Elderly mum refusing help but needs it

[FestiveBake]

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We don’t particularly get on, she has terrible narcissistic tendencies and I have withdrawn other than occasional visits, calls every other day.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.

This is a difficult one. If she has the capacity to make decisions regarding her care and finances then there's nothing you can do. POA can't apply if she has the capacity.

Mental capacity allows people to make poor decisions as long as they understand the risks.

You can refer to social services/Safeguarding but without her consent it won't go anywhere. Her money doesn't come into it for an assessment of need.

Would she accept help like a cleaner- maybe from Age UK or similar? I know people who have done this - cleaner then starts doing more for client and acts as another pair of eyes. Can also chuck out the old meds on the sly.

See if she will agree to a fire Safe and Well check (or whatever they call it in your area) which should open doors to free safety stuff.

She definitely wouldn’t accept help from a cleaner if she has to pay for it. As for chucking stuff out, my mum is very protective over her hoarded things and it just wouldn’t happen.

She’s had the fire service round, they’ve fitted alarms etc and warned her of the dangers of smoking in bed but to no avail.

It’s tough.

Would she let you dispose of any old medications? Anything that was out of date?

Could you get a coded lock box to store the insulin in? Make sure district nurses have the code, justify it to her as she's given herself overdoses. Trickier if she has insulin that needs to be kept in the fridge.

I think I would have to throw out the rotten food. If you have POA, set up a standing order to pay a cleaner, it's for her benefit. Does she get Attendance Allowance, that would pay towards help.

Coded locked box was suggested and she said if I bought one she’d throw it away as she didn’t need it. She will not accept that she’s given herself too much meds because she’s been able to manage it for 40 years and there’s nothing she can’t manage now.

She won’t let me throw out food or meds. Stands in front of me/cupboards and has a temper tantrum. I’m not going to push an 80 year old out of the way.

Poa is set up but not activated. She wouldn’t let a cleaner in either.

This is horrendous for you, I really feel for you. It is hard to know what else you can do if she has mental capacity - she cannot be forced to do anything she doesn't want to, whatever the risks to her health. Remember she is making these decisions herself, so she alone is responsible for the consequences of those decisions. As you say, you can't physically shove get aside to clean out the fridge, and she wouldn't thank you for it either. At least the nurses are well aware of the situation and your efforts to improve it, but it must be such a strain.

if her gp or the nurses feel she is a danger to herself and have already referred her to the safeguarding team can they help at all, would she stop medical professionals chucking out old medication and keeping her insulin locked up? if she is at risk of medicine mismanagement then I am guessing her gp is aware and a full review has been done with the gp and pharmacy. how does she manage cooking and day to day stuff, the fridge might be a health risk and it's difficult to understand that she is living in such a desperate state and everyone knows about it.

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.

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.

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.

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.

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.

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.

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.

Oh dear, this is really disgusting. Poor OP

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.

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.

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.

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.

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.

@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.

How do they explain their conclusion that she has capacity?

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.

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.

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.

@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.