A carer’s perspective which I have borrowed from Adjunct Wizard. It is important to realise we are not the only ones going along this journey. The carers too have to manage this life together and their frustrations – just like ours – are real and oh so relevant!
WITH A POIGNANT EYE TOWARDS CAREGIVING AND LIFE WITH A PARKINSON’S PATIENT AND HER OFTEN CONFUSED AND MADDENINGLY DISORIENTING WORLD
How Big are You
Author and futurist Robert Anton Wilson on the size of a person:
“You are precisely as big as what you love and precisely as small as what you allow to annoy you.”
Source: Nature’s God— from James Clear’s email
This appeared from James Clear in his email newsletter.
It spoke to me. Deeply.
I do feel small when I allow Cheryl’s disease to become her. It boils over into anger and guilt. I forget often that she is not her disease.
She has been getting physical therapy to help her with movements like getting out of a chair. Sit to Stand is the notation on the PT’s notes. This motion is natural to non-PD people. One does not even think about the mechanics of it. Cheryl has to think and remember the sequence of moves. Depending on the time of day and how she is feeling, thinking and memory are difficult. So she simply cannot remember how to get out of a chair.
When she has fallen and when she falls it is always backwards. I encourage her to lean forward at her waist and push off the chair as the PT told her. Nose over toes is the mantra. But in view of anything, walker, table, person, nearby grab bar or whatever grip, grab and pull easily win over N-O-T. I encourage by telling her where to put her hands and how to position her body. She responds with don’t-tell-me-what-to-do anger. I respond in kind and then feel bad because I was to her unkind.
I love her dearly (big). I am annoyed with her disease (small) and I allow it to be her (smaller).
My personal reason for writing this is to hold that idea up in the light and discern how to be better next time. I am grateful for all the next times even though anger anxiety and anxiousness might creep back in. It is hard work and I am not that good at it.
Time to meditate and ponder with deep sagacity.