A Kids-Eye View of Alzheimer's
Kids understand more than we give them credit for and are often wise beyond their years. In fact, when it comes to coping with Alzheimer's Disease, adults can learn some valuable lessons from them.
Twelve-year-old Taylor Lueckenotte grew up around Alzheimer's. In addition to having two grandparents with Alzheimer's, he often accompanied his mom to work at the Alzheimer's Assisted Living facility near their home in Texas, where she was executive director. Based on his experiences, he and his mother are working on a children's book about Alzheimer's disease.
The topic of kids and Alzheimer's gained national attention in 2009 when HBO, in conjunction with the National Institute on Aging, made a poignant documentary called "Grandpa, Do You Know Who I Am?" Narrated by Maria Shriver after her father was diagnosed with Alzheimer's, it tells the stories of five children, ages six to 15, coping with grandfathers or grandmothers suffering from Alzheimer's.
Here's what Taylor and the children in the documentary had to say about dealing with loved ones with dementia:
It's okay to be scared. Watching someone you love disappear before your eyes is scary, sad and frustrating. Whatever you're feeling is okay.
Don't take bad behavior personally. No matter how much a grandparent yells or gets mad, you should remember that the disease is causing the reaction—not you. "They're not acting like this because they don't care about you anymore," Taylor says. "If you take it personally, you'll end up hating your grandparent."
Remember the way they used to be. "I like to remember my grandma before she had Alzheimer's. When she could speak, and remember me, and hug me," Saralyn, 8, said in the documentary.
Act normal. When approaching a person with Alzheimer's, it's likely that you will know in a few seconds if they are lucid, or having an Alzheimer's moment. "I always assess the situation," Taylor said. "I don't try to avoid them. I just act normal."
Have fun. During his days at the assisted living home, Taylor enjoyed interacting with Alzheimer's residents on their good days. Sometimes he'd "just talk and hang out"; other times he'd look at old photos with them or they would tell him stories about their lives.
Be grateful for the time you have. Your loved one is still here with you; treasure the time you have left. "I wish Nanny would have never got Alzheimer's. It's changed her life and all of our lives. But as long as she's here, that's all that matters," Sarah, age 15.