Long-Term-Care

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.

I’m safe, fed, and have my physical needs met, but it wears on me. The sameness, and increasingly, the small indignities.

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.

My evaluation recommended home and community based services in 2011. Nobody told me. I found out fifteen years later, when a woman sat in my room and said the sentence that had been written down all along.

I bought a chew tool because I kept catching myself chewing my fingers. It turned out the need went deeper than a habit. The nursing home took away most of my sensory input, and my body found another way to get it.

The independence movement was a necessary fight against institutionalization, but it equated freedom with doing things alone. It never made room for people who need support, and it turned needing help into a failure state.

Without a written standing order, every meal becomes a negotiation, and I am the one who loses every time.

The federal government created ABLE accounts so disabled people could receive funds without losing benefits. No fundraising platform will deposit to them. That’s not how this is supposed to work.

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.