Home Help/care

[guessagain]

So both parents have rapidly declined in health, with dementia since start of this year. They deteriorated so very quickly it’s astonishing. They currently live alone, independently. They are both mobile, but quite unsteady on their feet. Dad more confused than mum. It’s been an absolute nightmare as myself and my siblings don’t live close by to our parents.

I’ve been in touch with SS & a care assessment was done. No POA in place. I’m aware they have some savings but the exact amount I don’t know. If I or my siblings mention POA to mum she just says they are fine & no no, don’t need it. So that’s it. She & dad have always been very private about finances.

They’ve very recently had short term active recovery care but now long term care in the home has been placed. Nothing about costs or anything has been mentioned so I’m not sure how it works. Do social just access their accounts? Mum does have her lucid moments. She’ll say that they (her and dad) don’t need help at all (they very clearly do) and can manage and because there is no formal diagnosis of dementia, I’ve been told capacity is assumed. If mum does and can understand that care will cost, she’ll refuse it. What happens then? The thing is she doesn’t have capacity 95% of the time, except when it comes to money!

I’m sorry if I’ve not made much sense but I feel like I’ve lost my own mind over the last several weeks, it’s been a huge mental strain. Seeing them like this is just awful. Them living a good 30 miles away doesn’t help and having to go to work everyday & fit everything in with teens & family life.

My mum had to complete a financial assessment for her care but it was capped at £ 100 per week which covered the two visits she had and would not have increased if she had had more. I don't know if every local authority works in the same way, plus we are in Wales, not every part of the UK is the same.

My mum resented every penny she spent on the carers - in fact I paid half of the cost - because I needed the help.

Ithinkisaw….thank you for your reply. I can’t see mum and dad completing a financial assessment, she won’t even let me or my siblings look at bank statements or anything! I’m wondering if SS just access their accounts without telling us or them to see what they have. We’re not in a position to pay towards anything & I don’t think my siblings are either. It’s interesting to know it might be able to be capped as well.

Mum had no savings but she did have a couple of additional pensions which took her over the limit so she had to contribute but even at £ 100 a week it was cheaper than if she had had to employ someone privately.

I don't have PoA but I do have access to mum's bank accounts because she has struggled to see the screen and deal with online banking so I was able to pay from her account.

Mum's issue so much the money (although she resented it) - her biggest issue with having carers is that she didn't need them. If I wasn't so lazy and a bit more helpful she could have carried on without them and not had to pay a penny! For me it was worth every penny to be able to get up and find her dressed, fed and sitting in her armchair and to be able to leave her at 9 p.m. knowing she would be in bed and safe.

Through the day of course I spent hours with her, took her to the toilet several times (half an hour at a time), turned over the tv, helped her use the phone, etc etc. But no, we didn't need carers, it was just me being lazy!

Do not want to derail but you know that is not true @IthinkIsawahairbrushbackthere You know you did the most amazing amount for her. Just wanted to remind you of that!

@guessagain I really feel for you - both parents with dementia is a huge burden on family members irrespective of your situation. I have no help to offer just sympathy with the whole elderly relatives being allowed to make their own independent decisions in these situations.

Do they have attendance allowance? Non means tested and could help fund care. Worth applying for- get postal forms which will be date stamped and get help completing- age uk/ cab/ carers uk.
Might help dm accept care.

Thank you @SuperDiaperBaby. This corner of Mumsnet has been an amazing source of support.

SS cannot access your parent's accounts without their agreement. They don't have the means to check that information elsewhere.

They don't assume capacity, but the test is more an ongoing observation than a traditional 'can you answer these questions' scenario.

The thing is she doesn’t have capacity 95% of the time, except when it comes to money!

Capacity is decision and time specific, so it sounds like she would have capacity in this respect.

Okay so my mum is refusing to pay for any help, saying she doesn’t need it, that they can manage & doesn’t want to pay for any help.
What do we do now? Dsis says to immediately notify social worker & instruct home help to stop. Yet active recovery said under no circumstances can home help stop, they need the care.

Next stop GP. It's very likely your parents won't think they have a memory problem - even if they get a diagnosis they might not remember it - because they forget what they can't do.

So in their minds if something goes wrong, it couldn't possibly be their fault, it will be because of something else, some of the excuses may be quite mad and go into paranoia or just plain defensiveness.

You will need to go with them (or be on the phone) with the GP otherwise they will just report everything is fine.

On the topic of capacity - it is decision specific so just because they can decide one thing eg what they want to eat that day, it doesn't mean they can decide another thing eg whether to remortgage the house.

There are probably a couple of threads in the tangled ball that you can tug at, to see what unravels.

Firstly - diagnosis of what's going on. Ideally a visit to to GP or, failing that, you laying out your concerns to their GP and asking their advice on how to tackle it. Maybe they can 'follow up' on whatever led to the recovery care being put in place, and organising the memory tests etc as part of that. If your parents have had emergency care put in place temporarily, they must have got into a bad way. What led to the recovery care being put in place? I'm guessing that it was bad - but not so bad as to be 'the' crisis that pushes them into accepting the situation. Why haven't they been diagnosed so far?

Do you know who the social worker is and can you contact them? If only to get an idea whether the financial assessment has been done, and to get an idea of what the SW thinks about their situation.

At some point, if they continue to refuse help, then a bigger crisis will come along which will force the issue. Sadly this is often what needs to happen before they will accept that they need care.