It’s a quiet summer evening. I sit across from my Mother’s hospice bed, listening to her uneven, labored breathing as she sleeps. The room is large enough for a portable bed where my Sister and I take turns spending the night. We’ve become accustomed to the shift changes, bed turns and temperature checks. We look forward to seeing the nurses, aides and social workers who keep this place running smoothly, and we’re thankful for the comfort they provide. 

Still, they serve as a backdrop for the star of our stay. And our star is fading. She has survived for weeks without nutrition and hydration. She’s no longer able to move on her own, and she’s lost the capacity to speak. 

For 14 years, we’ve seen our Mom shift from a vibrant, social Scrabble Queen to a woman who can’t swallow. The changes in between have been vast, cruel and devastating. 

Throughout this protracted, agonizing decline, she has lost her memory. Like some slowly deconstructing puzzle, the pieces have gone missing, into hiding, dissolving in the air. Yet, mercifully, she has always remembered us. Now it’s nearly our turn to remember her. To lose her. To never again hold her in our arms.

It’s heartbreaking to walk in memory of my brilliant, beautiful, loving Mother whose own memory is long gone. But it’s necessary. It’s necessary that we end this dark, deadly disease. This can only happen with help, hope and hard work. 

Please join our team, in action or in kind. Please help my Mother’s story become history, a warning, a distant memory.

Thank you,

Carol