I believe that caregiving is an art.
I wore that hat in many different settings, including ones where I also supervised other caregivers. However, I never expected to be a caregiver for one of my teenaged children. After my daughter Beth’s spinal cord injury, I quit my job at the Tiffin Center, a state institution in Ohio, to care for her. We didn’t know at the time that she would not need my help for long. Through her four years in high school, Beth figured out how to be independent as a quad. What a wonderful thing, to take care of yourself, by yourself! So many of us take it for granted.
I believe that empathy, not sympathy, is essential for a caregiver, along with the abilities to pay close attention and understand the person being assisted. Even nonverbal individuals communicate in many ways. For some, there is a specific routine.
For others, the caregiver’s job shifts and varies when the person with a disability is determined to accomplish new skills. With Beth, I had to resist the urge to jump in and make her life easier. I learned to step back and wait for cues to help. I erred on the side of fostering independence, though it was always hard to watch her struggle. Sometimes, help wanted and help needed can be two different things.
Cindy has been a life-long disability advocate and caregiver. She’s worked with children who have epilepsy, cerebral palsy, autism, and developmental disabilities. In 2000, she and her daughter Beth were in car accident when Beth became a C6-C7 quadriplegic. Cindy was Beth’s caregiver for four years, and helped her daughter become independent again.
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