During his last years of life, Sue Mann’s father spent his days in a fog — sometimes unable to even remember his daughter’s name. He required constant supervision and care from family members, and became confused and frightened by anything out of the ordinary. Occasionally, he would remember events from the past, other times even those memories faded.
Mann set up safe spaces in her house for her father to work on small projects that might jog his memory like sorting a junk drawer, and she kept family pictures on a table to help him remember his loved ones.
She would try to tell her father what he accomplished in his life, but was often faced with a man who didn’t know who he was, and who had, in many ways, reverted back to childhood.
“That was just very hard to see, because dad has always been the rock in our family — a very strong, amazing man. And he became this very quiet little boy who just wanted ice cream,” she said. “It’s heartbreaking.”
Until his death in October, Mann’s father was one of the millions of Americans who suffer from Alzheimer’s — a degenerative brain disorder that erodes memory and thinking skills.
The disease, which is the most common cause of dementia among older adults, according to the U.S. Department of Health and Human Services’ National Institute on Aging, leaves patients unable to perform basic tasks and requires families to find a way to care for a permanently dependent adult.
“You can’t leave them alone,” Mann said. “You can only imagine — you just really give up your life and your life is on hold.”
Not only was watching her father’s health decline emotionally difficult, managing care for someone unable to function independently was exhausting, she said.
“It’s financially draining for families, and mentally draining for families,” Mann said.
Mann said it was hard to find caregivers who could take on the challenges of a late-stage Alzheimer’s patient, and putting her father in a home was cost-prohibitive.
“We need a place for Alzheimer’s patents to be able to go and have a place to stay,” she said.
In Alaska, Alzheimer’s was the ninth leading cause of death in 2016, with 111 deaths, at a rate of 25.8 people per 100,000 people, according to the Centers for Disease Control and Prevention. Altogether, an estimated 6,800 Alaskans are living with the disease, according to the Alzheimer’s Association — a Chicago-based nonprofit dedicated to Alzheimer’s care, support and research.
This week, a group of community advocates are working to help families like Mann’s struggling with the disease by participating in the “Longest Day” campaign — a worldwide fundraising effort sponsored by the Alzheimer’s Association.
The event, which happens annually on or near the June 21 solstice, challenges local communities and individuals to organize or participate in fundraising efforts to support the organization’s research.
Local advocates Cindy Harris and Karen Burger organized the 3rd Annual Golf for a Cure Alzheimer’s Golf Tournament as part of this year’s campaign. The golf tournament, which takes place Saturday at the Bird Homestead Golf Course, will include rounds of golf for four-person teams, prizes, a barbecue, live music and a silent auction.
Burger got involved in working on Alzheimer’s disease issues after watching her grandfather suffer from dementia. She has organized the golf event for the past two years and hopes to raise $5,000 this year.
“We’re hoping to get bigger and better as years go by,” she said.
Harris said she got involved in 2014 after losing her mom and her mom’s three sisters to the disease.
An Alaska ambassador for the Alzheimer’s Association, Harris travels to Washington, D.C., annually to participate in Alzheimer’s Association’s Advocacy Forum.
“I go to D.C. every year and meet with senators and congressmen (to advocate for) policy change as far as finding a cure, funding research and what we need for people with Alzheimer’s and other dementia,” she said.
This year, Central Peninsula Hospital caretaker Molly Pellegrom is standing in for Harris as an ambassador at the forum, which is taking place over the weekend.
A nursing student who hopes to specialize in palliative care and dementia, Pellegrom has seen firsthand how Alzheimer’s affects patients. Alzheimer’s patients are stuck in a loop — living the same day over and over again.
“They wake up in a strange place everyday — not knowing who they are, where they are, who’s around them,” she said.
Alzheimer’s sufferers can lose all sense of who they are and what they have done in their lives, and lose the ability to tell their own stories, she said.
“You live such incredible lives and do such amazing things, and end up being diagnosed with a terrible disease,” she said. “Life is kind of robbed from you.”
Pellegrom hopes the fundraising and advocacy efforts help the community better understand the effects of the disease.
“You never know if it’s going to be your own family member,” she said. “Just appreciate what you do have, the life that you are living — I guess don’t take that for granted.”
Reach Erin Thompson at firstname.lastname@example.org