The One He Trusted Most: Erin’s Caregiving Story

The woman I want to recognize is my little sister, Erin Cox.

Erin is the youngest of the three of us sisters, and when my dad was diagnosed with ALS, she was just about to move across the country and start the next chapter of her life. Instead, she put all of that on hold, and beyond that, took an extended leave from her career so she could be there and became my dad’s primary caregiver.

Caregiving for someone with ALS is constant. It is the big medical things, but honestly, it is mostly the small things that never stop. My dad was someone who valued his independence and routine, and losing those things was incredibly hard for him, but Erin figured all of those things out.

As my dad’s bulbar symptoms progressed, he struggled a lot with excessive saliva, and Erin always made sure he had a small piece of paper towel nearby because he needed it constantly. She kept a small cup of chocolate milk ready because, at that point, it was one of the only things he could still swallow comfortably.

I remember seeing that sequence of things for the first time about six months into his diagnosis, and it honestly knocked the wind out of me. Something so simple that had already become second nature to Erin. Realizing live, the difference between visiting the reality of ALS and living it every single day. Erin was living it.

When he got his feeding tube, she had his medications completely dialed in. She knew exactly how to grind them, the order everything needed to go through the G tube, and how to make the routine as smooth as possible for him. She also became one of the only people my dad would let brush his teeth because she did it right. She knew exactly how he liked his blanket. She knew the small things that made him comfortable.

My dad trusted her in a way that only happens when someone is there for every moment.

In a time when nothing about our lives felt normal, Erin was the one who kept some sense of normalcy for him.

Everyone in our family showed up for my dad in different ways, but Erin carried the day-to-day reality of his care. The sacrifice she made by putting her own life on hold for him is something I will never fully be able to put into words.

This Women’s History Month, I want to recognize Erin, caregivers like her, and daughters of fathers with ALS who step into a role they never expected and show up every day with a level of love, patience, and sacrifice that most people will never fully see.

Submitted by Erin’s sister, Emily Cox

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