My grandmother was diagnosed with Alzheimer’s disease when I was 4 years old. (I am now 9 years old). I wanted to help care for her, so my mom gave me easy puzzles to solve with my Grandma. I felt like I was doing a good thing because when we worked on puzzles we were both very happy. As the years went by, I learned about different ways of helping my grandmother. For example, “Go into her world.” My grandfather passed away, but Grandma asked me, “When will Grandpa come home from work?” If I told her the truth she would be very sad to hear that her husband had died. She would probably cry and then a few minutes later ask the same question. I would have to keep repeating upsetting news to her over and over. Instead, I just told Grandma that “Grandpa will be home from work at 5 PM.” Grandma would smile and then we would do a coloring activity.
My mom wanted me to meet other kids who have a loved one with Alzheimer’s disease. My mom knew there had to be other kids out there, but it was hard to find them. So we decided to start a support group for kids who are helping to care for a loved one with Alzheimer’s. We call the group “Kid Caregivers.” The blog has tips and ideas based on my personal experiences with my grandmother. We have readers from all over the world including: Sri Lanka, Egypt, Kenya, India, Malta and Russia to name a few. Alzheimer’s is universal and affects people from all over the world. I am glad that other children can learn about different ways to care for their loved ones and not feel alone (like I did!).
Also, I am meeting with other children in person. At my grandmother’s nursing home, the Recreation Director has my contact information so I can talk to other children about Alzheimer’s and offer support. I have given speeches at my school and Girl Scout troop. The Hasbro Toy Corporation even heard about my endeavors and awarded me the Hasbro Community Action Heroes Award.
I have a lot of plans for the future. I plan to continue working with Alzheimer's patients. Through the organization PuzzlestoRemember I am helping distributing puzzles to dementia patients all over the country. I want to include iPod nanos with music from the 1930’s-1940's that seniors enjoyed when they were younger. I will get big headphones so hearing-impaired seniors will be immersed in music! Last, but not least, the AMAZING Hasbro JOY FOR ALL pets will be part of my kids’ group. I am already talking to three Girl Scout groups that will accompany me to nursing homes to: do puzzle-solving and collecting, use iPod nanos with the seniors, and share the JOY FOR ALL pets. We want EVERY nursing home in the New York City area to have a JOY FOR ALL pet!
For my Kid Caregivers support group, I will continue sharing tips and offering support for kids around the world who help care for senior family members. I am writing a photo-essay book which has all my tips and experiences. My book is by a kid and for kids! I plan to speak at many schools. I also want to work for my local Alzheimer's-serving agency in their outreach program! Lastly, I am working on a special device that alerts people with Alzheimer’s so they do not fall.
Alzheimer’s disease is terrible. But life with the disease can be better if shared with loved ones. People with Alzheimer’s can hug, smile, look at pictures and solve puzzles. Spend time with the person you love, share activities together, the rules do not matter. Have fun, that is what I do with Grandma!