Sunday, April 15, 2012

Question Marks

Since I said April was going to focus on accepting Alzheimer's through ignoring it. I have realized how hard it is to be a care partner. In fact I will admit I have been living in Bed, Bath and Deny and still am reluctant to say in my heart that I am struggling with this illness. I am not complaining, I do not want to sound like a victim. Please understand that I always thought Self Esteem was something to do with ironing, so I approach everything from a level of others know better.
These are just facts that I want to share to highlight A Day in the Life of a Question Mark.
Examples:
  • For anyone who saw an odd couple in Big Job Lots (terrible name) on Saturday that was us. I am the Walter Matthau character. We had agony over buying a blue plant pot for the garden. It will break. Its the wrong color. What's it for? It's too heavy. At one point I looked at rope and said out loud "Wonder if that would hold me?" I was joking - honest Rachel, I was! 
  • Anxiety over me making dinner while "You've Got Mail" was on the TV.
  • Tears and nearly a panic attack over the TV mini series of Titanic. When was it going to start? Why would we watch it? What if we missed it? When it did start, he talked solidly throughout it. Apart from when the over loud commercials came on, which made him cry because he thought he had broken the TV. We gave up watching, though I think I guessed the end. It sinks right?
  • Today we were up at 6am to get dressed for the day in a suit, when we are doing nothing.
  • Panic now because I went to the bathroom and couldn't be found for a minute, despite me leaving the door open and shouting as to where I was! It is fortunate for the neighbors that I suffer with constipation.
Now, just for one moment, let's think of David going through all of these concerns, often captured in a replaying loop. I ask constantly how may I help? I say all the time Everything Is Safe. I have mastered a smile, a level of volume, a speed close enough to stop. My point is, I can do all of these things while David cannot because he has lost memory of control. I have noticed that his taste has changed and his sense of touch. There is no difference between hot or cold water. He will pat the sofa constantly thinking its me. Mind you - size and comfy padding, we are pretty similar.

I wrote to my friend today and said nothing much is going on and yet with Alzheimer's there is ALWAYS something going on. There are no easy choices, no quiet days. I must find a deeper solution than practical to this, as I feel its eating us both alive. There are smiles to be shared, I know there are. I just have to understand where I can find them within all that fear and the popping, hungry, demanding, debilitating question marks.

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