Monday, May 1, 2023

Monday, May 1, 2023

Tonight's picture was taken in May of 2009. Next to Mattie was his best friend from preschool, Zachary. These two were inseparable in school and despite Mattie's illness and compromised state, Zachary never skipped a beat. He was a devoted friend and I learned a lot of about kindness and commitment from watching these two friends. This photo was taken at the Mattie March, an event Mattie's care community planned and hosted for him at his school. The Mattie March set the ground work for the Mattie Miracle Walk that we run each May. You may notice that Mattie was holding a cup. Don't think there was fluid in that cup! Try caterpillars! Mattie would capture several tent moth caterpillars in Alexandria, VA and then bring them to the city so we could take part in the metamorphosis process! The caterpillars were part of our spring ritual. 

Quote of the day: We could never learn to be brave and patient, if there were only joy in the world. ~ Helen Keller

My caregiving role is multi-faceted. It isn't simply a bunch of physical tasks. That would be challenging enough, but there is an emotional layer to this role that is even more wearing than the physical stuff. Here is what today looked like so far for me:

• Got up, showered and dressed.
• Went downstairs, made breakfast for me, my mom, and dad.
• I vacuum the first floor and clean the kitchen (every morning). 
• Then went upstairs to get my dad in the shower, while I made their bed and cleaned my dad's bathroom.
• Once my dad is out of the shower, I dry him off, put lotions and powders on him and get him dressed completely (as he can't do any component of the this process).
• Then I put a gait belt around my dad and help him down the flight of stairs to the first floor.
• I get my dad to the breakfast table and he begins eating. While I start a load of laundry, throw out garbage from upstairs, and make my mom's morning tea. 
• Then I try to eat my breakfast quickly, so that I can help my dad with his morning journal and calendar.
• Right about then, my mom comes down. I help her into her seat and get her situated so she can start breakfast. 
• Today, my dad went to the memory care center. So as soon as he was gone, I prepped chicken for dinner tonight and cooked meats for Sunny. 
• Then did about an hour of Foundation work. 
• Folded and put away the laundry and got my mom moving so I could take her out to lunch. 

This account is just some of my activities from 6:30am until Noon. I will spare you the rest of the day. However, I thought my mom would like to go out to the Neiman Marcus Cafe for lunch. This is a place I can't take my dad, so I made a reservation yesterday for us. My mom wanted to try the salad special on the menu today, so we ordered it. She got about half way through the salad and then told me she hated it. By this point it was impossible to tell our server that my mom wasn't happy with the salad, because when she first checked on us, we told her everything was fine. Also over half of my mom's salad was consumed. 

Needless to say, for the rest of the lunch I heard my mom lament about the salad and then about her life. She hates our weather, doesn't like the fact that I won't let her drive, and she is tired of doing the same thing day in and day out. DON'T I KNOW IT! It takes a lot of patience and inner strength to hear her laments. I understand what she is saying and can appreciate how she must feel, but frankly I am too wrapped up in this at times to be empathetic. I need someone who will listen to me lament. 

Today I was able to absorb what my mom was saying and took a deep breath and tried to validate her feelings. But I also like to stick with reality. The reality, as I told her, is that she can't do anything independently anymore. I would love to put her on a plane and have her visit friends in Los Angeles or friends/family in New York. Unfortunately those days are long gone because my mom needs constant support and supervision. My mom mentioned to her physical therapist that she wanted to go on a cruise. The therapist handled it well, and also stuck to the facts. She basically mentioned to my mom that she is challenged with walking on a flat, stable surface. But on a ship, with constant movement, walking becomes even more difficult. I am not sure if my mom put two and two together, but basically I got the message loud and clear. Not that I needed the 411 on my mom's walking, but it is nice to know that I am not the only one who evaluates her and realizes she needs certain accommodations. 

Each day I wake up and I hope that I am given the strength, energy, and courage to manage the day ahead. This is my status and I take it one day at a time.