Needs assessments at hospital and best interest meeting

For issues specific to caring for someone with dementia.
Hi everyone
My mother has now been in hospital for over two months. She was doing ok at home with 4 care visits after a fall in November;(incidentally I was not v happy with discharge at that time as we d been promised intermediate care and reablement which was changed at the last minute to a care package from SS) but she then had another fall 16/12 and then 3 more falls IN hospital (one due to negligence imho) So she is now frightened to mobilise and her poor appetite has also plummeted to zero virtually. She is doubly Incontinent too and assessed as no capacity. We have poa in place for both health and finances. She will be self funded.

For the past month at least we ve been waiting to be assigned a social worker and have a best interest meeting. After SW was assigned, they went on holiday so all been delayed. Then a stand-in SW assigned and date set for Friday - then today SW came to me and said. "We no longer need a meeting as everyone is in agreement that mother needs 24hr care". After waiting all this time for our meeting, my brothers are asking that it goes ahead, which I agree - it's only the day after tomorrow, feels unfair to cancel it. But in reality it's the only time we ve had opportunity to all hear what's been happening - other than chasing different practitioners in the ward.

What should we be asking? Who should be there?

Your experience and suggestions appreciated. I am aware about CHC and apparently manchester has the Joint Working Agreement, so they are suggesting CHC assessment will be done in care home and we will get 6 weeks care fully funded - but after last discharge I m wary

Feel like I m doing a crash course degree I ve done so much reading!

Thanks for being here folks
Yes and she's had her Alzheimers for over 10yrs and diagnosed for 6
Hi Alison

Sorry to hear about your mother and what you're all going through right.

Tell me, is the plan for her to return home?
Be clear about what YOU want to happen. If it's residential, have you chosen a home. Insist on a CHC checklist meeting so you get to see reports from all concerned. Remember as you have POA you are in a strong position. Have they got a copy? If not, take one to the meeting. Stress the fact mum doesn't need ANY MORE failed discharges, I'd suggest moving to an EMI Elderly Mentally Infirm home which can cope with anything, for the rest of her life. Has she had a recent brain scan? I know how sad it is accepting a parent can't evef go home, concentrate on what mum now needs, now wants.
Thanks , yes we are agreed on 24hr care for her as I can't see how it can work at home with only one bedroom and her mobility inontinence etc
We ve seen two good places we like and could be affordable long term (unless we are eligible for CHC ) but they don't have vacancies - SW said we would have to take done where either a vacancy as "you can't stay in hospital" which made us feel great as you can imagine.
If you read the CHC framework, I'm sure it talks about the requirement to choose a home close to family because of the Human Rights Act to a "normal family life". Print off this section and take it to the meeting. This principle applies to everyone, not just CHC claimants.
I found when trying to claim CHC that lots of staff thought they knew what it said, just because it was on their computer, they didn't even have a printed copy in the Complaints Department!! If you can possible afford the ink, it's well worth printing off the whole Framework and then going over it with a highlighter pen, then using post it notes so you can find the highlighted section quickly.
(One cardtridge of ink costs less than one day of residential care!)
Also print off your own Agenda for the meeting, pass it round, and say "These are the things I want to discuss today". This will give you an element of surprise, but also means they don't just talk about what they want to and then say they have to go for another meeting! I've seen that tactic many times.
Dress formally, shows you won't be messed with, and that it's an important meeting for you. Arrive early, so they don't have a pre meeting meeting without you. Allow oodles of time for parking etc. so you are not flustered on arrival, but cool as a cucumber.
Make notes as you go along of who says what, and if they go too fast, don't try and keep up, instead tell them to slow down for you, as they should be respecting you. If they use abbreviations, make a point of explaining the words in full even if you know what it means.
Take control of this meeting. It takes guts, but you CAN do it. After all, there's a lot at stake, the whole of the rest of someone's life.
Brilliant advice bowlingbun - I will use all these strategies
Thank you for taking time out to make these suggestions.
I've learned everything the hard way! I especially dislike being bullied, and outnumbered, tactics which hospitals and social workers have been known to try. I just like to even the odds if possible.
Update. The meeting went pretty well. I certainly got one orvtwomthings flagged up and expressed my concerns. BowlingBuns advice definitely helped!
They say she needs "Nursing care with Dementia Understanding" What is frustrating is having to make the best interest decision, without any mental health nurse assessment or expertise

Mum was diagnosed Alzheimers in 2012 and probably had the disease since about 2005. So even just time wise she has come a long way remaining independent with lots of careful planning and input from me and bro. Last year (2016/17) I began to realise that Mum would be losing independence because of her deteriorating self-care. Put more carer time in place, but she was resistant to any self care help - but on the whole carried on with her routines, lots of prompting around the self care (toile). Socialising with other people quite well with her well rehearsed stock phrases and moments of clarity. However we worked it out and she stayed in her flat , enjoying her weekly activities, minimal carer visits to prompt eating / meds / washing and days out with family plus activity and friendship in her retirement flat.. She was becoming more unsteady on her feet but was basically walking unaided or with a stick when prompted. She had a number of falls at home Nov / Dec and then, crucially, in the hospital fell again at new year and now, just 2 months later she won't get out of bed , will barely eat (chewing and spitting out) and has lost all her motivation. She can still play a mean game of scrabble and has a fierce sense of independence and it exhausts her to think and hold onto her fading memories " I just want to sleep" She hates the hospital staff who are in the main excellent carers - they seem to brush off her aggressive reactions to self care as "normal" which I do understand. The ward is dark and dingy.

She has never been reassessed by any dementia specialists since about 2013, when the memory clinic discharged her to the GP with 15mg Memantine.
We ve seen a lovely home that has nursing care floor and a dementia residential floor - but no EMI nursing on site. The hospital say she doesn't need EMI. My fear is she may either improve when she comes out of hospital in which case she would be lost in a room with lots of EMI or more advanced conditions - or she could become more aggressive over the coming months and lose her new home in the residential with nursing place if they decide she needs EMI. No way of knowing really - apart from how well she was only a short time ago - but the brain scan, following her fall showed "massively shrunken brain" according to the doctor.

The other places that do have EMI seem more aware and geared up for Alzheimers - one place I ve seen has residential dementia, EMI AND a day care centre for the community. I like it but it's got no vacancies and it's more clinical. Also the rooms are tiny and it's not as homely - the first place will feel more like home to Mum and I hopefully think she'd fit in there.

I must say writing all this down helps in a way - I swing from thinking one place or the other would be better it feels a big decision to make without some professional advice and overview. I get the feeling reading between the lines that hospital just want her out ASAP and if they suggest EMI it will prolong her stay on the ward, as evidently EMI places are harder to find. Or am I cynical? They say "we only assess her as her needs are NOW, we don't look how she might be later on, we can't do that"

Thanks for reading and hope everyone manages to take some time out for yourself - even if it's just a bath, a short walk or a night out at the cinema. Reading these posts I see how dementia engulfs lives and people give themselves so lovingly, but often forget to love themselves. You're loved ones would want you to.
Did they arrange Continuing Healthcare for mum?
Think hard about what she NEEDS, for example a home might have lovely facilities but would she ever be able to use them. My mum was in a wonderful home with coffee area, speakers coming in, a minibus, daily trips out. Mum refused to leave her room so she was paying for things she never used.