My Mom passed away in October of pancreatic cancer. We had tried so hard the whole time to have hope. The week before she passed my Mom woke up and thought she was better. I think she forgot she had cancer and thought she was recovering from some an illness. She wanted us to call the family and tell them the good news. She kept saying how glad she was that she had gotten up that day. That night the hospice worker showed up and asked her how she felt. She told him she felt so much better and he said " Most people feel better the day before they die". My mother was devastated. I think she had literally forgotten that she was dying. When the hospice worker left the room he was also very distressed. He said that he had probably just made the biggest mistake of his career. We were so upset with him, but what could we do. What was done was done. What a gift though, to have one good day where that spector of death was not hanging over her. That was the last day that she spoke. She died a week later.
I wish now in retrospect that we had been better advocates of what we as caregivers needed from hospice and from our doctors, and of what we wanted from them. Even though my mother did eventually pass away I never did believe that we should give up hope. I got the feeling that hospice felt like she had to come to terms with her death. That's putting it mildly. I think that my mother did that in her own way but she wasn't a very outspoken person, especially with strangers. I wish that we had sat down with hospice and with our doctors before she died and just had a conversation about these issues. My grandmother also passed away last year from Ovarian cancer. The hospice in her area was amazing. They were at our doorstep every day. In this case we had asked them not to use the word hospice in her presence. My Grandmother was a fighter and there was no way she was going to admit defeat. Most of the nurses were very good about our request. I guess that is one thing to be aware of. Be vocal about your needs, wants, and beliefs. One nurse did come into my Grandmother's room and insisted on talking to her about dying. My Grandmother was a feisty woman and she really let her have it. I wish that that nurse had respected our wishes because in the end my Grandmother knew she was very ill. But she wanted to mantain that never give up attitude and I believe that it helped her deal with the circumstances. I wish that we had been more vocal with the hospice care nurse for my Mom. That will always bother me.
When my mother died we had no idea what to expect. We didn't know whether she was in terrible pain. I now know, after talking with people that hospice should have talked with us about what was going to happen so that we were more prepared. With my Grandmother it felt like they were there supporting us every step. It wasn't that way with my Mom. My mother wasted away. She went from 180lbs to 85 lbs. It was very hard to watch. Apparently there are things that happen before a person dies which happen similarly in most people. Especially in people who are not eating. I would advise you to ask whoever is treating your dad what to expect so that you will have that peace of mind (if there is such a thing) when it does happen. And if they are not helping you enough then I would advise being a pain until you get the help you need. That is one thing that has haunted my father and my family. We don't know if we did everything we could to make Mom comfortable at the end. I wish that we had been a squeeky wheel because in the end we just felt so helpless.
I know that this is truly the most heartbreaking time. I pray that your Dad will get a miracle. I know the pain that you are going through. It is a cold and horrible disease. My Mom was only 57. Too young to be gone. My Grandmother was 86 - if it weren't for the cancer she probably would have lived well into her 90's. That's the irony of it all. Both my Mom and my Grandmother were very healthy people who just happened to have cancer. It's devastating.
Jessie