I am not really positive on how much about Parkinson’s I want to know. Maybe for me to cope and handle daily issues as they come is better for me.
Today, when I went to the doctor with Al, the doctor was supposed to talk to me about the swallow test. He did check Al with his fingers, probing around the muscles of his throat, and said to me that this was another part of Parkinson’s. He could feel some flex in the throat muscles and he wanted to ask me a question, and then looked at Al.
I am sorry, that I am adding this after the fact that I blogged about it earlier, the doctor visit, but I could not write about this at the time, as it was too sensitive for me at the moment.
I asked Al if he had to use the restroom, and of course he said yes. After Al left the room, the doctor tells me that he has noticed some weakness in the throat area, but am I willing to have a tube feeder placed in Al yet.
I know what tube feeders are. They are used to help feed the body. They also make it nearly impossible to have any kind of normal life. It didn’t take me two seconds to answer the question, no. He explained to me that if the test came back positive, it would change both of our lives, because knowing the tube feeder was in the near future, from the test, and then he closed off the sentence with no ending.
For me it is a whole other chapter, a can of worms to be opened. I am not ready to deal with this yet. There are other alternatives. I don’t want to see Al’s life become useless, alive, lying in a bed, or sitting in a wheelchair, going nowhere. I can’t do it!
Now I understand that the test was not performed, and that even if it was, there was no result as of now for the test.
We talked about a product called thicket, and the doctor thought this was a good alternative for now, so Al and I stopped and picked some up on our way home. I will use it in his beverages, and it will thicken up as much as I allow it to, making it easier for him to swallow. Even as the illness progresses, you can make the drinks so thick, they can be eaten with a spoon.
For me, this is the way to go. It puts the test on hold, and allows it to slip from my mind hopefully within the next couple of days. Time is what I am borrowing, and I will borrow all that I can.
You may be asking, why don’t you just place him. I can’t, not yet. As I said earlier today I cared for others also. Do you know what it is like to give your own father a complete bath? Or to spoon feed him because he is too weak to raise his hand to his mouth? To wipe a way the tears because he is telling you at this moment he is scared he is dying? To sit one day a week for eight hours, and the two of you glance out through the windows, watching cars pass by, and then glance at each other, both realizing this blood transfusion is what is keeping him alive? To wipe your fathers bottom after he potties because he can no longer do it?
For the first time I am getting it out of me. Talking about it. The terrible pains I went through for love. I divorced easier than watching my father die. I sat for hours on the porch swing with him, in the summer, him all bundled up in a blanket, and me in a tank top, shorts and barefoot, and I made the swing go because he was too weak to make his feet work. Many times I used a feather bed from a double bed and padded a recliner, set my father in it, and placed pillows under his arms, and legs, and behind his neck, because he couldn’t take the pain of anything touching him. For the last three months, I could no longer hug or kiss my father, as he couldn’t bear the feeling of something touching him.
I took him to every doctor appointment. I talked to insurance companies on a regular basis, fighting for my dad’s rights, while the companies thought nothing of him and only thinking of money they wanted to hang on to. I checked his sugars several times a day, and gave him insulin shots three times a day, as the Prednisone, made his sugars go into the 800-900 ranges. I watched him continually lose weight, and I read the Bible to him. We prayed together, and we cried together. No one came, but maybe twice during this whole time he was ill. I think they were afraid to see him like this.
Now, I am reliving my father all over again, through my brother. I don’t have the responsibilities yet of what I had to do for my dad, but I do know, that while we were eating our supper tonight at Pizza Hut, he pottied all over himself, and this is a sign to me that things will get worse.
I took care of my dad until he died in my arms. I don’t know if I will be able to care for Al this long or not. When my love is strong and the compassion I have for life and people are even stronger, I feel I can do anything. I will watch over Al and do for him as I did for our father, and when our time is up, I will let him go.
Who I am 