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Vascular Dementia and Broken Neck - Discharge Meeting - Carers UK Forum

Vascular Dementia and Broken Neck - Discharge Meeting

For issues specific to caring for someone with dementia.
Hi All, I love this forum and all the posts I have learned so much about care and dementia.

My Mum 84 with Vascular Dementia (Moderate 2 Years). Fell and broke her neck (C1 C2), was given 24 hours twice, has fought off pneumonia, got back up on her feet and can walk accompanied with zimmer frame. Manged to get QE Spinal Unit to access and have said it has started to knit!!! Going back in 10 weeks for X Rays/Scan based on this a decision will be made as to if the collar can be removed or it will be for life.

Her head is in a fixed position and her neck is completely immobilised in a hard collar that rests on her chest and shoulders.

The hospital have called and said they want a Discharge Meeting with view to sending her home to live alone with careers 4 x 30 min a day. I feel like they have already made that decision without knowing the house or talking to my Mum. I get a bit intimidated at meetings and I know my Mum will want to go home, any advice on the questions I need to be asking would be great, really want to be prepared if possible.

Many thanks
I wonder if you could yourself speak directly to your local care agency (ideally the one who would be providing the care - but perhaps another one as well, see below), and telling them what your mum's condition is and whether they think that amount of care is adequate, or whether in their experience (and remember they have FAR MORE experience in looking after the frail elderly at home than hospital staff whose only priority is to get the bed back.....) your mum could ever live back at home??

If they say 'no way' then that is ammo for you at any meeting.

Don't just use the agency who will provide care, as they may 'want the business' and say yes it's fine....even if it isn't.

You could try the same thing with the manager of any local care/nursing homes that would be suitable for your mum, and ask them how much care a patient like your mum would need. Again, they see hundreds of elderly frail people and know the score very well!

Whatever you do make it VERY clear to the hospital that YOU will NOT be providing ANY care - or they will just assume you'll pick up whatever 'slack' that occurs and sort it out. Remember, their SOLE concern is getting the bed back!
Hello Bernadette
Maybe you should mention NHS continues health care. Your mum seems to have complex needs to me! You can Google to research it. Bit of a lottery, but at least you will have some ammunition!
Sometimes, we reach a "Bridge Too Far" and I think you feel you've reached yours? Prepare for a Battle Royal, because that is what you are facing. It will take strength and determination, but a fight well worth it, because you know that mum isn't going to manage at home with both the dementia and this physical problem.
It would definitely be a good idea to look at the local nursing homes, find the ones you like the best, and ask the Matron of two to visit mum and do an assessment, with you present. The hospital will take far more notice of them than they will ever take from you.
Finance will play an important part in the choice of home. Does mum own her own home? Does anyone live with her? Does she have over £23,000 in savings (just yes/no will be fine).
If she is self-funding, but close to the limit, and you do opt for a residential/nursing home, make sure, if you can, that the home accepts council-funded residents as well. Not all do. That way, when your mum does hit the £23k limit, she won't have to move. That's what I've done with my MIL now.

PS - even if you DO want to provide some care to your mum, don't tell that to the hospital! It's about 'forcing' them to provide adequate care for her if they are going to get her bed back (!), and they won't if they think there's a chance you'll cave in and say 'Oh, I'll do it then!'

PPS - it may not feel like it, but you actually have a bit of a whip hand at this point, because the hospital are desperate to get her out, so you may be able to 'drive a harder bargin'. If you feel intimidated (not surprising) can you bring someone with you, a friend maybe, who is 'bolshier' than you???
Hi Bernadette
The helpline has a factsheet on hospital discharge, here https://www.carersuk.org/help-and-advic ... f-hospital

Read it thoroughly.
Try the hospital PALS unit for support
Ensure both her physical and dementia needs are being fully considered.
Keep uttering the words " Safe discharge " at any official. They get penalised for any unsafe discharge.
Make sure OT s do thorough assessment of her, her home and her at home.

As you've found before, information is power
Xx MrsA
You were wondering what to ask about at the meeting. I would raise the question of equipment to help mum return home safely. The last think you want is for mum to have another fall. Can she get to the bathroom independantly or are carers calling 4 times a day to do pad changes? Would rails in the bathroom, bathroom adaptations, profiling bed, stair lift -whatever be needed for mum to come home safely?
What medication will she be on and are agency staff administering it?
Who will be preparing her meals 3 x a day 7 days a week (Let me guess what they are thinking?)
Make sure you put in a claim for higher rate AA and I assume you already get CA?
Does mum have any other medical conditions that might sway a CHC claim.
Do you need SS to fit a keybox so carers can come and go without you adding doorman to your list of duties. I know carers try to be polite by knocking first but I tell all our regulars just to let themselves in as otherwise I just have more to do.
As mum has a broken neck will the hospital be arranging hospital transport and porters to get your mum home safely so you don't have to get her into a family car or on a bus?
If you are nervous about speaking up at meetings make a list of your questions, work out at the beginning who is chairing the meeting and say you have a list of questions you would like to be discussed and give her your questions.
If she needs pads for now can you have them on prescription?
Has physio given mum any exercises to do?
Will you be getting follow up for mum's dementia- who and when?
When my mum was in hospital, very poorly, they still insisted on setting discharge dates which they knew and I knew they could never ever meet. When I asked why, it was to meet some (stupid) government target!!
Definitely insist, absolutely, that a proper Continuing Healthcare Checklist Assessment is done, as this should involve a range of professionals, physio, OT, psychiatrist etc.
It was only when I insisted on a CHC checklist, much to their extreme frustration, that they realised mum was completely unable to walk without her Zimmer, which had been left in her hall at home when she was admitted as an emergency after a fall, by ambulance!!
Thank you all, in answer to finance it is a no and a no (sorted a long time ago).

Prep List;

1. Ask if CHC funding assessment has been done and ask for a copy days before meeting (NHS trust wont be named but worst in country)
2. Call Nursing Home Manager and ask opinion
3. Prepare list of questions (mainly from this forum)
4. Ask for fall risk assessment

Thank you all so much will sleep a lot easier tonight. Any further suggestions please post.
Many thanks
Glad you've got a list. Things always seem more 'under control' if they are on a list!

Take a couple of minutes at the end of the meeting to say 'I'm just going to check all my questions have been addressed' so you can check your list. I find it's tricky to ask a question, get an answer, and the answer raises another question, which you have to jot done along with noting the answer (write it all down if you possibly can!), and then ask it at the end of that answer, BEFORE you go on to the next item on your list!!

If you don't have time to write down the 'extra' question you want to ask, put a big 'STAR' against it, and then at the end you can just glance through your notes, spot the stars, and ask the 'extra' questions then.

You are almost bound to leave the session thinking 'damn, I should have asked about ...' - always happens!

I would ensure you leave the meeting with at least one email address of whoever you're seeing, so you can write to them promptly saying:

"Thank you for our recent meeting on xxx. It was very helpful (if it was!). From the meeting I note:....'.

Then say all that they answered. That shows them what you've come away with, and also means they can't deny it , because if you heard something 'wrong' that email was their chance to correct themselves or clarify etc.

You can put any 'extra' questions in the email, and end by saying something like 'I look forward to your early reply'.....

If you particularly want them to 'repeat' something you could use the phrase: 'I would be glad if you could confirm the following:....' then list whatever it is.

All the best!