Morning everyone,
Wow - thank you to all for such a response to the blog - I really didn't expect that! And thank you to all who shared it. I really do think that anything that gets the reality out there and raises awareness of the condition and issues that come with it, has to do at least a little bit of good. Because if the many awful aspects of this illness are consistently ignored and played down then it enables those that have the power to make funding decisions to ignore the situation - and things will never, ever get any better whilst that continues
Over the last few days alone, flicking through Tv channels, I've seen graphic footage of ill treated donkeys, images of children horribly malnourished and dying of starvation, images of more children and adults with bald heads and clearly sufffering from the terrible ravages of cancer, and a lot of other similar ads and reports on various heartbreaking and difficult issues. Why then, when it comes to dementia, is the approach so sanitised? The worst you will see is an elderly person looking sad (which, without any accompanying text or words to direct you, could be depicting any number of possible scenario's, the images are that ambiguous). Is it all part of the stigma around any issue that people perceive as being about mental health? Because if it is, its wrong. Or is it because there is pressure to not present an accurate reflection of all the facts because of the financial implications? Because that's wrong too. There has to be balance - show the positive stories, by all means - but show the not so positive too. Be accurate and honest. Because the support will never materialise unless its clearly shown why it is needed.
(off me soap box now
)
First news is that the 'respite bed' issue has been sorted in this area. We have it back again. It was all a bit odd though! I sorted out son's hospital appointment yesterday morning and then ran out of time to phone about the respite situation before another appointment. Just got back in the house and the phone was ringing. The manager from the home Mil usually goes to for respite. She had just been told, she said, that Mil wasn't coming to them for respite on Thursday? Cue me being very confused. I pointed out that when I tried to book the bed, she had told me it most definitely was not available. So I'd managed to make other arrangements after kicking up a fuss to Adult services. Told her that they had found an alternative place for Mil for this stay and that I'd booked it. She said that since then, a resident had moved to another home, which made the bed available again. And that it was now being kept for short term respite only. And the same woman that had phoned me from adult services had also left her with the impression that Mil was now coming to them for respite - despite me explaining to that woman that Mil was booked elsewhere and that I was not going to mess the alternative place around, after booking it (because you never know, this just might happen again, so I need a back up on side!). She clearly wasn't happy, but again, it boils down to the misuse of the respite bed in the first place. Just hoping that all this trouble for them (as well as for me) ensures that this sort of situation doesn't happen again!
As for Mil on the new meds. Well, yesterday morning saw the usual coat loop but nothing major. Picked her up from DC to be told she 'hadn't been bad at all' (Yay!). Back home, we were spared the sundowning and constant 'going home' from the night before (it was pretty bad on Sunday afternoon and evening) but she was totally fixated on going into the kitchen. She had pies baking, a cake in the oven, she had left money in 'that cup on the kitchen window', she wanted to get her umbrella from 'that cupboard in the kitchen', she wanted to check the clothes she had put to soak in the sink, she needed to get to the kitchen to go to that 'toilet' at the 'back of it' (?) - the list was endless. Each time I said to her 'Why can't you go in the kitchen, love?' and each time she trotted out the reasons we have repeatedly given her (all to do with keeping her safe). And then she would say 'But I just want to go in there to . . . .' and repeat one of the fantasy reasons. She was increasingly frustrated about not getting in there as the night went on, but thankfully, tiredness hit before she really built up a head of steam and she went to bed. And - she stayed there
We've been looking into different sorts of 'barriers' for the kitchen, but are hitting a snag finding anything other than 'safety gates' because the kitchen access is an archway, rather than a door - and the width of the arch doesn't match any 'barrier' (like a half stable type door) that we can find
With each safety gate, she has managed to actually break the 'hinge' part every time, leaving the gates hanging
We've looked at 'concertina' type doors, but finding a sturdy one that doesn't cost the earth is proving difficult. OH says he thinks he is going to have to build/make something (thankfully, he is pretty good at carpentry) - its just finding the time for him to get it done.
Hitting the local supermarket this morning, for some more Christmas odds and ends - by this weekend, I hope to have everything I want, apart from the fruit, veg and dairy stuff, bought and ready. The tree is finally going up on Saturday afternoon, when all the kids will be home to decorate it, and then on Tuesday, next week, we are going to do a family day at Chester zoo - activating the annual pass that OH has got me for one of my Christmas pressies
Rageddy Anne - I was thinking about you all day yesterday hun - I hope you are OK xxxxx
Hope you all have a good day, bizarrites xxxxxx
