I am sorry you are going through all this. It is an amazing question to pose.. what do people do? I too have wondered.
I tried to bring it up to my husband...but through our whole journey with ALS we were in denial. He had also tested positive for Lyme disease and did seem to get better for a short period while being treated with antibiotics. We held onto the Lyme DX as long as possible.. and I think that hope gave us a whole extra year.. to be honest.
when I did bring up your question he looked directly at me and said, "Don't ever ask me something like that again." So I did not. I had to plan everything on my own. We are originally from Ohio, so I decided that is where he (we) should be buried. Yes.. I was urged to get a double plot and headstone (even though I was only 39 years old). I am Catholic and was thankful for the little planner on funerals with reading choices etc. I picked out ones that spoke to me and selected hymns that I knew he liked.. and ones my kids and I appreciated. WHen planning this "stuff" it is the end of what we know here.. but depending on your beliefs, the beginning of a new and beautiful life...although my faith told me that at the time, it certainly did not feel like it. Also.. there can be major "distractions" during the very end time. Everyone has different coping mechanisms.. different ways that they express themselves.. For myself and my girls, (aged 8 and 15).. I found it very important to maintain the dignity and peace and keep really harsh and over bearing people away. ESPECIALLY people who wanted me to look on the bright side.. and rush me through the process. It has been over 4 years.. and I am still processing it all. I could never even write on here before. I did everything alone.. and it was very hard, but my husband would not admit he had it, so I supported him in that decision.. because it is what enabled him to go forward as long as he did.
It depends on the timing of things.. and I think if someone asked me.. I hope I could be brave and tell them if I liked a certain song.. or reading.. or if I did not want Uncle John to talk about me at the service. I firmly believe that it should be a celebration of life and of love.. and a tribute to the person and the family that loved him/her so much. I will be praying for you and the upcoming months ahead.