Right now, we are trying to manage what we think is pain. Whether it is pain from her hand, pain from sitting in a wheelchair for so long or pain else where?! She can't really tell you where the pain is. So, it is trial and error to see what helps. The pain seems to bring agitation. If it is not pain, it is just agitation that comes with this awful disease.
There are times when I sit there looking at her and think, you don't deserve this. The staff is so wonderful, but I know she must get tired of them having to do everything for her. I thank God that she isn't fully aware of what is going on because how embarrassed she would be. They treat her with dignity, but you are not supposed to wear diapers when you are not a baby. I think deep down, she knows. She knows this isn't how she is supposed to be. But she is stuck.
The memories of how she used to be are fading. How do I hold onto them? I need to write them down. Sometimes, I can close my eyes and see our old house, see her when she was healthy and whole. It seems like another life. I want to hold onto those memories, but they feel like they are slipping from me. Soon they will be all I have left. I wish for just a few minutes I could look at her and see how she used to be. Maybe just a glimmer in her eyes. This is not how life was to be. I was supposed to have her longer. She was my friend and my mom. She was my example of an amazing faith. I want her back so bad. I want her back here on earth and not have to wait until Heaven.
I do find myself praying that God takes her before she gets really bad. I don't want to watch her go through the last stages of this awful disease. I don't want to see her when she just lays in bed. Maybe God is getting me ready as I watch her progress. Maybe all this pain I feel, is Him getting me ready and getting me to the point, when I say okay You can have her. Not that He needs my permission. But maybe He is just giving me time to get there. Of course, I don't think I will fully get there. A part of me will always want her here.
