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.

Well I think it's been said, and especially when referring to me in the 3rd person, in a patronising, dismissive or slightly nasty tone so I agree with your initial post. And yes I've had mh problems in the past (just straightforward depression) and I feel very grateful that I have not experienced mh issues for the last several years. I have the ups and downs of normal human emotions and have flaws but I don't agree with putting a mh stamp on anything that moves slightly the wrong direction. And no one here can know I have a mh condition, this is diagnosed by a health professional. So please don't feel the need to apologise. The other posters are wrong to make these assumptions.

There is a lot here that has made my heart sink because I can see its true.

I hadn't really thought about it before if we were to split up, even though the thought of all that freedom feels like a relief...I think you are right. I think I will feel at a complete loss, like losing a limb. It will feel like I've been thrown to the other extreme - no one will care where I'm going or where I've been, no one will know that I've got a headache or what I've had for dinner. No one will need me as much as he does.

I find this extremely strange - well, it's one of many things you have described that I find strange, to be honest. I'm not a medical professional, but, from what I've read, this does not seem to be a symptom of GCA. So, what condition does he have that requires him to avoid sleeping longer than 20 minutes? And, if this is actually true, how did the doctor (or whoever diagnosed his condition) expect him to be able to do this 24/7 without a permanent carer? If this were so vital for his survival, surely the medical team treating him would have made sure he had a system in place to ensure this was taken care of.

I think he doesn't need a medical team just an alarm set on his phone to go off loudly every 20 minutes.

Yes, you're right @Princessfluffy - it would probably be the easiest way, if indeed it's true - so why did OP think she had to take on this job? When I said medical team, I meant the people who diagnosed him should have told him how to make sure he did not sleep for more than 20 minutes at a time. But they wouldn't have expected his partner - especially one who doesn't live with him - to do that 24/7.

I think the BF just told her to do it.

@cakedup have you ever physically been witness / involved in a discussion about his medical conditions with a medical professional? By that I don't just mean heard your partner on the phone

It will feel like I've been thrown to the other extreme - no one will care where I'm going or where I've been, no one will know that I've got a headache or what I've had for dinner. No one will need me as much as he does

I'm so sorry you're dreading this.
It must be devastating.

But you're an intelligent woman. You can go back to visiting your schools. You can spend your days exactly as you wish. You can mend things with your mum and with all your other friends.

Isolating you from absolutely everyone in your life and social circle is the mark of the man who is controlling your every move.

He has left you with no-one. But you have the ability to reconnect. Also, to join clubs and organisations and meet new friends.

The rest of your life beckons! Embrace it!

OP, I am early 50s and single and likely to remain so and there are indeed moments - especially when I've big chunks of time to myself - where I feel that chasm, that no one knows or cares where I am, how I'm feeling or what I happening in my life. Those times and those feelings, although infrequent, are daunting and big and hard. But they pass and crucially, I try to prevent them from taking on an outsized significance by spreading the risk, by which I mean filling my life with lots of things and lots of people so that I always have some ballast to stop me floating away. I very actively nurture my friendships in particular but also my relationships with my family, my work relationships, my physical well being, my interactions in my community, etc, . I try and live a life that feels as full as possible across lots of dimensions so that even if one bit is not going so well or someone let's me down, it's not the end of the world. I'm not sure that it's ever a good idea to put all ones eggs in the relationship basket but in your case it has been catastrophic to your well being. Others - and yourself - have pointed out the many ways this is the case so I'll not labour the point.

At a minimum, you need to built back up the other parts of your life without apology - do the work that you love and do it well without half an ear out for your partner, apologise to friends and family you have neglected and try to reestablish ties, be there for your son, look after your own health. If you make meaningful efforts in all of these, then him going from your life will seem much less scary and daunting, I promise. And you may gain perspective on how ridiculous this bubble has been. Or maybe he'll see things differently and you differently and you will go on to have a more normal relationship. I personally don't think you should spend another minute with him but extricating yourself or changing the dynamics is a process which you simply HAVE to start.

OP, you have said a few times you are going to start making changes. Let some of us support you. What is the first change/boundary you are going to make?
If stopping the 16hr a day surveillance is too much upfront, you could start with

• doing a school visit for work
• reaching out to a friend and organising a coffee or other catchup
• taking your son out somewhere for a few hours and switching off the phone

You do need to start making changes, and there is no time like the present!

OP, he has isolated you but you will find that when you start to build up your feelings of self worth, and that will include putting more energy into other relationships and your son, you will also begin to see through thie machinations of this man.

I'd be glad to support you (via this thread) through making changes, if you think that would be helpful.

I'm glad you're beginning to think about possibly starting to break free of this man.

This is an excellent suggestion! We walk around the world one step at a time. We eat even the elephant one bite at a time.

OP take yourself out for a date. Make plans with others. Pull out a guidebook and go to some museums. Plan to go on a daytrip to another city. Do not take your phone (get a new one) and do not let the bf be the focus of conversation.

Smoker and girder who can fall asleep, that house is a potential bomb!

OP I live with severe chronic fatigue and I can confirm that it's never anyone else's job to wake me up. As PPs said I have a phone with an alarm, and NHS fatigue management had taught me techniques that I do entirely independently. It is really normal for people who struggle with daytime drowsiness to have absolutes they need to be awake for. Mine tends to be my children rather than "I might die", but it's still an absolute. The idea of trapping someone else with the responsibility for rousing me over a phone line is abhorrent. You can't live like that and no one should make you. Can you see the insanity of someone refusing a panic button or carer and yet being prepared to demand this much from you?

I also think that a lot of mature, well brought up, kind 19 year olds would tell their mum what they knew she wanted (or perhaps even needed?) to hear.

This makes no sense. His GP has apparently told him to never sleep? By definition, a certain state of drowsiness is reached before actually going to sleep, normally.

I think this is faked.

Could you tell him this is becoming untenable? The responsibility must feel immense, which I suspect is the point. Tell him. That you can’t spend your day shouting his name down the phone? That if he is seeming “dangerously drowsy” that you’ll call an ambulance from now on.

And go to his next GP appt and ask, “Why is it dangerous if he sleeps for longer than 20 min if he becomes drowsy?”

He apparently shouldn't sleep longer than 20 mins when in a certain state of drowsiness

I don’t know how you could believe this is true for even 5 minutes.

Whereas with my work, he sees schools as the worst breeding grounds for covid etc

I work in a secondary school & was seeing still loads of kids each day throughout covid. I caught it twice & neither time was from being in school. I think you should get back to work!

I was also immune surpressed for part of the time & just had to get on with things.

There has been some excellent advice on here @cakedup I do hope you can make use of some of it, baby steps are fine as long as they are in the right direction.
& for what it’s worth his requirements really don’t add up for a diagnosis of GCA, having helped people with managing this condition being woken every 20mins by someone as an ongoing management plan is unsustainable & if being charitable I’d say he is misinterpreting the guidance or more likely cherry picking what he feels will keep you at his beck & call. If you can put some boundaries in place & find yourself again.

I hate to be cold, but you don't have to nurse an ungrateful man who has so many distasteful qualities, no matter what his illness is. Especially since it is costing you other friendships and closeness with family. He sounds difficult, bad-tempered, and mean spirited.

I'm here too @cakedup

We may be strangers, but you don't need to do this alone.

Be open and specific with friends and family that you need help. The support you need and that you are trying to get your life back. They’ll be relieved.

I’m glad to see you saying apparently advised by the GP…..
If any of this was true, the GP and other services would have been far more involved in trying to get him further support. Even a nurse to pop in daily.
I don’t believe it for a minute.
It’s more control over you, and more guilt tripping. I will die if you aren’t at the end of the phone to keep me awake…
Please start to loosen the chains this man has wrapped around you. He needs to take responsibility for his own health. He drinks and he smokes despite having dangerously high blood pressure. And no GP would ever accept that he needs to drink and smoke to keep him calm. Another lie…

Please reach out to your family and friends and tell them exactly what’s going on. Arrange to meet for a cuppa… start putting your own needs first. Yes he will have a massive crisis, you know that, as soon as you start to withdraw. But stay firm.

Would you consider therapy? Sounds like you have low boundaries and self esteem. It is a tough situation but you’re not responsible for him. Does not mean you can’t be kind, he is your child’s dad. This is teaching your child something big and you need to make sure that he is learning how to honour self, own needs and boundaries, respect women. Therapy could really help you see this situation more clearly and understand how you have allowed it get like this.

He is on a waiting list to be admitted for a weeks stay at a neurological centre

Perhaps you could touch on this when you do go to the GP with him, and see if you can get a feel of when this admittance is likely to be. (if at all).

It will be the perfect time to make changes. You will have had 'a week off' and then use that as an excuse for how drained you see you are having to constantly monitor him.

I mean of course if his GP is that concerned about him, he could be pushing for this as urgent, right?