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New to dementia journey - Page 87 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
936 posts
What a difference today. Hubby happy and eating reasonably well Tum flat. One of the staff asked him if he was ok. Yes was the answer, P******* ( me) is around. Lovely, but oh the surge of guilt I had.
I'm trying so hard to cherish today, but the back of my mind is waiting for the next blip.
Do they know what it is keeps making his tummy blow up so? (Sorry if prying, just feel so involved )
Your not prying Mrs A. I share this journey good and not so good. It's called volvulus, in hubby's case a kink in the bowel. He is too frail to undergo surgery, the consultant feels, and my daughter's and myself agree. He has other complex needs too. To be honest, no one has an answer.
Had the funding meeting today. Even though there was one held on the 10th January. To cut it short, its not looking so favourable. The keyword now seems to be " his needs are being managed"? Fortunately the social worker did not agree with some of the assessors scoring tactics, and is going to contact the GP and psychiatric. Both are going to read all of the records again. So its watch this space, and try not to be too anxious until I hear from them. That isn't going to be easy. The CHC system has changed drastically in my opinion.
Hubby was OK today, nearly choked yesterday, but apparently that was managed!!
Hi Pet, have PM'd you.

Only just read the last couple of threads but sending hugs of shared frustration over the CHC decision of things being managed. I recall only too well how all things seem to be miraculously managed by the CHC MDT assessment. It seems to me that when dementia is in the mix it is pretty much a none starter and the only remote chance of winning is by appeal. You may need to decide if you have the strength and inclination to follow all this up. It is so hard mustering up the time/gambling on all the energy you are putting into it when you are already run ragged by thegeneral situation. It seems they probably meet little resistance by most of us and save hundreds of thousands in the process.
With hindsight- do I wish I had taken on the battle and fought harder (perhaps like our Millie?) - probably not. I wish you peace over your decision

The one that really bugged me over my dad's assessment was that his skin tear wound that needed daily packing by district nurses for 18 months was "responding to treatment".
Hubby has so many complex needs, that he could not survive without nursing. 3 staff have to help with hoisting, and sadly hubby turns on a sixpence with his aggression. He can be very compliant, then get very aggressive. This word, managing, is ridiculous in my opinion, because surely all residents are managed? Yes, if needed I will appeal. My head is thumping at the moment. Xx
It does sound daft.
Have they not been given the list of times he's been in and out of hospital for medical reasons?

Are they trying to say CHC will only be paid for people who's conditions are so badly mismanaged that they are deteriorating, despite receiving medical care?

Might be time for an advocate or legal help Pet

Today my head is still whirling, but am a bit calmer. I've started some notes on some of the things I disagreed with yesterday. Will wait for the outcome but am preparing. I've also googled the sort of help I could get if needed. Specialist solicitor. DD2 went today, and he was fine. 2 grandsons went too and he was pleased to see them. Expect I will start to feel a little better shortly.
Well done, you.

When do you receive the decision?

936 posts