Fresh out of college, Alison Griffin-Hunter expected to join the adult world.
She didn’t expect to take on the role of parent to her 16-year-old sister.
She really didn’t expect to become the caregiver for her mother.
But with her father’s death from brain cancer a few years prior and her mom’s recent diagnosis of young-onset Alzheimer’s disease, Griffin-Hunter stepped into a new life.
“It just felt like I had to step up and take care of things,” Griffin-Hunter said. “I had to become the parent to my sister and my mom.”
This month, Griffin-Hunter will honor her late mother, Anne Marie Hunter, at the Walk to End Alzheimer’s in Omaha. The walk, organized by the Alzheimer’s Association, is designed to raise funds and awareness of the disease. There are three walks in the metro area. The event kicked off in Sarpy County on Aug. 25, and another walk follows in Council Bluffs on Saturday. The Omaha walk, where Griffin-Hunter will participate, wraps things up on Sept. 22.
Griffin-Hunter has participated in the Walk to End Alzheimer’s every year since her mom’s diagnosis. This will mark her first walk in Omaha since moving here from California.
Griffin-Hunter first noticed her mom’s symptoms on a family trip to Europe. She had trouble navigating and felt “out of her element.”
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Her mom, a high school dance and drama teacher, became forgetful as time went on. She missed classes, didn’t finish grading and couldn’t remember students’ names.
Her daughter started scheduling doctor’s appointments. But they weren’t getting answers. Doctors suggested personality disorders or menopause.
“It was frustrating,” Griffin-Hunter said. “She took this intensive digital memory test, and she bombed it. I was just like, ‘Why aren’t you seeing this? Why aren’t you making a diagnosis?’ ”
The symptoms seemed familiar. Griffin-Hunter’s grandfather and great-grandmother both were diagnosed with the disease when they were in their 80s. A call from the principal at Hunter’s school prompted Griffin-Hunter to attend a support group meeting with the Alzheimer’s Association, who gave her a doctor referral.
Her mother, 54, was diagnosed with Alzheimer’s disease in November 2012, about a year and a half after major symptoms started to appear.
“There was a little, ‘Why her?’ feeling going on. She was just such a positive person and a great influence in the community,” Griffin-Hunter said. “She had just lost my dad to brain cancer. We had foreclosed on our house. It was like, ‘Why is this happening all at once?’ ”
Hunter moved into a care facility shortly after the diagnosis. She quickly fell into a role of an honorary volunteer; Hunter would greet visitors and fetch caregivers for other patients.
Early on in her diagnosis, Hunter was happy-go-lucky. She and her daughters joked about the illness and kept things lighthearted. It got harder as the disease progressed, Griffin-Hunter said. It became harder to hold her mother’s attention, and she became anxious.
Hunter died in February at age 60.
Griffin-Hunter, now 29, had been involved with the Alzheimer’s Association in California and now in Nebraska. She attends the walks annually and has attended an advocacy forum multiple times. This year, she and a group of other supporters visited Washington, D.C., to speak to representatives about a bill that would allow individuals living with dementia under age 60 to take advantage of programs under the Older Americans Act.
“Alzheimer’s disease is incredibly challenging, regardless of age,” Griffin-Hunter said. “I just want to raise awareness that it can happen when you’re younger. It really affects people’s lives.”
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