Tonight's picture was taken in July of 2008. Mattie was six years old and we went for a walk on Roosevelt Island that day! Mattie loved the big rocks along the trail paths and climbed these rocks each time he visited. To me Mattie looked like the picture of health here, yet weeks later was shockingly diagnosed with cancer.
Quote of the day: Treat every small victory like you just won the Super Bowl. ~ Lewis Howes
Today I decided NOT to give my dad any pain meds. NOTHING. No Oxycodone and no Tylenol. Only his back pain patch. I did not discuss this with him, because then he would perseverate on it, which would only be counterproductive. I feel the pain medication isn't a good match for my dad and if he could do without it, it would be better for him. Thankfully, transferring my dad out of bed was more manageable today as was getting him into the shower. YES he complains, but he isn't screaming in pain. So I view this as a small victory for the day. Don't get my wrong, I still have my hands full, but I feel more confident in my abilities to manage his physical needs.
Once I get my dad into the shower and safely in his shower chair he typically can shower himself. I have everything lined up for him, from his shampoo to soap on a bath type sponge. Normally, while he is showering I can make/change his bed linens, and clean his bathroom. Prior to his hospitalization, my dad knew exactly what to do with shampoo and soap. Today, after ten minutes of my dad being in the shower, I looked inside and NOTHING had moved. This clued me into the fact that he has NO IDEA what to do with shampoo or soap anymore. So in essence I took a second shower myself today, as I got soaked, cleaning him in the shower. With each hospitalization, there is always a decline in my dad's cognition, which makes caring for him challenging.
I did get my dad to his memory care center today. It was his first day back after three weeks away! After dropping him off, I did chores like grocery shopping. For the past three nights, my dad has refused to eat dinner, so I bought things like fresh bread to entice him to eat, as my dad is a big bread lover!
Literally when I woke up this morning, I said to myself, maybe after doing chores today, I can lie down a bit, in hopes of managing my intense migraine, which I have had since I hit my head while fainting on Monday. However, it never works out for me, because as soon as I came home and put away groceries and dealt with the laundry, my mom wanted to go out.
I took my mom to Starbuck's, which is one of her favorite places to go! Keep in mind, I haven't been there for three weeks. As soon as I walked in, all the people behind the counter shouted out.... HI VICTORIA! Apparently they missed me and I told them why I was coming in! One of the people I talk to there is a young woman named Alex. She eventually wants to become a nurse. We talked about the complexities of life, but the importance of trying to find moments/glimmers in all the daily turmoil. I told Alex that coming into Starbuck's and chatting with her and all the other wonderful people behind the counter, brightens my day. Her response to me was..... some days I think what ever I do, doesn't matter. I told Alex..... this is not true. Her kindness, smile, and taking the time to talk to customers ALWAYS matters. They may not tell her, but I guarantee that is true, as it is definitely the case for me, as coming in and chatting with her and others provides me an escape, a moment of peace. She literally stopped what she was doing behind the counter and said.... thank you for telling me this, this made my day!
Remember I also know several regulars at Starbuck's. One of whom came up to me and said he missed seeing me the last three weeks! This fellow served overseas and has an amazing German Shepherd, who was a working dog! I connected with this furry friend immediately when I first met the duo months ago.
While at Starbuck's I took one of the Foundation's research grant applications with me to read. Mattie Miracle awards many innovative research grants a year! One of the applications I was reading today fascinated me. Maybe it fascinated me because I could personally relate to the content (given my own predisposition to cancer, which I explained in yesterday's blog). The research pertains to investigating our Psychosocial Standards of Care with children who are genetically predisposed to developing cancer. They do not have cancer currently, but their probability of getting cancer is HIGH! Therefore, these children endure constant scans and assessments over the course of their entire lives. That may not sound like a big deal, but psychosocially it is huge! It is daunting knowing that at any point you could be diagnosed with cancer, it is like you are a walking time bomb. Of course the issue is there are NO psychosocial services for patients like this, because they don't have the disease. Yet these "patients in waiting" have chronic psychological distress, anticipatory anxiety and other life disruptions. When our Psychosocial Standards of Care were designed, they were designed for ALL children diagnosed with cancer. This research proposal would like to investigate extending the Standards to those predisposed to the disease. This study greatly resonated with me, and frankly until this was brought to my own attention (professionally and personally) it was no where on my radar scope.
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