He was seated at the dinner table waiting on his food. Well, he was not waiting nor did he have any visible awareness of his surroundings nor existence. I kissed him on the head and sat next to him. He was leaning over so far due to his atrophy that kissing him on his lips is no longer a viable idea. The top of his head will have to do.
His eyes were open. When his juice and water came, I fed it to him with a spoon. The consistency is that of jello. He "drank" most of it. What did not go in his mouth landed on his bib. The angle created by his spinal atrophy makes it difficult to get anything in his mouth.
The food came and I struggled through dinner.
He ate willingly as I fed him with a fork. He still chews and swallows. His eyes water constantly. I read somewhere that tearing can be caused by slight aspiration. There were no signs of that today....just the tearing.
As I looked around the room, I looked for familiar faces. Of the 24 patients on the unit, very few are the original residents there when Gary moved in to the unit. Most were either moved or have died. As I sat there watching the varying levels of decline, I felt a remarked heaviness. I look at Gary differently now. I no longer feel "lovey-dovey love" rather a "I feel sorry for him love".
My husband is gone in every way but physical. I hope he goes soon. I have accepted it. My sadness now is not so much for our departed relationship but that the disease takes away all life. It is so unfair. I left him with another kiss on the head and told him that I would see him after Christmas. Maybe....
Today, I spoke to a nursing class at my University about the importance of Advanced Directives. I am morphing away from the caregiver role but hopefully I can draw on my years of experience to assist others in some way. I was able to talk about Gary's illness, the deaths of my father and sister without any drama or emotion.
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