Financing a care home concerns - Amber 5

[Amber 5]

Hi,
Feeling the sting of all of this, as I am totally panicking about selling my mum's home in order to pay for care home fees and a move to a more expensive area to be near to me. She will be helped by the local authority, have to pay top up fees, be self-funding after the sale of her house until the money runs out. And then...... That will probably be in a couple of years.
I feel sick right now.
Gill x

 

[JPG1]

Amber/Gill

Don't feel sick. Please don't feel sick.

Just go back to the PCT, the consultant, and ask them to conduct a full assessment for NHS Continuing Care.

They have to do that, if you ask for it.

They cannot refuse.

But they don't have a habit of telling you that you can request a full assessment for Continuing Care, unless you know about it. So just ask them to do it.

Don't ask the Social Worker about it. Ask the PCT. Don't even discuss finances with the Social Worker. It is nothing to do with him/her.

Don't feel sick - feel in control. Fell empowered. Strength. Deep breath. Ask the questions. Don't give any answers until you are happy with the answers that come your way.

Take care,

.

 

[Clive]

Hi Gill

It is not all black.

I made sure we fought for NHS Continuing Care for mum.

It was not just given as a right… as it should be… which is why I am annoyed.

But mum now qualifies for NHS Continuing Care… so all her savings have not gone on Care.

Best wishes

Clive

 

[Amber 5]

At what point did you start applying for Continuing Care Clive? I really don't feel in a strong position at all, I feel extremely worried and upset about not being able to afford where I want Mum to go (and at the moment while she is also accepting of it); I have an Estate Agent going to put her house on the market tomorrow and after todays discussion with the Care Home, think I need to find somewhere cheaper (not as easy as it might sound in Berkshire) and I haven't yet seen another home that I would consider.

Mum is 79, has mixed vascular dementia/alzheimers and still living alone at the moment, but can't go on much longer like that. No 'nursing' needs as such, so I can't see Continuous Care being granted. Can only think I have to look for somewhere cheaper.
Gill x

 

[Clive]

Hi Gill.

The simple answer to your question is I applied for NHS Continuing Care 4 months after mum walked into an EMI Residential Home and 6 months after mum’s Mini Mental test result was 12 and she was taken off Aricept.

I have sent you a PM .

Clive

 

[jenniferpa]

Moderators note: I have moved these posts from another thread with the OP's agreement so that they don't get lost.

Gill - you know my views on this but I'll copy them here as well.

Incidentally, I moved my mother from a cheaper area to a more expensive one when it came to a care home. However, I did check that the care home would accept whatever the payment the LA would make in the event her funds ran out (a difference of £150 a week) so I wouldn't have had to move her. As it happened it wasn't necessary. However, I think (well I know I did) we can get really tied up in knots about what "might" happen. For example say you choose a more expensive home, and your mother's money runs out in a couple of years and the LA won't fund her at that home. By the time that point comes around she may well be eligible for NHS CC, or other options may present themselves. If she has really settled you will have a strong case to make with the LA that even though they may not normally pay whatever the fee is as this home, it is necessary for her emotional well-being that she stay there (and they pay for it).

I suppose what I'm saying is that this isn't cut and dried, and I'd be inclined to choose the best "fit" home now, and deal with the future when it presents itself. At this stage, for example, she may well benefit from a home with an extensive program of activities: 2 years down the road that may not be important at all.

 

[Skye]

Hi Gill

I'd agree with Jennifer.

Provided you can afford the top-up, I'd go for the best available home for your mum's present condition.

There's absolutely no way of knowing how the disease is going to develop, and in my opinion, all we can do is take the best option at the time, and reconsider if circumstances change.

Good luck,

 

[connie]

Hi Gill,

I opted for a local home for Lionel first time around on lots of fronts.

Local to me, easy visiting. Ticked most of the boxes on care (or so I thought). Slightly cheaper than where he had been for respite.

Upshot was home did not work out and we struggled at home for a further 10 months.

When time came again I did not hesitate to pay the higher rate for the better home. His comfort and quality of care outweighed monetary considerations at that time.

We would have had to go to the local authority when his monies ran out, but before then he deteriorated to the level where we were able to obtain NHSCC. Certainly he would not have even been considered when he went in.

I wish you all the very best.

 

[JPG1]

RE posts moved from the other thread

Jennifer,

Would it be possible for you to move also my reply to Gill from the other thread, and insert it after Amber 5's first post on this new thread? It is strangely left on the old thread, confusing anyone who now reads the original thread?

Thank you.

.

 

[jenniferpa]

Not a problem - let me go find it.

Done - sorry about that - I thought I'd got them all. Any I've left out people, let me know.

 

[Margaret W]

Hi Amber

This is exactly as we were with my mum 18 months ago. Little house to sell, care fees to pay. Of course you don't have to sell the house now, you can keep it, rent it out, use the income for the top-up fees, but you will pay tax on the rental profit and will need to manage the letting. We decided we didn't want the hassle and sold it, just before the housing market crashed thank goodness. So mum became totally self-funding. We worried about it, oh how we worried. We decided to take out a plan, to be activated in 3 years, to pay £1,400 a month towards her fees. The plan cost us £55,000 out of the sale of her house. It was a lot of money, but it told us that in 3 years time, it would pay us £1,400 a month for her fees. Meanwhile, we paid the fees from the money from the sale of her house (minus the £55,000 for the insurance plan). We could have taken out other plans, one was for them to pay at once, but that would have cost £120,000, and there were other options to pay after one year, or two years. The amount you pay up front depends on the person's health at the time. Mum appeared to be quite physically fit so the insurance was expensive. But we paid it, and it gave us peace of mind. We worked out that the balance of the house would pay the first three years, and then help for later years. It was all guesswork, as these things are. We had inherited some money from the death of my mother in law, and husband and I agreed that if necessary we would use this money to support mum. If mum had lived for 10 years, we reckon we would have used up all her money from the house. If she lived longer, we would be using the inheritance from my mother in law. We were fortunate in having that to fall back on. As it happens, mum died of pneumonia after 18 months in the care home. We "wasted" the £55,000 on the insurance policy, but that was just bad luck.

It is all guesswork, but I would say go for the best you can manage for the next few years. No-one knows what the future holds. You can get too worked up by thinking ahead. Your mum needs to be in the best place for the next few years. What her condition will be afer that is unknown. Deal with it when it comes. So make our choice now, based on what you know now. Face the future in the future. It is all you can do, love.

Very best wishes

Margaret

 

[1948NHSBaby]

I post this link from a thread in 2003to show that things really have not changed much in over 6 years.

http://forum.alzheimers.org.uk/showthread.php?t=25

Some of the info is out of date, i.e. with restitution, the difference between a house sold to pay for fees then and the market value now is now refundable if maladministration occurred.
Going throught he Ombudsman's redress guidance has put this right for a significant numebr of people.
Over £250m was allowed for PCT's to pay redress which was not ringfenced, the PCT's under used it by over £50m and have not ahd to pay the money back to the DoH.
Small change to the £40m per day it costs us to be in the EU, latest figures issued this week.

It is interesting and sad when looking at old threads from the start of TP to see the same old problem re-occuring time and time again re funding for dementia and overall continuing care, nothing seems to have changed.
Of oourse, information provided then may be out of date, not the actual Coughlan case, that is the law and has never been changed, it actually defines where the lawful limit is for social services involvement anything after that is continuing care, there are no gaps permitted, but the continuing care 'bar' is set too high, creating the 'gap' that is attempted to be filled by rncc, which is actually the limit the social services can purchase within their lawful limits.

Not an answer amber but maybe gives a clear perspective on the unclear situation still in place.

A 'health need, or a primary health need' is not defined anywhere, not is the actual definition of what is social care,but the coughlan high court ruling defined that the nature of pam coughlan's needs was not social care and could not be pruchased or provided by the social services.

 

[Amber 5]

Thank you everyone for your replies. I had thought that mum was going to be able to go to a certain care home which would have been great (I think), but after doing the sums have had to admit that it is just too expensive and even risked ever increasing bills from them. Just wanting the best for my mum! Now I have to seriously look for somewhere else that I can forgive myself for putting her.

I have looked at Annuity possibilities but the lowest offered was ridiculously high. I feel so bad as mum has been talking as if she is going in to the first place soon. My SIL keeps reminding me that we will be able to explain that the new place (when we find one) could be temporary etc. - as long as she accepts it for now.

I am struggling for the moment, I have this constant knot in my stomach, can't eat much etc., wanting to cry all the time. I suppose this will pass once things calm down a bit and I hope for some peace of mind again soon.

It is the worry of financing everything - but also the terrible worry and guilt of moving her into a home. I feel as though I am now back-pedalling and thinking she could manage on her own for longer, but know in my heart that she can't. I need to know that she is keeping safe, clean and occupied.

I seem to be going slightly off thread again! Sorry, but it's good to talk to people who understand.
Hopefully will stop feeling quite so bad soon.
love Gillxxx

 

[jenniferpa]

Your thread Gill - it can wander wherever you want it too.

One thing to remember - most expensive doesn't necessarily mean best. One would like to think that higher fees translate into better paid and trained staff, better facilities, better everything, but that may not be the case. Compassion and caring is really more important than flashy decor.

The stomach knots? I know that feeling all too well. Anxiety, guilt, you name it. I wish I could give you a solution but I can't.

Take care

 

[redmini]

Care home dilemma

Dear Amber

I'm in the same boat as you, as my mum has mixed vascular dementia & Alzheimer's and now I need to find her a home. As in your situation, I live in an area where care is more expensive than in my mother's home district. I know what you mean with the knotted stomach and weepiness.

It does seem so unfair that people with dementia and their families have this dilemma. My sister, who had Down's Syndrome, eventually needed to go into a home. This was automatically paid for by the authorities.

Anyway, I don't have any answers, I'm afraid, but I do appreciate your posting as I've literally stumbled on this website forum and your string. I shall look into the comments about continuing care - tx to the poster.

Hoping that it works out for you.

redmini

PS - I'm going to put that 'counting' quote onto a t-shirt, it's great!

 

[Amber 5]

Thanks Jennifer! Yes I am realising that the 'right' place is of the utmost importance. Stomach knots - no easy answer and I'm sure most of the people on TP will have gone through this or are going through this. I've never experienced anything quite like this before.

Redmini, welcome and sorry to hear that you are in the same boat. I'm sure we'll have similar worries and concerns, but as you will read on here, there are so many others out there too. Lots of luck with your mum. Keep posting.

Just off to look at a Care Home now.
Best Wishes,
Gill x

 

[Sooe]

Hi Gill, Amber and any others still struggling. Felt I just wanted to sympathise with you just now, I still remember the sick feelings of despair and frantic worries, we have just lost my MIL she was first admitted to hospital in Nov and in a care home from there.....no help no funding etc etc we worried and stressed with guilt, we tried to sort house etc etc etc Idea was to rent her little house out BUT and a bit BUT it needed TOTAL renovation before anything at all could be done, more money worries, more guilt, we even looked at the insurance way to go for the future....sadly she had no future or not a long one, we lost her to Pneumonia so so suddenly so so heartbreakingly - All I am trying to say is just STOP everything, I know I know just impossible, but it will help you get your brain into gear, you could be looking at one day, one month, one year or 10 years, as my own Mum used to say 'What will be will be' and no amount of making yourselves ill will change things. Just keep pounding for NHSCC. Live for the day and love for the day, make every single day count and a blessing. My love ang hugs as ever to all who need them. Sooe xxxxxx

 

[fredsnail]

We had to chose a home for Grandad last year and have chosen to rent out his house.

The home we chose was really nicely decorated, no smell, huge ensuite bedrooms (compared to other homes) and all the residents were bright and entertained so it was more like a hotel than a care home.

At the time it was right for Grandad, eased the transition from home to a care home, and was a nice place for us and other visitors to visit him.

However as he deteriorated it became clear that the home couldn't cope with him, it ended with him being sent to A&E by the GP, and when we arrived A&E didn't know why he'd been sent as he was unaccompanied, no drugs sheet had been sent, and Grandad was so confused and unco-operative that he was unable to tell them what was wrong with him, and wouldn't let anyone near him.

The home he is currently in we chose as the best of the only 2 that would have him (once we mentioned that he had dementia and wandered at night the others ran a mile). It would not have been one that we would have chosen if the others had been willing to accept them for various (mainly superficial ) reasons.

However it is a fantastic home, there are always carers around, they can cope with Grandad's tantrums, hallucinations and paranioa and they visited him in hospital on their days off when he fell and broke his hip a few weeks ago. They have kept us informed of changes in drugs and behaviour etc. We know that we have luckily made the right choice for the wrong reasons.

Ironically the cost for both homes are the same, the first home spent money on decor, bigger bedrooms etc, the second spends money on more carers.

It really depends on what stage the person needing care is at - there is no way that Grandad would have accepted going into his current home last September when he first went into a care home, but now he is not so aware of his surroundings he doesn't notice the behaviour or issues of other residents.

Good luck - and we all understand the knots in the stomach

 

[MarkEdge]

Mum is 79, has mixed vascular dementia/alzheimers and still living alone at the moment, but can't go on much longer like that. No 'nursing' needs as such, so I can't see Continuous Care being granted.

Hi Gill

To qualify for Continuing Care, the NHS must look at all needs, not just for 'nursing', i.e. they must consider any need resulting from your Mum's illnesses, irrespective of who delivers that need.

Mark

 

[Amber 5]

Thank you Soooe, Fredsnail and Mark,
It all seemed very overwhelming last week. I am trying to calm down and think straight again. Still going to keep looking at nursing homes, care homes and Very Sheltered Housing possibilities. All I want is to keep mum happy, calm and in a safe environment that she likes. The unknown future is difficult to predict too of course, so trying to choose one place for the rest of her days may not be the right option for right now.
Fees for dementia care seem to be the highest too, which presumably is because of the care they need. What actually happens to people who absolutely cannot pay these astronomical fees - there must be quite a lot of them? Do the Care/Nursing homes negotiate with Social Services and just have to accept a lower amount from Social Services or do Social Services pay more if they really have to?
Regards,
Gill x