Elderly mother, squalid living environment, refuses help

Honestly, OP sometimes, when help is resisted and the person will NOT change, sometimes you just have to step back and wait for the almost inevitable crisis to occur.

Don’t coerce your mother into signing an LPA. People completely misunderstand the purpose of an LPA. It’s not there to allow you to dictate what happens to your loved one. It’s there to support them to make decisions unless they’re completely incapacitated. You are supposed to consult them on their wishes even when they are deemed not to have capacity. Not ride roughshod over them to suit your own interests. (This to PP above. My previous advice on mum for OP.)

If she's dependent on you for everything, this does at least give you quite a lot of power - refuse to do the next thing she wants until she signs the health POA. Given what you say about her state of health, it sounds like you'll be needing to activate it, and able to, before much longer.

Then follow pp's advice about reporting the hoarding and getting ss help. But if that doesn't get you anywhere, take a couple of boxes of hoarded crap on each trip, when she's not looking, from whichever room she's not in.

Sooner or later, she'll be in hospital and they won't want to let her go until she has care in place. That's when you have to stand firm and say she can't live with you and you won't be her carer either. Suddenly, as if by magic, things that were impossible will become possible, when they want her bed. But you have to fight your corner. Good luck.

Does she have any friends in a care home or any chance of going in for respite care (e.g. you are going to have a holiday/ need a break to catch up on x) where she could go in for a bit. She may surprise herself as to how much she enjoys it. My Mum went in for respite and liked it so much she wanted to stay. She is massively happier as are all of us kids, especially the one who bore the brunt of it.

If she isn't at that point, all you can do is say you will do x amount and the rest needs paid for help. She can use equity release if she needs to for that. Explain that much as you want to do everything for her, you just can't do it.

My mum isnt an all rounder hoarder apart from clothes. Ive just got rid of bags and bags of clothes. She has mild dementia so I did it with my marigolds on and it was exhausting.
My mums kitchen is a hazard too. The sink leaks and its 60 years old. Mention it to her and she has always got aggressive and v dramatic about it. The house is a mess so I am just always clearing it up. She doesnt notice that bag after bag is going into my car.
Ive no advice OP other than I know how difficult and awful this feels. Its so difficult.

Leave it. You can’t change it. I had a friend who was like this. He trashed 2 otherwise lovely council flats. In the end it reached crisis point and he ended up in hospital. He was discharged to a nursing home. I’d tried to refer to social care, but as he had capacity and didn’t agree, they could do nothing.

I just wanted to thank you for this post and some of the replies within it. I'm dealing with similar issues with my 84yo aunt, who has granted PoA to someone who lives abroad and is now 'encouraging' her to sell her (squalid) house. I go when I can, but also work and have primary age children. My mum (nearly 80) has been involved on and off but won't do anything unless I lead/force it. Sunt has a shopper/ cleaner/company twice a week (which I think is via the local authority and which I think she pays for or towards). Would that be an option for your mum?

Not sure but I think if you were on PIP before retirement age you can carry on with it afterwards.

Write a detailed list of all the negative impacts, emotional and social as well as practical, that this has on you.

Pick the three biggest impacts.

Work on those.

Eg if your biggest impact is "I'm worried people will blame me if something terrible happens" work on that. Or "Doing stuff for her means I can't spend quality time with my family" then have a think about changing that.

My mum has dementia but had always been untidy, now she's the same, doesn't thinkshe needs a cleaner but is happy for me to do all the hoovering and I have to clean her fridge out or it's full of mouldy out of date stuff. I just turn a blind eye to the mess and cobwebs as I have enough to do with my own house. My brother is exactly the same, lives 100s of miles away and never does anything but says 'just ask if you need help' ....

I'm sure my aunt still gets PIP. She's 66 and gets a state pension and my dead uncle's pension. She also had universal credit but that was replaced by pension which is more.

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

How does this differ from PIP?

@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.

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?

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.

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.

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

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,

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.

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.

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?

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.

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.

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