Hello Kim, I'm so sorry for your loss. One of my friend lost his uncle exactly the same way. I remember that he was feeling so guilty to be able to speak when his uncle was barely able to speak. Furthermore it was hard for him to realize that he only had a few days to be with him, whereas a month before everything was fine.
As this situation is hard for the patient, because he's the one suffering from the disease, it is also hard for the family or friends that have to see it. This is a fact that is unfortunately often forgotten. I believe that new technologies would be able to help patients in needs to communicate with their families in theirs last days. The technology that helps Stephen Hawking to communicate is a good example of that, and it's really smart of you to suggest this in this case.