Elderly parents living in uninhabitable home

[redcess]

Posting to try and get some thoughts on what to do, feel very worried but completely helpless.
My parents are in their 80's and are physically very well considering their age.
They have been living in the same house for over 60 years, and in all this time have never once had a contractor of any sort to do work on the house. My dad (87yrs) was very capable at diy and literally did everything, built new kitchens, bathrooms fixed the roof, sorted out any issues etc.

However it has become clear in the last couple of weeks that there are some serious issues with the house, central heating not working (some work around set up with elec heaters) hot water not working for several days (although as with heating he seems to have fixed this but for how long I don't know), and perhaps most worryingly the toilet is not working and seems major issue with pipes so is not something he will be able to fix (using camping equipment instead as toilet...).
I'm stop reeling from finding out the extent of the above, and do not think that they can continue to live in these conditions.

My dad, is probably on the autistic spectrum and has for his whole life been a very difficult man to interact with. He has no friends, and has alienated all family over the years except for myself and my brother. He and my mum live a very isolated life in their own bubble. My mum is very submissive and just goes along with everything my dad says. I have regular but fairly limited contact with them, partly because I am no-longer allowed inside the house (since the pandemic dads paranoia of catching covid - but also I suspect a way of controlling my seeing how much the house has deteriorated)
To add to the issues I am also concerned my dad is showing some signs of early dementia.

In an ideal world we would like my parents to move out of the house into a much more suitable flat /bungalow. Whilst not rich I think they would have the money to pay for rental if not able to buy somewhere. My brother suggested this to them, and had some examples from estate agents of possible ideas. But my dad just flat out would not entertain the idea and claims that everything is fine. If it were just my dad on his own I would be tempted to leave him too it, but it is my mum I am most worried about. She is 83 and could still have a good few years and a decent quality of life ahead of her. But not in the existing living arrangements she won't . It feels like things are starting to go rapidly downhill for her.

Could anyone suggest how to progress this to get my parents into suitable accommodation? Do you have a similarly 'difficult' parent who you have been able to reason with?
What is the point at which to involve social services and what if anything would they be likely to do?
Any help would really be appreciated

I'm really sorry to hear this and I can't offer helpful advice because we have a very similar situation in our family that we are struggling with. My parents are a similar age but with worse health issues, living in a huge old house with lots of maintenance problems both inside and out. Same issues with 'difficult' relationship too. We have had to accept that for our parents it's too late to persuade them to move, it would be too much upheaval at this stage. We did try for a long time but it ended up damaging our relationship and I think they are just too old and ill to be able to make the change now. We are now focusing on supporting them to get repairs done , making phone calls, arranging visits etc and doing what we can ourselves. It's difficult for you though if you cant get into the house! I also happen to have lots of time at the moment, I won't always. It's a difficult stage because they are not in such a bad state of health that they would accept paid help around the house for laundry, cleaning etc but they are at a stage where everything tires them and seems overwhelming. Part of what we've had to accept is that they are adults able to make bad choices. I suspect that a crisis at some point is going to force some action and I've begun to accept this reluctantly because the situation was driving me a bit loopy with worry! It doesn't seem like the sensible approach but in our unusual family it's all I feel able to do at the moment. I love my parents but sometimes feel jealous of families where parents happily downsized to a bungalow in their early 70s! Good luck OP and I will follow for any helpful advice.

@redcess assuming we are both in the UK it's interesting that we are both awake at this time! Constant low level worry 😟

You need to get in touch with social services and explain that you are concerned that they are in a dangerous living situation and no longer have the capacity to manage the maintenance of the property to a safe standard. The heating and plumbing issues could be fatal over the coming winter so don't wait, this is urgent. The property should probably be sold to a developer to be gutted and renovated, unless you want to buy it yourself, but they will need to use this asset to pay their way. You are right that they need a smaller and more managable home

Honestly? I think you prepare yourself for the inevitable crisis and deal with that as best you can when it happens.

has your dad ever done anything because someone else told him to? Or out of consideration for your mum? Has she ever put her foot down and insisted on anything being done ?

They don’t even let you into the house when you visit and are using a portaloo rather than calling a plumber? I can’t imagine how you would get them from where they currently are to preparing to sell / buy / move house.

I’m sorry op, I agree with @Moorlander . Unless your parents have seriously lost capacity, they have the right to make their own bad decisions.

You need to call social services asap.

I'm guessing there's no POA set up?

Where are they emptying a portaloo?
I definitely think that needs sorting first.
We have had some rows with my 92 year old df about different issues.
What we learned is to prioritise the major issues and let the small stuff go.
The good thing is that once a job is done he forgets the upheaval.
He had a new boiler recently, workmen in and out all day. That evening he asked when he was getting his new boiler!

They should have a needs assessment by Adult Social Services, but tbh if they would be self funding, SS don't really bother. GP assessment too on health side. However, you cannot force them to do this.

You might be able to persuade them on the grounds of applying for Attendance Allowance. This is a non means tested benefit to enable people to remain independent, they could use it for repairs to the loo to start off with.

Do they each have PoAs in place for Finance and Health & Welfare?

If they are totally uncooperative, you need to decide if you are prepared to help and to what level. It can be helpful to have a list of emergency contacts and then run through a few 'what if' scenarios and plan for those.

Also joing the Mobilise and Carents fb groups. Lots of help and support there.

I think that the most important thing here is for you or your brother to get inside the house and see for yourself what is happening if you haven’t done so yet. If they have admitted to no heating, hot water or working toilet the reality might be worse.

Do either of you still have a key? If so could one of you meet them and take them for lunch or something? Whilst the other one checks over the house?

I will add here that if your dad is showing signs of dementia it would probably be worth checking the boiler yourself to make sure it isn’t just switched off or water to it turned off. The same with the toilet.

In your position I would find a way to get the toilet working again irrespective of whether they move house or not. If you think that your dad will refuse someone in the house you could try thinking outside the box.

You could get a company out to do the drains from outside and see if that helps? Or get a plumber out whilst they’re out? Or just turn up white a plumber and insist on coming in.

With my elderly grandma who was similarly difficult I found that apologising afterwards for fixing something was much easier than persuading her to do it, any upset was soon forgotten, and she was usually pleased with the change.

I'm sorry OP, this sounds hard and I 100% think this could happen with my parents. Wishing you the best of luck with it and sorry I can't offer any solutions.

I think you need to give up the idea of them moving - they have capacity and there’s no way they can be “forced” into that. Plus if your dad has early dementia, it will be hard for him to learn the layout of a new place, how to cook there, where the bins go etc.

Fixing the current place seems more likely to succeed and I echo the previous poster about one of you sneaking in to check things out.

I'm with @Moorlander and @ForthegracegoI. You are (understandably) thinking that getting them out of this situation will make things much better. I'm afraid it sounds unachievable in itself, plus they will be miserable.

I am sure you feel responsible for them, plus you probably have friends whose parents have made a choice to move which has worked out. But your friends didn't make them move (whatever they say), their parents chose to. Thats the difference.

I agree you need to pick your battles. It sounds like getting them to accept a visit from a plumber to look at the toilet and heating would be a battle well worth fighting. So start today. Ask locally and find a couple if plumbers, preferably older ones who are known to be nice. Get them on side, explain the situation and the importance of tact.

Then phone calls. Go and see them even if they won't let you in. Keep nagging away. Assume it will happen. 'When's a plumber coming Dad? I've got one. I'll send them round. Of course you need a plumber. Why not?' Keep badgering every day. Make it less annoying to have the plumber than not.

If that sounds impossible - imagine how stratospherically impossible it would be to get them to move...

I'm so sorry you are going through this. My elderly brother in law is like this and we have failed so far to make much progress.
With my Mum, I literally found a retirement flat to rent and moved her into it, with the promise that she could move back at any time. Did the house up and sold it when she was ready

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

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.

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!

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

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?

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.

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.

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.

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.

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 just bookmarked your post @hatgirl thank you.

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,

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