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 abusing you!

Ask yourself if you would be happy for your family or a close friend to be in this situation.
what advice would you give them?

What’s the condition?

@cakedup I admit, I’ve got a weird situation myself, I try not to write much on Mumsnet these days, but even I find this weird. However, I’m hoping that I can maybe give some advice, OP.

First of all, it sounds like your DP is in perhaps the same boat I am? I have been told I’m dying, given a rough estimate of how long I have left, but of course, due to the nature of the disease (causes brain bleeding now), I guess I could go any day. But I don’t think or act like that constantly. And it DEFINITELY doesn’t mean my GP calls me every day. I talk to him maybe once a week when things are really bad (and this is because he’s a private GP and we have an agreement that he is the only one who handles my pain management, and he’s agreed to be there at the end if I choose assisted dying). Or that I stay awake because sleeping too long might affect something. Would it be better if I took my pills every four hours around the entire clock? Maybe, but even my doctors know that’s not sustainable.

That’s part of dying - you’re going to go when you’re going to go, and you cannot force things to the point of insanity to try to stay alive (making someone stay on the phone with you 8am to midnight; making someone wake you up every X amount of time, etc).

Second, I too have a non-traditional caretaker relationship. I live with my ex husband and he’s my primary caretaker. As such, I’m well aware that there are things I can ask of him, and things I can’t ask of him in the way that I would if my caretaker was a paid professional. I try to respect that he now has a separate life from me, and that life is going to continue once I’m gone (our marriage ended because I’d been chronically ill for so long).

Your DP is not taking actions that make this easier for anyone. He is asking you to take on tasks that are beyond what any unpaid carer can do, and whether it’s malicious or not, him asking you to socially isolate will make his death much harder when it comes. In addition, if he’s this sick, he shouldn’t be living in a filthy house and he shouldn’t be asking you to stay in one either. I understand hoarding is a mental illness, but on the one hand, we have a man who is so afraid of dying that you two are sacrificing all your free time to keep him alive, and on the other hand, he’s sabotaging that by doing some of the most unhealthy things possible.

You need to talk to him in a calm manner about setting up some resources (this is how I would put it, if you’re concerned about his condition being affected by stress) so that you can ensure he has the care he needs. Maybe this is a panic button he wears, a fall alarm for seizures, a carer covered by the NHS for some hours, etc.

But what you are doing is not sustainable. You can love someone tremendously, but you still can’t set yourself on fire to keep them warm. When you burn out, they’ll be completely alone and cold again. Please look at getting him more help and setting some boundaries from that point of view. I would hope that he would rather have you in a mentally and emotionally healthy caring relationship rather than not have you at all.

Very best of luck, OP.

The GP calls him every day? Where on earth does he live?

Your job isn't worth it? Really. Honestly op, you need to wake up. Funny he can do stuff he wants.

What illness is it?

the reason for maybe harsh seeming replies is that people are aghast that you are doing this to yourself. The lack of privacy alone is a kind of torture and not sustainable, even if he was supportive of your work. You have no escape in work , no interaction with friends and family, no say over how you spend your time. Did he ask you to give up everything and look after him and do you feel guilty that you didn’t want to? Don’t. This is not down to you. As PP have said there other solutions, there is technology like alarms, there may be health professionals or charities who could help depending on the condition. You love him but he cannot basically own, use and dictate your life as he sees fit. You are not unreasonable to say you can’t cope with this. It is harming you.

He chain smokes in the room I am in……

This would be enough for me to walk away, go ahead and smoke yourself but to inflict second hand smoke on to anyone, never mind someone you love is down right disrespectful and disgusting.

Domineering, critical of your friends, your family and your work and lives in a filthy house filled with rubbish where he chain smokes. He has nothing positive to offer you but has managed to enmesh you in his twisted world. It will be tough to untangle yourself as you sound like a very caring person and he is exploiting this to keep you under his control.

Apologies if this has been made clear and I've missed it, I've only read OP's responses - But are you in a relationship and just living separately, or are you in process of separating when everything re; illness has happened?

Im sorry this is not a relationship, this is martyrdom

Was somebody unwell when you were young op?

He sounds utterly vile. Stop pandering to him.

Apart from everything else, the fact that he urges you to stay on until midnight (even 10 p.m. is bad enough) when you are a lone woman having to drive and get yourself safely home during hours of darkness is grossly unfair. He appears to care about himself but doesn't seem to have consideration of your safety.

Having been in a similar situation to you, where I was taking on more and more responsibility and mental load - and the partner wouldn’t sort out the most basic of his pressing personal stuff - I just had to detach. For the sake of my own health I emotionally detached from both the person and situation, I can’t make him sort out his essential life and health admin, and I can’t worry about it myself any longer. I had to withdraw myself from partner status and just remain as a friend - the burden had become onerous.

It wasn’t until I wrote everything down, listed all the circumstances - that the answer became obvious.

Don't mean to be so blunt.. but are you with him for his money... ?? I don't mean to offended you by asking you that.. I just wondered when you mentioned he has money... money would be the last thing on my mind !! Hope you sort something out soon for you both. Xx

A person can be ill AND an abusive arsehole.

You can be a loving kind person AND have some healthy boundaries.

He could set regular alarms on his phone. He could have a carer check on him regularly. That he chooses not to is not your responsibility to fill in the gaps.

Bluntly, he needs you more than you need him. Stop putting up with shit like sitting in his smoke filled cesspit home for hours longer than YOU want to. Stop tolerating him listening in and slagging off your colleagues. MAKE an hour a day when you are not on the phone to him, to ring a friend or family member. If he has an emergency in that hour, all the more reason for him to get in professional care help or equipment like an alarm pendant, NOT all the more reason to double down on abuse of you.

This has given me the absolute creeps. It’s like one of the psychological thrillers I can’t read anymore. Get. Out. Now. He’s ruining your life and your son must be in despair at the whole horror.

Wait what? You aren’t in schools and on the phone to him all day are you? If so, wtf?

You should drop him like a hot potato OP, but you won’t, you’ll carry on in this miserable approximation of a life with this total arsehole

I’m sorry caked up but this is bullshit.

The cinema will have just as many germs as a school, more so in fact as schools are generally cleaner. Sitting in the front makes no difference. In fact could be worse as all the coughs and colds are coming forwards and cinemas do not sanitise every seat after it is used.

There is no way a GP is calling him every day, they just don’t. They don’t have the time.

He is playing you I’m afraid.

I get that you love him, but he’s using and brainwashing you.

if he genuinely can’t cope he needs full time carers, which it doesn’t sound like he would be applicable for because he can do things when he wants to.

The fact his house is filthy would be enough for me. I wouldn't want to set foot in it.

The fact he's a hoarder would be enough for me. I can't bear to be in a hoarder's house, it's like looking at the inside of their mind and seeing how dysfunctional it is.

The fact he drinks and smokes when he is so ill would be enough for me as well. He's not doing anything to help himself is he?

Anyone who expected me to keep an open phone line all the hours in the day which meant that I couldn't do anything without him hearing it and I couldn't go out with friends as a result would be enough for me.

So what I'm saying of course is that I would back away from this relationship. If you feel you can't do that then I would start with turning your bloody phone off. I wouldn't have him listening into my conversations and being critical of my work when he knows nothing about it.

I wouldn't go to stay in a filthy house. I wouldn't go to stay with the hoarder. If I wanted to see him so badly then he would have to come to my house.

You are in the absolute prime of your life. Your child has grown up and you should be having a free and happy life. Don't put up with this controlling behaviour from this man.

He's super abusive op. He's got you running yourself ragged and even when you're not with him, he's managed to make it so he's got constant unfettered oversight of what's going on in your home. He's separated you from your family and support network and now he's making work difficult for you, probably in the hope you'll just give up work and be even more in his thrall.

When you're at work, and spyphone is active, does anyone else you may be meeting with, know that someone else is listening in? Do you ever discuss confidential information or data with people while he's sat there listening to something he's got no business hearing? If so you could get into huge trouble.

Stop the spyphone line immediately, as of right now.

Stop being responsible for him. If he needs that much help, he needs carers. You're not good carer. Honestly it doesn't sound like he loves you, respects you or even likes you that much. Those good fun times - that's him throwing you a bone to keep you around.

Ah stop. He doesnt think you working is worth it cos of 'virusws' but he lives in filth?
Would you listen to yourself.
Hes a selfish prick who is using you.
Get rid.

What do other people with his illness do to keep themselves safe OP?
I'm sure you can see that other people find other ways to cope - very few people have someone to do all the things you're doing?

Whatever those options are, he needs to look into them. I would insist on this because you need some breathing space in a day. You can't work, run a house, maintain your MH, look after him and support your DS. It's too much for 1 person.

It's widely acknowledged that carers need their own support network - you need to establish yours, carve out time for yourself. Look after yourself.

As for him, he's had an awful diagnosis. Has he had any counselling to help him come to terms with this? If not, would he?
It's not fair for him to take his feelings about his life out on you, especially as he seems to be counting on your guilt to keep you around.
As you can see from this thread, that wouldn't be a given for a lot of people. He may be struggling but you're doing a lot to support him already. You can't also be his emotional punchbag.

Another thing to consider, as morbid as it is, is how your life will function when he's gone. Are you going to be too far out of touch with the face to face part of your job that you like that you can't return to it?
Are you going to lose your friends and family completely so they won't be there when you need them?

This is a relationship I think a lot of people would be questioning but if you're not prepared to leave, you need to be strong enough to make it work for you.

Good luck OP.

A GP would not call each day.

Seizalarm work off a smart watch and would alert you by phoning several numbers if he was having a seizure. Also you can have video streams to your phone. Both these would give you both reassurance and also you could call for help/an ambulance.

The epilepsy society would be able to advise on other measures.

I don’t know if these posts are genuine but have knowledge of people not knowing if they will be alive the next day or not due to neurological conditions. He needs mental health support but the hoarding will be a comfort. And the drinking and smoking coping mechanisms.

Are you with him because he has money ?? I don't mean to be so blunt... but money would be the last thing on my mind.. !! Hope you manage to sort something out for you both xX 😘

I had way more freedom than this when husband was terminally ill with cancer. Hell, I even had more freedom when he was in his last weeks and I was nursing him at home until he died.

I continued to work as a teacher for much of the time (the only extra was that I was allowed to have my phone in my desk drawer instead of a locker, in case of emergencies). I went out with my friends. Our kids went to work and uni.
In the last weeks I could go to do the grocery shopping as he had a pendant alarm that would fetch a neighbour or paramedics.

And all that time he was nothing but appreciative, and not remotely demanding.