Dealing with early-onset Alzheimer's
Pittsford, N.Y. - Like so many families dealing with Alzheimer's disease, finding a positive outlook on the situation is a daily choice. Although Amy Norton, mother of Megan, 15, and Justin, 12, looks like any other mother, she has Alzheimer's. She's 46 years old and was diagnosed last year when depression and forgetfulness set in after her mother died. The family, stunned by the news, sought out the advice of two separate doctors, both confirmed the diagnosis.
Brian Norton, Amy's husband said, "You sit there and you get that punch in the stomach and you wonder, 'Ok, where do we go now?'"
For the Nortons, that meant a move from Atlanta, Georgia to Rochester to be closer to family. Amy Norton's Alzheimer's is rare. According to the Alzheimer's Association, about five percent of Alzheimer's cases in the United States occur in people under the age of 65. When it does it's called "Younger Onset Alzheimer's." Patients are struck in the prime of their lives and, often, have children who still depend on them. The diagnosis is especially hard on Megan and Justin Norton who, despite the effects of the disease on her, still consider Amy Norton to just be "mom."
"People have their moms and dads that can do stuff for them, that can drive them around, that can go their soccer games, baseball games, but it's like, we have one of those now. We have our mom, but she doesn't do as much as she used to, we have my dad that does everything," said Megan.
The support from the Norton's family in Rochester is helping but things can get overwhelming. Brian Norton says he keeps the family's routine as simple as possible.
"We have to be mindful of how she feels, if she can go out for long periods of time, she does get distracted or upset after being out for a time so we do have to plan, " Brian said.
Part of that plan includes being open about what's happening. Megan has spearheaded a teen support group through the Rochester chapter of the Alzheimer's Association. It's for young people whose family members have the disease. Megan says there isn't much available for teenagers.
Megan said, "Sharing the story has helped other people see that you're not alone, there are other people dealing with this just like we are."
Brian Norton said talking about Alzheimer's demystifies the illness and proves it's not just an older person's concern. Amy is still in the early stages so he says he knows there are challenges yet to come, but he says his family is staying the course, and, as a spouse, so is he.
"She needs me to be a different person, to be more patient, to be less selfish than I might have been. I guess another way to look at it is, I made a commitment to her and I'm going, through thick or thin say 'this is the way it is' and I'm going to be there for her," he said.
The Norton family recently took part in the annual "Walk to End Alzheimer's" put on by the Rochester Alzheimer's Association. Their team name was "Hugs4Mom." Megan's support group runs in eight week periods and is set to begin again in January. To contact the Alzheimer's Association about this and other support groups call (585) 760-5400 or go to www.alz.org/rochesterny for more information.