Some Updates

After looking back through my posts I realise I haven't provided an update since July! Where does all the time go?

Back in July I had written that after nearly five years of taking Clozaril, Mr Man had stopped taking this medication suddenly and without warning, because he had had enough of the side effects. Once I realised what had happened he needed to have his Abilify increased and was also prescribed Quetiapine.

He remained on Quetiapine for about six weeks, until he finally decided he'd had enough of those side effects too. At least he made his intentions known this time, and actually, I thought it was good to see that he had a new found confidence and was taking control of how he wanted to be treated. His refusal to take these medications was in no way fuelled by any delusions, which is what distinguished these events from previous ones. He was able to reason logically and although recognising that he needed medication, he didn't want to take these particular ones.

He continued to do really well on Abilify alone, and the change in him was amazing. For all those years he had taken Clozaril, and we believed this was the best medication for him, and yet we didn't realise just how ill it was making him. Once he stopped taking the Clozaril the voices worsened slightly, but he felt - and still does - that the benefits far outweighed the slight worsening of symptoms. I will write more about this in depth next time, as I feel that people greatly underestimate just what mental health patients have to go through as regards these side effects, and then criticise them for ceasing medication.

Due to the worsening of the voices it was decided that now would be a good time to begin CBT, specifically to help Mr Man to cope with them. I think this was a good time for Mr Man, because although the voices had worsened, his insight was still good and he was thinking much clearer. I'm not sure if this would have benefited him when he was delusional as the focus is very much on questioning the voices and answering back.

He was still uncomfortable with the idea of having to see a psychologist, which of course would have been another new person involved in his care, so his Occupational Therapist, Sandra, has taken on the task. I must say, although we were unsure of her at the start, she has been very supportive of Mr Man over the past six months. Mr Man has felt able to open up to her and feels that she really understands - so rare, yet so important. She has also looked into things for him that he is interested in doing which he would never have been able to cope with before, such as taking exams for example.

So, that is the update so far. Although we have to continue to maintain a balance of what Mr Man can cope with, he is doing much better than previously, especially as he is more mentally alert and able to occupy himself. He even coped with going to a gathering of my family over the holidays, which he was actually looking forward to! I can't even remember how many years it has been since that has happened! Eight maybe? He was a little worried that the kids would be shy of him but they played with him as easily as if they had seen him every week.

So things are definitely looking up. And I have even begun watering my plants again, which apparently is a sign that my depression is lifting!

I will post more soon on side effects and other reasons why people stop taking their medications, and the huge changes in Mr Man since he stopped taking Clozaril.

Updates

Some of this post has been deleted

Some time during the winter months Mr Man’s CPN, Mark, had a job change, so now Mr Man has a new Care Co-ordinator; an Occupational Therapist who we will call Sandy.

Being an Occupation Therapist, she wanted to do something practical to help Mr Man with his anxiety. Since he has already been on every anxiety management course imaginable with little or no success, it was decided that she would go for a walk with Mr Man every two weeks to gradually build up his exposure, and to talk him through how he was feeling during the walk. This seemed like a reasonable plan, and she turned up the following week without an appointment as planned; prior notice would have given Mr Man time to worry about it. That was 3 months ago. This could have been a great opportunity for her to establish a relationship with Mr Man, if she had followed through, but since then she has only come to see Mr Man once, with a trainee in tow.

I think the plan was supposed to be that I was to carry on what she had started, as after the first walk she said “Maybe Mrs Man could go out for a walk with you next week?” and since then there has been no mention of her taking another walk with him. This irritates me because on one hand they are very fond of telling me to step back and that Mr Man has to learn not to be so dependant on me alone, and yet on the other hand they expect me to be the one to support him in all of their wonderful plans for him; not to mention the fact that I don’t always have the physical or emotional energy to undertake these endeavours due to my own health problems.

How do I stop the darkness from rolling in, for Mr Man or myself?

"The Darkness Rolling In" by Philippa King

Mr Man would like to start running regularly, to try to lose some of his medication weight, but this is going to be difficult to put into practice. Obviously he doesn’t feel able to run alone, and I really don’t have the health to support him in that way. It would be nice if someone from the Community Mental Health Team could take half an hour out of their day to run with him, but these people don’t want to give you the practical help that you actually need; they prefer to hold “Well Being” classes to just tell you what you should and shouldn’t be doing – if you can overcome your anxiety to get there in the first place of course. I wonder if this is partly due to wanting to maintain a certain amount of professionalism and emotional detachment, or whether they just don’t care enough to do anything even remotely outside their job description.

More recently Mr Man has been experiencing some fluctuations in his symptoms. We expect this from time to time, but when the symptoms are particularly bad there is usually a trigger, such as a stressful situation. No such situation springs to mind, but the voices have been telling Mr Man to cut himself again. More about that in my next post.

“Care” in the Community

I’m aware that Mental Health workers sometimes read this blog, and some have previously commented that it helps them to see things from a different perspective. So this is a message to all those who provide “Care in the Community”.

Don’t get shirty when a “service user” who can’t even remember to change his underpants doesn’t return your calls. And if he has a spouse who usually takes care of these things for him, take a minute to think about why she might be letting those things slip at the moment.

Sometimes there are more important issues in life than your appointment schedule running at 100% efficiency.


Edit: After making such a fuss last week, she failed to turn up for a scheduled appointment with Mr Man today, and she didn't even call to cancel. Maybe life has taught her a lesson in "more important issues"?

Finally

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

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

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

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

Maybe one day Mark will be too. Finally.



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

Anxiety

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


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

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

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

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

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

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

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

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

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

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

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



* Name has been changed.

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".