'schizophrenia'

- a carer's journal

So nice to see Sam and Nell walking out of the house this evening into the rain to go for a drink together and meet friends.

Sam just like a young man of his age popping out for a drink with his sister and friends.

So why am I anxious ... ?

Well, you know ...

But I'm sure it will be fine.

Only a couple of days ago he was having to be restrained from leaving the ward.

It really, really is so good to see him doing normal things even if I am worried about the outcome.

If we never let him act well he never will be well.

If we always treat him like a patient he will always be a patient.

On hospital wards Sam says he is always treated as a patient rather than a person.

That's why he finds it so difficult to be a person rather than a patient.

The phone rang last night.

There was nobody there. Well there was. It was quiet but the line wasn't dead.

"Hello." Several times. No reply.

Then there was a sound similar to that from the pay phone that Sam calls from.

So I dialed 1471 to get the number of the last call. It was Sam.

We phoned the pay phone number expecting Sam to answer. But it kept ringing. Then a woman answered. Yes, she'd get Sam.

A little while later Sam answered. Kind of. He wasn't coherent. He couldn't answer questions. He was silent at times.

So we rang the ward. Yes, he'd been poorly since tea time.

I wonder how often that is the case and they don't let us know?

But today when Jane picked him up he was fine.

They had a meeting with the psychologist, drove home, Sam rested then went for a walk with me then picked Nell up from work. Then a drink, a curry, a game of cards, a game of chess, watch some television ... then bed.

It seems like a full day to me.

Before Sam was first sectioned he stayed for a week at some sheltered accommodation. It was a kind of respite for us. But of course then others saw how poorly he was.

One member of staff in particular persuaded us that it would be good if Sam was sectioned - to go into hospital for a short while, where they could really work with him and help sort him out.

We were desperate then and easily persuaded though it now seems the moment when the mental health services really got their claws into Sam and the start of much going badly wrong.

Sam sees it like that. When we were first in France just a year ago he was asking us how we could ever have agreed to it.

Today Jane met that member of staff at a meeting. She came over to Jane afterwards and said how upset she was at how things had worked out, that she knew she had persuaded us and she knew how badly wrong it had all gone and that she had huge regrets and guilt over the whole thing.

Then Jane was reassuring her, about how we all try to make decisions for the best.

A carer reassuring a professional. It would be nice if it was the other way round occasionally.

The rest of the weekend went well - except that Sam was asleep for a good part of it!

But he chose to take some books back with him to read. I'm finding it difficult concentrating enough to read books. Sam reckoned he stayed awake until four in the morning on Monday morning, reading - after an evening with friends where he'd gone to bed early.

This isn't the model of someone with serious psychosis.

On dropping Sam off I tried to talk with his key nurse about his medication and how he's been and ...

but I'm not sure how well we communicated though we were both trying.

Jane rang Sam today. He seems well. He's not done much - but he'll be back home again in a couple of days. Makes one wonder why he's there at all really.

I'm not sure why I started to get upset on Thursday.

We'd been having conversations with the ward about some test results for Sam and with Assertive Outreach and it all started to get too much again. I'm not sure why. I thought I'd been doing so well. I've been feeling really quite string recently both physically and emotionally but it just showed me how fragile I still am underneath it all.

I never know I'm worried or upset until I start crying.

It was about Sam's move to a local ward.

I think.

Regular readers will know this has been going on for a long time. But nothing has happened really. Nothing. Then we find that Sam's care co-ordinator is off and not expected back until the end of the month. So we feel cross. Then we find out that it is a bereavement so we feel guilty about feeling cross. But we then don't know what to do next. How can we get something moving?

And we've had the date of Sam's Mental Health Act Tribunal. It's weeks away - and we'd planned a weeks holiday starting that day. We'd booked the flights. And if we change it then it will be delayed and what impact will that have on Sam's state of mind ...

Jane was also getting upset about phone conversations with the consultant about reducing Sam's medication because of the test results. We pleaded with him not to put it up when Sam arrived there but he ignored us. Now he just says - well, I can reduce it back to where he was then if we want. If we want? If he does that Sam will become really ill with rebound psychosis. It happens if antipsychotic medication is reduced too quickly. Strangely psychiatrist don't seem to know that. They only know about increasing medication - not decreasing it.

Jane picked Sam up on Friday. We went out on the evening to a concert. It was a club atmosphere so it was possible to come and go. Sam popped out a few times for a cigarette. The last time he as a long time. Jane found him outside laying on a bench. But he came back in soon then sat a little away from us. With those staring eyes again.

It was clear Sam was not well.

We decided soon go home at the next interval. Sam went ahead to have a cigarette. I followed shortly behind to find him with a group of young men sharing drink and cigarettes and ...

How does Sam find them?

It was a folk concert but Sam seemed to have discovered a group of "folk punks" or something!!!!

I managed to get him away and we went to the car.

While we were waiting for Jane Sam started to shiver violently. I tried to hold him as best I could. Jane arrived and we drove home.

We gave him his medication and tried to persuade him that bed might be an idea but his mind was buzzing. It also turned out that he'd lost his tobacco. Another reason for getting him to bed soon. Eventually he agreed it was a good idea. Jane was exhausted from the day and went to bed as well. I stayed downstairs trying to sort out a virus that our computer had caught that day despite our expensive protection.

Every five minutes Sam came down.

"I'll just get a cigarette."

"You don't have any tobacco Sam. We'll get some in the morning. How about going back to bed now?"

"Oh, okay."

This was repeated every five minutes for nearly an hour. Then Sam pushed past me roughly.

"Sam, don't do that."

We talked a bit more.

"You could do with keeping a spare packet of tobacco somewhere."

Then he remembered. There was a spare packet left over from a lot that friends had brought him from abroad. He searched and we found it.

So a cigarette and then bed. Then back down for another cigarette. I was working on the computer trying to sort out the virus problem when I heard him come back in having finished the cigarette outside. I then heard the peeling of foil from the back of his tablets.

"Sam!"

I rushed through to see if I was right. Yes he'd sensibly helped himself to his medication. Except of course that he's already had it a couple of hours or so before. Maybe he'd sleep well!

He was down again a little later for another cigarette and a midnight feast. (Well two am feast actually.) Then he went to bed and settled. I dragged myself upstairs a little after - the computer virus still not sorted.

Today?

He's been fine. Really well.

These blips just seem to be so short now.

We've lost track of the number of teams that have had responsibility for Sam over the years. Never mind how many psychiatrists, psychologists, etc.

I've had two psychiatrists, two counselors and two occupational therapists myself.

My counselor when I first became ill said I would need at least 20 sessions - you normally only get six on the NHS. Maybe she needed the work. To start off with it was great to have someone who would listen - but that's all she did. Then I began to find a negative, reproving look in her face. A dismissive tone, almost critical. I felt I could almost see a sneer on her lips. So I stopped going. We were probably close to or past the twenty sessions anyway.

I was able to arrange some more counseling sessions through work. He was a man. Somehow I always thought I would find it easier to talk with a female counselor. Just experience I guess at how poor we men are at listening to each other. But he was great. He didn't just listen, he was proactive, gave me homework but never scolded me for not doing it. He taught me exercises for the tension in my back, shoulder and neck muscles. After the initial six sessions he managed to persuade my employers to pay for another six.

Twice we even hugged. (Those are the only other times I wished he was a woman!) Perhaps I should explain ...

The first time was after my interview with a doctor who was to decide on my early retirement. His diagnosis I agreed with totally - but he felt it did not fit the criteria for release of my pension.

I could hardly stand and had to be helped out. I asked to sit down. I was taken to a neighbouring consultation room. I lay on the floor and wailed. You've never heard such a sound.

They sent a nurse in. Then the office manager came. Then they sent for my counselor. He was working in the building that day. He told me how to breathe. Helped calm me. Gave me a hug.

I needed a hug. Some personal contact. Some consolation. I'd believed I could get better if I got my early retirement. It had all been taken away from me.

In our counseling sessions he'd introduced me to grief therapy. That it wasn't just about bereavement but could be about the loss of "hopes and dreams". We discussed this in relation to Sam and the fact that there was no "closure" as in a bereavement.

And the whole point of this long emotional introduction is to point out a paragraph in an article by Maureen Lipman in the Guardian recently which moved me ...

Most of the time, these days, I think I'm over my own bereavement. Halfway back to normal, using work as a grief therapist. But there are countless moments when emotion quite unreasonably overcomes one. Alone one evening after eating a meal I'd carefully cooked for myself, I stood up and said out loud: "Right then, love, what's for pudding?" It was the word pudding that finished me. Don't ask me why. It was the sound of his voice in that comical word. People say, have a holiday, counseling, take up tai chi, get into genealogy, move house ... I should, I know, but I can't move anything, until I take his hat and coat out of the wardrobe.

When I dropped Sam back on Monday - after a great weekend - I even managed to ask about the results of his hospital tests.

He'd been a few weeks ago. He's put on an awful lot of weight since he's been at this place. When we've mentioned it they've joked it off.

"Oh, yes the food is so good here we all complain we're putting on weight," say the nurses.

(Not several stones in as many months.)

and

"He can always ask for the healthy option!"

(When there's chips and chocolate cake and he's starving because the medication enhances his appetite?????)

But one day a nurse saw him without his shirt and saw he was developing breasts. So they took him to hospital for a blood test. To check on his prolactin levels. Though Sam wasn't told why. He thought it was something to do with his heart again and the reason he'd come off Clozapine.

On Friday when she picked Sam up Jane asked if they had the results yet. Nobody could find them. They'd put a note in the diary. Ask again on Monday.

And I remembered to!

At first nobody knew anything but eventually - yes they had the results, but no they couldn't tell me what they were (Sam was with me throughout this discussion.) I would have to talk with the doctor. I can't wait. Unfortunately he won't be at the hospital again until Thursday ...

The four of us together in the living room, laughing and joking.

Sam and Jane were playing a game of cards. Nell stood by the fire warming her bum, looking at magazine article I'd pointed out to her as I finished a glass of wine.

The room was full of love and good humour.

A perfect family.

Many would be so jealous ...

But I didn't even feel sad at the "might have beens". Maybe without what we've been through we wouldn't have the same love and closeness. I just enjoyed the sensations of us all being together so happily.

Jane picked Sam up this weekend. I'll be dropping him back tomorrow.

It's gone great so far. Despite his blip last week everything has gone fine.

On Friday he suggested that he and Nell go out for a drink together. Nell rang a friend and it seemed there was a birthday party at a local pub. So they went!

I was a bit concerned. Just the noise and people and the possibility of too much drink. A few weeks ago at a party that we took him to he managed for a while but was happy to leave early. Anyway on Friday he was chatting with people, dancing and even made sure Nell got home safely when it was she who had a little too much to drink!

He liked playing the big brother.

Lunch with some relatives who visited yesterday and a walk - then round to my parents in the evening. We've even been out today to an event with friends. Sam's coped fine with it all. Really well.

I do think we are continuing to make progress despite last week's blip.

Fingers crossed.

Yesterday there was a good programme on BBC Radio 4 about carers and mental health. It was called Caring Beyond Reason.

I listened to half of it before leaving the room having felt I was listening to someone else tell our story.

You can listen to the programme by clicking here.

We've been so pleased by Sam's progress. I wrote the other day to impress on his care co-ordinator how well he is. What a great weekend he'd had. He's not had a relapse since a few days before his last Managers' Hearing. I wanted to impress upon those making decisions about his future how well he was.

Then we phoned Sam yesterday ...

He couldn't hold a conversation. He couldn't concentrate enough to continue two sentences on the same subject. He was worried and confused. Staff said he'd been pacing the corridors all day. He'd been trying to abscond. He got out once and was picked up by staff at the corner shop.

Lets hope it's just a blip again.

He seems better today and says he cannot remember what was going on in his mind yesterday - it's a complete blank.

We're still waiting to hear if Sam has got a place in the local rehab ward. The saga seems to go on and on as always.

It was proposed when Sam was moving on from the secure ward but it was felt that this closed rehab ward would be a sensible interlude.

So ...

The decisions about a proposed move go on and on. Sam has been the most patient. He's the one who has to put up with where he is now.

The last we heard was that the consultant was going to look at his notes - was that last Thursday or the Thursday before?

Or maybe the Thursday before that.

I forget.

Sam's care co-ordinator had told Jane she was hoping to visit Sam at home over the weekend but ...

... she didn't. We didn't hear from her. We had hoped for some news. We try not to pester them. We worry we're seen as trouble makers. So don't want to make a fuss.

I rang her Monday morning. Busy. On the other line. She'd phone back. Which she did.

About four o' clock.

So I asked if there was any news. I suddenly realised how anxious I was. I hadn't realised until I stuttered and stammered and quickly put the phone down when she said she would phone the psychiatrist to find out. Then I realised I'd said nothing about how well Sam was and she was going to speak with the psychiatrist who was going to make decisions based on five week old reports from staff who spent no time with Sam anyway. So I phoned back. But she was already talking to the psychiatrist on her mobile and had me on the landline stuttering again and quickly ringing off apologetically.

And then I waited.

It would have been nice to have gone out for a walk in the last of this winter sunshine that was soon to disappear. But I waited.

She hadn't got back to us by the following afternoon so Jane phoned. She was in a meeting.

Late afternoon she phoned.

She'd been on leave, the ward manager had been off sick, so the consultant hadn't looked at Sam's notes. In any case she was emigrating soon and yet another consultant would be taking over - and might even visit Sam where he is now.

But are we talking hours, days, weeks, months ...

How long before Sam gives up hope and does something stupid ... ?

Or just lets the madness take over again.

We had a great weekend.

Sam was great.

Nell was great.

It was all great.

Sam's cheerfulness. Snowballing in the countryside with Sam and Nell. Well - I just took the photographs. The snowy views. Sam so involved in his chess. A meal with friends on Sunday evening to welcome Nell back - but a welcome for Sam also. He hasn't been so well for ages.

Nell and a friend took Sam back on Monday. Sam managed to get up in the morning and they set off with flasks of soup and warm clothes. Nell wanted to climb a hill. Which they did and played 'tig' and stopped at a pub for a drink on the way down and got Sam back too late for tea so bought fish and chips and ...

... and had a good day out. Having fun. Like Sam hasn't had for so long.

Sam's back for the weekend ...

really well ...

just waiting for the take-away curry to arrive ...

* sigh *

Meanwhile I've just found this blog:
Am I Still Me?
and was very moved.

It was a good weekend.

The four of us together for the first time for over a year. Sam was well. He went out with Nell to meet her friend at the pub. He was enjoying the company of younger people again and coped with no problems.

We had a few games of chess - a couple of very good ones.

My parents came for dinner on Sunday - the six of us together. The last time must have been ...

Well, a lot has happened since then and I bet Sam wasn't as well then as he seems to be at the moment.

Sam went out on his own for short walks and to the shop to get some tobacco with no problems. It's real progress and the longer he goes without messing up gives us increased confidence.

The only slight downer was on the way back in the car Sam asked for some Lorazepam which he can have PRN as he was really "wired". Maybe it was anxiety at going back to a locked ward after a relaxed weekend. Jane rang later and he was fine. He'd been to the pub with a member of staff for a drink and a game of pool.

We're still no closer to knowing what is happening about Sam moving on. The psychiatrist of the local rehabilitation ward was supposed to have been looking at Sam's notes on Thursday but we've heard nothing. Sam's care coordinator has been on holiday for a week but rang us as soon as she got back. She said she'd chase things up - but we've heard nothing yet.

It was so lovely to have Sam and Nell back together ...

Just great. It made us really happy.

Nell's got lots of plans. For herself - but also for Sam. She wants to try to arrange some outings for him on his weekend leave. She seems very eager to get involved in a hands on way.

She loves Sam too.

It's been hard for her in a different way. Siblings can get left out when the small amounts of support are being given out.