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.

Why can't he use screen reader software?

Why doesn’t he use the Internet?

millions of people with visual impairment and even blindness use it with appropriate software.

At least you recognise that it’s doesn’t, and not can’t

Also @cakedup what will he do if you drop dead tomorrow or you needed a hospital stay?

By setting up proper healthy boundaries you won’t only be helpful you. You’ll actually be protecting him if anything happened to you (if he’s remotely genuine - if he’s not he’ll obviously be absolutely fine)

Because then he has one less way to control the OP.

I was a PA/Carer for a man with a severe vision impairment and other disabilities.

He was able to use a computer with some adjustments.

He never once played on his many disabilities. He was alone for fourteen hours of each day.

He had a Careline pendant.

@cakedup please read this excellent post properly.

How can you expect an 18/19 year old to have insight into his condition, ie of being neglected, when you as a 52 year old woman are struggling to acknowledge that you're in an abusive relationship?

OP you said earlier that if he was making it up, it would be “appalling”. You need to let some these 18 pages sink in and start to open your eyes to this realization.

Please read this, he is an abusive personality type, The Jailer, and this is what you’re experiencing. It’s from the Women’s Aid Freedom Programme.

The “open phone line” is just his invention! As PP have says, you’re not a medical professional, so not qualified to intervene anyway!

You are being surveilled and controlled, you are being monitored and your freedom curtailed. Your health is being endangered (smoke), you are being prevented from sleeping (leaving at midnight, long drive). You are putting your job in jeopardy, you are being cut off from friends and family.

http://greatbetleyfarmhouse.co.uk/the-jailer/

I’m really hoping something from someone will sink in. And we’ll all be here to support you xxx 💐

This thread is tragic. An abusive man, with a likely invented illness.

OP, please seek professional help, and soon.

With appropriate therapy, GCA is an eminently treatable, controllable, and often curable disease.

Taken from the John's Hopkins website.

It can cause strokes. So your bloke should not be drinking and smoking.

Absolutely nowhere does it say that a daily call from a GP is essential to preserve life or to assess symptoms.

Nowhere can I find any evidence that these patients are immunocompromised, unless they're on long term steroids.

Did your bloke have all the Covid vaccines?

He's definitely abusive but I'm honestly finding it hard to tell if OP has some un-diagnosed MH issues going on too.

Plus he feels the need to get out, even if its uncomfortable otherwise feels insane being indoors for too long

Fancy risking his life like this!

He's probably put a tracker on your car, OP.

https://counsellingresource.com/therapy/self-help/stockholm/

Worth a read OP.

Op. Can you imagine living like this for the next ten years?

In the next ten years, say your ds meets someone, gets married has a baby,

Are you not going to his wedding? Because of DP? Are you not going to visit the baby? Because of DP? This is what you are doing with your family currently. And I'm surprised they aren't more pissed off with you!

There are services and facilities available so you don't have to live like this, the sooner you pull back a bit I'm willing to bet DP will start doing these things on his own,

I say this in the nicest possible way. The 18 hour phone call is BONKERS.

And I can say this from experience. I was involved with a man about 6 years ago, we spoke on the phone about 16-18 hours a day, longer at weekends, he wasn't ill, it was just a long distance relationship.

I stopped calling friends I planned my whole life around these calls. And looking back, what an idiot, he knew everything I did all day every day.

I ended it, it was heartbreaking and my days were empty for a while afterwards, but I eventually moved on and I look back now and curse myself.

If you don't want to leave him, boundaries need to be set NOW. The phone calls stop, he doesn't ruin your career, his children need to know asap. I'd be devastated to find out my parent was that ill and wasn't told about it!

He is using his illness to abuse you. My ex husband did this, he smoked heavily, was an alcoholic. The day I tried to leave. He faked a heart attack normally I'd fawn all over him and back down, this day I didn't, I called him an ambulance who pretty much told me it's either anxiety or he's faking it, I never looked back!

You say the smoking and drinking helps keep his stress levels low? And i mean no disrespect by this, but what does he have to stress about YOU do EVERYTHING for him!

Please take some of your life back. Before he's gone and you've lost everyone and everything, cos that's the way it's heading,

What happens if your boss finds out about these calls and you get sacked? No job, no house, that WILL affect your son.

Um.... @cakedup ??

The outlook (prognosis) for temporal arteritis (giant cell arteritis) is very good. With early diagnosis and treatment, symptoms generally start to improve within days. With continued medical care and treatment, many people with the condition recover fully within one to two years. Most people have a typical life expectancy with early treatment.
https://my.clevelandclinic.org/health/diseases/temporal-arteritis-giant-cell-arteritis

Hang on, I looked up that condition. It talks about methotrexate as an immunosuppressant.

That is what children like mine with Crohn's disease are put on. It's not very heavy duty, and little kids with IBD are in nurseries, schools, secondary schools, universities whilst on this drug. Adults with IBD are at work on this drug.

My child has been on a very similar immune suppressant for 4 years. She will be on it for the rest of her life if it continues to suit her. She doesn't hide away at home nor control others around her.

I looked back at your thread from 2021 where you were sitting beside him to work on your computer because of the great fear he could have a stroke at any moment. Well, 3 years later and despite drinking excessively and smoking a great deal, he hasn't had that stroke.

I assume the meds reduce his risks of instant death significantly.

Look, OP, if my then 11 year old can attend secondary school during a pandemic whilst on an almost identical immune suppressant as the most typical one used in your partner's condition, I think you could probably risk going back in to schools yourself.

This thread is one of the saddest I have ever read.

Temporal arteritis is not terminal.

It doesn't require patients to have a daily phone call from anyone medical.

It doesn't need the patient to keep a daily diary.

It doesn't mean that the patient has to avoid getting infections.

It does increase the risk for strokes though, so patients are advised not to smoke or drink.

@BigBreaths that drug is also used for lupus and rheumatoid psoriasis. I expect it's the main drug for all auto immune conditions and most people suffering from them go to work, college, fly in aeroplanes, travel on the tube, go to concerts, etc.

She's being conned.

OP has been posting about this awful man for many years now.

Nothing has changed, except his controlling behaviour has got a lot worse, and she's still afraid of him.

This thread is so depressing.

This man is manipulating you and you’re running around after him yet he won’t do the most basic things to keep his health. Heavy drinking and smoking with blood pressure problems?? Utterly ridiculous.

You are being abused but since you aren’t willing to listen or accept the reality nothing will change and no one can help you.

People with terminal diagnoses don’t even hear from the doctor daily.

what kind of number has been done on a person that they believe this tripe?

Have you never Google the condition yourself OP?

I have teen DC too, also one with rather complex MH issues, so much so they have been hospitalized for it. When you chatted to your ds, did you mute the open call?

Also just with having a history of living with a child with issues, they very rarely come out and talk about something that is affecting them in a whim like this.

You have put your ds in a spot and he has replied with what he wants you to hear. Please, read that again. He isn't going to be the one to upset the apple cart. They will rather live a life that is chaotic, but they know what to expect, over admitting to something that may cause change and upset in their life.

If you don't think twice about how you are being used, think about it for your ds. He is also affected by this. I think more than you realise.

He does “always want to put you out”— you are completely misinterpreting his actions to cast them as generosity to you so you can continue to serve him while imagining your needs are being met. Nothing could be further from the truth: whenever you propose a solution to a problem that he has (the pill box, shopping, etc…) he negates it so he can keep his level of crisis high and keep you dancing to his tune. The overuse of the phone, for example, makes you think that he is generously and bravely not requiring you to physically drive to take care of him. In reality its just s long electric leash that keeps you tied to his service even when you are not physically present.

You are gaslighting yourself by refusing to recognize the absurd selfishness and extreme manipulation that this man displays. You have slowly been manipulated into being the submissive handmaiden to a a very crafty, mentally ill person who has a severe personality disorder characterized by high anxiety, high need to control, and a machiavellian/manipulative streak that enables him to manage you.

Your DP ‘s pathology meshes with your own. You are flattered and seduced by his apparent dependence on you (he will die if I don’t take care of him! Only I will care for him appropriately! He needs me!). His needs have pushed out everyone else’s and even caused you to willingly violate your ethics at work. His overpowering and absurd demands for connection are both flattering (how important am I that he must keep the phone open to me 8-midnight!) and also are destroying your ability to live and entertain yourself on your own. In that way your experience has become like a teenager addicted to an online roleplaying game. You have lost all proper sense of time and in search of emotional rewards (he is safe! I saved him! He praised me! He agreed to let me do X or Y! His children abandon him but I stand by him! Even his doctor is not as faithful as me! ) you have given up your own life to be a mete adjunct to his.

You are addicted to his game and his game is permanent drama and crisis. It can’t be solved or resolved not because he is sick and may die—a condition which we must all confront—but because the way he manages this human condition is to absorb and abuse you. You have no more real value or reality to him than the other things in his hoard do, or s backscratcher. Don’t kid yourself. If you vanished tomorrow he would find another person to use to self soothe. Because at base he is selfish and self centered. You can try to pretend otherwise but none of the things you have described him “doing “ for you were completed well or didn’t further obligate you to him (increase phone calls while he sorts something)

Yes, that’s the feeling I get too.

I think this must be one of the most fucked up relationships I’ve read about on MN. Both parties in a sense are feeding off each other.

I once had a friend like this. She habitually got together with hopeless, lost men who she rescued. She would then tell me all about the shitty things they had done, and how badly treated she was and I would get angry on her behalf.

But in the end, it was almost as if me expressing anger on her behalf fed her in some way. It meant she didn’t have to feel or express those uncomfortable, ugly emotions herself. And in any case, following these conversations we had, she would promptly go back to these men and the whole gruelling cycle would begin again. She actually had no intention whatsoever of ending these relationships because they served her in some way, served some kind of warped need or obligation in her. She was terrified of being a single woman too, since due to the effects of growing up with a toxic mother she had a ton of internalised misogyny.

Dear God. What a nightmare.

Well this took a turn