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At last the update - Carers UK Forum

At last the update

Share information, support and advice on all aspects of caring.
Hi all,
Well, I've just about managed to find the time for this update.
It all started last November when my wife's psychosis got really bad and she thought that I had planted cameras and microphones in the house everywhere she went around the house she was checking the ceiling in the corners etc, then she kept thinking that I as going to take her away from the house (which I had no attention of doing) shekeot saying "okay I'm ready now you can take me away " and "will you stop playing these horrible games on me ".
Eventually I called the doctor and told him the situation, then she took the phone off of me and tried to explain the situation not making any sense at all. Once I got the phone off of her I spoke to the doctor and he told me that he thought it was a panic attack, I listened in amazement and couldn't believe what he was saying, I said to him that it wasn't a panic attack but a psychotic attack, he said that he would pass the information on to her consultant.
Anyway the day past and she started to settle down and came back to normal she went to bed as normal.
The following morning she woke up as normal and kept questioning me that she wouldn't be taken away, she worked herself up into such a state about it that it set off another episode of psychosis and followed the same routine as the day before but this time she was shouting and screaming about being taken away and that I was playing games again.
It carried on for most of the day when it got to the stage where I could take no more, I called the consultants secretary and told her the situation, she passed me onto the consultant and my wife once again took the phone from me and started to utter gibberish to the consultant, when I got the phone back he suggested to give her something to calm he down but that was impossible as I couldn't get near her.
Early evening came and things were still no better, I once again phoned the consultants secretary but was unable to get hold of him so she passed me to the Duty team who said that he was on his way over to see her with a member of the Crisis Team.
They were a bit unsure whether she needed to be an inpatient but that was soon sealed when my wife kept interupring them and I was told to make my own way to the hospital, after putting together a few clothes in a bag we set off, my wife kept asking me if I was going to take her to somewhere secret. As we neared the hospital I made a wrong turn and she thought that I was playing games with her.
As we walked into the hospital they were waiting for us, I put her bag of clothes on the reception desk where they were checked, my wife kept saying that I had hidden a knife in the bag, I then placed the tablet box on the counter and she was saying that I had spiked them all and asked to be kept away from me.
The nurse asked me to take a pen and paper and to sit in the waiting room to write down all of the medication. My wife kept shouting "its not medication that he's writing down, it's a conspiracy". She was in the hospital for four weeks, over the period of time I went and visited her, she was supposed to have Voltrol gel patches put on her legs and Buprenorphine morphine patches for her back (she has got ostiarthritis in the kneecaps, sciatic nerve, two slip discs and arthritis in the tailbone), I kept having to ask the nurses to put on the patches, but never did, I even suggested bringing in a wheel chair, but said that they would deal with it. They never did and as a result she had to walk everywhere (now out of hospital she can hardly walk because the pain is so bad).
On the third week she seemed to.improve and they prescribed her. Haloperidol and Depixol injection (antipsychotic medication), she started to get really agitated, it got so bad that she discharged herself, the crisis team came around for three follow up meetings with her new medication for three weeks, a few days after I noticed that her hands were twitching slightly, then they got worse until her hands, arms and legs were shaking all over the place, I called the crisis team and they told me to call an ambulance, whilst talking to the operator from the emergency services, there was a massive bang coming down the stairs, my wife had thrown herself from the top of the stairs to the bottom (we have a wooden semi spiral staircase) she was just lying there, but soon came around and said that she just wanted to kill herself (a side effect of Haloperidol), the ambulance eventually arrived and took her to hospital, after checking everything with the usual tests heart, blood pressure etc. They called the psychiatric liaison officer (she was really agitated and couldn't sit still), they called us into a room and new exactly what the problem was, he said to stop the Haloperidol straight away (caused a lot of withdrawal symptoms) and to carry on with the depixol. By now she new what she was doing and they sent us home. I told her consultant and he said to stop the depixol aswell and needs a two week wash out period (so now she was off two medications both causing withdrawal symptoms, mainly agitation and insomnia).
Over the next couple of weeks rge agitation got really bad and had to take her out in the car for drives in the car a lot, aswell as the insomnia it meant driving day and night. I tried to explain this to the consultant that I was wearing myself out, but didn't seem really care.
Then my wife's phobias started to come on and get worse.
I was given some Clonazepam to help with her phobias which do help but make her really tired. The phobias got worse and I attempt to contact the consultant, got through to his secretary and explained the situation, couldn't get hold of him so she passed me onto duty, a CPN answered the phone she had a rough idea about it but couldn't understand why he passed it onto her (this was last thing on a Friday evening), she said she would try and contact a doctor who could help and would phone me back. Sure enough in about 20 minutes the phone rang and is was another consultant, he asked me what my wife used to take for medication before her admission, I had to think really fast and thought of Quetiapine (a newer type antipsychotic and knew it helped last time) I told him and without delay wrote me out a prescription with instructions.
I had to race over to the hospital through the rush hour and made it within 5 minutes of closing, I picked up the meds and started straight away, I am now upto present day the consultant is still bloody useless, so I'm trying to change him. I've got to speak to the manager of the center BUT sods law he's on leave until the 28th February, my wife's CPN has been off sick for 3 weeks, the place is a nightmare.
My wife keeps asking me how long the tablets take to work in desperation or what if these don't work what then I have no idea and feel really sorry for her. I'm trying to be as supportive as possible to help but can only do so much.
We have also for a new GP who is also bloody useless so she's going,the problem is that half of the doctors and nurses know absolutely nothing about mental health.
I am really hoping now that things puck up soon once I get another GP and consultant . The CPN had better get herself sorted out or guess what she'll be going too.
good grief Mark Image You 2 have been going through the mill!
I cannot express just how appalled I was to read your post. You are clearly the most caring husband in the world, dealing with an impossible situation. It's unbelievable that in this day and age, with all the "Care in the Community" ideas etc. that this is being left to drag on and on. Are you getting any support for you, as opposed to your wife, any direct payments, anything? As far as your wife's treatment is concerned, all I can suggest is that you ring the Chief Executive's office for the hospital and say that you want to make an "immediate urgent formal complaint". These can often be the "magic" words. Like you must, I'm fed up with a long term battle, however one which pales into insignificance in comparison to yours, but I'm finally reaching resolution point. Take care, I'm so concerned about the effect all this must be having on your health.
Mark what a truly terrible time you and your wife have been having. So little support plus medics without the necessary training and skills.

I hope you quickly get a new consultant and GP and the CPN bucks up her ideas.

Mark I read your post and am appalled at the lack of support and lack of help that you've received. You have coped in the most difficult of circumstances and hope that you get more co-operative and successful medical support/attention than you've received thus far.
"LIKE" to all the above. Horrific situation, I'm amazed you are still in there, do keep complaining and advocating, its all you can do.
Seconded, Scally..............I seem to be following you round the forum!

You are truly amazing Mark.

Take care