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if you wanna show, then just let me know And I'll sing in your ear again
Late-stage Alzheimer's is not easy to see, not easy to describe to someone who thinks this is just a disease about forgetting names or places. But everything is ceasing to remember the proper order to things: brain controls all and without it, the limbs stop working, the voice is silenced, the eyes track less and less with time.
It is hard sometimes to share these photos, to take them at all, because who wants to see someone in this state? Who wants to be photographed in this way? But is this not still my mother? Aren't I still allowed to take my picture with her? To share that picture with the world?
It is uncomfortable to know that my mom makes other people uncomfortable, uncomfortable to think that many people think what's good and fair is to hide her away... for the sake of her "dignity," but mainly for their own comfort.
I remember the last time my dad took my mom to eat in town, a weekend ritual, one of the last bits of normalcy left in this new normal we did not ask for. Mom was still mobile then, could still get in and out of the car, but needed to be fed, could not track conversations in ways that seemed socially acceptable. My dad would cut her food for her, guide her hand to her fork.
I was surprised how quickly they made it home, how different my dad's mindset was from when they left just a short time before. They saw an old friend out, the old friend saw them. But the friend pretended like they hadn't, uncomfortable and unsure how to approach my parents, my mother. In that moment, my dad realized that another door had shut for them, asked for the check, boxed up the food, and came home.
It's been years since then. Years in hiding, wondering how to answer when people ask "How is your mom doing?" Wondering how much I am allowed to share before other people's comfort dictates what's okay. Her eyes cannot focus on the camera, but she is still my mother. The curve of her mouth is different, but she is still my mother. She exists as I do, between two worlds, but we are still here, her blood is my blood, her memories mine to keep. We are here and we cannot be bothered with how comfortable that makes you. That was never our intention, anyway.