My dad was diagnosed with als three years ago this past march. the past three weeks he has taken a turn for the worse after getting the infamous pneumonia! in just a few days he stopped eating (he had originally opted out of a feeding tube) and we were told to bring the family together.
we were told that it varies how long people can go without eating. well, he went 10 days without barely eating anything (most of which probably went into his lungs anyways). eventually he beat the pneumonia and is eating very little on a daily basis.
my question is...what were your experiences towards the end? i know no one can ever know when it's time, but he's in and out of it all the time with all the drugs he is on, he is very wound up and hardly sleeps. the friends and family that came in from out of town went home because he took a turn for the better.
we are so happy that he is still with us and it just further proves what a strong man he is. But, i'd like to get some perspectives on how the last weeks were and what we may expect. my sister (his daughter) is in kansas and was completely torn apart knowing she had to go back to kansas after being home for two weeks.
any stories? advice?
it's a challenging, heart wrenching time for our family and it's great knowing there are others out there that understand. we have such strong support from so many people, but they only try and understand. i can see in their eyes when i tell them our experiences that they care so much, but at the same time i think to myself, "you just don't have a clue how horrible this disease is". i don't expect them to and hope they never experience it.
hospice has been great, but it all varies so much that they are so cautious in what they say..especially after dad beat all the odds and survived what they thought was the near end!
I know very well what you are going through. My mom died from ALS in October 2005 after a two year battle. Mom was incredibly healthy heading into this terrible disease and it took her pretty quickly. Mom had bulbar als and did have a feeding tube. Big changes seemed to come every three months with her. She lasted 3 months in hospice care. We never thought that would happen. I am truly grateful for that, the care she received there was outstanding.
You never know when things will turn, but mom could always write up until the end. Two days before she died she wrote me a note and told me that God was calling her. I knew then, she was serious. We lost her forever two days later.
Joe you and your family have all my prayers and I hope you have some time to hug him a little bit more before he gives you a sign that it's time.
Please take care and as one child of a parent with ALS to another, I hope you know you did the very best for him that you could.
