Page 28 | Aibu to feel I can't cope with dh illness

cakedup · 2024-03-30T15:53:23+00:00

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.

Uricon2 · 02/04/2024 10:58

cakedup · 02/04/2024 10:44

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.

If a friend, or your son in a few years time, told you exactly this situation about the concert and how upset they were that their project was being dismissed as unimportant, what would you think? How would you advise them?

murphys · 02/04/2024 10:58

cakedup · 02/04/2024 10:44

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.

Of course you are not BU.

I would say (look I am no expert as not in a relationship now, but had a long marriage) that most partners would say something along the lines of, 'oh well damn, ok then lets still go to the concert and head back after/ a day sooner so we are back in time for you to go to XYZ. Maybe next time we plan something lets check our diaries properly first'. Or "ok I will stay the extra day and you head back earlier"

Even though I was in a shit marriage, this is probably how it would have gone.

Of course he is so ill now that he can't speak to you. Its punishment for going against him.

But.... how on earth is it okay for him to go to a bloody concert, yet you can't go to work.

Original poster

cakedup · 02/04/2024 11:00

ARichtGoodDram · 02/04/2024 10:26

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.

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Yes and I've got to remember, I also would NEVER do this to him. I would manage my health like a responsible adult, would never make him feel guilty or responsible. I'm happy to listen to him vent when he gets fed up of his illness, if we go anywhere I always remind him we can go home anytime if he is feeling unwell. I cook and bring him food once a week. I'll use my annual leave to accompany him to his appointments. Happy to support him in these ways. But these things don't seem to be enough and what he wants of me is too much.

OP posts:

ARichtGoodDram · 02/04/2024 11:01

cakedup · 02/04/2024 11:00

Yes and I've got to remember, I also would NEVER do this to him. I would manage my health like a responsible adult, would never make him feel guilty or responsible. I'm happy to listen to him vent when he gets fed up of his illness, if we go anywhere I always remind him we can go home anytime if he is feeling unwell. I cook and bring him food once a week. I'll use my annual leave to accompany him to his appointments. Happy to support him in these ways. But these things don't seem to be enough and what he wants of me is too much.

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You are allowed your life too. You just remember that even if he has forgotten/doesn’t see it.

Boundaries are important and you’re allowed to have them

IAmThe1AndOnly · 02/04/2024 11:03

Op I am glad to see that you are taking some steps to fix things for you.

please don’t stop posting once this thread runs out, please start a new one and we will support you.

murphys · 02/04/2024 11:04

BrightNewLife · 02/04/2024 10:54

@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!”

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

Thank you for bringing this up. It's been 9 years for me. From this very site too. I posted and people came along with 'hey up, he did what'?? I thought it was quite normal, now I look back and see just how very fucked up it was. I couldn't see it then.

So yes I also think this is a big factor on why I will be here for OP. I don't know her, I don't even live in the same country as her, but I want to help her see that things can be so different. That life can be easier.

HippyCritical · 02/04/2024 11:06

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.

Ha. As I said in my last post, be prepared for a 'reaction' to your boundaries.

Happy to support him in these ways. But these things don't seem to be enough and what he wants of me is too much.

It will never be enough. This is him, not you. You could lie down and die in front of him and he would still feel lacking. It's him, not you. You cannot do anything to change that, to fix him, he will feel like that as long as he lives, it's the way he's wired.

Original poster

cakedup · 02/04/2024 11:11

BurnoutGP · 02/04/2024 08:33

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)

Giant cell arteritis - intervention did not come soon enough so now vision impaired. Had few days of high steroids and nothing since. They wanted to do a biopsy to confirm arteritis for further treatment but won't do it when bp is so high. regularly high BP in stroke risk zone (had several TIAs). Both parents died young of stroke/heart problems. On waiting list for a week stay at neurology centre as brain scan/eeg inconclusive, want to investigate for epilepsy and similar. Daily cluster headaches, frequent heavy nosebleeds due to high bp. And this is aside from prostate and back issues, both advised surgery.

OP posts:

Floralnomad · 02/04/2024 11:12

cakedup · 02/04/2024 10:44

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.

This a typical pattern . He hasn’t really become suddenly very ill he is putting it on to stop you stepping out of line . You need to stand your ground and step back before you waste your entire life

Hoppinggreen · 02/04/2024 11:13

cakedup · 30/03/2024 17:01

Part of his condition is drowsiness and if he falls asleep for too long his symptoms get worse. So it's down to me to keep him awake. This goes on for most days.

Its only down to you because you choose it.
You arent married and dont even live together so he really isnt your responsibility and if you disengage from him he will have no choice than to seek other help, possibly from people or organisations better equipped than you.
Just the hoarding, smoking and criticism would be enough to make me dump him

LAMPS1 · 02/04/2024 11:15

You are not being unreasonable for needing to cut short the holiday by one day.
This would be easily and quietly overcome in a normal relationship.

OP, you are not being unreasonable for being upset, worn down, overwhelmed, on the verge of a breakdown about any aspect of your current life with him in it.

Please make those changes as soon as you can.

Original poster

cakedup · 02/04/2024 11:17

Shimla999 · 01/04/2024 21:25

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.

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Not so much vital or preventing death. But dp says it makes a huge difference to him and symptoms get worse if he sleeps when in a certain drowsy state.

OP posts:

HippyCritical · 02/04/2024 11:20

@cakedup Please be aware that people like this can be very, very believable with their lies. There will be some truths in there but it's important to be aware that anything he has told you may not be true.

Original poster

cakedup · 02/04/2024 11:21

zinky · 01/04/2024 22:08

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

And has left the oven on (with food) overnight many times.

OP posts:

Hoppinggreen · 02/04/2024 11:21

Do his symptoms flare up when you disagree with him or "upset" him in any way?
I am not suggesting he isnt genuinely ill but from my experience even genuinely ill people are not above using their illness to control the people around them

Original poster

cakedup · 02/04/2024 11:26

Highlighta · 02/04/2024 09:16

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.

Well a lot of the time he misses his appointments because he feels to unwell. So I can see that happening when I've arranged to go with him.

OP posts:

Original poster

cakedup · 02/04/2024 11:28

Hoppinggreen · 02/04/2024 11:21

Do his symptoms flare up when you disagree with him or "upset" him in any way?
I am not suggesting he isnt genuinely ill but from my experience even genuinely ill people are not above using their illness to control the people around them

It's easy for him to do. Because when he gets upset, agitated, angry - his bp goes through the roof. This can cause dizziness, nausea/vomiting, heavy nosebleeds etc So I probably do have a direct and immediate effect on his health.

OP posts:

TheShellBeach · 02/04/2024 11:31

cakedup · 02/04/2024 11:17

Not so much vital or preventing death. But dp says it makes a huge difference to him and symptoms get worse if he sleeps when in a certain drowsy state.

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To quote Christine Keeler,

"Well, he would say that"

Original poster

cakedup · 02/04/2024 11:34

BurnoutGP · 02/04/2024 08:54

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

No he is not neurodivergent. He has a ridiculously high IQ and is definitely known to be eccentric.

OP posts:

Hoppinggreen · 02/04/2024 11:34

cakedup · 02/04/2024 11:28

It's easy for him to do. Because when he gets upset, agitated, angry - his bp goes through the roof. This can cause dizziness, nausea/vomiting, heavy nosebleeds etc So I probably do have a direct and immediate effect on his health.

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So you have to do what he wants and/or put up with his nastiness in case it makes his BP go up?
Thats no way to live

BurnoutGP · 02/04/2024 11:35

The keeping awake is absolute and complete nonsense. I dont believe it for a minute. In my 30+ years as. GP I have never told anyone they need to be woken every 2 hours. He is keeping you in a state of sleep deprivation as well.
Sleep deprivation often makes chronic diseases worse so being woken up every 2 hours is rubbish.
There is no way that sleeping a good sleep will make whatever he actually has (GCA/TA, autoimmune disease etc) worse. This seems a ploy to to keep you trapped.
As a PP poster has said there will be some truth/something prev mentioned in passing that he has gripped onto Consciously or not.

Iwrotethelyricstoaxlf · 02/04/2024 11:36

cakedup · 02/04/2024 11:17

Not so much vital or preventing death. But dp says it makes a huge difference to him and symptoms get worse if he sleeps when in a certain drowsy state.

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So this at his behest. Not the GP.

Again. His wants vs your needs.

I have a feeling if you just turned up there you’d find a very different person to the one on the end of the phone.

Does he track your movements also?

Original poster

cakedup · 02/04/2024 11:36

murphys · 02/04/2024 10:20

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....

He told me.

OP posts:

BurnoutGP · 02/04/2024 11:37

cakedup · 02/04/2024 11:28

It's easy for him to do. Because when he gets upset, agitated, angry - his bp goes through the roof. This can cause dizziness, nausea/vomiting, heavy nosebleeds etc So I probably do have a direct and immediate effect on his health.

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So you're directly responsible for his BP. Madness. You are being manipulated completely.

TheShellBeach · 02/04/2024 11:37

cakedup · 02/04/2024 11:34

No he is not neurodivergent. He has a ridiculously high IQ and is definitely known to be eccentric.

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Same here.
And I'm autistic.

But I think it's irrelevant wrt your controlling BF.