Happy Birthday, Mom….

12 Sunday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Grieving, Inspiration, Life After Caregiving, Mom, Ruminations, Smiles

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alzheimers, dementia, grief, grieving

Dear Mom,

Happy Birthday! I trust there were lots of laughs and plenty of cake in Heaven as it must have been a celebration unlike anything we could have pulled off here. Your parents, Aunt Shirley, Aunt Helen and Uncle George, and so many others who love you.

We celebrated you by doing things you would have enjoyed this weekend, but I guess you already know that. If I’m not mistaken, I looked up on Saturday and saw you smiling down on us. It was likely the most beautiful weekend of October, two gorgeous days strung together. Nothing but sunshine and blue skies. Another tribute to your beautiful life, no doubt.

You are missed by so many people, and I heard from a few of your favorites today. It was nice to know so many friends were thinking of you – and us – all weekend. It just underscores the impact you had on so many lives, and my heart sings to know your legacy lives on.

It helps to think of you as you are today; whole, healthy, laughing, talking, and free of the torment Alzheimer’s often brought you. But, I’ll be very honest – I’m pissed. Furious that this disease took you much, much too soon. Today you would have been 78, and before AD stormed into our lives I would have imagined us traveling and enjoying life – you still in great health at this age. Damn Alzheimer’s for turning my plan – and our world – upside down.

The fact is, it would be so easy to sit and cry every single day about what we’ve all lost and how unfair it is. Although the excruciating, knife-through-the-heart pain of those initial weeks and months following your death has faded, I think I miss you now more than ever. So many life changes and countless moments where I’ve thought, “I wish I could talk to mom.”

Gone too soon, in more ways than one.

Each day, I try to live in a way that honors your life and makes you proud… I hope you know that despite your physical absence, you are still the guiding light in my life. Tonight, I lit your candle, and just as its flame stands tall and bright, so does your beautiful memory, unwavering strength, and enduring love.

With all my love,

Ann 💜

Allan Vann: 3 Steps to Fight Alzheimer’s

03 Friday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Inspiration, NAPA, USAgainstAlzheimer's

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#endalz, Alzheimers advocacy, alzheimers awareness, dementia awareness, ending Alzheimers, NAPA

Allan This morning, I came across one of the best articles I’ve seen in awhile. I was literally cheering on the inside as I hung on each word! In this piece, caregiver, blogger, and advocate Allan Vann adapted remarks recently made at a hearing sponsored by Congressman Steve Israel, D-NY (see below for more information).

You can find the article, 3 Steps to Fight Alzheimer’s, here. Please read and share widely. Let’s shout from the rooftop about what is needed to end Alzheimer’s!

For more from Allan, check out his blog at: http://www.allansvann.blogspot.com

The source of the following was: http://www.allansvann.blogspot.com/2014/10/3-steps-to-fight-alzheimers.html

The Alzheimer’s Solutions Summit, an intergovernmental hearing, was held on July 1, 2014 at the Long Island Alzheimer’s Foundation. The hearing was initiated and chaired by Congressman Steve Israel (D-NY), co-hosted with State Senator Jack Martins (R-NY) and Assemblyman Charles Lavine (D-NY). I was invited by Congressman Israel to testify as part of a caregiver panel. In my allotted 5 minutes I discussed three major issues from my caregiver’s perspective. Following that hearing, I submitted my remarks for consideration as a blog posting on the website of USAgainstAlzheimer’s, a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity, and voter education. -Allan Vann

A Must See Film: The Genius of Marian

03 Sunday Aug 2014

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Films, Fundraising, Helpful Resources, Inspiration, Ruminations, Smiles

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alzheimers, dementia, early onset alzheimers, the genius of marian, younger onset alzheimers

Last week, we held a special 1-night only screening of The Genius of Marian here in Columbus.

This film is absolutely brilliant in both its simplicity and its layers of complexity. Banker White told his family’s story masterfully in this documentary that follows his spirited mother’s journey from shortly after her Alzheimer’s diagnosis through the ensuing years.

During the course of the movie, we see a decline that no doubt mirrors the decline many of us have witnessed in our own loved ones. In a particularly moving scene, Pam White struggles to put on her coat before finally giving up. Such a simple, yet impossible task. This is the face of Alzheimer’s.

Pam was just 61-years-old when she was diagnosed. A beautiful woman who had it all – the antithesis of the stereotypical person living with dementia. The Genius of Marian puts forth such a critical message: Alzheimer’s is not just a disease of the elderly. No. It’s striking youthful, vibrant individuals in the prime of life and something must be done to stop it.

If you’re interested in bringing The Genius of Marian to a theater in your town, visit http://www.tugg.com/titles/the-genius-of-marian for details. The process is easy and serves as a wonderful way to raise awareness while earning money for an Alzheimer’s organization of your choosing.

The film will also be shown on PBS in September (http://www.pbs.org/pov/geniusofmarian/), and the DVD, due out in November, is available for pre-order now (http://geniusofmarian.portmerch.com/stores/product.php?productid=19086&cat=0&page=1&featured).

Watching Pam’s journey will make you laugh and cry. This is a woman who never lost her indomitable spirit or sense of humor. Much like my own mother, a woman of great strength, and while Alzheimer’s does its best to steal everything from these women, they fight like hell, never completely losing the core of their being.