Sunday, January 28, 2007

The Government Has Mr Mans Axe

“Hope things are ok Mr Mans Wife, things are very quiet on here at the mo. Hope things are going good”
Slurry from Surrey
Slurry, thank you for your concern for our welfare due to my lack of posts recently; I really appreciate it. Sorry for not updating my blog sooner.

I hope you don’t mind but I have decided to write my reply as a post in case others have been wondering why things have been so quiet on here recently as well.

Things have been ticking along quite nicely, thank you for asking. No major upsets (until last night, which I will come to shortly), but although Mr Mans concentration has improved greatly since changing the Risperdal to Abilify, his anxiety has worsened, so as usual it’s a balancing act, getting used to coping with a different set of problems. He was a great help to me while my own symptoms were bad though, and his confidence in cooking microwave dinners is growing!

I did start writing a post to follow on from where I last left off, just after Mr Mans first hospital admission, but I kind of got “stuck”. Obviously it’s not “writers block” in the traditional sense of the word as I don’t need a great deal of imagination to simply retell real life events, but I struggle in other ways. Although I have received the compliment of having my writing described as being “eloquent” I really feel that my amateur efforts don't always do our experiences justice, and I struggle to know how to even put my own feelings into words. I also struggle to know what to include and what to leave out, and to remember the order of events. Hopefully I’ll get back to finishing that post soon though.

In the mean time I telephoned Mr Mans respite home this weekend to book him in for a couple of nights in March…

Some time last year we received a letter explaining that due to cutbacks Mr Mans respite home may be closing. I’ve been expecting to receive another letter to confirm whether this is to be the case or not, but have heard nothing. Last week I bumped into a lady in town who I know uses the same respite home, and she told me that it is to stay open, although some services have changed. I was relieved. However, when I phoned this weekend to book Mr Man a bed for a couple of nights, it was only after I specifically asked how things would change for Mr Man that I was told that each person is now only allowed to have two respite breaks a year, instead of the previous three. (This is where I start to struggle with being eloquent)

Before Mr Mans first stay at the respite home he was assessed, and it was decided that he could only stay for a maximum of three nights in a row. He didn’t often stay for the maximum stay allowed, only perhaps in the summer, and the other two breaks he would stay for one or two nights while I got away for a couple of days. As I’ve said previously, I don’t actually need a break from Mr Man, but everyone needs a break away from home and the realities of life now and again. Mr Man wouldn’t be able to cope with coming with me on a holiday, so my only choice is to leave him in respite while I get away. We’re talking about maybe six nights in a whole year, broken up into three mini breaks. Now I can only have two mini breaks a year.

The thing is though, it’s not like I even ever have an actual holiday. I use those respite breaks to be able to go to religious conventions and assemblies three times a year, which are very important to me, so I spend each day concentrating on the program, and then by evening I’m exhausted. Still, it’s a change of scenery and I wouldn’t miss a convention just to go and picnic on a British beach somewhere (and lets face it, there’s no time for me to actually leave the country and come back again), but I do wish I could have a proper holiday sometimes. This particular time in March I was planning to visit some places of interest on one day, and go to the assembly the next, and that is the closest I was going to get to a holiday for the first time since 2003.

I cancelled the two nights I had just booked, and when I put the phone down I started to cry. Mr Man feels so guilty, but I tried to explain to him that it’s not his fault; he can’t help it.

As well as the obvious disappointment I’m angry that they didn’t write to me to let me know what was happening. I asked the brainless Jim about this (that dozy bloke who is supposed to be Mr Mans care worker in the respite home), and he said to me: “Well because [Mr Man] is doing so well, we thought it best not to phone because it’s not always a good thing to remind people that they’re in need of services”.

Oh really? Well don’t worry about that mate; we still have the memory of Mr Mans two month long relapse after being left alone for two nights* to remind us that he is still in need of services. And weren’t you the one who said that Mr Mans respite breaks are for my benefit, so that I can get a break? Didn't you think I needed to know that these services were being reduced? And when exactly was the last time I had a carers assessment to see if my needs are being met? And who exactly told you that Mr Man was doing “so well”? Mark, Mr Mans CPN, the eternal optimist who thinks everything is fine as long as Mr Man hasn’t chopped his own head off, and who hasn’t actually seen Mr Man since November? How the hell would he know how Mr Man is doing? Mr Man gave up telling him how he feels months ago.

Still, he really hasn’t chopped off his own head, has he? So I suppose things really are fine. Or maybe it's just because the government has his axe at the moment.

*Due to lack of beds in the respite home, Mr Man had to stay at home on his own for two nights while I went into hospital for an operation in August.

Friday, January 05, 2007

First Hospital Admission

Continued from "One Flesh"
May 2002

Just lately there have been quite a few news articles and posts on other blogs relating to mental health issues which have inspired me to want to write my own views on the various topics. Of course that’s all very well but it takes me away from my original purpose of writing this blog; that is to relate our own experiences in coming to terms with living with Schizophrenia and in dealing with mental health services. The logical thing for me to do would be to continue writing “our story” and in so doing I will probably make my views on the other various topics obvious in time.

In the post entitled “One Flesh” I left our story at the point where Mr Man had become so suicidal that he really needed 24 hour care, which of course I couldn’t give, and so he was admitted into the psychiatric ward in our local general hospital.

It was a Friday, and I remember that it was sunny. We had been to see his Psychiatrist that afternoon as an emergency appointment after Mr Man had admitted to me the night before that he had thought about waiting until I was asleep before attempting suicide. The Psychiatrist asked Mr Man where and how he had planned to kill himself, and he gave clear and precise answers. This was enough to show her that he was serious about his intentions, and she immediately phoned the ward and had one of the emergency beds arranged for him.

It must have been about 6 pm as we loaded Mr Mans bags into the boot of the car. This was a move we had tried to avoid for so long and yet now although there was a feeling of uncertainty I also felt that a weight had been lifted from my shoulders. I’m not sure why, maybe because I felt he would be “looked after” and I wouldn’t have to fear for his safety anymore. Maybe because I thought this would be the start of a recovery for him. That feeling of relief was short lived though; walking away from the hospital that night was one of the hardest things I’ve ever had to do.

The admission took hours, literally. There were lots of forms and paper work for the staff to fill in and lots of waiting around for doctors and such like. The staff were very friendly though and I really appreciated the fact that they showed me around the ward that would be home to my husband for a while. His bed was in a bay with 5 others and coincidentally the man in the bed next to him was Darren, mentioned earlier, who Mr Man had worked with previously. We didn’t realise this at the time though, and it wasn’t long before Darren was moved on to the Psychiatric hospital at the other end of town.

Although everyone was very friendly it was still quite nerve wracking being shown around. Everything was new to us, neither of us knew what to expect, and the whole ward was full of people - strangers. These strangers would look at us as we entered the room, and it all felt very awkward. We were shown into the lounge where some people watched TV while others played board games, including one of the nurses. It wasn’t an atmosphere that we had experienced on a hospital ward before; it was very relaxed and it was immediately apparent that everyone knew each other very well. Although they were all very accepting we felt like outsiders, unfamiliar with even the concept of a mental health community.

There was no room for privacy anywhere. Mr Man must have felt this more than I can imagine but of course at this point I didn’t know that he felt that he was being watched all of the time. It must have been very hard for him to not even have any privacy when he went to bed at night, something I expect most of us take for granted. But of course privacy was the one thing he couldn’t afford to be given; privacy was dangerous for him.

It was late by the time I left the ward that night. As I looked back through the little window on the locked ward door I could see Mr Man sitting on the edge of his bed; his hands in his lap, looking down towards the floor, looking abandoned and lonely. I wanted to take him back home with me again. I wanted to hold him and protect him and make him feel safe and loved, instead I felt guilty of making him feel vulnerable and abandoned. It was a dreadful feeling. It was so hard to let go and trust others to keep him safe and yet I knew I couldn’t do it myself anymore. I drove home alone that night and went into the dark empty house. It was so quiet. I went straight to bed, alone, thinking of how alone Mr Man would also be feeling.

"First Admission" by Philippa King

For so long I had been used to barely leaving the house for fear of Mr Man harming himself without me there to protect him. Now suddenly there was nothing to stay home for. The house was so empty and quiet. It wasn’t a home anymore, only a house. I couldn’t bear to be there so each day I would get up and go out and stay out for as long as I could. I would do anything: window shop, visit friends or family, or just drink coffee on my own in a cafĂ©. Most times I stayed out all day until it was time to go to bed. The rest of the house was hardly used and most of the time I ate out or bought ready made sandwiches to eat in the car on the way to the hospital. There were times when I felt that I really needed to be alone and yet the house was just too lonely. I suppose I didn’t really want to be alone, I just got tired of talking about the situation all the time with other people. I know people cared about Mr Mans progress, how I felt, and how I was coping, but I didn’t want to keep talking about it all the time. I wanted to talk about “normal” things. I needed a break from the reality of the situation. That sounds really selfish now; after all, what break was there for Mr Man? But these were the times when I would buy myself a microwave meal on the way home from the hospital and pick up a DVD from the video shop and just “switch off” for the evening. These times were the longest periods I spent in the house, but I spent them “somewhere else”, not wanting to think about the fact that I was alone, or why.

After 3 hospital admissions I can now say from experience that the first 3 weeks after admission and the first 3 weeks after discharge are always the worst - yes, even after discharge. Each time there is a complete change in routine and that can be so hard to get used to.

Back at the hospital Mr Man was having to get used to a new routine of his own. Whereas I was having to get used to being alone, Mr Man was having to get used to the constant company of strangers, which in itself brings a different kind of loneliness. He was used to me always being there for him, but now I could only visit for a few hours in the evening*. There were activities on the ward each day organised by the Occupational Therapists and he was encouraged to take part. This was a big change to hiding away in bed for 18 hours a day. I think most of the activities seemed tedious to him but he played along thinking that he would get into trouble for not trying to help himself if he didn’t. Also he thought that by doing as he was told he could be discharged sooner. The meals were good and he got to choose what he wanted from a menu the day before.

The ward was a mixed sex ward and the patients were quite varied – different ages, different races, different psychiatric problems – but they all had one thing in common: they all seemed to feel secure in the knowledge that everyone around them was just like them – broken in some way – and no one would judge them. There was a strong feeling of community and understanding between the patients, and the staff interacted very well with them. Often it was hard to tell who was the patient and who was the nurse as the nurses didn’t wear a uniform and there didn’t seem to be any air of superiority from them. They would sit and play board games with the patients, or chat and laugh with them.

There were a few patients who seemed “strange” but mostly they were all very “normal” and friendly – perhaps not what people would expect to find on a Psychiatric ward. Actually, I’m not sure what people expect to find on a Psychiatric ward. Most patients suffer some kind of depressive illness, and yet the atmosphere wasn’t depressing. People played CD’s, chatted, played pool and watched TV. The ones who obviously needed some time alone were left to be alone, and yet would occasionally receive an “are you ok mate?” from another patient. Together they seemed to have a strong community, but individually they were all suffering inside.

*Visiting times were different to the other wards in the hospital. There was a short visiting period at lunch time, and then from 6 pm – 10 pm in the evening.

Next: "The First Three Weeks"