Hopefully I will be able to meet Mike's hospice nurse on Thursday. The nurse we signed up with had been rotated off Mike's case and we got a new nurse about 2 weeks ago. Unfortunately, because I work, I have not met her. Mike aide has to do "in service" (they go to their agency and sit through a presentation in order for them to keep working) on Thursday, so I will be home to meet her. At that time I will be asking her about Mike's "gurgling". We have been dealing with this for the last year or so, but it seems to be getting worse. It's always after he eats and it takes us a while of moving him, pounding his back etc to get him to cough it up. I can almost say with certainty, that it has to do with his swallowing ability. What I don't understand is why this has been happening for so long.
I recently read a list of "things to look for near the end" and amazingly, Mike has been dealing with quite a few of them for almost a year. The gurgling, the drooling, the cold hands and feet, the contractured arms and legs, being non-verbal , immobile and dropped jaw when he sleeps. His eating has slowed down also and he has lost weight. Mike has never followed the rules, and this gets me quite nervous at times. So WHAT DO WE LOOK FOR? Since Mike has experienced all of the "signs" for so long now, what do I have to guide me?
I would NEVER want Mike to suffer, and I just want to make sure that we are not pushing him too much.