'schizophrenia'

- a carer's journal

Nell and Jane visited Sam yesterday. Sam's often horrible with Nell. I think he finds it difficult to see her doing things and having a life whilst he is locked up so can get bitter and angry and take it out on her. But before Christmas he'd been fine so we hoped it would work out okay.

However he went into one of his difficult moods and was rude to both Nell and Jane so they left after a while.

Today I dropped Nell at her cousin's flat - she's staying with Nell over the New Year and was going to give her a lift home. I've just had a call from them. They're only a little bit lost!

After I dropped Nell I went on to see Sam. He started in a better mood but became more introspective and down as time went on. He couldn't see any point in being "normal" or getting in touch with reality. He'd sooner run up and down the ward being mad. This all came from him. At least though he could recognise the difference between him being well and psychotic. There was something of what they like to call "insight".

I decided he'd probably had enough and made to leave. A member of staff asked me if I'd help get Sam to make some comments for the ward meeting tomorrow. It's an opportunity for patients to raise issues with the ward manager. The new manager is clearly keen for staff to get something written down before the meeting to help structure it better and make it more purposeful. I tried to ask Sam what he would like to raise about the ward but all he could talk about was his predicament in being locked up - it would be all right if he was alone on the moors ...

Then his answers became even more removed from my questions. I tried once more to bring him back to the question and help him raise things important to him.

"You're shouting at me now."

"No Sam - I'm just trying to help."

I went back to the nurse and explained Sam wasn't in the right frame of mind now - no problems, he'd try again later. At least he'd thought I might be able to help. Isn't that part of us working with them as a team?

Another nurse took me from the ward - there are seven locked doors to get through on the way out. I first tried to say goodbye to Sam again.

"You're calling me a bastard. Why are you swearing at me?"

Sam's state of mind can change so quickly. Perhaps I'd already stayed too long - I'd been there well over an hour by now.

"See you soon Sam."

We had a relative staying with us at Christmas. She has had a argument with her family. They are not speaking. So she came to us. She did not see her immediate family or have any contact with them.

A reader of this blog lost her father earlier this year. This was her first Christmas without him.

Both these things helped me put in perspective Sam not being able to come home this Christmas. We met him on the ward with family. We shared presents. We were together for a short time.

We had a quiet day today. A morning of resting and calm pursuits.

In the afternoon we rang to arrange to visit Sam. We didn't even ask about the possibility of him coming home. After the day before there seemed little point. They of course didn't mention it.

To start with Sam seemed much less well than yesterday. He appeared troubled, quiet, sad.

Then he started to talk at us - to give us a lecture. He found some paper and a crayon and started to preach at us in a very articulate fashion. Much of it made little sense but a lot of it was very aticulate and explanatory. It was about compassion, wisdom and peace. About the way it fitted into his mind and that of others. About the lack of guilt or shame for misdemeanors. About how he had broken his leg to make Jane better when she had been ill. Any attempt at contradiction was met with anger that we didn't accept his word for these truths.

The room was oppressive and I could hardly keep awake. I was drained from the events of the last two days and found it all difficult to cope with.

Jane got more involved and found some of our time with Sam positive and felt at times Sam was better than yesterday.

Perhaps it is me that is going mad.

So how did Christmas day go?

Well there has been some joy and happiness but there has been sadness and even despair. There has been anger and frustration.

I rang the ward at about ten o'clock to discuss the details of Sam's leave for the day and to confirm them.

It seems though that Sam had been very lively on the ward last night. He had been running up and down the corridors. In the end they had given him emergency medication and he had not gone to sleep until four o'clock in the morning. So they could not decide whether he was fit to have his leave until he awoke and they did not want to wake him yet. Perhaps they would wake him for lunch and then decide by one o'clock.

The staff member I had spoken to didn't even seem to know that Sam was expected home on leave. She'd had to ask to call me back. It turned out she was the nurse in charge.

An hour or so later Jane phoned and asked to speak to the nurse who was designated to come home with Sam. he knew Sam and we hoped might have a more positive attitude. It was all very difficult he said. Out of his hands. There was always tomorrow ...

He seemed to be implying that management had made the decision based on the previous evenings antics. But Sam is always more difficult on an evening.

I persuaded Jane to come out with me for a short walk in amongst our sobbing. So we could talk alone about what next and get some fresh air and a little exercise. We walked round the block. I'm not sure we felt much better on our return.

We were finishing getting dinner ready when the phone rang. It was Sam. He sounded really well. He couldn't understand why he wasn't coming home. Jane phoned and spoke to the nurse in charge again. She wouldn't budge. She made it clear that because of Sam's behaviour the night before they needed 24 hours before they could assess his fitness to come out. She was concerned about something going wrong when she was responsible.

I was so cross. I rang her back straight away. The decisions had been made at ward round during the week. She was countermanding them. Sam seemed definitely well enough to come home given all the planning that had gone into ensuring it could happen safely while he was unwell. But she was saying no - when she was clearly not aware of all that planning. She said was I aware that Sam had jumped into a lake the previous weekend. I replied yes - I had been there - and that it was after that event that the doctor and the ward staff had agreed Christmas leave. So I made my points very strongly. She said she would discuss the matter with senior staff on the ward and get back to me in five minutes.

Ten or fifteen minutes later during Christmas dinner I got a call. Not from her but from another staff member on call. I'd assumed she had meant she was going to talk to senior staff on the ward - but she had meant a senior staff member on call. I got the same guff I'd had before so I made my points strongly again - I'd again got the bit from her about Sam jumping into the lake - it was a pond for heaven's sake, a big puddle - and leave had been discussed and agreed with the doctor and ward representatives.

So she listened to my points and said she would phone the ward and then get back to me.

I spent another ten or fifteen minutes moving the cold turkey and vegetables about on my plate that I had no appetite to eat. We'd spent such time and energy trying to make that a nice meal. Now though, if it had been fish fingers then it would have had as much allure.

She phoned back. No Sam couldn't come home. In the end the clincher was that the member of staff designated to bring Sam home did not feel that he could guarantee Sam's safety. That was it. If it was just management covering their backs then I had an argument - but if a nurse who knew Sam well and had seen him that morning and had come out with him before, wasn't prepared to come out with him today because he was worried - despite all the conditions that had been put in place - then Sam clearly couldn't come home.

So I backed down. Please pass on to staff that I accepted their decision. We would contact them soon about visiting Sam on the ward.

So that was it. I'd tried my best. But he wasn't coming home for Christmas despite the fact we had agreed that last week and agreed to stringent conditions.

I finished my cold meal. Jane left hers on her plate. We went for a short walk enjoying the setting sun and the laughter and ebullience of our young nephew.

Then we went to visit Sam, with two aunts and an uncle and lots of presents.

Sam was just so well. We couldn't believe it. There were no recriminations about him not coming home. He enjoyed unwrapping the presents and seemed to genuinely find them nice. He chatted in a friendly way that was pretty rational for most of the time. It was the best we have seen him in weeks. But he had not been allowed home.

The nurse in charge was friendly despite our difficult conversations.

The nurse designated to take Sam home today walked past us with head down looking very sheepish.

I'd wrapped him a present as we'd hoped he would be with us today. It is still under the tree.

Sam was quite well when I visited on Saturday - well he was confused and talking of evil and strange things but he was calm and almost rational in a totally irrational way if that can make any sense.

Before Jane visited yesterday she had spoken with a member of staff about taking Sam some smarter clothes to wear when he came home on Christmas day. The nurse suggested it might be better to take them in on the day. It seems that Sam has been taking his clothes in to the shower to wash and then packing them wet in his bag. He thinks he is coming home to stay on Christmas Day.

Jane took him a Christmas Card. He looked crestfallen. He thought it meant he wasn't coming home for Christmas. He was soon reassured. Nell was there as well and he was nice with her. They got him to write some tags for Christmas presents and it seemed to go well.

But there had again been hints to both of us that he had other plans at Christmas - for suicide or escape or both. So we will have to be so very careful.

I know there are many readers of this blog who have their own challenges. I hope tomorrow you all have a peaceful and joyful Christmas.

Happy Christmas.

I had a phone call an hour before the ward round was due to start. Could we get there a little earlier? Jane was still out and it takes at least half an hour to get there. I said we'd see what we could do.

On arrival and departure we had to disinfect our hands as they had diarrhoea and vomiting on the ward. At least they were taking proper precautions.

Sam seems cheerful - but too cheerful again.

Soon we were ushered through into the meeting.

The psychiatrist asked about "the incident". The whole of last weekend seemed like an "incident". But it was Sam jumping in to the pond that they meant. If they'd been there they would have realised it wasn't dangerous - just stupid. His talk of suicide and his depression were much more serious. But "incidents" have consequences.

So will he have leave at Christmas?

In the past we have been cynical about the ease with which Sam has been given leave at Christmas - assuming that they wanted as few patients on the ward as possible during the holiday season.

But to be fair there has been no problem with them arranging a nurse to come home with Sam for a few hours on Christmas day - which has pleased and surprised me.

There are conditions though. Three of us with him in the car. Sam to remain indoors all the time with the doors and windows locked. Not even allowed out for a cigarette.

I think that Sam will find that hard but we will need to go along with it. I had hoped that if he began to find it difficult we might take him out for a walk or back to our house from my parents where we planned to start. But that is clearly out.

Anyway - we just have to make it work now!

The ward manager rang today. I was Christmas shopping. I was in a music store. I could hardly hear her because of the sound and started to move outside until I realised I had two potential purchases in my hand. Getting arrested for shoplifting would not have been helpful.

She had talked with the psychiatrist. She had discussed with him the possibility of Sam coming home on Christmas Day. He had agreed to us attending the ward round and would discuss it with us then.

So it is still a possibility.

I think we are determined to make it happen now and to make it work.

We've both been a bit depressed today. Where do we go from here? Surely now they won't let Sam out for Christmas. Can we feel he will be safe anyway?

We had a group meeting planned for today with ourselves, Sam's psychologist and care coordinator - and of course Sam. It had been decided last week Sam wasn't well enough so we asked if Jane and I could meet with them today anyway. We just needed someone to talk to. We can talk to ourselves until the cows come home. The care coordinator rang this morning and was happy with the arrangement.

Then the ward manager rang. She'd read the notes about "the incident". I guessed she meant Sam jumping in to the pond - though it has grown to a "lake" now! But in many ways the whole weekend was "an incident". She was kind and reassuring though and genuinely seemed to want to work with us. We are invited to the ward round on Wednesday and she certainly hasn't ruled out further leave for Sam though clearly it will need to be looked at again.

The meeting was supportive but ... Well what could they say. They had no more idea than us. They seemed a bit down and flat as well. Perhaps it is the time of year and they are just tired. So we talked and they listened and tried to be supportive. It was agreed though that we would continue with the group sessions in the New Year however well Sam is.

We talked of alternative placements for Sam but none of us were full of enthusiasm.

There is potential though for a staff member to accompany Sam home on Christmas day - so it might happen yet.

We took Sam out again today with the same member of staff. Sam seemed very cheerful - far too cheerful.

His mood changed though in the car as we drove to a local country park. As we walked he talked incessantly of suicide. He told me he had died twice already and come back to life. After a third time then everything would be alright.

We were heading off back and passed a small pond. Sam stood at the side then jumped into the icy water.

Fortunately it was only a foot deep.

We got him out and hurried back to the car.

We had hoped to take Sam out today. It had been agreed - it was assumed the nurse designated would be back from sick leave today. He wasn't. Also Sam's recent behaviour didn't give them confidence to allow the leave. Jane insisted. They agreed to allow an hour's leave for a walk near the hospital.

When we got there Sam was very high. He seemed to have some control though. We tried to calm him as the staff nurse got ready to accompany us.

As we walked down the street in the cold air Sam was talking of suicide and jumping in front of a car. The nurse stood on one side of him and I on the other ready to try to grab him.

"Are you two still okay about this," asked the nurse? His usually cheerful and relaxed face now looked tense and worried. He was ready to go straight back to the ward though I doubt Sam would have been.

"Yes, it's fine," we assured him, feeling worried ourselves.

Soon we got to the playing field and walked across the football pitch towards the woods beyond. Once away from the road it seemed safer. We were into the woods and talking with Sam in a relaxed manner. It took a while but as the time went on Sam relaxed and was able to hold a conversation. At the start of the walk he hadn't been able to answer simple questions.

Towards the end of the walk he was questioning again why he was locked up, whether he would be locked up forever, why he had to go back, whether it meant he was mad, whether he would be better off dead.

I told him how much he had improved on the walk in front of the nurse to make sure he had noticed too and would feed it back. We promised Sam we would visit and take him out tomorrow - hoping the ward would be able to facilitate it again.

And yes - how much we wanted him home at Christmas.

He rang a minute ago. Confused.

"It's like Chinese algebra in here," he said.

He's trying to communicate and hold it together but it must be so hard when your mind is playing so many tricks and you live on a corridor full of other people struggling in similar ways ...

We had planned to take Sam out on leave yesterday - but with a member of staff. We had a call the day before though to say the member of staff concerned was ill so it would not be possible.

Instead Jane and I had a drive out in the beautiful frosty sunshine. We had lunch in a pretty village and even managed to buy some Christmas presents.

Later in the evening Sam phoned I think five times. He kept talking of Christmas. It has always been a special happy family time for us. We will have lots of family together this Christmas. Sam is keen to be part of it.

This morning we found that he had been angry later in the evening and had thrown across the room and smashed the TV remote control. He had been given Lorazipam to calm him and had slept well.

Today his care co-ordinator from the Assertive Outreach Team went to visit Sam. Sam behaved it seems very much as he had with me last Saturday - angry and violent. The care co-ordinator felt frightened and phoned us afterwards.

For this coming Monday we had planned to start some planned group work with Sam, his psychologist and his care co-ordinator and with ourselves. It seems it might not start now.

Will Sam come home for Christmas? Can it be arranged safely?

I usually like this Christmas so very much but this year it is just in the way of sensible plans to get Sam out of his downward spiral. It frightens me and, for the first time I remember, I wish Christmas gone.

Last Wednesday we went to ward round. It was to discuss what iplications Sam's recent actions would have for his leve.

In the end it was agreed that leave with us could continue as long as a member of staff was available to accompany us. When I rang today it had been decided that it would be a male member od staff under the circumstances. Though if Sam decided to be violent or run off I doubt it would matter much who it was.

Sam was invited into the meeting. The psychiatrist asked him what we could all do to help.

Sam said, "Right, there are five things ..."

He counted them off on his fingers.

"Compassion, wisdom, love, understanding and peace."

There's no answer to that.

When I saw Sam today he was so angry.

To start with I tried to structure our conversation. We were in a small bare room. It was in the course of being decorated with cheap Christmas tat. Sam hated it.

Eventually though Sam took back control. He was angry. So very angry. He kept talking of violence.

He is normally the most calm and gentle of people but on a low secure male ward he can see and feel and experience the violence around him all the time. At last his own anger at being detained is coming out in that way. It is what he has learned there.

At the ward round earlier in the week a kind, thoughtful and supportive nurse suggested that this was a positive thing - that Sam was trying to take control.

As he threw a plastic bottle across the room, without warning, completely shattering the top, it didn't seem positive.

It didn't seem positive as he talked of killing his grandfather - hanging him in front of his aunt to wipe the smile off her face. It didn't seem positive as he described beating up whoever it was who had put him there. It didn't seem positive as he showed me a drawing he had done of a "bouncer" overlaid with a page wide symmetrical red ink blot across the face symbolising the blood there when Sam responds to their aggression.

It doesn't seem positive given that on two of Sam's last three leave visits he has assaulted either myself or Jane.

So I go home with my anxiety still gnawing away at my insides, my depression growing, the feeling that I will never escape from my ME symptoms.

What haven't we done? What haven't we tried?

If he stays there the notion of violence will grow. If he is moved - then to where? This ward is good of its kind. It probably isn't the ward but just Tom's despair.

I cannot to show mine.

But in the end I have to with Jane and she finds that hard.

We have just one little thing holding us away from a pit of despair.

Hope.

It is such a little thing.

But so precious.

On Friday we'd had a really useful meeting at Assertive Outreach. It was with Sam's care co-ordinator and with his clinical psychologist. We discussed ways forward and possible adaptation of family therapy models as a way forward. As the psychologist said with a wry smile, "We've tried everything else!"

But we felt listened to and as if we were all trying to work openly with mutual respect in the same direction.

It seems as if it will still go ahead despite recent events. I hope so. I hope Sam will cope with it. I hope he will find it helpful. I hope we will all find it helpful.

I hope ....

We'd had a good day on Saturday.

We arranged for one of Sam's nurses to come out with us for his leave. We had lunch together at our house and then went for a walk where Sam was able to show her where he used to go climbing. He even tried a few bouldering problems and did much better than I remembered recently.

When we took him back we all commented on how well it went. Sam had come out of himself as the day went on and was really well.

On Sunday Sam was less well but all in all it had gone okay. The weather was poor and we went to a friends house to help her sort out a computer problem. Sam was really sociable and enjoyed playing on the piano. After that we took a short walk in a country park despite the rain just before we were due to take Sam back. He became argumentative in a strange way - talking again about when Jane had been ill with cancer and then about how she would be looked after when I die. Then he hugged her twice in an aggressive way asking if it was a hug. Shortly after, he got her head in his arm and twisted it, wrestling her to the ground. This was on a driveway as a couple of cars came towards us. Sam jumped over a fence and ran across a field. None of the cars stopped to help.

After I had checked that Jane was all right I chased after him - well chased as well as I can in my current state of health! Though at such times reserves of energy seem to appear - sadly now totally depleted!!!!

There are lots of winding intersecting paths in the woods but I managed to keep track of him for a while but eventually at a junction totally lost him.

I went back to find Jane and check she was okay. Then we drove to the other end of the park and Jane dropped me there to walk back looking for him - still in the pouring rain - while she drove around. Half an hour or so later we met back at the car park after I'd checked all over. No Sam. It was now getting dark.

This time our main emotion didn't seem to be that worry and fear of what might become him but more anger and upset about the whole thing.

Soon after we arrived home as we were taking turns to soak in the bath a phone call came from the police. He had been picked up in a local village and was safe and being taken back to hospital.

I am though totally emotionally drained. Just wrung out.

But the ward don't seem interested. The only call we had from them was to check on what clothes he was wearing when they rang to inform the police. So we haven't told them yet about Sam's violence to Jane. They haven't asked what happened. Are we supposed to chase them all the time? When Jane spoke to the staff nurse on the ward on Sunday he had no interest at all and was not even bothered whether we popped in to talk about it. And he, believe it or not, is one of the better staff.

Jane will phone in the morning as presumably there will be a ward round to discuss future leave arrangements. Don't they think we might be interested in that or have something to contribute?

The last few hours have been a bit of an emotional rollercoaster again. I'm still in quite a state but trying to calm and relax now Sam is safe.

The police just called to say Sam had been picked up and that he was safe and well. They had few more details.

We'd had a short walk this afternoon shortly before it was time for him to return to the ward. He'd been quite good this afternoon and very good yesterday. I'll write more of that another time.

But he suddenly started being argumentative and confrontational in an irrational way about things in the past or the future. He started to hug Jane in a way that was almost aggressive. Then shortly after he grabbed Jane around the head and started to twist it. Jane fell to the ground hurt then Sam jumped over a fence and ran across a field. After chasing him for some time he disappeared at a turning in the woods. We searched for almost a couple of hours before it got dark.

... he just phoned while I've been writing. He wanted to talk with Jane. He seemed really high. We discussed what he had done to Jane. He refused to apologise. Once he knew that he hadn't seriously harmed her he was belligerent and saying he knew about marshal arts through Bruce Lee so he couldn't have hurt her. Perhaps he was really phoning to check that Jane wasn't hurt. I refused to let him talk to her in that state unless it was to apologise. He has never apologised for any of the things he has done that have caused us huge distress.

I sometimes wonder if he is trying to punish us as he sees us as being responsible for his incarceration.