I am living with Alzheimer’s.
While Alzheimer’s can devastate a family, it brought my daughter Elizabeth and I much closer together. Most 24-year-olds would rather spend the majority of their time with their friends, but Elizabeth wants to spend extra time with me.
Alzheimer’s disease isn’t something I wanted in my life. No one does. But the disease has given my daughter a platform to advocate and to be a voice for caregivers. I couldn’t be prouder of her.
My Alzheimer’s story began two years ago. After 25 years in local government, most recently serving as the assistant city manager in Fayetteville, NC, I began to experience issues with information recall and my short-term memory, which caused a great deal of anxiety in both my work and personal life.
At age 57, I was diagnosed with younger-onset Alzheimer's, three words that would change my future and impact my life forever.
Following a very brief pity party, I recognized that by going public with my diagnosis, I could help educate folks, raise awareness and reduce the stigma associated with this disease. I began to get involved with the Alzheimer's Association Eastern North Carolina Chapter, which opened the door to many new opportunities, from speaking engagements to events at my local Walk to End Alzheimer’s.
From Daughter to Care Partner
When I was invited to be a member of the Alzheimer’s Association National Early-Stage Advisory Group, I began to consider who would be my travel companion for engagements associated with this role. My wife's job does not provide her with a lot of time off, so I needed to identify someone else to travel with me. We discussed this need at dinner one evening, and my daughter said, without any hesitation: "Dad, I'll be your companion."
During a recent trip to Chicago, Elizabeth helped me navigate my itinerary, checked me in at the airline kiosk — a major challenge for me — and stayed by my side throughout the trip.
Elizabeth now accompanies me to all of my younger-onset support group meetings and is a very vocal member of the group. She even volunteered to create and manage a private Facebook page, enabling our support group members to share updates about issues we all face, upcoming social opportunities and helpful educational resources. It gives me such pleasure to see her so engaged with this community that we are both now a part of.
Elizabeth has worked tirelessly to support me during Walk to End Alzheimer’s events and is always my biggest supporter. Recently she called and said "Dad, have you heard about goat yoga? I signed us up for a session. Oh, and by the way, the following week we're going tubing down the Cape Fear River.” Before I could respond, she said, "I love you and we’ve got to go!" (In case you don’t know, goat yoga is yoga practiced while surrounded by — and sometimes in tandem with — live goats!) She has brought a sense of adventure back to my life.
While my diagnosis had the potential to break her spirit, instead it has made her stronger, better-educated about the disease, a superb care partner and the best daughter a father could ask for.
I love you, Elizabeth.
About: As a member of the National Early-Stage Advisory Group, Jay wants to leverage his skills in local government to advocate for increased research funding and encourage greater participation in clinical trials. Jay and his wife Angela live in Raleigh, North Carolina.
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