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Dementia care and discharge from hospital - Carers UK Forum

Dementia care and discharge from hospital

For issues specific to caring for someone with dementia.
Hi, i am new to this forum and just wanted some advice please. apologies in advance for such a long post-

My mother in law has now quite advanced dementia, she was still living at home alone with two 30 min care visits a day until 4 weeks ago, when after kept insisting she was not coping and had a doctor see her, she was admitted to hospital with severe dehydration, poor bloods and kidneys at less than 20% function.

my husband and I have been "managing " everything as best we can albeit slightly remotely for her for quite sometime,

she had been properly means tested by adult services and is being funded. although she pays towards it as has a decent pension, just no real savings.

we thankfully, have POA in place for finances and are able to keep on top of that, I manage all her household bills and food shopping etc and try to keep everything together, we had gas fire capped as kept leaving it on etc. but we both work long hours and are not that local to her- so much of it is remotely done !

it was all ok for about 20 months or so, although things had been gradually going downhill, she is extremely proud and quite feisty, is still quite mobile but now gets confused with preparing her food and eating and preparing drinks, despite very regular bowel leaking problems she refused to wear any sort of pads or any help with any personal care and insist she had already showered and washed etc every single day when clearly had not for quite sometime, in fact for up to a year we estimate.

we could see the mess the house was getting into the faeces were stains., we cleared up as best we could but she would get so angry if anyone interfered- it has been a real struggle

Quite frankly, I could see she was heading to crisis and have been trying our best to help her while pushing adult services and her social worker to get her more support,.

she also had bowel cancer about 15 years ago and has been clear up till now, when admitted to hospital the doctors suspect it has possibly returned but are limited in their diagnosis options as cannot conduct invasive procedures or CT scans etc to determine this due to poor kidney function and her frailty (she is just 6 stone !) and of course the dementia on top of that.

despite that is she bright in herself and doctors in fact could not believe how active she still is, as from her blood work and poor kidney function she should be laid up in bed ( but as I say she is a very feisty and strong willed lady :-))

so, the hospital declared her last week to be as well as they can now get her medically and wish to discharge, Adult services had a meeting with us both to discuss best options for her , I am afraid, for her safe guarding, our wish would be a move to residential care where she can get help and support at all times and also for the social aspect as she enjoys others compan very much. but sadly we did not have a health POA in place so, as my MIL was able to tell the social worker , "no i want to go home " -even though in my experience I do not think she knows where "home" is, as she has settled very well into hospital routine and not asked about going home in 4 weeks- her wishes have to be, of course, respected- which i do understand but it worries me greatly.

so, the social worker initially suggested sending my MIL home with 4 x 30 min visits per day - as, and i quote " she has been managing on 2 x 30 min visits per day"

we pointed out that clearly she has not been, otherwise would not have ended up in hospital :-(

my husband point blank refused this suggestion, as the thought of her sitting for 6 hours plus with soiled diapers etc or worse removing them herself was not even an option plus the loneliness of it.

so, they are now proposing they find her a live in carer - which i am still unsure about but at least she would have help and support ( provided she will accept personal care at home now - since she has been accepting it in hospital finally )

as a foot note here, while she has been in hospital we took the opportunity to go over and deep clean her whole place for her , carpets as well and sadly found. traces of her bowel problems everywhere, multiple soiled sheets, soiled beds in every room, hidden soiled clothing all sorts, some of it over a long period by the looks of it, as we were unable to get some items clean and had to dispose of two complete beds which were a health hazard

it is heartbreaking as she was the cleanest person i know if and so very houseproud- she would have been mortified if she understood....

so after this very long introduction, i guess i am asking for others experiences of live in care at home- can it work or ultimately is it just a stop gap to a move to more supported care ?

it is all such a worry and despite much research on all aspects of this, and us trying to do the best we can for her, we do not quite know what to do for the best at this moment in time.
Hi Julia ... welcome to an extremely quiet forum as I type.

Your posting screams out two things to me.

Hospital discharges ... the BIBLE :

https://www.nhs.uk/using-the-nhs/nhs-se ... -hospital/

A case of " Dumping " as opposed to a carefully crafted care plan AGREED WITH YOU in advance ????

CHC / NHS Continuing Healthcare ... even mentioned ????

https://www.nhs.uk/using-the-nhs/nhs-se ... -hospital/

Have a ponder ... especially the first link.

Then return to us on the forum with your thoughts ... and we will have a go at suggesting some actions.

One more for the road ... a mini bible on home care services :

https://www.carersuk.org/forum/support- ... site-37984
Thank you for your reply, i did look into both the links you sent and the information was very much appreciated.

i am pleased to report back that the Social worker at the hospital, after various discussions with us and her managers has now decided that return home with a live in carer would not be the most suitable option for my MIL for various reasons the isolation regarding where her home is situated and also her ever increasing care needs, so she has just secured her a place at a (local authority run) residential care facility, that is 5 minutes away from our home,, We both had an opportunity to visit there at the end of last week and liked the set up and also met and liked the manager and care staff- so, fingers crossed she will be discharged there later this week sometime and we can be on hand to help settle her in.
Your welcome.

An error in my reply ?

CHC / NHC Continuing Healthcare ... link to the main thread :

https://www.carersuk.org/forum/support- ... read-35998


Well worth exploring ... even if a case of " Down the line. "
Hi Julia, I feel a sigh of relief?
Emptying the house will be an enormous challenge, once she has settled in and cannot go back home.
Does she own, or rent, he home?
Have the council explained how charges for the accommodation will be made?
bowlingbun wrote:
Mon Aug 12, 2019 4:27 pm
Hi Julia, I feel a sigh of relief?
Emptying the house will be an enormous challenge, once she has settled in and cannot go back home.
Does she own, or rent, he home?
Have the council explained how charges for the accommodation will be made?
Thank you , yes a very huge sigh of relief :-)
we just have to get her in and settled now - fingers crossed this will go smoothly.

We have taken the opportunity to get a deep cleaning done and been repainting the house inside and out in the five weeks she has been in hospital in readiness for either her return home or in the event of having to sell.

She owns the property but it is not a house as such but a mobile (park) home on a private site, I realise it will need to be sold to help pay towards care costs, but in the meantime she will still be responsible for the monthly rent payments for the plot plus various utilities, home insurance and the costs of the gardener etc (there are rules on keeping everything spic and span at the site)

i have already identified and documented these costs and will outline them when we have the meeting with the FAB team from the local authority who will, I hope work with us to figure out how much she will have to pay from her pensions towards the residential home costs.
as this care home is actually owned and run by the local authority i am hoping that the process will be simpler because there is no third party to pay- as would be in the case of a move to a private care facility with local authority funding ?

the council have not really explained anything yet but i have read up a fair bit on it, she does at least come under the £14000 or so, threshold for savings etc she was means tested a while ago when identified as needing the care visits at home anyway.
this new test will be more invasive from what i have read

anything else you can think of that I may have missed , please let me know and thanks for the replies.
When it comes to a potential move into a care or nursing home , AGE UK have numerous guides covering everything from A to Z :

https://www.ageuk.org.uk/

Their " Virtual assisstant " is second to none !

Don't lose sight of that CHC / NHS Continuing Healthcare link ... perhaps not now but ... if her condition deteriates ?
Be sure to contact mum's insurance company and explain that she has moved into residential care, as many policies won't cover a property empty for more than 30 days.
Also ask the neighbours and the park operator to keep an eye on the home. Usually I think they are fairly close knit communities.

I would suggest that you go to the ".gov" site and search for "Charging for Residential Care". Download the document, make a coffee, arm yourself with a highlighter pen, and then work through it. (I prefer paper everything rather than reading documents on a screen).
Hopefully as it's a council run home, they will be easier to deal with.
If I remember rightly, the first 12 weeks are based on income only. I'm sure there will be allowances for the costs relating to the park home that you mention.
Do you have Power of Attorney so you can deal with all the financial aspects of the sale etc.?
I've been through a few financial assessments for mum and son. They usually want to see evidence for everything, the more prepared you are, the easier it will be.
I'm a great fan of ring binders or lever arch binders.
Bring together all the paperwork, bin any circulars etc., then put everything from the same company if piles, i.e. gas, electric, etc.
Put them in date order, newest one on top. Ditch most things over 2 years old.
Have on file just for the financial assessment. They should write to you before hand telling you what you need to produce.
Copy the latest bank statement, the latest gas, electric, etc. bills, and each cost for the home site, which you've listed.
If there are any savings accounts, ISA's or similar, copy the latest details for these too.
bowlingbun wrote:
Tue Aug 13, 2019 9:58 am
Be sure to contact mum's insurance company and explain that she has moved into residential care, as many policies won't cover a property empty for more than 30 days.
Also ask the neighbours and the park operator to keep an eye on the home. Usually I think they are fairly close knit communities.

I would suggest that you go to the ".gov" site and search for "Charging for Residential Care". Download the document, make a coffee, arm yourself with a highlighter pen, and then work through it. (I prefer paper everything rather than reading documents on a screen).
Hopefully as it's a council run home, they will be easier to deal with.
If I remember rightly, the first 12 weeks are based on income only. I'm sure there will be allowances for the costs relating to the park home that you mention.
Do you have Power of Attorney so you can deal with all the financial aspects of the sale etc.?
I've been through a few financial assessments for mum and son. They usually want to see evidence for everything, the more prepared you are, the easier it will be.
I'm a great fan of ring binders or lever arch binders.
Bring together all the paperwork, bin any circulars etc., then put everything from the same company if piles, i.e. gas, electric, etc.
Put them in date order, newest one on top. Ditch most things over 2 years old.
Have on file just for the financial assessment. They should write to you before hand telling you what you need to produce.
Copy the latest bank statement, the latest gas, electric, etc. bills, and each cost for the home site, which you've listed.
If there are any savings accounts, ISA's or similar, copy the latest details for these too.
Thank you, yes i have that on my list of "to do's" to call the home insurance company- so that will be my next job :-)
yes, i love folders and ring binders too and luckily we do have financial POA and I have been managing all the finances for last couple of years, so i am familiar with everything which goes in and out of her account every month and can get access to everything required for the assessment fairly quickly

yes they are indeed a very close knit retirement community there and most are aware that she has been in hospital and have been looking out for activity at the house etc

i just hope it all gets sorted quickly, as there seems to be some confusion over the fact the park home property is not a "bricks and mortar house" in the usual sense so differing information found online makes me question if the place is considered an asset or a home, with regard to the initial 12 week disregard, that everyone keeps going on about, but I am sure we will get it sorted. and i expect this isn't the first case of this kind that the LA have had to deal with so they should have protocol in place

meanwhile as long as MIL is safe and well that is our main priority !
I reclaimed £8,000 from the LA as they didn't do mum's financial assessment properly!
Make sure they give you a written breakdown of their calculations.

I didn't realise that a "park home" might be classified differently from a bricks and mortar home. Keep us posted on that one.
Otherwise, it sounds like you are brilliantly organised.