Sorting out care for mum - where to start?

[Aliensrus]

Hello, please could someone give me an idea of how to put in place care for my mum either in her home or in some sort of assisted living?
Background - she’s 74 and was ok physically until 3 years when her back went and she has osteoporosis in her spine so is now permanently hunched over. She relies on morphine for pain, has bowel issues and is incontinent at night, and is housebound.
Mentally she is kind of OK - sometimes away with the fairies but this could just be due to the pain. My brother lives near her (I live several hours away) and has been doing her daily grocery shopping, laundry and stripping her bed when wet.
I got her a cleaner already and she has been assessed by social services twice but both times she sent them away (she asked me to sort it then changed her mind).
My brother has now said he’s not doing it anymore (understandably, I have tried to help him before but he’s an angry man anyway so had to cut contact).
I now need to sort something out to cover his chores - I don’t know if I should try to get her into some kind of assisted accommodation (if so, how would I make that happen), or whether to hire private carers to do this stuff. I got a sense from social services last time that they prefer people to stay in their home with private carers but I don’t know if that’s best for mum?
It’s all more complicated as she’s a bit stubborn and I can’t get the truth out of her, and my brother is too angry and abusive to talk to (but not to her, or so she says).
Would it be worth getting social services involved again? I just don’t know where to start.
On the finance side, she has only the state pension but gets the full attendance allowance and I am sorting out council support for her rent and council tax, so hopefully enough to fund private care at home but not masses of cash sloshing around.
Sorry for waffling and thanks in advance

How is her mental capacity? Because if she has capacity to understand the consequences and she's turning social services away there's nothing you can do.

If she's only got state pension and Attendance Allowance with no savings (?) then how will she afford care as agencies round here (Mids) are £20ph at least. That's if she even agrees to it. If it's via social services and she's low income no savings then it will be no cost of v low cost.

A long frank talk is needed with her I think.

You can't just move her into somewhere - she's allowed to say no.

Her mental capacity is OK in the sense that she’s not lost her marbles, but her decision making isn’t great, she seems very forgetful and she doesn’t always tell the truth. She mainly wants to do her crossword and not speak to me when I visit. She’s a bit like a naughty child if that makes sense - she wasn’t like that when she was younger. But from a medical perspective I think she does have capacity even if her thought process is questionable. It does make having a frank convo quite hard/impossible though.

That’s interesting about social services and funding - last year they assessed her and said she would have to pay for her home care herself but she had just over £23k then, and now she has less than £15k, so maybe that will make a difference and they will help now with funding - thank you @greenzeppelin

she had just over £23k then, and now she has less than £15k.

Do you know where the 8k has gone OP. That's a lot of savings to get through in a year.

Hi @BunnyRuddington,
She had a shortfall anyway as with renting privately, council tax, electricity, cigarettes @ £200p/m (she won’t quit) and tenaladies @£100p/m (I know we could get free incontinence pads from the NHS but she has rejected them too), her pension and attendance allowance didn’t cover her outgoings. She is also spending £800 a month on groceries which I suspect is down to my brother buying himself cases of lager and other stuff (awful but she won’t hear of doing anything about it).
I’ve spoken to her and she’s wetting the bed every night but she says it’s fine as it dries by evening which is really not great but I’ve tried everything to help and it’s a no-go. She’s insisting she needs a laptop to order her own groceries but she can’t use the internet and multiple attempts to help have failed. And she hasn’t been able to wash for the last month but won’t accept personal care. I just don’t know where to start with this.

It sounds like such a difficult situation.

Has she been assessed by the GP for capacity?

If she is using heavy duty opiate pain relief she will be confused in her thinking. Her mental competency might well be impaired,
Social Services should check this out.

Hi @334bu, that’s a great point and this wasn’t flagged last time she had a social services assessment last year. The problem is she doesn’t want to talk about it as she fears they might withdraw it (they did once already) but her pain is not manageable in any other way.

@BunnyRuddington she has been assessed a couple of years ago but it seems the bar for capacity is quite low. She knows what she wants in general terms but is not good on detail e.g. she wants her groceries but she can’t tell me which ones she has so can’t order online for her (possibly due to morphine as mentioned).

Anyway I have requested another care assessment to see if that can help, and maybe social services can figure out where all her cash is going. Thanks everyone for suggestions so far.

Anyway I have requested another care assessment to see if that can help, and maybe social services can figure out where all her cash is going. Thanks everyone for suggestions so far

If you can, d be there before the SW arrives so that she doesn't turn them away.

Another care assessment is a good idea but you'll have to push for everything. Make sure you don't tidy up before they come, even if your mum asks you too. They need to know how your mum is really coping. If she hasn't shopped leave her fridge empty etc. My sister was on heavy medication because of MS and she was often quite irrational.

I think you need to consider asking SW to undertake a mental capacity assessment. This won't be done automatically but you could highlight before the visit to the SW your concerns regarding capacity to make decisions around:

1. Ability to look after herself such bed wetting; acceptance of this (it will affect her skin integrity)

1. Ability to manage her finances. If she lacks capacity and your brother is using her money to fund his lager habit, this is potentially a financial safeguarding issue.

Capacity is task and time specific. People are not assessed as just 'lacking capacity'. It is related to something in particular. You can advise the SW though that you don't think your mum can safely weigh up the consequences of bed wetting. Has your mum had a continence assessment by district nurses? Sorry if you've said this already but I can't check as I'm replying on my phone.

It is, in my view, better to go through the local authority to arrange care. They oversee the agency who they contract with and assess if your mum's needs have changed after a period of time and then annually. It's usually a cheaper rate too.

You mum will have to be financially assessed to determine what if anything she contributes to her care. It's on a sliding scale. Sometimes LAs do a 'light touch' assessment if finances are not complex (the LA Finance Team can get info from DWP etc). Again, you could act as your mum's representative to support her when the assessment's done. In our local authority the maximum is that the person can be charged upto is £400 per week. It's different for residential care.

As regards residential care, I obviously don't know the full story, but it sounds as like your mum won't meet the threshold for permanent residential care. There's other options like assisted living accommodation. Some of these are lovely. I suspect though your mum wants to stay where she is so the SW will be looking at supporting that. Is she eating and drinking properly? Is she falling? Can she independently look after her own home?

'- I don’t know if I should try to get her into some kind of assisted accommodation (if so, how would I make that happen)'

You explore this option with the SW who can help you through the process. However, if your mum has capacity about where she wants to live and refuses to entertain the idea, it can't happen.

Btw, assessing capacity follows a certain format. So,

Has your mum got a physical or mental impairment (and this could be a uti at the time which can cause confusion) which affects their wellbeing?

If so,

Can she understand all the information necessary to make a decision around, say, bed wetting, or giving your brother money? (Does she for example realise it could affect her skin integrity?)

Can she weigh that information up appropriately to make the decision?

Can she remember the information necessary to make a decision?

Can she communicate it effectively (threshold is really low here)?

Get a SS review. If she’s sending carers away that is a red flag for them.

Lots of useful information there Soppy. Wish I'd known half of that 2 years ago.

The other thing to remember is that you need to have a really good think what support YOU will or could offer and be very clear with the SW that you are unable to do other tasks. If she does not have support for those tasks, that your mum's needs will remain unmet and that it would be a safeguarding concern. The crux is whether or not your mum has capacity to make decisions around that unmet need. If she does, she is entitled to choose not to have that need met (what is called 'an unwise decision'). If she does not have capacity, a decision needs to be made about that need in her best interests.

Thanks everyone for your input and in particular @Soppyseptember for the information about capacity. It had seemed to me when she had her last assessment last year that the social workers would allow her to reject all care unless she had obviously lost all her marbles, but it’s obviously more nuanced than that and I’ll have to read up. I think she must have capacity issues as she is not able to manage her benefits or bank account without me, and the current frustration is that she says she will need groceries but can’t tell me what to order for her online. She definitely doesn’t understand that it’s not ok to sleep in the wet bed.
It’s all a bit more pressing now as my eldest brother that has been getting her groceries and helping her with laundry/ wet bed situation has completely exploded with rage today and said firstly that he has a contact who is going to help him put her in a home (which sounds like nonsense to me) and then has said that he’s going to ignore her for the next seven days (this is all via text to my other brother, I don’t speak to eldest brother because I tired of his rage and nastiness and got fed up of being the family punching bag - another long story). It seems that eldest brother is getting upset as mum has been asking him to buy her a nightie and he can’t cope in the nightwear section of m&s (!) and also he says me and my other brother never visit her or phone her and have abandoned her (I’ve not visited during the pandemic but phone her every week, but I guess she doesn’t mention this as I stopped speaking to my brother after he was abusive).
I do have massive sympathy for eldest brother as cleaning the urine soaked bed and going to the supermarket must be a real pain for him and feel like a relentless burden, but it’s hard to intervene as mum seems to want him to do everything (perhaps why she turns away social service support and turns a blind eye to the huge grocery bill) and he does not communicate rationally but just screams and swears. Mum says he is not aggressive with her but this is the second time he has suddenly got very angry announced that he is leaving her to it, and she gets very upset. Also he told her today that he’s not helping her next week because me and other brother told him not to 🙄

So now I’m wondering if I should call the adult care team tomorrow and tell them that she is in a crisis situation, or wait it out and see if he relents.
For the record me and my other brother live several hours away from mum, and eldest brother lives next door to mum. And I am happy to organise things online but neither eldest brother or mum can communicate what they need 🙄

Gosh sorry that was very long, think I needed to vent!

Call adult SS. Perfect pretext to get some action

I’ve called adult SS this morning and told them it’s an emergency, and have tried to talk about capacity in the way kindly explained by @Soppyseptember. Eldest brother does seem to have left her with a week’s supply of food so seems to be missing milk and newspapers only. She is holding out hope that the he will come back today but I’m trying to get it through to her that this isn’t sustainable long term. She seems to think though that everything was fine and it’s just that me and other brother have upset eldest brother 🙄
I’m pretty sure she will turn them away again if she thinks eldest brother will return though. Fingers crossed I can do better for her with the social workers this time round.

What did SS actually say? Are they going to come and assess?

SS said they would but I haven’t heard anything from them yet.
In the meantime I had managed to sort out a grocery delivery but then eldest brother turned up late afternoon having made her dinner and bought her stuff and apparently was very nice to her/kissing/hugging her and she’s convinced he was upset because of me and other brother. So I guess if he is around then social services won’t help. I’m not sure what to do - I could push the safeguarding thing with SS on the basis that his rage and sudden withdrawal of care are tantamount to emotional abuse. If I managed to remove him then we could reduce the grocery bill from the £800/£900 it is now and that could fund proper care to deal with the urine bed / inability to wash. But ultimately she really wants him (and she is used to his moods as he is 50 and she has only every really known abuse having been abused as a child and in 2 marriages) and I’m not sure she would forgive me if I played a part in reducing his involvement. Also I don’t want to get him into trouble if he is spending all her money on lager. But I managed to extract from her yesterday her shopping list and she eats own brand bread, pate, shreddies, some little dessert things etc and I struggled to get more than £15 in the basket. Tenaladies and cigarettes are expensive but going on what she uses, that should only be £300 a month. It’s a bit awkward accusing someone though.
I just don’t know what to do with it all really.

And I asked her if she really wanted to spend the next 20 years of her life putting up his moods and she said she’s only going to live another 2 years so it doesn’t matter ☹️

I would think this would also possibly be viewed as an adult safeguarding issue if he is emotionally and financially abusive OP so social services should take this seriously.