Caregiving

My mom has been my caregiver for thirty-four years. People call caregivers heroes, but she would never call herself that. She did it because she was my mom and she loved me.

The disability rights movement says people with disabilities should live in the community, not in institutions. Texas funds five hours of care a day. I need 24. I’m sitting in the gap.

I spent thirty years believing I hated writing. The problem was never writing. It was the barrier between my thoughts and the finished words, and the mom who saw that before I did.

A reflection on seven months of loss, change, and becoming. How my plans fell away so something else could take shape, and how I found peace with who I’m becoming, even while some questions remain unanswered.

The care system measures whether you can walk, eat, and speak. It doesn’t measure the kitchen you can’t use, the routine you can’t control, or the relief of finally stopping the impossible job of being your own full-time caregiver while disabled.

I’m grieving the realization that the independent future people imagined for me wasn’t based on my actual support needs. It was based on what they could see, what they wanted to believe, and what systems are willing to recognize.

I entered nursing home care because I needed to get out of an unsafe situation quickly. But the crisis also forced me to face a bigger truth: I may need full-time long-term care, even if a nursing home isn’t the right setting forever.