Elderly mother, squalid living environment, refuses help

[JoJothegerbil]

This is long but I need to offload as I’m at my wits end. My DM has been variety of heath issues; controlled schizophrenia, type 2 diabetes, mobility issues, incontinence, deafness, and is a hoarder. She’s 83, been widowed for nearly 30 years and is living in her own unsuitable home at the moment.

I currently take her to all her medical appointments, hairdressers and her shopping despite working full time. Fortunately I have a very flexible boss although I am using annual leave for this type of stuff when I’d really rather be using it for my own benefit. Mum’s house is quite frankly a bio hazard. I have cleaned it so many times but it just ends up being a tip again. She won’t throw anything and basically has the contents of our 5 bedroom childhood home in a very small two bed terrace.

The fridge is revolting and full of out of date food which she keeps promising me she will sort and I don’t need to do anything. Honestly, I can’t face doing it again anyway so I’m largely ignoring it despite knowing that it’s grim. I haven’t been in the bathroom for months but I’m sure that’s disgusting too.

She had help from social services a couple of years ago with decluttering but as she wouldn’t get rid of anything, all that happened was stuff went from shelves to boxes and these are now everywhere.

I’ve suggested help but the last time I did this she accused me of spending all her money. I can’t do this any more. The state of the house upsets me so I can’t bear to be there for more than a few minutes at a time. I have a brother, but he lives 200 miles away and although he talks the talk, he’s barely here to help.

Mum is oblivious to the mess. When I suggest gently that it might be a good idea to wipe surfaces and throw stuff away, she looks at me like I have two heads. To top it all, she’s a narcissist and loves to manipulate and make me feel bad.

We have financial POA but not health - ill advised by the family solicitor who, when we took out the financial one, said health wasn’t needed as it was really only for making decisions at end of life so mum wouldn’t do it. Mum is entirely dependent on me for everything as she can longer drive or go out independently and I’m struggling.

Does anyone have any advice? Social services were virtually useless when they were involved before as mum has too much money and would need to self-fund.

Let her house be a mess. You cannot change the way she is and the way she wants to live.
Get her shopping delivered if you can, even sometimes. Even if you have to do the online ordering, it will save you time going to the supermarket. Can she get taxis to some of her appointments?
The answer to a lot of this may be no, depending on how resistant she is, I know. But you can change your mindset on the cleanliness and hoarding.

All you can do is back away and only do what you can manage and re-refer to social care for self-neglect as she deteriorates. They probably won't do anything as she will be deemed to have capacity, but when the next crisis happens re-refer again and keep doing it until a threshold is crossed for them to intervene. It could be that with less support from you, her mental health issues that impact on her self-care become more apparent. There is nothing else you can do. It is so hard if they won't accept help and from experience you will burn yourself out trying to pick up the pieces whilst shouting into the void. She is making a choice and people are allowed to make choices even if they are what we would consider bad ones for them. I would also speak to the GP about non-emergency patient transport to appointments and get shopping delivered to her.

To echo everyone else- there is nothing you can do to change her😕
Don't be sisyphus labouring to get the boulder up the hill only for it to roll back down and you have to repeat the same labours over and over again.

OP I completely understand and could have written your post two years ago. It is incredibly stressful screaming into the void and watching a car crash in slow motion.

But you have needs too and if you burn out then she won’t even have what you would choose to do. So you need to accept that you are actually doing too much (I know this is a slow creep from where you started and you constantly feel you should be doing more).

Hoarding means fighting a mental illness and family are honestly not able to do that. You do need to keep telling social services about the situation, that you cannot be her carer and that she doesn’t listen to you.

Your mother will qualify for attendance allowance, which is a non means tested benefit, and would cover the cost of a regular cleaner. It's quite a lengthy form to complete but the money is quite generous.

If she refuses to have a cleaner, refuse to go into her house.

If she can't go out and shop at least she's not bringing more stuff into the house and wouldn't be able to if it was sorted out one last time. There are all sorts of internet influencers who do free deep cleanings nowadays (amazing but true, have a search on Instagram).

Is she under a mental health team for her schizophrenia? Or monitored by the GP? May be worth flagging up the self-neglect at her next appointment, or requesting an appointment, and exploring what support might be available.

Blimey OP, what a handful. All she's missing now is a gambling habit and opiate dependency, and your happiness is complete!!!!!!!

The magic word with adult social care seems to be "safety" so perhaps keep emphasising that you cannot ensure it for her.

Good luck 💗

To answer a few Qs…

Yes she does get Attendance Allowance which gets spent every month on crap from Amazon. So although she’s not going out and buying stuff, more is being added to the house all the time.

Her mental health is controlled and the Drs seem to have no interest as long as that is the case.

Taxis may be an option but I’d have to sort it all out for her so I feel like I may as well just take her. Going shopping is the one time she goes out each week so I’d feel bad if I made her get it delivered each time. However, having said that, DH and I are going on a much needed holiday in October and will be gone for 2.5 weeks. She will have to get shopping delivered if she wants to eat so it might be a good idea to trial it then.

I’m also suffering from second hand embarrassment due to the state of the house. It’s a small rural town and people gossip. I fell out with her neighbour not long ago because she tidied up the drive - neighbour has right of way - and the neighbour asked me why I wasn’t doing it. I was caught unawares so didn’t say anything but I was so cross when I got home. Firstly, I’d not asked her to do it, she just did. Secondly, what I do and do not do is none of her business. I really wish I’d said something at the time.

I know I need to be ‘less available’ but it’s really hard. I don’t even like my mother that much. She put my dad through hell not long before he died but I help her because I feel obligated and guilty if I don’t. I need to get DB to step up a bit too. He’s come down twice this year so far, and one of these times was Christmas.

I’ll have a go at social services again but they were pretty useless last time.

Thank you for the replies. I know a lot of this rests on me changing my mindset and I really appreciate the input. Does help to make me feel less alone.

If she can order stuff on Amazon then she can do her food shopping online OP. Cut that out at the very least.

I'd get majority of her food shopping delivered and then you can take her out as and when for more fun shopping or treat bits. Less quantity more quality - a few shops and a coffee out, garden centre type of thing
Perhaps your brother can pay for the shopping deliveries as one of his contributions

In terms of her garden or drive you can consider a gardener as and when from your mums attendance allowance or whatnot but just ignore the neighbour.

You can't help with the hoarding. It's a complex mental illness and all you can do is do what you can/want to do when you can. Eg if you were feeling like you'd enjoy a big purge or a blitz of the bathroom, crack on but under no obligation and no real expectation that it'll be kept up. My dads house was similar, very messy and hoarded books and clothes - I used to blitz a random bookshelf, coffee table or bathroom sometimes just out of boredom..

It may be 'comtolled' in that she doesn't have active psychosis, but lack of agency resulting in self-neglect can be a consequence of schizophrenia. It's worth flagging. It's a serious risk to her health and wellbeing and services will take notice of this if it's brought to their attention

For context, I'm an OT and have worked in community mental hesth for a long time. Your mum is the kind of person who would come to our attention. You could request an OT assessment from her community mental health team. There may be a wait.

I sympathise in the sense that my DF is the same. He is a hoarder, it is very obvious. He will refuse to throw anything as he believes everything holds great sentimental value. He has the contents of his childhood farmhouse, the contents of his mothers bungalow, the contents of his brothers flat and all the contents of his house plus much much more. Its heartbreaking but he gets physically angry and distressed if I try and tell him anything or do anything about it. The fall out it causes is just not worth it, he gets so upset.

Refer to social services ASAP.
Can you request that the attendance allowance is paid to you so you can hire someone to go in and help a few times a week to take the pressure off you?

Video the house, especially the hygiene and food issues ie the fridge, kitchen, bathroom, and use that with Social Services to demonstrate what's going on behind closed doors.

If the house is dangerously cluttered and will impede her getting out in an emergency, speak to the local Fire Service - they may be able to help as well.

I feel your pain OP.

My Mum is a hoarder. I’ve simply stopped going into her house unless I absolutely have to. She has capacity but regularly gets ill from eating out of date food, because she has the “never throw anything away” attitude of her generation. I hate food waste too, but my fridge is clear enough to know what’s in there, so I eat it before it goes off. My Mum’s fridge is rammed full, stuff falls out if you open the door.

She has quite regular minor falls because there are papers all over the floor that she trips on, also boxes, and multiple pieces of furniture (which fortunately break her falls, so she doesn’t get seriously injured).

But as I say, she has capacity, so I can’t intervene in any way against her will. I speak to her every day and see her often, because she lives 100 yards away so she can walk to my house.

Last week I found some rotting fruit on the floor under some newspaper. Literally - an apple that had liquified, an orange that was green and furry, and a banana that was hard and black. I had to sneak it out because she would have either eaten it or kept it for her “fossilised fruit” collection!!

But she’s an Oxford graduate, who regularly reads Shakespeare plays for fun, and can talk intelligently and eloquently about anything.

I think you have to step back, help where you can, but maintain a distance sufficient to maintain your sanity. There will come a time when you have to step in, but until then just do the minimum.

Either you mum had capacity or she doesn’t so the POA for health is irrelevant. If she doesn’t have have capacity then the local authority can make a best interest decision and intervene. If she does have capacity then it doesn’t matter if you had POA or not.

Remind social services that self neglect is a safeguarding issue and they have a duty to your mum.

I think my advice would really be to accept that you don’t have to solve this, is probably not solvable. You can request support from social care again and then take a step back and accept the situation as it is and have just the right amount of involvement with your mum that would mean that when she does die you don’t have to feel any guilt, which can often happen when we have to put distance with toxic relatives,

Can she have a couple of weeks respite in a care home so cleaners can go in and vleand and give you a break, I do know of care homes that do this, we've had hoarders in the thd one I cook at, and they have come in while its being sorted

The issue with hoarding, it's such a complex mental health issue, but even some mental health services will argue its not. When local authorities get involved they may be able to get a grant to help the client clear the property, but because the root of the issue isn't resolved more often than not it repeats over and over again. Most of the time it follows trauma, potentually a loss, then collecting for comfort to fill a void or to regain control becomes hoarding.

The fire service can visit to offer advice and they may fit extra fire alarms, provide fire retardant materials if appropriate. Sometimes being asked to rate their own home on the fire service hoarding scale can be the begining of realising how bad things have gotten, many available on Google, maybe see if your mum recognises her home in them.

Even if the fire visit isn't agreed to, they should mark your mother's home as high risk on their database, so if there was ever a call from the home or possibly a neighbour they know the volume of belongings would make for a serious fast spreading fire and increase it's priority.

Hoarding disorder UK run support groups, I'm sure there's a few around the country. There may be similar services in other areas. Some hoarding support groups offer specialist clearance support through these groups, but often working to only what the hoarder will agree to, it could mean years worth of work.

Claiming AA and getting a cleaner could be a good start if your mum is willing to at least keep the kitchen, keep on top of the fridge and bathroom sanitary. Not all cleaners will accept, they need to be able to get in and out the house without risk to themselves. This cleaner if they agree could be timed with a weekly shop delivery one less thing for you to do.

Councils or landlords can have more authority if they own the property, but home owners with mental capacity refusing help, becomes very difficult.

When you re -refer, discuss fire risk, risk to health - is she able to do everything she needs to live at home - access toilet, bath, cooker, water. If in a terraced home the fire risk to neighbours.

You can also request a carers assessment in your own right, where you can stress your role is not sustainable.

It's not an easy position you're in, there are no quick fixes and you do need to prioritise yourself to keep mentally and physically well.

So sorry you are going through this.

I really sympathise with your situation. We had a very similar situation with my MIL, although she was living around 300 miles away. DH lived the furthest away of all his siblings, but they refused to do anything to help (or even go and visit). It all fell on DH and it nearly broke him. Luckily (!) she decided she wanted to move nearer to us and we managed to get her a place at a local sheltered housing complex, so after sorting through a 4 bedroom house full of hoarded stuff to select what was coming with her, we then got a house clearer to deal with the rest of it. It was the only way we could tackle it all, living so far away (and with two young children, full time jobs etc). She eventually moved but by then was declining quite rapidly with dementia, before she died due to cancer. It was an extremely difficult and stressful time, made so much worse by the fact the rest of the family had basically washed their hands of it all. DH has never forgiven them.
Not much help to you I’m afraid OP, but only to say you have my sympathy. Hoarding is a hugely complex mental issue and not one that is (in my view) solvable by anyone other than the hoarder, if they can get appropriate help.

Does she have capacity?
Adult social services possibly, but having capacity means she can say no and that’s it. They can be persuasive though, if they’re good at their job.
Your DM is likely bored hence the mindless spending? Would she engage in clubs? An understanding cleaner/home help?

@JoJothegerbilOP I work as an RPR (Relevant Person’s Representative) for people subject to a DoLS in care homes and I have a client whose background is very similar to your mum’s except she didn’t have a daughter. She was very reliant on neighbours who couldn’t keep supporting her. She ended up in hospital with an infected toe from self neglect where they assessed her capacity for care and accommodation and decided she was unable to understand her own needs and made the best interest decision to go to a care home. (I’m actually helping her to appeal, but that’s another story.)
Maybe think about how your mum would be managing her health and wellbeing if she didn’t have you. Social services will be keen to avoid your own burnout.
Call them. Explain the condition of your mum’s house. Send them some photos. Tell them your relationship and ability to care for her is breaking down because you’re burnt out. Ask them to attend urgently to conduct a care assessment and a capacity assessment. I suspect they may look for a care setting for her, if only for respite / cleaning the house.
Good luck. It’s a very difficult situation for you. You need help too to protect your own health and wellbeing.

How does this differ from PIP?

Age. You cannot claim PIP after retirement age, AA is the closest similar benefit payment.