Today is World Alzheimer’s Day. Organizations and individuals are noting the day on their websites, and Facebook pages with purple logos, pictures of loved ones and articles.
Many list the facts and figures that are most commonly associated with Alzheimer’s Disease including 68 seconds someone in the US is diagnosed with AD and every 4 seconds worldwide. 115 million will have some form of dementia by 2050.
While the facts, especially the financial toll is alarming and should be a call to action for everyone, it is not.
With so much information available, the real stories are often lost in the quantity of information. It is about individual people: moms, dads, sons and daughters, family and friends. Individual people who spend the end of their lives in a no-man’s land of living in the moment, not knowing about the future or their past. While for most, they retain their identity, they have lost their connections.
For caregivers, they sometimes lose everything.
Society does not know how to deal with AD. The costs, the care logistics, the impact on families and the financial toll. But most of all, we don’t know how to deal with the individual who has the disease itself.
I know with my mom sometimes it was very uncomfortable. The time when she thought I was her husband or her boyfriend. The times to attend to her personal needs. The times when she asked the same questions hundreds of times during the same day. The time she asked me who I was …
But what I discover over the years was that all she really needed was a soft voice, a loving touch, a long hug – the same human contact we all crave. The best care was not to leave her but to bring her closer.
The AARP produced a 6 minute short film on my mom and me telling our story and my efforts to raise money and awareness for Alzheimer’s. My 7 Summits Climb for Alzheimer’s: Memories are Everything project is featured on My Generation, hosted by Leeza Gibbons in the Fall of 2012 on PBS channels across the US. My deep appreciation to the AARP for creating this film:
Alzheimer’s Disease International has published their annual report focusing on the stigma associated with AD for 2012.
This short video summarizes the report:
Books and Movies
I want to highlight two stories recently released revealing the personal impact of Alzheimer’s.
Martha Stettinius’ new book Inside the Dementia Epidemic: A Daughter’s Memoir takes us through her 7 year journey with her mother, Judy. She wrote the book real time and now shares the lessons she learned.
The movie Shattered Love is another deeply personal look at AD. This is the trailer
For me, tonight I will speak to a group of Alzheimer’s volunteers’ apply named AlzStars. The Alzheimer’s Association has a program to nurture volunteers wanting to use a sport or physical event to raise awareness and money. I will talk about my own efforts and the 7 Summits Climb for Alzheimer’s: Memories are Everything project.
Today is World Alzheimer’s Day – take a moment and make a new memory.
Memories are Everything