Over 35 million people worldwide struggle with Alzheimer’s or some other form of dementia, according to the World Health Organization (WHO).
Yet, despite the prevalence of Alzheimer’s, there’s still a powerful, stigma-fueled taboo attached to the disease.
In the minds of most, Alzheimer’s is a slow death sentence that gradually morphs a vibrant human being into a pitiable shell of their former selves—a zombie-like figure, sitting in a chair and staring out the window. Those with the disease hesitate to divulge their diagnosis to friends (and even family), for fear of being subjected to unintentional prejudice and isolation.
But the only individuals who really understand what life with Alzheimer’s is really like are those who are living with the disease—the patients, and their family members.
A few of these incredible men and women have decided to share their real-life experiences in Fade to Blank: Life Inside Alzheimer‘s, a story that explores the human side of Alzheimer’s through the eyes of three different families. Their hope is that, by offering their insights, the world will gain a better understanding of the truths of the disease.
Here are just a few of the illuminating things they have to say about their battle with Alzheimer’s:
- “It was like a weight lifted off my shoulders.“ Rick Phelps, diagnosed with Early-Onset Alzheimer’s Disease at age 57, discussing how he felt after his neurologist informed him of the truth of his condition.
- “I live it one day at a time.“ Phyllis June Phelps, wife of Rick, on how she handles the reality of her husband’s disease.
- “What’s happened with my telling people about my Alzheimer’s has been an incredible deepening of relationships.“ David Hilfiker, remarking on how going public with his diagnosis has been so beneficial to both him and his loved ones.
- “I just hope I’ll never become so embattled as to lose my love.” Marja Hilfiker, David’s wife, on facing an uncertain future of caring for her husband as his cognitive capacity declines.
- “My perception has changed a lot since Mom was diagnosed. I always thought of an old person, in a wheelchair, staring out the window.” Michele DeSocio, talking about how much she’s learned about the truths of Alzheimer’s while caring for her mother, Jean.
- “Today is the best day I could ever have.“ Rick offers his philosophy on making the most out of each day.
- “You can’t pretend it’s not there.“ Phyllis June on why denying the existence of Alzheimer’s is unproductive.
- “It’s very painful to look at this woman you love and to know what’s coming for her” David’s biggest fear is the impact his disease will have on his wife’s life.
- “It didn’t feel like the disaster that we had always considered it.“ Marja was surprised by how she and David were able to accept his diagnosis and make a plan for the future.
- “It’s a terrible disease, but there’s a lot of good left in life. You’ve got to learn to adjust to their world.” Michele on how she has learned to find the light inside the darkness while dealing with her mother’s disease.
To take a journey with Rick, Phyllis June, Michele, Jean, David and Marja as they navigate the uncertain world of Alzheimer’s disease, visit www.fadetoblank.org.