Trying to be Patient

Sister is having a hard time with Dad's decline. She's been avoiding him as much as possible. While I was up there I took care of a number of things that she or Brother could/should have done for him. I bought him new cordless phones, additional towels, various small items.... She says she's on board with hospice, she's just not comfortable talking to Dad about it. Fine. So I talked to Dad, and he wants hospice. Among the things he has said, "What do I have to live for?" "It's time." "Why can't I have bacon? Who put me on this diet?" "I'm not comfortable in bed." (He's supposed to be on bed rest.) "I need to go down for meals, this apartment gets too lonely." "I don't want to go back to the hospital." "Sister has some strange ideas." I told him she was having a hard time dealing with things, and that's why she wasn't visiting, he said, "I know."

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Dad has gotten very weak. Transferring from his wheelchair to his recliner exhausts him and leaves him short of breath. Sister asked me to meet with hospice, as she wasn't comfortable. First the appointment was to be this morning, then at 2:00, finally at 3:30. It was much later than I had planned to stay, but I did it for Dad.

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So the social worker from hospice arrived. Dad didn't have any questions. He understood what it was about, he wanted to sign the paperwork right then. So, I called Sister,who regularly pages the doctor, who had told her he'd support us whatever we decided. I called her cell, and she answered quickly, and explained she couldn't call the doctor because she didn't have a signal. I don't know how I managed to talk to her. The hospice offered to call the doctor, but Sister insisted she needed to talk to him first.

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Bottom line, doctor won't order hospice. Depending on who you talk to it is because there is a rift in the family and the whole family isn't on board or because he wants to make sure that Dad understands this is end of life care and it is really what he wants. He said he'd talk to Dad about it on his next appointment (a week and a half from now.) Sister is supposedly going to move his appointment to this Wednesday and take a day off work to take him to it.

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Brother has decided to get him in with a kidney doctor and ask about starting him on dialysis. A friend told him he should get a second opinion.

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It was 9:00 when I got home this evening. The only reason I even talked to Dad about hospice was because all my siblings thought it was a good idea. Far Away Sister and I are both very frustrated at this point. I'm trying to be patient and remember that Brother and Sister are having a hard time dealing with this. But it's hard, when they keep contradicting themselves all over the place. It's hard as I sit here exhausted from a long day and still have to write a sermon for tomorrow. Because Dad isn't on hospice, they will continue to discourage him from going down for meals because he's supposed to be on bed rest.. If he has difficulty breathing, they will rush him off to the hospital. I also discovered that he hasn't been getting all the treatment the doctor ordered. If Sister would go visit him occasionally, she might have noticed this. But she's avoiding things right now. Avoiding isn't going to keep him alive. It's not going to get the 70+ pounds of fluid off of him. It's not going to give him the quality of life he wants and deserves.