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.

More NHS mental health cuts

In my experience, mental health services are already stretched to the limit and are barely adequate. I just noticed this article on the BBC news website.