A family's continued journey with early-onset Alzheimer's disease
(WHAM) - For the last three years, we’ve taken you on a very personal journey with a family from Pittsford. Amy Norton, a mother of two, was diagnosed with early-onset Alzheimer’s at the age of 43.
The disease has caused major shifts in the way the family operates.
We first met Amy in 2014. A year later, even with the advance of Alzheimer’s, Amy was still active. She couldn’t speak like she did a year before, but she could shoot hoops with her kids in the driveway.
Today, Amy sits on the couch most of the time. She can’t move like she once did, and needs help getting around. Her husband, Brian, says he wants to keep her at home as long as he can. But he admits its’s been a long four years.
“I’m fortunate, because she’s still here, in our house and we can still have a relationship,” said Brian Norton. “But it’s hard when I realize we haven’t had a conversation in over three years.”
Norton says, while the disease has robbed Amy of herself, it’s robbed the family of Amy.
“Sports events, graduation, prom, all those things have just been the three of us, and then including Amy when we can at home, because her world really is just the house,” he said.
Amy and Brian’s kids have grown up fast in four years, yet they maintain their bond with each other and their mother. 18-year-old Megan Norton attends college nearby, and 15-year-old Justin helps out with Amy at home.
“I appreciate being so close, because it’s like the little moment that I get to go home for like an hour, two hours, and I get to see mom,” said Megan. “I get to see Justin. I get to see Cooper, my dad. It’s just nice being so close.”
“It’s been kind of hard, because some of my friends go out and they’re playing video games, and I have to stay home with mom,” said Justin. “But my grandma and my aunt have helped a lot, because they come home on the weekends. So that helps a lot.”
Brian knows Amy will need more care in the future. He’s getting ready for that, and for a change in himself when it comes to his purpose.
“There is a power or a purpose that comes from the thought of saying my next career, part two of my life, is going to be more about giving back to others and finding a way to walk with others who are going through this disease, whether it be a sounding board to say, ‘I know how you feel,’” said Brian.
A future in advocacy is still years away. Until then, the Nortons – including Amy – are determined to be a family.
“It is hard,” said Brian, “but if we can just find a way to keep moving forward, putting one foot in front of the other, you can get through the rough patches, and there will be moments of joy, and of gratitude and acceptance of the disease.”
Early-onset Alzheimer’s affects people younger than 65. It affects about 200,000 people. Most people who are diagnosed are in their 40s and 50s, like Amy. If you’d like to learn more about Alzheimer’s click here.