Tonight's picture was taken on July 31, 2008. Mattie was diagnosed with bone cancer days before. Seven days later we had to explain to Mattie that he had cancer and what the treatment was going to do. His art therapists were fantastic, right from the beginning. They designed a bug made out of clay. It represented a "bone bug." A visual which I thought Mattie would comprehend and appreciate, since he loved bugs. I explained to him that he had bone bugs inside of him (even though Mattie liked bugs, he did not want them inside of him!) and the chemotherapy was designed to kill these bugs. Once we explained this to Mattie we then asked him to demonstrate what he wanted to do with the bone bugs and if his foot was the treatment, what would it do? He got it right away..... Mattie stomped on the bug and flattened it out!
Quote of the day: Alzheimer’s creates a kind of friction that the family needs to be strong for. You have to hold onto things and know what is true in life. ~ Candy Crowley
It is 6:30pm and this is the first time I have had a minute to myself all day. It won't last long as I have to cook dinner soon. After getting my dad up and ready today, I then had to take my mom to her first physical therapy session. An evaluation to be specific. The therapist was very nice but the session confirmed for me on paper that my mom is NOT in touch with her reality. She has no insight into her level of activity and frankly reports out as if she had her ability and energy from ten+ years ago. The therapist had her complete a survey called the ABC scale. I included it below. Clearly my perception of my mom's ability to balance and hers are not on the same page.
My mom completed these 16 questions and rate's herself by percentage.... 0-100%.
Several of the questions had me laughing as my mom perceived herself as being able to walk up and down a ramp without assistance, to be able to stand on a chair, and to be able to be bumped by people passing by without losing balance. All of these are a BIG NO! Yet for many things she wrote that she has 100% confidence she can do this. This is actually scarier for me than the fact that she can't do these things. Because what she thinks and can do, DO NOT match up with one another.
My mom has not come to accept yet that there is something wrong with her. Her symptoms are off the chart to me, and I manage her daily routine. We get into daily arguments over these issues, but at the end of the day, I am responsible for keeping her safe. Safe from herself and her poor decisions. I am glad she is willing to undergo further testing with the neurologist, because we need answers and if there is medication to help, I think we need to know this and have a plan moving forward. Right now I am on overload, caring for two parents, both with significant needs. This of course leaves little to no time for me on any level.
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