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.

This is so true! Its important to remember that A) Narcissism is a character strategy that exists along a continuum from relatively healthy to very pathological. B) there are many kinds of narcissists including covert/martyr narcissists who fet their need for validation and emotional security met by sacrificing publicly for someone or something. C) both people in a relationship can be narcissists in their own way. D) a codependent relationship works for both parties even if they seem to spend all their time complaining about the other.

OP, I've been thinking about you and your son all day.
I can't speak for your son, but I wonder to what extent his experience would be different if you were putting the energy you are currently directing toward your FP toward supporting and advocating for your son? And investing in yourself ‐might his OCD be exacerbated by an innate, if subconscious, awareness in your son that you are both enmeshed in this codependent family system with your male friend? Is your son, through his OCD, reclaiming some control in response to knowing, on some level, that your lives are being controlled to a devastating extent?

When a person has extensive care needs, you can call for a meeting of adult social care, primary caregivers and next of kin and GP to discuss how best to meet a person's needs. You can call such a meeting, and if your DP is genuinely as unwell as he says, he should welcome a multidisciplinary approach.

I'm attending a meeting this evening of really lovely women survivors of DV. I'm going to take you and your son with me (-in my thoughts, won't mention you or this thread, obviously) and send some of the warmth and courage generated your way.

I think this post is absolutely spot on.

I'm curious- Him doing things for you - sorting your maths for you - does this involve having any oversight into any of your financial affairs?

him liaising with your landlord was not only completely unnecessary but was very infantilising. You didn't want him to do it, you didn't find it helpful. So why not just tell him to back off?

Reading this, the situation is awful. Two things stand out to me.
First, your lack of professionalism regarding confidentiality at work. I don’t want to pile on, but how would you feel if you knew there was a silent third party listening in on calls to colleagues/others? It’s an outrageous, and illegal, invasion of privacy. With serious implications if found out. The fact that you’ve allowed these professional boundaries to be crossed indicates how far removed from identifying and acknowledging unacceptable behaviours you are.
Secondly, regardless of any exaggeration of the truth, coercion, manipulation or even if there is no adverse intent to this man’s behaviour (difficult to believe), he is clearly mentally fairly unwell & with very skewed thinking. Has he ever been offered counselling regarding his medical condition? Is he medicated for anxiety? It is fairly normal to be offered both upon a serious life changing diagnosis, as a way of coping. What would happen if you became ill? If you were involved in an accident & were not able to provide the ‘support’ you do? It’s unsustainable.
I’m really sad for you. He appears to be a sinking ship determined to take you down with him. Awful.

Looking in from the outside, you seem unusually worried that something awful will happen to him if you aren't available 100% of the time, doing absolutely everything possible to manage his condition/diet/mental health/son.

It seems like he doesn't want to do anything that gives you any free time, any time when you're not with him or supporting him. Why is that? Why doesn't he want you to have time to recharge? Have time to get support for yourself? Why is there always an emergency when you say you need an evening to yourself?

I would really suggest you have some counselling to work out why you're drawn to this unhealthy set up.

I'm not saying leave him, because clearly you don't want to do that, but unless you deal with this guilt you say you'll feel when he dies, you're going to waste 10 years of your life with this bloke and potentially devastate your life with guilt for many years after he dies too. Surely any loving partner would want their other half to go on to live life happily and guilt free after they die. Why aren't you talking to him about how he's making you feel? Why isn't he therefore taking control/responsibility of his condition so you don't feel guilty about missing something?

It seems very much like he's trapping you in this relationship by using his illness to keep you with him 24/7. Any free time or notion that you might want something different is responded to by an upkick in support needs, therefore directing your attention straight back to him. But he can't possibly be ill enough to need carers or supportive accommodation, or hospital, or medical professionals, or other family to support him; no, only you will do.

@cakedup he is having you on . Blind people manage to live alone and the disease you mentioned is no way qualifying him for daily phone calls . I’ve got diseases more serious than that and don’t get a yearly phone call ! He has got you exactly where he wants you , it’s abuse and you just cannot see it . He drinks and smokes which is what he shouldn’t be doing and has you not doing your job properly because of ‘germs’ which is pretty irrelevant in the scheme of things as most people with that condition live a virtually normal life .

You sound depressingly like my ex-MIL. She’s been with a horrible and abusive man for nearly 30 years. She hasn’t been allowed to work, see her friends or do anything unless approved by him for all this time.

He is now quite ill and has her running around after him despite the fact she is now in her 80s. He doesn’t pay a penny towards anything as he says he can’t afford it so she has to manage on her pension. But he has the cash for a new car every couple of years.

The family have tried on many occasions to get her to leave him but she thinks the sun shines out of his arse and he’s the cleverest man alive. He’s not, he’s just an utter bastard who has made her life a misery.

I can honestly say I don't feel I'm getting anything out of this. I like it when I feel I've helped him I suppose.

But this is not me at all. I'm an introvert and like a quiet, peaceful life. Hate dramas being made out of nothing.

I think my problem might stem from low self esteem fir whatever reason. He makes me feel loved, needed, like I make a difference, and he thinks I am beautiful, intelligent and funny. I know I shouldn't need this from him. But I genuinely feel socially awkward, slow to process information, clumsy in actions and words, ugly....in one sense I feel like so what, that's who I am. In another, he sees good qualities in me and yes, I do find that appealing.

So you do get something out of it then

You are NOT responsible for this man. What he's asking from you is outrageous.

You need to tell him no, enough is enough.

Even a stopped clock is right twice a day. In amongst all the lies and manipulation, he's picked out that you are beautiful, clever and funny. You are also unselfish, compassionate and kind.

If Terry Two Phones can see this, anyone can. You don't need him, for maths or for anything else.

If he helps with your maths, how does he see to do so?
And does he see your bank accounts?

I hope he pays for his own shopping, at least.

In another, he sees good qualities in me and yes, I do find that appealing

But all loving partners and husbands see good qualities in us.

That's a given.

Another man will also see your good qualities, OP. You need to break free of this man. You can have another relationship with a different man.

You're only 52. Stop wasting your life.

In his head! He is a very clever and knowledgeable person.

I dont pay for anything, I barely have enough to live on myself. He pays for everything, i.e we eat out once a week and all other social activities. He is a bit old fashioned in that way.

If he dies, it will not be your fault nor your responsibility.
He is a boyfriend, not a live in partner, not a husband ! he is also not your child.

I have noticed you are choosing which replies you are accepting and many that you are ignoring.

you are enabling and allowing his behaviour - your choice.

Oh come on - you can't go into schools but now we find out that he can go out to dinner once a week? Either we are being fooled or you are....

Well yes, I get something out of the relationship. But not out of being some Co dependent martyr sacrificing my sanity.

I've had so many insightful replies on here, but it's difficult to respond to all nor necessary

I wonder.
I wonder if that is just a little bit too close to the truth.

I also wonder if you're actually completely unaware of the situation you're in.

How do you square that with him being so immunocompromised that you can't do your job properly?

Hi OP. I currently care for my DH who suffers from Lewy Bodies Dementia. At times it can be very hard. I get you are not married and only you can understand the nature of your relationship and what went before. For me I made promises. For better for worse and in sickness and in health and that means that commitment will always be there. Practically there are things you can do. It is important to rest when you are providing care. Are there family who could help for some nights in the week? Could he pay for some form of care? Depression often accompanies illness. I understand for my DH that he still has enough awareness to realise he is ill and will get worse and that this is scary and he may at times lash out at the person who is closest. It is important to get your partner to work on this and understand he cannot do this and that you are the last person he should be lashing out at. Could you speak to his GP? DP is on medication for depression as part of his therapy and this works well.

https://cks.nice.org.uk/topics/giant-cell-arteritis/

Factural info here

I am gobsmacked at his diagnosis. Reading the prognosis, it appears easily managed by medication and in no way life threatening. It’s unfortunate that he’s partially lost his sight prior to diagnosis. But it doesn’t make him incapable and is something manageable by the sound of it. I know first hand just how horrible it is to be in constant pain and neither of these things justify his keeping you hostage. It appears he was just the same prior to diagnosis...

If and this is a big if, he is genuinely is called daily by the GP, this will very very likely be to appease him. At best this will be classed as for mental health reasons. In reality it’s more likely this is just about managing him. In this scenario, I’m guessing the GP practice would have put this in place as he took up a so much time harassing the practice, insisting on constant appointments and so forth and this is an exercise in time management.

You only have to look at how much of your time he monopolises, how he wouldn’t let you go to hazard a guess at how much GP appointment time he will possibly have wasted. The daily reports you so caringly type up will likewise 100% be guaranteed to be useless, unnecessary and another compromise to appease him. I wonder if these even get read. Possibly someone in admin glances over them rather than the GP then if needed to be logged for legal reasons, they are put on file.

This is the only conclusion I can draw seeing as the diagnosis isn’t life threatening and the GP doesn’t worry about him in the slightest if he fails to answer. I’d say it’s more likely his not answering is a bonus…

He’s really done a number on you op. When I read threads like this, I always think of the song, ‘A puppet on a string’. And as someone said upthread, it reads like you’re his narcissistic supply. I cannot imagine he loves you. From the description, I don’t know if he’s even capable of love. I imagine it is rather difficult to find someone subservient, malleable and trusting enough to be also willing to put up with his disgusting house, heavy drinking and smoking. Whenever he finds someone so selfless as to fulfil this criteria, he really isn’t going to let them go without a gargantuan fight.

So, if you don't get something out of it, why have you made it your life for the last few years?

I believe you do get something out of it, but that you're also mentally unwell yourself and maybe lack the self-awareness to understand the situation you've found yourself in.

It's all very sad, especially for your poor child.

I have tried small boundaries but will keep trying. I was meant to go to his place last night but told him I needed time alone. He then went downhill with health. Then apparently his ds got in some kind of trouble so he was calling me up. And he is on the phone to me now, barely verbal, retching (nausea/vomiting is a symptom), saying he needs to stay awake as he is waiting to hear from his son to let him know he is OK. So can you imagine how difficult it is for me to get off the phone right now?

Missed this. If you can't see that he is punishing you for not going to his then I don't know what to say.
He could pay for a care pendant so you don't have to sit on the phone with him for 16 hours a day. He could voice note his diary, that's another load off you.
You don't want any practical advice though. Look, if this is the life you choose then you need to get your head down and get on with it.
He controls every second of your waking day and he doesn't live with you. How he's managed that is beyond me.
Once he passes you will have no one. You've turned your back on everyone else remember? All because he pays you a tiny bit of attention. In return he gets total control.
I suggest at the very least you start working on your own self esteem. You won't be able to tell him this because he won't like it. He will behave much like the post I've quoted above. Reach out to your mother for a start.