Care home fees

[Satterthwaite]

Hi all

My mum has been in a care home for three and a half years but we need to move her as the home are no longer able to meet her needs. She has dementia and we placed her in a home that was supposed to be able to cope with dementia patients.

She is self funding and her capital will run out in about three years at the going rates for decent care homes in her area. She's physically fit and active (she's a pacer) and is in her early 80s so is likely to live for much more than three years.

The problem is the council will only pay around half of what care homes charge so once she runs out of money she will either have to move again to a crap place, or we have to move her now to another crap place. She will have spent almost £300,000 on her care once she runs out of money. This seems brutally unfair.

How on earth do we secure her the care she needs and deserves for the rest of her life? It's not her fault that she doesn't have enough money to pay over a thousand pounds a month for ever. It is a hideous disease and a hideous position for anyone to be in. I just want her safe and cared for but am unable to care for her myself.

Sorry a thousand pounds a week, not a month!

Sorry about your mim. The funding system is awful. Self funders get a raw deal and always pay extra for the same care. Some councils will pay full costs if a resident has been in a particular home for a long time. Has she has a chc.assessment recently if her needs have changed. I would ask for and are you.claiming FNC nursing contributions.hopefully things will change in the future.

I have heard that once funding runs out, they often keep residents in the same home to avoid distress to them.

Btw what’s a pacer please, do you mean she has a pacemaker fitted?

Thanks for responses.

She walks round and round and round the room constantly, pacing round and round. That's what I mean about being a pacer. She gets quite agitated if people get in her way, she's always going somewhere and can't bear to be stopped. She can get quite stroppy if people hold her up.

Does anyone know the going rate for dementia care? It seems to vary and it's hard to tell what is value for money.

I've heard the term FNC for the first time today but she doesn't yet need nursing care. What is chc?

please don't equate higher cost with better services.

chc - clinical health care assessment.

OP, I was in exactly this position. My mum was a pacer too - she wore out do many slippers and kept falling and breaking bones.

Her needs need to be assessed properly; behaviour, psychological, nutritional, continence, cognitive, medication, mobility, communication, emotional, altered states of consciousness, breathing, skin. etc. If she had a medium or high need in more than three areas (I think), then she would be eligible for nursing care not health care. I think £1,000 per month is still pretty standard but may be more if youre in an expensive area (London/South East/ Edinburgh/Cheshire) for example.

I found the best way to assess a home/facility is to visit, speak to staff and residents and people in the community. A good home will smell fresh, staff will be positive and plentiful and management will be active and present, plus there will be lots of engagement with and activities for residents.

www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Ah thank you. She has been recently assessed by a health professional and does doesn't meet their threshold for more support.

It's £1000 or more a WEEK for her care although I've found some homes charge £700 and some charge £1250. I just wondered if one end of he spectrum is more common than the other.

I just want her to be happy but I fear she's lost the ability to be. She's always either cross or anxious

OP I never looked for dementia care
But when I did look at care homes for dad, the cheaper ones were smaller and not offering facilities that he couldn’t have used anyway. Things like that seem to make a big difference. Games room, pah, poor soul could barely get out of bed.

I often think the care in such places might be better actually, because they are not focused on other stuff.

She's been in a small one and we've been advised to move her to a bigger one so she has room to walk. The current provision is so crowded I have to sit on floor next to her when I visit as there aren't enough chairs unless you go into a dim dingy room.

I guess you pay for the space. The home we've seen is lovely but expensive but then what price my mum's happiness?

My Dad is in a smaller (35 bed) nursing home at the lower end of your range (though he does get the funded nursing care element of about £100pw which goes straight to the home - doesn't get CHC). What I like about it is:

All the staff (including the chef and the handyman) know all the residents by name, and the regularly visiting relatives.

The manager and deputy manager are actively involved with residents on a daily basis - they've even done my dad's dressings, and the manager has lent him her personal copy of a local history book.

Getting up and going to bed is at a time of resident's preference

They're bending over backwards to cope with his foibles, for example spending time to help him fill in his own medication sheet to give him confidence that they're giving him all his tablets at the correct dose.

What he doesn't like about it is:

He feels they keep harassing him - he claims that left to himself it takes him 2.5 hours to wash and dress, and if he refuses help they keep coming in to check whether he's finished yet

Some of the staff boss him around - most recently telling him it's not a good idea to keep his juice jug on the floor.

Some of them "treat him like a fool" - sadly he's going to get more of that as his slender grip on reality diminishes.

When he presses his buzzer, someone pops in straight away - but is then likely to say "I'm just dealing with another lady at the moment, I'll be back in a minute" - and then not return for "literally hours" (I suspect 10mins).

Some things are difficult to assess - for example residents are free to wander around the home, which is great, but on the other hand I once had to chivy a resident out of my dad's room.

It would be nice to have a big garden area to walk with him in when I visit, but we can live without. They do have daily activities, but my father hasn't participated yet. There are two lounges with stunning views, but my father spend most of his time in his room (through his choice).

So I suppose what I'm coming down to is what someone said up above - that the important things are the extent to which residents are treated as individuals and their preferences met, and that's more important than the range of facilities that you might get (and pay for) in a larger more expensive home.

Sorry OP, my previous message should have said £1,000 per week so £4,000 per month back in 2009.

Get her into the home home that suits her needs best now.
CHC can and should take into account funding the appropriate care for her. When she runs out.
By which point her needs will be medical not social and thinks lie disruption of a move will definitely count.
Dare I say also that by the time her funding runs out she’s less likely to be able to get enjoyment out of fancy facilities too

My feeling is that she should have the best we can afford and the expensive one we've found is the nicest and not actually the most expensive we've seen. There are only 10 more residents than her current crowded small home but four or five times the space.

And yes, you can't future proof dementia! My mother in law is also in a care home with dementia but she presents in a completely different way to my own mum. She's very happy in her care home but it wold not suit my mum at all!

Thanks all.

What area are you in? The rates vary significantly by area. We are in the Buckinghamshire / Oxfordshire area and dementia care will generally start at £750 per week for Local Authority funded places.

Please don't think that just because a care home is charging more it is providing better care.

With my IFA, we're working out long term care funding for my mother's dementia care. At the moment we're investigating Aviva and Just Retirement.
I'm filling out medical forms, giving info on her conditions, providing her doctors' details, etc.
The company actuaries will then estimate how long they believe she will live and work out how much we need to put in. We invest the cash and they then pay the care home fees for the rest of her life.
Like all insurance, it's a gamble for both parties.
If we chose a plan, put it in place and Mum dies a few months later, there's no refund...
However if she lives longer than her existing cash would currently pay for (5 years), we're quids in.

Ah she's 8 years into dementia, the last 3 needing 24/7 care (not nursing yet) so we can't plan much!

She isn't yet funded by the local authority but will have to be when her money runs out - I predict that she will last longer than her capital.

It's tough

Do you mean her capital will actually run out or do you mean she will drop below the self funding threshold?

Once she only has £23500 left she will be eligible for funding from the local authority. If she is somewhere near that level now then I would get in touch with them and ask them for an assessment (both social care and financial) now.

They will also ensure she is fairly assessed for any funding from health she may be eligible for.

In exactly the same position. Watching with interest (and sympathy). Also reassured to know that My mum is not the only one paying over 1000 per week. I agree that the money doesn’t make for the best care, and that it is about the people, but I found the place where I thought my mum’s needs would be best met and the grimness if some of the places charging less (still £700 p/w plus) was quite staggering - and depressing. It is one of the things that saddened me most about Brexit, apart from the obvious stupidity of it, is that the most pressing social issue of our time - how we find, fund and provide elderly care - has basically been shelved as our politicians and civil servants are engaged elsewhere.

To everyone else going through this, you have my sympathy. It's so very difficult and no one will tell what happens when mum runs out do capital (or it get near the £23k threshold). She has enough left for about three years but no one will tell us what will happen in three years. The council rates are half the care home fees and they also include more state pension (which they don't tell you). So if the council rates are £500 per week, that includes the £120 state pension (I'm not clear on the actual state pension figure).

We're hoping that together with the council funding and mum's pension income that she will have enough to prevent her having to move again (if we're happy with her care, of course) but nobody will say one way or the other. She won't have enough to pay the full amount at that point, but by then she'll have paid over a quarter of a million pounds in fees 😱

God excuse typos, sorry about the lack of sense!

Satterthwaite, sympathies - my mum is in a similar position, although not needing to move, thank God!
She has also been in her Dementia Nursing Home for 3 1/2 years. It is a lot like the one MereDint describes. She is 88 and the GP said that the dementia is likely to progress at a similar rate, so it could be another couple of years or more. I asked the senior nurse there about CHC funding, but she said my mum wouldn't reach the threshold yet as she can still feed herself. She has a wheelchair now and has been doubly incontinent for years...

She is rapidly approaching the 23500 level, so I will contact her LA for a financial and social care assessment.

Is your mum at least receiving Attendance Allowance at the higher level?

If I remember rightly the attendance allowance also gets included in the fee or stopped. The resident is allowed a small amount of pocket money. It all gets complicated and secretive once the money begins to run out. No one will tell you anything until the forms have been filled in and the LA has all the information and can say yes or no. Very frustrating if you want to think ahead when a person first goes into a care home eg will they need to change homes when money runs out, is it close enough to visit a few years down the line once family members begin to get a little older themselves, what happens about hospital appointments, what happens if the person's need change because of dementia/nursing care. If you can start off with a home that it's large enough to have residential and dementia and nursing and will take people whose funding can come from any source then it could help later on. But on day 1 when you don't have all the facts plus you are being pressurised by hospitals and social services to take the first place with a vacancy it is hard

Go yes it's hard. I have discovered this week that it's not only the state pension that goes towards the council funding, it's all her income less, as mentioned, a little pocket money. So I the council will 'fund' to the tune of £500 per week, and mum's income is £450 per week from her pensions and investments, the council will find £50. And the going rate for care homes is at least £1000.

We don't have the luxury of shopping around, we have to move her now. We, her children, also all live over 200 miles away so 'popping in' to see care homes isn't possible, it's has to be a tightly scheduled military operation!

When she first went into a care home in 2016 we selected one which was advertised as dementia specialist, but in practice they're not hence having to move her.

please don't equate higher cost with better services.

^^This with bells on. I work in a Residential Home specialising in dementia (not nursing, just Residential) and our most expensive room is £1000 a week, cheapest shared room around £600. Everybody gets the same treatment. Self funding or not, we don’t care. If I didn’t feel confident putting my loved one into the home I worked at, I wouldn’t be working there. My colleagues are fantastic with hearts of gold ❤️

Billben, so true - the staff in my mum's nursing home are fantastic with all the residents