For me once we were told our daughter was in final stage we had conversations going forward about her wishes. She did not write everything down such as cremation vs etc. Which though in a way I wish she would have cause you second guess your memory of the conversation. She did write down what where she wanted her sons 5th bday party. And she did make sure everyone knew she wanted a beer pong tournament her brother and their friends in her honor which occurred at my house. Also because she did not really make a decision about organ donation that night in a hotel I had a representative keep calling me and then spent 30-40 mins on phone answering questions. I can say at points my mind turned to goo so my feeling is write every detail down, that way when the survivor hits a brain freeze from all questions they can just pull out the list. It may also help in case some family member wants to re arrange things, all the survivor has to do is hold up the paper with the handwritten instructions. For my daughter her feeling was she lived her life as she pleased making her rules, CF was an inconvenience something she had to work around so death was to be no different it would be on her terms. I can say once she gave them the go ahead she was at peace, even the week before I think she knew she was calm and at peace with everything. She even told folks if they wanted to come and be apart of the end no sobbing in her presence she was not afraid. I think the family sensed her peace and took the strength from her and even though it was hard it was a beautiful end to a wonderful life. My son who will be 30 and has CF has also started discussing,he wants calling hours to be 30 mins and people just run through and high five no hugging and sobbing. I told him our local funeral director already thinks our family is nuts but I can not guarantee it won't be a little more traditional. I hope this helps you in some way Tammy
