Mad as Hell – at Alzheimer’s

24 Thursday Apr 2014

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Grieving, Life After Caregiving, Mom, Ruminations

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alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

Tonight, I don’t feel like beating around the proverbial bush – let’s just get right to it.

I’m MAD. Pissed. Irate. Infuriated.

Angry as hell that I don’t have my mom. Mad that when I have a day like I had today I can’t pick up the phone and talk to her about it. Furious that Alzheimer’s took her away just when she was supposed to be starting to enjoy the retirement she worked so hard for.

I know I’m not the only one who has ever felt this way, but at the moment it doesn’t matter. I want to shout from the rooftops. I want to shake the people who have the power, yet don’t do anything to change this situation. I want the world to know what this disease does and that it’s so much more than memory loss. I want them to realize this is not just a disease of the elderly; people are diagnosed in their 40’s and 50’s – sometimes even younger. I want the masses to be well aware that Alzheimer’s has NO SURVIVORS.

Mom would be 77-years-old if she were here today. She lived until two months past her 76^th birthday. When she died, it had been nearly a decade since we’d been able to travel together and almost that long since we could sit and have a normal conversation. We missed out on all of those precious years together. At 77, she should have been able to travel to Napa with us a couple of weeks ago. Oh how she would have loved that trip!

My mom’s body was healthy and strong; had it not been for Alzheimer’s, I have no doubt she would be here enjoying an active retirement just like so many of her friends. And, right now I’d be on the phone telling her about my day while she reminded me that everything happens for a reason even if we don’t know what it is….

Chicken Soup For the Soul: Living With Alzheimer’s and Other Dementias

20 Thursday Feb 2014

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Books, Caregivers, Face of Alzheimer's, Fundraising, Helpful Resources, Inspiration, Life After Caregiving, Mom, Products

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alzheimer's books, alzheimers, caregiving, chicken soup for the soul, dementia

I couldn’t be happier or more honored to be a part of this fantastic project. Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias is now available for pre-sale and will be in bookstores on April 22nd. The book contains 101 personal stories, including one that I wrote about our journey.

I hope everyone will consider purchasing the book and sharing the news with your friends. All royalties are going to the Alzheimer’s Association, which makes the book that much more special.

The Face of Alzheimer’s: Michael Ellenbogen

03 Thursday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Early Onset, Face of Alzheimer's, Helpful Resources, Mom, Ruminations, The Early Years

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alzheimer's books, alzheimers, alzheimers story, dementia, early onset alzheimers

book I recently read Michael Ellenbogen’s book From the Corner Office to Alzheimer’s and found this poignant account of living with the disease to be touching, heartbreaking, and eye-opening to say the least.

Ellenbogen, a former IT exec and self-proclaimed workaholic, was diagnosed with Early Onset AD in 2008. At that time, he was just 49-years-old and had noticed his earliest symptoms ten years earlier – before his 40th birthday. His forthright style helps us to understand what it’s like – from noticing the initial subtle changes, to trying to keep the wheels on the bus, so to speak, and live a “normal” life, to the search for a diagnosis, and beyond.

Yesterday, Ellenbogen wrote an enlightening post on katiecouric.com. When you have a few moments, pop over there and read My Name is Michael, and I Am Living with Alzheimer’s.

Stories like this not only serve to help crush the stereotype and stigma surrounding dementia, but they allow us – the family members, friends, and caregivers – to understand what it feels like to be that person.

In those early years with my mom, we didn’t know what was happening, and even once we did, we tended not to talk about it to avoid upsetting her. Maybe we thought if we buried our heads in the sand, it would go away. We spent years living in denial. I so wish we’d handled it differently.

Courageous people like Michael Ellenbogen who are willing to share their story are helping today’s families see that it’s okay to talk about it. In fact, it’s really only through talking that we have any chance of solving the problem…

Learn more about Michael by visiting The Michael Ellenbogen Movement on the web.