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.

Honestly I can not think nor have I ever heard of a situation where a GP would need to call a man every day to discuss symptoms.

Do you know the name of this condition? Have you googled it? Is it worth putting it on here so people can advise?

Have you been with him to GP or hospital ? Has anyone other than him spoke to you directly about his condition?

And when your DP is on the phone, but drowsy, you rush in to rescue him?

OP - this is one of the most fucked up things I have ever read on MN

@cakedup

No contact with friends/family is not down to immunity, it's because I have no space or time in any given day for them. I'm either with him or on the phone to him.

This is just bonkers & he is controlling you. You need to focus on DS. I think it's unsustainable to have someone on call like that every waking hour.

You haven’t seen or spoken to friends in over a year because he takes up all your time? Crazy. It’s your poor son I feel most sorry for.

I admit that gp calling every day does seem excessive, I'm not sure what to say about that. I have overheard some of the phonecalls, other times he'll just tell me about them or ignore the phone ringing (he has 2 phones) and say its the gp but doesn't feel well enough to take it.

I think he's exaggerating. The NHS is unable to cope. I find it hard to believe that he has a phone call from his GP daily. He needs one of those things round his neck he can press if he feels unwell.

Just reading further back & it seems he smokes & drinks heavily at a weekend. So he can't be overly concerned about his health.

He's dominating your home life & poor DS has to actually ask to speak to you as you're so pre occupied with this full-time on-call nonsense.

"He would rather die than have a panic button or carer etc. He wouldn't even use a pill box I got him." @cakedup

Wow. Perhap you'd better leave him to it then. Since he doesn't actually want what he actually needs. He needs carers and people giving him practical help -and a cleaner - who aren't emotionally involved.

What you are doing is just madness for you. He sounds like his illness has badly affected his mental functioning. I bet he won't have counselling either though...?

Can't he set alarms on his phone to wake him up? Eg. Every 2 hours during the day. Are you sure he has 10 years to live? Has he told you this or the doctor directly? I would be suspicious.

@cakedup OP, I’m not sure what to say about the GP thing.

My issue is also that I’m at high risk of brain bleeds and have already had a few “microbleeds” due to a vascular condition plus an autoimmune condition; it may also be that me catching two rounds of COVID had an effect since they didn’t happen until after COVID.

But like I said, I talk to my GP maybe once a week, and that’s only because he writes prescriptions that I need routinely and also handles infections, which I’m prone to. But he still doesn’t randomly call me to check in once a week. I have to call him when needed, leave a message, and he calls me back - maybe quickly, maybe not until the end of the day. If it’s just about a medication refill, I may have to call again the next day because he’s extremely busy. And sometimes we just have a good period, where we don’t speak for three weeks (like now, we just happened to speak two and a half weeks ago - there’s no schedule).

For my doctor, there’s no way, even as a private GP, he’s be able to call me every day. Nor would he need a diary of my health. If you’re prone to brain bleeds, only two things can happen: 1. You’re warned of the symptoms and when to go to the hospital, and/or 2. You just get a scan every X (three or six) months to see how it’s progressing (if, like my case, your doctors are unsure exactly how fast you’ll go). Maybe if you were a millionaire or billionaire and had a private physician (not joking), I could understand sharing daily diaries. (NOTE: this is different than just being asked to keep a diary and then share anything particular at a monthly or bimonthly appointment).

But I mean… I can’t drink, I can’t smoke, I have to have weekly pillbox things made up by my pharmacy.

I’m absolutely not saying that your DP is a liar. I’m just wondering if either he’s confused about what’s happening or he’s refusing to deal with it, mentally, or emotionally. I do hope maybe you can figure things out, because it sounds like, regardless, he’s handling his life in a very self-destructive manner, and you don’t have to fill in the gaps when he does that, if he’s doing it by choice (the drinking, the smoking, the lack of adherence to taking his medications, the filthy house, etc.).

@cakedup But I think your first stop, if your DP wants this much help from you, must be going to the GP with him and getting things clarified so you understand what is and isn’t necessary and so you can ask the GP questions. If your DP won’t allow that, then I think you’d need to have a hard discussion with him.

Please get help for yourself!
please go see a counselor .
is he too ill to clean? So I’ll an nhs gp calls every day?! But isn’t suggesting sending a carer or some sort of occupational therapist?
why isn’t he paying for a cleaner?
pps are right, you have got yourself into a wierd little bubble so you can no longer see what is normal or healthy.
my cousin looked after her ill mum with the aid of two or more carers, a cleaner, a very helpful partner.
And she still found it mentally and physically exhausting, it took her a long few years to recover. you are trying to be superwoman .
and I’m sorry to say it, but as
pps have mentioned it seems like there are a lot of holes in his story. Something idis not adding up.
this sounds like a Hollywood film. Like ‘misery’ please get a counselor, and get some normal life. Even full time careers get nights off, and need to put their own oxygen mask in first.

Also look up dr Ramani on you tube
and this might be useful https://whatiscodependency.com/control-power-and-codependency/

The gp calls daily, but if your patient doesn’t answer because he can’t be bothered the gp doesn’t bat an eyelid?
your patient ( because he doesn’t sound like a partner) talks on the phone to the gp and occasionally lets you hear it on speaker phone? Almost as if he’s reassuring you that there is a gp on the end. That time.
as 5years says, you absolutely need to talk to the gp. You are his main career, you need to know what to do for the best, so you don’t get it wrong .
also, just get help to start seeing friends once a week.

Take away the illness.

Do you want to be with this man, as is, just minus the illness? Grotty home, controlling behaviour, domineering, derogatory about your work colleagues, family, friends and work?

It's not sounding particularly appealing to me.

It sounds as if he is relying on you when he should be putting in place things to help him cope independently.

I also do not buy the GP calling him daily, i can buy him bugging them incessantly...yes, but not the other way around, sorry.

I do have a life limiting condition, I could drop dead at any second (and have been told that is most likely what will happen) I was given 10 years left approx 12 years ago and my health has not improved, it has got worse... so I live with that fear daily. My GP barely talks to me one month to the next, ditto consultants (I see six monthly)!

It is NOT acceptable to dump that on someone else and make the demands he is making, with no effort to help himself.

I suspect it’s not so much that it’s not so much that you would be lonely as that you wouldn’t know what to do with your time since he is the only thing you devote your time to.

you wouldn’t want to spend time to yourself because you no longer know how.

The daily GP calls are the weirdest, especially as they don’t seem to result in any action. OP - after your DP has had a supposed GP call, does anything change? Presumably your partner’s symptoms vary, so if he’s having a bad day, what happens after the GP call? Hospital admissions, imaging, blood tests, a physical review?

His GP will have other unwell, chronic patients. Some will be close to death right now. Does he/she call them all every day, do you think?

i think you’re being scammed, OP. I don’t think your DP is lying about being unwell but - as a PP said - you’ve enmeshed yourself in a strange bubble with him. The phone stuff is frankly disturbing. He has one known mental health issue (hoarding) but he’s dragging you into some very strange behaviour here.

Yeah, that bit of the story makes no sense. Every GP will have a number of patients with life limiting/terminal illnesses. They don't phone them every day for an update or keep a diary!!

This is one of the most bizarre thing I've read in a long time. Keeping phone lines open?!!! You mean-so he knows who I'm talking to and what I'm up to. No privacy means- so he knows who I'm talking to and what I'm up to!

Gp phoning daily?!!! Wtf!! I've never even known GP's to phone daily when someone has a terminal diagnosis or are at end of life. Are you even sure he's actually speaking to the GP? I don't believe that for one minute. Daily diary to send to the GP I've never known a GP, psychiatrist or consultant to ask for this unless it's to bring to a review meeting where it's discussed, def not to send daily- and I've come into contact with a hell of a lot due due to the nature of my career.

Seriously OP wake up and smell the coffee! This guy is taking you for a mug and you're falling for it. He doesn't let you go home until midnight when you have work the next day, he chain smokes around you, he's threatening you, he hates your family and friends, you keep an open phone line to him for SIXTEEN HOURS a day, your write daily diaries for him when he can dictate to his phone, he has two phone lines, seriously OP wake up- this is controlling behaviour!! I am so angry for you!

Write down support groups for him and his illness, social services number (i find hard to believe he has no key worker if hes that ill)...befriending services. Then finish the relationship.

It's okay to leave him even though he's sick, you know. This is about so much more than that.

OP, youre not that naive. You know what you need to do. I think youre wanting people to tell you to leave so you dont feel as bad. Its your choice. You have had good advice.

It made me so sad to hear that you don't literally put him on hold when you're talking to your son. I had thought that at least you did that and that was a minimum boundary you were maintaining. At the very very least out of respect and consideration for your son, you should do this, especially as your son is struggling. Aside from that, this is no way to live. Best wishes to you in finding better balance in your life.

I think this has become abusive and manipulative.

He really doesn't seem to care that you have your own life and you have a son.

And no, anyone who expects you to be available 24/7 for him is not a nice or caring man.

What would happen if you just stopped putting up with this? What would happen if you insisted he get a proper carer?

i suspect if you were the one ill you wouldn’t expect an open phone line and go off at him if he didn’t get back to you for 12 minutes because he was on a work call. I think you need to set some boundaries and enforce them. Can he get one of those buzzers you wear and press the button instead of the open phone line? Or Google home and say Google call x?

I am wondering if he is faking some of the drowsiness type episodes that mean you need to be on the phone to him! As well as all these gp calls, that sounds so unlikely, it is actually far more probable likely he is psychotic and making most of this up to control you!! Lots of people are mentally unstable or extremely controlling, but nobody gets a daily gp call. You need to get a whole lot more pragmatic and brisk. ‘I can’t stay on the phone all evening anymore, it’s not practical. If yoy need that level of care then you need a carer.’
him: I WONT have a carer. You: well that’s up to you but that is the only way to provide you with that level of care. People married for 50 years get carers because it’s not reasonable to ask their spouse to do so much. I have to go now, speak tomorrow.

you need to stop filling the gaps.

Sounds to me like this grown up adult man takes no responsibility for himself whatsoever. In fact he is actively damaging his health by smoking etc because he doesn’t want to make any sacrifices.

Meanwhile you are sacrificing your own privacy, freedom and happiness to compensate for this and make sure he is okay, because he doesn’t want to look after himself.

Would he ever actively choose to disadvantage himself, for your sake? Would he ever do something he really doesn’t want to do, to make you happy?
I suspect not, because he won’t even let you go home at a decent time.

What happens if you DO leave at 11, or otherwise put your needs and wants above his for a change? Does he get cross or sulk?