Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, June 8, 2016

Meet Maria Shriver, Blogger, Alzheimer's Advocate, Producer, Author



We Can Handle the Truth: The Facts on Alzheimer’s
During the time it takes for you to read this piece, try to put your denial impulse aside and take a hard look at the truth about Alzheimer’s. Because the fear that causes you to deny things — like our risk of getting this mind-blowing disease — can actually be the motivator you need to stop ignoring the facts and join me in doing something about it.
So here’s the truth: Our WebMD and Shriver Report Snapshot: Insight into Alzheimer’s Attitudes and Behaviors, revealed that almost all of us (96 percent) have heard of Alzheimer’s disease ... so we can no longer deny that it exists. Nearly four in five of us know, or have known, someone that has been diagnosed with it, which tells us that the vast majority of us not only know about it, they actually have experience with someone who has had or is living with Alzheimer’s.
But even with all of that first-hand experience, we aren’t doing much about it. Although 67 percent of people say they would actually like to know their risk for getting Alzheimer’s disease, when offered a list of ways to do that, more than one in four say they wouldn’t do any of them. Although two-thirds acknowledge that an Alzheimer’s diagnosis would cause their family great financial harm, nearly half say they have never considered the financial implications if they, or someone in their family, were to get the disease.
We know the risks and the reality, but we are in denial and unprepared as a nation to deal with it.
Why are Americans choosing to turn off and tune out when the risk-filled, pocket-emptying truth is right in front of us? Because denial is a protective mechanism. It keeps you safe until you are ready to handle the truth.
I have been fighting on the frontlines of Alzheimer’s since my own father was diagnosed with the disease in 2003. I get denial. Like millions of others I first denied what was happening to him. Then, I got scared. But after that, I got busy. I wrote What’s Happening to Grandpa, executive produced The Alzheimer’s Project on HBO and the Oscar-award winning Still Alice, produced The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, testified before congress, created The Women’s Alzheimer’s Challenge and created a place for anyone connected to the disease to share their own personal stories of Alzheimer’s and Caregiving on MariaShriver.com and this May launched Move for Minds and —all of which I have done with the goal of starting a conversation and getting people to act. Fighting this disease gave me the drive to push through my fear and land in a place of hope.
What am I hopeful about? I am hopeful about the exciting research that is happening in labs across the globe. Some of the world’s best and brightest are looking for a cure everyday, some even say they’re getting closer — as the new cover of Time magazine implies.
But until a “miracle” drug is found, let’s not deny that someone in this country gets Alzheimer’s every 67 seconds. Let’s not refuse to act because there is no cure. There is no cure for cancer and still there are millions of people fighting it every single day. We need to fight the fear our denial is protecting us from and find the hope. Hope will allow us to accept the truth — that as many as 16 million people could have this disease by 2050 — and act on it.
I am hopeful that people now understand the connection between cardiovascular health and brain health. I am hopeful about the cutting-edge research that is showing a relationship between the foods we eat and their impact on our brain. I am hopeful that people are getting the message that our brains and our bodies are connected and what is good for our bodies is also good for our brains.
I am hopeful about companies like WebMD, Equinox, Vimmia and so many more, that are joining us in this fight. The truth is that getting educated, getting empowered and getting engaged is the way to stop the fear and find the hope.
I am hopeful that children of Boomers who might suspect that their parents are struggling with memory will get them to a doctor earlier because they are now more aware of what Alzheimer’s is and isn’t. If you’re wondering what the early signs are, just this week, the Alzheimer’s Association listed them for you. The fact is, every day 10,000 Baby Boomers turn 65. The time you waste denying that someone you love might have Alzheimer’s is time wasted getting them into a clinical trial or getting a new drug that could slow its progression. When I speak to anyone connected to this disease, one of the biggest regrets they have is the time they spent in denial. There’s so much shame around Alzheimer’s but the truth is you can sit down and have a conversation with your spouse, your parents your loved ones about what they would want to do if Alzheimer’s showed up at your door today. Those who plan do better.
And I’m hopeful that women — the economic engine of this country — will join me in this fight because the vast majority of people diagnosed with Alzheimer’s are women. In fact, as The Shriver Report first reported, a woman in her early 60s is twice as likely to develop Alzheimer’s as she is breast cancer over the remainder of her life. Which is why I am excited about the mobilization of women through The Women’s Alzheimer’s Challenge — we’re raising money to fund research on women’s brains to get the answer. And we won’t stop until we do.
In fact, I am excited about all of the people who are engaged in this fight — spouses, children, political leaders. I am thrilled that the federal government just increased the amount of money devoted exclusively to Alzheimer’s research. It’s still not enough.
In an election cycle where it seems like we have nothing in common, one thing we all DO have in common is that we all have brains. And I haven’t met a person who isn’t terrified of losing theirs. So let’s brainstorm.
They say the truth can set you free. The truth about what Alzheimer’s is and isn’t and what we can and cannot do can set us free as a nation. I have faith in our country and I know we can handle the truth and be brave enough to use our fear to propel us into action.
The best way to break through denial is to challenge it. We have the facts, we have the figures. And we have the fight. Let’s go and face it together.




A modified version of this piece appeared on MariaShriver.com.

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