Try to understand, or look for que's from the ALS patient. They are still in there, still very real, and loved to be talked to, not "talked about". I loved that our nurse would try to understand, and that her and our nurse aid would try to talk to him first. Obviously at times, I needed to translate, but it meant the world to Jason, for them to try to talk and wait, and be patient, and try to understand him.
Don't talk over a patient or thier spouse, as much as you have had schooling, so has that spouse known thier spouse and what works best for them. Never assume you know more in the situation, and try to make sure you have that spouse (and even the ALS patient, if possible) in on making decisions reguarding thier care.
I loved that our nurse came in and talked to us and acted as if she was family. She was straight up and honest with us and never talked down to us. She always made us feel comfortable and at home in our house with her there, and not like there was a stranger in our house. She was family, yet she was respectful. There is a line, and please look to your patient and thier family for the direction on that line.
When it gets near the end, please, do not talk to the family as if the person who is dying is not in the room. We had an on-call nurse come in (that wasn't his normal nurse) and she started to talk about "him" and "his case" right in his room, as if he was not there, and could not hear. My husband, COULD hear every word, and I did not appreciate this one bit! I escorted her out IMMEDIATELY! She asked if she had time to get her bag, I escorted her out first, as, I did not want her to say one more word in my husabnd's presence. She left and the hospice agency made sure my spouse's nurse was enroute.
Know that when the time comes, many of the family want to do what is best for thier loved one, but sometimes are unsure if they are making the right decisions. Reassurance is key. The day my husband died. He had been in the dying process for already 2.5 days. It made me wonder if I was "doing this to him", if "he could come back from this". I asked a friend, who is an ICU nurse, to come out and give me her opinion. When she saw him, she knew instantly that he would, more then likely, would not make it through the night. She started to cry, and explained that, no, I had done everything possible, that he is dying, and that everything is shutting down, that he just has a very young heart that might take it longer to stop, but that I had done everything possible, reassured me that I had done a good job, he looked good, but yes, he was dying. That reassurance, helped me in ways no one could ever imagine. I was able to think, well, maybe my husband was waiting on us to celebrate Katie's birthday before he went, so we did that, and he opened his eyes for the first time in over a day. Once everyone left, he did that last part like the rest of the journey, and we did that part together, just him and I.
I really appreciated our nurse, who came once he passed. She asked me, how I wanted to handle it, not doing anything without first talking and asking me. She made me feel like I was in the driver's seat, and I made all the decisions. I wanted to give Jason one last bath, and wanted everyone out of there, but her and I. At that point, I only wanted a few choice people to touch my husband. She very reverently helped me give him a bath, and dress him for the funeral home people. Once we did this, she asked if I was ready for her to call them, did I want her to call our Pastor or anyone else, etc. She held me as they got him ready, reassuring me that I was "doing good", and held my hand as they took him out of the house. She stayed for a while after they had took him, and made sure that I was okay before leaving. These were actions, that no money could pay back for the priceless gift she gave me that night in holding my hand as I kissed my sweetheart goodbye.
Hope this helps.