As Linda Donahoe put on a pair of thick gloves, a pair of blotchy-lensed sunglasses and a pair of muffling headphones so that she could better experience what it is like to have dementia, she told a story about her mother, who has Alzheimer’s disease.
“People are stealing from me,” Donahoe said her mother will constantly say to her.
“What’s missing?” Donahoe responds.
“I don’t know,” her mom will tell her in exasperation, “but I know that it’s gone.”
On Wednesday, Donahoe gained new insight into her mother’s condition when she underwent a program called a The program, developed by a Georgia company called Second Wind Dreams, uses physical restrictions — like the gloves and glasses — along with flashing lights, loud noises and confusing instructions to simulate what a person who is experiencing dementia feels. Evy Cugelman, who administers the tours locally for , said participants often wander around the room disoriented or mumble questions to themselves about what they should be doing.
When she emerged from the tour, Donahoe — who also volunteers as a call-taker for the Alzheimer’s Association of Colorado’s help line — said the experience made her better understand the vividness of her mother’s hallucinations and why her mother can be so stubborn in believing in them.
“We can’t expect to have people who have dementia just do what we want them to do,” Cugelman said to Donahoe.
November is national Alzheimer’s Disease Awareness and Family Caregivers Month, and it also marks the start of the busy season at the Colorado association’s help line. Amelia Schafer, the association’s vice president of programs, said the line will typically receive about 500 calls a month, but that number climbs to as many as 650 a month during the holidays.
“As families are getting together, they notice, ‘Wait a minute, something is really wrong here,’ ” Schafer said.
The association estimates that there are 67,000 people in Colorado living with Alzheimer’s and nearly 240,000 caregivers who watch over them. Both numbers are expected to grow as the baby-boom generation ages.
Donahoe said she has taken calls from caregivers who are in tears or at their wits’ end. When her mother, Dottie, first began showing symptoms of Alzheimer’s five years ago, Donahoe said she would get frustrated and angry.
Because of those struggles, the Alzheimer’s association devotes roughly half of its resources just to helping caregivers, Schafer said. There are . Schafer said the association arranges opportunities for caregivers to take the virtual dementia tours, and also offers tips on how to communicate with people who have Alzheimer’s or how to reduce their anxiety.
Donahoe said the best advice she has learned in caring for her mother is stop fighting against how her mother sees the world.
“Join their journey,” Donahoe said. “Don’t argue. Just love them.”
