Please help. Desperate. Don't know what to do?

[jugglingeverything]

My mum has severe dementia and is physical disabled. In July she had a bad fall, ended up in hospital for 2 weeks and when she got home was totally unmanageable, pressing her call bell 90 times in one morning and shouting constantly. She had to go back into hospital as there was nowhere else to go and was stuck there, drugged on a general ward to keep her quiet for 2 months while they sorted out the nursing care assessment. There were no nursing beds available anywhere in the county. I tried everywhere. Then one finally came up, not far from my home, but expensive. I grabbed it. I felt we had no choice. With hindsight I should have refused and left her in hospital I think!

Mum has a decent work pension and because of that does not qualify for any help with the fees. She only had a small amount of cash savings plus a bit of money in a pot for her "care at home" fund from the LA. I worked madly to get her flat cleared and on the market. It went on mid-November but has not had a single viewing yet. I doubt it will sell til spring. Its a lovely flat but specialist for older people so limited market.

I was told to apply for attendance allowance. Waited 8 weeks still nothing. Phoned to chase and was told should have applied for Disabled Living Allowance instead. So have just reapplied for that. They couldn't give me a time frame for how long it will take to process.

Meanwhile her funds have gone on care and renovating the flat. So I've been dipping into the "care fund" to pay for her care. The local authority are now threatening legal action if I don't pay that money back.

I just don't know how to pay for everything. I am a single mum struggling to keep my own home going and working extra shifts to keep afloat. There is nothing spare for my mum. Her pension covers half the cost of her care so we are £2000 short every month. I tried to get the local authority to use her flat as security and take over the care costs until the flat sells but they insist they don't do that for 3rd party top-ups. I still have bills going through for her flat too.

How on earth are we meant to cover the costs in the short-term? The LA insist it was my choice to put her in that home so its my problem. The care home have been supportive and agreed not to take next months fee until the LA sort things out but the LA have said there is nothing to sort out! Even if the DLA comes through it will not cover the care.

I didn't ask for mum to get dementia! I didn't ask for power of attorney. I struggle organizing my own life let alone someone else's! I have no other family to help me work out what to do. I've lost my mum and I feel totally desperate. Best advice the LA could give me was "Just be glad she's not got that long to live. If she was younger you'd be in a much worse position".

[pithivier]

I think that relatives are often taken advantage of, in this way. You are desperate to help a relative and find that the LA do not fully explain the implications of putting a relative into private care.

I would ring AGEUK for advice. They seem to have so much knowledge. I am so sorry you have this stress.

[ggirl]

So sorry you are going through this ..it sounds so stressful.

Makes you wonder what they would do if your mother had no relatives??

They would have to use her flat , I think the LA in my area will pay the bills for a certain amount of time until the house sells but I am not aware of the details.
Citizens advice and AgeUK as poster suggested.
Hope you get some advice .

[Lanaorana1]

Age UK are brilliant, ring their trained advisers. The other thing is that you have 3/6 months or so legally (i think) before the LA start hassling you for cash.

Councils can be v aggressive, so tell them to behave and stop being so tricky. They have to ask you for the money, but they can accept a timetable for payment. Suggest they start being a little bit reasonable.

How awful for you.

[EweAreHere]

Can you not tell the LA you're going to put her back in hospital then until they can provide appropriate care for her?

If that's an option, I would take it asap.

Do NOT dip in your own funds.

[Miffer]

No, it wasn't your choice. It was your ONLY option.


If the local authority did not offer your Mother a suitable placement without a top up then you need to put this in writing (preferably an email) right away. Ring them too, ask to speak to the team manager or senior/team leader. Don't be put off. Pester. Keep repeating that this was not your choice, your Mother was not offered an alternative.

If they are so worried about your mismanaging your Mums money why have they not sought to strip you of LPA? One option would be to offer to relinquish LPA (finances) and support the LA in an application for deputyship. Then they can sort out the money situation.

Tell them this is safeguarding, your Mum, who lacks capacity is at risk of losing her home and not having her care needs met because they wont support you in finding an alternative.

Meanwhile her funds have gone on care and renovating the flat. So I've been dipping into the "care fund" to pay for her care. The local authority are now threatening legal action if I don't pay that money back.

I'm a bit confused about this, what do you mean "care fund"? If you used it to pay for care there should be no issue.

Can you not tell the LA you're going to put her back in hospital then until they can provide appropriate care for her?

If that's an option, I would take it asap.

Her Mum isn't an object that can be "put" somewhere. Hospital isn't a warehouse. Being in hospital carries risks especially for already vulnerable people.

[jugglingeverything]

Thank-you all. When mum was at home she had a direct payment scheme that paid towards her care needs. This money went into a separate bank account and I then paid the carers from it. They'd worked out what she was entitled to but there was always a bit left over and this built up. They also continued to pay into it for the time she was in hospital. It was only when she had the financial review that I was told this money would need to be paid back. However because there is insufficuent funds in her current account to pay the carehome fees I transferred some of it across to cover this. Thats what they are demanding back which is fair enough and I will pay - once I have the means to pay for her care. I have no problem with the idea that the money from her flat should pay for her care. However until the flat sells we don't have that money. The LA have refused to budge on the idea of "deferred payment" using the flat saying that they don't do this for 3rd party top-ups. I don't really want to hand over her LPA to them as they see so unreasonable and at the end of the day mum assigned that job to me. I feel I'm letting her down now with all this mess. AgeUK just sent me all their standard leaflets but it doesn't really help. I just have to keep using the care fund money and hope they let that slide a few more months. I really can't see what else to do. But it does seem so unfair when there are so few options available. I couldn't bear for her to go back to the hospital, it was awful there and so far away and I never got to see her as the visiting times didn't fit with my shift patterns. Also I don't think they would take her without a medical reason. It just makes me so sad and angry that such a proud, intelligent and competent person can be reduced to this. If I ever have the slightest hint that I will end up in a similar position, knowing what I know now, then I really think I would do something drastic rather than leaving my own kids to face this.

[Artus]

You may get some useful advice on the Alzheimers Society Forum. Its called Talking point

forum.alzheimers.org.uk/forumdisplay.php?70-I-care-for-a-person-with-dementia

[chocolatewine]

I'm sorry you and your mum are going through this. We had a related situation where my father was in hospital and they told us to find a care home, which we did very quickly. Luckily my father had a lot of savings but his money is running out now.

I found these two sites very helpful with information.

caretobedifferent.co.uk/

www.beaconchc.co.uk/

I also am pretty sure that we should not have moved him from hospital until AFTER he had been assessed for NHS continuing healthcare, but nobody tells you that - it's harder to access once the elderly person has been admitted to a care facility.

[pithivier]

I would suggest that you contact your local MP. I have twice emailed my MP on different matters and they have stepped in with the LA to get the matters resolved.

When I worked in an LA, any referral from an MP was instantly dealt with.
Good luck.

[Miffer]

The Local Authority are highly unlikely to agree to pay the top up.

I also think you will only have limited luck with your MP. The thing is every other person in that home (and plenty of others in the constituency) will also pay a top up. What this may allow you to do is sort out a compromise for the short term but the only realistic long term solution is either getting the care home to waive the fee or finding an alternative home.

That said the LA has a duty to ensure your Mother has affordable care available to her. I said it in an earlier post but it's worth repeating- You need to ring them and tell them this. You need to ask them where the affordable alternative is and tell them you were never offered one.

[FauxFox]

There are companies that will buy your house for cash within a week - obviously they will pay less than you would get selling traditionally but in your situation it may be worth investigating
www.moneyadviceservice.org.uk/en/articles/quick-house-sales

[Freekah]

Which authority are you in ?
My LA agree a deferred payment agreement which included a top up for us.

[Miffer]

My LA agree a deferred payment agreement which included a top up for us.

That's interesting can you clarify-

Did the person have capacity around finances? Was there an alternative? Was it specialist care?

[Freekah]

No our relative did not have capacity around finances .
We (the family ) agreed a £125 a week 3 rd party top up and the rest of the fee was under a deferred payment agreement .
We asked if all the fee could be under deferred payment as it was a stretch. The LA agreed.
The LA payed the 1 st 12 weeks under a disregard whilst the financial assessments were being done also.

[ggirl]

Freekah the same happens in our local LA

also Continuing healthcare can be applied for anytime ,you don't have to be in a hospital.
starts with a checklist
if she is in a nursing home this has probably already been done as part of the NHS Funded Nursing Care Assessment

[Starla268]

Hi OP,
Sorry that you are in this situation, just wanted to suggest making contact with the Admiral Nursing Direct helpline: it's staffed by specialist dementia nurses who have lots of experience with situations like this and will be able to give you tailored advice. The number is. 0800 888 6778 and the website link is here: www.dementiauk.org/how-we-help/admiral-nursing-direct/

They are really helpful and knowledgeable xx

[Kenworthington]

So look up the continuing healthcare funding. I found out about it and asked my dads social worked about it. I don't think they kind of offer it. It's paying for all my dads care . However he was very aggressive and unpredictable with his dementia. It's managed with a plethora of drugs now. But hopefully he will I assume continue to receive it. It's a mammoth assessment but please ask either your social worker if you have one or the care home. They will know how to sort it out for you. It's not means tested. It's based on 'need of care. Hope that's some help

[pithivier]

When I suggested the OP contact her MP, it was not because I don't think she shoud have to pay. I think that the callous way the LA has behaved is appalling. Most LAs give people time to pay but these people seem to be bullying a very vulnerable person.

[jugglingeverything]

Just an update. Got the most amazing phonecall today. LA have done a complete about turn! Best Christmas present ever! The lady I spoke to last week called back to say she'd felt really bad so gone further up the command chain. They have agreed to a deferral against the flat sale and are also going to include in this the outstanding money on the carers fund so I don't need to worry about that either. Am so relieved. I feel my heart rate has come down by about 100bpm and the weight off my shoulders means I've grown by about 3 feet. Basically they've told me to pay what I can afford and anything else will go will be taken once the flat sells. I still think its terrible the stress thats been involved in coming this far. Folk shouldn't have to go through this but at least the pressure is now off :) Thank-you all for your support x

[EweAreHere]

Very pleased and relieved for you, OP.

Enjoy your holidays. x

[FauxFox]

Great news - so pleased for you

[ggirl]

wonderful news
have a happy xmas

[jugglingeverything]

Just thought I would update on our saga!

The LA sent out the forms for the deferral which arrived just before Christmas. I was working through Christmas but the lady wasn't due back in until the 17th January so figured I would have time to sort it out.

Then on the 3rd January mum died.

I am so grateful to the carehome who stopped the GP sending her into hospital for a blood transfusion that would have distressed her and done nothing to help. I was asleep after a night shift and woke to a string of calls from the GP. I went in to see mum and then a few hours later they called me back. I sat with her for 3 hours then I opened the window as it was so hot. As I took her hand again her breathing changed and she just slipped away. It was like a bird taking flight through the open window. I had thought I would be relieved when release finally came for her and I am but it still leaves and enormous hole and I feel like I am grieving all over again. Its really hit me hard.

So I emailed the lady who was sorting the deferral to explain what had happened. Yesterday I got a reply. "We are very sorry for your loss. Please send 3 yrs of invoices and statements at your earliest convenience and solicitors details". I am so shocked and appalled. We've not even had the funeral yet. There is a small amount of cash but it wont cover the funeral, last months care home bill and the money they are wanting back. And why do they want 3 years? Are they questioning what they paid before. Could they demand more? I didn't sleep last night. I want answers but I cant face speaking to anyone, especially when they were so awful to me before. I'm off work and struggling to function at the moment. But I'm meant to go through all her disorganized boxes of paperwork that I've still not had chance to sort through since emptying the flat. I really cant believe the way they treat people. :( Sorry not really after answers, just needed to vent.