Mum 93, diagnosed with Alzhimers 10 years ago. Lived with me for 8 years prior going into a care home a year ago. Her funds which I anticipated would last about 18 months have gone quicker than I had hoped. I was near breaking point when Mum went into the care home as she was getting me up 8 times a night refused to have carers or go to respite. I was and still am caring for my disabled daughter who is 27, wheelchair reliant with communication difficulties and requires all personal care.
Fortunately Mum went into home willingly and altho asked how long she would be there seems to accept it is now permanent.
I have approached local authority to have care and financial assessment done but they are really dragging their heels. The home have reassured me that this is usual but I can barely sleep thinking about it and worried that they may even say she is not eligible for assistance if she does not meet their criteria. She has the Alzheimers diagnosis but seems so much better in the home- she still gets up several times in the night for the toilet but they can deal with it there. It was killing me when I then had to care for my daughter during the day with no sleep at night.
I can not go back to caring for them both and I am hoping they will take this into account when doing the assessment. I don’t want Mum moved and am happy to pay top up fees as long as they fund too.
I am just worried if they decide that they assess Mum as being able to cope in a flat with 4 visits a day- it would destroy both of us.
Hi Diane,
Just a quick answer as I need to go to bed, others will be along with more advice t’row.
It needs to be firmly stated that your Mum doesn’t have funds, without the care home she would be homeless, she has no one able to care for her, plus she has a progressive disease. She has a very strong case. Do NOT offer to pay a top up. Does her care home have fully funded residents as well as self finders?
As soon as mum’s savings get below about £23,000 then Social Services have to contribute towards her care. At that point you should stop paying until they have done a formal financial assessment, looking at all her income and savings.
If you are already below that point, stop paying completely, until they have done this. Write to the Director of Social Serrvices and make a formal complaint about his department’s failure to “act in a timely fashion” and ask for URGENT action to be taken.
Can I also check that she has been receiving Attendance Allowance whilst self funding?
There is no need to feel guilty about mum being in a home because you could not care for her any longer. Many of us here, including me, have had to accept that residential care was the only option left.
My son is now 40, he was brain damaged at birth, can’t read and write, but is fit and well. Are you getting enough support for your daughter? Have you made any plans for her future when you cannot care for her any more?
I agree with the others - DO NOT agree to pay the top up. Now is the time to enlist the help of the Care Home Manager - after all, they have a vested interest as they want their money! They will also have come across this many times before. The local authority will have a maximum that they are prepared to pay. The Care Home may well know how much this is. Repeat in the mirror several times a day “Mum’s needs are more than I can meet; she needs residential care”. You cannot be forced to care. A threat to involve the local paper and your MP may also help in your discussions with the local authority.
Incidentally, I did this battle myself and it took over six months. Mum is safe and cared for where she is which is the good news. The money will sort itself out in time. In my own case mum died before we finalised the finances. It may also be worth contacting Carers UK Adviceline for confidential advice re your particular case.
Social Services may be less than honest about fees, so do not sign ANYTHING at all about fees.
I once reclaimed £8,000 on behalf of my mum as I’d been told that I’d signed something when I knew I hadn’t.
I have studied Business Law, Contract Law etc. and can be a formidable advocate for my family when necessary!
The rules state that Social Services can ONLY consider mum’s financial situation when calculating financial contribution towards care home fees.
It is UNLAWFUL to ask relatives to pay top ups.
I would suggest using email rather than phone, wherever possible, then there can be no dispute about what was said.
If you google “Charging for Residential Care” there is lots more information.
Many thanks to you all for taking the time to respond with your helpful advice.
I know I have no legal responsibility to provide care and that ultimately if I refuse to do it they have to find a solution but it is very hard, if not impossible to suddenly stand back completely impassive and disinterested in what will be the final years of someone who was a good, loving, fun Mum. I know I can’t do it but that doesn’t mean I am willing to compromise on Mum’s happiness, comfort and well being.
Also I don’t understand the situation with top ups. The home we chose was because we heard good things about it, they were very welcoming and open to several visits, I hung around the car park accosting relatives to ask what they thought of the place and heard nothing but good. This was all prior to her going in. It also happened to be the nearest to me and at £1000 pw was the average price for our area in London. The local authority ceiling for assistance is £650pw so the top up would be impossible to meet although the care home manager has intimated that this could be negotiated as its in no one’s interest for Mum to move and this is absolutely true.
I really don’t want Mum to be moved. She has only been out of the home twice in a year. The upheaval would be too much for her. I know all your advice comes from your experiences and it means so much to be able to share these worries with people who have walked in the same shoes. Thank you
Diane
You most certainly DO NOT stand back “impassive and disnterested”.Instead you have to become passionate , dedicated and assertive to make sure Mums rights and her and your finances are protected
The difference between what the Council will pay, and what the Home wants is now entirely a matter between them, assuming Mum is now below the magic £23,250 figure.
Do NOT agree to a top up. Read page 24 of the document from age UK linked above.
In London, the council will not be able to find a Home that costs their figure and you have good arguements to put why Mum should remain there. Both the Council and the Home know this and between them will keep playing on your conscience ( and good will and ignorance of the system) to get what they can out of you. Do NOT let them
Think of it this way, for every week Mum has been there she has been subsiding a Council funded person by £400 a week. For all her life she and Dad paid their taxes and NI exactly for this reason, to now be helped when she needs it She has already paid more than most.
(I speak as one with a self funding parent, but we are lucky, her fees are still being met from income, her home rents for huge sum)
You are a kind and loving daughter, don’t go impoverishing yourself. Even £300 a week top up amounts to £78,000 over 5 years. My Mum is 96 and by no means the youngest in her Home. My neighbours husband spent 15 years in a care home with sever dementia. How long may your Mum have? No one knows, but you have to be careful what you sign up for, your daughter needs you and your money more
Are you talking about the Age UK fact sheet 10? That covers all care, not just nursing. Tomorrow, make a coffee, take 30 minutes and read and re-read it again It will save you thousands
You also need to be aware that there is a considerable difference between what a residential home can charge a self-funder and what it will be paid by the local authority - for exactly the same room!
It’s now generally accepted that self-funders pay a premium of around 30% which is used by the care home to subsidise the very low rates they receive for LA-funded residents.
In mum’s home she paid about £1,000 but the CHC rate was about £700.
There was a notice in the Nurses Station that said the only difference was that self funders had fresh towels every day!!!
Diane I do understand how you feel. My Mum has been in a lovely care home for 16 months and they are superb. Prior to that she was in another place for 10 months. We had to sell her home of 65 years to fund all this care and this money is rapidly diminishing as she had no other savings.
I dread to think what is going to happen when her money runs out as she is happy there and gets excellent care. She is nearly 95. She sounds similar to your Mum in that they reckon she doesn’t need nursing care.
My thoughts are with you and sorry I can’t offer any good tips.