u/drotter18

Thank you all for the advice and help through the journey of caring for my father. Early symptoms showed up spring of 2022. He was diagnosed in 2023. And he passed in 2026. He was unwilling to be at peace and defied the disease right up until the very end. Nurses told us he would pass “today” and they said that for 4 days. As always my dad did things on his terms, and passing wasn’t different.

I’m grateful to all in this community who offered assistance when we needed answers.

For 3 years I’ve always known what the end would be. It was never going to be different. But knowing that early on hurt a lot. But eventually it became a blessing to enjoy the moments that we could.

My father has had ALS and is now in the final stages. I believe he rallied yesterday as people visited to say goodbye as he responded with yes and no nods to questions.

However my question is about this final decline.

At what point is he no longer there? He’s been doing that breathing pattern with 20 sec ish pauses. And I’m just curious if my dad is “there?”

Or is it just the final process of the last vestiges of the brain holding on but he’s not listening because he isn’t there. Meaning the main part of his brain has been oxygen starved to the point its functionality is basically gone.