions - "but I really can sometimes see into the future." So he still doesn't recognise all delusions.

It was great on his birthday to see signs of him getting better again.

We managed to have a few minutes walking round the grounds - accompanied by a member of staff - outside the cage.

"Freedom," said Sam as we walked out of the main door.

We strolled for a bit, chatted some more and then said our goodbyes.

It might not seem much but seeing Sam having some insight into his own condition was a great birthday present for us.

Happy Birthday Sam

I'm sure you would rather be where you are in the photo, climbing than where you are now!