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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: 4M

Remembering…

02 Monday Sep 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, Behaviors, Eason House, End of Life Signs, Expectations, Heartland, Hospice, Mom, Ruminations, Uncategorized, Weight Loss

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alzheimers, dementia, end of life signs, hospice

mom angelsIt’s nearly impossible to believe a year has passed since Mom began her sharp and unexpectedly rapid decline at the hand of Alzheimer’s.  It was about this time in 2012 that I realized scheduling a big vacation months in advance was a bad idea. At the time, though, things were “okay”… who knew what a difference one summer could make.

Praying for Comfort

There were fewer and fewer good days; she wasn’t eating – beginning to even turn her nose up at some of her favorite sweets – and was losing weight quickly. From that point on, her diet consisted primarily of Ensure until the end. Oh how excited we felt when she would eat a cracker or a couple of grapes; more than that and it was as though we’d hit the lottery, we were downright joyous!

photo-58In those weeks, it was indescribably painful to see her so distraught; screaming, hitting her head, and often inconsolable. In the few rare peaceful moments she had, she would stare at the ceiling, entranced, with a soft smile on her face and eyes almost sparkling. There’s not a doubt in my mind it was the very beginning of her transition. As upsetting as it was, seeing her at peace like that was also an incredible relief, but those moments of respite never lasted long.  All too soon, the terror she was obviously feeling would return.

Time For Hospice?

Finally, the time came where I knew I needed to make a decision. I called hospice to have them come out and do an assessment; unfortunately, we had a mind blowing, horrific experience with the intake nurse. I ended up asking her to leave before the process had been completed. On Monday, I called the office and told them to destroy the paperwork – I had changed my mind (there’s more to the story…).

It was the beginning of the final dizzying, nausea-inducing rollercoaster ride that lasted for the next 3 or so months. I thought I had seen it all, but I hadn’t seen anything yet…

Hopelessly Unpredictable Progression

So crazy to think earlier that same year I truly thought that she could easily live another 10 years or more. Physically, she was strong. But things can – and often do – change very rapidly where this disease is concerned.

Mom wasn’t done fighting, though. While she never bounced back to where she had been, she did turn things around one more time – for a short spell – before that final downward spiral. I went from being certain she only had weeks left to believing she might actually rebound; however, that was not the case. Amazing how your mind plays games, but with this disease, “rebound” is a very relative term…

_____

If you would like to help us raise awareness, research dollars, and funds to help families on this journey right now, visit Marilyn’s Mighty Memory Makers’ page to join the team or make a monetary donation. In just two weeks, we’ll be walking to #ENDALZ.

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Walking to #ENDALZ

17 Saturday Aug 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, ALZ Assn Central Ohio, Events, Facts & Figures, Mom, Walk to End ALZ

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Walk to End Alzheimer's

banner_walktoendalz2Well, it’s that time of year again. The Walk to End Alzheimer’s has moved from June to September, and apparently that has thrown me off! I’m just now – with the Walk less than a month away – starting my fundraising in earnest, so I have a lot of catching up to do.

4M Strikes Again!

mom1This year’s event will take place on September 14, one day shy of 9 months since my beautiful mother was set free of this horrible disease. Last year, we raised $2,670, and I would love nothing more than to honor her memory by beating that – even if by just one dollar! If you can help, please visit Marilyn’s Mighty Memory Makers on the web to donate.

This is a disease that can strike any family – it doesn’t discriminate, and almost all of us have been or know someone who has been personally touched by its wrath.

The Numbers Don’t Lie

Consider this ….  By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million—a 40 percent increase from the 5 million age 65 and older currently affected. By 2050, the number of people age 65 and older with Alzheimer’s disease may nearly triple, from 5 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow or stop the disease.

Based on those numbers, there’s no question that time is of the essence. Researchers are making advances every single day, but funding is just not there yet. In 2011, the NIH spent $3 billion on research into AIDS, $4.3 billion on heart disease, and $5.8 billion for cancer…  Compare those figures to what is being spent annually on ALZ research… less than $500 million.  

Mortality Rates are Rising

rib-purple_endalz_sm

Yet ALZ is the only cause of death among the top 10 in America without a way to prevent it, cure it or even slow its progression. Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases, including the number one cause of death (heart disease), decreased.

If you would like to help, please visit Marilyn’s Mighty Memory Makers on the web. It only take a few clicks to make a contribution, and every little bit helps.

Thank you!!!

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Pat Summitt stepping down as Lady Vols’ coach

18 Wednesday Apr 2012

Posted by Ann Napoletan in 4M, Celebrities, Early Onset, Face of Alzheimer's, Pat Summitt, Walk to End ALZ

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I was stunned last year when Pat Summitt announced she was suffering from Alzheimer’s.  A strong, independent woman.  Charismatic.  Role model for others. My mom shared these same traits, and I think that makes it even harder to imagine her, like Coach Summitt, falling prey to the disease.   I’ve said so many times over the years that my mom was the LAST person I would have ever expected to suffer its wrath, and I felt the same about Pat Summitt.

Well, today, just eight months after the announcement, at age 59, Pat Summitt told the world she is stepping down as head coach.  On a positive note, the winningest coach in college basketball history – male or female – will assume the title of “head coach emeritus.”  While she will no longer actively coach the team, it sounds like she will continue to be very much a part of the program for as long as the disease allows.

My mom always loved watching women’s basketball and had great respect for Coach Summitt.  Who would have imagined that the two would end up having so much in common?  Pat Summitt – and my mom – remind us that Alzheimer’s can strike anyone, regardless of age, gender, status, or strength of character.  It knows no bounds, and  does not discriminate, which makes is so terribly imperative that a cure is found…

To read more about today’s announcement, follow this link and if you would like to contribute to this year’s Walk to End Alzheimer’s or join Marilyn’s Mighty Memory Makers, visit our team site.

… Until next time… Carpe diem…

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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