Hello all,
No it isn’t going to be easy for any of you, I just seems to me that there is a possibility that there may be some peace for you all. Mil may never be totally calm, but at least everything possible will have been tried.
It's the possibility of some peace for Mil that I think is the most important , 2jays - and as I said before, you are right - its that I/we need to work towards and focus on now x It was good to read how you, and so many others also felt that the meeting was actually quite positive, because that's how I felt, for a lot of reasons. For example, I found myself feeling incredibly relieved at the thought of the meds going,
not just because of the damage that it seems so many have done to her, but also because she is getting increasingly non-compliant about taking them and trying to persuade her/make her take them is causing her a lot of upset, often triggering the melt downs and aggression. Her not having to go through that any more translates as another positive for me, because its one less bit of misery for her. As Red says - its the focus being very firmly on quality for her that is the most positve.
I confess, Canary, that I have spent some time trying to find out more on the good old interweb about 'over medication of anti-psychotic drugs in dementia treatment', 'combination of anti-psychotic drugs with angina medication/medication for COPD', etc, etc - it is, as so many of you have said, flipping impossible. A minefield of scientific studies with words I can't pronounce, much less spell; terms I have never heard of, that I could spend eternity trying to translate into something that I can undertand; link after link to associated studies and references that just leave me cross eyed with confusion. I
think I am reasonably intelligent, but it's all so complex that it all may as well have been written in greek as far as I am concerned. Even now, I wouldn't have the time to spend the hours required to untangle all the information and educate myself on what it all means - and it would have been so much harder, impossible even, to find the time and energy needed to try and understand it all while Mil lived here.
Carolyn, I think that Mil too would be deeply relieved at not having to 'go on' like this, if she had the capacity to be aware of her situation. There is a fine line between prolonging life - and prolonging death. Given what Mil has been and at this point still is going through, in her case that line has been crossed. Physically she has deteriorated a lot since Christmas. From what I was told the other day, its since then that there has been an increase in things like the angina and COPD meds, which have been given without considering the quality of the life that they are potentially prolonging. It may be - Mil being exceptionally good at defying expectations - that these drugs will be stopped, and she will still keep chugging on for a long time (one staff has said this, with a grin, adding that she is a 'fighter' and like the 'duracel bunny - she just keeps going'). If she is calmer, if she has some level of contentment, they we will just appreciate that for as long as it lasts. But as its more likely that the health issues will worsen and lead to her dying sooner, I am hugely reassured by her being on this pathways programme and knowing that its all about quality and comfort for her. There are, as you say, a lot of layers - but I'm working through them with OH and feel that we may well be on the right path for her now x
Spamar and Slugsta - I used to do foot, hand and scalp massages for Mil on the rare occasions she would let me - and she loved 'em. So in her case, they would be tried as part of her 'plan' - if she had felt as you two did, they wouldn't feature
Nurse L told me several times that its about the 'details that will make a difference to the individual' - so if the pwd gets comfort from hand massages, or the smell of lavender, or from hearing a favourite song or singer, then that is included in the care plan - and detailed notes are kept to ensure that any changes in preference (like a tolerance to music) are noted. (And I am stamping down on the little voice that is saying 'too good to be true' )
Lemony - it's so lovely to see you on here again, Hun - thank you so much for posting xxxxx If it were just one consultant, you bet your boots I'd complain - but it isn't
Mil must have seen at least 8 different consultants in just the 12 - 18 months before she was even admitted to hospital. Then the ones in hospital, and now at least another 2 since then. All of them - up to this current consultant - changed, added, withdrew or otherwise 'fiddled' with her meds. You can add her current GP to that mix (and again - I have asked for him to be changed and been assured by Nurses D, L and M that it will be sorted). Trying to work out which consultant(s) prescriptions and changes actually caused the damage is pretty much impossible. I think the best I can do is, when I can, complain about a system that allows this sort of situation to develop.
Mil does have a history of possible TIA's. Thank you - that is definitely something for me to ask about - I don't know what they can do about it, but if it is happening then surely its important that staff are aware of it xxxx
I'm popping in to see Mil today. I forgot to say that when the annoying staff was telling me about Mil's supposed 'fire', Mil's cooking was mentioned and that led on to the concerns about her current lack of appetite. I was asked were there any foods that she used to particularly like when she was 'off colour' and amongst other things I said 'Oh, and home made leek and potato soup' - at which point Mil actually interjected 'Love leek soup'! much to mine and the staffs surprise. So bubbling away on the stove at the moment is a pan of said soup, and I am taking her a flask in. She may not fancy that either when its offered, but its nice to actually do something for her that there is even a slight chance she will enjoy.
The weather here has turned horrible, rain all day yesterday, back to quite chilly and overcast today - and thunder and lightening storms promised for much of tomorrow. Plans to tootle off with my camera have been abandoned, and instead I'm going to give the house a darn good clean - it's long overdue! Best friend is coming for coffee this afternoon, and then I am meeting OH for a swim at about 6pm. At the moment, I'm back to waking between 3 and 4 a.m., so I am hoping for an early night tonight, to try and catch up - the cup final being on (is it the cup final? Something like that, anyway) gives me a good excuse to going to bed vey, very early, which suits me fine.
Again, a million Thank you's for all the words of reassurance and comfort - it may take me some time to listen, but I get there eventually and I appreciate all so much xxxxxxx