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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: Alzheimers advocacy

Giving Thanks…

30 Sunday Nov 2014

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, God Winks, Holidays, Hospice, Inspiration, Life After Caregiving, Mom, Quotes, Ruminations, USAgainstAlzheimer's

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alzheimers, Alzheimers advocacy, caregivers, caregiving, dementia, gratitude, thanksgiving

IMG_3830-beattieThe arrival of the holidays brings a flood of competing emotions for me. Exactly two years ago today, we brought hospice on board. It was a time of both despair and relief; things were changing moment to moment, and we had reached a whole new level of helplessness and desperation.

No matter how hard we fought, it seemed as though Alzheimer’s might be winning. Engaging compassionate hospice professionals brought a measure of comfort to a very uncomfortable situation – comfort in knowing we were surrounded by angels who were not only knowledgable, but also caring and empathetic. They were “all in” from the moment they arrived, and I felt like we were the most important family in the world to them.

Two years ago, we still held onto hope that with the intensive support, loving care, and indisputable expertise of hospice, mom might rebound one more time. However, that wasn’t meant to be. So, Thanksgiving remains a powerful, heart wrenching reminder of those final few weeks…

But this is also a time to reflect on the many blessings that have enriched my life over the past year. First and foremost, of course, are my family, faith, friends, and health. Without these, none of the rest would be possible.

I’m incredibly grateful for the opportunity to touch and be touched by so many caregivers and advocates through this blog, my Facebook page, the USAgainstAlzheimer’s Support Group, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.

I’m grateful to have attended the WomenAgainstAlzheimer’s Out of the Shadows Summit this fall in Washington, DC, to be a founding member of ClergyAgainstAlzheimer’s and a contributor to the group’s first book, Seasons of Caring (December 2014). I’m thankful to have been a member of the steering committee for our local Walk to End Alzheimer’s and for the friends and supporters that generously contributed to our team, Marilyn’s Mighty Memory Makers.

I’ve crossed paths with some of the most passionate, inspiring people on the planet and been presented with countless opportunities to make a difference over the past year. I took a leap of faith, leaving the company I’d been with for almost 27 years, to join an organization with a strong mission I believe in. Five months later, I can say with confidence it was the right move and I’m finally where I was meant to be. For those things, I’m grateful.

I’m thankful I have been able to keep my mom’s memory alive, and that her spirit shines brightly on the world every single day. I’m thankful she’s still teaching me new lessons, inspiring me, and that she continues to touch thousands of lives. And I’m thankful to feel her presence on a regular basis.

To say I’m blessed is an understatement, but oh how I miss my mama.

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Upcoming Event: Creating Dementia Friendly Communities with Olivia Mastry

11 Tuesday Nov 2014

Posted by Ann Napoletan in Advocacy and Awareness, Events, Helpful Resources, November-National ALZ Awareness Month, Tips, USAgainstAlzheimer's

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Tags

alzheimers, Alzheimers advocacy, alzheimers awareness, dementia, dementia friendly, national alzheimers awareness month

Olivia Mastry and ACT on Alzheimer’s have established dementia-friendly environments in 32 different communities in Minnesota.

In the next Alzheimer’s Talks call presented by USAgainstAlzheimer’s, we’ll learn more about the power of dementia-friendly communities and how to use the Minnesota model to create dementia-friendly environments in communities nationwide.

Olivia will answer questions and share her recommendations, including lessons learned and a toolkit with concrete steps in developing a plan.

Register today for the call on November 18th, from 3-4pm ET.

http://actions.usagainstalzheimers.org/p/salsa/web/common/public/signup?signup_page_KEY=6874

Postscript:  If you missed Olivia’s call, you can sign up to receive the highlights via email. Click –> here.

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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

AllanThis 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

 

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Marilyn, BA (before Alzheimer's)

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