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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Face of Alzheimer’s

An Alzheimer’s Anthem: Remember Me

24 Saturday Jan 2015

Posted by Ann Napoletan in Advocacy and Awareness, Cure Alzheimer's Fund, Events, Face of Alzheimer's, Fundraising, Inspiration, Mom, Music and Art, Research, Ruminations

≈ 1 Comment

Tags

#rememberme, alzheimers, alzheimers song, chris mann, cure alzheimers fund, dementia, remember me, rudy tanzi

#remembermeWhile there are plenty of things that stir my emotions, music can really send me into a tailspin. I still haven’t listened to the Glen Campbell song, I’ll Be Me. One day I will, but I’m not ready yet.

Over the past day or so, I’ve seen a couple of Facebook posts regarding a new song and video by Chris Mann, a 2012 finalist on The Voice.

Remember Me is the result of a collaboration between Mann and a rather unlikely suspect, world-renowned Alzheimer’s researcher, neuroscientist Rudy Tanzi.

A recent Rolling Stone article describes how the two met and what inspired the partnership. (Call me crazy, but I feel as though this could be a game changer with regard to bringing Alzheimer’s out of the shadows! Who could have imagined uttering the words “Rolling Stone” and “Alzheimer’s” in the same sentence?)

Tonight as I was driving home, I shook off my apprehension and clicked the play button to listen to this remarkably powerful song for the first time. Within seconds, I found myself sobbing – it’s difficult to describe the raw emotion I felt as the beautiful lyrics cut into my heart. A rush of piercing grief, intense regret, and tremendous loss washed over me – body and soul. It took my breath away in every sense of the word. I couldn’t help but imagine my mom…

I know there’ll come a day, when I have gone away / And the memory of me will fade / But darling think of me, and who I use to be / And I’ll be right there with you again / I hope I’m one thing worth not forgetting / Tell me that you’ll never let me go

You can watch the poignant Remember Me video below, but please click over to iTunes and buy the single, then encourage your friends to do the same. A portion of proceeds will benefit the Cure Alzheimer’s Fund.*

 

Join the #RememberMe movement. Learn more -> here

*Since its inception in 2004, the Cure Alzheimer’s Fund (a 501(c)(3) nonprofit organization) has contributed $27.4 million to research. The founders cover all overhead expenses, and 100% of donations go directly to research. Dr. Rudy Tanzi is a key member of the organization’s research consortium.

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Alzheimer’s: Heartbreak, Helplessness, and a Lesson in Balance

11 Sunday Jan 2015

Posted by Ann Napoletan in Caregivers, Early Onset, Face of Alzheimer's, Life After Caregiving, Mom, Ruminations

≈ 3 Comments

Tags

alzheimers, dementia, early onset alzheimers, younger onset alzheimers

I do a great deal of reading about Alzheimer’s and other forms of dementia. Personal stories, books, blogs, the latest news from the world of research, and of course, what our friends in Washington are up to.

Every now and then, I stumble upon something that touches me more deeply than usual. This recently published Huffington Post piece by Rebecca Emily Darling fell into that category – and then some.

Beyond Her Years

The writer captures the experience of slowly losing one’s mother to this dreaded disease with an eloquence and wisdom far beyond her years. I was in my early 40’s when my mom was diagnosed, though she began showing signs much earlier. I feel as though I was robbed of so many years of making memories: traveling, holiday traditions, laughter, an impromptu dinner or shopping date, or simply being able to sit and have a conversation. We forget how much of a gift that is – nothing more than a conversation with someone so trusted and loved.

Rebecca Emily Darling, Source: Huffington Post

Rebecca was just 26-years-old when her mother was diagnosed. I can’t fathom it. My own daughter is a few months shy of 30, and I can’t imagine her having to carry such a heavy load at that age. Unfortunately, it’s becoming increasingly common.

The latest numbers I’ve seen indicate there are as many as 400,000 Americans suffering from younger onset dementia and even that is likely to be grossly understated for many reasons, not the least of which are fear and shame. That, however, is a topic for another post.

Below, I’m sharing several passages that I found particularly poignant and eerily familiar. This is an essay you don’t want to miss. You can read the full piece by Rebecca Emily Darling by clicking here.

Helplessness

“One night, my mother fell down the stairs and I ran to her. I held her like a mother holds a child and asked again and again if she was okay. I clutched her to me and rocked her. I felt completely responsible for her and more protective of her than I have ever felt of anyone; just the very idea of her being in pain cut through me. I would do anything to make it better. I would do anything to make my mother better. I would even give her up as my mother if it meant she would be living her life as herself, even if it was without me, even if it was somewhere where I could not see her. I would do anything.”

Heartbreak in Slow Motion

“I am accustomed now to having a mother with Alzheimer’s. I am accustomed to not having a mother on whom I can depend, in whom I may confide, with whom I may simply converse. And when I think of how accustomed I am, my heart breaks all over again. It is a constant ebb and flow, a constant healing and breaking again like the ocean.”

Moments of Joy

“If I have learned one thing from my mother’s disease, it is that the heart has no limit to what it can feel. There is always a deeper love, and always a truer pain. And when I see my mother’s eyes light up at the sight of a simple flower or a chocolate chip cookie, I know that there is always a purer joy as well.” 

Striking a Balance

In 2014, I took a new job that brought me much closer to what I believe is my life purpose; however, it also reduced my earning power substantially. Do I have any regrets? Not one.

Where am I going with this, you might ask. Well, this year, I’ll celebrate my 50th birthday, and my daughter her 30th. We’ll spend two weeks in Italy to mark these milestones. We’ve planned this for at least five years, maybe more.

Mom, Retirement Dinner 1998

Should I spend the money for this trip right now? Probably not. But I’m going to do it because I don’t know what the future holds. My mom retired before she turned 62, having worked hard, saved well, and done everything according to the book. She dreamed of two trips; one was Alaska, the other was Italy. Because of Alzheimer’s, she didn’t take either.

Life is short, my friends. Plan ahead, of course, but strike a balance. Live as though tomorrow isn’t promised, because the fact is, today is the only sure thing.

Thank you, Rebecca, for sharing this beautiful essay that touched me more deeply than you know.

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WomenAgainstAlzheimer’s Launches Shadow Box Memory Project!

28 Tuesday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Life After Caregiving, Mom, November-National ALZ Awareness Month, USAgainstAlzheimer's, Washington

≈ 2 Comments

Tags

alzheimers, alzheimers awareness, dementia, shadow box memory project, usagainstalzheimers, womenagainstalzheimers

Last month, I had the pleasure of attending the WomenAgainstAlzheimer’s Out of the Shadows Summit held in Washington, DC. While there were many memorable moments over those two days, one of the highlights was our evening at the National Museum of Women in the Arts.  That night, the WomenAgainstAlzheimer’s (WA2) Network launched its Shadow Box Memory Project.

Photo Credit: WomenAgainstAlzheimer’s

Prior to the Summit, attendees were invited to create shadow boxes containing pictures and memorabilia honoring loved ones affected by Alzheimer’s disease. Each shadow box was as unique and beautiful as the person that inspired it. Seeing the display was a powerful, moving reminder of why we are determined to keep fighting until we stop Alzheimer’s in its tracks.

Now WomenAgainstAlzheimer’s wants to know what you think about expanding this project, creating a national campaign to raise awareness about the disease – much like the AIDS Quilt did for AIDS. Did you know the quilt boasts an impressive 48,000 panels and a nomination for the Nobel Peace Prize??!

As we prepare to mark the beginning of National Alzheimer’s Awareness Month, please take 2-3 minutes to respond to this brief survey. Your feedback is very valuable to WomenAgainstAlzheimer’s, and your time and opinions are truly appreciated.

Click here to take the survey:  https://www.surveymonkey.com/s/GLLXNHK

Thank you so much and feel free to share this with others who have been touched by Alzheimer’s. Together we can and will make a difference!

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Marilyn, BA (before Alzheimer's)

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