Wednesday 4/20/11. I am at the hospital. Bill is much more alert but has visual and auditory confusions and misperceptions. He does have his voice back and talks pretty well. He said he was looking forward to getting better.
But he was in significant pain (8 on a scale of zero to ten, ten being the worst pain he's ever experienced) and we eventually asked for morphine, which could not work fast enough. An hour after its administration, Bill is finally resting and is in and out of sleep. We watched a bit of Eve's video. He gave a big smile when her baby Insee appeared on screen. He could not believe how big he was!
At 2p, I will have to leave here to go get Sophie and Olivia; neither of the two nannies is available today. I will then bring them back here at the hospital so they will have a chance to see their dad and hang out in his room now that he is out of the ICU.
At 3p today Abby and I will meet with the doctors to talk about logistics of moving Bill out of the hospital. We will try to determine hospice facility or home would be better for him.
When I told my Korean mother that we are thinking of taking Bill out of the hospital she became very very indignant. She could not believe that his loved ones would let him die. She, very heatedly, talked about her sister-in-law who was kept alive for five years before expiring. She doesn't understand the concept of quality of life. For her, the important thing is to be alive, no matter how poor the quality of that experience. And the idea of respecting the patient's own view about it does not make sense at all to her. "Of course he'd want to live", she shouted. She can't imagine anyone not wanting to continue living.
My sister Sunny is the same way. She along with my mother have decided that the hospital wants to save money. "They must be trying to kick him out".
Ugh... I just don't need this now. While I am trying to come to terms with hospice care (in one form or another), my family thinks I am abandoning him to die if we did so.
Kris, I'm sorry to hear that your mother and sister are questioning your thought process during this stupendous decision. It's difficult enough without the added pressure.
ReplyDelete--Janet
Kris - I too am saddened to hear of the drama and pressure on you from all sides. Bill has always focused so much on staying healthy that he doesn't talk about death enough to give confidence or comfort.
ReplyDeleteThere is no wrong decision you can make.
Daily dialysis has allowed some brief clarity. Without that, dying at home with young children could be more frustrating and confusing - maybe more scary than it needs to be. Plus it seems your support network is opposing moving him - so then instead of the Rockwell picture of peace - you'll want to accept that you can see what you'd want for Bill and your girls, and you can try to offer it - but death is no more fair than life.