Mom only had Hospice for about three weeks before she passed away, and she only had the feeding tube twelve days. Her progression of ALS was very fast. She was diagnosed in September(ish) and died in March. Her death was very unexpected. My dad said, "Elaine was happy until the day she died. We thought she was going to last a long, long time. She started feeling a lot better with the feeding tube. She went down so fast; we did not have a clue. We were planning on things months down the road." He also stressed you should not put something off whether it be discussions, decisions, or major things. Don’t put faith in the doctor’s time frame. They just don’t know. God is the only one who truly knows.
Mom did not use a BiPap machine. She could communicate until the day she died. I had to put my ear to her mouth the day she died and still could not understand her. As she struggled to breathe, she wanted us to sit her up and hang her feet over the bed while she leaned forward. For some reason this helped her?
Her Sunday school class came over to sing and pray for her the day she died. She was struggling to breathe that day, and they asked her if they should just pray and she "said" yes. She started lifting her eyebrows to answer "yes." They gathered around and held hands as they prayed. I was kneeling down beside her bed, and she gave me the look that she needed help to breathe, so I leaned her forward. They left and I asked Mom if she wanted some Morphine to help her, and she lifted her eyebrows.
I wanted to go get something to eat and come right back and Mom did not want me to leave. Dad was there and told her I needed a break. She lifted her eyebrows. He gave her the Morphine, and I was only gone fifteen minutes. When I came back she was asleep.
My dad took my kids to the fair in town that afternoon. While they were gone and Mom was asleep, I was sitting by her side when I heard a gurgling noise coming from her and knew she was taking her last breath. I knew her Five Wishes and knew she was DNR. Just that morning Dad told me not to call 911 if she passed away but to call Hospice. She never woke up and passed away in her sleep. It was difficult for me to go through, but I actually smiled because I knew she had asked Jesus into her heart as her personal Lord and Savior, so I knew she was in Heaven.
You are doing well to seek out things ahead of time. There is so much to learn even concerning children and how to handle tough situations. We had to decide if we wanted to let the kids see her when they got home after she passed away. My daughter was 11 and my son was 7. When I asked them, they both wanted to see her. My son sat in a chair and poured his heart out to her. Also, the primary caregiver needs to make sure whoever is watching them while they are gone knows how to use the equipment, what it is used for, about their meds, their Five Wishes etc. If you want to read what I learned you can go to my thread "a blanket of snow." I wrote down a journal and ask important questions to help you learn through "our journey" of ALS. The threads are the older ones though. Right now I am posting other deaths I have been through after she passed away.
The last thing I can say is I would do it all over again to have her here with me. The road is tough and exhausting. Enjoy each day and moment you have with her
You are doing a great job of thinking ahead! The little details also make it a lot smoother. Blessings! ~ Judy
