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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Aibu to feel I can't cope with dh illness

799 replies

cakedup · 30/03/2024 15:53

I am menopausal so happy to consider this as a factor. Also ds is having mh problems which has been very upsetting.

Been with dp for 5 years, live apart, love him very much. In last couple of years he was diagnosed with a condition which has had a huge impact on his life. I'm living in constant fear that he'll die (possibility of happening anytime and he is unlikely to have longer than 10 years).

Very difficult to manage as not living with him. He stayed with me during covid which caused big problems in our relationship so don't think we can ever live together. But he shouldn't really be living alone, he is not coping. Doctors say he does remarkably well considering the pain and discomfort he is in, he is a very strong character, not a man flu type of person at all. But in a way he makes things worse for himself, many times he has been advised to go to hospital but doesn't.

I stay at his house twice a week. I hate his house, he is a hoarder and it's filthy. I am confined to one room + bathroom. Because of his medical condition I try my best to accommodate him being calm and happy as agitation can bring on symptoms. This means putting my needs aside a lot of the time.

When I'm at home, I have the phone line open to him from 8am - midnight, making sure he is OK, not having seizures etc. I feel I get very little privacy because of this. He is there in the background when I am on work calls, talking to my son, eating lunch etc etc

I used to love my work but no longer do because a lot of the public facing stuff which i loved I can no longer do due to dp having low immunity. I have not spoken or seen friends in over a year and had very little contact with family, theres just been no time. Not helped by the fact that dp constantly criticises both my work and friends, and specifically my mum as they have fallen out (her fault afaic).

He is understandably fed up with his illness and lashes out at me sometimes. For example when he was with his gp and wanted to ask me a question, i didnt get back to him for 12 minutes (i was in a work meeting) so he shouted at me.

Otherwise when able to be, he is very caring and loving. He will do things to make me happy. But feel like most of everything is on his terms. For example if i want to leave his house by 10pm on sunday night so that i travel home for an hour, get a few things done and get to bed at a decent time. But often he doesn't want me to leave so I stay till midnight. He is dominant as it is, wanting things his way and now because of his illness its hard to say no.

He has told me this is no way for him to live, he was extremely able before illness and now has little quality of life. Even talked about assisted dying. It is heartbreaking seeing him like this.

OP posts:
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7
SquishyGloopyBum · 30/03/2024 19:45

You say you can't do the work you love because low immunity but then the cinema? It makes no sense.

He sounds awful op. This is no life for you.

Crunchymum · 30/03/2024 19:47

And yes why have you given up a people facing role in order to protect his immune system when he happily goes out to crowded places?

Did he suggest / ask you to change your work role "for the good of his health?"

arethereanyleftatall · 30/03/2024 19:48

Op. I wonder what has happened to you in your past 52 years that has resulted in this person who values herself so so low, and puts someone else's needs way way above her own.

Allwelcone · 30/03/2024 19:50

Re-draw your boundaries to what YOU find acceptable, sometimes menopause can make you feel invisible so its important to stick up for yourself! Close that open phone line, re contact yr froends etc.
If it means increased risk to him, so be it, sadly.

JPGR · 30/03/2024 19:55

If you want to stay with him you need to make a few changes. The open phone needs to go. He can text if he needs you. You deserve some privacy.

zeibesaffron · 30/03/2024 20:07

SecretDoor · 30/03/2024 18:33

I am a HCP and cannot think of any condition that fits this set up

This - I am wracking my brains trying to think of something/ anything that fits this condition.

OP read back what you have said - is it any wonder your Mum has fallen out with him? He is controlling your whole life!! How can your son live in a house where he has no privacy- he is more important than any man why are you prioritising and protecting a controlling and manipulative man who has you at his back and call, and not your son!! You said you had good times but also said you lived together during covid and it didn’t work - it didn’t work for a reason.

If he is that ill - he needs to get more care - speak to his Dr/ medical team tell them you can no longer help and walk away. I am sorry but your son needs you and you need to rebuild a happy, healthy life!

Workawayxx · 30/03/2024 20:14

The one thing that’s baffling me is why you need to be on the phone all day every day. Has this been advised/required/approved by hospital/medical professionals? It just seems like a convenient way for a controlling man to, well, control?! And he shouldn’t be moaning about your work at all. It’s none of his bloody business and he wouldn’t even know about it if you weren’t on the phone to him all the time. This is so beyond too much. If his illness is so bad, he needs carers to check on him during the day. Have you had to call an ambulance or similar if he has had a seizure or is it “just in case”?

Delphiniumandlupins · 30/03/2024 20:29

He's too proud and independent to follow medical advice or pay for the care he needs. But not too proud or independent to bully you and expect you to cater to his every whim? Yes, his illness and life sound shit but is your involvement actually making this any better? Or are you simply enabling him to not make better arrangements?

UncomfortablyBig882 · 30/03/2024 20:34

You have one life OP. Every day you spend like this is one less day on earth which you will never get back.

He doesn't sound nice. You are not his carer. He has engineered it so that you have no more friends and no longer enjoy your work. The whole setup honestly sounds horrible.

Your life sounds absolutely and utterly miserable. Your son is 19. This should be a time where you get some of your life back, do some fun things, take care of your health, progress in your career.

LiveLaughCryalot · 30/03/2024 20:36

You have made yours and your sons life very small for this man. Why have you turned your back on friends and family for someone you have dated for 5 years?!
If he has money then at the very least he can pay 20 quid a month for a care pendant. Then you don't need to be on the phone with him from 8am to midnight. There, that's one problem sorted.
I've got to say, I'm 40 years old, work in healthcare and have done since I was 18, have cared for and supported a fair few people through a fair few illnesses. I have never met anyone who needed... this kind of care. How do you know if he becomes sleepy if he's on the phone and you can't see him?
You have a DS who is struggling. This fucked up dynamic will not be helping him. Watching his mother dedicate her entire life to a nobheads wellbeing.

hattie43 · 30/03/2024 20:36

Aquamarine1029 · 30/03/2024 17:03

You must have absolutely no sense of self-worth to be putting up with this shit. No one who values themselves would be in a "relationship" like this. This is very, very sad.

Absolutely this .

It is sad he is unwell but he's not helping himself , how is he going to deteriorate with this condition, will things get even worse for you .

Ghostgirl77 · 30/03/2024 20:36

You’re not his partner, you’re his carer. Surely you want more from your life than this? Walk away.

Mumof3confused · 30/03/2024 20:38

He drinks and smokes inside the house in front of you, won’t get medical attention when he needs it but YOU can’t see friends/family because somehow this impacts his health, and you have to keep your phone line blocked for 14 hours a day so that he doesn’t fall asleep and he listens in to everything you do.

Oh, and his redeeming qualities are that he can sometimes (pretend to) be caring and he is funny.

Dear God.

WhereYouLeftIt · 30/03/2024 20:41

"It feels heartless to put myself first at all with all that he is suffering."

And there's your problem, right there. You somehow feel that you must sacrifice anything you have, anything you are, for - what? Who taught you this behaviour? Who told you that your needs come after everyone else's wants? They were WRONG!

You are sacrificing yourself for a selfish self-destructive wanker of a man. Stop it. Turn your attention to your son, your job, your friends and family, and most of all to your self-esteem.

RickyGervaislovesdogs · 30/03/2024 20:43

What’s actually wrong with him?

BruFord · 30/03/2024 20:45

Haven’t read everyone’s responses, but I did see someone mention a care alarm.

Instead of being available by phone 16 hours a day, you need to insist that he gets one. You can help him research the options, but he has to get one, because your current 16 hours a day setup isn’t sustainable.

Insist on it, don’t take no for an answer. 💐

Riceball · 30/03/2024 20:46

Have you tried to talk to him or compromise about all this op? Would he be responsive?

Meatymeatytimetoeaty · 30/03/2024 20:49

Honestly, there are so many red flags: he lashes out at you, he's controlling your behaviour, he's overly critical of your work, friends, and family, he's isolating you. He lives in filth and has somehow made you responsible for his most basic functioning.
This doesn't sound like a 2 way relationship. Has it always been like this?
It's sad that he has serious medical issues, but you can't set yourself on fire to keep him warm.

PonyPatter44 · 30/03/2024 20:52

What happens if you need to make a phone call during the day? Do you have to cut him off and then call him straight back?

I am sorry but I am with the others who say he is manipulating you for reasons of his own. I think you should push back against some of his more unreasonable requests (the phone, the late finish) and see how he takes it.

Thing is, you actually have a lot more power in this relationship than you think. He is bullying you, but you can walk away from him any time you like, and he will have lost his free carer and shag. I suspect he is hardly in a position to go out and get another woman at the drop of a hat.

oldgreysquirreltest · 30/03/2024 20:55

cakedup · 30/03/2024 17:00

Yes it is insane isn't it. But its a way of making sure he is OK and alive and not on his own when he is feeling like shit.

It's not your responsibility to make sure he is ok, alive, and not on his own when feeling like shit. I have some experience here from living with a depressed partner. Soul destroying. In the end, I just wasn't willing to sacrifice my life for him.

RainbowZebraWarrior · 30/03/2024 21:02

cakedup · 30/03/2024 17:00

Yes it is insane isn't it. But its a way of making sure he is OK and alive and not on his own when he is feeling like shit.

No, no it's not. It's unnatural, unreasonable and entirely OTT. If you think this is normal, then you have been, and are being controlled.

Pootle23 · 30/03/2024 21:04

So you can’t see friends etc because of his “low immunity”

but…he can go to the theatre and cinema… are you hiring the whole place?

He smokes, drinks and is a hoarder, controls who you see, controls your alone time and you wish you could have more separate time.

In a normal and healthy relationship you would want to be with him and he would want to keep you safe and feel loved, he’s not doing this.

Personally, I would run for the hills!

Springcat · 30/03/2024 21:04

Sometimes I read a post ,and I think ,what is wrong with us women ,that we get ourselves in such situations.
Situations that bring us little to no joy and a huge amount of stress and worry .
Then I think ,would a man do the same ,put himself in the same situation,be as selfless as this woman
Fuck no , of course they wouldn't
But they are happy to use us while we make their lives easier and our lives harder .

cakedup · 30/03/2024 21:04

Sorry I am going through responses gradually...yes he is definitely not well, I write up a diary for him every day and send to his GP and GP calls him every day, sometimes on loudspeaker and have accompanied him to hospital appointments.

OP posts:
LaughingCat · 30/03/2024 21:05

cakedup · 30/03/2024 17:54

And he is clean in himself, bathes every day, well presented. Just has a weird set up in the home.

This is such a difficult one to grasp…you obviously love him and just as obviously recognise the clear issues here.

You used an interesting word earlier to describe your relationship with him - ‘entwined’. I’d like to respectfully suggest ‘enmeshed’ instead.

I know what it’s like to love someone so controlling, how they convince you that boundaries are unnecessary, unhealthy, even. How they persuade you that constant contact is for your peace of mind, not theirs. How they start to redraw your priorities so you first let go of time with friends, then family in deference to time with them. Because you love each other and get to spend so little time together thanks to work or other commitments…surely you don’t want to give up what little time you have left together, do you?

When things go their way, they are the most wonderful of partners - warm, thoughtful, caring, funny and with a capacity for love that outweighs anything you could ever have thought to experience. If you texted them at 3am on a Tuesday to complain that your pillow’s too hard, they’d cross the country right then and there to bring you a softer one without a thought. But as soon as you do or say something they disagree with, they become cold, distant or angry…and so disappointed in you. You obviously didn’t care after all. They’d do it for you. They’d cross the country with a pillow in the middle of the night. Why won’t you just do this very reasonable thing for them?

When you’re with them 24/7, it’s suffocating, unsustainable but when you’re apart the thought of not being with them at all…the wonderful, caring version of them at least, it’s too heartbreaking.

If any of this resonates with you…OP, it’s probably not his fault, exactly, but it doesn’t make it right. I’m not saying leave him, I’m just saying to make a list of every interaxtion that happens between you and work out what you’re OK with and what you’re not.

If you’re not OK with an open mic then get him one of those button alarm thingy that calls you if something happens. There’s remote sensors that can text you if he has a fall or a seizure. They’re really good now. If you don’t want him to chain-smoke at you, then say you’ll only come round if he hauls himself outside to smoke. If you think his house is a mess, be clear that he needs to get help in to clear it if he wants you to stay over. If you don’t like how he talks about your colleagues or work, then be clear that you don’t appreciate it. If you want to go home at ten, then set out the schedule to him and stick to it. And if his negative reaction to that is not ok for you, then tell him that you won’t accept that behaviour from him.

For every interaction, ask yourself ‘is this ok?’, and if it isn’t ok, then say so. Set and maintain those boundaries because you might not live together but he’s still clearly controlling your every decision and your emotional state, even in areas he has no influence in, like your enjoyment of work.

Even separate, you’re still enmeshed.

A wise man once told me that the submissive partner draws the picture while the dominant one chooses how it gets coloured in. However, you are living in his picture, not your own and held there through guilt, duty, love, friendship, history and that awful knowledge that he’s dying, so how can you not?

But you can care about him as well as look after yourself. One does not negate the other and the latter is extremely important. Do you want to get to 62 and realise that you’ve not done a single thing for yourself in a decade? That you don’t even know what your picture would look like? Only you can answer that question.