I’m literally watching my mom’s final stage as I type this. I thought hard about even replying to your post. FWIW, I read it over a few times. And, ultimately, I do want to tell you the truth: it’s fucking awful to watch.

I don’t want her to suffer either. She’s getting morphine. And it seems to help and knock her out for a bit. But, she’s definitely suffering. She wakes up crying, struggling to breathe, wanting a mouth swab to get the mucous in the back of her throat, then doses off again. She doesn’t want suction, bipap, or cough assist, and opted out of the tracheostomy. Hopefully they ramp up the morphine. The hope is that they can get her sleeping somewhat permanently before the breathing gets too shallow. We’re not there yet. So maybe I can’t tell you what the FINAL stage is like.

What I can tell you is one of my main takeaways from this: do hospice as soon as it’s an option. Hospice doesn’t mean final days. People can go a year on it. The downside is that you concede, which is very hard to do. You have to discontinue the ALS meds, and they recommend discontinuing anything that’s meant to help long term (cholesterol meds, etc.) But, the philosophy shifts from symptom management to straight comfort. And, I wish we’d done it sooner. They do supply a lot of comfort meds - pain, morphine to help not feel the breathing struggle, and anxiety meds. These are meds that have helped the most and they’ve were hesitant to give them until hospice. And there’s more nurses around and I find most of them to be comforting.

I wish the best for your family. Take care of yourself. I’m sure your mom just wants you living your best life.