Two years ago, Elizabeth Reinstein was a normal college student at East Carolina University, worried about finals and finishing her senior year. But when she graduated, her whole life changed.
Her father, Jay, who she describes as her sports-watching buddy and “best friend,” was diagnosed with younger-onset Alzheimer’s disease. He was only 57.
“It hit me really hard when it happened,” Elizabeth says. “Before his diagnosis he worked for the city of Durham, and was promoted to be the Assistant City Manager of Fayetteville. When he found out he had Alzheimer’s, he had to retire and that was probably the hardest thing he ever had to do. Work is really his life.”
But Jay found a new purpose: going public with his diagnosis and experience to help others who may be facing dementia. He accepted a nomination to the Alzheimer’s Association National Early-Stage Advisory Group, and began traveling around the country to share his story.
But he knew he couldn’t do it alone. “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,” Jay writes in a recent blog post on alz.org. “We discussed this need at dinner one evening, and my daughter said, without any hesitation: ‘Dad, I’ll be your companion.’”
“We hang out a lot,” Elizabeth says. “We get breakfast, go to the movies, get dinner or just watch a lot of football and basketball together.”
While Elizabeth says her dad is still the “jokester” he was when she was growing up, she is starting to see subtle differences in his behavior attributed to Alzheimer’s disease, such as short term memory problems and frustration when he can’t complete his sentences.
“He forgets little things, like the name of an actor or athlete or something, and he will look at me to fill in the blanks,” Elizabeth says. “I’m usually pretty good at it. We have a really special relationship.”
Elizabeth accompanies her father to his Younger-onset Support Group once a month with the Alzheimer’s Association, and during one of their meetings, she learned about RivALZ – Blondes vs. Brunettes Raleigh (RivALZ Raleigh), the Association’s flag football fundraiser that inspires fundraising, awareness and action in the fight against Alzheimer’s disease.
Although she had never played football before, Elizabeth and her dad were huge fans of the sport, and she was intrigued by the idea of being on a team with other women.
“Everyone has been really welcoming,” Elizabeth says. “When I played in my first practice, I realized I was not that coordinated, but everyone was super nice and supportive and it made it so much better. It’s all for a good cause and that’s what matters.”
She has also used her personal fundraising page to share her story on social media, and talks to her c-oworkers at the school where she teaches to inspire others to get involved.
“I think from society, there is such a stigma with Alzheimer’s, especially with younger onset,” Elizabeth says. “People think that just because my dad looks okay that nothing is wrong with him. But no one knows what’s going on in his mind.”
She continues: “Even my friends say things like ‘Oh, your dad looks great. We’ve seen all the stuff he posts on Facebook. He’s doing such big things,’ and he is, but there are also times where it’s so hard for him. I want to change that idea and that stigma.”
In changing that stigma, Elizabeth has followed the same motto: taking one day at a time as she inspires others.
“Something that’s really helped me get through it is really just living in the moment,” Elizabeth says. “It’s really hard to dwell on the future because you don’t really know what’s going to happen. So appreciate everything that you have right now.”
On June 13, the day of the event, Jay plans to be in the stands watching his daughter play and fight for the cause that means so much to both of them.
“My dad is my best friend, but the game is not just for him,” Elizabeth says. “It’s for everyone who is dealing with this disease.”
RivALZ is a volunteer-driven flag football fundraiser where two teams of young professional women (and men) are organized around age-old rivalries – East vs. West, Blondes vs. Brunettes, City vs. Suburbs – to tackle Alzheimer’s disease, the nation’s sixth-leading cause of death.
This year’s RivALZ – Blondes vs. Brunettes Raleigh will take place on June 13, 2020. Interested in joining us as a player, coach or superfan this year? Registration is open through the end of March.
Visit: RivALZRaleigh.org or call 800.272.3900 to learn more.