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The Best Daughter a Father Could Ask For: Jay Reinstein Honors Care Partner Elizabeth

The Best Daughter a Father Could Ask For: Jay Reinstein Honors Care Partner Elizabeth
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October 28, 2019
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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 Diagnosis
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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Showing 4 of 4 Comments
Thomas Keenan
Apr. 27, 2020 – 09:15am

Jay, your story is compelling in so many ways. I met you on the streets of Downtown Albany NY. You were accompanied by a younger African American gentleman. You asked me about some of the local architecture. I believe that led to you asking what I did for a living. Most people don't gush when you tell them you are a public employee, but you reacted much differently. Now I see why. The decision you made to retire and begin telling your story and supporting others who might also be impacted by Alzheimer's is just another example of your continued leadership. I appreciated meeting you and chatting. Something tells me we were meant to meet that day. I'm sure the reason is not clear today, but I will see it someday when I least expect it. Good luck in your new role. You are certainly a great ambassador, not only for the Alzheimer's Association, but North Carolina too. I hope i represent(ed) Albany, NY just the same.

Jay Reinstein
Aug. 13, 2020 – 11:28am

Thomas- Sorry it took me so long to respond. I remember our conversation very distinctly and you sharing information about Albany and it’s history. I hope you are well and really appreciate your kind words!

Celia C
Dec. 21, 2019 – 07:23pm

What an awesome 👍 daughter you are Eizabeth. Jay your efforts and the support of you and your daughter are greatly appreciated. What a team! My prayers 🙏 and thoughts are with you and your family as well as all the lives affected by this devastating desease. God bless!

Erin Hunter
Oct. 30, 2019 – 01:38pm

Thank you for sharing your love with the Alzheimer's community, Jay and Elizabeth!

Marianne Chanti-Ketterl
Nov. 06, 2019 – 02:48pm

Jay, you are an inspiration to everyone who knows or hears about you. I am deeply humbled and honored to work with you at the Eastern North Carolina Chapter. Thank you so much for all you do to raise awareness.

Lisa Roberts
Oct. 30, 2019 – 01:33pm

Jay, we are so grateful, honored and proud of you and Elizabeth! Your bravery in sharing your journey has impacted so many lives. Thank you for all you do, for being who you are and for helping us move the mission forward! Thank you! Lisa Roberts, Executive Director, Eastern North Carolina Chapter.

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