Younger Onset Alzheimers: The Epitome of Unfair

28 Monday Mar 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Grieving, Ruminations

Tags

alzheimers, alzheimers caregiving, alzheimers end of life, alzheimers grief, dementia, missing jim, younger onset alzheimers

Photo Credit: The Garner Foundation

I know we can all agree there is plenty in life that’s unfair, but at the moment one specific example is on my heart.

Not that long ago, Karen & Jim Garner and their children were just like any other family. However, all of that changed when Jim was diagnosed with Younger Onset Alzheimer’s Disease at age 48. Jim had a long successful career in the Air Force, and pictures from just a few years ago show a strong, handsome, athletic husband and father of two young children.

This weekend, Karen added a new post to her blog, Missing Jim. If you follow the blog you know that Karen writes with a raw, pull-no-punches honesty. I have such respect for this woman’s courage and grace. The blog is a story of true love, unexpected moments of joy, the kind of loneliness only this disease can exert on a wife, and a sense of loss that defies all logic.

In February, Jim began receiving hospice care. His decline has been swift. As I read Karen’s latest post, it reminded me of my own internal struggle in those last days with Mom. On one hand, wanting to let her go to a peaceful place where she would be whole again, yet on the other hand wanting so badly to hang on to her forever. I can’t imagine being a 46-year-old woman facing that clash of emotions as she watches her husband near the end at the hand of this horrid disease.

Please read and share Karen’s March 27th post titled, I Got That Dreaded Call. Keep this family in your prayers, and share their story. Help Karen educate the masses.

“I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea.” ~Karen Garner

The Angry Side of Alzheimer’s

23 Saturday Jan 2016

Posted by Ann Napoletan in Advocacy and Awareness, Early Onset, Face of Alzheimer's, Inspiration, Reblog

≈ 2 Comments

Tags

alzheimers, dementia, living with alzheimers, understanding alzheimers

Passionate, insightful, and important piece by friend and Alzheimer’s advocate Brian LeBlanc. Thank you, Brian, for sharing your life and experience with all of us! You’re making such a difference in the world!

A Bit of Brian's Brilliance

One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

Before my diagnosis, I had friends . . . lots of friends, or so I thought. These people who I thought were friends kept in contact with me, returned a phone call whether or not I left a message, would interact me with through Social Media or in person. Where in the hell are these people now? I have no idea. Don’t get me wrong, I’m not…

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Alzheimer’s Hope & Merry Christmas!

24 Thursday Dec 2015

Posted by Ann Napoletan in Advocacy and Awareness, Early Onset, Inspiration, Washington

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2016 election, Alzheimers advocacy, alzheimers awareness, alzheimers funding, alzheimers research, dementia

We-Can-Do-It-Rosie-The-Riveter-Poster As many of you know, last week, Congress passed the omnibus bill which included $350 million in additional funding for Alzheimer’s. This brings our funding to just below $900 million – which, while still woefully under what is spent on the other major diseases – is a vast improvement.

Hillary Clinton has now made Alzheimer’s a campaign issue and is the only candidate who has a solid plan for addressing this disease that WILL bankrupt Medicare and Medicaid if we sit back and do nothing (or don’t move quickly enough).

I just got some news about an upcoming town hall the Clinton campaign is holding next week in Portsmouth, NH, and it sounds like Alzheimer’s will also be spotlighted there. Portsmouth has a population of 21,000 and there are between 15 and 20 Younger Onset caregiver spouses in their local support group. That’s a massive number for such a small community – and those are only YOUNGER onset – age 65 and younger.

I was in the car today thinking about all of this, and it gave me chills. Back in 2004, when we realized Mom’s “symptoms” were more than normal aging, you barely heard the “A” word uttered. In 2015, it’s a Presidential campaign issue. Our voices ARE being heard. If you’re an advocate – keep doing what you’re doing. We’re chipping away at this, and brilliant researchers like Rudy Tanzi (named as one of Time Magazine’s 100 Most Influential People in 2015) and Reisa Sperling are so ready to find the answers we’ve been looking for for such a long time!

Last but not least, thank you for reading The Long and Winding Road. I am truly grateful for each and every visitor to this site and I would like to wish you and yours a very Merry Christmas. I’ll leave you with what was always my mom’s favorite Christmas song…