My mother has been in and out of hospice for over a year. She is in AL. She has been wheelchair bound and on oxygen during that time but at least has been able to be bathed and taken to get her hair done. When I've visited she has been sitting in her recliner chair and lucid enough to hold a conversation. During the past month when I've visited I've noticed her sound asleep in her chair and just didn't have the heart to wake her. I know she has wanted to walk and has been miserable being immobile.
Last week she took a very sharp downturn and was struggling to breathe. She is now confined to her bed and is barely lucid. Today she recognized me and my cousin when we first entered her room but after an hour she didn't acknowledge us and would occasionally awaken and call out various names. She said her brother's name (who is still alive) and said a name neither of us were familiar with. She said "I want to go home", "I want to get up" and "get me out of here". She was very nervous and was continually uncomfortable and adjusting the covers. She actually told us, "you know I'm terminally ill". It was heartbreaking to see, especially since she is now on no medication (like morphine) that would cause this behavior. I did ask the nurse to give her something to calm her down.
I'm sure others in this forum have experienced/are experiencing this. I know her final days are near. It is just so hard to see her so uncomfortable. I'm not selfish, and if I need to give her up to remove her pain it's okay. I know others in this forum have said it is unfair to keep someone alive in this state when death is inevitable and I agree.
I’ve also read it’s quite common, but not often discussed as it’s so distressing to families. So no wisdom from me, but solidarity hugs.