Hopefully, if that is important to you an your loved one, you can talk about it at anytime. I would sooner rather than later. It becomes difficult to communicate when the voice starts to go. I wish you all the best. Prayers!
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.
Thank you so much for your reply,I know it was not easy. I had almost decided to take this aspect of things under my control because of the very reasons you stated today. I am not sure if he feels his denial protects himself,me,or the girls. The last few weeks have been in steady decline. A lot of the signs of progression of disease are evident yet,when he spoke with the hospice physician today it was as if we were very stable.
Tomorrow I will begin the process of planning the "celebration of life" to follow the funeral and to enlist trusted friends to help be sounding boards for decisions such as burial plots,and the actual funeral.
Bless you for being so brave. I hope things become easier for you all and will keep you in my prayers. Hanna
Maybe denial is okay. A lot of people think it is not. I know, I myself was on the fence.. on foot on resignation and the other on "we will have a miracle and beat this". It is almost impossible to hold that stance long term.. but I think we did pretty well for 4 years. I remember about a month before he died.. he really seemed to be getting better.. eating more etc...not choking so much, speech a bit improved. we even made the 12 hour car ride back to see his parents...and about 5 days before he died.. things were really bad.. he slept a lot, was not eating or drinking much.. etc. and I remember being upset/mad at him for not trying harder to eat more.. etc... but a little voice inside me told me.. "just love him"... and so that is what I did. I would offer shakes and liquids.. and I just decided that if this were "it" that I was not going to remember myself.. or have my kids remember me berating him. It took a lot of strength to "will calm" and peace. I literally gave it all to God...because I finally had to admit what the limitations of what I could accomplish were.
So.. if you have to make the decisions yourself.. with the help of family and friends.. then that is okay. It is a celebration of his life.. but really funerals are for the living.. so if he does not seem to want to face it.. then perhaps it is an act of mercy on your part to take that burden from him. Maybe it is helpful to remember that love is eternal.