right to hope

Both the hospice programs that I have experienced have a few things in common. One is a "Hospice Patients Bill of Rights", which always seems to include a "right to hope". I don't know exactly what this is supposed to mean, but I do know that I'm getting sick of it and I hope that there is some good reason that it exists.

Anyway, I called the priest who was planning to visit my mom today. I wanted to let him know that I believe that my mom needs time to speak to him privately, and that privacy is not the easiest thing to negotiate with my grandma around. I feel so strongly about this that if I were in Ottumwa right now I would happily pick my grandma up and sling her over my shoulder and walk 50 miles through a subzero ice storm just to plop her down somewhere else. Anywhere else. Apparently my feelings came through on the phone because after I finished speaking there were about 60 seconds worth of silence where I sat there thinking "shit, I just went into all that and now he got disconnected and I have to do it all over again!" But Father John finally did speak (?!?) and said that he would do his best but that last time he was at the house he saw 8 people walk in and out. It might not be that easy. I told him that with brain cancer my mom's time for being conscious is limited, and that I am doing everything I can to help her find some peace while she is able to talk. He said that he knows this is true about brain cancer, and that he has seen changes in her thinking already. Then he said, "and I think she should be in the residential hospice". I was stunned because he is the first person involved in this story (besides Freda) who has been brave enough to say these words. The hospice staff are all about respecting the patient and what she wants, which I'm glad for. But what if what the patient says she wants is really for the sake of protecting her mother from reality? Or what if what the patient wants is not the best thing for herself and those around her?

After talking to the priest, I decided that I need to go back to Iowa this weekend. I can feel time running out, and I want to be around while my mom can talk to me and while I can listen.

This afternoon I had a voicemail from Freda. She had just talked to my grandma who told her that my mom had a seizure today and fell again last night. I immediately called my grandma's house and Joe answered. He got confused when I asked about the seizure. He tried to tell me he knew nothing about it? Then he put my mom on the phone and she sounded completely exhausted but annoyed. Apparently she had told Joe and Louise that she didn't want her kids to know about the seizure, and he'd been trying to follow her direction.

Oh, this web is so tangled and messy! My mom softened up when I told her I loved her, and then she started to cry. Then we hung up as the priest was on his way over for the previously planned visit.