Excited family - I'm with you and praying for you and your family. I understand the "work" of dealing with this disease. The appointments, trying this, trying that. I so hope your husband has success with treatment.
It feels like all of that is over for us. Well, it is over for us, but now I feel it. There is nothing more to be done. No more things to try, results to wait for, doctors to talk to. I now just sit beside his bed and listen to his shallow breathing. Yesterday he had removed his oxygen but mid way through the day when I asked if he needed it he said yes and let me put it back. He is still resisting the pain medication with some regularity. Cries out when it is administered through the butterfly. The nurse said it stings going in, so I guess he is just reacting to that, not understanding that it will help him with pain.
He had the nurse call me again last night (this morning) - was confused about where he was. I talked to him for a minute or two and asked him to let them give his medication to make him feel better and I'd see him today. He said ok, but when I called the nurse's station 30 minutes later he still was refusing. I just wish this was easier for him. I think it's the speed of progression, not understanding what happened, medication that has led to confusion, toxins in his system...all these things that are not allowing him peace.
He ate nothing yesterday, and only a sip or two of water and another couple of ginger ale. He was sleeping for much of the day. It seems to be at night he's most restless. The nurse did say he had a good amount of ginger ale after I left last night. My parents did get to see him yesterday. He was asleep when they brought the kids and just poked their heads in. Initially, when I told my dad that DH was saying no visitors he said that was fine, he'd rather remember him coherent and interactive from a couple of weeks ago. But I also think he needed the closure when he got there. Since DH was sleeping and covered and decent at the time, I said it was fine and he and mom just stood in his doorway for a minute.
My brother is on his way back today. He is driving up with his kids and his wife will fly up Tuesday. I thought he had changed plane tickets to FL where they were supposed to visit our parents this week for tickets here instead. Now I wonder if he's driving with the intent that he will have those tickets in another short time for a service. The nurse yesterday gave me a list of crematoriums. I asked what happens to him after his passing. For some reason, TV I guess, I thought the coroner would pick him up, but she said no, because it's an anticipated death, the coroner does not attend. Since we are doing a celebration of life it wouldn't be a funeral home either, but legally he has to be moved by one of those three, so I put dad on calling the crematoriums and getting that sorted out.
I'm warring with myself right now about his mother and brother. They want to come back. He has said no several times this week when I've brought it up. It's near the end and I'm torn between honouring his wishes and giving his family closure. My parents, I trusted to just stand quietly in the doorway and then leave. His family first of all had strain always, and prior to this there had been years of estrangement. He called them when he was diagnosed and said he had a nice visit when they first came to the hospital. The next day, I was in the room and he was short with them, his mom fussing and constantly firing questions at him and complaining about the nursing staff etc. He was relieved when they left. She is prone to histrionics and he and his brother have definitely had plenty of issues too; everything is always about him. Even with meds and things DH was dealing with and discussing with them, he would say things like "well if you're dealing with this just imagine how it was for me when I dealt with..."
I feel like I should call and tell them they can come to the hospice and wait in the living room or family room or quiet room and when I know he's asleep let them do as my parents did. I'm just slightly afraid there would be drama and he'd be disturbed and then he'd know I went against his request. I'm still feeling that would be the kind and right thing to do for them but our whole marriage he'd been very clear that we were his family and he'd left his family of origin behind.
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