Separate names with a comma.
Discussion in 'Middle - later stages of dementia' started by callyb, Nov 27, 2015.
Good luck for tomorrow, think you should still push for gp visit whatever the outcome.
Thank you - and you're right - mum needs to be reassessed whatever the outcome...I'll arrange a gp visit asap and make sure i'm there for it...
That is a really good plan Cally. Good luck and thinking of you. I do hope you are feeling a little better xx
Wow! I'm so exhausted!!! But it was a better day...Mum by now should have her codeine and the staff are testing her for a urine infection too (at my request - she felt hot). I spoke to the nice carer at the home and she was great - said she'd get me in to see the 'head of care' at the home who could tell me what had been happening, and if I wasn't happy then I should get a gp visit booked. So I spoke to the head of care, and she told me it was the local Community Nurse Manager who had seen my mum and done a 'test' on her that seemed to indicate she wasn't in pain but that she had an exacerbation of her illness...this was the nurse who had also 'reviewed' my mum's meds and taken her off codeine and put her on paracetamol, (not helped by the fact my dad had apparently brought in only out of date codeine for her even though her prescription is current!) The CNM had also started a review into mum's care to see whether she should be moved to 'nursing care' from the dementia unit. This was yesterday and without any contact with me - although they had told my dad (who didn't really understand what they meant). I was beside myself last night when my dad told me as I really couldn't understand how it had happened without any communication with me about it...but I've now reiterated that any change in treatment or medication has to be notified to me, which the home at least are happy with. The head of care seemed genuinely concerned when I explained about mum's background of back pain and my conviction that she needed better pain relief and very quickly said she would explain this to the Community Nurse Manager and she would get mum back on codeine to see if it might help, which she has done. I also said I thought it might be best to get mum seen about her pain and her back and so I would be perhaps getting a gp visit. The CNM came to see me shortly after and confirmed re my mum 'we've tried her on paracetamol for a week so we can try her on the codeine again'. I'm afraid I have taken an instant dislike to her, and it seems so has my mum, who was much quieter and calmer the whole time I was there (I think she loved the essential oils, Fizzie!) got very agitated and upset when the CNM came in and talked to me - I'm pretty sure the 'test' she did with mum was not pleasant for her. When I asked why mum had not had a review of her meds with the GP as I thought that was how it was normally done, she told me that she guessed she was the GP's 'proxy' in this situation. Well, I've never heard of CNM's and normally I'm definitely a girl power kind of person (ok - a feminist - I'm not ashamed!) but in this case, I'm sorry but I'm going to be requesting the GP visit after I've seen how mum is over the next couple of days - and I will at some point need to express how unhappy I have been with the CNM what I perceive as overstepping her authority. But at least I feel we're now a bit more on track - mum has her codeine and we'll see how that helps - I'll ring tomorrow to make sure it's being given, and I'll go over again in a couple of days. And I realise that the home is I think not the one at fault - though there wasn't as much communication as I'd hoped I think that was just teething problems - it does seem it was the CMN who single handedly took mum's codeine away and did the assessment without any reference to me. But I'm just exhausted, and really scared that maybe I'm wrong - maybe it's just this awful disease that's caused mum's dramatic deterioration...but one day at a time I guess...and my gut feeling is that something else is making it worse at the moment so we'll see... I'm gonna have to go but I just wanted to report back - and let you know Fizzie particularly, how it went today....thanks again for all your support on this - I will get that pm off to you v soon! I'd be very interested if anyone else has come across the CMN's in relation to dementia though, apparently they focus on older people I think...and if anyone has had a good experience of what they do (or not!)...
Wow you have done a really good job - no wonder you are exhausted. You must be relieved that the home is not the problem. I agree that a GP visit is a good idea because it would give you a chance to talk to him/her build a relationship and I haven't heard of the CNM being so involved either - but you could make it clear to the GP that your Mum isn't happy with her and neither are you and then the GP may well take back the primary care position.
From everything you have said I don't think you are wrong - your mum was clearly in pain and that was causing agitation and it will take a few days for her to settle back onto the codeine. There has been a move away from codeine I believe for patients where it was prescribed but something less would do the trick so perhaps that was the thinking behind it (combined with the out of date meds lol).
So pleased the oils went down well so now it is your turn to pamper yourself and get a good night's rest so that you start to feel much better too
Sleep well, well done xx
Thanks Fizzie - I totally agree - on all fronts! And thanks again - talk soon! x
Well done getting Mum back on the codeine. She is lucky to have someone to fight for her. It may well be that other medications will work as well but very thoughtless to force the change when she was unsettled.
I was horrified when I read your thread just now.
But glad you have got it sorted now , Well done !!!
My understanding of CNMs is, they used to be called district nurses (I like some here still use that term) it would seem that she is their manager.
I'm guessing that she will be more careful with your parents now she has seen that you are actively involved with mum and dads care and you will do whatever is necessary to ensure they are well cared for
Having said that, I would speak to the GP about what has happened.
I hope your Asthma has eased up, mine playing me up atm.
Thanks for posting Lin1 and rhubarbtree, it has been a really hard time...I guess I really only thought as far as getting my parents into the right home, and naively thought it would be all ok when we did!
Although I feel more in control now, I still feel I'm playing 'catch up' with the CMN - and I know what you're saying Lin1 about her being a district nurse - I love district nurses...they single handedly got me through a nasty cancer 15 years ago and I never thought I would have anything but praise for them - I guess maybe I've just met my first less straightforward one! But she also definitely has a new role - and her perception that she is the GP's proxy worries me - I don't want her to be able to review my mums meds without any reference to the GP or to myself/my family and I don't think that's good practise from what the NHS guidelines say. She's also begun a review of my mum's care with a view to moving her to 'nursing care' and although she says this is a 'nursing issue' and will be 'nursing led' it seems to me that she's diagnosing my mum herself and 'prescribing' the next stage of her treatment without reference to a qualified doctor or really to anyone else. That I am not happy with, and this week I do feel I need to express that very clearly to the home, to the social worker who rang to introduce herself when I was there, and to the GP that I need to arrange a visit from. I also strongly feel she's skipped quite a few steps - like doing a pain management review, and allowing my mum a little time to settle in and recover from the huge shock of the move! Although she says it's all about staffing ratio and making sure my mum has the right staffing ratio, (and then as an afterthought she mentions it's also about making sure my mum's eating properly) my gut tells me it's a slippery slope that may well make the interventions more likely that I know my mum wouldn't want. And the fact she did an assessment on mum without any ref to me/the family that then informed the home that mum wasn't in pain and her deterioration was part of her illness and likely would not improve seems to me to be way beyond her authority!!!! Anyway, rant over! The good news is that I got such a lovely email from my dad after I'd gone the other day telling me he had the most relaxed evening so far with mum, sitting with her with the oil diffuser on and she was recognisably more relaxed and happy - and even said a little phrase she uses when she is happy at one point - which she hasn't done since before the move! Her appetite has been better for the last 2 days too - and after I phoned to make sure she was getting her codeine (she wasn't - the **** nurse had put her on 'prn' (as needed) which for someone who can't ask for it is a bit stupid I thought...so the home agreed to try her on twice daily to see if it helps) and tonight my dad said that after her codeine, although she wasn't quite as relaxed and happy as after I'd been and done the massage etc, she didn't have one screaming bout - which is huge! So we'll see how mum goes over the weekend, and if she continues to improve I will ring the social worker and express my concerns over the CMN, and also arrange the doctors visit to ask them to oversee her care and review her pain management/general care. So hopefully I'm getting there - with a lot of help from some very generous people on here - I'll keep posting and hope one day I can be as supportive of someone as you have been to me!