Ye Gods!
Where to start! Excuse any rambling, I've walked out of the hospital not sure if I'm feeling furious, relieved - or simply just vindicated on an awful lot of issues.
Went in and spent a little while with Mil before the meeting. Found her in a really lovely mood, though rather formal at times - she asked me how my 'husband was keeping these days', so I don't think she had a clue who I am to her, but as long as she was fairly cheery and chilled, no problem.
Then called through to the meeting - Dr R, the junior consultant (who I've met several times), staff nurse M (again, spoken to her a lot), the CPN and the new consultant, Dr M. Initial impression - Dr M seemed, I felt, quite defensive, as though he was expecting me to be difficult (moi???). He started by explaining very firmly why Orlanzepine was being removed - because it can impact quite badly on diabetes, apparently! (I had previously been told that orlanzepine was staying because it is a mild anti-depressent - first I've heard of it presenting issues with Mil's diabetes!). I got the impression that I was expected to argue with that - but I merely pointed out that I have repeatedly said that I have never felt it made any difference to Mils behaviour, anyway, and this was confirmed by the CPN.
The next bit floored me. He said that he believed that somewhere along the way, 'someone' had 'mentioned' LBD to me as a possible diagnosis. I told him that no - it hadn't been merely 'mentioned' - that actually, 2 or 3 consultants back, a consultant had told me very definitely that Mil has LBD and that all her meds were changed as a result.
He didn't really respond to that, merely saying that after Dr G had 'expressed that opinion', that a Dr A (and I can't decide if the name he gave is familiar or not, tbh) had reviewed all the information and notes and decided that no, Mil has 'AZ dementia of the mixed type'. Again, I interrrupted - because this was news to me - I pointed out that absolutely nobody had ever told either myself or OH this. He said something about how all psychiatrists have different opinions (no s**t, Sherlock!) and then went on to say that at the point Mil was admitted, she was on a cocktail of drugs that was quite probably making her worse. He gave a specific name for the practise of 'over-medicating', but I'll be blowed if I can remember the term he used at this point.
He then said to me that he had spent a full day going over all Mil's notes, right from diagnosis, and that he was as sure as it was possible to be that Mils diagnosis of Mixed AZ and VaD was the correct diagnosis. But that the frequent medication changes and the high doses had probably caused more issues and not helped her particular presentation. He told me that guidelines advise that minimal use of anti-psychotics should be used with dementia of that type, so he intended to follow those guidelines and minimise the drugs given. He added that he couldn't be 100% sure that it wasn't LBD - just that he assured me he had gone over and over Mil's notes, and that AZ, mixed with VaD was by far the most likely correct diagnosis.
I expressed concern about the re-introduction of resperidone, explaining my concerns about its impact on her mobility and the parkinsonisms, and how I felt she had improved (mobility wise) since it had been stopped - and the staff nurse confirmed that Mil's mobility at the moment is really, really good by comparison to when she was admitted. He told me that actually, the problems had probably been caused by Mil being on a high dose of resperidone for too long. At which point I came close to losing it. Because as I pointed out, about 18 months ago, I raised this as a concern, that a consultant had come out to the house and catagorically stated that the resperidone had absolutely nothing to do with either the gait Mil had developed or the tremor - and now this Dr M was telling me that yes, it was responsible. The CPN confirmed all I said. Dr M went on to say that he had been very careful to follow guidelines, and that such a small dose was being used as a prn, that it would not exaccerbate mobility issues, the parkinsonisms, at all - but would help when her behaviour became difficult. He said his main aim was to reduce the medication, that the resperidone would now be very carefully monitored. He said that - for the moment - he felt that Mil was at the optimum level that could be acheived, given the diagnosis and her particular presentation, adding that this could only have been achieved in hospital as you just can't change these drugs quickly with any safety. Through gritted teeth I said that was exactly why I kicked up such a fuss when they tried to discharge her - that I'd even asked for the admission in the first place because I was concerned that all these different drugs were not helping and that I didn't feel it was safe for me to continue deal with the constant changes at home. I didn't get much of a response to that, and Dr M moved quickly on to say that he felt that Mil was now at the point where she could be discharged.
So, I asked, in the light of all Dr M had said, if an EMI home was really the right place for Mil to be discharged to?
M, the staff nurse took over. In their 'professional opinion' she said, Mil needs an EMI nursing home, not just an EMI unit. She said that most afternoons, Mil became 'distressed' to the point that for 'long periods of time' she required one to one support from the ward staff - which couldn't be provided in an EMI unit - in order to prevent her becoming aggressive. And once again, I got the impression that they expected me to argue with this - I told her that I was actually relieved, because I had been so worried that Mil would go to the home of our choice, that they wouldn't be able to cope, and we would have to uproot her again, possibly with an inadequate time allowed for us to find the correct place for her. I said that the aggression I witnessed had convinced me that it had to be specialist care. The CPN said that she thought that I was 'starting to struggle' with Mil anyway - I said quite flatly that I thought I coped pretty well with everything else, but when it came to physical violence, there was no way I could cope - that Mil flipped so quickly and that it was so unpredictable, that I didn't think anyone could in a home situation - Dr M interrupted to say he had read everything and he felt that we had dealt with more than most families possibly could. The staff nurse agreed and said that they felt the same - that Mil was so unpredictable, going from nice and jolly to furious and aggressive temper with little or no warning, that they would almost have to insist on professional care for her and that OH and I had done amazingly well to keep her at home as long as we could.
So that's it. I was right to be worried about the resperidone causing the mobility problems. I was right to be worried that the drugs, and the constant changes in medication, were making her worse. I was right to say that I couldn't continue to oversee the changes in medication at home because I didn't feel it was the appropriate place to deal with such serious drugs and the possible side-effects. I was right to insist on Mil being admitted and to push for it so hard, to get the meds sorted. I was right to kick off about them trying to discharge her when all they had done was stop sleeping tablets. I was right to be worried about the reccommendation for an EMI home, rather than nursing EMI. I'm cross because of all the times when I've been left feeling as though I was being a pain in the backside and over-reacting - suddenly (although there wasn't a hint of an apology) all the concerns I had expressed feel totally justified, the ever changing meds and succession of consultants did make things worse. I'm relieved that now at least we have a clear direction to move forward into.
I was told that Mils care will be fully funded under the 117 still, and that I didn't need to worry about or do anything about that. The staff nurse said she would go through everything in detail with me, about what happens next. I was given the name of Mil's social worker - news to me, we have seen about 3 whilst she has been in so far, had no idea that there is a specific named one still - and she will liase with us to find a suitable place for Mil - it's doubtful it will be in this county, there just isn't adequate provision here - but two neighbouring counties may be possibilities. OH and I now I guess (going on past experience) have to stand firm and see that whereever she goes is where we think is the best place for her - not just the first available option that arises.
Reeling from all that, I went to se Mil again before I left, and found that old unpredictability had reared its head again. Back to the pretty nasty, pass-remarkable persona. Comments about the staff and fellow patients - none of them at all flattering - and a fixation on the female patient that Mil has already had several run-ins with. Mil kept going on about how she was a 'gangster' and that Mil 'hates her' - because she always has a face like a smacked ar$e, apparently - and 3 times Mil said that she was going to 'deck her if she doesn't take that look off her face'. She also pointed out the consultant as a 'gangster' - she said he only pretends to be a doctor! When I tried to remonstrate with Mil, she informed me that she 'knew she could wind me up if she tried" - so I decided to leave. I did tip off the staff about the aggressive threats before going though. Waiting now for the list of homes that the CPN said she would get to me and to hear from this SW.
Sorry for the long ramble - still a bit gobsmacked, I think!