Well Jack still has that fighting spirit, it is getting harder he pretty much stays in bed, but he is still can communicate when he is awake, but he is weak, and tired, his breathing his slowing, we do have the nurse but you have to watch them I get some rest maybe 4 hours a night, I was alittle upset the night before with the nurse, Jack is on some pretty strong meds, and I dont want him totally sedated just out of pain and comfortable, and his meds say one of them say every 2 hours when needed and the other was every 4 hours as needed, but the night nurse was just giving him it every two hours no matter what and when we checked on him she was sleeping, and he has not been the same since that night, Im not saying it is because of that but she over medicated him so she can rest, so now the only one who can give him meds is me, and alot of these hospice nurse are not comfortable working with trachea, so I still have to do all of that, and so Im still up alot, and his tumor is draining so bad from his nose and mouth and he needs mouth care every hours, so I get upset if that is all they are doing his helping to the side commode and keeping the draining from running down him and I go in there and his nose is running, I feed him I still do alot they are just monitoring him, I might just be in set in my ways, because I have been doing this on my own a year, but have some compassion, the fluid is so foul and I dont want it sitting in his mouth or running down his face the poor guy has enought going on, and on top of all of this he has not had a bowel movement in 5 days and we have tried everything, and he has a bedsore, that is very uncomfortable and one of the nurese told us that was are last concern I was like um no, just because he is dying he deserves to be comfortable and bedsore are painful, sometimes I wonder about hospice do they try to rush the progess up because I did hear the main nurse on the phone say well he does not have much time and I dont want to send out the best bed we will send out the middle one, now, I think that was just wrong I know if it was her loved one she would want the best, maybe they just get immune to see this and there is no compassion it is just there job dont understand, but as long as Jack is here even if Im doing it all he will have the best care,
Keep us in your prayers Thank you for all your kind words and concerns
Love patty
