“I was twenty-one the last time I heard my mom speak. She hated tattoos, but my sister and I got one on what would have been her sixtieth birthday—to honor her. My tattoo is of the sound waves from a voicemail she left me. It says, ‘I love you. Um. Um. Stephanie. I love you. Bye.’

My mom’s name was Susan. She was forty-five when we started noticing signs of early-onset Alzheimer’s. She lost her speech and handwriting first. She stumbled on words or would walk into a room, look confused, turn around, and walk out. We didn’t understand what was happening at that time, and Mom got really quiet about it. It took four years to get a diagnosis. She was so young that doctors said she was just stressed out or menopausal. They told us to take her to a psychiatrist. We went to the Mayo clinic in Rochester and got an instant Alzheimer’s diagnosis.

While I was struggling with the deterioration of my mom, I heard country singer Jay Allen’s song ‘Blank Stares’ about his mom who also had early-onset Alzheimer’s. I was living in Minnesota and sent Jay a Facebook message asking him to perform his song at an Alzheimer’s fundraiser in Minneapolis—thinking he would never see the message. He got it and said yes.

I was asked to be the gala speaker alongside Jay, so we worked together. The song ‘Blank Stares’ opens with a voicemail from his mom: Jay played the voicemail before singing it. He brought me on stage. I spoke for ten minutes, ending with my mom’s voicemail. It was the first time they raised a million dollars for Alzheimer’s in one night.

Mom passed away six years ago. She was fifty-nine. I was seventeen when her disease started and was still so young when we lost her. I didn’t know who to talk to or how to get rid of the sadness and frustration. I poured my soul into anything Alzheimer’s-related, doing a lot of volunteer work for the Alzheimer’s Association in Minneapolis. I also started my own fundraiser, raising $100,000 over five years.

As hard as this has been, some of my best friends came out of the Alzheimer’s Association. I lost my mom, but gained some amazing people. And I have the most beautiful angel watching over me.”

Stephanie

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Just stay a little while

Please stay a little while

If I can only seal the cracks you’re slipping through

Wish I didn’t feel so helpless when it comes to helping you

Hold on

So I keep holding on

To every little memory made of you and me

Every little glimpse of who you used to be

I know you’re still in there

Deep down somewhere I swear I still see you

Between the blank stares

It’s getting harder and harder

To watch you disappear

Oh if only farther leaving me in tears

“Blank Stares by Jay Allen