Tuesday, October 17, 2006

Untitled

2004 and present day

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

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

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

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

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

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

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


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

9 comments:

Rhea said...

Hmm, anxiety is not a nice thing. I'm sure it's not at the same level as your husband but I have anxiety episodes, often related to my IBS. I feel jittery, can't concentrate and all the rest of it. Sometimes it just for a few minutes but occassionally it can last a few hours. Instead of beating myself up because I can't 'snap out of it', I've come to realise that curling up with a cup of tea and a good book or DVD is the best course of action for me.
It's mind boggling that there are people such as Dr Nancy.

Mr Mans Wife said...

Thank you for your comments Rhea.

Despite what I have said about him, Dr Nancy was actually quite a nice doctor in comparison to some others we have seen; he just seemed to expect everything to work like it does in the text books, and of course life isn’t as easy as that. We’ve met far worse, and I hope to write about these soon.

Anonymous said...

I came across your blogg when I was searching, in desperation, for something to give me the strength to carry on. The first thing that attracted me to your blogg is the fact that you are a spouse as I am. My husband has suffered from schizophrenia since he was 17, he's now 30. He had a terrible experience of the mental health regime and spent the first ten years of his illness in and out of psychiatric hospital. Something he hated and rebelled against, which obviously made treatment harder. He has only ever been into hospital once voluntarily. Every other time, he has been taken there kicking and screaming, sectioned and drugged. I don't blame the hospital for this - I blame the fact that my husband cannot accept that what he is experiencing is an illness. We met in 2003 and fell in love. The kind of love that I have never experienced before - real love. We were friends to start with and we spent hours and hours talking about what he had been through. It seemed I was the only person he had ever confided in. His delusions include the belief that he has lived many times before. Every memory is the same until the age of 17 and then it differs. He has told me of horrific torture and violent deaths that he believes he has experienced and, when asked if I believe him, I have answered that I am not in a position to doubt what he is saying. I've never tried to convince him that he is ill. Many of his family members had tried to do that before and he cut them out of his life. That situation remains. I am his only support. He puts an act on for his CPN and psychiatrist and doesn't have anything to do with his family who are happy that they no longer have to take responsibility for him. (To be fair, his sister lives abroad and his mum is an elderly lady with health problems). We have been married for three years but already we live apart. During the first year of our marriage he became violent and headbutted me, giving me a nosebleed. I couldn't tolerate any sort of violence and have a daughter (from a previous relationship) to consider. His social worker put him in a B&B and left him there. He had been told, by his social worker and CPN that he was on the housing list for a council house but I discovered, after a few weeks that they had not filled in an application form for him and he wasn't on any housing list. If I hadn't found him a flat, he would still be in B&B accomodation. He now lives 34 miles away from me and we keep in touch on the internet and by phone and we visit each other. It is a very difficult way to live. I am constantly exhausted, physically and emotionally and financially. He is useless with money and I am constantly 'bailing him out' by buying him food. He spends most of his benefits on cigarettes. He is negative most of the time and our phone conversations leave me feeling depressed and stressed out. I suffer from a painful joint condition which limits what I do physically but, like his own illness, he refuses to recognise that there is anything wrong with me. I have no friends or family to support me with him, except my eleven year old daughter. She is marvellous but I fear this is ruining her life. I wish I could leave him. It breaks my heart to admit that but its true. The worst part about admitting that is that I know I can't leave him. If I do he will end up back in hospital, on the streets or dead. I can't imagine living with that knowledge. I am at my wits end. I am on anti-depressants but they are not helping. I tried to join a support group but felt that all the advice I was offered meant taking the blame for everything. I don't have the energy for a social life, even if I had friends to have one with, because of my health and the fact that I now have two homes to keep clean. My husband has come off his medication now and things are getting worse. His paranoia is terrible and because I am the only person around, he takes it all out on me. He is coming to stay tonight, because he can't cope on his own at the moment, and I have been in tears for most of the day because I am dreading him coming. I can't sleep with him any more either. This means either rejecting him or 'pretending' and I hate doing either. I feel like I'm responsible for a moody teenager who has tantrums when he can't get his own way. I know its because he is ill but telling myself that just isn't enough to keep me going any more. I still love him very much and I think I am still helping him. He has no idea that I feel like this. I think all this is destroying me more than him.

Mr Mans Wife said...

Anonymous, thank you so much for posting, I know emotionally that must have been very hard for you to do. I’m sorry I didn’t reply earlier.

I can relate to some of what you say, although obviously every case is unique. Feeling responsible for a moody teenager sounds very familiar. Thankfully Mr Man has never been violent towards me, and I can’t begin to imagine what that is like to deal with, and of course you have the added responsibility of caring for your daughter which I don’t have. I really feel for you in your situation.

I’m presuming that you just wanted to post to let off a bit of steam, but as I’m so bossy these days I hope you don’t mind me offering a bit of advice?

You mention that your own anti-depressants are not helping. I would go back to your GP and talk to him/her about that. It’s important that you look after yourself if you are going to be any help to your husband, although obviously the tablets won’t make all of these problems go away. Did your husband have the same GP as you? If so it might be a good idea to book a double appointment and maybe talk to him/her about what is happening. I know there are supposed to be confidentiality laws, but depending on the doctor, some are happy to at least listen to your concerns about a patient, especially when the patient is so out of touch with reality and unable to inform the doctor themselves. In any case, your husbands’ illness is having a direct effect on your own health, so the doctor should hear you out.

It seems to me that one of the biggest problems is the fact that you are the only one who actually knows how ill your husband is, which is why you’re not getting any support. Depending on the psychiatrist, he/she might also be willing to hear your concerns. If his CPN is rubbish you are within your rights to ask for a different one, although I’m not sure if that request will have to come from your husband. The same goes for his psychiatrist, although you don’t mention if he/she is any good or not. Ask someone in your local community mental health team if they can put you in touch with a local advocacy service. They should be able to tell you what your rights are as a carer if you struggle to get someone to listen to your concerns about your husband. I tried for weeks to get a second opinion for Mr Man while he was in hospital, and once someone from the advocacy service got involved Mr Man got his second opinion the same day, which included a change in medication. Don’t be afraid that they might force him into hospital and that you will be responsible for that; in my experience they try not to hospitalise patients unless they are a danger to themselves or to others.

I wonder if you would both benefit from having your husband living nearer to you, and maybe in the kind of home that Mr Man stays in when I go away. I’m not sure what they actually call it; where Mr Man stays they provide short breaks for respite, but also there are long term “guests” that stay there. Maybe they call it “supported accommodation”? Basically the guests are free to come and go as they please and have their own rooms, it’s not like hospital at all, but medication is controlled by staff. This obviously reduces the risk of their guests not taking needed medication. When Mr Man stays there they actually supervise him while he takes his meds, rather than just handing the tablets to him. I don’t know if they do this with everyone, but when Mr Man first stayed I made sure that they knew that he had a tendency to skip medication. Also if they need to talk someone is there to offer support.

Anonymous, I really hope this helps. If you want to ask anything or just let off steam again feel free to post here, or you can email me by clicking “Contact me” at the side of the page. I wish you both all the best.

Mattmoo said...

Hey Mr Man's Wife,
I have been subscribed to this blog for a little while and have finally caught up and read all your posts.
In one of your posts you mention the public's lack of awareness of mental health issues and i totally agree, having read this blog it has opened my eyes to a few things probably the most obvious being more aware of what a "Skitzo" is or isn't as the media is so flippant with how they describe mental health patients.

My gf's best friend's mum (wow thats longwinded) is a "skitzo" and often you hear her speaking to the voices that she hears. She seem's to deal with it ok, although my gf has explained to me that her friend's mum often tells her daughter to go away and that she doesn't want to see her agaig and from your blog i can understand why my gf's friend still continues to go visit as its obviously not her mums fault.

I am most impressed by your commitment to mr man as a lot of people would have "got out" while they could especially in todays society, but it seems when you took your vows you really meant them. Thanks for showing me that there is still people that genuinly mean "through sicknes and health"

Take care and i hope i have not said anything unintentionally offensive, i hope you take my comments as i meant them which is positive.
Thanks
mattmoo

Mr Mans Wife said...

No offence taken Mattmoo, and thank you for your comments. I’m glad that what I have written has proved informative. I still have so much to write! I hope I can get back to it soon, so watch this space…

The situation must be so hard for your girl friends friend. It must break her heart every time she hears her mother say that. I’m learning that there are so many strong and amazing people in this world.

Anonymous said...

Thank you so much! I've never had a positive response when I've let off steam about my husband. People usually look sympathetic or advise me to give up on him. I am not at all offended by your advice. I'm veryn grateful that you have taken the time to respond. I'm going to look at the links you advised after I've finished this.
Amazingly, I've just had a fairly good weekend with my husband. I was very tired and moody and, as usual, he thought it was all his fault but he couldn't see what he was doing wrong. This made him angry, as usual. This time, however, it didn't develop into an argument as often happens when I'm tired and stressed, nor did I patiently placate him. This time I said, in the nicest possible way, that it wasn't all about him, it was about other things that are affecting me. Amazingly I caught him at the right time for rational conversation and he listened. Maybe letting off steam helped me to try a different approach. I am so grateful to have somewhere to let off steam. I hope Mr Man is feeling good at the moment and happy anniversary to you both x

Mr Mans Wife said...

Anonymous, I’m so glad that my comments were useful. I know exactly what you’re saying when you say that people usually respond negatively and tell you to give up on your husband, as I have had the same experience. You obviously love your husband very much though, and I admire you for your efforts in trying to help him; I know it’s not easy.

I’m really glad that you had a good weekend with your husband. For me it’s times like those that make me look at Mr Man and think back to when people told me I should get on with my own life, and I think about what I would be missing out on now if I had listened to them. Your difficulties will only make your marriage stronger in the long run though, especially when your husband is thinking more clearly, he will look back and be grateful that you stood by him.

I also have the same problem with Mr Man thinking my bad moods are always his fault! And in frustration I have snapped: “It’s not always about you, y’know!” He tends to get anxious and clingy though rather than angry or argumentative. I’m glad your different approach worked. I suppose that’s what it’s all about; trying different approaches and finding out what works for your own situation.

Thank you for your anniversary wishes, and thank you for posting again; you sound so much happier and positive. I presume your husband has gone back home again now?

Colleen said...

Please make some more posts. This blog has helped me more than you know. Blessings!