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.

I'm a GP and struggling to imagine what disease this might be? MS? MND?
None of these should cause this kind of behaviour though.
And we don't ring anyone everyday not even those actively dying. Though we have plenty who would like us to or who ring us every day (we have a call back system).
Sounds like whatever it is, he has used it to make his control of you absolute.
Please so some reading on codependancy (I'm a "saviour" too and it took a long time for me to recognise and escape my codependant abusive marriage)

Think the OP said upthread what the illness is.

Apologies I thought I'd read all the OPs posys

When you go and see the GP I think it would be useful to compile a list of questions. Maybe ask your partner to get a double appointment. Such as does your partner still need waking up every 20 minutes. Anything you’re not sure about it. People on this thread, I imagine would be willing to help you with this.

So he had TA that caused some damage, high BP/TIA and back and prostate problems? How is this terminal. Sounds to me like someone told him his 10 year risk of dying and iit was high? Lots of people have high 10 yr risks thats why we manage them aggressively.
Iits not a terminal diagnosis.
The daily diary sounds again like something he has extrapolated and exaggerated.
The daily calls I just don't get.
Is he neurodivergant OP? Apologies if you've said already

You had friends before, I'm quite sure you will again. Your son will continue to care.

I would be grateful that no-one will need you this much, because his "need" is way over the top and has much more to do with his controlling personality than any genuine illness or need.

@BurnoutGP it is GCA giant cell arteritis apparently?

I'd suggest OP that if you do go to a GP appointment with him, as well as asking the very valid questions around why he apparently needs constant monitoring, you explain what you are actually doing at his behest to "keep him safe". I can't imagine any doctor alive would think it viable or sustainable.

It's very interesting to get a GP's perspective - thanks. I don't think she mentioned that he is neurodivergent but I might have missed something. I think he might have OCD though. What do you think about the not being allowed to sleep for more than 20 minutes at a time? Would this be necessary given the conditions he is supposed to have? Thanks!

I have a feeling that all this talk of the GP wanting to see you, and him wanting you to go along, is all going to change rapidly when he realises you are serious about going with him.

Perhaps this will be a good start. See what his response to really coming along to the next appointment.

Just about the nurse thing...the gp has tried to arrange nurse visits as well as offering a place at a facility (I can't remember what it's called, not quite a hospital but essentially where he can be looked after, fed and make sure all meds taken regularly). Gp has offered house visits when he hasn't been well enough to attend appointments. He has refused all of these. Hates hospitals or being treated like an 'invalid'. Won't have an ambulance come to his door for neighbours to see.

It's one thing I am definitely going to stop.

That is so good to hear. It will be very interesting to see how he reacts to that. Be prepared for some kind of episode or him attempting to put another demand on you. If you know it might be on the cards you'll be able to see it for what it is and you won't feel panic when it happens. Knowledge is power.

Please be careful what you share with him. If he is as so many of us suspect, he will use whatever you say in some way to get what he wants. Again, knowledge is power, don't give him any.

I agree with PPs, it'll be interesting to see if you are allowed to accompany him to any appointments and if you'll be allowed to speak.

The most important thing is that you are not responsible for this man's welfare. If he becomes more unwell or dies, that it not your responsibility. He has medical people working with what he tells them and any test results that have been undertaken. If he was truly worried about his health he'd be concentrating on giving up smoking and drinking, not what you are doing with every minute of your day ...

Having your eyes opened to what his behaviours really are will help you in the long run @cakedup . Your strength to concentrate on yourself will be building as your care for a man who is using and controlling your every move is lessening.

Keep posting, we've got you

His needs don't trump your needs OP.
What are your needs? Attend to these first.

I agree that it sounds like outside agencies need play their part if his care needs are as described. Start with the joint GP visit for sure. It may provide the rationale for how to step down a bit without feeling like his life is in your hands.

I'd also consider some counselling for yourself, you can self refer on the NHS or there will be low cost options available via charities. This will be very supportive in helping you decide how much support you are willing to give and to manage a step down in support if that is what you want to do.

Gp has offered house visits when he hasn't been well enough to attend appointments. He has refused all of these

Do you know this for sure, or is this what he had told you happened?

I didn't even think GP's did house calls anymore.

Hates hospitals or being treated like an 'invalid'

But it is okay for you to treat him as one? Just no-one else....

is he trying to hide the extent of his hoarding, do you think?

I am deeply touched by complete strangers willing to support me like this. It feels a bit indulgent given that it's my fault for being in this situation.

• I had a couple of jobs coming up that I really wanted and agreed to do but was going to cancel because he doesn't approve. I will not cancel them now.

• there are a couple of friends in particular who have tried contacting me but have now given up. I will contact them.

-we went to visit my dad together recently, it was 2 hours on the train. He would chat intermittently but spent most of the time on his headphones! I need to try and think of somewhere he would really enjoy going and have a proper day out. Don't most 19 year old boys think it's a bit lame to spend the day with their mum?

So he could help the impact he places on your life but he’s chosen not to…

Would someone who genuinely cared about you make that choice?

My FIL hated having to go into a care home. However, once his care needs got to the point that his wife and sons were obviously going to become more carer than family he demanded to go to one. For their sakes. Because he loved them.

@cakedup it's not your fault.

This sounds a really positive plan. Keep posting, we're here and cheering you on.

This is amazing OP.

What a fantastic step to be taking.

My ds is a little bit older than your ds now, but we have done all sorts of things together (I am a single mum too and he lives with me)

I know it probably is not the coolest things ever to be doing, but we have been to the zoo, and recently went to a amusement park for a day, a friend came along too. I find the spur of the moment things usually turn out the best. Last week I had to take the dog to the vet so he came with me to to it. As our dog was admitted we didn't come home right away. So we went for breakfast and then we had a look in a few shops, he wanted some adaptor for his pc, and we really just had a wander around. Stopped off to get some bits of groceries from the supermarket, and he went for a haircut. When we got back he come and said how nice it was to just spend a day together even though it wasn't the most exciting of days. I honestly feel its just the general chit chat we had and the change up of normal day to day routine along with the one to one. It amazing how we don't catch up enough even though we live in the same house!

I do know what teens are like, so perhaps don't go with him to his local burger hang out or that type of spot 😃

The last time I had a proper conversation with dp, 2 days ago (he has been to ill to talk properly since, no doubt my fault for not keeping him awake) we were talking about a few days uk holiday we had planned/booked. It's to do with attending a concert of someone he has been a fan of for 30 years, but I would also enjoy it. I said I had made an error and on the last day of the planned day (after the concert so not missing anything) there was an important (to me) project I was meant to be delivering with a team of people. Yes the team could probably cover for me but wouldn't do it as well and I organise these monthly events. It's for people with SEND and he knows I value it highly. 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.

Aibu for above situation? Put what you know about him aside if you can. I know it was my fault for getting days mixed up. But the concert is 1 night, 2 hours away and we've booked 4 nights. He can easily cancel the last night if he really wanted to without paying.

Teens are generally v happy to spend time with a parent if they have chosen the activity ime.

@cakedup I have followed this thread from the start and want to echo how much we have got your back.

You have a lot of support on here as probably in one way or another, quite a few of us have also been in abusive situations and are speaking from experience. It’s only once we wake up to what’s going on and get validation that we can make changes.

Your are not being unreasonable or “indulgent” asking for help. You have been caught up in something and not been able to see the wood for the trees and many of us know what it is like.

14 years ago it took someone on here telling me I was experiencing verbal abuse to wake up to the reality of my marriage.

Again, above, you are not BU. You know deep down that a healthy loving person wouldn’t have got so cross and angry for a mix up of the dates: listen to those inner feelings and those niggles! That’s your compass that can steer you out of this.

Just think “hang on, would I react like this?” No you wouldn’t, because you are caring and loving. Use that as a marker for good behaviour.

And I’m sure your son will be delighted! Even if he grunts a “yeah ok”, in teen speak that means “I’d be thrilled!”

Does he generally “deteriorate” in his health if you do something he doesn’t like?

No, you were not unreasonable. Belittling an important part of your partner's work is unkind and not the action of a supportive boyfriend. It would not impact him for you to attend this meeting (that you organise!) but he wants you to miss out for no good reason. It is controlling behaviour.

Him getting ill immediately after you told him you'd had enough is NO coincidence. He's tightening the web because you can't be allowed to escape.

The belittling your work is a big problem. And the suddenly being very ill immediately afterwards is so very convenient to get the attention back on to him and his needs. I don't doubt he genuinely is ill, but I do believe he is not always honest about the current symptoms, he's using it to control you.

Many years ago a friend of mine's partner hit her. He then jumped out of a first floor window. They had to have an ambulance and police out to deal with his apparent suicide attempt. He broke his arm. He seemed to think that him hitting her should be a non issue because of course his injury and mental health we're so much more important. Thankfully she didn't fall for it and left him. It's a bit of an extreme example, but do you see the point?

Keeping you focused on his health crisis is preventing you ever holding him to account for his behaviour. You say you can't cope with his illness. His illness is not the problem, the way he is treating you is the problem, and he's using his illness as an excuse to get away with it.