Very sorry to hear what you and your Family are going through. Feel free to get any and all things off your mind.Originally Posted by amd013
Sigh, I am on such an emotional roller coaster. About 2 weeks ago my dad developed a Kennedy terminal Ulcer, which is usually a sign of the dying process. Many people pass within 72 hours. Last Thursday Hospice determine it was time to call in the family for end of life, so I flew in from Austin to Lexington, and one of my sisters drove from Cleveland. We stayed at my other sister's house in Cleveland for several days. When we visited my Dad he started to "raly". He would ask for food or drink occasionally, although if you combined everything he ate in day, it would be less then a third of a single meal. He is so weak, most of the time you have to put your ear a few inches from his mouth to hear.
Since he started to become more alert and started "eating", hospice decided to upgrade him on Tuesday afternoon. On Wednesday we were unable to visit him anymore because he was no longer considered "end of life". This upset us, because if we had been told this the night before when we left him for the night, we might have said different things. We can only hope he doesn't think we have abondonded him.
My sister from Cleveland decided to go home yesterday so she could get some work done, and I decided to go with her. (partially motived by the fact my brother-in-law in Lex, is a self-absorbed douche).
So guess what, now, less then 24hours after we left he has been downgraded again. I knew this would happen. As long as we are staying in the room giving him food and drink when he asks he will be "stable". But the nurses/aids only come to his room once ever 2 hours or so to turn him. Usually he is asleep at this time. It can take him 5 to 10 minutes after waking before he really becomes alert enough to communicate. Since he as very advanced Parkinsons it is hard to hear him speak, and it is hard for him to get the words he wants to say out. Also, he is past the point were he could press the call button for aid.
So I am in limbo, I know if we visit him it will extend his life for who knows how long, and I am afraid it is going to be a yo-yo for the next several weeks. It is so hard wishing he would pass, but he has no quality of life and no hope of it ever getting better. I think he is getting ready to pass. He keeps asking when we have to go to the airport to visit his brother (his brother "lives" less then 3 hour drive away). My Uncle is also on death's bed. He had a brain bleed about a year ago, and really thought he would pass a long time ago, and he has stated he wishes he was dead. So maybe my Dad and his brother are somehow spiriitualy trying to sync their deaths?
My Sisters and I all want him to know it is ok to leave and go see our mom.
Sorry for rambling. Have so much more to get off my mind but I've burdened you all enough.
Sending positive thoughts and prayers.
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