Parents unable to look after themselves - running out of energy to help

[dinosaursroar1]

Name changed for this because I wouldn’t want anyone to figure out who I am from previous posts as I know my mum would be mortified if people knew. And sorry - I think this will be a long one.

My mum has a progressively worsening condition which has reduced her mobility - for the past 3-5 years she has been classed as disabled (a blue badge holder) and has extremely limited mobility - she can’t really bend, can’t stand for a prolonged period of time, needs to use a crutch to get to the loo or upstairs etc etc.

Because of this she can’t really clean, struggles with cooking and needs help with getting food shopping and such things. My dad isn’t in perfect health (has a heart condition) but has just become so incredibly lazy. About everything. He refuses to wear underwear - his clothes constantly smell of urine and often have skid marks. No matter how many times my mum and I have begged him to wear underwear because he is ruining clothes he just doesn’t do it. Bottoms are all bleached around the crotch from urine, tops are stained from food because he can’t be bothered to sit upright for meals or at the table so just lounges back and shovels food in, dropping forkfuls on his clothes. Most of his clothes are pretty much ruined. He wears clothes for days on end (which adds to the smell as days of food, sweat, urine building up) - he claims he does this to save on washing. I have asked him so many times to just put on clean clothes each day and that I will come once a week and do their washing but he still doesn’t (I also arranged at the start of the year for someone to do their ironing although that had to stop during lockdown).

Over the past 3-5 years I have cleaned their house countless times, including probably at least twice a year doing two massive deep cleans to try and deal with all the problems but they never keep on top of the most basic things - bathrooms have urine marks all over the floors and walls from my dad, bathroom and bedroom doors also have urine marks on them (he doesn’t wear pyjamas and despite being suggested a number of times can’t be bothered to take a bit of loo roll to dap the end after a wee so I think it’s bits of wee dribbling off on his way back to bed). On my last deep clean I had to spend two hours scrubbing down his bedroom walls because they were covered in urine and blood (cuts on hands from gardening and I’m assuming he’s felt along the wall in the night getting out of bed for the light switch). It’s honestly disgusting and I’m just running out of energy - both physical and emotional to deal with it / him.

My mum is so embarrassed about the state of the house she hasn’t wanted a cleaner. I have scrubbed the house from top to bottom (I took two weeks off work last year and spend 8+ hours every day at their house to get it clean / organised) on a few occasions so then she wouldn’t have that initial embarrassment but then every time it’s done they back out and say “oh, we can keep on top of it now”. I’m only suggesting a cleaner to do the downstairs and have said I would carry on doing the upstairs as would be more manageable then.

I don’t know what to do - I work (albeit self employed and work from home so more flexibility than most I realise) and have an almost one year old DD. DH has a job with long hours and our limited free time is quite precious to us. We have a cleaner for a couple of hours every other week for our own house - we viewed it as buying ourselves some extra free time to spend together. I love my parents but I don’t want to spend hours every week cleaning, especially given how my dad has become - it just feels pointless to clean for someone who has no intention of taking even basic steps like not leaving blood smeared on a wall or not dealing with, as an example, some spilt coffee grounds by just sweeping them onto the kitchen floor.

I do all their food shopping and any other shopping they need (presents for people etc), I do pretty much all their washing (I don’t iron because I loathe it but pre lockdown had sorted someone to do that), if I’m over at theirs at the right time I make their meals for them and I honestly don’t mind doing a bit of cleaning - changing bedding for them or cleaning a bathroom / dusting a room etc but it’s quite a big house and the way they now live means I would either need to spend 3-4 hours every week to just keep the house vaguely hygienic and tidy and that would be after spending hours getting to a starting point again. Plus all the other time for shopping, clothes washing and other bits and bobs.

It feels like no suggestion I make to make things better is acceptable other than me spending hours a week cleaning for them. I know it sounds selfish but I just don’t want to do this when there are other options available - I’m not someone who enjoys cleaning and even if I did cleaning up after someone who won’t do anything to keep a house even a little bit tidy is pretty soul destroying.

There is no issue with affording a cleaner, they are very comfortable and have plenty of disposable income. I feel bad complaining because they are and always have been really good to me and incredibly generous - I guess I feel like I owe them. But I also feel pretty pissed off by now that they won’t just spend £30 or so every couple of weeks to have a cleaner for a couple hours to keep on top of things so I’m not having to do it all. If I try to broach the topic and say things that I think will resonate with them like I don’t want to have to take those hours away from spending time with my DD to clean when we could just hire someone to come do that their answer is just “oh, don’t do it love. We’ll be fine” except, they’re NOT fine. My mum hates the house and because of her disability basically feels trapped in a house that is filthy (unless I’m going and cleaning every week). It’s obvious she’s not happy with it but also refuses to just pull the trigger on getting a cleaner (I would organise this, I just need her to say that it can happen).

I have done everything I can think of to help them, on multiple occasions, but I feel like I must be missing something? I feel like the whole situation is just emptying me of any reserves of energy but I don’t see how I can just leave them to get on with it. I’m starting to think there must be something seriously wrong with my dad because I can’t fathom how he can have turned into this disgusting person who is just always coated in filth and is destroying his home.

It’s just this constant burden that is always at the back of my mind trying to think of how I can fit in doing everything that needs doing and still do the stuff I need to do in my own life. Last Christmas I spent every weekday for all of December either cleaning or shopping for them so the house was nice for Christmas - I was on maternity leave then but there is just no way I can continue doing this level of cleaning long term. It was a pretty miserable Christmas for me, I spent almost a month cleaning, most of the actual day cooking (DH and a cousin did help in the kitchen!) and barely spent any time with my own baby. I obviously haven’t been able to go clean for them the last couple of months because of lockdown and I’m already in tears at the prospect of what will face me and how long it will take to sort out. I just don’t know what to do.

Has anyone had any success in dealing with situations like this? Or if you’ve stopped getting involved how do you deal with the guilt? I can’t not go to the house because they need help with shopping etc but I really don’t want my DD being around an environment that would be so dirty and unhygienic, which is what it would be if I didn’t clean and they won’t get a cleaner.

Unfortunately if they have capacity they can refuse to have input from social services.

I'm in a very similar position with my grandfather who is happy to live in a pigsty, wont let anyone but me clean it but wont keep it clean. So I got social services involved who after assessing my grandfather told me that he had capacity and he was choosing to live like that.

@Floatyboat he’s always been a bit of an absent minded professor type so whilst he is forgetful it’s not a new thing (and I suspect a lot of it is that he just tunes people out so hasn’t listened to what has been said) although is probably a bit worse - my mum says he sometimes tells her the same story a few times but otherwise he seems much the same. Still reads newspapers, listens to the radio, well informed about current affairs. He’s never really been one for logic / mental puzzles like sudoku or crosswords but if we’re ever watching a quiz show type programme I think his recall of knowledge on topics he knows well (sport, music, science) seems the same. Apart from not seeming to be bothered in looking after himself / coming across quite lazy about a lot of things he doesn’t seem THAT different.

Sorry my posts are a bit harsh but in my experience of dealing with elderly people, you do have to be quite firm. Why would they want anyone else to do it when they have you? My gran was perfectly happy for my mum to run herself into the ground shopping and cleaning for her twice a week. But once she was told that was no longer happening, then she did accept help from external agencies.

Honestly please get both of them both assessed. With degenerative conditions, it's often difficult to see how much someone's needs have changed. It's can be hard for children to accept that and that they can no longer do everything either. Cleaning feels like love but it isn't really. Your time is better spent talking to them and looking after your baby.

You also might want to think about things like power of attorney if you don't already have it. Age Concern is a good resource.

@Clymene not harsh at all! Everyone has given so much really useful information. I think as well there are almost so many different issues now that it’s hard to know where to start and replies are very much helping me make a list of things to do / look into

This may be completely undoable, unwanted or inappropriate, but could your Mam move in with you for a bit, paying for a carer to pop in to help her? That way your Dad could be sorted out without your Mam having to be there to experience the embarrassment. It sounds awful. I agree with the other posters; it sounds like something is up with your Dad.
Whatever approach you take, I really hope it works out for you. You sound like a very caring daughter.

Unfortunately, nothing will change unless you stop doing these things for them.
At the moment, they have a solution. It's you. They like it, rely on it and it makes it easy for them to reject other options. They know that you will sort it again and again and again.

I know it's hard and it feels cruel but in order to help them (and you!) you have to stop helping them.

I was in the same situation with the cleaning. Except I never did it. I hate housework with a passion. I nagged about a cleaner as the house became filthy. Dad agreed with me but Mum wouldn’t have it. In the end she said “Are you saying the house is dirty?”. I just said yes. Two weeks later I’d found them a cleaner.

Like you I did all the shopping and laundry for years, as well as managing their finances. The trouble is that it’s insidious. It starts with little manageable things and it escalates.

I wish you all the luck in the world. It’s an awful situation. 💐

Rather than put grab rails in yourself, did you ever have a community occupational health assessment?

What is their savings amount? When your Mum's mobility became worse, did any sign pisting happen from the GP Practice Manager?

Or did your Parents block that?

I think that you do need to get tougher with them. Then take over the refitting of the bathroom, getting a cleaner etc. If they won't then consider the vulnerable adults route. You can get advice from Help the aged.

If he’s only late 60’s I think you need to consider self neglect which is a separate condition.

It doesn’t make you a bad person to not want to spend hours cleaning an adults shit and piss stained clothes/house.

If your dad hasn't always been like this I do agree he eneeds to see a gp.
What would he say if you pointed out your mum is effectively a prisoner in his filth? Would he feel any guilt? Don't let your mum be there to downplay it.

As a pp said it’s really worth looking into power of attorney as you can only get this done whilst they have capacity. Also if your DF does have full capacity he can unfortunately live how he wants even if it’s not the right decision. It’s very hard and unfair on your DM. AGE U.K. is a great resource. As others have said maybe say you’re not going round them anymore with your DD. You can’t run yourself into the ground for them.

It would be worth contacting age uk for advice- also look at attendance allowance for your dm, non means tested but she might agree to that being spent on a cleaner. Get age uk to help you with the forms.

I work in social services so have seen this sort of situation although your dad seems quite extreme. If he hasn't always been like this, it might be worth a discussion with the GP. Self neglect is considered a mental health problem, but it has to be pretty extreme e.g. Think risk to health/life. I think you need to take a step back and see this as less of your problem, as hard as that is. It's not a nice situation, but the more you try to resolve it probably the harder it will get. Assuming there aren't any mental health issues going on, they are grown adults and they have to be responsible for their own lives. You can be there to help, be a ready to do things once they want it to change. Don't try and tell them what you think they should do but do tell them what you are doing, for example "I don't want to bring DD round because the house is a mess". It's up to them how they resolve that. Speak to age UK, carers UK etc but for advice on how you look after yourself and keep yourself sane.

Can you book a cleaner to go with you once or twice? Clean together then step back and have the cleaner go alone?

My late uncle was very reluctant to delegate any of the care of his wife, cleaning, or maintenance of his huge garden, until we cunningly put it to him as doing a big favour to a local chap to give him some gardening work.
We had been doing what we could from a distance, but quite honestly were hard pressed to keep up with our own houses on top of full-time work. Money was not an issue, it was admitting that he couldn't keep on top of everything himself. Before her illness, Auntie had kept the house in immaculate condition, so I think embarrassment came into it as well.
But they grew to like the gardener and enjoy his visits, so when the gardener mentioned that his wife was looking for cleaning work, Uncle could justify this as helping somebody out when they were a bit down on their luck.
The scenario was not the same; there was no self-neglect, but would this approach give a different perspective?
The lifting of lockdown, when it comes, may be the chance you have to raise the subject of bringing/not bringing DD over again, in the context of how badly unhygienic things have become while you are not propping things up.

I'm in complete agreement with what @'Pangur2 says, it's what I was thinking. Your poor mother must be finding it horrendously difficult and she must feel torn and probably quite loyal to your dad and unable to tell him what's what. It could shock your dad into realising how bad it is, too. So sorry OP. You are doing so well and you mustn't keep martyring yourself like this, he's got to be stood up to (in the nicest possible way of course).

OP your parents are late 60s. I won't be retiring until I'm late 60s. And you could be dealing with this for 20+ years.

I'm in the same boat, and I've got to a point where its affecting my MH (especially with extra pressures of coronavirus) and I've been seeing a counsellor.

Boundaries. I can't do xyz because I don't have time/need to spend time with my own dc/I don't want to/I pay someone to do it for me so I'm not doing yours/other suggestions from pps.

They CAN afford to get help but they WON'T while you're busting a gut to help them. I agree with pp that you need to get adult safeguarding/gp/services involved.

Just wanted to offer you some support. You sound like a lovely daughter and they are incredibly lucky to have you. This situation cannot go on and will only get worse, I speak from experience.

I completely burnt myself out and nearly ruined my own life doing everything you are doing now, with increasing care giving. I begged and pleaded for them to get cleaners/carers etc. They always refused and would only let me help.

Your DF knows he isn't clean but his self esteem is at a point (whether thats from dementia or poor mental health) that he has spiralled down so far he simply doesn't care. This could happen to any of us.

Our situation didnt end well, things got completely unmanageable. There was no choice but for them to go into residential care. If the situation had been managed early then they could still be living at home with support.

I would have done a lot of things differently. I would urge you to really, really PUSH them into getting the bathroom sorted out as a matter of urgency.
Get on the phone and arrange some quotes when its safe to do so. I felt the same as you, feeling like pushing any more would have been bullying. But I really wish I had "bullied".

Just book the cleaner. Tell your DM that she can leave the house with you (if possible) or go into the garden with you and her GC when the cleaner comes and you will even be the one to speak to her/him (again, if possible for you). She doesn't ever have to see her so there would be no need for embarrassment.

She could even have one cleaner for the initial deep cleans and then use another one from then on. They would never know what it was initially like. You should not do any more deep cleaning when they have the ability to pay for the service.

You need to tell her straight that if this continues, social services could look at their living situation in the future and make decisions for them. Would they rather make decisions now to help themselves, or have the authorities involved later down the line because they didn't.

I found AgeUK really helpful and carers forum too. I really hope your DPs can work with you on this.

They just need to get used to the cleaner, my own parents need a lot of help and were resistant to getting outside help but once they got over the initial strangeness of having someone new in the house, they were fine with it, and are looking forward to welcoming them back once lockdown is lifted.

Why don’t you book a cleaner and be there alongside for the first few sessions, just say they’re there to help you. Ease them into it so to speak.

Op you are entitled to a Carers Assessment from your DP Council. I would highly recommend contacting them & chatting through the issues. They'll likely signpost to many organisations but that would be a step forward & also trigger an assessment for them from an OT. Even if they are over the DFG threshold, the OT can provide a layout plan for adaptation of the bathroom & loan equipment.
I do think the bathroom must feature at the top of your list as this could be a big barrier to DF managing his hygiene.
I would second the suggestion of making sure they're both getting their benefits, to then use to make life easier.
How about post lock down clubs? Men shed springs to mind for dad...
You can talk to their GP about your concerns - they just wouldn't be able to give you info back.

OP poor you. That sounds bludy awful.

Your dads personal hygiene sounds vile. To the point I couldn’t read all of your post as I was nearly bowking.

He’s a lazy so an so who clearly likes living like a slob. That’s fine, if he wants to live that way but then you’re just wasting your time cleaning up constantly.

There’s no excuse for not changing his clothes. I’d just leave him to it, he’s not a child! It’s a shame for your mam but he needs to consider her wishes too.

I’d honestly say enough is enough. They’ll need to get a cleaner.

Now that cleaning has been left for a few weeks , it's a natural stop for your heroic efforts. Just don't don't go back to doing it. Your mother now has to face up to the fact she really must hire a cleaner. And possibly some home help if they can afford that, for cooking and laundry or personal care.

If Mother suggests you resume cleaning her house , just reply "Sorry, I just can't do it any more now that DD is growing up. It's time for a paid cleaner. " and don't get talked into getting the house fit for a cleaner. There are companies that take on deep-cleans.

Re Dad , the big change in personal care, leaking and soiling could indicate developing dementia , so it would be worth writing to their GP with your concerns.

If your dad has those sorts of problems, talk to their GP and see if they have a continence nurse.

He may qualify for continence pads.

Does he have any idea about the cost of all the discarded clothes?

Does he have a wardrobe full of clothes he can cheerfully ruin before you buy more?

@dinosaursroar1 I absolutely sympathise. We lost my MIL 18 months ago, leaving my FIL alone for first time ever in his life. He is lazy beyond belief. The house is disgusting, we did start cleaning every week for him, but less than 2 days afterwards it was back to looking like a s**t tip again that we stopped. He goes to kidney dialysis three times a week, we went to visit the one morning before he went out, and his clothes were filthy. He just didn't see a problem. He wets himself regularly, and worse, we were on holiday with them before MIL passed, and he messed himself on the beach and sat in it until we went to the house we were staying at, and then under duress, showered after MIL lost her mind at him. He just doesn't care.
My DH does all his shopping, runs around after him for collection of drugs etc, and gets no thanks.
I just wanted to make sure you know its not just you, sadly. Sending love x

I feel sad for you and congratulate you on putting up with this for so long.

The virus has done you a favour (not very often we can say that!) and it is now time to withdraw from your parents and concentrate on yourself and your own family.

If it was me I would make it clear that I would not be returning to their home until they let you arrange cleaners/social services etc.

Explain how difficult it is for you to see them like that, but you have to prioritise your baby. When visiting returns you want them to see her, play with her, spend time getting to know her, but this won't be possible unless your DF is clean and the house presentable.

It seems a common problem, but it's preposterous that parents expect so much from you.

You need to steel yourself for some unpleasant times ahead in the short term, but if you keep saying the same thing, things will improve.

Good luck