Saturday, December 23, 2006

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.

Sunday, December 10, 2006

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 - - 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

Wednesday, December 06, 2006

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.

Wednesday, November 22, 2006

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”.

Sunday, November 19, 2006

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.

Friday, November 17, 2006


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.

Saturday, November 04, 2006


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.

Friday, October 27, 2006

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"!

Tuesday, October 17, 2006


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.

Monday, October 09, 2006

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.

Tuesday, October 03, 2006

What's Wrong?

October 1999 - November 2001

The last time we went on holiday together was in October 1999, we were celebrating our 2nd anniversary, and we had such a lovely time I didn’t want to come home. I didn’t know then that once we had returned home Mr Mans health would rapidly deteriorate and he would never be the same again. He started suffering from the Epstein Barr virus, but due to pressures at work, and through fear of losing his job he forced himself to go into work each day. At that time he worked for Royal Mail, but he worked in the office dealing with holidays, overtime, figures, that sort of thing. He loved his job but he was under a lot of pressure as no one else in the office knew how to do it, and as if his health problems didn’t make things difficult enough for him, his manager would continually be adding to his already heavy work load. He worked six days a week and would often bring work home with him to do on a Sunday. He would come home from work and go straight to bed, too exhausted to eat, and not get up again until it was time to go back to work. I sometimes would get up at 2am to cook him a meal, just so that I knew he had had at least one meal that day. We hardly ever saw each other and it was a very lonely time full of worry about his deteriorating health.

He started suffering from persistent headaches and his GP prescribed him anti-depressants, which at the time I didn’t understand. His medication caused all kinds of side effects, including night terrors. He would call out fearfully in his sleep and then wake, sobbing. I felt angry at the GP for adding more problems to how Mr Man was already feeling, but I realise now that he was trying to lower his levels of anxiety and thus treat the head aches.

All of these problems continued and gradually worsened over the period of a year, and I would often beg him to take sick leave from work. By October/November 2000 he realised that he just couldn’t carry on anymore. He had had a week off work for holiday (after having to train someone to cover for him), and had started to feel a little better, but with just one day back at work he felt as if he had never had any time off. He finally decided to take some sick leave.

Mr Man is a very proud man. I don’t mean in an arrogant way, but it’s very important to him to be able to work, feel useful, and provide. He found it extremely difficult to stop working, and even more difficult to claim benefits. In the end his own GP had to convince him to claim, telling him that he was entitled to it as he was ill through no fault of his own, and had worked hard and paid tax for 13 years.

By September 2001 he was medically retired from his job, and by this time he had been referred to the Psychiatric Day Hospital and was under a psychiatric consultant for his depression. He was so ill, and sleeping so much still, that our 4th anniversary in the October seemed to just come and go without us hardly noticing, which was very unusual for us as it’s usually a very special occasion for both of us. Days later he was in hospital with Pneumonia and Septicaemia. Neither of us realised at the time just how serious his condition was; it was only a few weeks later when Mr Man was seeing his psychiatrist again, and I was explaining how anxious he had been about getting back to work, when she said to him “Do you realise how ill you’ve been? You could have died. It’s going to take a while to recover from that”. We were both a little shocked by this.

It was about that time (November 2001) when Mr Man was prescribed Lithium. He began sleeping even more – 18-20 hours a day, and wetting the bed every day due to this medication. Although I had missed him so much and was so worried about him while he had been working during his sickness, this was far worse than anything we had faced so far. He sunk into a depression so low that he became someone I didn’t recognise anymore. It was a very scary time with his psychiatrist mentioning hospital admissions and ECT, but nothing could have prepared me for the fear I felt when I realised just how suicidal he had become. Through all of this no one really knew what was wrong with him, it was just an accumulation of several things - Epstein Barr, headaches, recovering from Pneumonia and Septicaemia, and now severe depression.

Next: "One Flesh" covering November 2001 - May 2002


Friday was a very stressful day really. Mr Man had an appointment with his psychiatrist in the morning, who thankfully is a very caring and experienced doctor. This hasn’t always been the case though with the various consultants that he has seen over the years, and unfortunately I think the bad experiences we have had, particularly when he was an in-patient, has left him in such a state that he always suffers high levels of anxiety whenever he has to see a mental health “professional”.

Presently the medication he has been taking is Clozapine and Risperdal, and as previously mentioned he still struggles a lot with the negative symptoms of his Schizophrenia. Also, although the positive symptoms have been reduced dramatically, they are still there. For this reason his psychiatrist, who we will call Dr Hilary, has decided to wean Mr Man off the Risperdal (Risperidone) and introduce Abilify (Aripiprazole). Apparently there have been good results with patients taking Abilify with Clozapine, and Mr Man has spoken to patients himself who have had good results with Abilify alone. That being said, we are obviously still worried about not only the transitional period between the medications, but also whether this other drug will really work for him. All we can do is wait and see.

As the day went on, anxiety levels were increasing for both of us, as he was booked to go into his respite home that night for a couple of nights. I was going away on Saturday, leaving early in the morning and staying over for one night, so I needed him to be able to stay somewhere where he would be safe. Neither of us really like him having to go into respite, but we use it out of necessity, and neither of us have really recovered from him having stayed at home on his own in August when there were no beds. He obviously can’t cope at home on his own, and he wouldn’t cope with the activities that I get involved in while I’m away, so the only thing we can do is book him in somewhere where he will be supervised so that he will come to no harm. He hates being away from home though, so this causes him a lot of anxiety, and it’s really his anxiety that causes me to feel anxious, as I feel so bad for “making” him go there. I dread the moment when I actually have to drop him off and say goodbye; it’s like leaving him at the hospital all over again, and I always cry once I’ve left.

When I dropped Mr Man off at about 10pm the staff were in a “change over” meeting, where one lot of staff finish a shift and another lot start. We were asked to wait in the lounge until they had finished, and were offered tea and coffee which I thought was very nice. However, when the meeting had finished we were confronted by a staff member who was a right grouchy old bag, who complained about my being there, as visitors don't usually stay that late. I pointed out to her that we had been asked to wait there, to which she replied “I know” so I don’t really understand what her problem was. She then said we were expected at 7pm. I have no idea why as we didn’t specify what time we would be arriving, and no one has ever suggested that it should be by a certain time. I had explained to the other member of staff though, that with all good intentions unfortunately “life” happens and that was the soonest we could get there. Being greeted with that didn’t make me feel any better about leaving Mr Man there and it didn’t help to settle his anxiety either. When I spoke to him later on the phone though, he said that she was ok with him in the end. Unfortunately past experiences make me ready for a fight at the first hint of unpleasantness.

After assessing the level of his illness, they will only take him for three nights in a row maximum, although he usually only stays for one or two nights, and all of their “guests” are only entitled to stay three times a year. I wish it was more often, say six times a year, as I’m sure that if he stayed there more often he would become more relaxed about going. It doesn’t really give me many opportunities to get away either, and the last time I had a real holiday (which was only four days anyway) was in 2003 while Mr Man was in hospital.

Unfortunately though even this limited service could soon come to an end, as closure of this facility is on the cards due to NHS cut backs. What we will do then I have no idea, and to be honest I’ve tried not to think about it, although I know I should. I think I may have missed the deadline for writing a letter of appeal, although I shall do it anyway. It’s just sometimes so difficult to put into words how I feel about issues like this, so I suppose that’s why I have put it off for so long.

It's not that I need a break* from Mr Man - why would I? We love each other and we love being together. But I do need a break from the house and the usual routine of things, I think most people do, but I can't go on a holiday with Mr Man like most "normal" couples would. I miss that so much.

*I’ve mentioned Jim before, Mr Mans key worker at the respite home, and how stupid he is. Recently he said to Mr Man that he should think about going in for respite more often, to give me “a break”, and not just when I’m going away.

  1. He can’t go in more often; he only gets three respite breaks a year.
  2. I don’t need “a break” from my own husband, and thanks to that careless comment I had to spend a great deal of time reassuring Mr Man of that fact.
  3. If we wasted respite breaks with me staying at home, we wouldn’t have anywhere for him to go to be safe when I go away.

Where do they find these people?

Thursday, September 28, 2006

Mad world

Tonight I read this post by Tom Reynolds where he asks the question: where does religion end and madness begin? This sparked a funny conversation between Mr Man and me. He told me that the first time he was admitted into hospital there was a patient who was very religious. He would carry his bible around with him, walk into a room full of people and announce “Right, I’m going to teach you all something now”. He would then proceed to read a portion of the bible out loud and then, looking confused, he would stop and say “What’s that all about then? That doesn’t make any sense to me at all”.

Moving off the subject of religion and talking about madness, I was curious to know if Mr Man thought he was mad, as obviously others regard mental health patients as mad, and sometimes the patients themselves do. He replied with “Yeah, I suppose” and then laughing he continued “I’d forgotten that I used to believe that flies had cameras on them, and when you mentioned it [the other week] I thought “Blimey, I was off my trolley!”” Still laughing he added “When I was in hospital I used to spend all my time saying to people “I’m not mad you know” but really I was, so I suppose I must be a bit”. I’m glad he can see the funny side of it now.

I never thought he was mad though, I just saw him as ill. To me it was no different to having any other kind of illness, he just needed treatment. We joke about other patients now, and say “He was off his rocker” but deep down I don’t really believe that any of them were “mad”. I’ll tell you what mad is: mad is hearing one psychiatric nurse talking to another about the fact that her 8 year old daughters’ hamster had died, and how upset she was, and that she had to buy her a new pet; and then nodding towards the patients on the ward and saying “And these lot think they’ve got problems” as if having to buy a new hamster for a grieving 8 year old somehow compares.

There were many funny characters that we remember with fondness now, like the man who use to stride up and down the corridor calling out “Kirk to Enterprise” and babbling on about Saddam Hussein. He seemed cheerful enough to me, but Mr Man said he used to get a little aggressive at times. There was also a man who used to sit there having a good old chat and a laugh with himself for hours, but if you walked passed and said “Hello” he would stop, return the greeting, and then carry on from where he left off.

For some reason a lot of the patients were quite drawn to Mr Man. There was one girl who thought that he was her twin, and the staff were always telling her to leave him alone. I remember another lady who was obviously very ill, but she was lovely, and she liked talking to Mr Man as well. I don’t know what her diagnosis was but she was very quiet and found it difficult to communicate with people. If you spoke to her she had this “searching” look in her eye, almost as if she thought she had answered you, although she hadn’t, and was waiting for your reply. If she managed to speak it sort of came out in a burst. She would shuffle along the corridor, hunched over and tongue hanging out, and a cup of tea in her hand tilted to one side. I think a lot of the other patients felt protective of her, including Mr Man, and Darren who I mentioned previously would buy her sweets. Mr Man would spend a lot of time in a “quiet room” on his own, or with me when I visited, and she would come in and sit with him, complain for a little while in her own disjointed kind of way, and then leave.

There were these two women in there as well who were joined at the hip. It was so funny to watch them because they were like an old married couple, going everywhere together and yet bickering constantly. I don’t even know how they understood each other because one had a very strong Asian accent, and the other a very strong African accent. One time they actually fell out, and wouldn’t speak to each other. I was visiting Mr Man and we sat together in a quiet room when one of them walked in, sat down, and started telling Mr Man all about this falling out they had had. Mr Man listened very patiently, although like me he couldn’t understand a word she was saying (and when people are excited or upset their accent tends to get even stronger), and seemed to shake his head and tut in all the right places. Happy that she had been heard, she got up and left the room. Two minutes later the other one walked in and did exactly the same thing! All I could do was sit there watching, completely baffled as to why everyone felt the need to come to Mr Man about their problems, when he was a patient too.

The African lady was actually a patient on a different psychiatric ward previously, where Mr Man was as well. The patients had a payphone on the ward that they could use, and relatives could call on that line as well. When the phone rang this lady would always try to answer the phone before anyone else could get to it and then wouldn’t hand it over. She would just talk down the phone in her own language, ignoring whatever the caller was saying to her, until finally whoever had called would get fed up and hang up. It happened to me quite a few times, and when I was visiting I would often hear the phone ring and then people shout out “Abigail* leave the phone alone! It’s not for you!” and she would call back saying “It’s for me!”

Now if you’ve ever wondered about ECT** and it’s affects on people, Barry* is one man who received this treatment. Normally he would sit slumped in his chair, and not really talk very much to people at all apart from the occasional complaint of “There’s nothing in me”; and except for the occasional flashing at female staff members he wouldn’t really do much else. He didn’t look after himself at all, and smelt really badly. But once he had had his ECT he was a different man. After his treatment you couldn’t shut him up! He would talk continuously to whoever would listen, repeating the same stories over and over again, and barely pausing for breath. He would look after himself a lot better too.

They’re the patients that really stood out to me, but there were many others who just kind of blended in and were hardly noticed, although Mr Man would obviously have known them better and probably remembers things about them. I know there was a man who sat in the corridor playing his guitar all the time, and another man who used to actually sleep outside. He was a friendly chap who always used to say hello and ask how I was. There was another man who became friendly with Mr Man for a while, and he seemed “normal” enough. He would talk about how these different people were after him, and I actually believed him until he started saying that one of the other patients was really a spy. That’s when I realised that he was suffering from paranoia.

I tried not to get too involved with the other patients to be honest; I felt I had enough on my plate to deal with as it was. But apart from being unwell in one way or another, they all seemed quite a friendly bunch really.

*Not the persons’ real name.

**ECT – Electroconvulsive therapy is sometimes used in the treatment of very severe depression. The patient is given anaesthetic and muscle relaxant to prevent injury and then a small electrical current is passed through the brain to induce a seizure. Previously these seizures were induced by administering insulin. It is thought to alter the chemical balance in the brain, and as in the case of Barry, sometimes the results are dramatic.

Friday, September 22, 2006

Appealing qualities

Mr Man has been really worried about his friend recently. Although I obviously don’t enjoy seeing him worry, it’s really nice to see that he’s thinking about someone else.

It almost seems too long ago to remember, but even before the onset* of his symptoms I don’t recall him ever worrying about another person. Although he was quite sociable and friendly towards others, he always maintained a certain amount of emotional detachment; he just didn’t seem to want to get involved in other peoples lives. He never really had any close friends; he didn’t seem to need them. Once he was home he was happy to just shut the door on the world. Of course when he became ill he started to become more and more withdrawn and he found it increasingly difficult to mix with other people. He became self absorbed; and that’s not meant as an insult to him at all, it’s just simply the nature of his illness. His thoughts and delusions are all consuming, and the hallucinations make him tire of company.

It’s been a slow process, but he’s really starting to see outside his own world now. It’s really hard to explain what it feels like when you see that for the first time. He’s always been very protective of me, and a lot of his delusions revolved around him believing that I would come to some sort of harm; but to see him care about someone else, and in a rational way, is quite touching. In a lot of ways it’s like getting to know a side of him that I’ve not known before - a very appealing side.

The first time I saw it was probably with my friend about 18 months ago. After her husband had cheated on her Mr Man became very protective of her. I really haven’t ever seen him show this much care for anyone before, other than myself of course. Putting his own feelings aside, he would invite her in, make her a cup of tea, and then ask her if she would like him to leave us to talk in private. That sounds like such a small thing doesn’t it? I wish I could put into words what this really means. Back then he wouldn’t invite anyone into our home; he would just open the door and look at the person, waiting for an explanation for their being there, and he's still like this now sometimes. Once I had peered over his shoulder and invited them in, maybe he would disappear upstairs without a word, not wanting to have to “put up with” anyone. But when my friend came round, for those few minutes her feelings were more important to him than his own - and it showed. Maybe it wasn’t so much his actions, as his demeanour. He was happy to put her first.

Over the months since then he has shown his concern for her in many ways. She is the one person that is always welcome in our home, and who he is always happy to go to visit with me. If we’re going out for a meal he’s always happy for her to come along too, and is often the one to suggest it. He agreed to buy her a necklace that I chose, he’s given her a phone, and if she ever needs financial help his answer is always yes before I’ve even finished asking him. I can’t stress how different this is to how he normally is with other people. He’s not usually generous towards people (besides me) with his affections or his money! In fact he doesn't even like helping out family members, and if I ever say I'd like to buy one of them a gift, his usual response is "What for?" It doesn't worry me at all that he is like this towards her; like I said I find it very touching, and it shows a very appealing side of his personality. He heard the way she sobbed when she had just found out about her husbands unfaithfulness, and it has obviously brought out a very caring and protective side of him.

Now he’s worrying about his friend, who we’ll call Darren. Darren was a patient in the psychiatric ward at the same time as Mr Man, the first time he was admitted. Mr Man recognised him from years ago when they used to work for the same company, which gave them common ground at the outset. While other patients came and went, Darren and Mr Man both stayed in hospital for nearly 6 months, even being discharged on the same day. They became good friends, although not what I would call close friends. But 4 years later they still speak regularly via the internet. What makes their friendship work is that neither expects anything from the other, recognising that they both have limitations when it comes to forming friendships. Neither becomes offended if the other doesn’t feel like talking, as they both have times like this; neither feels embarrassed to say or to hear “I don’t feel too good”; and neither feels the need to constantly focus on their symptoms as the topic of conversation – it’s understood, and it’s unimportant. Basically I suppose they just make each other feel “normal” for want of a better expression.

Darren was due to come round for a meal a couple of weeks ago, for the first time in about a year. When he didn’t show, Mr Man tried ringing him but there was no answer. He was becoming increasingly worried about him, but I tried to reassure him that Darren was perhaps having a bad day, and maybe didn’t feel up to making contact to let us know that he couldn’t make it. Eventually he received a message from him via the internet, and as I suspected, he wasn't feeling well. Since then Mr Man still hasn’t heard from Darren though, and he’s been very worried about him. He’s tried leaving messages online for him, ringing and texting him, but he’s had no reply. Usually in a situation like this his response would be “He doesn’t like me, I won’t bother him anymore”, but instead he has been able to recognise that Darren’s needs may be greater than his own, and was concerned enough about him to contact the Community Mental Health Team to ask them to check on him.

To me this seems like a huge step forward. It means that he's starting to look outward, instead of inward, and this is affecting his relationships with people in a positive way. It may only be two people, but it's a start.

Incidentally, Darren has come to no harm; his mother is keeping an eye on him.

*Perhaps the correct term would be “worsening” of his symptoms, rather than the “onset” of his symptoms, as he recalls hearing voices since his teens. Maybe the fact that he was already experiencing symptoms is the reason for him being quite insular. But I use the term “onset”, as this is the time that his mental illness first became apparent to me and to others.

The order of these posts may seem confusing to some, as I had started “at the beginning” from when Mr Man was first admitted, and now have jumped back to the present day. I will return to 2002 eventually, and continue from where I left off, but this will take some time as obviously it is very upsetting and I need to feel strong enough emotionally to “go back there”.

Saturday, September 16, 2006

Back to the present day

Mr Man (my husband) isn’t very well at the moment. I mentioned previously that high levels of stress can aggravate his symptoms, and that is the problem at the moment.

I went into hospital at the beginning of August to have my gall bladder removed, so apart from the usual anxieties that you might expect like “What if something goes wrong?”, he also had to stay at home on his own as there were no beds free at the respite home that he would usually go to in a situation like that. He hadn't had a night on his own since becoming ill. Thankfully these days they like to send you home very quickly after an operation, so I was only away from home for two nights. He struggled on the second night, and he definitely wouldn’t have coped for a third.

I have several issues with how things were dealt with during this time, none of which are worth complaining about officially as I have learnt from past experience that no one will take any notice and it will only result in me feeling unheard and frustrated, and probably in need of counselling again.

The first thing is that it was clearly stated in my hospital notes that I am a primary carer and that I would need 12 weeks notice before my operation, to make sure that my husband had a bed in a respite home. I actually received less than 3 weeks notice. I could have cancelled and waited for a different admission date but Mr Man felt it was better to just get it out of the way as I have been in quite a lot of pain with the gall stones. Anyway, chances are I would only have received 3 weeks notice for the second date as well.

The second problem was the unhelpfulness of the staff at the respite home. As soon as I received the hospital letter I called the respite home straight away to book Mr Man in, but of course there were no beds. That’s nobodies fault I suppose (except the hospital maybe), but what annoyed me was the stupid conversation that I had with Mr Mans “key worker” from the respite home. We’ll call him Jim.

After explaining the reasons why I needed the specific dates I had asked for, and after Jim explaining that there were no beds available on those dates, he then proceeded to say to me (and you’re gonna love this): “If you could put it off till the weekend starting the 11th, we have beds free then”. I was in complete disbelief. Does this man think that I can phone the hospital and book the dates that are convenient for me to go in for an operation? Apart from the obvious bed shortage, does he think that the surgeon will come in on his day off just to do one operation? I tried to tell him that the 11th was no good, as my admission date was the 7th, but he just continued to give me a list of all the dates that they had beds free, well into September. It’s rather worrying that people like this are responsible for my husbands care.

After that pointless and frustrating conversation I called our local community mental health team to speak to Mr Mans actual key worker. We’ll call him Paul. Paul tried to find a space in another home, but unfortunately everywhere was booked up. There were "crisis" beds in the respite homes, but apparently Mr Man didn't qualify as this wasn't a crisis situation. I’m not sure what exactly qualifies as a crisis situation. Jim said that the beds are there as an alternative to prevent patients from having to go into hospital, but previously when Mr Man needed to be admitted into hospital and I asked if he could go into respite instead we were told that the staff at these homes are not qualified to care for a patient who needs to be hospitalised. So as usual, I suspect we were being told whatever fitted in with their own agenda at the time.

Anyway, Paul said he would be in touch to make arrangements for home visits while I was away. I waited, and waited. A week had gone by – nothing. I don’t usually have any complaints about Paul, he really is a top bloke; down to earth and very caring. But on this occasion I felt like everything had been left up in the air with no definite arrangements for Mr Mans care, which was my third grievance. It was getting nearer to my hospital admission date and I was getting anxious.

To be honest I really wasn’t worried about my operation at all. I was worried about the recovery time, not knowing how Mr Man and I would cope with day to day things while I was recuperating, and knowing that usually unless I cook, he won’t eat. I was also extremely anxious about Mr Man being at home on his own over night, knowing that quite often he will call me on my mobile when I’m out because his symptoms have become worse after only being at home on his own for a couple of hours, and sometimes he doesn’t want me to go out at all. At least when I’m out he knows he can phone me and I’ll come home. How was he going to cope with knowing that no matter how poorly he felt I wasn’t going to come home for at least a couple of days? What if the voices got really bad? What if they told him to harm himself? I was worried about whether he was going to drink enough as well, as the temperature was 30°C and I often had to remind him to drink. And finally I was worried that he would forget to take his medication; and that on my return I would be trying to cope with him in a worse state than usual, whilst recovering from an operation. But I wasn’t worried about the operation itself.

Eventually, with only a week left to go before my admission date, and having still not heard from Paul, I went to the community mental health centre to ask to speak to him, but ended up having to see Mr Mans CPN (Community Psychiatric Nurse) who we will call Mark.

I hadn’t gone to Mark previously because, as Mr Man quite rightly says: “As long as I haven’t chopped my own head off, he thinks everything is fine”. And that is exactly how he is. Mr Man used to be seen by a different CPN who recently had a job change, so now he is seen by Mark, the eternal optimist. My meeting with him went exactly how I had predicted – that he wouldn’t really take my concerns seriously until I had burst into tears and given him graphic details of what I was afraid of and cited past experiences as a point of reference. Just once I would like to be able to simply say to someone “He won’t cope” and for that person to actually trust my judgement and act on it without questioning it. After all, I do actually live with the man. I know what he can and can’t cope with. Grievance number four.

I had already arranged for my brother to bring Mr Man to the hospital to see me each afternoon, as at this point I wasn’t sure how long I would be in for. Also, my friend and her Mum were going to take it in turns to pick him up in the evening and cook a meal for him. After telling Mark what arrangements were already in place we talked about how to make sure that my other concerns were taken care of, such as getting my friend to remind Mr Man to take his medication when she dropped him home in the evening. Mark also arranged for someone from the community mental health team to pop in and see him each morning for 20 minutes or so, to check that he was alright. Mark assured me that if they detected that he wasn’t coping, they would arrange for him to be taken into a respite home, into one of the crisis beds.

Although that relieved my anxiety at the time, I don’t think much to their detection skills now. As I mentioned, Mr Man seemed to cope with the first night, but by the second night the voices had become very bad and they were telling him to cut himself. He finds it very hard to resist doing what they say when they become this persistent, as he often feels that if he just does what they say they might finally shut up and leave him alone. He was even considering what he was going to use to cut himself with. He said he managed to resist because he kept thinking about how upset I would be. The internal conflict must have been unbearable. He didn’t tell the staff how he was feeling when they came to see him. Let’s just say that some people are less approachable than others, and those ones tend to be less discerning as well. I know in the end it didn’t matter that they hadn’t picked up on how he was feeling the following morning, because I came home that day anyway, but what if I hadn’t?

Of course, I’m home now, but nearly 6 weeks later Mr Man is still suffering from the effects of that added stress. The voices are still bad, which is causing him a great deal of anxiety, and for a while he was really struggling with some of his previous delusions, and still is slightly. I’d like to mention what they are, but they won’t make much sense until I have explained the background, and I’d like to tell the story in order. I’ve had to ban him from reading this blog in future because it has been bringing back too many memories for him and it’s too distressing. I definitely don’t want him to read about his own delusions, as that could easily trigger them again, or reinforce the ones he is still struggling with. He often seems to be walking a fine line between the delusions and reality; I expect that’s because he struggles to believe that the voices are not real, so consequently he struggles to believe that what they say isn’t real either, and what they say feeds the delusions. The delusions and hallucinations are closely linked in this way.

I just feel like once again we have been left to cope with the situation on our own. We were more or less told "There are no beds so you'll just have to cope". The most input we had from the community mental health team was 20 minutes of their time for two mornings, from people who were so out of touch with Mr Mans problems that we might just as well have got a stranger to walk in off the street to ask Mr Man how he was feeling.

Mark keeps talking about pushing the boundaries, so that in time Mr Man can cope with more and more. Trust me, I push his boundaries on a regular basis, I know when something is going to push him too far. I push his boundaries every time I expect him to come out with me and mix with other people, I push his boundaries every time I invite people round, and I push his boundaries every time I leave him on his own for a few hours. Leaving him on his own for two nights was pushing it too far.

When Mark comes round Mr Man won’t even tell him how he feels anymore, because he’s tired of not being taken seriously. I don't know how long it will take for this current aggravation of his symptoms to settle down, but in the mean time I've had to have my anti-depressants increased due to the added anxiety prior to my admission, and Mr Man is having to take more Diazepam. But he "hasn’t chopped his own head off, so everything is fine".

Friday, September 08, 2006

One flesh

Continued from "What's Wrong?"
November 2001 - May 2002

Can illness really make you stop loving a person? I have seen a few marriages break up over the years due to mental illness. Obviously I fully understand that it can be very scary to watch the person you love turn into someone you don’t even know. But surely you must realise that somewhere deep inside the person you love is still there? I understand how circumstances become very different, and they’re not the circumstances you chose, but isn’t every marriage like that to a greater or lesser degree? And I understand how unhappiness with your circumstances can make you want to change them - end them - but can you really stop loving the person you married, just because they’re not well anymore? Can you really see yourself being happy without that person?

Shockingly I had people suggest that I should get on with my own life while my husband was in hospital. People have seemed surprised when they realised that I visited him every day. I had one person tell me that they thought I liked being married to a sick person that I needed to look after. I had a nurse tell me that I would end up resenting my husband for being ill. And I even had a doctor tell me that if I wanted a family I would have to leave my husband. These attitudes are merely symptoms of a world where unconditional love is idealised – as long as you can have everything your own way.

I’m not pretending that I haven’t struggled with coming to terms with my husbands’ illness. Sometimes grieving the loss of how things once were has taken me to a very dark place. Worse than that was watching the man I love suffer in the most indescribable way. I confess, I wanted to end the pain – for him, for me – but I have never wanted to leave him. Why would I? Why would I want to tear myself away from someone I love so much, and allow him to suffer alone? It was hard enough to say goodbye each night, and leave him behind at the hospital. I’d walk out of the door and look back through the little window, and see him sitting there, lonely, and scared. I wanted to protect him – from his own fears and from himself – but I couldn’t do it alone anymore. He had become so suicidal that he needed 24 hour care, and I couldn’t give it.

I remember the night before he first went into hospital so clearly – or rather, the emotions I was feeling. I had done everything I could during the previous 6 months or so to reassure him of my love for him. He was in such a deep depression, and at this point no one knew about the voices. He had changed so much. His smiley eyes had gone. His loving, romantic nature, his sense of humour. My husband had gone. He was just a man, emotionless, expressionless. His medication made him sleep for about 18 – 20 hours a night/day, and he would wet the bed up to 4 times during those hours, because of his medication. I would get him up, wash him down, change the bedding including the duvet cover, and let him get back into bed. It was so degrading for him, a grown man who couldn’t control his bladder. He would apologise for being such a burden, and I would try to reassure him that he wasn’t. I’d cook him a meal and get him up for the evening. I would run him a bath, wash his hair and body, and he would just sit there, motionless. He couldn’t understand why I still loved him and was willing to care for him. I wanted to show him that doing all of these things for someone you love isn’t a burden, and I needed him to understand that my motive was love not duty, so I would do my best to stay cheerful while doing these things and then after bathing him, drying him down, and helping him to dress, I would sit on the floor in front of him and massage his feet as well. He’d look at me confused, and ask “Why are you doing this?” and I’d smile and say “Because I love you”. There were tears, but I had plenty of time for those while he was asleep. It was a very lonely time.

Actually, I'm not sure which was worse, the loneliness from being without him while he slept for so long, or the loneliness from being with a man that didn't resemble my husband at all. No one fully knew or understood what I was going through. It was really a time of grieving, I missed him so much, and at the same time I was having to care for this unresponsive stranger. I knew somewhere deep inside the man I loved was still there, and I never gave up hope that if I kept showing love he would come back. Looking back I know that if I hadn't continually "gone that extra mile" to prove my love for him he would have ended his life.

"Because I Love You" by Philippa King

Many times his Psychiatrist suggested that he go into hospital, but he didn’t want to, and I didn’t want to cause him to doubt my love by making him. His Psychiatrist would ask how I was coping, but she always asked me in front of him, and I had tried so hard to prevent him from feeling like a burden, I didn’t want to admit that I couldn’t cope. I sensed that he often felt suicidal. This was confirmed when his Psychiatrist asked him directly if he ever felt suicidal, and he admitted that he had. She asked him what ways he had considered and he told her, and she also asked if he had made previous attempts and he had. I learnt that he had saved his medication and taken a large dose in one go, with alcohol, and then gone to bed, and I hadn't even noticed. Although inwardly shocked I tried to just put my feelings to one side and show understanding and support. I didn’t want him to feel that he couldn’t turn to me through fear of how I would react. I started watching him more closely, and supervising his medication. Once these suicidal tendencies were out in the open I often asked him how he was feeling, sometimes asking direct questions in the way his Psychiatrist had. He began to trust me more and became more open. One night we were having an honest chat about how he had been feeling and he confided that he had been thinking about waiting until I was asleep before trying to kill himself again. I couldn’t hold my emotions in any longer. I held onto him and sobbed. How could I possibly protect him? I knew then that it was time for him to be admitted, and after seeing me so distraught, he agreed. I hardly slept that night, every sound, every movement my husband made, woke me. We made an emergency appointment the next day to see his Psychiatrist and she had him admitted into the psychiatric ward the same day.

Totally crushed I could only hope that they would find a medication that worked for him soon. I was now taking anti-depressants myself, and was suffering from anxiety. I thought I had reached my limit of what I could cope with, but there was worse to come.

Next: "First Hospital Admission"

Thursday, September 07, 2006


In my last post I mentioned the film A Beautiful Mind. I first watched this film during my husbands first stay in hospital. The film played a critical role in helping me to understand my husbands illness, and how to react to it, at a time when I was completely uninformed by hospital staff. I also found comfort in the role of Alicia, John Nash’s wife. Here was a woman who had experienced all the same emotions that I was now going through. I admired her strength and courage, her loyalty and devotion to her husband. In a world where so many marriages fail when troublesome times come along, here was a woman who I felt I could relate to, because despite the devastating effects of mental illness on her marriage, like me she seemed determined to loyally help her husband through to the other side, and turn something destructive into something that would strengthen the bond between them. Like Brian Glazer, the producer of the movie, I felt that “John Nash’s victory wasn’t only that he beat Schizophrenia or that he won the Nobel prize. The victory in the movie and in his life is how the love between him and Alicia survived and grew and evolved.”

However, today I discovered, whilst doing some back up research for my last entry, that she did in fact divorce her husband a few years after the onset of his symptoms. She redeems herself slightly in my estimation by the fact that some years later she allowed him to be her “boarder” and thus prevented him from either becoming homeless or institutionalized. If she thought she could free herself from the pressures of being a carer she was sadly mistaken, as her son also developed Schizophrenia. Of course, it’s not my place to judge the decision of another, as each circumstance is different, but I suppose I kind of looked up to this character believing that she had stayed by his side and remained his constant companion well into old age. Some would argue that she did, and indeed the author of the book which the film is based on, credits Alicia with helping John through the most difficult stage of his life. I have difficulty in understanding how she did this, if they both lived in the same house as if two unrelated people. They remarried again nearly 40 years later in 2001, after John had received his Nobel prize and regained his status as a genius, and after the subsidence of his symptoms. Call me cynical, but whatever happened to “I force myself to see the man I married”? – a line from the film which I have clung to.

Whatever the reality of the situation, Alicia, the character in the film, is a beautiful one. I aspire to be as patient and loving as she is towards her husband. When John Nash accepted his Nobel prize, he didn’t make a speech about his wife either, but it makes a beautiful ending.

Tuesday, September 05, 2006

Through the delusional and back

People with Schizophrenia suffer from hallucinations and delusions. These are the "positive" symptoms previously mentioned. Hallucinations are when a person hears, sees, tastes, smells, or feels something that isn't there, and they believe it's real to the point that they cannot tell the difference between the hallucination and reality. The film A Beautiful Mind does a fantastic job of demonstrating this, because after watching half of the film you then realize that none of it was real - or was it? For a while you still feel confused, and this is exactly how a person with Schizophrenia can feel when they're half way between being ill and getting better. It's a very confusing and traumatic time, not knowing who or what to believe. John Nash, played by Russell Crowe in the film, reaches a massive turning point in the management of his illness, when he realizes something that helps him distinguish between reality and fantasy.* Unfortunately, not every person with Schizophrenia will find a "touchstone" to help them gain insight in this way, and so unless management is possible through medication, it can be an ongoing problem to help them to realise that their hallucinations are not real, as with Mr Man as I will explain later.

Mr Mans hallucinations are auditory - he hears voices. I think maybe this is where some people get the belief that people with Schizophrenia have a split personality. Maybe they think that it is the "other half" of their personality that they hear "in their head"? I don't know. I can tell you that this is not true though. People with Schizophrenia do not have a split personality. As for hearing voices "in their head" - remember that the hallucinations are so real that they cannot be distinguished from reality. If Mr Man closed his eyes and a stranger (a voice that he doesn't recognise) spoke to him, he wouldn't be able to tell the difference between the stranger speaking and the "voices", because the voices seem so real that they sound like they are in the room with him. Studies actually show that when people suffer from auditory hallucinations the same part of the brain is stimulated as when a person speaks to them.**

Many people with Schizophrenia suffer from auditory hallucinations. Sometimes these can be command hallucinations - when the voices tell the sufferer what to do, or commentary - when the voices do a running commentary on what the person is doing, or persecutory - when the voices threaten the person. Obviously these can cause a lot of anxiety for the sufferer, and along with delusions can make a person behave completely out of character. Delusions are beliefs that are not real, such as believing that one is being persecuted. John Nash, as portrayed in the film, believed that he was a secret agent of some kind, although in reality he suffered other delusions too. Another person I know believed she was Satan, and my husband believed that he had been selected to work for a "company".

Maybe behaving out of character is another reason why people wrongly believe that people with Schizophrenia have a split personality. Contrary to popular belief though, the sufferer cannot "snap out of it" and become "themselves" again, or switch between the two. The cause of their strange behaviour, as already mentioned, is due to hallucinations or delusions or a combination of the two, often referred to as Psychosis, which does not stop suddenly. Rather, this is a condition that requires medication and patience, and can take a long time to recover from. Actually some people with Schizophrenia may never recover. Statistics vary, depending on the source, but I have read that after 10 years 25% of all Schizophrenia sufferers will recover completely, either with or without treatment, and live a normal life. 25% will gain much relief from their symptoms through medication, and live relatively independant lives, and another 25% will gain a measure of relief from their symptoms but will have difficulty in living a normal life. The remaining 25% will remain hospitalised, or commit suicide. One statistic that every source seems to agree on is that one in every hundred people has Schizophrenia - maybe more common than you thought.

Mr Man probably fits into the third category - he has gained a measure of relief from his medication in that he is not usually delusional anymore, but he still lives with the hallucinations, although they are not as bad as they once were, and struggles with the negative symptoms as mentioned previously. Another important milestone is that he now has insight into his illness - that is, he knows that he is ill and that he needs medication. When people with Schizophrenia are really ill, they don't know it. Typically they have a "lack of insight" into their illness. If you ever hear someone say "I think I might be Schizophrenic" it's very unlikely that they are. You can't think that you might be delusional, or think that you might be hallucinating. By their very nature, if you can come to the conclusion on your own that these are symptoms of an illness and not reality, then you can't be experiencing them. Even now, although Mr Man is not usually delusional, he still struggles to believe that the voices are not real.

I say he's not usually delusional, but high levels of stress can aggravate symptoms. It can be quite difficult to strike a balance when encouraging a person with Schizophrenia to push the boundaries, to try to overcome their anxieties, while at the same time being careful not to push them beyond what they can cope with and thus making their symptoms worse, or even causing a relapse. Another cause of relapse is if the person stops taking their medication, which is very common in people with Schizophrenia for various reasons. Probably the most common reason is that sufferers believe that they don't need their medication anymore once they are feeling better again, and of course as previously discussed they're not aware when their symptoms start returning. Another reason is the awful and often embarrassing side effects that they have to endure, including drooling, and twitching. In the past Mr Man has stopped taking his medication because the voices "told him to", and as I said he still hears them and struggles to believe that they're not real.

Another misconception is that people with Schizophrenia are violent. This is due largely to the fact that whenever a person with Schizophrenia does act violently in some way it is publicised in the news. Of course people without Schizophrenia commit violent acts every day. People with Schizophrenia are no more likely to harm others than anyone else. In fact they're more likely to harm themselves, with statistics showing that one in ten sufferers commit suicide.

*For the sake of helping the viewer to understand the nature of hallucinations and delusions John Nash is portrayed as a person who suffers from both auditory and visual hallucinations, which is not the case. According to Wikipedia his hallucinations were exclusively auditory, and John Nash hints towards this himself in an interview at Bearing this in mind, I am unsure just what exactly his "touchstone" was, or if indeed there really was one. As mentioned previously, some people with Schizophrenia will recover completely in time anyway.

**Some people hear voices in their head, but that is a different problem with other causes which I know little or nothing about. These are called Pseudo hallucinations. This is when a person experiences something that is not there, but they can distinguish between that and reality. As an example, Mr Man used to see faces that appeared like holograms. Although he was convinced that they were there, he knew that these were not real people, hence it was not a true hallucination. I don't know what connection there is between this kind of hallucination and Schizophrenia, if any.

Friday, September 01, 2006

Day to day

Today I thought I would post a little bit about what it's like living with a person suffering from Schizophrenia. I'm not talking about when Mr Man is psychotic and everything is a bit scary, I'll talk about that another time, along with those symptoms and how they affect him. I'm talking about living with the illness on a long term basis from day to day, because there is no doubt about it, no matter how "stable" his symptoms are, life is different.

I often bump into friends or acquaintances in town and they will ask me how Mr Man is. I always find it difficult to know what to say; I'm never really sure what it is that they actually want to know unless they ask specific questions like: "Is he at home now, or still in hospital?", "Does he get out much?", "Is he well enough to be left alone now?" But to ask "How is he?" - it's not usually as simple as "He's fine" or "He's not good", it's more complicated than that. I usually just say "Well you know, same as usual". I then often get that sympathetic look from people as they say to me "It must be very hard for you". This is another thing that I find very difficult to respond to. I usually just say something like "Yeah, sometimes" or just "Well, it's harder for him". But I go away wondering to myself just what it is exactly that they think I have to endure.

Our marriage has changed a lot since the worsening of Mr Mans symptoms, and his subsequent diagnosis. (Yes, believe it or not, I had no idea that he was suffering from Schizophrenia when I married him and he wasn't diagnosed until we had been married for 5 years, although he had been poorly for longer than that. More about that another time.) But although there has been a lot of changes, they are not all for the worse. The bond we have is much stronger now, and due to some of the experiences that we have shared (which I will go into in more detail another time) we have a trust that is unbreakable. He knows that I am fiercely loyal and protective of him, and I know that his love for me is so strong that he would give up his life for me. But yes, I suppose it is hard sometimes, and there has been a need for quite a few adjustments.

I don't suppose that the problems we face on a day to day basis are the ones that people imagine when they say "It must be hard for you". I suspect that maybe they think he suffers mood swings? Maybe even becoming violent? Maybe they think that he is extremely delusional all of the time, and has no ability to connect with the real world at all? I have no idea. But in reality the things we cope with day to day are more to do with the "negative" symptoms* of his illness, such as being withdrawn and not wanting to mix with people, and not taking care of himself physically. These problems can be at different degrees, but at the very worst he won't get out of bed at all, and I struggle to get him to eat or drink. Usually he is far more functional than that, and to anyone that doesn't know him well, he probably looks like there isn't anything wrong with him at all, apart from being a little antisocial.

The usual problems that people don't see are things like:

  • Not changing his clothes or underwear - recently he started changing his T-shirt each day without prompting, because he wanted to wear his football shirts for the World Cup, but that was short lived and usually he won't change his clothes or underwear unless I tell him to, or even get them out for him.
  • Not washing or bathing - usually he doesn't even brush his teeth unless I remind him, and he won't have a bath unless I run it for him and tell him to get in it. Gentle reminders don't work. Thankfully he's not really a smelly person.
  • Not eating or drinking properly - he doesn't refuse to eat these days if food is prepared for him, but left to his own devices he doesn't even think about eating, and even if he does realise that he needs to eat, he doesn't really know what to do about it. I've tried giving him options as to what he can eat while I'm out, saying "If you get hungry you could eat this or that" but I am realising that options don't work. He is more likely to eat while I'm out if we decide on what he will have if he gets hungry before I leave, and even more likely to eat if I say "If you get hungry and you don't eat I'll be upset". Drinking is not so bad; he'll make himself the occasional cup of tea, but I was a little worried when we had all that hot weather. I was aware that I was constantly drinking, and he wasn't. I had to keep reminding him to have a drink.

These problems can become draining when they're on a day to day basis. Sometimes it's like having a child that never learns how to do things for himself. There are other challenges as well, such as having to cancel arrangements with other people, either because he doesn't want to come with me and have to mix with people or because he doesn't want to be left alone, because he suffers from a lot of anxiety. I found this very hard to start with because I am a very sociable person. It can lead to a lot of loneliness because unfortunately people don't always understand, so after a while they stop inviting you. I'm getting used to being at home more now though, and having other hobbies (such as blogging) helps. If I go out I always have my mobile phone on me so that he can contact me whenever he needs me, and I sometimes have to cut plans short if this happens. Also it's sometimes difficult to have visitors, although he is very understanding that I need to see other people, and so if it's too much for him he'll just disappear upstairs. (I really think I'm very lucky in lots of ways, because it would be so easy for him to say he can't cope and that's that)

Other frustrating things are his lack of memory, and the fact that he doesn't like change. This is one thing that has become an issue today, because after 9 years of staring at the same dreary net curtains I wanted to change them, but of course Mr Grumpy is not happy. (Mr Grumpy is his favourite Mr Man, and I call him this affectionately, not as an insult) In reality I wanted to change round the whole living room, decorate it and everything, but just having to live with different nets is really his limit (blinds were definitely a no no). On the bright side, his memory is so poor that after a couple of days he probably won't even remember that I've changed them! (When I was trying to convince him that new curtains would be nice, I drew his attention to curtains in another room which I had changed a couple of months ago, saying "You like these ones though don't you?" His reply was "Have you changed them then?") At least he has a sense of humour about his memory loss - more about that another time.

So, when people say "It must be very hard for you" yes, I suppose it is, but in a lot of ways it could be far worse. I could be married to a man with a roving eye, a man that shows me little or no respect, or someone who is utterly selfish. Instead I'm married to a man who is willing to die for me, a man who appreciates me, and a man who despite his limitations still tries to put me first. Of course he is delusional sometimes, and his hallucinations are always there, and these present completely different problems. I will talk about this another time.

*Negative symptoms are aspects of a persons personality that are kind of "missing" in people with Schizophrenia, such as lack of motivation to do anything or to care for themselves, and an inability or unwillingness to mix with other people.

"I have lost the colours of my character"

"The Negatives" by Philippa King

Patient UK says:

Negative symptoms can make some people neglect themselves. They may not care to do anything and appear to be wrapped up in their own thoughts. For carers, the negative symptoms are often the most difficult to deal with. Persistent negative symptoms tend to be the main cause of long-term disability.

There are also "positive" symptoms, and these are things that are kind of "extra" that other people wouldn't suffer from, such as delusions and hallucinations. I will talk about these more in depth next time.