I woud hate my children to be in the same position.....

Yes, we paid the top up for my mother's care. This was to ensure that she was cared for in the nursing home only 5 minutes walk from our own home.

We wondered how long we'd be able to sustain these payments but as it happened, mum died suddenly after only 6 weeks.

Please do as others suggest, you shouldn't be having to leave yourselves in dire straits

I think going forward the government should make everyone contribute to an insurance policy to pay for their own care if and when they need it. It would be a solution to the huge elderly care funding problem.

Would selling your home fund your own care when that time comes?

Please everyone, take advice from AgeUk, Alzheimer's Society or CAB.

We have just had a continuing care assessment as my mum is leaving hospital we have 7 days to find her somewhere, they have all agreed she needs 24/7 care. She failed the nhs contribution for care she has vascular dementia she cannot walk without support from a carer she is double incontinent she is registered blind and 94. Every where we have looked needs a top up. My hubby got conned into signing top up for his parents. Who 3 years on h ave spent all the money almost from the sale of there property on care fees .so my hubby got a solicitors letter saying when there money runs out he will not be paying the top up. There is no way we can pay for top up for three people we would have to sell our house then how would we pay for our care. We have been looking and honestly some of the cheaper homes are better. Also even though our parents have a lot of problems if there hearts are strong they could go on until they are over 100 and probably outlive us because of the worry we are under.

Having read all the posts, and seen all the advice to stop paying the top up- has anyone actually sat down with the Manager of the Home and said, I'm really sorry but we can longer afford the top up, is there anything you can do? If your relative has been there for a considerable time then there is a possibility that the home will accept the lower rate that S.Services already pay.

Do get research done and ask for advise by an elderly advice bureau or charity My mum had dementia and no money to her name I filled in numerous forms and dementia was then starting to be accepted as a medical problem ( this was seven eight years ago) and after lots of form filling and advice she was awarded the fees and stayed exactly where she was in the same care home
You should not be paying out of your savings or else who will pay for you and what if you didn’t have any savings Presumably your Mum lived and worked in this country during her earlier life

Another point: Alzheimer's does not always attract full NHS funding as someone said upthread. It should but, in mum's case, they wriggled out of it as she was bed ridden and immobile so did not need full time care. We decided to fight it but the Home said we wouldn't win as there were lots of precedents. Mum was obviously near the end of her lif (or so we thought!!) so we decided it was not a fight worth fighting.

Silverling47 How kind and caring you and your family are and it is sad to hear of your difficulties and the way you have been treated. As other Gransnet members have already mentioned, there are several avenues to explore. My dear m was in a residential home for her physical ailments and we had no spare money in our family to help with fees mainly due to my husband not working from 49 due to serious health problems. My parents had no property so apart from my late f's pension, she was fully state funded. We had moved her three times over a five year period and her remaining days were spent in a lovely private home with very good care. This was 20 years ago so I realise the rules have changed since. Very best of luck to you and I'm sure you will find assistance out there.

Silverlining 47
DH at seventy two suffered Vascular Dementia.In the last two years of his life he was given state funded social care at home this being in the form of a daily morning shower, dressing etc , he was a large man it took two . Should he wake in the night I had to make sure he was able to get to the toilet thankfully it was en suite. I did not want him to go fulltime care I know were it reversed he would have been the same for me . It was not an easy job but on three occasions in his last two years I was offered respite for DH.Two weeks at a time .I was grateful to be able to have a full nights sleep. The care homes, three involved , were privately owned although there were MANY residents subsidised by the state. Each room was ensuite.Beautiful gardens, two of the homes had sea views, where residents could sit in warm weather. There were both social care and private residents the latter would pay full price for the care. The residents without their own home or savings would be state funded.. Due to DH having savings and his own property he had to pay 75% towards the cost of these two week at a time residential care. I did not object I was glad to have time for myself
A person can work all their life, spend all their earnings emptying their bank account and the state will look after them. OR have some like yourself covering the costs maybe putting themselves without. You did what was best for her.Your MIL having no money of her own will I am sure qualify for state funding. You should not hesitate in looking into this it does not mean you are uncaring but as you are aware must now be thinking of your own future..

You have already been offered lots of good advice regarding your MIL's care and expenses. May I suggest that perhaps you and your DH should look into your own situation?

Are you quite sure you are both receiving the pensions and allowances you are entitled to? You say, understandably enough, that you do not want your children to been in a similar situation one day, so perhaps you need to look into your own financial situation.

It is one thing to feel morally responsible for care of the elderly, quite another to finance it.

If you run out of money for your own care, would you expect your family to bear the cost?

Make sure you claim everything that she is due; the council usually pay for care if the person has no means. Get in touch with social services, Age UK (they really are very helpful).

I had three years of stress worrying about this before Mum ran out of money. SS were unhelpful to say the least. The home advised me to get the Alzheimer's diagnosis before a second SS assessment, armed with that they agreed to pay but the home good up the rest as it is a charity. If your mum has been there a long time, I would ask for a meeting with the home and explain you can't afford the top up fees. They may help.

Silver lining. It is a very sad situation. I would make sure that the nursing home is aware that you would not wish her to be resuscitated and that if she is unwell you would wish her not to be admitted to hospital but kept comfortable in the home. Obviously, only if that is indeed the case. The homes like people to go off to hospital as it decreases their care burden but it is distressing for the person concerned. You may have to speak to the doctor at the home and put it in writing that this is your wish.. If necessary you could pay for a private carers to be with your mother in the home to supplement the care for the last days..
With regard to funding, if you don't want to move her then you can talk about Continuing care where it is funded by the NHS but you may have to bring in solicitors as the CCGs will avoid this if they can.
I wish you well, it's a very difficult time.

I do really think that SSD would struggle to find a place for your MIL if you withdrew paying the top-up. I am afraid that many people do not do the research before agreeing to this - entirely reasonably as they should be able to trust the LA to provide all the facts, rather than bamboozle them into payments that they are not obliged to make.

In my area all council homes closed at about the time I retired (20 years ago) so I doubt whether there are still any around. But - I do have to say that, as a SW, I always opted for council homes first as they were so much better than the private ones - the staff were properly trained and supported, and the homes were properly checked at regular intervals.

There is loads of info out there from all the organisations mentioned above. Arm yourself with this info and then talk to the family - then beard the LA in their den!

That's awful for you. Emotional blackmail is so effective, isn't it? When MIL had to go in a home her eldest son took over the finances and he's as mean as hell. SS had quite a job trying to get him to pay - easier than getting blood out of a stone. He paid the absolute minimum necessary and played his cards very close to his chest iyswim. I expect you're too nice to behave like that.

I think there are very few council run homes left. The council negotiate a much reduced rate for the rooms they use. There is a feeling that privately paying residents are subsidising the council one - denied of course.

The top-up has to be paid by someone who is NOT the resident.

If the OP'S Mil is fully funded then I imagine her pension has been taken away and she will get the 'allowance'.

I would talk to AgeUk or the Alzheimer's Society to be armed with the facts before you talk to your Dh and sil.

Sarahellenwhitney, MiL was assessed by social services who said that she needed to be cared for in a carehome.

Thanks for your kind message newnanny. It came in after I started my previous reply.

Thanks everyone. Your posts nearly all say we do not have to pay the top up fee and I am really surprised.
To clarify, my MiL has no money at all. She rented a council flat and with the few savings she had she paid the top up fee herself for one year
Tonkatol, I think you have summed up the situation very well.
Nemosmum, you also sum up the situation I have with persuading my husband and SiL.
In fact, writing this post makes me realise how little influence I seem to have. Both are kind people but I think are becoming very stressed by the increasing dementia (MiL now violent and swearing) and not seeing the bigger picture that affects both families in the longer term. Such fragile paths to tread in any conversation at the moment.

Silver lining you really need to talk to your dh about the amount of money you are paying towards mil care. Gently point out it is your money too and you were hoping to spend some in retirement enjoying each others company but he is jeopardising that. Ask him what happens if mil lives for another 10 years. Will he be able to pay for this long? It must be very hard because you will come across as the mean one but because he and Sil are so emotionally involved they are probably unable to remain objective. We are not heartless on GN but really almost everyone thinks the current situation is intolerable. Your dh is basically sacrifising your joint future for his dm who would probably be upset if she understood. Also you have dc to consider. You do need to talk to dh.

Hi I am a carer for my 76 year old brother this site is very good and has given me a lot of advice
www.carersuk.org/

This is a dreadful situation but you DO NOT HAVE TO PAY. Fight it all the way - you might need care for yourself in later years.

Mum's contribution to the fees were paid directly from her state pension and she was left with £23 per week (at that time) for toiletries etc.

The home my mum was in had both private and council residents.
We could have paid top ups for a bigger room with en suite but were happy with the room she had. The care, food and facilities were the same for all residents.
What benifits is MiL receiving from your payments ?