Pat, he's not disoriented, but I would say he cannot focus on much. What I mean by that is that he can't read a book or watch a movie, except for right now he IS watching Amazing Race. He just can't concentrate on too much at a time, and I think a lot of that is from the dilaudid. When we talk, however, he's very easy to understand and makes perfect sense.
He does have his iPod with him and has his favorite music loaded on it, but so far I haven't seen him want to listen to it much. I offer, but he declines. That kind of surprises me because he's a musician and playing guitar is a passion of his (as is music). He just seems SO frustrated at being here, or having to be here...even though I have given him the option of going home and using Hospice as and when we need them. When I asked him why, he said "I'm going to beat this infection, and then go home."
Rachel...TPN: I am getting different answers on this one. The nutritionist has visited Stephen a couple of times and told him that he didn't see him getting off the TPN, but he "could if he wanted to." When we asked Stephen's nurse tonight, she went into this huge explanation that the TPN wasn't contributing to Stephen's swelling in his legs and that the TPN helped balance Stephen's electrolytes. Her thinking is that if he stopped taking the TPN, it could be a bad thing for his body. I asked her to put a call into the doctor and see what she said tonight, and if it was approved we wanted to stop the TPN infusion for the night.
I didn't think stopping the TPN would be a bad thing, at least temporarily, but she tried to convince us otherwise. Stephen said that he felt if he didn't get the TPN, he might actually develop a real appetite. The nurse said that the TPN shouldn't affect his appetite at all.
Thank you for all of your support during this time, truly.
Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Sir Spheres 2/2/2010
Admitted to hospital 4/23/2010
Passed away 5/09/2010