A slow decline

[Manyana13]

Tink I am so sorry, I have only just seen your thread as have not been on here for a wee while. I am thinking of you, take care of yourself. I could not even begin to imagine what you are going through. Big big hugs to you from me and my creatures.x

[Tink]

thanks again, everyone.
if i don't update, it's because things are either fairly the same or so up and down that i have no idea what to say as far as his status. good days and bad days and sometimes it changes in itself several times through the course of one day. maddening.

[Mags]

Originally Posted by Tink

thanks again, everyone.
if i don't update, it's because things are either fairly the same or so up and down that i have no idea what to say as far as his status. good days and bad days and sometimes it changes in itself several times through the course of one day. maddening.

We understand what you are going through Tink, no need for words ....... just remember we are thinking of you both *hugs* xx

[dandysmom]

You both are in my prayers, Tink ......

[Tink]

Update: We had a crap day in the ER on Monday morning. I really am beginning to loathe the hospital and the miscommunications in staff that cause patients and their families utter frustration. *end of rant* Just had to get that off my chest.

He needs more surgeries but there is only one he might possibly consider and that is the one to save his legs..aneurysms in both which is why the lack of circulation and pain.
He had had his fill for the day so we left and he signed an Against Medical Advice form because he just did not want to be admitted for more torture.
Came out and it was pouring down buckets and a horrid drive home.
His mum has been emailing, I think she wants to push for him to be more open to treatments and while that is understandable I am so done with this situation I'll just leave her to it..I'm too exhausted and I'm tired of being the one trying to get him to at least open up and talk. At this moment, I'd be quite happy to pretend nothing's wrong.

[angieh]

Oh Lord Tink - not sure what to say. K's mum is desperate to try to get K to do anything that might save him, understandably. It doesn't help anyone that K can't talk about it, and his wishes, to someone who could help. Does the hospital have any patient counsellors or advocates or anything like that?

This is dire straights for you, I know. Virtual hugs is all I can offer and do so gladly.

[Tink]

Thanks, Angie.
He actually pretty much knows he doesn't want 90% of what they've got to offer and the 10% he is interested in still has significant risks. I guess what I meant to say is I'm tired of being the voice of reason, trying to get him to open up to listening to more of treatment options before making such harsh decisions. The man shoots down anything to do with that before you've got it all out of your mouth. I just want to know he's making an educated decision. I will respect his wishes but I need to know he truly does understand. I know his Mum is pushing for more. I'm just so tired of being the one to communicate this for everyone and if they have their opinions I think they need to talk directly to him from now on. He's more likely to talk to me than family but I am just absolutely exhausted with it. I'm at the point of feeling like "Well, at least I know I tried my best" so when he's gone I won't be full of regret. I am the only one with access to the soft side of him so to speak; he hadn't communicated with his family for years till we started dating. But I can't take this. At least for now, I'm out of it. Maybe just a break or forever I don't know but I'm so tired of worrying and bringing up the difficult questions for everyone, K included. His family worries but they don't voice it directly to him, it's through me. I just feel a little angry, like everyone gets to carry on except for me. So I'm sitting this out, I'm spent.

[angieh]

You are between a rock and a hard place, being a go-between.

Any chance you could get some respite care for him?

[PoshPuss]

So sorry Tink, this is so exhausting for you. Do what ever saves your sanity and don't even think about recriminations. You have done and are doing all you can- time now to look after yourself. Wish I could say or do more but if being a sounding board is helping - feel free to express yourself.

[Tink]

Thanks, guys. It is nice to just honestly say these things without worrying about hurting anybody's feelings or ruining relationships.