MP Response to “The Letter”

Before sending “the letter” to our local MP I waited until I had seen Mr Mans CPN, to see who else he thought I should send a copy to. Last Thursday I posted four copies: one to our local MP; one to the Acting Manager for our local Community Mental Health Team; one to the Chief Executive of Mental Health in our area; and one to the Director of Mental Health in our area.

Today I received a reply from our local MP which read as follows:

Dear [Mr Mans Wife],

Thank you for your letter dated 15th March 2007.

I am so sorry to hear of your difficulties but thank you for bringing them to my attention.

I have written to the Secretary of State for Health, Mrs Patricia Hewitt MP and to Mr [A N Other], Chairman of [our area] NHS Trust. I will of course contact you again as soon as I receive their responses.

Yours sincerely

Well, I finally know who this “Patricia Hewitt” person is anyway…

Blogroll Update

I thought it was time for an update in my links list, as some of the blogs I like seem to have “disappeared” and there are other blogs that I’ve wanted to add.

The last time I posted about a blogroll update I mentioned that for some unknown reason “Up the Down Escalator” (the husband of a Schizophrenic) seemed to have been replaced with an article about Folic Acid. Well now it seems to have disappeared completely, with only a “Not Found” page from Blogger displaying, so I have decided to remove this link from the side bar. The “Sibling of a Schizophrenic” seems to be going the same way with an unrelated advert displaying instead of the blog, so I will remove this one also. And “A Schizophrenic Dad” (the daughter of a Schizophrenic) appears to now be “invitation only” so this one will also be removed as I have no idea how to contact the author to ask for an invitation!

It’s a shame because besides being interesting reads I also like the idea of people being able to read about mental health issues from lots of different angles.

Thankfully I now have some other blogs to add to my rather short links list!

Seaneen is a girl in her early 20’s suffering from Bipolar, also known as Manic Depression. Some of her symptoms are similar to Mr Mans in that she also suffers from hallucinations and delusions. It has to be said that her posts are very enlightening and are excellent reads. You can read more about Seaneen in her blog entitled “The Secret Life of a Manic Depressive”.

Marlena also suffers from Bipolar. Her blog is an interesting combination of writing and comic strips, where she introduces us to her wise four legged companion “Elvis” and her partner “Denzel” who she draws as a guitar! Marlena is currently off her medication as she and her partner are having a baby (Congratulations Marlena and Denzel!). Marlena’s blog is entitled “Bipolar Notes From Underground”.

Catherine is also a “20 something” who is a teacher, a student, and a mother, and has been diagnosed as a Bipolar sufferer, although she questions this diagnosis herself. Her posts are very moving as she is very open about her feelings, often leaving me speechless. Her blog is entitled “A Long Walk to Forever”.

And finally, a blog by a man who suffers from Schizophrenia, who calls himself “Doctor Goober Modesty” or “The Fly”. The Goober emailed me quite a while ago to ask if we could link to each other to hopefully help to increase traffic to each blog, and thus awareness of mental health issues. Well I’ve finally got round to it! Doctor Goober also has a website where he exhibits some of his art which he tries to sell to “help get [him] out of the poverty that Schizophrenia brings upon individuals”.

All of these blogs can be found in the links section in the side bar.

“The” Letter

Well, I’ve written “the” dreaded letter. I’m not sure if it really covers everything I want to say, or if it says it strongly enough, but I didn’t want to a) make my letter too lengthy, or b) make it sound like I hold him personally responsible for the cut backs (you know, I didn’t want to write “I hope you die!” or anything). So, I hope I have got the balance just right. I just want to say thank you to everyone who has commented on my blog before; you may notice that I have used a couple of points from the comments section in my letter. I haven’t sent it yet, so maybe you could give me some feedback on what you think? It’s quite difficult to try to read it from another persons point of view. Knowing me, I’m bound to change the wording a billion times before I send it anyway.


Dear [Local MP],

You have no idea how much I am struggling to write this letter. I want to write to you about the issue of cut backs in mental health services in our area, but it’s very difficult to find the words to express how I feel. However, I feel compelled to at least try, after someone recently said to me: “You might only be one voice saying what needs to be said but there are lots of people in the community that share the same problems that may not be able to speak out.”

I am a carer for my husband, [Mr Man], who suffers from Schizophrenia. This year we will be celebrating our 10th wedding anniversary. [Mr Man] first became ill around November time 1999, after just two years of marriage. He was eventually medically retired from his job of 13 years in September 2001, and spent a great deal of time in hospital during 2002 and 2003. Since then he has been prescribed various medications and he is now making good progress. Life is still very difficult for him, and the little every day things that people like you and I take for granted create an unimaginable amount of anxiety for him.

For a very long time I was unable to leave [Mr Man] alone for even the shortest amount of time due to his anxieties and self harming/suicidal tendencies. This is gradually improving, but there are still limits as to when, and how long, he can be left. As you can imagine, this has made life every difficult at times and has meant many sacrifices.

The last time we were able to take a holiday together was just over 7 years ago, in October 1999, just before [Mr Man] became ill. To ask him to accompany me on a holiday now would be out of the question. For him, the anxieties surrounding a break away from home are many and varied, and he would be incapable of engaging in the usual “holiday activities”. Just a few weeks ago he began vomiting at the thought of an evening round a friends’ house and having to mix with other people.

Personally, I feel that I really need a break away. Not from [Mr Man], but from the usual day to day routine – I’m sure most people can relate to that. My only option is to take a break without [Mr Man], but of course, I wouldn’t be able to leave him at home alone.

Over the last couple of years I have been able to get away for a night or two, maybe three at the most, for a maximum of three times a year, while [Mr Man] stays in a respite home in [a nearby town]. This has equated to maybe six nights a year in total, divided into three mini breaks. I value these breaks tremendously, so you can imagine how distraught I was to find that, due to cut backs in mental health services, we can now only use these respite facilities twice a year.

Personally, I never felt that three mini breaks a year were adequete anyway, and now we only have two. I am told that in some other areas of the country, service users are entitled to two weeks every three months. That’s four breaks a year, totalling eight weeks. I’m not complaining about the length of each break though, because I wouldn’t want to leave [Mr Man] for any longer than three nights anyway; he couldn’t cope with any longer than that. But I feel that two breaks a year are disgracefully inadequate.

Although we have been using the respite home for maybe two years now, my only “holiday” since 1999 was in 2003 for three nights, while [Mr Man] was an inpatient on a psychiatric ward. This is because I choose to use the limited time [Mr Man] has in his respite home to go to religious conventions and assemblies, which are three times a year. These are very important to me, and as an ME/CFS sufferer, I find it near impossible to travel to and from the venue in the same day, so I need to be able to stay over night in a hotel near by. This obviously leaves no respite breaks free for me to be able to actually go away and enjoy a holiday, but now there are not even enough breaks for me to go to all three assemblies either.

I realise that this is completely my own choice, but I doubt that two short breaks a year would be sufficient for any carer, particularly one who is restricted in the amount of time he/she can spend away from the home on a day to day basis. Most people in employment working an average of 40 hours a week are entitled to four weeks holiday a year. As a full time carer for 168 hours a week, it seems I am only entitled to three days, twice a year.

I have lost count of the amount of times I have had to decline invitations for holidays, weekend breaks, or even just day trips. I would dearly love to visit my family in Norway but I have had to accept that this will probably never happen, as a three night break wouldn’t be long enough anyway. This weekend I have had to decline an invitation to our friends’ engagement dinner, as it is in another town and would mean an overnight stay.

Last summer I needed to go into hospital for an operation, and there were no respite beds available for [Mr Man], forcing me to have to leave him at home alone for two nights. I was told that there were “emergency” beds available, but that [Mr Man] didn’t qualify as an emergency. However, if [Mr Man] was to become very ill while I was away, then he would qualify. Despite making as many arrangements as possible to ensure that he was not on his own for long periods, by the second night he became very ill, and this led to a relapse which lasted two months. Of course, by the time he “qualified” for an emergency bed I was home again anyway, but his relapse could have been prevented if there was a bed available for him in the first place. This is another reason why I feel that more respite facilities need to be made available, to ensure the safety of service users if carers become unavailable unexpectedly or at short notice.

I personally feel that no other group of people would be treated so poorly. In my relatively short experience of mental health services, I have seen that instead of an increase in understanding of mental health issues over time, there seems to have been a decrease of such, with service users and their families being expected more and more to struggle to cope on their own. Already limited services are being cut back, leaving “service users” with no services to use. Carers who are already pushed to breaking point struggle to find the emotional strength needed to continually fight for the rights of their loved ones, whilst the patients themselves are usually too ill to do so. I think it’s shocking that such a vulnerable group of people could be treated in this way.

This brings me back to the comment made to me which I wrote at the beginning of this letter: the fact that there are lots of people in the community who share the same problems as [Mr Man] and I, but are unable to speak out. If my letter is the only one you receive regarding this issue, please do not presume that [Mr Man] and I are the only ones affected by it.

I hope you will give my letter serious consideration, and I look forward to hearing from you in due course.

Finally

He finally “got it”. Mr Man has been suffering from high levels of anxiety for so long and his CPN just kept telling us “It’s normal to suffer a certain amount of anxiety” and “Just keep doing it (whatever was causing the anxiety) and it will get easier”. Well, a few weeks ago we were getting ready to go to a friends’ house for dinner and Mr Man started throwing up due to his anxiety. And now Mark finally gets it. He finally understands what we mean when we tell him that what Mr Man suffers from is not a “normal” level of anxiety. He finally agreed to speak to Mr Man’s Psychiatrist about possibly changing his Diazepam to something else. Finally. But did it really have to come to this?

Generally speaking, Mark seemed much more human than usual during his last visit. I usually find it difficult to take him seriously for two reasons: one is that he looks like he ought to be a group member from The Village People; and two is that it’s difficult to take someone seriously when you feel like they haven’t got a clue. But this time, instead of handing out useless pieces of advice like colour swatches at a “blind” convention, he actually asked questions, and more importantly, he listened to and accepted what we had to say regarding Mr Mans anxiety. Finally.

After explaining how upset we were about the cutbacks at the respite home, he addressed the issue of my carers assessment and asked me: “Is this why you want a carers assessment? Are you hoping that once your needs are recognised they will be met?” I agreed that this was the case and he simply replied with “They won’t be. The services just aren’t available”. He then went on to explain how they are expecting many more thousands of pounds to be taken away from these services, and job losses too. No wonder he didn’t seem so cocky that day. “I feel a letter of complaint coming on” I said*, “Please do” he replied. I actually felt like we were on the same side for once. Finally.

Before he left, Mark still felt the need to advise Mr Man not to let his recent experience make him give up trying to go out, which Mr Man rather resented. He obviously still doesn’t appreciate how hard Mr Man tries to fight these feelings. Every week he forces himself to go out to play Table Tennis, and he physically shakes so much that even the other team members have started to comment on it. But he still goes, week after week. I’m very proud of him.

Maybe one day Mark will be too. Finally.



*This was nearly 3 weeks ago but as mentioned in my previous post I have been avoiding writing this letter until now.

Words Fail Me

Like a lot of people I suspect, I have difficulty in coping with stress and negative emotions, so I have been suppressing my feelings in the only ways I know how: eating and watching jolly musicals. Eventually I had to ask myself: “What exactly am I suppressing?” and I had to admit: “Anger”. Anger and frustration.

It’s been five weeks now since I heard the news of the closures of three respite homes in our area, resulting in Mr Man’s respite home only being able to offer two short stays a year. For five weeks I have tried to avoid the issue. I need to write a letter of complaint, but words completely fail me.

When I had to write a letter of complaint about Mr Man’s care in hospital back in 2002, and subsequently met with the Medical Director, the whole experience completely drained me emotionally. I was left exhausted and on the verge of a nervous breakdown.

In the same year I had to fight for Mr Man’s right to claim DLA (Disability Living Allowance) because the incompetent doctor that he was under at the time was insisting that Mr Man wasn't even ill, which meant numerous phone calls, letters, a meeting with the local MP, and finally a tribunal.

Now it seems I have to fight again, but I just don’t know if I can.

Where are carers expected to find this endless supply of emotional strength, to be able to continually fight for the rights of their loved ones? Or maybe that’s the whole point: pick on a vulnerable group of people who are unable to find the strength to fight back?

Questions from readers

I have recently been asked the following questions by an anonymous reader in the comments section:

“Why are you still married to [Mr Man]? What is it that keeps you going? Is it love, sympathy, duty… what? I am in a similar situation and I find myself harbouring thoughts of just letting go... please do share your views.”

It would be easy for me to just simply reply with: “It’s love, of course”, but I feel that the questions are deep and deserve serious and honest consideration.

I have touched on this subject previously in the post entitled “One Flesh”. I titled the post in this way because that is exactly how I feel – that as a married couple we have become one flesh. As such, whatever hurts Mr Man hurts me, and for me to consider leaving him would be like considering tearing off my limbs.

I never stopped loving the man I married, even though I didn’t know where he was anymore. As I mentioned in that previous post, I had to grieve the loss of my husband even though I was still with him, because the man I was left with didn’t resemble him at all. I had to cling to the belief that he was still in there somewhere and that somehow I would be with him again one day.

It is this belief that has kept me going, and slowly the man I love has resurfaced. I look at him now and think about what I would have missed out on if I had ended it all back then. I say “ended it all” rather than “leave him” because as I said, I never even considered leaving him as an option, but I considered ending the suffering for both of us. Although difficult to admit to, this again is something I hinted at in that previous post when I wrote: “I confess, I wanted to end the pain – for him, for me – but I have never wanted to leave him”. The only thing that held me back was that it might only have worked for one of us and that the surviving one would be left with even more heartache.

Later I reached the point where I felt that if he died maybe it would be easier for me to grieve for him and move on, rather than watch him continually suffer for the rest of his life. I would sit beside him on the edge of the bed while he slept and think about smothering him with a pillow and ending it for him, but I was worried that he would wake and not understand why I was doing it, and the thought of him believing for one second that I didn’t love him was unbearable. I am in no way recommending this as an option, but I want you to know that I understand the extent of your suffering which has lead to you “harbouring thoughts of just letting go”.

"Dark Thoughts" by Philippa King

There was a time when I couldn’t imagine ever being without Mr Man. I expect most newly married couples feel that way. I felt that without him my life would come to an end and have no meaning, and that I would never be able to move on and start a new life. I thought I would rather die than live without him. But the more suicidal Mr Man became the more my grieving took a new direction. Rather than just grieving the loss of his personality I was actually grieving the loss of his life, as I became truly convinced that he was going to die. I felt like I was married to a man with a terminal illness – I knew he was going to die I just wasn’t sure when, or that’s how I felt anyway. I found myself planning my future without him, which made me doubt my love for him and I felt incredibly guilty. This is why I thought your questions deserved honest consideration, because at one time I even wondered myself if it was love, sympathy, or duty that kept me by his side.

Obviously I have felt deep sympathy for Mr Man, watching him suffer in unimaginable ways. I have always believed, and still do, that mental illness is the worst kind of illness anyone could ever suffer from; after all, physically ill people can still be happy, but if you can’t be happy, what else is there? I can’t deny that duty must have also played a part somehow, but the main reason for staying with him was, and still is, love.

When he became less suicidal I found the adjustment quite difficult, as strange as that sounds. Although I loved him and obviously wanted to be with him, I found it difficult to believe that I wasn’t going to lose him, and to start planning a future with him rather than without him.

I am convinced that I am never going to meet anyone else like him in my life, and I don’t regret marrying him for a second. What we have been through together has in no way been easy, but we have gone through it together, and we now have a bond which is unbreakable.


Related posts: Coup de grace

Is there no end to the stupidity in this world?

Just when I think I have heard or read the most stupid thing I am ever going to hear or read in my entire life, ever, I come across something else that is even more stupid than the last stupid thing I heard or read.

The subject of stupid people is something I usually blog about in my other blog, but this post on Mental Nurse is obviously an issue which would usually be discussed here.

Is there no end to people’s stupidity?

But maybe it works. What do I know? I’m only the wife of a Schizophrenic.

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.

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 café. 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"

The Ghost of Christmas Past

Christmas is a lonely time for many people. Unlike any other time of the year the world seems to stop spinning and everything comes to a halt. In this country at least, this includes mental health services. This is just too much to cope with for some people; just knowing that no one is there for them if they need someone can cause an increase in anxiety. (See this news article)

Traditionally, it is a time for family and friends to come together. But some people don’t have any family. Many will be remembering lost loved ones. Elderly ones in particular may have lost their friends. Sick ones may struggle to form lasting friendships. For them, knowing that others are enjoying the company of people they love and who love them can make them feel more isolated than ever.

For some people, going to the shops each day provides the human contact that everyone needs. But the shops are closed. I know mental health patients who wander around town all day, preferring the company of strangers than no company at all. How will it be for those ones when the town centre is completely deserted? When there is no one on that bench to chat to; no playing children to laugh at; no struggling mothers to joke with?

Tomorrow people may be writing a list of all their final arrangements, or their last minute shopping needs. Why not write a list of people who you know live alone? Maybe they’re elderly ones; maybe they have an illness of one kind or another. Maybe give them a ring just to show that they’re not forgotten. Maybe pop round for a cuppa and take them a slice of cake. At the very least you may just make someones day. Or you could even save a life. Maybe.

Other Schizophrenia Blogs

Through being a member of Technorati I have realised that there are new posts on “Up the Down Escalator”, which is a blog written by a man whose wife suffers from Schizophrenia. Unfortunately there seems to be a problem viewing his blog at the moment and a completely unrelated page displays instead. Being a confirmed technophobe I have no idea what the problem is and can only hope that it is rectified soon as his blog makes interesting reading.

Also due to being a member on Technorati I realised that the author of “A Schizophrenic Dad” had kindly linked to me. It is written by a woman whose Father is a sufferer of Schizophrenia, and she details some frightening experiences that she and her family have gone through.

Through her blog I also found the blog “A Sibling of a Schizophrenic” written by a woman whose brother suffers from Schizo-affective-disorder which she describes as a combination of Schizophrenia and Bi-Polar disorder. Although she has been blogging since February 2005 there aren’t many posts to be honest, but I found her first post in particular very moving.

Today I became a member of Bloglines and from there I found the blog "Schizophrenia - A Carers Journal". This is a blog written by a man whose son has been diagnosed with Schizophrenia. I have not yet read through all of the archives, but from what I have read it sounds like they too have struggled with mental health services.

Links to these blogs can be found in the side bar to the right.

Edit: I have found a way to read the updates on "Up the Down Escalator". Once I had joined Bloglines I was able to add the web address - http://downescalator.blogspot.com - to my "feeds". Then I was able to click the link in my feeds list and view the full posts on the Bloglines website - after scrolling down past the unrelated post about folic acid. I hope this helps anyone who wanted to read it.

Related blog posts: Blogroll Update

Other therapeutic interventions

Tonight I am writing this as I accompany Mr Man at a table tennis match, which is one of his many “therapies” that he engages in. This is one that helps him to interact with other people in a setting where the focus is on a sport which he loves rather than on the actual interaction with others, which helps to ease the pressure in that area. He has found this particular activity very difficult in the past and still does sometimes, but looking back it’s clear to see that there is vast improvement.

We refer to last season (Sep ‘05 – April ‘06) as Mr Mans first season back in the game, but actually his first season back was the year before (Sep ‘04 – April ‘05). He had been discharged from hospital 9 months earlier and felt that the time was right to get back into the game after about a 7 year break. He didn’t cope very well though and a bad back saved him from the embarrassment of having to admit the real reason for dropping out very early in the season. Still, I was proud of him for trying; he knew it was going to be difficult but at least he still gave it a go. Dropping out in no way meant that he had failed; he just wasn't quite ready yet, but he was already planning to try again at the start of the next season.

I think the determining factor in the success of this “therapy” is the fact that it was completely his own decision to play, and then not to play. With any type of “therapy” that is considered a person with Schizophrenia has to be willing to give it a try otherwise the results will be counter productive for two reasons: Firstly, a person with Schizophrenia shouldn’t really be forced to do anything against their will that will take them beyond their comfort zone and that they might not cope with, as this may cause a relapse of symptoms, and there’s a fine line between being encouraging and being pushy. Obviously this means there is a need for trust between the Schizophrenia sufferer and the "carer", and knowledge of how much the person can cope with. I’m sure some people with Schizophrenia would have the tendency to play on their anxieties as a way of getting out of doing something they don’t want to do, but I don’t find this to be the case with Mr Man, and I know him well enough to know when to push and when not to.

The second reason is that obviously for any person, not just people with Schizophrenia, their attitude towards the therapy will directly affect whether they benefit from it or not. An activity will not help the person if they are unwilling or unable to enjoy the experience and thus benefit from its therapeutic properties. That’s fair enough; we all have our own ideas of what could be enjoyable or not, and what will benefit us or not, that’s what makes us all individuals.

Sometimes I think the approach used by health care professionals is wrong. When Mr Man was discharged from hospital in November 2002 after his first admission, he began Art Therapy. This involved him having to draw something – anything – of his choice while a Psychologist sat and analysed his behaviour and mannerisms whilst he drew. This didn’t work for Mr Man for several reasons: It’s not exactly a relaxed setting, or even a natural setting, for someone to engage in something creative; the setting itself inhibits creativity. Also I wouldn’t have said that Mr Man was really the ideal candidate for such a therapy; he didn’t believe he was ill or in need of therapy for a start, and he felt that this kind of thing was for people who had “issues” which he didn’t have. Forcing him to engage in this form of therapy merely reinforced the belief that he was being observed all the time. Encouraging a patient to engage in arts within a group so that they are not singled out would be much more beneficial. The setting would be more relaxed and the patient doesn’t need to know that he or she is being observed. This is how Art Therapy is conducted on the ward, although I suspect that it is used mainly to give the patients something to do. I’m not knocking it; Mr Man seemed to enjoy it while he was on the ward and if patients are finding a measure of joy then that has to be a good thing.

Of course at the time of the referral Mr Man was still in hospital and under the care of a Psychiatrist whose abilities and even his motives were somewhat questionable to say the least. He refused to accept that Mr Man was suffering from Psychosis and seemed determined to prove that it was either all an act (which begs the question why he kept Mr Man on the ward for nearly 6 months) or that his problems were due to his upbringing and his “unnatural” attachment to his mother, his sister, and even me his wife. More likely is that the Psychiatric Consultant in question was out of his depth, and out of a job, as his contract finished just a week before Mr Man was discharged. One nurse on the ward openly admitted to me that he felt the Psychiatrist had lost interest and didn’t care about the patients as he knew he would be leaving soon. Anyway, I digress, but it would be interesting to know if Mr Man would still have been referred to see a Psychologist for Art Therapy if he had been under the care of someone who knew or even cared about what he/she was doing. Mr Man only attended about 3 sessions with the Psychologist and then just refused to go to anymore, but no one has ever mentioned it to him as if the whole event was inconsequential.

Last season (Sep ’05 – April ’06) was the first “proper” season back for Mr Man where he played for the whole season. I remember accompanying him to games at the start of the season and he would physically shake and sweat all over. How he won a single game in that state I’ll never know. The next day he would begin to feel anxious over the following weeks match, and this is how he went on, week after week. Still, he didn’t give up and I admire his courage. As his Community Psychiatric Nurse has said (and I do agree with him sometimes) there is more achievement in the fact that he continued to play despite his anxieties and symptoms. Before his break away from the game he used to play in the Premier division, but although he played in division 3 last season (the lowest division in this area) I can’t express how proud I felt as I watched him collect his trophies at the end of the season. They represented so much more than simply outplaying his opponents, and there is no question that he worked hard for them and definitely deserved them.

He had some setbacks this last summer, and of course being away from the game from April to September during the season break means starting again in lots of ways, but this season he is coping much better already. He paces the floor at home for about half an hour before we leave, but I suspect this might actually have more to do with the journey as I have mentioned before. Obviously he still has his good and bad days though. Some weeks he finds it very hard to concentrate on the game due to the voices being so intrusive, and he finds it hard to interact with other players. He speaks when he’s spoken to but he has a very intense look about him and seems oblivious to what is really going on around him and just goes through the motions. One week he accidentally hit the opposing player with the ball several times, but because he was so distracted by the voices he hadn’t even noticed and he didn’t apologise. He hasn’t told anyone in his club what his problems are so it must have seemed very rude to some, but of course I knew that it was because he wasn’t really “there”. It was quite embarrassing and when he came over to his seat I had to quietly remind him to say sorry when he hits people with the ball!

Tonight he coped fantastically well, interacting with other players from several teams. I noticed that he approached people himself to initiate conversation, and he had a laugh with some players. He seemed relaxed and he played very well. As I type these notes up he is sleeping on the sofa, exhausted from the evenings events.

By the way, he won all of his games.

On a lighter note...

Whilst searching for Schizophrenia related blogs, I came across this: Could Schizophrenia “protect” against blindness?

The first thing that popped into my brain was “Are you recommending becoming Schizophrenic to avoid becoming blind?”

Apparently the person who raised this question has read an article (which I haven’t read) that suggests that blindness could “protect” against Schizophrenia, and wondered if the opposite could also be true. I have visions of psychiatrists everywhere reading this article and then poking their patients in the eye as a cure.

The debate continued with theories about cat owners developing Schizophrenia and whether less blind people are Schizophrenic because they own guide dogs instead.

Mr Mans response was “Some people have way too much time on their hands”.

Patient rights verses patient safety

June - October 2002

On Thursday I came across this news item which highlights a problem that unfortunately Mr Man and I are all too familiar with.

It is unclear whether the patient in this article discharged himself from the secure unit at the hospital*, was given home leave, or whether he escaped after being given permission to walk around the hospital grounds, as several articles (all from the same news website) differ slightly in details, but whatever the case, one thing is clear: he had not been assessed adequately to determine whether he was a risk to himself or others.

Once again I am moving into an area that I wasn’t planning on blogging about yet, but during Mr Mans first hospital admission this was just one of the ongoing problems that we had. Again and again Mr Man was released into my care for home leave, placing me under unimaginable pressure for days at a time, as he was very suicidal, but also he suffered from command hallucinations telling him to kill others. The problem was partly that the consultant and some of the nursing staff simply refused to accept that Mr Man was even suffering from psychosis, despite an assessment proving otherwise**, but also, just as the news article explains regarding the patient John Barrett:

"…too much emphasis was placed on [the patients] wishes and he was not assessed adequately."

In Mr Mans case, he wanted to go home as often as possible since he didn’t believe that he was ill, as is common with all Schizophrenia sufferers, but also, due to his psychosis he believed that the staff were working for “the company” and trying to control him with the use of medication. Due to these feelings he was understandably very keen to go home each time the consultant or other staff members suggested home leave, but that doesn’t mean that he was well enough to. Often he asked for home leave himself, and the staff never refused as it was thought to be a “good sign” that he wanted to go home. It was very difficult for me to say no, as I was always asked in front of Mr Man, and of course I had to be careful that I didn’t end up looking like the “baddy” who was forcing him to stay in the hospital against his will, and thus lead him to believe that I too was working for “the company”.

Although he had been through an assessment to determine whether he was truly psychotic, to my knowledge he still hadn’t been through a risk assessment at this point, despite being admitted due to feeling suicidal. He had already been in hospital for nearly four months before a risk assessment was finally carried out on him after he had cut his arm with a razor blade within the hospital grounds, and he was found to be a high suicide risk***. These results were largely ignored much like the results of the other assessment, particularly by the consultant on the ward. Just one week after being assessed as a high suicide risk the consultant said Mr Man could go home for some leave. Thankfully his primary nurse, who had conducted the assessment, ignored the consultant and only allowed Mr Man home leave for a few hours. Two weeks later Mr Man made a serious suicide attempt whilst on the ward.

From these experiences it is easy to see why some psychiatric patients who are released from hospital go on to commit serious crimes, or commit suicide. Often patients are not adequately assessed, and even when they are a number of problems can arise:

• There is a lack of communication between staff members (including consultants) about the level of risk.
• Staff members (including consultants) do not update themselves by reading patient notes.
• The responsibility is wrongly placed on the shoulders of an unqualified carer.
• Staff members (including consultants) disagree on diagnosis or treatment including whether home leave is beneficial or not.
• For a completely unknown reason to myself, risks are ignored by staff members (including consultants).

One factor that staff members fail to take into consideration is that whilst a patient may not be a serious risk to others or themselves whilst on the ward, the level of risk drastically increases once the patient leaves the hospital. This is largely due to the fact that the patient now has access to things previously not available to them whilst on the ward, such as knives, medication, alcohol, rope, and even privacy. This is one reason why the role of the carer is substantially more difficult than the role of the staff member, not to mention the fact that staff members work in shifts, whereas the carers role is an impossible 24 hours a day.

It was mentioned in one of the articles that the staff failed to heed the warnings of Johns partner. This is another problem that we faced often. In the days leading up to when Mr Man attempted suicide on the ward I had desperately tried to get someone to take my concerns seriously about his safety. Unfortunately no one did. This is something I will write about in more detail another time, but as Mr Mans current consultant has said recently “It’s a mistake not to listen to the carer”.



* One article states that John, the patient, could not be held at the hospital against his will, which is completely untrue. An “informal” patient, or someone who is in hospital voluntarily, can be detained for up to 6 hours by an authorised psychiatric nurse, whilst waiting for the doctor in charge to make an application to detain the patient for 72 hours under section 5 of the Mental Health Act 1983. Before the 72 hours has elapsed the doctor can then arrange for the patient to be held for a further 28 days under section 2, or 6 months under section 3.

** At the time it was explained to me that the assessments were “scored” out of 4; 1 being the lowest and 4 being the highest. In the psychosis assessment Mr Man “scored” 4, showing that he was suffering from a very high level of psychosis.

***In the risk assessment Mr Man “scored” 3, showing that he was a high suicide risk. The nurse who conducted the assessment explained that the only detail which prevented Mr Man from “scoring” 4 in the risk assessment was that he hadn’t decided on a location yet.

Anxiety

Apologies for no recent updates. It seems I spoke too soon and I am still struggling with my recent bout of exhaustion. I’ve also been very busy helping Mr Man with various projects that he is involved in at the moment.


As usual I am completely baffled by Mr Mans symptoms and how they are presenting. One of the most difficult things about coping with Mr Mans illness is the fact that it never seems to stay the same; we always have new situations that we have to learn to cope with. I’ve often said in the past (although not on here) that his symptoms seem to fluctuate in such a way that he will improve greatly in one specific area but still be very ill in every other way, and then he will seem to improve in a completely different area and the area that had previously improved will deteriorate again.

At the moment his levels of concentration are very good. He has been keeping himself very busy designing websites and writing his own blog. While he’s doing these things he’s fine, but unfortunately as soon as he stops he is back to pacing the floor and checking the window for people watching the house. I know the obvious answer is for him to keep busy, and he has been, but I’m just a little worried that he will wear himself out as he is having to keep his brain occupied from the moment he gets up to the moment he goes to bed.

We haven’t talked any more about his delusions, but the fact that he is pacing the floor and looking out of the window is a sign that they haven’t really settled down completely. They don’t appear to have worsened though, so I didn’t contact his psychiatrist about an increase in medication. One thing Mr Man and I have talked about is his anxiety, and this is something that I keep meaning to blog about, as his CPN (Community Psychiatric Nurse) seems to have great difficulty in understanding this problem.

Having suffered from anxiety in the past myself, I know too well that sometimes it is just a persistent feeling of overwhelming anxiety for no apparent reason, and sometimes it is more like an “attack” which is often accompanied by an irrational fear. I also know from experience that the “focus” of the anxiety is not usually the original source. For example, when I suffered from acute anxiety the focus was on spiders. I have always had a fear of spiders, as do many people, but at this particular time my anxiety had escalated to an unmanageable level which was affecting my ability to function on a day to day basis. I was too scared to open draws or cupboards, fearing that a spider would be inside, or even stand near a draw or cupboard. I couldn’t sit in the garden where I believed spiders to be everywhere, and I feared walking through the doorway of the house, convinced that a spider would drop on my head from its hiding place on the door frame. At this time I had had no recent experiences with spiders to aggravate this anxiety, but Mr Man had been admitted into hospital for the first time. Obviously my anxieties over Mr Mans admission were presenting themselves in a very different way.

For Mr Man, the recent “focus” of his anxiety is travelling by car. Each time we travel somewhere he is convinced that we are going to have an accident. This fear is compounded by the fact that the voices are constantly telling him that we will have an accident. Of course, this isn’t a completely irrational fear, as people have accidents on the road every day, but his anxiety levels are making it nearly impossible for us to travel by car.

The thing is there are different kinds of anxiety. Everyone suffers from anxiety as Mr Mans CPN Mark* is so fond of telling us. If a person were to address a large audience for the first time in their lives you would expect a certain level of anxiety; that would be perfectly normal, but when a person is suffering from anxiety for either no apparent reason, or in an area of life that had not previously caused them any anxiety, particularly when the fear is an irrational one, then there is obviously a deeper underlying problem.

Mark seems to find this very difficult to understand. Everything seems so straightforward to him. He is of the opinion that if Mr Man keeps travelling by car then his anxieties surrounding it will lessen in time. That’s a great theory, but if only it would work in practice. I’m sure that this exposure technique works for “normal” areas of anxiety, such as speaking to an audience for the first time, but as time goes by Mr Mans anxiety seems to increase with each journey, not decrease. We’re not talking about “normal” levels of anxiety here, and of course, if travelling isn’t the original source of the anxiety then exposure to that fear will be of little or no benefit.

Mark also seems to think that anxiety can be worked through with the use of logical arguments; we haven’t had an accident yet so there is no reason to think that we will. I can understand his reasoning behind this, but in my experience anxiety often defies logic. I knew a woman who suffered from anxiety, and again it presented itself in a completely unrelated area of life to the original source; she had a lot of financial difficulties but her anxiety was focused on the possibility of someone climbing in through her windows at night, and so during the heat of the summer months she kept them closed. Logically she knew that it was completely impossible for even a child to climb in through these windows as they were extremely narrow, but this argument did nothing to ease her anxiety.

The only useful piece of advice that Mark has given us is to use music as a distraction from the voices while travelling. This has had limited benefits, but still, it’s better than when we play no music at all.

Previously Mr Man has attended anxiety management classes, but he found that the classes themselves were causing him a great deal of anxiety! He still remembers the techniques that he was taught and he tries to put them into practice, but sadly this offers little or no relief for him.

As time goes by Mr Man is turning me into a nervous wreck as well! Out of the corner of my eye I can see him braking for me, and it’s not unusual for him to shout out “Look out! Look out! Look out!” while we’re driving along. He assures me that my driving is not the problem though! I only wish I knew what I could do to help. I’ve started to brake much earlier and to make sure that I have extra time for pulling out of a junction when I have him in the car with me, and apart from that it’s just the usual reassurances and loud music. I’m sure in time his problems in this particular area will improve though, and we will be faced with a completely different problem, as is so often the case.



* Name has been changed.

Blip

As previously mentioned Mr Man has had a change in medication over the past month. I was recently asked in the comments section how Mr Man was doing, and if there were any improvements in his symptoms since taking Abilify. At the time it was too early to tell especially as his symptoms are prone to slight fluctuations in severity anyway. Although he will openly tell me when the voices are worsening and causing him anxiety, he tends to keep his delusional thoughts to himself, unless a change in his behaviour causes me to probe deeper.

This was the case yesterday. We had had visitors in the day and it seemed to affect him quite strangely. I’m not sure how to explain it; sometimes I “sense” something but I can’t describe what it is. After our visitors had left he remained quite distracted throughout the day. He had this expression on his face, and I knew he was deep in thought, but when I asked him what he was thinking he just replied with “I don’t know”.

By the time we had gone to bed he seemed to be ready to open up. He told me that he felt that our visitors were spies. In fact he could only name a few people that he doesn’t feel that way about. He felt that he was being watched all of the time, and he said that the voices were telling him to get on with his “work”. Previously when he had skipped some medication I would find him sitting on the floor in front of the TV with a note pad and pen, taking down “codes” from the TV adverts. Now the voices are telling him to do this “work” again, and although so far he has managed to resist, he said that the voices are becoming very persistent and threatening. Of course, the voices telling him to do these things is one thing, but it's when he starts believing it that I start to worry, which he is. I said I would contact his psychiatrist on Monday to see if we can get his medication increased, but he refused saying that “She’s in on it”.

I’m hoping that this is just a “blip” caused by the disruption of medication levels during the change over, but obviously it is something that I am going to have to keep an eye on. He doesn’t seem to be preoccupied by these thoughts all of the time, as he was able to keep himself busy for some of the time yesterday, and we had some interesting discussions about music and such like. I’ll have to be very careful to make sure that he definitely swallows his medication though, as I know that once the delusions start that he is likely to stop taking them, believing that the meds are used to “control him”.


I know I said previously that I didn’t really want to discuss his delusions yet as I wanted to retell the series of events in order, but obviously that isn’t happening. I seem to be recovering now from my recent bout of exhaustion so hopefully I will be able to write about his first hospital admission soon.

All because the lady loves... flowers on her anniversary

Today is our anniversary. We’ve been married for 9 years. As I sit here typing this Mr Man is in town buying me a card and probably getting me a surprise bunch of flowers as well. I know it’s so hard for him to go into town, and so it means that much more to me. Usually, wild horses couldn’t drag him there, but just on this one day of the year he will make that special effort. Obviously he can’t cope with going alone, and last year his key worker Paul took him, but this year Paul is sick so my friend has taken him.

How can I not love a man who, despite his anxieties, voices, and paranoia, will go out to buy me flowers for the sake of romance? It’s the ultimate “because the lady loves Milk Tray”* moment.


*A British advert in the 1980’s for Cadbury’s Milk Tray (a box of chocolates), where a James Bond type character would risk life and limb to deliver a box of Milk Tray to the woman he loved, with a voice over at the end of the advert saying “All because the lady loves Milk Tray”.

Edit: Replace "bunch of flowers" with "large bouquet of flowers"!

Untitled

2004 and present day

Mr Man is feeling really anxious just lately. When he’s like that he tends to pace around the house constantly and get under my feet. In the early days I would stop him by giving him a big cuddle to calm his nerves, sitting him down, and encouraging him to express his thoughts and feelings. I had a deep desire to understand how he felt so that I would know how best to reassure him. These days I’m much less patient, which is good and bad for different reasons.

I suppose I still deal with it in a similar way, just a shorter version. I’ll give him a hug and ask him what’s wrong, and whereas in the past it took a lot of probing for him to open up, these days he’ll just tell me what’s on his mind more or less straight away. We used to spend a long time talking about how he felt; I suppose at that time there was a lot for me to learn with so much going on in his mind that I knew nothing about. These days I often know how he feels and what he’s thinking without him saying a word; just by the expression on his face. I’ve learnt over time that it doesn’t really do either of us any good to constantly talk about the negative emotions he feels. It was essential at the start – for him to be understood and for me to understand – but to cope with these feelings on along term basis requires more than just talk. Obviously communication about his symptoms and how he feels is still important, especially if there are changes, but the focus now is more on how to manage them.

He copes much better when his mind is occupied. Thankfully he has lots of hobbies, but he often needs encouragement to do them, and if the anxiety is very bad he may struggle to concentrate. Listening to music often helps to drown out the voices, which are usually the main cause of his anxiety, but music alone isn’t usually enough for him. I find myself becoming more and more bossy with questions such as “What are you going to do today to keep yourself occupied?” This afternoon he was looking particularly glum so in the end I just said “Come on, I’m taking you to the gym”. It sounds easy enough doesn’t it? But it’s taken a long time for us to get to this stage. He used to hide away for most of the day in bed, not wanting to be in sight of the “voices” who were constantly “watching him”, commenting on what he was doing and telling him what he should be doing. He would sleep his life away rather than face the fear of the horrors they would demand he carried out, or for fear of the consequences for not doing so. He was just so drowsy all the time as well from his medication, that when he was awake he couldn’t concentrate on anything to keep his mind off things. There was nothing on this earth that could have motivated him to get out of bed at that time. I know; I tried. Over the course of the day my heart would sink lower and lower as each attempt failed. I had such a mixture of emotions. I missed him so much, but why would I want to force him to face those awful fears by dragging him out of bed? I wanted to be with him, but I was finding it hard to cope with seeing him so depressed and anxious everyday. Once he was up it was impossible to motivate him to do anything. I was finding the challenge so disheartening, so draining; it was often easier to just leave him in bed. I felt like I was failing.

I became increasingly frustrated with the comments made by his psychiatrist during 2004, who we will call Dr Nancy. Mr Man had just come out of hospital after his third admission, and was now taking the “wonder drug” Clozapine. Dr Nancy insisted that I get Mr Man up each day, get him out of the house for a while, and keep him busy. Although I know now that this routine is essential in managing his symptoms, at that time it was impossible - impossible because his symptoms were not yet at a manageable level and impossible because he was too drugged to do anything. I felt that Dr Nancy was placing an unmanageable burden on my shoulders, one that should have been properly handled by someone with the appropriate training and who wasn’t emotionally involved. So many times I wanted to scream at him: “If it’s so bloomin’ easy you come and do it”.

Mr Man was also feeling under pressure to “perform” – that is, to make the improvement that Dr Nancy expected, and to be doing all the activities that he suggested. He felt that Dr Nancy blamed him for not making the speedy recovery he seemed to exact from him, although I didn’t know he felt that way at the time. The pressure to recover made it more and more difficult for Mr Man to be open about how he was really feeling when he saw Dr Nancy, such as if the voices had become worse. He started to hold back from telling him things, but Dr Nancy took a very dim view of me trying to prompt him or filling in the blanks for him. He thought I was being overly negative about how Mr Man was progressing, and overly motherly, perhaps hindering his recovery. This wasn’t the case, but it wasn’t the first time I had been accused of these traits (more about that another time) and I started to question my own sanity as everyone seemed to be happy with Mr Mans progress except me.

Then one day we sat in Dr Nancy’s office and I couldn’t believe what I was witnessing. This man who was usually too depressed to engage in conversation or any other activity was actively participating in conversation and appeared mentally alert as he answered Dr Nancy’s questions. I was shocked, angry, upset, and confused. I was experiencing such a mixture of thoughts and feelings; it’s difficult for me to put it into words. I was so confused, I actually wondered if it was all in my mind, and that he really hadn’t been as ill as I had imagined. I know that sounds crazy, but for years I had had mental health staff telling me that I was overreacting and now I was really starting to doubt myself. Part of me knew it had to be an act, but I didn’t understand why he was doing it. I was angry and upset because it was making me look stupid and overprotective. I was struggling to cope with his illness at home but he was acting like everything was fine. I was worried that he wouldn’t receive the medical help he needed and I knew no-one would take my concerns seriously and that I would have to continue struggling on my own without any help.

Once we had left he returned to his usual behaviour and I questioned him over what had just happened. That’s when he admitted that he felt under pressure to recover. He thought he would get into trouble for still being ill, as if he could somehow make himself well again if he just made enough effort. At this point we decided it would be better if he had a change in psychiatrist. He obviously expected too much from both of us and there was no point in seeing someone who Mr Man was afraid to be honest with, that obviously wouldn’t help him to receive the care he needed. We asked his CPN if he could see Dr Hilary, whose care he had been under whilst in hospital the last time. She is completely different to all the other psychiatrists Mr Man has seen. She allows him to make progress at his own pace, and is so understanding of how he feels; he finds it easy to be open with her about his symptoms. She seems to know exactly how to draw him out, and with 20 years experience she seems to have seen it all, heard it all, so nothing surprises her. She accepts everything he tells her, without ridiculing, disapproving, or trivialising what he has said. I know these are things that should be expected from a mental health professional, but sadly it’s rarely the case. Mr Man is thankfully still under Dr Hilary's care now, and is slowly making great progress.


I actually set out to blog about anxiety tonight, and the problem we have in getting Mr Mans' current CPN to understand what the term means. Maybe next time.

The unpleasant term

Thank you to John Robertson for pointing out this article to me, regarding the use of the term Schizophrenia. It appears that some people are finding this word offensive to their delicate little ears, and want the name of the illness changed.

I would understand it if they felt that the term was misleading, as its literal translation means “split mind” – as in split from reality, but of course some people wrongly think that people with Schizophrenia have a split personality.

However, their reason for wanting to change the name of the illness is that it “falsely groups a wide range of symptoms” and also they feel that “the label stigmatised people as being violent, dangerous and untreatable”.

Of course I’m not a professor, but I have a few comments that I would like to make about this myself:

1. There is a specific criteria of symptoms for a diagnosis of Schizophrenia; the “label” is not handed out indiscriminately so I fail to see how it “falsely groups a wide range of symptoms”.
   
2. The “label” in itself does not stigmatise people as being violent, dangerous, or untreatable, but the media do. It seems obvious to me that people need to be educated about mental illnesses, rather than remove terms from our vocabulary that scare people.
   
3. It is a diagnosis, not a “label”.
   

Richard Bentall, who is a professor of experimental clinical psychology, has suggested that the label “has encouraged the widespread use of "drastic biomedical interventions" as the first-line of treatment, rather than psychological help” as if this was a bad thing. These “biomedical interventions” have been shown to work, and enable a great number of those “labelled” with Schizophrenia to live a normal life. I don’t think you will get many offers from people whose lives have changed drastically for the better through use of medication, for any of your experimental psychology. Psychological disorders which require therapy are hardly the same as psychiatric illnesses which need medication. Studies have shown that patients with Schizophrenia have chemical, and often physical, differences in the brain.

So, if the name is to change, what do we change it to? Some have suggested “integrated disorder” as used in Japan, although personally I feel that this "label" is very vague and will falsely group a wide range of symptoms together, which is the very thing these professors are trying to avoid.

I think this comment from Robin Murray, professor of psychiatry at the Institute of Psychiatry, London, just about sums up the real reason for this whole debate:

“My personal preference would be to replace the unpleasant term schizophrenia with dopamine dysregulation disorder”.

Italics my own.

Why are people so afraid?

I just spotted this news item on the BBC news website. Obviously people are scared because they continually hear in the news how mental health patients run around with axes chopping off other peoples heads. Once again the stupidity of the general public leaves me speechless.

Also on the same day I have found this report which clearly shows that the main problem of mental health patients escaping is that they are a danger to themselves. Of course the answer to this is not a higher fence, but staff who are actually willing to do their jobs and supervise the patients.