Wednesday, August 9, 2023Tonight's picture was taken in August of 2009. At this point in time we knew that Mattie's cancer diagnosis was terminal. We bought him this ride-on vehicle, as this was something he always wanted. Mattie was eager to drive "Speedy Red," but I was nervous about him driving alone. After all, he was attached to a pain pump and tank of oxygen. I wasn't sure if Mattie could grasp the concept of the gas pedal, the brake, and steering. So I was his co-pilot! The car wasn't meant for an adult, so I literally squeezed myself inside. Nonetheless what I can say was that Mattie was a born driver. He had a natural instinct for the mechanics of driving and within minutes he just got it! He went zooming around our commons area, and Speedy Red brought moments of joy, when there was very little joy in our lives.
Quote of the day: Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they're big, flashing signs that something needs to change. ~ Gretchen Rubin
If tonight's quote is accurate, then I have red flashing lights all around me. In any given day, I am filled with all sorts of emotions. Loneliness, envy, and guilt are definitely on the list. For the most part, I try not to be envious of others and their freedoms. Some days I think... it must be nice to sleep late. It must be nice to go out to dinner without balancing and juggling needs and bathroom accidents, or better yet it must be nice to travel and see something different for a change. I can feel all these things, but know they are all not obtainable. Naturally I had these same feelings when Mattie had cancer. They aren't new to me. But what is clear is the commonality of all types of intense caregiving is isolation and exhaustion.
Needless to say, I contacted the doctor and asked if I could bring my dad to my mom's already scheduled appointment. I felt like he needed medical attention before this started spreading. Mind you I just dealt with this nightmare three weeks ago. My dad scratched at bites on his hand and arm. It took three weeks for those sores to heal, and that only happened with antibiotics, steroids, and constant bandage changes. I thought I was going to get a break from this, but NO! I am right back at it again.
The doctor we are working with is new to us. My parent's doctor retired, and this new fellow absorbed all of the former doctor's patients. In any case, he went over my mom's medical history and of course NO ONE brought up dementia and memory issues. So I had to! He gave her a cognitive assessment on the spot and of course she did well! I truly think these assessments need to be thrown out the window because they are not helpful in determining true daily functioning. Any case, after the appointment was over, I emailed the doctor my mom's neurological testing results and reports. They depict a different picture! My mom has elected not to pursue any of the neurologist's plan of care, but I have told her, if I continue to see decline, we will have to address this, and I wanted today's doctor to be in the loop!
I am truly balancing a ton and my mom keeps peppering me. When I took them out to dinner tonight, she said to me that I am always complaining. Yes I complain on occasion, but not all the time. I am not sure what she expects. I am human and most humans do not do well with a total lack of freedom, isolation, and non stop work for almost two years. She has no insight or empathy and unfortunately I let her have it tonight. I told her she is very self focused. Always has been. I have had the privilege of being a mom for 7 years and during that time, my priority was always Mattie. His needs came first. It was just how I operated. I told me mom that she is not like this. She then asked my dad for feedback and he did not disagree with what I was saying. Needless to say, after lashing out, I felt guilty and not good about what I did. My mom maybe hurtful and self focused, but I do not have to follow suit.
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