I'm putting the following in a separate post, as its a long winded, gettting it off my chest, self indulgant, trying to get get it straight in my head type post, that eveyone must feel free to ignore!
I had a phone call from one of the nurses at the home yesterday, after I finished work, and ended up having a long discussion with a male nurse that (somehow) I haven't encountered in person yet, though he has been there since January apparently. They had phoned OH in the morning, though he missed the call and hadn't realised. At the point when they phoned OH, it seems Mil was in such a state it was touch and go about having her admitted to a psychiatric ward at the hospital. By the time they got hold of me (neither OH nor I can have our phones on in work, in fact OH is not even allowed to take his phone into work with him!) she had calmed, but concern for her is high at the home. This nurse informed me that a new consultant (yes - again) has taken over Mil's care, and that he had managed to contact her and ask her to please come and see Mil urgently, a few days ago. The new consultant turned up and the nurse told me he was very impressed that she spent over an hour with Mil, then more time again going through Mils notes, medication and talking with the nursing staff at the home.
The nurse told me that the old consultant had started to say that he felt Mil's presentation was now so bad that he thought that there would be no option but to remove Mil to a secure unit in a psychiatric facility. However, this nurse, and it seems the other staff at the CH in general felt that this would have a hugely detrimental effect on Mil - the nurse actually said that she is 'distressed enough now, a unit like that would just make it so much worse for her, it would be like hell for her'.
He then went on to talk about the writhing, twitching, spasms and Mil throwing back her head and yelling - all things that I have told you guys that I've seen a lot of on recent visits. Trying to cut a long story short (the phone call lasted for nearly 40 minutes!) he felt that this quite possibly is all down to medication induced psychosis - and the new consultant agrees, very strongly. I'm still trying at this point to get straight in my own head all the info he gave me, but basically he explained the previous combinations of anti-psychotic medication have impacted on all her medications, and produced a thing he referred to as 'something or other' psychosis (it began with a T, I think, but for the life of me I can't remember the actual word he used). Anyway, its typified by the sort of behaviour and symptoms that Mil is displaying , though he told me he had mainly seen this in long term psychiatric patients who had been over medicated, not dementia patients. It's something to do with not only the issues caused by the cocktail of anti-psychotic drugs prescribed by all the different consultants, but also the impact of those meds when combined with medication for other physical illnesses. The spasms, the going rigid and throwing back her head, the increased tremors in her hands, the writhing in her seat, the harsh yelling, the loss of speech at times, the periods of her frantically banging and screaming at doors and windows (which have got much, much worse and far more frequent over the last 3 months), the gouging and scratching at her own arms, the pulling at her own hair, the increase in these periods of extreme agitation, the increase in physical violence and even the almost 'compulsive' trying to throw herself to the floor from her seat. He told me that if he and the consultant were right about this, then this condition also causes actual physical pain, which exaccerbates all the other symptoms.
He said that the new consultant had agreed that a secure unit would be the worst thing possible for Mil - that it would be more about her being put somewhere to control her, rather than treat and alleviate her condition. That was scary and really upsetting to hear. He said that Mil wasn't due another review for 2 months, but if it was OK with us, to get round that, they were calling a best interest meeting, it will be in about 3 weeks time, where they ( as in consultant and CH nurses) were going to propose what he called a complete 'strip' - basically stopping ALL Mils meds, apart from the maintenance antibiotics (this nurse had actually spent time charting the number of UTI's and other infections Mil has had, both during the time Mil was on AB's and the times when the GP had stopped them, and said there was clear evidence that Mil is one one of the very few people that actually benefit from them) . I asked did he mean the meds for angina, copd, diabetes, etc. And yes - them as well. Because he said, that as well as the medication for psychosis having been over prescribed, since she had been in the hospital, meds for her physical conditions have also been increased (and no - we haven't been told this before) and that for example she was now on 3 different medications for the angina alone, and that wasn't the only example. He said that he and the consultant had been over Mils medication history and notes with a 'fine tooth comb' and that they could find no reason or justification for why she was on so many pills and tablets that they are having to be given in two sittings each time! Again, this is something else we were not previously aware of. He said that the 'excessive' amount of medication is pretty damn likely to be contributing to the psychosis already caused by the 'excessive' anti-psychotic drug cocktail that previous consultants have prescribed. That stopping them all - if he and the consultant are right about this - could massively alleviate the symptoms for Mil, and give her some peace. That there was just one medication that could be given if all others are stopped, that would alleviate the symptoms even more.
Of course, doing this carries possible serious implications for Mil in terms of the potential for deterioration in her physical health. But, it comes down to her living for longer with all the misery she has now and perhaps being transferred to a secure psychiatric facility for the whats left of her life, or the possibility of her not living so long, but having some peace and maybe even quality of life. After the angst of having to consider haliperidol (sp?) it was a no brainer for me, and OH absolutely agrees - we feel that the second option is the right one to take.
I have a hundred questions to ask, and a lot of things that I want to make sure that I have absolutely straight in my head before the best interest meeting - despite the length of this post, what I've written is only a fraction of some of the things this nurse told me, and my head is reeling with info. There were things about the GP that I need to clarify and possibly chase up, and some other suggestions he made, and things he said that I also need to get clear. So, I'm going to see Mil today and then ask if a meeting with this nurse, and the senior nurse can be arranged, and make sure that I have all the facts right. Meanwhile, awake from 2a.m. this morning, letting the GM have his say, because I should have kicked up more of a fuss than I did about the the different consultants and the cocktail of drugs they gave her at the time - I let myself be swayed by their assurances and justification for the prescriptions, despite my concerns, and I really shouldn't have done. It may not have been deliberate, but I let her down through ignorance - and thats going to take some time for me to come to terms with
Sending much love to you all xxxxx
