To think my husband is gravely ill at the wrong time? Thread 2

[MyOtherCarIsAPorsche]

Continuing from 1st thread.

Have you recorded him?

It is tragic. Truly tragic, and I do feel for you.

Thing is, how long can your children let it go on? Your grandchildren can't be exposed to it. History and 'it's not his fault' aren't enough to prevent the damage his explosions will do them.

@MyOtherCarIsAPorsche I am sorry if my post upset you. I do not think his behaviour is ok nor the way he speaks to you.

If anything it's made me think about my behaviour toward my lovely DP.

Also to add my DP gets counselling as part of his extremely stressful job. He also lost his mum to bowel cancer when she was fifty and finds lots of things triggering.

He is prone to depressive states and I am generally the far more positive one. He finds it very difficult to watch me so ill, upset, attached to machines, if my mood slips.

I really hope things get better and I am sorry again if I sounded like you need help. Sometimes I just think it does help as you can say exactly what you think without having to watch the response.

I've not been upset at all by any responses on this thread. All points of view are very welcome and as equally valid as any other.

In justifying my position and H's position I am aware that my responses come across as defensive.

I sincerely apologise if anyone feels as though they have upset me - that has never been the case.

I'm possibly backed into a corner at the moment.

Possibly depressed.

I agree that my grandchildren should not be exposed to his explosive behaviour. They have been and he's scared/upset them. The only alternative to that is me looking after them outside of my own house, meaning I would hardly be in my own home.

I do feel more comfortable in my own home though - especially now. In fact, if I had my own way, if I didn't have to, I would barely go out.

My visits to my mum have dwindled as I feel I can't face her (not that she recognises me anymore) I feel like if I started crying in front of her I wouldn't be able to stop. And that would not be good for her.

I cry every time I go to childmind my granddaughter an hour's drive away. My daughter asks how I am and I burst into tears. I just want to stay home and hide.

Feel hopeless really.

I'm crying now - can't go to bed yet because I know I can't settle with this pain I'm getting. No point lying in bed awake it makes the night seem longer. I'll wait until the early hours, I'll be more exhausted and more likely to fall asleep quickly.

Hopefully no sleepwalking tonight I'm hiding the TV remotes.

Of course you are not stupid . This is not your fault. Of course you have stood by a man who has had a near fatal illness and curative surgery.
You could not have known how much of this was temporary and how much long term. You still can’t know for sure.
You have behaved with hope and dignity and love and that makes you wonderful.

But as this becomes likely to be the new permanent version of DH you have to face the question of would you choose to spend the rest of your life with this person. I agree that being a relative is pretty awful - not sure if it’s worse than being the sick person ) . Much love - your mumsnet team is here when you need to rant. Xxx

@picklemewalnuts

My daughter has video recorded him when he was in full flow. He continued even though he knew she was recording him. Even when he watched the footage back he was twisting everything said to serve his own agenda. He said that she didn't record what had set him off in the first place (me 🤔) and that she was just as conniving as her mother (me) in trying to make him look bad.

He's still convinced that others are responsible for 'setting him off'. That has never been the case.

My evening has deteriorated somewhat now - I went to make a hot drink, (he's drinking bottled beer) was getting a spoon out of the drawer. Apparently I was in his way. He was stood tutting behind me. I stood aside. He said Don't sigh you dramatic cow. I would normally react and I didn't. I didn't think I sighed? He makes me question myself all the time. He pushed past me, took a bottle opener out of the drawer and slammed it shut. I would normally react and I didn't. He stomped off (literally makes the doors and walls shake) muttering all the names under the sun - I didn't react.

Doesn't make me feel any better though.

He's sat down, opened a beer and within seconds he's fallen asleep.

I'm so sorry to read your updates OP. It sounds like a living hell.

A good friend of mine had a ruptured Aorta. Luckily her DH was at home when she collapsed, and she survived by the skin of her teeth. But it really changed her - she became reclusive, often rude at attempts at contact. She stopped going out of the house, and they ended up moving to somewhere really isolated which didn't make sense given the distance needed for medical care. It was like losing her twice - not only the first time thinking she wouldn't survive, but then losing the person that she used to be. She was an absolute stranger, not someone whose child I'd cared for, sat with wine when she was crying about being on her own, encouraging her with the relationship with her later DH.

Just one thing to consider - they say that to save someone, you have to put on your own oxygen mask first.

@Badger1970

I hope this doesn't sound warped but it's good to hear that this 'thing' happens. That it's real and not happening 'in my tiny mind' as H tells me.

The more people can give me examples - the better it makes me feel. Sorry that does sound warped.

I'm not revelling in others' misery - just the opposite. I don't think that I have come to terms with it yet.

I have said this before - I came away from hospital that first night thinking he would die through a lack of staff/care. I was planning his funeral on the long drive home. I was grieving.

I wonder if I'm still grieving because I still think that I've lost my husband.

You nearly lost him that initial time, and you've since lost the person he used to be. No wonder you're reeling.

I remember reading a lot at the time about heart surgery and post surgical depression/anxiety/personality change and it seemed horribly common.

My brother had a cardiac arrest a couple of years ago and was in an induced coma for over a week .
He has recovered physically but is now crippled by emotional changes and is no longer the person he was .
He is not aggressive or prone to outbursts .

The thing about ignoring the outbursts is that it's actually exhausting. It means you need to be "the bigger person" and use energy to keep yourself in check when you want to say oh fuck off you miserable sod.

I don't know how you're doing it, OP, without bloodshed.

Hi OP, sorry you're having such an awful time. Maybe other posters might be able to answer this, but might medication not be able to help with his anger/rage/personality changes? Anti-depressants, anti-psychotics, that sort of thing?
I have an anxiety disorder and used to be prone to horrible outbursts of rage. The right anti-depressant changed my life. I know this may not be the case for your husband as his is a brain injury.

Honestly they might help, but DH would have to accept and admit that he has changed and these changes are problematic in the first place and that isn’t going to happen. He’d need to go to the doctor and open up about it all and how it affects everyone, and he doesn’t seem to have the insight.

I agree with Fraaahnces .

Two years on my from my brothers episode he is now seeing (privately )a clinical psychologist and is on medication .FWIW the professionals say it's not brain damage (though there was oxygen loss )that is the cause of his emotional state now .I'm not sure how they can determine that .

I'm not sure if he has insight. He's well aware of how much he upsets everyone. He apologises profusely.

He's got in his head that his days are numbered and that he's a ticking time bomb about to explode and he's frightened. He wants to make the time he's got left count. He's still spending money like it's going out of fashion.

I can understand that. I felt that way when I was young and I didn't understand about my VSD which the doctors had said was inoperable when I was a teenager. It frightened me for years - thinking I could drop dead any minute. An irrational thought that wouldn't go away.

He doesn't think he's depressed so he doesn't want counselling or drugs. He thinks he can see his entire future clearly and he wants to control it, and me, as much as he can. And we clash.

Fortunately, he's occupying himself more during the day now, our clashes are less frequent and I can get on with my routine.

Had an awful start to the day. Hard frost on the car to scrape off. Then fighting dogs landed on top of pushchair, in between grandsons, after dropping granddaughter at school this morning. I'm shaking like a leaf and I'm flaming fuming.

What an awful shock @MyOtherCarIsAPorsche! I hope the boys weren’t hurt! I am wondering if you could maybe shift the money and limit his access before too much damage is done???

Sorry things are still tough, the dogs incident must have been terrifying. Hope you have a calmer weekend

That sounds absolutely terrifying. What a shock . Hope you and the children are ok.
much love xx

My grandson continued to have fits yesterday and had a much bigger one today.

We were shopping in a town 20 miles away when we had to call an ambulance. He's in resus at the moment.

He's been having fits for a year and no official diagnosis yet. He's had several EEGs. He been to epilepsy clinic once - his next appointment is end of this month.

Sorry to hear your GS is having such a rough time of it, it must have been really worrying for you all, being away from home when it happened this time. I've posted before (on both of your threads, under other user names) and often think of you and your family. You sound like such a wonderful person, who has been dealt a really crummy hand this year. There are lots of us rooting for you and your family, and sending lots of positivity your way.

Poor wee man! So terrifying for everyone. Are you at a different hospital? (Maybe that will help…)

Thinking of you and little grandson

Grandson is great now. We've no idea what brings on his episodes. We think these happen at night mainly - he makes grunting noises and appears unresponsive when checked, (often eyes have gone back/up and he's twitching and unresponsive/confused) he often poops during this time and is completely unaware he's being changed (lies still, no movement). He is frequently sick during the night and again, appears unaware that his bedding is being changed. My daughter is utterly exhausted because of the time she spends attending to him during the night. She sleeps with one ear and one eye open for fear of missing him choking on his vomit. Then she has to go to work the following day.

We have noticed though, when we've had to call an ambulance (when his episode goes on more than 5 min) which has happened twice, both times his blood sugar was 3.4 (don't know the units).

I'm assuming this figure indicates low blood sugar? Wondering if it is coincidence?

On Saturday we had been shopping, then to a Costa (the children like the macaroni cheese) but T hadn't eaten anything. He was in a high chair and normally feeds himself. Mum tried to feed him but he seemed confused and was gazing into the distance. His face was mottled/blue tinged. He was also shivering (physically - whole body shaking) despite it not being cold. About half an hour after leaving Costa we had to call an ambulance as his eyes had gone 'up/back', his arms were jerking, he was making choking/grunting sounds, his heart rate was 120 and this went on past 5 min. Before the ambulance arrived he had a series of periods of unconsciousness where he was completely still and couldn't be roused and then further eye rolling and twitching episodes.

The hospital said they were happy to release him because he has an appointment at his usual hospital (epilepsy clinic) at the end of this month.

Wonder if/when we'll get to the bottom of it?

Any news OP? I do hope you are finding sole peace and that the smalls are ok

@Wallywobbles

Many thanks for asking.

Nothing is 'normal' anymore.

H received his latest scan result this week - which was good news. But he's sort of twisted the wording and is worried/angry that it isn't a more positive outlook. But he doesn't need another scan for 12 months - I think that's excellent progress but he doesn't see it like that.

H and I watch tv in different rooms. We sleep in different rooms. We're different people: him because of his surgery and me because of his behaviour. He's upset our daughter by making disparaging remarks about her children (his grandchildren) which has, in turn, upset me. H is not worth talking to anymore - he's so angry/aggressive/cold/hard/nasty.

I usually absolutely love this time of year. (Watch Christmas films from September etc. ) But not this year - I feel very flat. If it wasn't for having childminding commitments, I wouldn't get out of bed.

I can't do anything extra - just managing the essentials. The house feels awful - haven't bothered with housework for far too long. I have been previously known to be obsessive with regards to housekeeping - can't believe I've turned into a sloven. I can't read a book, I can't knit, can't watch a whole tv program - I can't concentrate and I get bored. And I'm losing 'chunks' of time - it just runs away from me. H will ask where I've been for the last 2 hrs and I've no idea that amount of time has passed.

Our grandson who has seizures is going to have some sort of glucose monitoring done soon (hopefully). It's been noted that both times he's been ambulanced to hospital, his blood sugar has been low. I could list his symptoms and behaviours but I'd be here all day. His behaviour can be 'off the wall' - this is what H has been commenting on and upsetting everyone.

Our grandchildren born at the beginning of September are doing really well. They were very unsettled at first with possible colic/reflux and mum and dad were absolutely on their knees with exhaustion. Some nights they were getting a couple of half hour periods of sleep per night. Then they were recommended Colief enzyme drops and 'voilà' - happy babies now both sleeping through. They are now putting on weight at a good rate and thriving. They are smiling, cooing and even have the odd chuckle.

I'm going through the motions when I should be having the time of my life. I may become a hermit - I've been inventing the most convoluted reasons for not having to go outside. Even going to the tumble drier in the garage fills me with dread. When I go to my daughter's house, we now stay in, whereas I used to walk for miles in all weathers when I went to her house. When I have to do the school run, I try to get H or my son (if he's working locally) to do it for me. If I have to actually go to school, I just look at the floor and avoid looking at all the people I would normally say hello to and pass the time of day. When they say hello to me, I'll just look up and smile. I can't remember the last time I went to a supermarket. I have been asking H and my daughter to do the food shopping. I feel more locked down now than during the pandemic.

There's a big family birthday party coming up and I don't want to go - any ideas for a good excuse? I'm tired of thinking ....