Many Native Americans with Alzheimer’s are outcasts in their own communities. There’s little knowledge about the disease on reservations, let alone support and resources. Some family members who have left the reservation to find work are compelled to come back to care for their loved ones.
Delma Salazar sits close to her mom Agnes Williams in their living room.
Williams looks like she’s trying to complete a puzzle and then gives up and falls asleep. She’s in a progressed state of the brain disorder. She must be led to the kitchen to eat and to her bed to sleep. Often, she reverts to her Native language, but her daughter can’t understand her.
Salazar, her husband and three kids were living in Los Angeles eight years ago, when her sister called. She told Salazar their mom kept forgetting things and getting lost.
“I didn’t know what Alzheimer’s was,” Salazar said. “Nobody’s ever talked about it. Maybe it’s an embarrassment.”
Salazar brought her mother to live with her family in Los Angeles, but Williams had never been off the reservation. Soon she kept running away and forgetting where she was.
“It was one night I was sleeping in the living room, and I remember waking up and watching her walk into the kitchen,” Salazar said. “And she just looked up, she looked around and she was wondering where she was at. And I think that was the most scariest part for me because then I realized she really doesn’t know.”
In her rare moments of clarity, Williams would say she was desperate to go home, so they moved back to the Salt River Pima-Maricopa reservation southeast of Phoenix in rural Arizona.
Williams has 14 kids, many of whom live on the reservation. But Salazar is the only one caring for her mom.
“I don’t know if they (her siblings) are scared to see her like that,” Salazar said. “I know they say they have their own family now. It hurts that nobody visits. I’m guilty I didn’t believe her when she didn’t remember.”
Nicole Lomay said Salazar’s story is very common.
Lomay travels to the Arizona tribes as community outreach representative for Banner Alzheimer’s Institute.
“The people come to me and tell me, ‘I didn’t know. I didn’t know that my wife is having symptoms of Alzheimer’s disease,’” Lomay said. “‘And I was giving my wife a hard time. I thought she was just getting on my nerves. I thought she was doing it on purpose.’”
Lomay, who is Navajo, has a grandfather with dementia.
“He was herding sheep in his truck,” Loma said. “So they were allowing him to drive to the location where these animals are. With my own family they didn’t have the resources, at all.”
Only half of the general population with Alzheimer’s disease ever gets diagnosed. A diagnosis is even rarer in Native American communities. There’s a cultural notion within the community: People begin life as a child and end life as a child. Many Native Americans don’t recognize it as a disorder.
The Banner Alzheimer’s Institute holds workshops for health care providers and social workers, teaching them how to do memory screenings, talk to families and lead support groups.
Salazar said she doesn’t have time to go to support group meetings, but having an understanding of the disease does help. She has learned to cherish the rare moments when her mom wakes up and laughs or shows a glimmer of her old self.
“We’ve always been close,” Salazar said. “So to see her be that strong native woman always cooking, always cleaning, trying to plant her own garden — that was a whole different picture compared to now, and it’s hard.”
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