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.

He's been very peculiar for a long time and he's been controlling your and DS's behaviour since Covid, at the very least. He's not right in the head, even if he is superficially intelligent, and he has dragged you into his madness.

If he dropped dead tomorrow, how would you REALLY feel?

I have seen paperwork from his consultant. I've sat in a hospital appointment. He is not making it up.

Absolutely devastated...that's the truth

I really hope the op is reading. And even if she doesn’t think ok I’m dumping him, she thinks ok I will sign back up to work at schools, I will cancel the evening ‘open line’, and I will leave his at 10pm. Even those is a huge change. I think that will help you see the light more op. You should take your son on a weekend away.

Situation changed as illness got progressively worse.

He had one main relationship with the mother of his children which lasted over 10 years. Had no interest in dating after that.

It's possible for him to be both ill AND an abusive, controlling, manipulating, charming, lier.

You sound dependent on him and this is something he has actively cultivated by isolating you from other sources of company. If you are the kind of person who struggles without company you will be more vulnerable to this.

He had one main relationship with the mother of his children which lasted over 10 years. Had no interest in dating after that.

So he has children too?! How are they? Does he have a relationship with them? Why are you the only one at his beck and call all day every day?

I appreciate what you are saying and I am listening. It makes sense the way you put it.

However, I do not neglect my ds in any way. I am always there for him. But this thread is not about him which is why I have barely mentioned him.

I think you must be codependent on each other in some way. It's clear you are getting a huge amount of satisfaction from all the "care" you "need" to give him.

Imagine you wanted to have a private talk with someone important to you, but their partner was listening in. Constantly

They are all young adults, and he has a good relationship with them, speaks to them every day. They have no idea of the extent of his illness and he doesn't want to worry them as he they have their own stuff going on.

However, I do not neglect my ds in any way. I am always there for him.

Except for having two phone terry in the background literally every time he wants to talk to you.

You have stuff going on too op. Or you would but you’ve given it up as you’re not allowedo have stuff going on.

You have your own stuff going on! You have a job. And a son. And friends, family, a life!

And you are neglecting to give your son a private, safe space in his own home by having this man on the phone constantly.

What kind of responses were you expecting to this post, OP? What was your motivation for posting?

But doesn't this strike you as odd?

Could it be because his family will start asking questions he can't answer? Like what illness is it, why are you still smoking and drinking, what's your care plan and why do you live in a hovel when your health is so precarious? Don't his family ask why you're always in the background of his calls when he's speaking to them? Because it's weird. Most people would ask about that.

Nothing he's saying to you makes sense.

I have to admit I am curious as to who monitors him overnight if his health is that bad he has to have an open line with you during the day. How is nightime managed?

You said earlier if your son comes in the room you will mute a call to be present for him.

thats not the same as being available for him. He has to seek you out and the other person’s presence is always there. Plus some of the time you aren’t even at the house. Plus you limit going out for fear of germs. Presumably your child goes to school so you could be doing your job role again. No difference in exposure risk.

Am I being unreasonable to ask your much quality time you spend with your son without your partner being there or on the phone? How often do you seek your son out for a chat and hang out?

I think YABU for being an unpaid carer whilst working FT and letting this person take advantage of you. So what they are ill ? That’s literally what the whole healthcare and social care system is there to support.

if he is ill enough to need 24/7 supervision he is ill enough to organise care. Pride is not valid here. Hold some boundaries and see what happens. Sending you strength- you deserve better.

please stop visiting a dirty house. Don’t drive back at midnight and stop these phone calls during work including lunch break so you can have some peace!

Harsh words here, OP, but this man is a noose around your neck.

His illness will get worse and you will likely end up his full-time carer. You've already changed so much of YOUR life to meet his needs and wants and not in a good way. You've become isolated from friends and family, you've lost happiness in your work and you are wearing yourself out to suit him!!!

I appreciate you love him but it is meaningless without MUTUAL care and respect.

As someone who is very familiar with women sacrificing their needs, wants and, overall, happiness, to look after ill men, my advice would be NOT to waste the the oncoming years of your life.

As you seem intent on staying, you need very FIRM boundaries and to get your life back on track.

Good lord.

he’s been on deaths door for 3+ years and his family don’t know about it.

Reading through your posts OP I highly doubt this chap is ill in any way.

He has control of every aspect of your life.

I don't really. I feel heartbroken he is going through this and so I feel sacrificing some of myself to help him is the least I can do.

I should say he supports me too. He is good with phonecalls and maths (my two weak points) so helps me out with that kind of thing.

However, sometimes he over helps to the point its not necessary. For example, when I was having issues in my bathroom he liased with my landlord. Yes, it got the job done, sooner and extra work on top. But the number of phone calls and him relaying information to me and the time it took out of my work time...I think I would have preferred the normal route where it took a bit longer and got the basic job done.

I wonder if he would pay to have his place deep cleaned and then for a cleaner to come in to maintain it. At least then it would be a nice environment for you and there would be other spaces in the house for you to retreat to, which might make the experience a teeny bit more pleasant.

I am like you, op, very sensitive to the suffering of loved ones, sometimes to the detriment of my own well being. I once heard a radio programme which described this as an actual condition. A woman described driving across the country just to help someone which would sound like madness to “normal” people. It is very hard when you are like this. People tell you to do things that are nigh well impossible - like walking away from someone you love who is suffering. I can’t do it. I read on MN all the time about people who are able to do that and wish that I was one of them.

it would be good if people had suggestions that would really help people like us rather than just telling us we have low self worth (we don’t).

You're not listening to anyone. It's not worth talking to you. You have blinkers on. I imagine any close friends and family must find you very frustrating.

Sorry I also don’t believe it’s a GP calling every day..

also the fact he has you CONSTANTLY on his phone means that he all the time knows where you are and what are you doing.

what is his condition??

I would say that no adult child (bar exceptional circumstances) truly has a good relationship with their parent if they feel the need, or feel obliged, to speak to them everyday.
You have been fed a whole load of BS @cakedup and you need to wake up.
You have demonstrated time and again that your judgment is absolutely gone so you can't possibly judge how well your son is doing. As others have said, he will feel neglected and second best.

Have a look at that article in the Guardian that a previous poster mentioned.
I found it by typing "dogs bred with problems people feel needed guardian" into google. It's utterly heart breaking but I'm afraid so very accurate. Have a read then ask yourself, have I got myself a two legged crippled dog that needs me?