It has happened again. Another fall. Another trip to the Emergency Room, for Stanley, my husband, to get stitched up. He really looks terrible! I'm embarrassed to take him out in public because people stare or make comments about "what happened".
This happened two days ago. I have been scared to let Stanley out of my sight, for fear he will fall and will be unable to get up. I just wish our children were closer ... then it would be so much easier for the two of us!
Stanley has super progressive nuclear palsy (PSP), which is a newer neurological condition that is a cousin to the more familiar Parkinson's disease. A lot of the symptoms are very similar to Parkinson's, but the progressiveness of the disorder is a lot more rapid; people who have this disease usually die 5-7 years after initial onset and diagnosis. It is a terrible thing to have to witness because your loved one is geting worse, and there is really nothing you can do to stop it or help him (or her).
Stanley is unable to hold his head upright upon standing or walking, and he is unable to move his eyes up and down. This is part of the problem that causes him to lose his balance. In addition to this, he chokes upon eating, and he's already ended up in the hospital several times due to pneumonia. The last time he was in, it was so bad, it's a miracle we didn't end up losing him. (During his week-long stay, he suffered a cardiac arrest; it took all the wits of the medical personnel to bring him back.)
Right now, Dr. Tanner is thinking of having him undergo an operatiion where a stomach tube (called a gastromony, or G-tube) can be placed; it is just becoming too risky for Stanley to eat without the risk of him choking.
I just wish people can understand what I am going through. It breaks my heart when we run into friends because they can clearly see that something is wrong with Stanley, and some of them have shied away, fearful that they might "catch" what my husband has. Or they think he is going to get better when, if anything, he is only going to get worse.
Eventually, I am going to have to discuss the option of having Stanley placed in a nursing facility with the children because it is getting harder for me to manage him here at home. I don't want to do this to my husband, but I am beginning to see that I have no other choice.
This might be the last good Christmas and Thanksgiving that we will have as a family. Happily, the children are going to try to come home, but things haven't been wriitten in stone just yet. I just hope that they can cope with the changes in their father because it is hard for me to accept even now. I still see Stanley as the family jokester and "ladie's man" that attracted me to him over forty years ago; the man that is before me now is like living with a complete stranger; it's not my Stanley!
*to be continued.*