Trying to Understand

The fluid is out of Dad's lungs, but they've only been able to get 1/2 a pound off of him. According to most of the doctors, he's ready to go home. He still has about 49 pounds of fluid they can't get off. They want him on a strict renal diet. We don't want to restrict his diet that way. I again raised the possibility of hospice, so Sister called hospice and found out they wouldn't take away his insulin as she had thought. She began to be more open to the possibility. I explained again that I want him comfortable at home, and thought hospice could get him a hospital bed so he could sleep with his head elevated, oxygen so he wouldn't struggle so much to breathe, medication to manage his pain and anxiety, and the emotional and spiritual support he needs.

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Sister finally called his doctor. His doctor says he's not ready for hospice. He thinks Dad still has a will to live, and that if we mention hospice he'll give up and die right away. He said to forget the renal diet and let him eat what he wants (of course, if he's not on hospice, that means they'll ship him back to the hospital in a few days when his lungs fill up with fluid again). The doctor promised a hospital bed and medication for the pain and anxiety.

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The diuretics are not getting the fluid off. If he goes home on a regular diet he will retain more fluid. His lungs will fill up again. What is the goal? How long can he live like this? Why is hospice such an evil thing? Far Away Sister says that I am more familiar with hospice and thus more comfortable with the idea. She also points out that this doctor resisted putting Mom on hospice. The irony is that he is the medical director of a hospice program. How can he direct something he doesn't believe in?

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Sister now has me feeling like somehow the fact that I have suggested hospice means I want to kill Dad. That's not what I want. I do want comfort and peace for him. I do want him to be able to enjoy whatever life he has left. I do think he's dying. Today Dad asked Sister about Golden, who they will probably put down next week. She told him that when Golden wants to get up, he barks and one of them goes over and lifts him up. Dad said that was no quality of life and they shouldn't let him go on like that. This was after Dad called for someone to help him get out of bed and sit in a chair for a while. But Sister thinks Dad isn't thinking of death and still has a will to live. I just don't understand.