Elderly parents living in uninhabitable home

Ok. I dealt with this exact situation.

Short story - one parent ended up being sectioned (to be assessed for dementia). I moved the other parent close to me.

Parent 1 spent a year in a hospital then moved to a care home. They do have dementia. Surprisingly, they love the care home and their mental and physical health is much improved. For the first time ever, they are sociable (like the OP I suspect undiagnosed ASD)

The other parent now lives alone at their wish. They are understandably sad at losing their partner of nearly 60 years in this half fashion.

I involved social services. I contacted them and the GP stating my concerns. GP called parents in for a review. The social services received a GP report and invited them in - parent with dementia refused to go and it escalated until sectioned for assessment then again for treatment. I presented social services with photos of the inside of the home - parent with dementia was also a hoarder. Huge level of disrepair.

No POA in place so I went for Deputyship. Took a while. I have a solicitor who I am very happy to recommend if anyone wants to pm me. She was great, and handled the case very well.

OMG thats just awful.....

I had similar with my Dad maybe not quite as severe with the toilet thing.
His legs are bad and he just could not get in the bath anymore or use the shower in there.

So I applied for a disabled grant. Came back that he had to pay £200 towards getting an adapted shower room done (Actual cost was £3000). He went mad "£200 for a shower, thats robbery" Good grip on costs my Dad has!

So he decided he just wouldnt wash rather than spend any money (hes got £40K+ in the bank). That went well - he was buzzing!

Same with is living room carpet. It was 20+ years old threadbare and he fell over it a few times. Nope not spending any money carpets last longer than 20 years according to him.

Stair lift. Same. Nope. Peed in a bottle in the kitchen (I never asked about numbers 2s). Got upstairs to bed albeit slowly mind.

I tried social services, his GP not interested. Basically, hes an adult of sound mind, if he decides its ok and doesn't want to spend money thats up to him.

I got so stressed about it all. In the end, he did give in and get all these things sorted. (Still pees in a bottle in the kitchen because he can't be bothered to go up the stair lift- its lovely when you're elderly Dad drops his kegs and says one sec you don't mind do you?)

These days I offer to help. If he says no then I think stuff him. Most times months later he'll change his mind. Hes still got £40K+ in the bank which he cares more about keeping than his own comfort at home. Stuff him.... I learned its not worth me stressing over. If something ends up killing him that I've offered to sort and hes been too stubborn to agree then thats his fault....

Never ever will I inflict that sort of burden onto my own children Many of the older generation said the same. But 20 years later they’re convinced that they only ask their DC to do the odd tiny job, and that their DC make far too much fuss.

Going out on a limb here but they are all like that, to a lesser or greater extent. That generation's stubborn refusal to future proof infuriates me. It's like they are all sort of collectively borderline deranged. Massive wrinkly children.

Never ever will I inflict that sort of burden onto my own children. When they are mid-life they will have plenty of other things to focus on, and so they should.
It's been absolutely awful with my in-laws, at one point DH had to go to A&E with chest pain due to the stress. Mostly linked to their crumbling house with 1950s wiring and plumbing, and half a century's crappy DIY meaning carers, when they were needed, barely wanted to enter.
Lots of great advice above, sorry if I sound angry. It's been crap.

I've been through all of this a while ago and there is some really good advice here. I can't say there are things I wish I'd known - because I knew them at the time but felt very guilty that I couldn't do more - but here goes.

You probably can't fix this. As people have said, they have capacity, and the general sense is that it is generally the most stubborn who end up in this situation. All you can do is wait for a crisis.

It's really not uncommon, so much so that it has a name, Diogenes Syndrome. Or as one person put it, when being an eccentric person hardens with age. I found knowing that it was a 'thing' made it easier to deal with. But by the time they get to this stage it is not generally seen as curable.

It might be better not to intervene anyway. When people are removed from this situation, they are two or three times more likely than average to die (as @Milarky describes). My mother had a small stroke, was in hospital with nothing very specific but died after just a few days - because I think she would not have been able to bear not being independent. And perhaps also because I had seen her house, which I won't describe but was terrible.

It's almost impossible to get anyone to help you anyway if they are private owners. In theory the council can help, but they have no resources. The only people who might help are the Fire Service, but only if there is hoarding, as this can be a huge risk to life. To my mind, the only way you might be able to get help is for your mother as a vulnerable adult, but even then, it will be hard.

DM me if you want to talk.

Fair enough. I take your point. There is a sizeable proportion of the retired population who do think ahead, planning for a time when they will not be able to do much maintenance and also thinking about the burden they might place on their children if they continued to stay in a large property.

However, I can also think of multiple examples of ‘the only way I’m leaving this home is when they carry me out in a box’.

I also agree re the ‘5 bed exec house’ phenomenon. I’ve always liked those little alms houses and wondered why we don’t have more of those. I can fully appreciate though that part of the fear of downsizing might be the thought of having neighbours very close. That fear is justified. Way too many horrible people (just look at the threads on parking issues) out there. I’ve got one next door, actually, who wrote to my employer twice to say I was a criminal (I’m not).

If it became normal for the elderly to move to smaller properties, ideally with warden supervision, the quality of their and their families’ lives would improve. It is normal, isn’t it? Without trying, I can think of 6 people/couples in my social circle who have downsized.

In our area, all the new builds are “5 bedroom executive homes”. If I downsized, it would be to a small 3 bed, which are in shortage in our area. It would also make my life far less enjoyable than it is, unable to run the community group that meets in my house, losing the garden I’ve nurtured for over 30 years, losing all the produce from that garden. When I can’t cope, I will move.

Not sure if helpful, but there are ways that local authorities can intervene. https://commonslibrary.parliament.uk/unsightly-and-derelict-housing/

It seems such a shame, in a housing crisis, that there are so many large properties falling into disrepair. I see it all the time in my neighbourhood. The whole neighbourhood suffers.

Part of the problem is the narrative or ideal of staying in your own home until the very end of your life. The government is committed to and promotes this. If it became normal for the elderly to move to smaller properties, ideally with warden supervision, the quality of their and their families’ lives would improve.

If they don't want to move and still have capacity, then there isn't anything either you or social services can do

That's not entirely true. As I've said upthread there is an inherent jurisdiction on the state to at least try and engage them to improve things.

Even if they don't engage then the risks should still be assessed and if at a high enough level of risk considered under s.42 of the care act as a safeguarding concern.

The OPs parents also can't create a public health risk to others through poor sanitation/ fire risk/ risk of building collapse.

"My mum is very submissive and just goes along with everything my dad says."

I don't know how the SS system works but it sounds like she's living in appalling conditions due to the total control of your father. Is there a way SS would consider a welfare check on her?

This is the advice from Age Concern:'contact the local council in the area where the person lives and raise an 'adult safeguarding' concern. This should be done with the consent of the person wherever possible.If that's not possible, or you feel that seeking consent would create more risk, then you can contact the council without the consent of the person at risk.'

If they don't want to move and still have capacity, then there isn't anything either you or social services can do.

Adults, unless they lose capacity, can make whatever decisions they like, no matter how wrong-headed anyone else thinks those decisions are. It is their life, to live as they choose.

So for now, I'd accept that they are going to stay put (but gentle propaganda to persuade them to change their mind would be OK - just make sure you don't bang to to an extent that it becomes counter-productive)

And put your main effort in to getting someone in to do the essential house maintenance

My dad moved at 83 and created a new life for himself in the new location. It depends on the person and their willingness to do things for themselves, not on their age.

80s is probably too old to move
you need to concentrate on getting their current house fixed

We had similar with in-laws a few years ago. 7 bedroomed HUGE house. Packed full of hoarding shit.

They only lived in a narrow strip of living room. MIL had cats, who had kittens who shit everywhere. We took the kittens away as they were terribly neglected. She would just get more. Which we'd take away again.

This really was a house of horrors. There was absolutely nothing anyone could do. Social services were no good, what could they do if PIL wouldn't answer the door to them?

It was a nightmare 10 years. I had to take a back seat and forced dp to do the same. He would take a whole week off and just try and clear the living room, only for it to be just as bad and worse a month later.

Terrible guilt, we went down every avenue but nobody could help.

Ended when FIL died, and MIL stayed with us for a "few days". She never went back.

Put the house up for sale, she couldn't pay the mortgage. She screamed and cried, it was a horrendous few months.

Wanted us to pay her mortgage. It was insane.

Took 2 years to sell the house, and she stayed with us the whole time. And she bought a sheltered home. She died a few months later.

Was terrible traumatic time for everyone, and still can't see how we could have done anything different,

I just bookmarked your post @hatgirl thank you.

Self neglect can be a statutory safeguarding issue when there is a risk to life or if people are living in uninhabitable conditions.

Even if its dermined down the line that they have capacity and fully understand the potential consequences of living like that, the local authority still has an 'inherent jurisdiction' to try and engage with them to try and reduce the risks of harm to them from self neglect.

It's worth referring it to adult social care - local authorities all have different processes for responding to self neglect but what they should do (although many don't) as a mininum when a self neglect concern is raised with them is send someone out to knock on the door and have a chat with them.

If you get any pushback from the local authority because 'you don't have their consent' to refer them, remind them that the Care Act 2014 allows the local authority to make enquiries about self neglect without consent and in some circumstances (e.g. self negelct) there is a duty to at least try and complete a care act assessment if the local authority has reason to believe someone may have unmet care and support needs.

I don’t know if you could apply pressure via your mum - get someone from social services to say she’d have to move out unless he allowed people in to sort the house. Depends how much she’s on side with him.

It’s so difficult for someone who has been used to doing their own DIY to be in that situation, seeing the jobs pile up, jobs that you used to do but now take so long, and knowing that any contractor is unlikely to be as painstaking as you. And even if they are, they’ll be using modern materials and tools, which will make it look as if their skipping (now unnecessary) stages in the work.

I was in a similar situation op except my dad is alone. We hadn't been to his house for years and years, purely because it's a bit tricky to get to and he always came to our house or my sisters or we met in pubs/restaurants for family meals. He never really gave us cause for concern though, he was always smart and clean etc and so whilst he'd said that it needed a bit work we weren't overly concerned or prepared for the state of it.
His health deteriorated pretty rapidly and he needed regular visits and I was honestly shocked, upset and pretty appalled at the state of his house, no central heating, no working shower, bare floorboards, toilet flushing with a bucket, ceiling had come down in one room.. it was a total mess. He still refused to move, or even consider moving.
It came to a head when he was admitted to hospital critically ill. He lost capacity there and was placed in a care home by social services (no POA, again he'd refused). He's since recovered remarkably well but since the hospital the very notion of 'going home' has been completely off the table. He now loves in a small but lovely flat with a warden.
I think it's often The Crisis that brings things to a head, or in our smcase a series or worsening crises leading to the big one. My advice would be to share the load with your brother, offer help that you can reasonably manage, try your best to limit the headspace you give this and the stress it causes you and admit that there is only so much you can do.

They are allowed to make bad decisions. My dad’s overhead kitchen light was on the end of a cable held up by a number of g-clamps, he had all sorts of bodges around the house. But the OT was satisfied it was safe to live him. It was after he had a sudden loss of mobility and a series of falls (with lots of blood) that he was happy to move to a nursing home.

Toilet will be difficult though not impossible to keep hygienic in the long term. Do find out where they’re emptying it - if they’re chucking it on the compost heap you may have to take a tough line Attendance allowance for “extra” money that they may be prepared to spend on workmen. But really you’re waiting till the inconvenience to them exceeds their dislike of bringing someone in.

I'm in a similar boat.

My advice would be to let them get on with it. It's easy for people to list the things you should be doing. But trying to fix their lives can easily ruin yours, and what parent wants that for their offspring?

Could one of you take your mum on a weekend break - would she go on her own? And the other talk to your dad about fixing the plumbing and heating, maybe going in hard on the health aspect and how worried you are that they will get pneumonia, bacterial poisoning - maybe cite some statistics about people their age with inadequate heating being hospitalised

We did manage to get PIL to move but it was a huge undertaking. They needed so much help. MIL, the usual decision maker, was in the early stages of dementia and found it so hard to manage. But they couldn’t quite recognise this - things just kept going wrong, or they’d make decisions that just seemed weird to us, causing delays and expense. But they definitely did not want to hand over control to DH and SIL. They actually did want to move to be closer to SIL and in retrospect I’m so glad they did, but it was a nightmare at the time. FIL still gets grumpy about all the stuff we ‘forced’ him to get rid of: moving from a 4 bed house, to a 2 bed flat, this was inevitable!

It's very worrying but there is a hard limit on what you can do. Your father won't even let you inside, you can contact Social Services or the GP but he won't let them in either (probably won't even speak to them) and they won't force it. Presumably he wouldn't let a plumber in either but it's worth a try.

What usually happens in these circumstances is one of them will have a fall or be ill enough to end up in hospital, and the GP/Social Services will become involved at that point. Alternatively if you think it has become very obvious your father has dementia and no longer has the capacity to make his own decisions, you could ask Social Services to intervene. But if, as is likely, he refuses to engage with them or claims he doesn't need help, it will not be straightforward.

Similar situation , but inlaws already live in a small flat … on the first floor so FIL can’t get outside
However , they used to live in a maisonette with a spiral staircase , luckily the GP paid a visit and read them the riot act about how unsuitable the place was , ie if FIL collapsed in the living room , which was upstairs , how did he expect the ambulance / paramedics to get him out ?
So , that worked to a degree
But , I don’t think you will be able to get your parents to move , my inlaws won’t , not again ( luckily they own both unsuitable flats )
i agree with @PermanentTemporary keep nagging and try and get them the improvement that are needed