Am I right to regret ever sleep walking into becoming my partners carer?

[RakshaUK]

It started with getting up in the early hours to help him put his socks on to go to work. Then he developed leg ulcers, so showers became a performance because the dressing on the ulcers couldn't get wet, so I had to help putting a waterproof sleeve over them.
Then, about 15 years ago he started to develop a lump in his groin, GP thought it was a lipoma, said it could be removed when it became a problem. About 5 years ago - 2020 it was limiting his mobility to such an extent he couldn't walk from his disabled parking space to his desk (they did look at moving his desk under reasonable adjustments but it wasn't thought to be reasonable because they IT dept needed to be able to communicate easily). So the week before we went into lockdown, he took early retirement!
Basically he sat in his chair all day, wouldn't do anything else, and complained that he was losing his mobility. I pointed out on an almost daily basis that if he didn't use it, he'd lose it. GP sent a lovely chap to try and motivate him, he'd agree to all the tasks, then not do anything about them.
He's been referred to 3 different surgeons with regard to the removal of the lump (which is now so big it hangs like a good sized pumpkin between his knees), one took a look at his belly, which hangs infront of it after losing about 5 stone, and declared it was a pannus not a lipoma!
We've since moved and our current surgery are trying to get a MultiDisciplinaryTeammeeting together, including him, and me to act as his advocate, since July! He's spent 4 weeks in hospital with cellulitis.
What is really getting to me is his attitude towards me. E seems to do as little as possible and leaves me to clear up after him.I'm not one of nature's nurses, I feel like a caged animal listening to his moans and cries, and of course he must feel worse...
So WHY WONT HE DO ANYTHING ABOUT IT?
Even his nurses say he's got to be a squeaky wheel and on the phone to the GP Surgery every day. He does nothing to help himself, or me. I'm 65, older than him, with my own mobility issues (I use a power chair outside if I have to), I'm also type 2 diabetic and recently diagnosed ADHD and Autistic. I also have many incidents of trauma in my life which haven't all been put to bed. His nurse today suggested he make me a cup of tea every day (I have a shower stool out there to sit on when I'm cooking or washing up that he could use) doing that would double his step count for the day!
He passes wind, and doesn't apologise. He leaves shitty finger prints every where (he will go to the toilet for poos, but doesn't wash his hands) Wees he has to do by standing up while I shove a washing up bowl underneath him (the lump means he sprays wee everywhere and dribbles if he's anywhere near wanting to go when he walks) He can't wear underwear or incontinence pads because of the lump, trousers are a thing of the past, so he has a blanket across his knees to hide everything.
I like our house, i like sharing it with my two dogs and two cats. I have just had it up to here with being his carer.

We have a local charity that fosters animals in the short term. One of my team has looked after everything from cats to hamsters while the owners are in hospital.

perhaps that’s an option while you find accommodation?

He needs a care act assessment if they want a package of care. Also OP could have a carers assessment for support for herself.

So instead of doing what the GP suggested, and having the lump removed as soon as it became a problem, he took early retirement and then decided to slowly kill himself, to your detriment? This isn't a relationship, OP; you are being treated like a serf.

If I were you, I would be calling and writing to all healthcare professionals involved, saying you are not prepared to be his carer any more and he requires more care than 1 or 2 home visits a day. Call the GP/council every day with whatever the latest issue is and highlight the wider problems it causes (like rats). List everything you've listed here. Then, separately, reach out for help for yourself, detail everything you've said here, explain the toll it's taking on your own mental and physical health.

No, you shouldn't have to live in a garden shed. If he wants to just sit in a chair 24/7, he can live in the shed and carers can see what the situation is really like when you're not there to pick up after him, take him to the toilet and clean around him.

I know you love your animals, but it's your life or temorarily living without the animals (which perhaps you could visit, to ensure they're fed each day?).

Hi op,
Stop doing anything for him - call social services or tell the district nurses you are separated from him but will remain in the house or the annexe - tell them they need to provide carers to cook for him wash him etc. You need to be consistent and boundaried with him and social services.
You do not need to do it. I feel for you.

I would completely refuse ro do anything for him. This is absolutely grim, hes doing nothing and just waiting to die because you do everything for him. I would see if he can go into a care home in all honesty, there are rules protecting the house if one needs a care home. Speak to a solictor and social services. Get him out of your home.

One of the big issues here is that OP’s ‘partner’ is not doing all they are capable of to look after themselves. He’s been told to make her a cup of tea every day - so he’s capable of that - but he doesn’t. He could DEFINITELY wash his hands after using the loo so I’ve no idea why he doesn’t do that - it’s beyond disgusting.
OP is probably doing more for him than is essential because he demands it. If he were living alone, he would be expected to try and manage to clean up his own mess - or at least try to and co-operate with showering etc.

OP - can any of your sons help advocate for you with social services? Or have a serious chat with their dad? Something needs to shift his mindset.

Could you go and stay with any of them for a night or two? Take the dogs and leave a timed feeder for the cats. Tell social services you need a break and give your partner their number.

Hope you find a way to make things better x

It's not fun being the carer of a partner, it sounds like he has given up, personally I would call adult social services and demand help, let them come and see the state he chooses to live in and ask for respite help, awful as this may sound you need to scream and shout that you need help and him being in a care home will be the break you need, make sure they know how ill and stressed you are, tell them what the worst day looks like for you so they can see how bad it really is

I've not been made aware of any reason, apart from his weight, it's a chicken and egg situation. The lump lies underneath what they call a pannus, or apron of skin left when he lost weight some time ago, under Drs instruction (which i think he misunderstood and carried on for too long, ending up with gallstones). Losing more weight is going to extend this pannus, but the Drs have told him he has to loose weight, and finally he's believing them.

To be fair, the GP who saw it originally said it could be removed when it became an issue. It was about the size of a walnut then.

To be fair, the GP who saw it originally said it could be removed when it became an issue. It was about the size of a walnut then.

But it's been YEARS since then!

Losing more weight is going to extend this pannus, but the Drs have told him he has to loose weight, and finally he's believing them.

So is he still obese? How much does he weigh if he's lost 5 stones?

We own it between us. I'm happy with the house, I have friends in the area. Two of my sons are about 2 hours drive away, the 3rd doesn't drive but is on the same train line as us.

My husband would never act entitled like this if he were in a similar situation. My husband is amazing and as a result, I would give up absolutely everything to care for him.

In your situation… I would leave.

Omg the leaving of shit is UNACCEPTABLE. He is capable of washing his hands. Do not accept that at the very least.

I think you should be selfish. And look out for yourself. Men never find themselves in this situation.

I think you need to be the squeeky wheel, and tell your doctor you can no longer live with him, his self neglect is causing rat infestation and putting you in danger, you are vulnerable yourself. His toileting issues are a mental health problem, you don't have the physical strength to care for him.

You don't have to move out of the area, just move away from him.

The question is, are you going to divorce him or are you looking for practical advice and ways you can stay together?

There is nothing to stop you getting a divorce on the grounds of unreasonable behaviour.

I know your life is awful but it's coming across as a 'moan' where you're unwilling to do anything to change it.

Either you push like mad for his surgery and he changes his behaviour, or you divorce him.

You don't seem willing to accept that as an option.

Is there a charity in your area that could help you? Specifically for women. There is this in Scotland https://swanscotland.org/about-us maybe they could point you to something in your area?

Yes, but in addition he has what i believe is a genital lymphodema (Google it, but be prepared, it ain't pretty)
He also has sleep apnea, but refuses to use the machine provided.
There is no will (it was going to be done when we moved here in 2023, but he quickly lost all mobility after that) the house will come to me, and by dying intestate, I assume the balance will be divided between our 2 sons, they both have far better jobs than we ever did and dont want for anything.
I'll be getting his private pension, plus my State Pension in May next year, plus I also get PIP, so should be fine financially when something happens to him.

But that was my point, OP. As soon as it became larger and started impacting his ability to walk, he should have had it removed. He's now let this go on for years and refuses to do anything to help himself.

We aren't married

His got a pannus and what i believe is a genital lymphodema.

This is kind of how I was hoping it might work.

So is your plan to try and outlast him? (No judgement; it's logical given the financial state of affairs. It's just a very hard option to live with.) If so, would it be easier to try to live separate lives? Keep up your own friendships, do whatever you need to for your own health; but stop doing anything at all for him.

Does the house have two full bathrooms (ie including both toilet and shower/bath in each)? If not, can you check to see if the local authority would help add another near whichever bedroom your partner is in, due to his mobility issues? Then you could keep at least have some respite in your clean bedroom and bathroom and leave him to his.

If you don’t separate, get a will sorted. There are will companies that do home visits.

This is such a sad situation, OP. You should not be expected to put up with this. His care needs are not being met if his toileting plan is you you to stick a bowl underneath him as he dribbles. If he is unable to wash after pooing. If he is unable to use incontinence pads and wear clothes.

If you refused to do the bowl thing, what would his care team put in place instead - there would have to be more frequent visits or some other use of pads.

His bedroom (I assume you don't share one) should not be out of bounds for the cleaner. I feel terribly sad for you but also for him if he is sleeping on urine and shit stained sheets.

If he will need extra care following surgery, is there a way to use that as him being in residential respite for a while afterwards rather than being discharged back home? Are there further adaptions to the house that would make it more possible for the 2 of you to live alongside one another separately? A 2nd accessible wetroom or something?

I don't think that you living in a shed in the garden without a kitchen or bathroom is a solution. But perhaps it could be a retreat for you while he has carer visits so that you don't have to cope with their increased presence?

I am so sorry, OP. What do your son's make of the situation? Are they able to do any of the pushing for a medical plan that your DH doesn't seem to be bothered with and which you are understandably at the end of your patience with this.

He doesn't sound independent enough for sheltered accommodation.

He can't wear pants or trousers, therefore he can't really go out.
It's not really appropriate for him to even answer the door to the Tesco man.

Really it sounds like he needs a care home.