So sick and tired of this

MrsVT said:

Im sure they know those time spans we are told, those very common 3 to 6 weeks / months, are not the truth

I have often wondered about that. I think the medical staff do their best, and I fully appreciate that they need to be very careful in providing any estimates of remaining time. But still, I wonder.

I wasn't expecting my wife to die so quickly - and neither was she. I think we both thought that she had weeks left. But, looking back, I suspect that the medical staff knew that the end was imminent: they see a lot of the same kind of thing, so they must have a pretty good idea of how things will probably go. If indeed they were thinking that, I wish that they had told us.

JealousOfAngels said:

Towards the end, giving meds and taking her stats every 15 minutes, calling them through to the palliative care line every hour. Our GP has done the calculations and worked out that I had a total of 4 hours sleep in 5-10 min bursts over her last 8 days.. living on 20-30 double espressos a day, nothing else. That was GP visits twice a day, district nurses every day, hospice at home every day, paramedics overnight every night.

Your post is very tough to read - you have been through hell. But I am thankful that you are now getting some help.

My experience was nowhere near as bad as yours, but it does have some similarities. For the final two weeks of her life, my wife was at home - which is what we both wanted. The days were generally okay - but the nights were terrible. I just remember multiple phone calls to - and visits by - the various medical staff, every night. And that all became counter-productive: because both my wife and I were so exhausted by the night times, we really couldn't get a lot of value out of the days themselves.

When my wife finally died - after a really horrific final night in which several mistakes were made by the medical staff - I realized that I had lost about a stone in weight over those two weeks. (And I am not a big guy anyway.) And, despite the horror of what had just happened, I surprised myself by sleeping very soundly for the first couple of nights: I think, because I was just so physically spent.

This was all about 22 months ago now. But it still feels like yesterday, and I have non-stop videos running in my head which I just can't switch off. The only thing which helps me is socialization, and talking to people.

I wish you - well, I wish all of us here - all the very best. As I tell myself, we all have a responsibility to carry on, and to try to make the best use of our remaining lives, as living testaments to our lost partners. But it is very, very difficult ...

I have become in a way mums carer - from getting her up, meals, empty commode, to getting her to bed. 
None of which I begrudge. After all, she did it for me for plenty long enough! 
It never got that far with my beautiful Valen. Though I had to wash and shower him, help him to cook, get dressed and in the last few days steady him as he walked. But not as much as I’m doing for mum .

Also with Valen we were so very very fortunate that we didn’t get to him being in to much pain. 
Mum is literally yelping and calling out in pain. Today I held her in my arms as she cried with pain, fear and frustration. 
My sister, who is helping as much as she can, having only come out of plaster 2 weeks ago after a wrist operation, said “I’ve spoken to X, (her husband) about……..

And tonight it hit so incredibly hard that she goes home and talks to him. 
And my brother can talk to his wife about mum. 
I can talk to Valen. 
But, well, you all know.

I just has been so hard coming home and not having him here to put his arms round me. For me to be able to cry on his shoulder. For him to be tapping away on his laptop sourcing a wheelchair, reading up on recovery etc. For me to be reassured by him. For him to make me laugh.

Bloody hell, this is crap.

Yes it is. ….sounds like your doing an amazing job for mum though. Just the caring part is exhausting and yet we all step up when needed and go into overdrive doing what we have to.

But the pain starts for us as you say when you return home and he’s not there to support you anymore or help with decisions and just to make you laugh again.

16 weeks today -  4 months - of this nightmare say no more we all know what it’s like one whole summer gone without him now and having to deal with everything on your own and no one here to look after us.

MrsVT, I feel for you,having to do that then coming back to a empty house. Not having somebody there for us is hard.

Toosoon, thinking about you today.

Both of you,well everyone take care.

I’m feeling a double whammy. 
Looking afire mum and seeing her in such pain and distress.

And in 24 days it will be an unbelievable 1 whole year since my beautiful Valen was horrifically ripped from my side.

That is an awful lot to deal with, emotionally and physically. I hope you are feeling vaguely sane. Xxx

Oh Mrs VT. I've just been having a big old cry and I'm so sorry for what you are going through. I cared for my dad, then my uncle and then did it all over again but worse for my husband. I keep reliving it all. I'm sitting here feeling so sorry for myself and for you and all the other people suffering here. Hugs and love to you. X

Feeling this.  I keep escaping from home. Xxx