Tonight's picture was taken on August 9, 2009. This was four days after we learned that Mattie's cancer diagnosis was terminal. Mattie's child life specialist, Linda, arranged for this special gift. Mattie and his friend, Abbie, got to go into the Lego store in the mall after hours. When no other customers were there, to work with two Lego master builders. Yes this is actually a title, look it up. That night they asked Mattie if he wanted to pick a kit in the store to build together. He couldn't pick one! Why? Because that year we built everything they had on the shelf, either at home or in the hospital. So they then asked Mattie what he wanted to build from his imagination. His response.... a NYC taxi cab. Most likely because of his experience going to NYC for experimental treatment. To this day, the yellow taxi Mattie constructed is in my office!
Quote of the day: What I found most helpful when taking care of Nanny was remembering that while she would yell at us or be hurt that we could not stay with her forever, it wasn’t her real self reacting. We try to remember that Alzheimer’s disease takes people’s lives away and the unfamiliar person we see is just as unfamiliar to them. Until we find a cure, our family will fight for Nanny because underneath the shell of memory-loss, the confusion, and the sadness, there is a person with a heart that will always remember. ~ Erin Bryant, a granddaughter of a woman in the middle-stages of Alzheimer’s disease when she was living in an Assisted Living Residence, 2006
It was another full morning. Literally I did one task after the other, after the other for a good four and half hours. After my dad wolfed down his breakfast, I moved on to do cognitive games with him. In the midst of trying to play a logic game with him, my mom came to the table and presented me with a credit card issue. I told her that I couldn't address it right there and then because I was in the middle of working with my dad. Well one thing led to another and in typical fashion she wanted it addressed at that moment and we got into an argument. I have to admit I am tired and balancing a ton, so if you pepper me continuously I am going to snap. As a reaction to my snapping, my mom told me to shut up.
With that I told Peter that he had to come to the kitchen because I was going out. I literally jumped in the car and went to the farmer's market by myself. I am rarely by myself without someone in tow. I have gotten to know two of the farmer's at the market, so it was nice to chat with them and support their work.
When I got home I cooled down enough to pick up where I left off and got all the issues resolved, market stuff put away and three loads of their laundry done. However, Peter also gets upset with me because he doesn't understand why I can't accept my parent's decline and therefore adjust my behavior to support them, rather than challenge them at times. Using a rational lens, I get and appreciate what Peter is saying, but from an emotional standpoint, it is hard when balancing all the intense caregiving. I would like to be given just a bit of slack as I feel like I am doing the best I can and the average person would have caved in a long time ago.
But what Peter said, I did take to heart. Because when I am frazzled and snapping the whole cookie crumbles here. I am the glue of the equation and if I manage my mom's crises and demands better, then there will be less screaming, tension, and overall angst here. Or at least that is the hope. But it is tiring to be patient, calm, and deal with the same problems day in and out.
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