Aibu to feel I can't cope with dh illness

[cakedup]

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.

Not all that much, in 2 hour stints at most and it takes him a while to recover. It's a neurological effect.

Ask yourself… if the roles were reversed, and you were the one with the condition, would he be looking after you?

That is your answer. This ends when you end it.

You both aligns like a treat 🥴 why are you even with him if he is such a burden to you. You can happily have all the time you want to yourself if you are not with him.

Sound *

I'm not sure what my problem is 🙁

I think I have a problem with boundaries, especially if I love someone I can't bear for them to be unhappy. My sister has said in the past that I'm too forgiving, too soft, I over empathise.

I dont think of him as a burden though...just that I can't cope to fulfil all his needs without compromising too much of myself. I would hate to have all my time to myself, I'd feel so lonely without him.

Aside from the clearly abusive relationship that you're in, what about the impact this is having on your son? Is he still living with you?
You said he's 19 and having MH issues. Your OP says you'd been with 'DP' for 5 years and that he stayed with you during COVID. Does this mean you moved the guy in, with your 14/15 year old son when you'd only known him a year, at most?
You mentioned you'd not got on well when living together, which can't have been nice for your son.
Is it possible all that has had an impact on your son's MH?

And this is why he’s with you. He wouldn’t stand a chance with a woman with good boundaries.

He is preying on your good nature and exploiting your most caring and loving aspects.

Why won’t you explain what the illness is? Does it feel disloyal because from what I’m reading, he has shown very little care and loyalty to you. He literally wants you to stop earning money so that you can be even more under his control.

Yes he absolutely would!! But the difference is I wouldn't want to depend on him so much or expect so much of him.

You martyr yourself. That's what you do. You think sacrificing your own life and being miserable has value. You are accomplishing nothing but wasting the time you have for someone who doesn't give a shit about you.

FFS, op, stop lying to yourself. This man would NEVER look after you the way you do for him. Not in a million years, not with a gun to his head. You are his domestic appliance. You are here to serve him. Not the other way around. Until you wake up to this, nothing we say will matter.

Please explain why the doctor phones him every day.
What happens at the weekend?
Does an on-call doctor phone him?

When it comes to my son, he knows there is a line he can't cross. Whenever my son comes into the room, even for a chat, I put him on hold, no question. If I need time to help him (ds very dyslexic so I have to help him with forms, uni stuff etc) and it's the only thing he won't really get in the way of. When ds mental health went really downhill he was very supportive which helped me to support ds.

To ask how he is, ask questions about the diary entries, to discuss blood test results etc.

OP you sound very kind and caring, but it’s worth looking at counselling for the issues with boundaries. It might be time to take small steps to implement some boundaries over time. First up, say your work has made it clear you are no longer allowed to have him on speaker all day. Tell him you will touch base with him before work and then call him after work. If he carries on, just stay neutral and validate it’s hard but you will call him later. After a few weeks of holding that boundary, slowly implement another small one. You CAN do this but you just need to accept he will push back a bit at first. You CAN remain calm and ride it out.

Is it a private GP who phones every day? There’s something not right about this I’d look into it more get number call comes from etc. I smell a rat

'A lot of the public facing work I used to love I can no longer do because of dp's immune system'... But you also say he is well enough to go to the theatre and cinema, or to live in a filthy home.

Surely you can see these are much bigger threats to his immune system than you being around people when he isn't there?
It sounds like you maybe don't fully see how completely this man is controlling you and taking away the things in life you love the most. Maybe because he has lost his freedom. He has taken yours.

The main question that jumps out is why you think a relationship with him is all you deserve or are compelled to keep going? The 'tweaks' you hope for sound more like a hostage negotiation. And he may not even concede to allowing them without being angry / shouting at you?

You are doing the job that multiple carers should be doing. Not you, not during your work day at all, not all of your precious free time.
He hasn't posted so there's no point any of us trying to advise in trying to change him. He hasn't expressed a desire to control you less.

All you can do is seriously reflect on why you believe your own needs, life and wishes must be sacrificed so completely.
You don't have to be nice/ perfect/ dutiful/ miserable for ten years or more. You are free to decide how much or how little of your life you want to burn away for this man.
The first thing I would do is get back in your public role. Maybe when you see your real self reflected back at you by mentally healthy people, you will remember more of who you truly are and who you want to be.

' Whenever my son comes into the room, even for a chat, I put him on hold, no question. If I need time to help him (ds very dyslexic so I have to help him with forms, uni stuff etc) and it's the only thing he won't really get in the way of. '

that is not what you said in your opening post:

' 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 '

No, it isn't.
You are being massively manipulated.
Bet you aren't allowed in medical appointments to find out the truth either.
Save yourself and get away from this insanity.

There is an interesting article in the guardian today about the relationship between dog owners and the unhealthy, nervous, artificial breeds that they live. The author points out that all the features (poor breathing, anxiety, weak hips) that are a problem for the dog also make the owner feel really needed by the dog. And all the acts of service, rewarded by the dogs love, reinforce the dynamic.

There is really no mystery to why you are sacrificing yourself for this literally wretched, selfish, filthy man. His enormous need (too proud my ARSE!) , his demanding and controlling needs, his utter incompetence all lead you to enter this anxious caregiver—> reward—>demand cycle that is largely indistinguishable from the cycle of abuse or the way cults take over the lives of their adherents.

Bullshit do you need to help him write his diary ! He can use a voice to text app to dictate whatever (absurd) information his doctor needs.
Bullshit do you need to “keep an open line” or “wake him up”—if he can not live independently he must go to an institution/rehab or whatever is available.

You were not born to give your one wild and precious life to this craptacular, chain smoking, aggressively jerky man who can’t do more than pay lip service to your needs while bad mouthing everyone and everything in your real life. For two days a week of actually seeing him and squatting on the fringes of his all important hoard while he drinks and smokes himself to death? Good God, woman, have some self respect.

Thank you so much for sharing your story and I'm so sorry for what you are going through. It's so kind of you to post and so valuable given the similarities.

He hasn't been told he is dying as such or given a time frame. But similarly, he is at very high risk of having a brain bleed and also stroke which both his parents died of when they were younger than he is now.

I admit that gp calling every day does seem excessive, I'm not sure what to say about that. I have overheard some of the phonecalls, other times he'll just tell me about them or ignore the phone ringing (he has 2 phones) and say its the gp but doesn't feel well enough to take it.

He says he is not afraid of dying. He just doesn't want to live like this, where he is not able to live as he did previously. He even talked about taking his life, not in a depressed emotional way, but in a practical logical way.

He drinks and smokes heavily every weekend because its something he enjoys. He knows it's not healthy but also feels, why not, it keeps his stress levels down (very important with his conditon) and so what if it makes his health worse if there is seemingly no cure.

He would rather die than have a panic button or carer etc. He wouldn't even use a pill box I got him.

Your last paragraph...such wise words, you are absolutely right.

Yes, sorry for the confusion. I didn't mean I put him on hold in the telephone sense, just that I make him wait. If ds announces he wants to talk to me about something, I'll get off the phone to him. But sometimes he is on the phone but not completely responsive I.e he gets bouts of drowsiness. So a lot depends on the situation.

No not private. I can't imagine he would make it up...that would be appalling.

Re his home situation, I stay there twice a week and so spend 4 days there. I'm finding it so uncomfortable...my home is the opposite, I am actually a clean freak!

He has two phones, previously due to work reasons. So many people saying gp calling every day not believable...maybe I should ask him to arrange an appointment with me there to discuss managing his needs so I can meet his gp.