My sister made her end-of-life wishes clear. Then dementia took hold

Honoring the wishes of a woman -- what she wanted when she was well might not be what she wanted when her memory faded and her personality changed.

I had learned that the light of my sister’s spirit was stronger than her illness. It would survive.  

In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth. Sometimes, she could take a bit of applesauce on a spoon. We’d wait to hear a gulping swallowing sound. And then, after giving her time to rest, we’d try again. She was fading.  

Family surrounded her day and night. We never sat down and talked about my sister’s wishes. But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect. Be there by my side. Love me. Remember me.”  

 In the end, the feeding tube was a side issue. My sister was dying, one way or another, and nothing could change that trajectory. Her husband and children decided against artificial nutrition or hydration. It was what she’d said she wanted.  

They don’t regret it. Neither do I. And yet. We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier. We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily. Every step of the way, we let her know her life had value.  

And when the hard times came, we didn’t duck. We were fully present. My sister passed peacefully last November, surrounded by people she loved. She was 58. When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end. That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life. I carry it with me to this day.

My sister made her end-of-life wishes clear. Then dementia took hold