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.

I wouldn’t be doing all of that for my husband and wouldn’t expect it of him from me. There would have to be clear boundaries in place. You are acting at his complete beck and call.

also where is your time for your son, or yourself in all of this.

you aren’t this person’s partner your his unpaid carer.

it is fine to feel at the end of your tether, I’ve cared for relatives at end of life and it’s awful.

but here here’s really not been a partner long, he smokes and drinks, his house is awful, there’s something not believable about his calls from the GP, he’s listening in on your life that should be private, you had to stop living together as it didn’t work out….

and this has no end in site. It’s totally unsustainable for you and your son.

And there we have it. This is fulfilling a need that YOU have. He has gradually dismantled your life and now there WILL be a big hole in your life without him. Start rebuilding your life and please try to stop living his. Difficult when you love someone, lots of guilt involved, but you are very obviously struggling, while feeling a strong sense of duty, as well as love. Have the replies you've received made any difference to your view of this situation? Please take care of yourself

DH, DP? Either way, call a halt to this 'relationship', which makes you a prisoner and overwhelms your life with care work to do and ill-treatment to endure.

Just stop. Now.

If you feel guilty, send your opening post to his GP and adult social services, stating you are withdrawing care services from 31/3/24 and will not be in touch with him again.

Then inform him of the same - by text if you like - and block. If he has stuff at yours, bin bag it, put it at the gate and tell him to collect it before the binmen come.

I feel claustrophobic just imagining your life, OP, let alone living it.

When you're on your deathbed, can you imagine lying there thinking "it was a good life"? Because truthfully, it sounds like this man has made you his personal slave and what you want/need isn't remotely on his horizon.

Set yourself free - step by step if you need to. But you personally and alone are NOT responsible for his health. He is.

Leave him to it.

I bet he hasn’t got such a terrible diagnosis too. Have you seen him have a seizure? Daily calls from GP I don’t believe. Doing nothing to help his condition- no why would he when he’s got you at his beck and call.

Have you ever accessed therapy for yourself? Because you really should be doing that! Girls get praised as children when they take on caring duties - younger siblings, relatives. Were you a young carer?

somewhere along the way your sense of self got lost - what it means to be you, what you stand for, what you believe, what you want for yourself. Sometimes it comes from childhood or adolescence and what that was like for you, sometimes it comes from relationship experiences . Do you come from a family where self sacrificing was normal? Hoarding? Addiction?

what is telling in your posts is the trivia and detail and narrative about your partner and why he can’t do the basics to support himself with the condition (engage with carers, alarms, the smoking and drinking) - there is nothing in there about your caring responsibilities as a mother to presumably a young teen when you met this man. Your poor son. It is heartbreaking to read. What story would he tell about him mum and the phone line?

if you have a job that involves visiting schools then presumably there is an element of confidentiality needed? How do you account for that? He doesn’t feel your job is worth it. What do you feel? How would you support yourself if you didn’t have this job? Retirement? Pension? Contact with the world ?

one step might be to start small and switch off the phone for short intervals building up
to a proper care system (assuming he medically needs that level if monitoring)

assuming you work for a LA or a MAT can I suggest you access your employee support team and request some counselling. A chat with Women’s Aid wouldn’t be a bad start either.

I can not imagine anywhere on this earth where a gp would call you every day. Sorry OP, he is taking you for a fool.

I would hate to have all my time to myself, I'd feel so lonely without him

this is what you need to be bringing to a counsellor.
OP there are ways of filling your time that don’t involve martyrdom to this degree.

There’s no way on God’s green earth that his GP is calling him daily nor needs a daily update of his symptoms.

I think he’s exaggerating at best, outright lying at worst. I suspect it’s a combination of the two.

This has to be one of the most fucked up situations I’ve ever heard of. You have no life and no privacy. The open phone line is absolute craziness. I’ve never heard of anything so ridiculous. If your employer knew that was happening, I expect you’d get sacked. How you’ve tolerated this I have no idea. You do realise that this is coercive control, don’t you? You need to get some boundaries in place and sharpish.

Where's your empathy for your family, who missyou and worry about you? For the friends who are feeling hurt and neglected? For your son who, when he wants to talk to you has to put up with someone potentially listening in to the conversation?

There's only one person who matters in your life. You're not being over empathetic. You're being selfish. You've dumped everyone who cares about you, to be 24 hour carer to this man who's made you drop everything and everyone in your life for him.

Well as you love him, and you enjoy spending all your time looking after his (made up) needs, then what do you want people to say?

I'm still aghast that you're taking work calls with an open line to this leech in the background. Id bet my house you haven't told the person at work that there's someone else listening in.

Let's hope you're not talking about data or anything confidential. If i did that at my work, had someone who didn't work for the company listening to every call, id be sacked.

He's mugging you off about the GP by the way. No nhs GP has time to call one patient every single day. You can't be this naive?

OP, could you read your posts back to yourself as if you were an outsider to the situation. Like all of us are.

Because so much of what you have posted, just makes no sense.

Firstly the GP daily calls.

Next, the fact that the GP is so concerned and calling daily yet has not suggested some sort of care plan, or assistance day to day.

You not be able to do your job as it could affect his health, yet he lives in what sounds like squalor and smokes and drinks heavily. Is he only doing this at weekends when you are there? Why isn't he concerned about getting drowsy after a shed load of alcohol?

He can't get stressed? Perfect way to get someone to walk in eggshells around you.

I assume what you know is only what he has told you. Does his diagnosis and the listed symptoms of this diagnosis add up?

Also, you have a ds who although is a young adult, does need your support. But you are only there for him 3 days a week.

Can you see how we are seeing this situation, from what you have said. It doesn't seem all right does it?

OP, I really hope this is not true. If it is, please find the strength to get your self out of this , your son will be off for uni and he is jeopardising your job, then it'll be your home. Reach out to womans aid.

That is an incredibly unhealthy dynamic, OP, but you know that already, and you've been told far more eloquently by PPs.

Leave him now. He's your partner of 5 years, you don't live together and most importantly you can't help him if he doesn't want to be helped.
You owe him nothing.
He also sounds very mentally unwell (the hoarding, the controlling behaviour, I suspect the lying about his daily chats with his GP...).

This man is making your life miserable and stressful, and you're letting down your DS who needs you.

Your loyalty should be with your DS, not with a borderline abusive bloke you've known for all of five years.

I don't know what disease he has. I've not worked out yet what illness a GP would ring every day for which makes me feel like you're being hoodwinked.

I've read all your posts and I suspect you're destroying your life for some miserable controlling man who has very little respect for you.

Stop torturing yourself looking after this man

Honestly, I can only imagine that it's the guilt of leaving somebody ill that's keeping you there. What are you getting from this relationship? He sounds like a selfish, mean, controlling, irresponsible manchild.

He needs proper support in place from the council and an emergency button/phone line installed. This isn't on you.

This doesn’t sound like a healthy relationship. The set up is not conducive to a partnership and you aren’t, truthfully, team mates. There’s a lot of resentment, you aren’t compatible enough to live together, you don’t feel he treats you well but blame his poor health.. I suspect if he was in good health you would not be sticking with him. I understand you would feel awful leaving him in the situation he is in, but equally this is no life for you and not a relationship that is bringing you any joy really. You don’t mention love… Can you speak to the GP or social services and see if you can help put a support package in place for him. You are entitled to your life and a loving relationship, that is regardless of his circumstances. X

Have you even read her posts? She's sacrificing her life to him! He is deliberately being a burden, when he could get more appropriate and professional support and not expect his girlfriend to be on the end of an open phone line from morning to night every day! Not to mention chipping in with criticism of her job, friends and family.

OP this is absurd. This man is completely taking advantage of you. Imagine your son describing this period to his friends or partner in the future. It will sound preposterous. People will think he's exaggerating.

I'm quite sure he would manage to swallow his pride about getting help if you weren't available as a free carer for him. Try telling him that is what is going to have to happen.

You are being abused op. This thread is honestly the most unsettling thing I've read on here. He is controlling you 24/7. I've never heard of anyone needing to be kept awake all the time and people needing to be on the phone with them every minute. Why aren't you putting your own needs, and your child's (!!!) over this abusive man's?
I actually hope this thread is a wind up because the alternative is too awful to even think about.

OP youre being a martyr. What are you going to do? You've had a lot of good advice

He'd rather die than have a carer, pendant alarm or even a simple pill box, but is happy to have the woman he loves living in a severely compromised way? That's really, really very fucked up.

I'm also another who doesn't believe that it's likely that an NHS GP will be ringing every day in 2024. They'd ask him to ring the symptoms diary results in to reception, or most likely to email or log them on their portal, and review them in their own time maybe once a week or two weeks unless he reported that there's something abnormal going on that he's concerned about and wants their advice on.

What would you say to a friend who described living like this with their partner?

I'm another one who just doesn't believe that the GP phones him every day.

Op, none of this is normal. You are making a lot of excuses for this man who has clearly manipulated you and is controlling you. You do not need to be on a live phone call fro. 8 till midnight...out of curiosity who is 'keeping him alive' by being on the phone from midnight till 8? You do not need to be at his beck and call....there is nothing his gp needed to ask about him that he couldn't answer himself. You do not need to sit in his smokey house putting your own health at risk. I would strongly suggest you get some therapy to try and help you realise what a ridiculous and unnecessary situation this is. If his health was really this bad he would have carers and I call bullshit on his comments of rather being dead than having an emergency alarm or all this 'logical' talk of dying....this is control op!!

Do you even know what his medical diagnosis is? I’m just wondering as you haven’t shared it.

I also agree this is coercive control. You should be getting away from this man, very far away. He isn’t terminally ill. He is slowly killing himself through lifestyle choices. His choice to smoke and drink also puts him at heightened risk of brain bleeds. He will have been made aware of this, yet he still chooses to chain smokes, to drink heavily. He also goes out when he chooses at a time of his choosing… and expects you to have zero choices in your life. He has taken complete control of you.

My bet is his symptoms will drastically improve if you do get away and he will be on the prowl for another victim to become his personal slave and punching bag.

Please, please wake up and realise what is going on. You don’t need him, you’re addicted to him... perhaps to the feeling of being useful, needed. What you actually need is to get counselling, to find a way to fill a gap in your life.

Edited to add link. https://www.medicalnewstoday.com/articles/317080