Madeline Nguyen, a second-year biochemistry student, has been involved in raising awareness for Alzheimer’s disease since high school. She said her passion for making a change and interest in research led her to join Youth Movement Against Alzheimer’s at UCLA. Her mother’s side of the family has a history of Alzheimer’s disease. “When my grandma was first diagnosed with Alzheimer’s, my mom had both of (my grandparents) move into the house together with us,” she said. Nguyen was only 7 years old at the time. Her grandpa was diagnosed later during her teenage years. She said her family is no stranger to the hardships of this neurodegenerative disease.
Nguyen’s grandmother died 10 years ago before her grandfather died last year. They were married for a long time, and Nguyen said her family wanted to bury him with his wife’s ring. However, Nguyen’s mother mistakenly placed the wrong ring, leaving the family with an invaluable memorial, she said.
Playing solitaire and other card games together is one of Nguyen’s favorite memories with her grandmother, who would teach her how to count in Vietnamese as they played. She described these memories as loving and happy ones that, even in the absence of past memories, allowed Nguyen to stay a part of her grandparents’ lives, she said. Nguyen added that even after being diagnosed with Alzheimer’s, her grandfather continued his routine of watering the garden and going for walks. Joining him in these activities are some of her favorite memory with her grandfather. “It’s not one big defining moment … I still felt like a part of their lives in those small ways,” she said.
“The hardest part is that it is a slow-happening thing. … You see parts of them slowly chip away,” Nguyen said. In their early stages, Alzheimer’s and dementia are mistaken by many simply as consequences of aging. “It was difficult seeing him be physically fine … but knowing that he was slowly losing a part of himself,” Nguyen said.
Kyle Citko, a fourth-year mathematics and economics student, said he experienced the disease when his grandmother was diagnosed with early onset Alzheimer’s in her late '50s. Citko said his grandmother loved solving crossword puzzles and playing Monopoly, which Citko also enjoyed. His favorite memory is of the two of them playing a long game of Monopoly that went on for multiple days. “It was just such a simple thing that we had so much fun with,” Citko said.
Citko joined YMAA two years ago because he believes it is important to raise awareness and increase funding for Alzheimer’s, he said. “I’d like to see more people understanding how big of an issue it is,” Citko said. As his grandmother’s condition progressed, Citko and his family moved her to a senior apartment complex. “Within 10 months of being there she couldn’t live on her own anymore, so we had to move her into an assisted living facility,” he said.
“It was difficult seeing her. … Eventually she stopped recognizing everybody except my dad … so it was hard to visit,” Citko said. He added his grandmother would often get distressed during these visits if she was having a bad day or could not remember her loved ones. Having herself seen her own grandmother go through Alzheimer’s, Citko' grandmother got really scared when she realized the same thing was happening to her, Citko said.
Citko said it was important to him to keep fond memories of his grandmother in mind to stay connected to her, even if she could not remember him.
Lorena Palattao, a first-year financial actuarial mathematics student, was 8 years old when her grandfather was diagnosed with Alzheimer’s disease. During her childhood, she said she would play the piano as he watched. At the time, Palattao did not fully understand the disease, but as she grew older she said she realized the full extent of it. She added it was difficult to watch her grandfather’s disease progress. “He knew he couldn’t remember things, and you could tell that it bothered him that he couldn’t remember things. … It was just hard knowing that he knew, and that he couldn’t do anything about it and neither could we,” she said.
Palattao said communication and maintaining a connection is difficult for both those with Alzheimer’s and their loved ones. “Remembering that there’s more to our relationship than ... memory and trying to switch to something that he does remember, that would always make it better. … There was a story that he could remember and that brought him joy,” she said.
Palattao said she her favorite memory with her grandfather is from Minnesota. “There was snow on the ground, but I wanted to go for a bike ride around the neighborhood,” she said. Her grandfather, despite having lived in the warmer climates of Guatemala and California, walked next to her as she rode her bike. Palattao said the memory brings her joy and makes her feel loved.
“It’s hard for them to know that people don’t understand them anymore. … Their relationship with people isn’t quite the same,” Palattao said. She said her grandfather would sometimes ask about her sister. “I don’t have a sister, but I’d try and go along with it,” she said. She added he could tell he said something wrong. As the disease progressed, she said he also forgot the names of her mother and grandmother. “It was really hard for them to pretend that it didn’t hurt them. … In the end, they are still the same person, even if there are times when they can’t remember who you are and what you are talking about,” Palattao said.