My mother believed in a simple philosophy: that if you could do something, you should do something.
If she heard of someone in trouble or a cause close to her heart, she would look at me and say “We should do something about this!” Or, and sometimes more often, “YOU should do something about this!”
My mother doesn’t say that anymore. She died this year from Early Onset Alzheimer’s disease, an aggressive form of the disease that usually strikes in your 40’s and 50’s.
When I think of what my mother went through, what millions of Alzheimer’s patients are still going through, I can once again see and hear her clearly, “Do something about this!”
But what can we do about Alzheimer’s disease?
Because my mother was so young, my family saw the full spectrum of Alzheimer’s, from beginning, to tragic end. I’ve said repeatedly, no one wants a front row seat to this illness.
Though it was a dark and difficult journey, I was awed and inspired by some amazing people — people who faced Alzheimer’s head on and decided to “do something” about it.
People like Dr. Daniel Potts and his wife Ellen Woodward Potts, who between them had a staggering 8 family members with Alzheimer’s or other dementias.
They could have buried these experiences, thought “why us?” and carried on with life worrying if they were next. And who would have blamed them?
Instead, the Potts did something. They wrote a book about the caregiving experience, A Pocket Guide for the Alzheimer’s Caregiver, sharing mistakes that were made and what they learned along the way.
Their book certainly helped my family; I would highly recommend it to others. By “doing something” the Potts provided a resource and much needed lifeline to millions of Alzheimer’s caregivers; all trying to navigate a disease that stumps many experts.
Berna Huebner saw Alzheimer’s in her mother, renowned Chicago artist Hilda Gorenstein, also known as Hilgos.
Deep in her Alzheimer’s, art became an unexpected therapy for Hilgos. She summed it up one day when she looked at her daughter Berna and said simply, “I remember better when I paint.”
That could have been the end of it, a poignant moment between mother and daughter.
But Berna Huebner realized – I can do something with this. So she co-directed a documentary, narrated by the legendary Olivia de Havilland, called I Remember Better When I Paint, to show caregivers how the arts may help us connect with Alzheimer’s patients and help them through their day.
There are so many others, like Melissa Pihos, daughter of pro-football Hall of Famer Pete Pihos. She watched helplessly as her hero, her Dad, slipped into the grips of Alzheimer’s, then died from the disease last year.
She had to do something, so she used her dance training to produce a live event, a dance and film production that honors her father while raising Alzheimer’s awareness.
Pihos: A Moving Biography now tours the country raising not just awareness, but funds for the Alzheimer’s Association. A show has just been scheduled for Texas next November. That is definitely a woman who is “doing something”!
I learned from these great examples that all of us in the Alzheimer’s community can “do something” by using just what we have at our fingertips.
No one epitomizes that more than Theresa Mackin. Watching her mother struggle with Alzheimer’s in a nursing home, the Boston woman thought, “How can I do something about this?”
She had an iPhone at her fingertips, so she took to Twitter, tweeting her Mom’s frank and candid comments to illustrate what a day in the life of Alzheimer’s is like. Follow @MaryAgnesKelley and I promise her daily observations will make you laugh, and sometimes cry.
So many people will say, “If only I was Oprah I’d fund a special center for caregivers” or “I’d donate so much money for research they’d certainly find a cure!”
Well just because you can’t do it on Oprah’s scale doesn’t mean you can’t do something. Go ahead and live on your own scale! If you can donate a dollar, do it. If you can help one caregiver, do it. Do something.
When Samantha Howe’s mother was diagnosed with Alzheimer’s she turned her love of running into an international Alzheimer’s awareness campaign, “Running for Alzheimer’s.”
The Irish woman competes in events from Dublin to the US. She recently completed the Boston Marathon, now she’s training for the New York City marathon in November, raising Alzheimer’s awareness with every step.
You may never be able to run like Samantha, but maybe you can walk! This fall, the Alzheimer’s Association is raising awareness and funds with the “Walk to End Alzheimer’s.”
I started a family team and we’ll be walking this November. It’s not a film, or a book, but it’s something.
Donations help the Alzheimer’s Association fund care and support programs, and research for a cure. It’s easy to contact your local chapter and sign up for a walk in your area.
If you can speak up, share your Alzheimer’s story. It will help educate people about the disease, help reduce stigma, and my Dad will tell you first hand, sharing your story will help someone else on their Alzheimer’s journey.
If you have caregiver experience, volunteer for a caregiver support group. Or volunteer at your local memory center or senior center. Do something.
Since my mother died, I’m often reminded of this quote: “I kept thinking – somebody should do something about this! Then I realized – I am somebody.”
I’m trying to do something to end Alzheimer’s. Will you join me?