Active discussions

Please or to access all these features

Talk
Elderly parents
Original poster

Elderly mum refusing help but needs it

32 replies

FestiveBake · 19/11/2019 22:10

After having looked after MIL with dementia for a few years, it seems my mum is declining in a very similar way, quite quickly.

She has other mental health issues and her GP describes her as ‘eccentric’. After two hospital admissions, district nurses now visit every day to administer diabetes meds as she’s too chaotic to do this herself.

She is incandescent that this is happening, denies she can’t look after herself etc. She hides the medication they leave in her house and blames the nurses, makes their life terribly difficult. Has much medication from previous years and randomly gives herself extra doses of insulin - it’s a miracle they’ve always managed to realise this before an accident has taken place.
I receive a call at least twice a week to let me know how difficult she is and what she’s done this time.

Her house is horrendous, she has hoarding issues but it’s filthy. Particularly around food, there is decaying food all over. The nurses have called me twice already this week for this issue. She won’t let me look on her fridge or throw food out. The nurses think there’s flies in the fridge (so possibly maggots?)

She refuses to have help and is massively over any threshold for free help (which I think she could be persuaded to have if she didn’t have to pay). I have financial POA but nothing else. Her GP has been to assess and says she has enough capacity to make her own decisions but acknowledges she is quite a risk to herself in many ways. She has been reported to adult safeguarding on a few occasions but I haven’t heard from them.

What happens now? It really is a matter of time before she either burns her house down with smoking, has a diabetic coma, poisons herself with food or something else.

We don’t particularly get on, she has terrible narcissistic tendencies and I have withdrawn other than occasional visits, calls every other day. She tells everyone how awful I am (professionals - thankfully they can see through her). She would however love me to offer to do housework but I have a demanding full time job as well as my own young family and just can’t. She’d let me pay for a cleaner but I can’t afford to - she’s much wealthier than me.

Im just not sure what happens now - I think if something happened, I’d feel terribly guilty.

OP posts:
New posts on this thread. Refresh page
RhinoskinhaveI · 27/12/2019 23:19

It does sound very dangerous, this woman could take out the whole neighbourhood if she blew her house up 😳

ConfCall · 26/12/2019 18:20

You’ve done what you can and have been met with firm resistance. It’s honestly not your fault. Step back and let things unfold. Don’t make yourself unwell over this.

artisanparsnips · 01/12/2019 13:53

I have been where you are almost exactly, and I only wish that I could offer some help, but when I was at almost exactly this stage, my mother was admitted to hospital after a fall and as far as I can tell decided she would rather die that have help.

What I now know is that there is a name for this - Diogenes Syndrome - although that doesn't get you much further as it's not the same as not having capacity. But I did find that naming it made me feel better, as I realised it wasn't my fault and I couldn't sort it all out. Not even the doctors can.

This is quite an interesting read on the whole subject of elders, DS and capacity. Again, it doesn't solve anything but might make you feel a little bit better.

If you want to DM me, do.

Supersimkin2 · 23/11/2019 14:09

Either way, OP's mum isn't getting the help she needs.

MereDintofPandiculation · 23/11/2019 09:30

Capacity isn't an all-or-nothing, it's very clear in the guidance that it is a decision by decision process, and up to the person asking the question to check that the elder has capacity. Your capacity to decide whetehr to have tea or coffee, or what clothes to wear for the day, is separate from your capacity to decide which account to put your savings into, or understand and sign a DNR form.

Original poster
FestiveBake · 22/11/2019 14:34

That’s not all they asked her. The GP has carried out the assessment and says she has capacity. Which actually I agree with - at the moment - she is absolutely oriented in time/place, it’s the odd behaviour (of which I have only mentioned food hoarding, leading to beetles crawling on her worktops and flies in the fridge) that’s worrying and indicative of a wider issue with her mental state.

OP posts:
justchecking1 · 22/11/2019 14:05

Folding paper in half isn't part of a capacity assessment, it's part of a 3-stage command task on the mini mental state examination.

Capacity comes down to whether a person can retain, understand, weigh up, and communicate information relating to the decision being made. It has to be decision specific.

If that's literally all they asked her, it doesn't sound like they've done a capacity assessment, more a functional/cognitive assessment

Original poster
FestiveBake · 22/11/2019 13:26

@Supersimkin2 I am doing that - just presenting issues and leaving them to sort it while being helpful and supportive of the services. But I do feel horribly guilty about it and that I should be doing more but a) she won’t let me and b) I simply can’t offer long term help.

OP posts:
Original poster
FestiveBake · 22/11/2019 13:24

Well we must have had poor assessors then in both cases for our mothers.

‘Can you dress yourself?’ (yes she can)
‘Can you wash yourself?) (yes, but chooses not to)
‘Can you make food for yourself?’ (Yes if you count toast, but she chooses not to)
‘Do you need help with cleaning?’ (Yes but mum says no)
‘Spell world backwards’ (intelligent woman - no prob)
‘What’s your address?’ (No prob she’s lived there 50 years)
Count backwards in 7a from 100 (again no prob)
‘Do you know what a £10 note looks like? (Yes)

She presents really well with the ticky box exercise questions. It’s only when you delve into complex undiagnosed mental health issues around hoarding and behaviour that you realise she’s not at all ok. But these questionnaires and assessments don’t do that, as long as she ticks the questions (and she does) she has capacity. Her GP describes her as ‘eccentric’ with a wry laugh, knows the issues but because my mum isn’t highlighting them as a problem for her, it isn’t something the dr would address until it becomes untenable.

OP posts:
SheSnapsThenSheFarts · 22/11/2019 12:42

A good assessor should see through any moments of clarity though and consider all factors?

My mum (and I quote) 'presents very well'. They still decided she lacked capacity though, which was a relief.

Supersimkin2 · 22/11/2019 12:38

Because under the law you always have capacity until you don't. And even then it can come back and go again within 5 minutes.

The bar for capacity is set very, very low. The tests are hilariously inadequate - one test is to be able to fold a piece of paper in half. That proves you can make complex financial and life decisions.

Courts and doctors are admitting the rules don't work but no changes as yet. SS take full advantage of being able to leave a sick person in danger, however.

SheSnapsThenSheFarts · 22/11/2019 12:27

How do they explain their conclusion that she has capacity?

Supersimkin2 · 22/11/2019 12:24

@FestiveBake fair enough. You can't afford to care in terms of money, time, health and your other dependents. Anyway, you don't have to.

DM will probably not be moved until way after the threshold of safety has passed. But that' battle is SS's, not yours. Explain the limitations on both sides and then leave them to fulfill their responsibilities.

Original poster
FestiveBake · 22/11/2019 12:08

She has no friends. I have no siblings. There’s literally no one to take her anywhere except me.
And tbh, I don’t want to start with cleaning/sorting (although I did when she was in hospital but less than two months later it’s back to the same state) because then that’s another ongoing task I have to fit around my young family and demanding job. I’d end up paying someone to clean my house so I could fit my mum’s cleaning/sorting into my life which I can’t afford to do, when she has plenty of money to pay for a cleaner but doesn’t want it.

I know this sounds heartless but we have done it for years with MIL and it’s taken a toll on my kids who’ve been regularly sidelined so their parents can care for an elderly relative - MIL passed away and we’ve had a month’s break from caring and now I do t want to start that again for the sake of my sanity and our family life.

OP posts:
Ariela · 22/11/2019 11:37

ANy chance you could arrange someone to take her out for a trip out (lunch, tea, bit of shopping) as a treat and you meanwhile go visit and throw out the out of stock food and clean the fridge?
We had to resort to these tactics for my friend's grandad before we got him into a home.

Original poster
FestiveBake · 22/11/2019 11:13

Well if my MIL’s experience was anything to go by, it will be long past the point of ‘safe’ before anyone does anything. MIL was much the same re capacity - came across as intelligent and plausible yet she would leave her house at 9pm in winter carrying £12k in cash (which she’d been able to withdraw from her bank as she had capacity). But no one thought this was enough to invoke any capacity decisions.
Anyway my mum’s GP is much more on the ball. They seem to be reporting daily now to adult safeguarding so let’s see where this goes. I spoke to her about it and she assured me she’d thrown stuff away. I’m going to visit this afternoon so we will see. Thanks for all your help.

OP posts:
MereDintofPandiculation · 22/11/2019 09:49

In time, DM will lose mental capacity so badly that even the GP/local police/trained social workers will notice and she will be put into care whether she likes it or not. This so scares me. When I get to that state I do not want to be "kept safe". Anything to shorten my life! Sorry to interpolate that into the thread, it's just one of the difficulties, MN is a lifeline for sorting out the here and now but scares me shitless over my own not too distant future.

Supersimkin2 · 21/11/2019 16:10

Oh dear, this is really disgusting. Poor OP Flowers

The pre-care years are no joke for a dementee's family.

There's only one thing you can do. Tell SS that she's their problem now as she's too demented and hostile to cooperate with you. They'll understand, and they're much, much better at taking action when it's their neck on the line.

In time, DM will lose mental capacity so badly that even the GP/local police/trained social workers will notice and she will be put into care whether she likes it or not. Explain to SS she has plenty of £££ & you're more than happy to write the cheques for her.

Once she's in care, you can finance the home and if she doesn't want to let you have the health POA her lawyer or a social worker will do it.

Get a separate mobile for DM matters and turn it off at night.

StrongTea · 21/11/2019 16:09

Would your mum consider short term residential care while house got sorted out? Elderly neighbour wasn’t looking after herself and fridge had broken, all food was off and she just wasn’t eating. Just skin and bones and also very confused. After I had made numerous calls to social services she did agree to go into care and sadly assessed as unable to care for herself. Very difficult situation for you.

Original poster
FestiveBake · 21/11/2019 15:57

Adult safeguarding contacted me today as the nurses have reported she has beetles in her food.
They are going to visit my mum but I have spoken to her and she is so plausible about it being a ‘one off’ and it is all sorted. I have broached the subject of a cleaner and she has point blank refused to have one. Thanks for your help, it’s good to have somewhere to vent.

OP posts:
Topseyt · 21/11/2019 08:29

Have you tried to make contact with the adult safeguarding team yourself? Tell them everything you have said here.

They may not be able to tell you anything much due to patient confidentiality or data protection issues, but it might nudge them along a bit.

It is hard when elderly parents don't want to accept the help they need. Mine could do with accepting more help too, but don't want it. I don't have dementia to contend with, but just them being much less physically able than previously, and generally reluctant to admit it.

Hepsibar · 21/11/2019 08:26

Oh dear, it's you I feel for so much. My mum is still able to manage her medication and go shopping and cook, but she does not remove her gone off vegetables from the fridge, so I have to surreptiously do that and really needs a cleaner, but wont pay even though can easily afford to. Also hates District Nurses.

Could you say something along the lines of "If you dont have a cleaner, you will need to go into a home" but it prob wont work.

If they are all judging her to have mental capacity, then it really isnt your fault esp as you have notified all agencies of the issues many times ... they are prob so under-resourced they take the risk of no help for as long as poss and only intervene after something happens.

I would suggest, if not already done so, putting it in writing and copying to each agency the issues.

Original poster
FestiveBake · 21/11/2019 08:14

It is registered with office of public guardian. She has received attendance allowance for years for multiple chronic conditions but essentially she doesn’t want to use that to pay for her care. She has lots of money in the bank - I am probably not going to inherit it (she won’t tell me what is in her will) so I don’t know why she doesn’t want to use her money.

OP posts:
MereDintofPandiculation · 20/11/2019 21:32

How has the Financial PoA been set up? It can be written so that you can act as an attorney even while she still has capacity. If that is the case, you could use her money to pay for a cleaner (without telling her ... hopefully by the time she finds out she will have accepted the cleaner)

Just read that PoA is not activated - has it been registered with the Office of Public Guardian? If not, get that done asap - you may need it in a hurry.

Alternatively, you could apply for Attendance Allowance for her, and, if successful, use that for a cleaner.

Whatever you do, remind yourself that she still has capacity and therefore it's her responsibility what happens to her, not yours.

Original poster
FestiveBake · 20/11/2019 14:28

She’s been referred to adult safeguarding on a number of occasions. She’s stopped the dr from looking in her cupboards. She doesn’t cook, just shops daily for ready to eat foods.

OP posts: