For Neal Desai and Peter Tsatalis, the awareness came around age 10.
Neal’s grandfather Krishna Ji Desai had Alzheimer’s disease and he and his wife moved in with Neal’s family. “I was a very curious person, so I would always try to stay connected to him,” Neal said. “My parents tried to keep me as innocent as they could, but my parents did tell me the hard facts,” he said. “‘Your grandfather has this brain disease and he is dying from it.’”
When someone has Alzheimer’s, it affects the entire family – including children and grandchildren. With 83 percent of unpaid care provided by family members or friends, kids and teens are often exposed to the emotional ups and downs, the stress and sometimes frustration that Alzheimer’s caregivers exhibit.
The Alzheimer’s Association recommends that adults talk with youth about the disease, encourage teens to ask questions and then provide honest answers about the disease and the progression of symptoms. Seeing a grandparent who no longer remembers your name can be traumatic.
Warren Riffle, an Alzheimer’s Association Miami Valley Chapter volunteer, recently talked about Alzheimer’s disease in a psychology class at Horizon Science Academy Dayton. “I didn’t know what to expect when I went in…a lot of them were very interested in the genetic component ‘if grandmother had it will they get it?’”
Alzheimer’s disease, which is a fatal brain disease, is the sixth leading cause of death and it cannot be prevented, cured or even slowed. Currently 5.8 million Americans live with the disease, which is characterized by losses in judgment, orientation and the inability to understand and communicate effectively.
Leo Zhang, a junior at Centerville High School, said, everybody experiences not being able to put their words together sometimes. But if he put himself in the shoes of someone with the disease, “I think I would feel really isolated, like lonely at the same time. In the Chinese culture we really don’t try to ask others for help…I wouldn’t want to burden others.”
Both of Peter Tsatalis’ grandmothers live in Philadelphia. His maternal grandmother has been diagnosed with Alzheimer’s disease. His paternal grandmother is showing signs of memory loss. “That’s been a challenge,” said Peter, who is a junior at Centerville High School. “My grandmother on my mom’s side of the family had early stages of Alzheimer’s. She fell one day in the bathroom and hit her head…finding caregivers has been more of a challenge.”
Since then, his maternal grandmother, Elizabeth Limberakis, has been moved to a nursing home. “My mom was sad to say the least.”
“In the Greek culture, family is really important and we love each other. Mom is always calling her mother to make sure everything is good. I will come home from school and just call my grandparents and talk with them,” Peter said. “ We love our family and it’s difficult to see someone change and face struggles that they shouldn’t have to and change from their usual self.”
Statistics show that currently there are 250,000 children, between the ages of 8 -18, who provide care for someone with the disease. Both of Kim Willis’ parents had Alzheimer’s disease. Her father died in 2018. Her mother, Lorna Long, is still living with the disease. Willis said she involved her son Matthew Willis in the care of her father, “because he was compassionate, and it helped him understand what he was going through.”
Matthew said he used to help push his grandfather around in his wheelchair at his grandfather’s apartment and he would help his mother prepare his grandfather’s food. “Just being there for my mom was good because I am sure it would have been hard for her to do those things alone.”
Kim Willis, who is a volunteer for the Alzheimer’s Association Miami Valley Chapter, has included Matthew in all of her Alzheimer’s volunteer activities. He has volunteered at the Alzheimer’s Association office, participated in the Walk to End Alzheimer’s, attended Ohio Advocacy Day at the statehouse and volunteered at other local Alzheimer’s events.
A senior at Chaminade Julienne High School, his senior project is on Alzheimer’s disease. Kim Willis said she is glad she has exposed her son Matt to the disease because one day “he may be in the same situation I was in,” having to care for his parents.