Combative is definitely the word of the day.
The nurses did tell me what kinds of things I may see at the end. They mentioned the mottled skin and the respiration. The day nurse was still there when I went back this evening. She said it would be best to bring the kids tomorrow, so that is our plan. DH is no longer eating. He is drinking very small amounts (he never finished the cup that was there for the whole afternoon) and I think will still chew on a Popsicle but not finish it. They have started using a sponge to wet his lips and mouth.
They now have him on a pump for his anti-anxiety medication - can't remember what this one is called. Hopefully that will do a better job of keeping him on an even keel.
It was a very up and down day. He wants me there, but then when I am he's pretty combative with me. Apparently he actually got out of bed last night, setting off his alarm, but made it to the window before the nurses got down to his room (he's the last one on the hall.) When they asked what he was doing, he said he'd been dreaming that he was supposed to meet me for danishes. Not anything we've ever done in our lives, but I had bought a package of them for the kids the week he was home from the hospital, so I guess that's what his mind is working with. He said he guessed he wasn't supposed to meet me and would go back to bed.
Even though he wants me there, he gets angry with because I won't help him get up and dressed and leave. I started off being more playful about it, but he wasn't responding to that and kept trying to get up - set the alarm off about nine times through the afternoon and evening. Finally I became more firm - "nope, sorry, I know you'd like to get up but it's for your safety. You're not strong enough to stand and walk on your own." That's when he got really mad. Oooohhh - if things were what they used to be and he wasn't working away at dying I'd have given it right back to him. He is definitely fighting it, which is very hard to watch. I worry about the kids seeing him like that, but both still say they want to be there. At least there are other areas they can go if it's too much - living room, family room, quiet rooms.
Soon after I got home tonight he called DD on her phone. She brought it to me and we talked for a few minutes. He seemed ok, although confused. I said we'd all be there tomorrow and he needed to get a good night's sleep so he'd be awake for us tomorrow. After he hung up I called the nurse. She said whatever I told him did the trick. He'd been agitated and angry with them for not letting him get dressed and go but calmed after I spoke with him. He refused his 10:00 pain relief but allowed it after we spoke which was around 11:45. So, pretty late and he was likely in a fair amount of pain by then. I'm going to discuss a pump for that also tomorrow. So I guess he's angry with whoever is with him and in his mind stopping him from what he wants to do.
I have been told that about the person hanging on until everyone leaves the room, but good reminder that I need to let my kids know that. That they may not be right there for his last breath and that's ok.