Voices of Hope – Inside Alzheimer’s
Seeing the world through a child’s eyes isn’t just an opportunity to see things the way they do. It’s an opportunity to experience a fresh perspective, even in the midst of life’s greatest challenges. On April 19, 2012 we released When Your Grandma Forgets, just four days after our first “Voice of Alzheimer’s” awareness event in Florida. It’s our fourth title in a growing series of Little Pink Books—created to touch the child inside each of us. The months leading up to this event were filled with creative brainstorming, planning sessions, community outreach, a wealth of support and finishing touches on our newest Little Pink Book.
Advocacy and emotional health are tremendously important to me. The topics I write about—cancer, deployment, Alzheimer’s—all have tremendous impact on the families in the midst of those journeys. When I introduce my work, I often hear one of two responses: “That’s depressing isn’t it?” or “A lot of people need that book!” What underlies both responses is hopelessness.
A sense of hopelessness is common in overwhelming situations. However, with a fresh perspective Huge Outcomes are Possible Everyday—that’s the potential of HOPE. Inspiring others through a child’s eyes affords everyone the capacity to make a difference. It transforms overwhelmed into learning, understanding and helping. That’s a blessing for families confronting life’s biggest challenges; gifting them with tremendous hope and love–the ultimate erasers for fear and doubt.
The inspiration for our “Voice of Alzheimer’s” event came to me while swimming. For me there’s something physical, mental and spiritual about immersing myself in water. Putting in earplugs shuts down a busy world. Praying downloads worries. Peacefulness ignites new ideas.
There in the silence, I thought about what Alzheimer’s disease takes away. My mother’s ability to multi-task suffered first. Then her mathematical and writing skills began failing. Reflection was one of her greatest strengths in writing poetry; that too has diminished. As I pushed through the water, stroke after stroke, more losses came to my mind. Then one brought me to the surface as tears filled my goggles: VOICE. What if Mom loses her voice…what if her ability to speak is stolen away? All at once, I knew I had to become a “Voice of Alzheimer’s,” beyond the pages of a book.
No one is capable of knowing exactly what late-stage Alzheimer’s patients would say if they could. Yet, hopelessness shouldn’t become the prevailing voice. By choosing to be a voice of Alzheimer’s, we can transform silence into hopeful advocacy and well-being. Inside When Your Grandma Forgets, we endeavored to transform hopelessness into hopefulness. Together, Bob and I wrote in honor of my mother, his wife and the millions of families confronting Alzheimer’s disease. Dr. Tariot, our foreword writer, affords families greater hope through ground-breaking research at The Banner Alzheimer’s Institute and abroad with clinical trials in Colombia.
Imagine the impact if everyone chose to use their Voice of Alzheimer’s to make a difference–each in their own way. That’s a great picture of how this work began. I read my co-author’s book, Life after Loss, in 1995 during a time of hopelessness in my own life. His words helped me redefine that loss and gain a fresh perspective. In 2010, I wrote Bob (for the very first time) requesting an endorsement for my 2nd Little Pink Book. That led to us co-writing When Your Grandma Forgets, and joining hands for “Voice of Alzheimer’s” events in two different cities on opposite sides of the map.
I frequently say that no good work is ever done alone. As you can see, our “Voice of Alzheimer’s” was no exception. In two and half years of hope-filled writing, speaking and traveling, this was our first fully sponsored event. Big thank you hugs to our generous community sponsors: Northwest Florida Regional Airport, Carington Manor, Wellington Place, Crystal Bay, Sterling House, Emerald Coast Hospice and Daybreak Senior Services.
There are also some background voices that make every book launch and event possible. Thanks to Derek, my graphic artist at 20/30north Studios. His stick-characters convey hope, humor and love inside extremely difficult journeys. Thanks to my husband Chuck, who has my back in everything I do. I’m grateful for Dr Mari who meticulously copy-edits every book. My family and friends encourage me with prayers and applause beyond imagination. I thank God for each of them.
June Deits, my co-author’s wife, is another voice making a difference. In the midst of confronting Alzheimer’s disease, she’s turning the silence she endures into advocacy by taking part in a clinical drug trial to eliminate the plaques inside her brain. My mother’s and June’s increasing silence, inspired me to create a Silent Art Auction as part of our Florida Voice of Alzheimer’s event. Oftentimes, art affords an outlet for complex emotions that might not otherwise be heard.
Remarkable support for our Silent Art Auction came from renowned artists like Denielle Harmon and Alice Weidenbusch. Contributions also came from art students of Middle Tennessee Christian School, who donated their time, resources, and creativity; they too became a Voice of Alzheimer’s. It all took place at Full Circle Gallery—a perfect fit to celebrate hopefulness.
Travel for our “Voice of Alzheimer’s” seminar in Arizona, was partially funded through our Florida Silent Art Auction. Delivering an awareness seminar with my co-author Bob and our foreword writer, Dr. Tariot was another tremendous blessing. This co-authored work merits a co-voice to highlight that seminar. I encourage you to read on, as Bob Deits adds his voice of hope and then view the gallery that follows.
More Voices of Hope – Inside Alzheimer’s
The thought of helping write a children’s book never crossed my mind until Maryann and I were talking about another of her Little Pink Books, “When Mom’s Cancer Doesn’t Go Away.” Somewhere during those conversations, the subject of doing a book for children about Alzheimer’s disease emerged. It was followed by the idea of trying to do the book together and “When Your Grandma Forgets” is the result.
In one sense there was a certain déjà vu to the experience. I did not set out in the late 70’s to become immersed in the field of loss and grief either. It was an encounter with Dr. Earl Grollman at a “Growing Through Loss” Conference at which we were both lecturing that changed my life for good. Earl cornered June, and the two of them cornered me to say I had to write a book about grief recovery. The first edition of Life after Loss was published in 1988. Twenty-four years, four more editions and seven foreign language translations later the book still sells and I still lead grief support groups.
During those years June often lectured with me and the new editions of the book have a chapter written by her. She called her lectures and the book chapter, “Quiet Losses,” meaning those experiences that are more difficult to share with others. By 2004 she was talking about a new challenge: the decline of her memory which they called Mild Cognitive Impairment. Within another two years she was diagnosed with early stage dementia that was probably Alzheimer’s. By 2009, she was enrolled in a research project at Banner Alzheimer’s Institute in Phoenix, testing a drug that might dissolve the amyloid plaque that is common with Alzheimer’s.
June can no longer lecture or even write her name. She needs help with the most basic functions of life. She knows who I am most of the time.
Caring for her has been an unwelcome college education in the realities and challenges of Alzheimer’s.
When June was lecturing she would often say, “When I had breast cancer I knew it was a formidable adversary that could kill me. But it was clearly defined and the way to attack it was easy to understand. Fighting Alzheimer’s is like trying to punch out a cloud.” It is a good description. June has attacked Alzheimer’s with all the energy and determination with which she defeated cancer. But as I see her “punch” it while there is nothing to strike, it swallows her a bit more. I am so glad that her quote and Derek Makekau’s great illustration are on the pages with the table of contents for When Grandma Forgets. Her “voice of Alzheimer’s” will not be lost, even if the time comes when she can no longer speak at all.
There are 5.4 million people like June in the United States, 97,000 in the state of Arizona where we live and 35,000,000 worldwide. It makes me realize that the battle to end this disease is way bigger than June and me, our adult children and grandchildren, Maryann’s mother, Dr. Pierre Tariot’s mother and those I visit in Memory Care facilities.
Fortunately, the end, if not in sight, isn’t far around the corner. New discoveries are emerging constantly. The drug June has received does indeed dissolve amyloid plaque and there are other drugs that do the same. Dr. Tariot is the leading researcher in a project to vaccinate young people among a group in Columbia with a very high rate of the disease, who get it at an early age.
Because she is among the pioneers in the forefront of the assault on Alzheimer’s, June will win again. She will successfully punch out this terrible disease whether or not she ever knows of her victory.
As Maryann says so well, “Huge outcomes are possible everyday.”
— Bob Deits