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".