I know how you feel. I understand your need to know what is coming next. Less than two years ago I came here and asked the same questions. Thankfully I got straight forward, honest answers from someone who had just gone through the final stages with a PALS.
I wish those posts from October of 2006 were still accessible. Perhaps they are and I just don't know how to get to them. I posted just yesterday asking where they are.
If I find them I will certainly let you know.
In the meantime, I'll tell you what I know from my experience. Remember that each person experience with this disease is unique.
It sounds like your dad has progressed really fast - 5-1/2 months from diagnosed to his present condition which, based upon your description, sounds near the end of the road unless he gets help for his breathing issues. Does he choke when he eats? Where is he at with his lung function %? Does he have headaches in the mornings? Can he hold his head up? Can he still speak?
This web address;
http://www.hospicenet.org/html/preparing_for.html was a huge help for me as I got prepared to handle the final stages with my friend. I found that if I had already prepared myself with the information of what was to come I was better able to
help Linda when she got scared. I was still scared but at least I had freaked out alone and gotten over it by the time she needed me to be calm and help her know that I was prepared and willing to help her.
Basically it went like this; her neck became more and more unstable and her head would fall back or forward if it was not supported when we transferred her. Excess siliva increased significantly the last month and she required constant wiping of her mouth and then the last weeks, suctioning. She became extra tired and didn't want to do much (this was unusual for her) and she began to have bad headaches in the morning. Her speech went from not good to horrible in a matter of days. As soon as she felt the first little bit of "air hunger" we began giving her the Ativan (sp?) and
morphine. These are part of the "comfort meds" provided by hospice. The hospice nurse had done a great job of preparing me to know when, how and how much to give.
Family and friends gathered around Linda's bed those last three days and she was actually the most comfortable I'd seen her for the past couple of weeks. Honest to God
she was peaceful, able to speak a little better and no longer needing constant suctioning. She was able to visit, dictate letters to her mom and sister, laugh, cry and
express her thanks to all gathered around for their support. The night before she died,
as 18 of her closest family & friends were gathered around her bed praying and singing her favorite praise & worship songs, she looked at us all, smiled a beautiful crooked ALS smile and said, "This is beautiful. I hope it's like this for each of you." She felt loved and cared for in her final days and hours, was comfortable - or might I better say - not in pain, and not afraid. She knew, because of her decision years ago to accept Jesus Christ as her savior, that she'd be carried accross the threshold of Heaven in His arms
and one day be reunited with all of us gathered around her that day. When she passed the next day many of the same people were with her around her bed again
rubbing her feet, singing to her, and supporting her husband, son and daughter as
she peacefully slipped away. I was at her head wiping her brow most of the last two hours of her life and I promise you it was not the awful experience I expected it to be.
Sad for sure but also very comforting to know that she was not suffering pain or fear.
She closed her eyes and slowly her breathing became slower and slower until she simply stopped breathing altogether. It was so peaceful I needed to listen to her chest to know that she was gone.
I know this was only possible because of the comfort meds hospice provided and her
faith in Jesus which gave her peace about her future.
Linda died 4-12 years after diagnosed. She was 47.
I hope this helps you.
Jeanne