I’ve thought about the possibilities for this post more than I have for my other Reading Challenge entries. Which was not unexpected; as my non-fiction pick, and one that I knew would deeply affect me, I envisioned this post to be different than those for works of fiction. There is really so much I want to say and so much I fear leaving out, so I hope you can trust that I’ve re-read, re-structured, and revised this at least one thousand times before it reaches your inbox, your WordPress reader, and other avenues of the internet. So I guess I will introduce my post with the following: Here are my incomplete notes, thoughts, reactions, and suggestions that came to be throughout my reading of Alzheimer’s in America: The Shriver Report™ on Women and Alzheimer’s.
First, a brief introduction to The Shriver Report™, for those of you who are unfamiliar with their work. From the website: “The Shriver Report is a comprehensive, multidisciplinary look at how American families live and work today, giving clear insight into one of the most important social trends of our time: the emergence of women into all areas of society.” Through academia, research, polling, partnerships, and more, this initiative works to spark research, debate, discussion, and policy change as familial structures and roles continue to evolve around us. A Woman’s Nation Takes on Alzheimer’s is one of three published reports, and it was reissued in the form of this book (you can – and should – read excerpts on the Alzheimer’s Association’s website. In her chapter, Maria Shriver talks generously and comprehensively about her knowledge and experience with the disease, which, like I just said, you can – and should – read here).
The format of the book is quite important, I think. Personal essays from people living with Alzheimer’s, people caring for someone living with Alzheimer’s, and doctors working in neurology and gerentology are intertwined with discussions about The Shriver Report™, general Alzheimer’s disease information, and many facts and figures about caregiving, societal impacts, and the disease itself (2010/2011). There are pictures of families and individuals who have been effected by this disease, which nicely supplement not only the essays, but the clinical and statistical information. It’s always important – no matter the disease – to remember the faces and the people who make up the stats.
I really want to talk about the essays that make up a large portion of the book. Another reason I enjoyed the format was because I sobbed during the essays, and was able to dry my eyes while I read the more technical information. Since I haven’t already, I will tell you that I didn’t choose this book for my Reading Challenge by chance. My paternal grandmother had dementia, and while I read the personal essays I found many of the same thoughts and feelings I felt (and feel) in front of me on the page; some that I have avoided and tried to confront in the three years since my grandmother passed away. From politicians and a former First Lady to a Nobel Prize winner and those with Alzheimer’s themselves, the essays bring home a relatable force behind the Association and the fight to end Alzheimer’s: Alzheimer’s does not discriminate.
That is the honest truth, and the reason I
sobbed am still sobbing as I look back on the essays in the book, is how honest the people who told them were with their stories. Like Kimberly Davis:
My husband and I are poster children for the Sandwich Generation, sandwiched between younger and older family members we have to take care of. And some days I resent it. I wish I didn’t have to say it’s OK for him to take the day off from work to watch his mom so his dad can get some relief. I wish I didn’t have to worry every time the phone rings late at night that his mom wandered away from the house and injured herself – again…Maybe it sounds selfish, but it’s true: I just want it to be easier.
How do we cope with these challenges? We talk about them. Well, it’s not always talking. I pout, I cry, I rage. But at the end of the day I get heard, which is exactly what I need to make it through another day, week, month. I listen to Todd and hear him, too. And this honest communication has brought us closer together.
and Mimi Steffen:
Four years ago, a the age of 78, I was diagnosed with early-stage Alzheimer’s disease. A death sentence? Eventually, yes. But not today or tomorrow. So once I got my breath back, I set my mind on two goals. One, I wouldn’t keep it a secret. And two, I would continue to live life to the fullest. I’m proud to say I’m accomplishing both.
and Barry Petersen:
Why the deepest, most gut-wrenching reactions from men? Because as shocking as the Alzheimer diagnosis is to any family, men are totally blindsided by the disease in their wives. It shakes who they are to the core. Men fool themselves into believing they can handle such a thing. While we so casually tell our women, I’d be lost without you,we are really unprepared to learn what that means.
and Lindsey Jordan, whose father was diagnosed with younger-onset Alzheimer’s when he was 51 years old. She was only 8:
When I was a child, Alzheimer’s meant my dad was sick. Now as a young woman, my knowledge of Alzheimer’s has led me to understand the harsh reality of this disease. My biggest sadness comes from knowing that this Alzheimer’s has already taken my dad from me. Although I know he will always be with me in my heart, the reality is that my father will never see me reach those special milestones in my life, and I will never get to see the love and pride on Dad’s face as I realize my dreams.
As for me, I find comfort in being an Alzheimer advocate. I participate in Alzheimer’s Association Memory Walk, give speeches and coordinate Alzheimer awareness events. I have had the opportunity to travel to Sacramento, California, and Washington, D.C., where I’ve shared my story with our elected officials and have asked for their continued support in the fight for a cure.
Among the multitude of perspectives and heart-wrenching testimony, and especially in the darkest of days, there is always a glimmer of something: hope. Chapter 2 of Alzheimer’s in America begins with a quote by Cardinal Leon Joseph Suenens:
Hope is not a dream, but a way of making dreams become reality.
Through shared stories, letters and advocacy messages directed towards legislators, Alzheimer’s has made its way to the priority lists of policymakers and medical researchers. The fight to end Alzheimer’s is gaining momentum, and I – along with many others – am sure that a cure is attainable.
So after you read Alzheimer’s in America, what can you do? Reach out to the Alzheimer’s Association for information about advocacy and volunteering. Reach out to a friend who cares for a loved one with Alzheimer’s, or one who cares for other people’s loved ones with Alzheimer’s. Participate in next year’s Longest Day fundraiser, or donate to the Walk to End Alzheimer’s. I have been a Walk Committee member for the past two years here in Maine, so reach out to me with your questions or thoughts about the book, the disease, or the Walk. We’re all in this together – let’s turn the dream of ending Alzheimer’s into a reality.
Learn more about my Walk to End Alzheimer’s Team and #WhyIWalk by clicking on the Alzheimer’s image on the right side of this page. And to find your local Association, as well as information about the disease, visit alz.org.