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.

The diagnosis of this guy’s major mental health condition is’nt really relevant but it might be useful to the OP because understanding it makes it predictable and ought to remove OP’s deep seated belief that she needs to be responsible for ameliorating it.
In my experience of people with OCPD it is very closely aligned with NPD—its really how some NPD people manage their fragile self identity and crushing fear of shame and exposure.

Like the hoarding O PD is very hard to treat. OP will not be able to fix this.

The fear of covid isn’t one that a reasonable person allows to dictate other people’s lives.

My youngest child has a life limiting condition. Covid has hospitalised her 6 times so far, three of those requiring ICU.

Her siblings still go to school. We take precautions where we can, and people around us are good at saying “we’ve got cold symptoms, maybe we should rearrange”, but you can’t stop the world from turning.

It’s very telling that he can go out and do things he wants to do but stops you doing the job you love.

Sorry, but judging by her replies I think the OP is beyond help and/or doesn't actually want any help and wants to continue living her life this way, which of course is her right.

Just lay it out for us now OP. Why do you think he is like this? We all know you are unwilling/unable to change anything about your current set up so just tell us, what do you think is going on here? Do you want help to get out of this OR this thread just for some weird martyr validation?

OP, it boils down to - do you want to be in a relationship with someone who makes you responsible for their health? Who listens in to you for 18 hours a day?

You do know, don’t you, that this is not normal? Manipulators and abusers are exceptionally good at convincing their targets that only they understand and can fulfill their needs. And reeling them back in if they show signs of wanting to break away. This is where you are now. We can guarantee that these little steps towards independence that you are planning will result in him being “not well”. This is not your responsibility. You cannot fix him. He and he alone is responsible for his stress reactions to normal, everyday events. And your partner making plans to see friends is a normal, every day event.

if you start a thread in relationships saying you want to separate from a controlling partner, you will get support that will help you through all the steps and guide you through “The script” as it happens.

Okay, but in the nicest way, so what?

I want lots of things but that doesn’t mean that everyone else has to change their lives to accommodate my wants and desires.

He will not die if you turn your phone off and ignore him.

How would you feel if your DS ended up "caring for" their partner in the same way that you are caring for your partner OP?

This is what you are role modelling for him as a guide to how to live his life and what is normal and acceptable within a relationship.

It's hard to accept but even though you are consciously putting your DS first and not compromising your relationship with him the relationship that you role model with your partner will be having a significant effect on DS. Probably DS is not complaining much because a) this situation is now normal for him and b) he can see that you are already under pressure and because he loves you he doesn't want to add to it.

The harsh reality is that even though you are going to great lengths to mitigate everything you can for your DS, he inevitably is still negatively impacted by your relationship. It will be tough to recognise this OP but once you do you can do something about it. It's not just you who deserves better it is also your DS.

OP I really hope this is genuine and this can help you because this is a long personal response.

I have been in a situation where my child started having seizures day and night and stopped breathing. I didn’t sleep properly for 3 years as I listened to her breathing over a monitor at night. She didn’t have thrashing seizures so the bed alarms were no good. She had loads of tests. Eventually the part of her brain that was the seizure starting point was removed. It is a traumatic way to live not knowing what/if tomorrow brings and the mental health for all our family was not great. You need help. Btw she went to every medical appointment, even on bad seizure days. She went to school unless she was really bad. And the GP never phoned her. We did have an epilepsy nurse that I could text and phone who was brilliant.

I wish technology would catch up to help. Getting a Fitbit shows all sorts of medical info and which stage of sleep he’s in. Or he could get a wellue O2Ring - this will vibrate strongly if your O2 levels go down to a certain level and would sent an alert to a phone (but only nearby unfortunately). Some tech reassurance may help your burden. He can obsess/have some control over the data or it might make him worse - I don’t know. He can have cameras in his house that link to your phone. Then you can check on him every so often.

If he is having seizures, then he needs more sleep. Lack of sleep will be a trigger. As is alcohol if he’s on epilepsy drugs. He can get a special aerated pillow for epilepsy so he doesn’t suffocate. Every time he falls asleep he could make sure he lies on his side in the recovery position. I don’t understand if drs have told him about this 20 minute rule then not followed it up with support. Could it be he is googling stuff and making rules up for himself?

When you go to the doctor, have a list of questions. Even better, give them a list of questions before you visit so that they can reflect on and give you the answers. Tell them briefly how you live as well (which isn’t sustainable).

An EEG will tell them if there’s unusual electrical activity but it’s all relative so he needs to keep the headset on for at least 24 hours and mark down everytime he feels off. It gets glued to his head and could be sent home with it on. I stayed up all night to monitor exactly what I could see was happening in Dds sleep so this could be a time you could really help. If you can’t manage this, the alternative is video cameras and staying in hospital.

EEG and MRI info will be looked at to see what’s happening. They are very few people who can analyse all the information so that’s a limiting factor in getting all the information and causes long waiting lists. He needs to keep every medical appointment.

One thing I would like to campaign for is to keep school and public toilets single sex so there is a gap at the bottom of toilet doors and a way of getting over the top if someone has collapsed against the inward opening door. Dd specifically had to use the girls toilets at school as it kept her safe. The government seem to be heading towards fully enclosed toilets in public as a preferred model even in single sex toilets (due to gender ideology) but this means there’s going to be a lot more medical incidents (and assaults) that aren’t seen until it’s too late.

So just switch it off. What's he going to do?

It wouldn’t surprise me if he was suddenly “well enough” to come to her house and harass her that way 😔

She appears to be mostly enjoying having this insane set up for sure.

"However he absolutely refused, no discussion except to belittle the project and my involvement.

I burst into tears and told him I was fed up of him putting down my work, friends, family. Told him I was unhappy, I can't enjoy these things anymore and that he should really care about that.

Then he got really ill and I started this thread."

OP, read your statement again. He is using his illness to maintain control over you. I don't doubt what he has is real, but what he is doing is morally wrong. He is selfish, self-centered and controlling. There is no way a mentally healthy woman would put up with his unreasonable demands and rules. You say you used to suffer from depression and that you currently have low self-esteem. Please get psychiatric help. Do the Freedom Program.NOTHING about this relationship is healthy for either of you.

What immediate family members do you have OP? I know you said your relationships have become strained, but I wonder if you can arrange a 2-3 day visit to any of them, with your son? This would be an ideal time to cease the open phone line & constant need to be in touch, and give you breathing space to really reflect on your situation once out of it. Just a thought.

Plus, I have serious concerns that any pushback from you re. setting boundaries may result in him taking more extreme measures to control you & reduce your autonomy. I’m specifically concerned he may be able to contact your employer & share details of conversations that he has overheard. This could result in termination of your position. It’s awful to think of this, but it’s niggling at me.

Does he have https://www.nhs.uk/conditions/polymyalgia-rheumatica/ as well?

I feel for you op, I think you have to pull back though & insist on carers etc. you’re going to push yourself (via him) into an early grave. It’s not healthy x

She mentioned he pays for all their treats and outings such as theatre, pub, cinema, and that he is wealthy while she is barely able to get by.
Money issues definitely complicate ending abusive relationships.
Thankfully having your own home and income is a great start.
You end up with so much spare energy after ending a bad relationship, it is great to have a career to throw it into like OP could.
But it could be hard to walk away from the bits you really enjoy, not matter how bad some aspects are.

@cakedup

It's to do with attending a concert of someone he has been a fan of for 30 years

So you aren't allowed into school as part of your job but he wants to go to a concert & go away to a hotel for 4 days? Surely a concert would be a big Covid risk?

Hopefully you can see how unreasonable he is. He's making up all the rules about what you can & can't do.

@Achillo

Money issues definitely complicate ending abusive relationships

I reckon OP would be better off getting a second job to make up the money. One that isn't as full on as caring for her partner.

I just spoke to a good friend of mine. Started off her explaining that some of his behaviour may be to do with possible brain tumour (previously touted). Then as I told her more, about the hoarding, open phone calls etc she responded similarly to some of these posts. Said she will always be my friend and misses me, so I'm so grateful I haven't lost her. Agrees the demands made of me are unnecessary, insane, controlling, creepy and abusive. We are arranging to meet soon.

I was on the phone to her for about an hour and in this time he was constantly calling and texting. Apparently his daughter was having a panic attack. Started off her needing my paypal details as she is selling tickets on our behalf. I just texted her (dp doesn't know) and asked her if she is OK and does she need my paypal details? She seems to have gone awol now. Dp making out she is under a lot of stress and not having my paypal details was somehow the last straw. I said to dp why is it that whenever you can't get hold of me immediately, a massive drama unfolds?

Your suggestion of ending the break a day early so you both get to do what you want/need is a perfectly reasonable and a very good solution.

He got really ill because you started to push against the boundary he's imposed on you. By appearing ill, you've got back in line. By the time the weekend comes along, you won't mention it again because last time you did, you made him ill.

Except you didn't. Gently suggesting a tweak to plans, doesn't normally make someone ill. He didn't get ill, he got manipulative.

He wouldn't do this. He would hate the thought of being a snitch.

You've had several replies on this specific point but I can't resist adding another.

Your question of were you being unreasonable is the wrong question. Obviously, 100% that is a normal thing to do. What is not normal or reasonable is:

• him saying no.
• more insidiously, the underlying dynamic between you that seems to make you both think he even gets a vote, let alone the actual power to decide.

It should be "sorry love, turns out I have a work commitment on day 4". How the mechanics work out to achieve that might vary but whether that results in you coming home early alone, coming home with him early or even not going on the holiday after all, holiday plans are flexed around your work commitment.

There is something deeply disturbing about him simply refusing to "let you go" and you both thinking this is acceptable.

One of the subtler ways to wield power is to control the agenda. Think of it in work terms - no matter what the power dynamic looks like in a meeting room, the real power lies with whoever set agenda and decided what was "allowed" to be discussed. If you're going to do anything ethically dodgy, you make sure there's no time on the agenda for ethical debate. And if anyone tried to bring it up you'd repeatedly close it down, until people stop remembering it's even a question.

It's so good to see you putting a boundary in place and opening up to real world people other than him. It's fantastic that your friend is still there - i bet she was so happy to hear from you. you will need the people around you to help you keep sight of the horizon. How incredibly brave to message his dd rather than take his word for it as well as well. It might not seem a big deal but this is how you drag yourself out of the pit he's got you mired in.

All of this

In fact all of @Craftyys replies! 👏🏻👏🏻

Good news that you spoke to your friend and that she is still there for you.

It's very telling that he immediately created a massive problem as soon as you went awol.

He always does this and he always will.

He actually terrifies me, OP. I think he could be very dangerous when you break things off with him.

Please don't stop posting.