As far as his health goes, he is unable to do anything for himself. When I lift him, it's very difficult because he is so stiff. He cannot walk, stand, or feed himself anymore. His speech is so very limited, though he can get out, "NO." Although sometimes he says no for yes. This disease is very odd, because if I give Daddy a word to say like, "Daddy, do you want Coke or tea?" He can repeat back, "Tea." But for him to come up with the words on his own...it rarely happens. I think this is the most frustrating part of the disease for him. As I have stated before, if we don't understand him on the third attempt, he just gives up and says, "Don't know." He has a horrific bed sore on his left heel. This is the only side he can still move and from dragging it up and down, it's caused an extensive wound. When we dress it he gets very agitated and repeats over and over, "Oh me, oh me." I hate to hear him say that when we are working on his foot. Daddy has lost a tremendous amount of weight and his legs are so thin. Moma is trying to feed him well, but it's going to take a lot to get some "meat on his bones" as she puts it.
Moma is happy to have him home, though at times she feels guilty because we have so many people coming in to help her out. It's funny because I think she is the epitome of "in sickness and in health". What great lessons I've learned from her over the past months. She has tirelessly given of herself to Daddy. She would go to his room every day for at least 8 hours and rise to his every need. Now, she is constantly making sure he is comfortable, fed well and of course, loved well. I admire her and wished she could see things through my eyes, because although I admire her for what she does every day for Daddy, I'm also very worried about her. I know what caregiving can do to a person. She looks tired and I can tell these past few months have taken a toll on her.
Daddy has his days where he is very quiet and unresponsive. We believe these are the days when he is thinking. He was very quiet after his first visits with the hospice nurse. She asked him many questions that have to be asked, but are difficult to handle. "If you stop breathing, do you want them to resuscitate? Do you want a feeding tube should your swallowing become too difficult?" All necessary questions on any healthcare standpoint, but it makes me think too. I know he would not want to be this way. Anyone who knows my Daddy knows what kind of man he was and this is not how he wants to live. The good and bad part is Daddy still has his mind, so he is aware of what is happening, just not able to do anything about it. He's trapped inside a body that can't do anything he wants it to do. This is not quality of life. This for him is a living hell.