Monday, June 28, 2004

It's Sam's birthday soon. He will be 25. He was 20 when he first became ill. Doesn't time fly.

Trying to buy him presents is always difficult. He seems interested in so little. We tend to get him clothes but he prefers to wear his oldest and most disreputable garments.

Jane bought him a birthday card this morning. We both shed a tear or two over it. She said it was difficult to choose as most designed for his age were all about going out and having fun. Not very appropriate when you are locked up.

In the end she chose one with a picture of a child standing on a sandy beach on a hot summers day. The child is holding a big toy boat and is looking out to the azure sea with the blue sky in the background with fluffy white clouds. The text on the front says:

a birthday wish

let your dreams sail free
for in all your tomorrows
the sky is blue

sail on

Sometimes it all seems too much again.

Saturday, June 26, 2004

I've just discovered that Careen's "Schizophrenia and Cannabis" site now no longer exists - it has been deleted. If you have particular questions or issues about this do contact me. If I can't help I'll contact Careen. If you want to discuss with others then in the UK perhaps try the Rethink Carers' messageboard - I think I have a link in the side panel. I do hope this might improve but part of the improvement must be people using it and finding a need for it.

Yesterday we went for a meeting on the ward.

It had been set up by Sam's key worker who we get on with well. He had been off for a few weeks and we only got to see him last week for the first time in ages. We mentioned a few concerns about the ward so he immediately decided to set up a meeting. I started to feel anxious about this. I was concerned that the ward would see it as fussy parents coming along to complain and make a fuss. I started to build it up and worry about it. I'd been feeling well all week but on the morning of the meeting started to feel dizzy and wobbly.

We arrived early by arrangement to see Sam for a while first. As we arrived we got a phone call from Sam's key worker to say he would be late. Sam was okay but clearly still not at all well. We had more conversations about everything being nothing but he was in good humour. He had just woken up so took some engaging. The medication is making him very sleepy at the moment.

The meeting went fine. The doctor wasn't there which was actually good as it enabled us to build positive relationships with the ward manager and Sam's key nurse. It's important that they see us positively as being supportive and wanting to work with them. At the moment I'm sure they still see us as a bit of a threat. There is a bigger gap with the doctors and that may be a more difficult bridge to cross but we're working out tactics!

I felt okay after the meeting and we chatted a while with Sam's key worker before leaving. Jane felt good about it which is most important. The pressures of Sam being there have been getting to her. She needs to know she can trust the people who are caring for him.

When we got home I was exhausted but we had arranged to see some old friends who we see rarely for a meal in a nearby town. I'd picked the restaurant and it went fine. We talked about Sam far too much but it was a lovely evening. It perked me up and I was much more lively than if I had just been at home.

Thursday, June 24, 2004

A last Tuscan photograph of poppies in a vineyard

I didn't write any more entries in my Tuscan journal after the last one. On the Friday though we went to Motecatini Terme and Montecatini Alto.

I had thought of not going, leaving it to Jane and Nell. I was tired and fancied a rest and some time to myself and wasn't sure about Montecatini. In the end I felt well in the morning and was persuaded. I was pleased I was. Montecatini is an old spa town and was very interesting with well dressed ladies and posh shops. We had coffee watching them all walk by before window shopping in the designer shops and then taking the funicular railway up to Montecatino Alto.

We had lunch at a restaurant right at the top with amazing views before a quick look round the old town. This was amazing and just made us want to go back for more.

We got back home in time for a swim and then went into Vinci for a drink and some last minute shopping for presents and then went home for a belated dinner and farewell to our new friends. I hope some of them might find some of my photographs of the holiday on my photoblog website.

Wednesday, June 23, 2004

Time to catch up on the Tuscan journal. This looks like a long one. I hope my fingers can cope with the typing:

The farmhouse we are staying in is divided into seven apartments. The owners held a meal for all the guests on Tuesday evening. It was lovely and a good chance to begin to get to know some of the other guests. I was chatting to an American who mentioned that his brother - sitting further down the tab;e - was a record producer. He had recently produced a CD that sampled some of Alan Lomax's early blues collections from the late forties and early fifties. As we started to make our way back very full from too much food and wine I introduced myself and asked about the CD as I have an interest in blues and jazz music.

We soon worked out that our ages were within a year of each other and had each got into some of this music at about the same time. He rushed up to his room and brought me a copy of the CD.

I've played it through three times now and am very impressed by it. I have seen one of the artists on it - Fred McDowell - back in the late nineteen sixties when I was at college. It turned out that Greg - the producer - had also seen him around the same time.

Yesterday we had a hot and tiring day in San Gimignano.

It is a fascinating medieval village but is now so overrun by tourists that it could almost be a theme park. When we last visited about seven years ago we found some quiet squares away from the crowds but this time could not find quite the same spot.

Today we are having another quiet day writing postcards, a little shopping, some walks and maybe a swim in the pool and, of course, writing my journal.

Monday, June 21, 2004

I was saddened to hear that Careen is closing down her site about Scizophrenia and Cannabis.

This is a major issue that received significant coverage in the UK media recently when the laws on posession of cannabis were revised. It is also one that relates to Sam. However it has all gone very quiet recently.

There seem to be few carers using the internet to share experiences in the UK. Maybe they are too busy caring. Some mesages I have seen recently on the Rethink carers messageboard are really worrying. They are from carers who can get no information, advice or support from mental health services because of "confidentiality". This is another major issue I am concerned about. Maybe we need another messageboard about that - or just a good one where all these issues can be discussed openly.

I haven't managed to type in the next installment of the holiday journal yet. That's because I had to type in the last entry twice as my sister-in-law managed to pull the plug out when tripping over the lead from the computer when walking past!!! This lost me half an hours typing!!! - Yes, I know. I should save my work more often. I know this. I just don't do it!!!!

As an interim amusement you might be interested in some of the entries to Google, etc that have found their way to this site recently.

They include:
Bottle Fairy
live in carer job couple
"curly hair" + cortisol
schizophrenia persian site
weblog schizophrenia carer
schizophrenia rehab
درباره total station
acute ward suicide
schizophrenia and yoga
Asian Carer's in the UK

I just wish I could contact some of these visitors.

Sunday, June 20, 2004

On Friday we stopped off to see Sam.

We talked a lot about nothing. I don't mean we didn't talk of anything serious we really did talk about "nothing". For Sam everything was nothing. He was nothing, people were nothing, the world was nothing.

It was an interesting visit in other ways too. Jane had spoken with the doctor on the phone in the morning and had raised issues about us not really knowing what was going on because of poor communications, difficulties in talking with staff and never having anywhere private to do so. She even complained that we never even get offered a cup of tea when we arrive after a long journey to visit. (Jane likes her cup of tea!) I said this was a mistake as all they would remember would be the cup of tea and ignore the rest!

As soon as we arrived on Friday - guess what? Yes, we got offered a cup of tea! We were also asked to speak with Sam's named nurse for only the second time and were taken to a private room. Perhaps sometimes it is worth falling out with the doctor. I did have difficulty though in keeping a straight face!

Another entry from my holiday journal:


I'm a third of the way through my book. We've had a quit day at the farmhouse. Short walks, a swim in the pool and lazing beside it, a special meal with other guests tonight.

I'm sitting outside - I should really be going for my shower to get ready to go out - the birdsong is so varied and beautiful as I look across the green wooded valley in the evening light.

Jane and I talked about us this afternoon. We never have time at home, or the inclination perhaps. It's not easy but it needs to be done. Things have not been right between us for the last couple of years.

All the problems with Sam have cost me my son, my health, my career and some friends. I'm determined it's not going to cost me my marriage as well. But that brings other tasks to work on and yet more stress. But after nearly thirty two years of marriage it is something that needs and is worth working for. We haven't made it a priority recently. Just expected it could carry on as it always has. But all these stresses and strains are bound to have an effect on a relationship. That's in addition to those factors that must affect any couple as their children turn into adults and they look for a new role.

Saturday, June 19, 2004

Another excerpt from my holiday journal:

Yesterday we visited Pistoia. It's a little north of here and lent itself to a short visit to a nearby town. Not being a tourist place and also a sunday afternoon it was nice and quiet but gave us our first feel of an Italian town this holiday. I find Italian towns have a totally different atmosphere from those in other European countries. The scale seems so much smaller. Even Rome can feel like a collection of villages. We stopped on the way back in the smaller town - really a large village - close to where we were staying. We found alovely restaurant and enjoyed a delightful meal.

I'm sure Jane, like me, has thought of Sam but neither of us has mentioned him once. Last week barely a few moments went by before he cropped up in the conversation - or became a major topic.

Today we went to Lucca. It is a lovely town. Jane and Nell have been before and delighted in showing me round. I loved it too. It's like a mini version of Sienna but I think I might have liked Lucca even more.

On the way home we stopped off at a small town we had passed through in the morning. Earlier in the day as we stopped to buy some bread it had seemed a lively, friendly place. We thought we might find somewhere nice there for a meal on the way back. In the evening though the place was dead and the two restaurants we found were closed.

We returned to our home village to the pizza restaurant where we'd had lunch when we first arrived. Our pleasant meal on the terrace was enlivened by what looked like two classes of sixth form girls complete with their teachers. The teachers semed full of themselves, one in particular in a white suit and a fluffy gote beard clearly thought he was the bee's knees. Another bent down to pick up Nell's Italian phrase books from the floor where she was hiding them much to her embarrassment. Jane gave him a beaming smile. So I said I fancied one of the female teachers sitting opposite.

We decided it was time to go"

Neither of us has mentioned Sam again today and although I have been tired I have coped with three busy days.

Tomorrow were planning a more restful day with local strolls and maybe some time by the pool.

Nell and Jane are reading now. I've tried twice to get into my novel. Sometimes I find it hard to concentrate. I think I'll try again now.

Friday, June 18, 2004

Yesterday We met with Sam's care coordinator. He's been off for a while so it was good to see him again. He's a really super guy who always plans to make time with us despite being very busy. We felt quite good at the end of it as if there was a long term plan that the current situation fits in to.

This morning Jane rang the ward as we hope to visit Sam on our way to visit relatives this weekend. The ward manager came on and talked positively about Sam which was really good.

A short while after the doctor from the ward phoned. I think it might be in relation to a problem with Sam a couple of weeks ago where we were unhappy. I think Sam's care coordinator must have passed that on. Anyway Jane was very straight with her and there was a frank exchange of views. It was probably necessary but has left Jane upset. There is a resistance to working in partnership with carers which we are going to have to work on with them.

Thursday, June 17, 2004

The first day in Tuscany I wrote the following on the back of the directions to get to the farmhouse.

I'd been very tired the week before we set off. Jane had not been sleeping well and was getting to the end of her tether. I hoped we would not be too tired and stressed to enjoy the holiday. I wished we were going for two weeks rather than one. I was worried that we would just be getting relaxed and into the holiday when it was time to come home!

We had to be at the airport - fortunately close to home - by five thirty am so were up soon after four. I have difficulty getting up at the best of times but managed okay. I couldn't sleep on the flight until we were just about to land.

When we arrived at the airport all was madness. One of us only was allowed to go on the shuttle bus to where the car hire was situated. People were milling around unsure of where to go. Families were insisting on staying together fearful of whether they would ever see each other again! The driver refused to set off until all the additional family members got off. He ordered Jane off as he couldn't believe that a woman would be the main driver. I was across the way with Nell and the baggage. Jane stayed on. Eventually the bus set off but crashed into another one, removing it's bumper. Nell and I stayed with the bags and eventually Jane returned with a tiny car that came as part of the deal. We squeezed ourselves and our bags into it and baked as we set of for our country retreat - there was no air conditioning in the car.

As we got close we stopped in a small town to buy provisions before the shops closed for the weekend. Then we found a restaurant with a lovely terrace where we had lunch. I ordered a bottle of wine to celebrate our arrival properly. Nell and I ordered pizzas with salad. The pizzas when they arrived were huge. It looked as if one would have done for all three of us but they were wonderfully light and we finished them off.

I don't know if it was the food or the wine or perhaps just the heat or the early start but I suddenly felt totally drained and exhausted. I had said I would drive from there but fortunately Jane was still up to it.

We climbed out of the town, the little car struggling fully laden on the tight, steep hairpin bends. We climbed higher and higher through the beautiful Tuscan wooded countryside with olive groves and poppies until soon we saw the converted farmhouse we were looking for nestled on the hillside. It looked beautiful.

We got our bearings and admired the views. Then we did some unpacking before we each fell asleep. Well I only closed my eyes for a few moments sat on a chair but Jane swears I was snoring the three times she walked through the room.

Later in the afternoon and again in the early evening I walked round the grounds and took a few photographs. Nell and I sat and discussed Sociology of all things. It was lovely sitting with her and chatting, looking up at the beautiful view in the early evening light.

I sat on a bench outside our front door with a bottle of Italian beer and began a draft of this while Jane started a pasta dish which I finished while she showered.

I think it's going to be a lovely holiday.

Wednesday, June 16, 2004

Whilst I was in Tuscany on holiday I kept a handwritten journal.

I don't have a laptop and we were staying in a farmhouse, now converted into apartments, with a lovely swimming pool.

It was situated high on a wooded hillside with stunning views across a wide plane to mountains beyond.

I wrote the journal most days and I'll type it in for you. Rather than doing it all at once - which might take some time - I'll do it in installments (in italics) and try to keep up with ongoing events as well.

I'm drafting this in Tuscany in the evening sunlight looking at the view I have just described. It's stunning.

Tuesday, June 15, 2004

Hey it's really difficult getting back in to this having been away for a week.

The holiday did me good. Both Jane and Nell have commented on how well I was - and still am, though If found a short walk this afternoon a bit hard.

Jane reckons if I can have one week in Tuscany each month I'll be fine. I guess she's right. Any offers for paying for it???????

I kept a handwritten journal while I was away and I will try to copy it into here for you.

On Sunday we visited Sam. He wasn't at all well. It's just so amazing how he can change from being so well to being so poorly in such a short space of time with no apparent reason!

He talked to us of:
- getting into peoples minds to clean them out,
- no longer needing to be in hospital to cure people as he could do that from outside by the power of his mind,
- people in his head arguing,
- needing to laugh all the time,
- having no personality so having to copy other people,
- being able to change tobacco into coke or cannabis,
- his ability to light a cigarette without a lighter or match (a useful ability there as lighters and matches are not allowed - so patients have to seek out a member of staff to get a light or chain smoke.)
- worrying that he could crash a plane by the power of his mind,
- being able to do magic.

All the time though he thinks he is well and has appealed against his detainment again. When he was well he had more insight into his illness. Also, he has not talked to staff about any of this. And when we ask to talk to them about it they appear to only feign interest. As long as he is quiet and they are changing his medication, what does it matter what is going on in his head?????

The manager of Assertive Outreach phoned Jane this morning in response to an earlier call from Jane. I feel she really is trying - as is Sam's care co-ordinator. He has just come back from paternity leave and phoned up straight away even though he has loads of crises. We will be meeting with him on Thursday.

I'll have a go at posting a picture of some Tuscan poppies here. If it works I may post some more pictures of the holiday.

Sunday, June 13, 2004

Well - back from holiday.

Returned yesterday and visited Sam today.

I've lots to tell you but am very tired tonight.

I'll try to write more tomorrow - and maybe even post a photo or two from Tuscany!

Saturday, June 05, 2004

We're going on holiday today.

Whenever we do, something always seems to go wrong.

I can remember ringing daily from an old red English telephone kiosk that seemed so out of place in a park in Avignon to the hospital where Sam was laying with a broken leg.

Another time sitting on a bench in Barcelona ringing the ward to find out if Sam had been found yet having absconded from the ward again. He'd been missing for a couple of days and always put himself in danger.

And the phone call as we arrived at an old abbey to say that he had assaulted someone on the ward was another classic.

I wonder if we will receive any phone calls in Tuscany?

At least where he is now he cannot easily get out. He cannot get access to drugs. He is at least safe.

I hope.

Friday, June 04, 2004

We're going on holiday tomorrow.

When we go on holiday something disastrous always seems to happen. A couple of years ago Sam has a serious accident when we were away. The short version of a long and complicated story is that he stepped out in front of a car, expecting it to stop. At the last moment he leaped out of the way. The car caught his legs breaking both bones in one and damaging his knee on the other.

Sam lay in the bushes at the side of the road putting stinging nettles onto his legs to ease the pain.

They couldn't administer painkillers or start to operate on him as soon as he arrived in hospital until the effects of the half bottle of brandy he had drunk and the cannabis he had smoked had gone from his system.

The effects of the stress of the accident, the opiate painkillers and the other patients on his ward (of the four, three of them had serious mental health problems) made Sam even more poorly. It was soon after this that he was sectioned for the first time.

I mentioned yesterday about the episode of Sam being violent. We were on holiday again. We were staying in Jane's brother's house for a short break whilst they were on holiday. It was a lovely sunny day and we were just arriving at a local beauty spot when Jane's mobile rang.

Sam had hit a visitor to the ward.

He punched him in the face, breaking a tooth. They didn't know yet if he was going to press charges.

The victim was an ex-patient. Sam had been told he was a child molester. Sam had been wound up by some of the patients. Sam claimed he was being wound up by one of the staff to go for him. He hit him.

Sam had never hit anyone before. He is a big lad and can look after himself. But in problems that he had previously described to us, in nightclubs for instance, he had run away. He hates violence and knows it is no way to solve a problem. He is gentle, kind and caring.

But in the atmosphere of violence on this ward he hit someone and broke his tooth.

He was grasped by four members of staff, taken to his room, pinned down on the bed and injected with tranquilisers.

A couple of days later Sam had got out onto the corridor. He wanted to take back a sweatshirt he had borrowed to a woman on the female ward. A nurse asked him to return to the ward. He refused. he wanted to take back the sweatshirt. The nurse asked again. Sam gesticulated with his crutches in what was perceived as a threatening manner. The small female nurse pulled on her alarm. They all carry a personal alarm and on setting it off everyone available decends, whatever the level of threat. Sam was again dragged to his room, pinned down and injected. He had some abrasions and bruising to his wrist where he had been held.

But two days earlier he had hit someone, unprovoked.

Since then Sam's anger has been directed at objects rather than people. But smashing the car windscreen as Jane was driving was quite hairy. And he has pushed and jostled Jane when he was having real problems with her at one stage.

He must feel a sense of injustice about how he was treated, however appropriate or not it was seen by the medical staff. Jane's toughts about his fears of being pinned down and injected because of his refusal to take medication play on her mind.

Thursday, June 03, 2004

On Wednesday Jane phoned Sam with some good news about a friend of his.

Sam was confused and withdrawn.

He said he had refused his medication the day before. He'd had a meeting with the doctor and had an argument with her which he had won but he had agreed to start taking his medication again otherwise they would pin him down and inject him.

This happened to Sam twice during his first spell in hospital. The first time because he had been violent and the second time soon after because he had been perceived as being violent. Sam is a very gentle young man who is never normally violent. I will write about these episodes another day.

Sam seemed upset and Jane was worried that he was thinking back to these earlier episodes.

Sam also said that he had been on increased doses of Olanzapine which surprised us. He had been on 20mg which we have been lead to believe is the maximum dose. Sam said he had been put up to 25mg.

The next day Jane rang the ward. She was fortunate in being able to speak to the ward manager who is very nice and friendly. However Jane felt that she changed her story about the sequence of events relating to Sam's refusal of medication and on the prescribed dosage of his medication.

Sam had his medication reduced to 22.5mg to persuade him to take it. I have checked on the website and this is definitely above the recommended maximum dose. It's clearly not working in any case as he is still very poorly.

I was going to visit yesterday and Jane decided she wanted to come as well. At first Sam was uncommunicative. He lay on a bench in the sun with his eyes closed and only responded in monosyllables. No he wasn't tired. He was meditating.

Jane needed to move out of the sun so sat in the shade and wrote some text messages to friends on her mobile. I stayed. I remained fairly quiet but interspersed the occasional question. Sam began to respond a little more fluently.

Eventually he sat up to roll a cigarette. After going to get a light (patients are not allowed matches) he returned and I suggested we join Jane in the shade. He began to chat a bit more freely. After a while I suggested we went and played basketball.

He enjoyed this - and so did I but I soon tired. As we played we chatted a bit. Sam would stop and tell me about how he really could see into the future, about how when you die your thoughts stay alive - because where would all that energy go?

We were able to laugh and joke about stuff as well.

Sam had come back to life.

I was pleased we had visited.

The staffing ratio at this hospital is really good. Where were they to bring him back to life?

We asked to speak to a member of staff before we left.

Again we were just stood in the busy office. They may be friendly but they really have no idea. Only once when I've asked to speak to a member of staff have I been taken to a private room.

So we didn't raise issues again. Jane had in the morning and we're trying so hard to appear friendly and supportive whilst raising issues as we see them. We don't want to be branded as awkward troublemakers. So I didn't raise the issue of the dosage of medication again. Instead I asked about the possible change to Clozaril. The answer was obvious - that he needs to be compliant about taking his medication first.

All this has really unsettled Jane. I've been very achey and tired this week and Jane hasn't been sleeping at all. This makes her irritable and easily brought to anger and frustration. She is also very busy. She is worried that she can no longer cope.

We go on holiday next week.

I wish we were rested enough to be able to thoroughly enjoy it! We certainly need it.

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