Hi everyone.
Sadly my mom passed away on June 20. She had only been diagnosed with ALS 3 weeks before. The confusion I had mentioned had become quite bad: hallucinations, constant talking, not sleeping. This bad episode lasted from Thursday to Sunday. She was very paranoid, didn't want any men around her including Dad ( which devastated him), talking about Satan. It was just horrendous to see her like that. On Sunday she asked me my name. She had gone back into her childhood also. It was very hard to see her like that. She finally let Dad stay with her on Saturday. And then she seemed to come out of it on Saturday evening. But when we called the hospital on Sunday morning she was right back into it. We only spent about 5 minutes with her before she shooed us out of the room. And when we went into see her on Sunday night, she was so aggitated that we didn't stay. They were giving her resperitol (not sure of spelling) and Haldol and she was still quite aggitated. She hasn't had the use of her legs in over a year, and on Saturday she tried to climb out of the bed. She didn't sleep for over 48 hours and mom always enjoyed her sleep. Finally around 2 on Monday morning they got her settled down. My dad and I went up to the hospital at 7:30 in the morning and she was sleeping so peacefully. We were so relieved that she seemed to come out of the mess she was in. However, around 8:15 her breathing started to change, and finally she passed away at 8:35.
It was a complete shock. We knew the ALS was progressing quite quickly as the doctors feel that she had it for about 6 years. But we thought that we would at least have the summer with her.
As we promised her that there would be no more testing, or intervention of any kind we don't know what happened exactly. But her palliative care and family doctors seem to think that she may of had a brain aneuresym on Thursday or at least something seriously went wrong in the brain.
Everyone says that we have to have some peace about her death, as she didn't suffer the terrible ravages of the disease. She was still able to swallow without too much difficulty and still able to feed herself. She was supposed to come home the day after she died. The bed and lift had been set up by ALS Halifax, and she had been zooming around the hospital corridor in her new power chair the week before.
But it is still difficult. She was a smart, vibrant lady who taught grade primary for over 45 years. The mental state she was in is very hard for me to deal with. Some of the things she said and the way she acted was just not my mom.
Dad keeps telling my brother and I that we have to be thankful that she did go so peacefully in her sleep. I keep telling myself that but it still doesn't make things easier.
Anyway, thanks for taking the time to read this. I'm sorry it's so long, but I needed to get it out. I hope to take part in the walk for ALS in Sept.
I was wondering if the ALS society has those bracelets that people wear for awareness. (the ones like Lance Armstrong has). I would love to have one to wear.
Take care everyone and god bless.
Susan