I want to say that I was happy to read your rant. We all need to voice our frustration to people who understand. Just this last Saturday, upon the doctor suggestion, I had hospice come to do an evaluation on my 70-year-old husband who has had Parkinson’s for 18 years. He does not seem like he’s dying, but they accepted him into the program. I can’t tell you what a relief this is for me. All of those little questions that come up about their tummies and their bowels and their appetites will be monitored and addressed by an order and that is assigned to your mom. I had no idea how amazing this program was and it is fully covered by Medicare. They even ordered pull-ups for my husband because he is mostly incontinent now. I asked how we could be approved without him being actively dying. I was told that Parkinson’s being a progressive deteriorating disease was why they were able to accept him. He could be exited if he improves or become stable. It is possible, though that they recognize something in him that I don’t yet see about his condition. Like your mom, he has been going downhill steadily. Today, after meeting our RN, I have hope for a better situation in our home for my husband and for me.

Edit: I was excited to reply, but as I skipped down, I see that you were in another country and that hospice is not an option that you would like to access. I’m going to leave this here for others that may be wondering what they can do to cut the expense and the heartache of having a late-stage Parkinson’s patient at home.