I really don't know who else to turn to, but my Dad has had 3 rounds of antibiotics and is now getting them through an IV for pneumonia that won't go away but the IV antibiotics seem to be helping somewhat but he won't be off them until early next week. My sadness -- my nephew is getting married next week Dad's only grandson and Dad would have been able to go to the wedding when it was planned. Unfortunately, we did not know how fast his disease would progress -- he cannot talk, walk, eat, is incontinent, and has horrible choking spells where he loses consciousness and turns purple everyday.
He is in a wonderful facility and Mom and brother go everyday (i live in TX they are in MA). Today one of the Aides called Mom and said Dad had indicated he wanted his "sports coat" for a wedding. My Mom and Brother along with Dad's primary RN had go in today and tell Dad he is too sick to go to the wedding (it is a 2 hour drive one way). Dad screamed NO NO and then the tears. I've talked to him on the phone and although he can't communicate well his breathing and sounds he made were so sad. It just broke my heart. If there were any way we could get him there we would -- but the hospital says there is no way. His Dr. will be in tomorrow to tell him he is not medically able to attend the wedding.
I'm not sure the reason I'm posting but my heart is breaking and I really have no where else to turn. All my family members feel so sad about this situation. My nephew and his new wife will come down the day after the wedding to see Dad before they go on their honeymoon but that didn't cheer him up any.
I guess I'm just so sad and my heart feels as though it is breaking. This disease just keeps getting worse. When I think we've gone through the worst something like this happens. Just needed to get this out to someone - to people who know the pain involved in this dreadful disease. Please keep us in your prayers. This group is a lifesaver and to those of you on this board who have PSP know that I pray for you everyday.