My mom, who lived with Alzheimer disease, and I were care partners for more than a decade. My care partnering role changed and evolved during that time. When it began, I lived overseas. In 2011, when it became clear she could no longer live on her own, I returned to Canada to live with her in her own home. She was relocated to a nursing home, which I came to call a “dementia jail,” on November 16, 2012. For the next forty-five months I visited Mom for several hours virtually every day.
I didn’t see her on August 11, 2016; I didn’t have the strength that day. But I was by her side for the next six, and I held her hand when she died on August 17, 2016.
Being my mother’s care partner was the hardest thing I have ever done. It was also the most rewarding. I learned so much. I loved so much. I cried countless tears. I wouldn’t trade the journey for anything because I also experienced the deeply spiritual privilege of loving another person unconditionally.
Below are ten important facts I learned during and after the time I spent being my mother’s care partner (I’m still learning!)
People who are living with dementia, no matter what “stage” of the condition they are living with:
- are human beings with wants and needs just like the rest of us
- have feelings just like the rest of us
- have rights just like the rest of us
- deserve to be treated with dignity, just as we all should be
- are aware of the world around them, even when it seems they might not be
- are capable of loving others
- deserve to be loved and cared for
- can teach us lessons if we are open to learning
- are different than us, not less than us
- are not “empty shells”
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