Tuesday, March 02, 2010

And yet more snippets

Structuring my life
While it's true that I work full time, my "chores" for H actually structure my life more than work. Work is completely flex-time, but I have to feed H. Twice a day...breakfast and dinner. And the occasional sandwich in the fridge that I leave him for lunch. Not to mention all the times that he asks me for help. What will I do without this demand?

Feeling the emptiness
Sometimes, I'll be walking down the hallway in the house or making dinner and I get hit with the thought: "someday, H won't be here anymore." And I can feel the emptiness, I feel the sadness, and I wonder what it will be like without H punctuating my life with his health issues and care needs as he has these past 15 years or so.

In many ways, H is an anchor for me and I mean this in both positive and negative sense. While I yearn for my freedom from being a caregiver, I also know that this role defines both me and my relationship with H. When he is gone, what will I do without the constraints, not to mention the company?

Where it is going
In spite of the day-to-day ups and downs (which drive me to distraction), there is little doubt that the general direction is down. Now, we won't know what H's viral load is doing for a few more weeks, but it's striking just how impaired he is cognitively and how weak/tired he is all the time.

Last night, he closed his eyes at the dinner table and just sat there for about 5 minutes...then he went back to eating. I asked him if he knew that he was asleep; he said, "I wasn't asleep, I was daydreaming." "What were you dreaming about?," I asked. H says, "I don't remember."

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