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Illinois Chapter > Volunteer > Volunteer Spotlight
 
Alzheimer’s Association Community Representatives Spotlight

The work of AACRs is critical to achieving our vision of a world without Alzheimer’s disease. Read the stories of some of our Star AACRs below.

My name is Natasha White and I live on the Southside of Chicago. I have an 18-year-old daughter who is college bound in September this year, and I’m totally not ready for her to go. I absolutely love music, dancing and doing different and exciting things. My favorite color is blue and favorite artist of all time is Prince. I love writing poetry, helping people and learning new things. I am also a licensed massage therapist in Illinois and am working on building my relaxation and self-care business. I am very excited about venturing into entrepreneurship. I do perform relaxation techniques part-time and hope to build my own business so that I can provide complementary services to caregivers.

What led to your involvement with the Alzheimer’s Association and the ACCR program?
My personal experience with the disease started with my paternal grandmother. Although I had heard of Alzheimer’s disease before, I had never known anyone who battled with it. My father took great care of my grandmother, but it was challenging to see such a strong woman change so rapidly from what we knew her to be. I got to experience up close and personal what it meant to care for a loved one. When my mother was diagnosed with dementia, it was very difficult because I had no idea what to do and there were times I felt helpless. I did consult my father since he had some experience with caring for my grandmother. He shared some things with me, but I found that every person’s battle is different. I had to really adjust how I responded to my mom whenever she had an episode. She struggled with the idea that she had a problem, and I had to find ways to work around her losing her independence.

I did a lot of my own research so that I could find out more about the disease and how to care for my mom. Putting her in a nursing home was not an option. In the midst of caring for her, I suffered from sleep deprivation, chronic fatigue, depression, anger and a roller coaster of emotions, but I was determined to make sure my mom got what she needed. There were good and bad days, and the majority of the time I felt alone. This new experience dropped a huge bomb on me as well as my daughter, who as a teenager and had to deal with helping her mom care for a loved one. Both my daughter and myself grew in patience and persevered through this very difficult time. I learned a lot about POA (both financial and medical), the different stages of dementia, how to interact with someone with dementia and the different programs available to people with a debilitating disease.

Despite the challenges, I got to see a softer side of my mom I never got to see when I was growing up, as well as built relationships with family members that I had only been around but never really sat down and had a heart-to-heart conversation. From my maternal grandmother, I got the opportunity to learn some things about my mom that I never knew, which helped me to better understand and relate to her even though she was battling this disease. I cared for my mom up until her passing on November 16, 2012. It was extremely difficult to bear, but I knew she was in a better place. The same year she died was the very first time I had participated in the Walk to End Alzheimer’s. She was and continues to be my motivation for walking, and I will continue to walk until I can’t anymore.

What duties do you have as an ACCR?
I am a community and Alzheimer’s representative at health & wellness fairs and other informational fairs. I share pamphlets about the disease as well as ways people can help support the fight for a cure. I also talk to people at these events and sometimes share my story after listening to theirs.

Why did you choose to become an ACCR?
I chose to become an AACR because I feel it is important to share more about this disease and let people know that the Alzheimer’s Association has people who have experienced similar situations or experiences and can relate. I feel it is important to get the information out about what the Alzheimer’s Association has to offer and how they can help families provide the best care for their loved ones as well as understand what their loved ones need or how to respond to them. I know from experience that the information isn’t readily available and many physicians are too quick to provide medication but not education.

Why do you think others should join the ACCR program?
I think others should join because it is a great way to serve the community and learn about the disease. It is also an opportunity to hear real experiences and learn about other things are happening in your community, as well as a great way to help caregivers and those battling the disease.

Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.