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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Caregivers.com

Getting Through the Holidays with Alzheimer’s

19 Thursday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Caregivers.com, Eason House, Holidays, Life After Caregiving, Mom, Ruminations

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alzheimers, alzheimers and the holidays, alzheimers caregivers, alzheimers grief, dementia

As the holidays approach, stress levels tend to rise and expectations (often unrealistic to begin with) run amok. It can be a recipe for the ultimate disaster if we aren’t careful. Chances are, if you’ve been a caregiver for a while and your loved one is in the advanced stages of the disease, you know all too well what I’m talking about.

But for those who may be less seasoned, I thought it would be a good time to share a bit about how our holidays changed as my mom’s condition deteriorated – and how we coped (and are still coping today).

Check out Holiday Hoopla: Don’t Let It Get You Down. My hope is that this short piece may help you create reasonable expectations and limit your own heartbreaking disappointments.

Holiday Hoopla was written in 2012. Mom had taken a turn for the worse in the late summer/early fall and I believed we had reached the end of the road. I canceled a pre-paid trip to Mexico at the last possible minute in September, but to everyone’s surprise, she began to bounce back a bit.

By the time Thanksgiving rolled around, Jess and I were emotionally and physically worn out. If there was any chance of making it happen, we really needed a couple of days away. Mom seemed to be doing well, stable at least. She wasn’t having the horrible days and nights that we’d experienced in September and October, so her caregivers encouraged us to take our Chicago trip.

Happier holiday times, circa 1990. Mom, age 54

They reassured us she would be just fine, and after much deliberation and a healthy dose of guilt we packed our weekend bags and drove to the Windy City. I knew Mom would be well cared for, and we would be better for having had a few days away. If anything happened, they would call and we could head back immediately.

Although we were on edge Thursday and Friday, receiving no phone calls led us to believe things had at least remained status quo. What a relief! Or so we thought.

We drove back Saturday and arrived to find the wheels had essentially fallen off the bus in those 72 hours. It was a steep decline and one from which Mom wouldn’t rebound… On December 15, 2012, she earned her angel wings.

We still go to Chicago for Thanksgiving – it has become our new tradition. The trip gives us something to look forward to instead of spending three weeks dreading the impending holiday. It’s not the same as the wonderful Thanksgivings we had as a family; however, those times are distant memories. November and December will never be what they once were. But, life must go on…and it does.

However you decide to spend the holidays, I wish you joy and peace – most of all peace. Remember that only you know what’s best for your family and your unique circumstances. Be well, my friends. Happy Thanksgiving to you and yours.

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Telling Our Alzheimer’s Story: When Words Aren’t Enough

02 Wednesday Sep 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn Central Ohio, Caregivers, Caregivers.com, Expectations, Face of Alzheimer's, Life After Caregiving, Mom, Ruminations, Walk to End ALZ

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alzheimers, alzheimers story, caregivers, dementia

Retirement Hot Air Balloon Ride, Age 62

Today I was interviewed for a newspaper article promoting the upcoming Columbus Walk to End Alzheimer’s. We spent the better part of the hour talking about my experience in dealing with this horrific disease – the way it crept into our lives, the way it took hold of my beautiful, funny, independent mother, and ultimately, the way it rewrote our life story.

This evening, as I sat down to send the reporter a couple of things she asked for, I realized something. It struck me that I was trying desperately to show this stranger exactly who my mom was before Alzheimer’s as well as the precise manner in which this vile monster attacked her.

I was attempting the impossible. No matter how many stories, photographs, or videos I share, I will never succeed in conveying what I want so badly to convey. There aren’t enough words or pictures in the world to describe the havoc this disease wreaks on everyone it touches.

Following the example that Mom set, I try to focus on the positive. Her motto had always been, “If I don’t laugh, I’ll cry.”

I tell caregivers that it’s okay to laugh; in fact, sometimes laughter is the only thing that gets us through the day. I tell them to live in the “now,” and savor the time they have left with their loved one. I try to be upbeat, providing some sense of encouragement and hope because I believe attitude is critical to overall wellbeing. And the reality is that despite all the pain and heartache, there are still joyful moments to be had.

Circle of Life

Circle of Life, Age 76

The other side of the coin, however, is that this disease is loathsome, and it’s unrelenting. Over the course of a typical Alzheimer’s journey, we often witness the unthinkable; things no one should have to live through (as the person living with Alzheimer’s) or witness (as the family caregiver). I can’t imagine another disease as unpredictable and emotionally draining. At times, it’s a living hell.

How can one possibly tell this complex, gut-wrenching story in a manner that renders understanding in even the most inexperienced bystanders? I suppose we just do the best we can and then let it go realizing the story is ours and ours alone. No matter what words or images we choose, we’re reaching for the unreachable. Finding a way to fully articulate this experience remains as elusive as the disease itself.

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Missing Mama….

10 Saturday May 2014

Posted by Ann Napoletan in Caregivers.com, Life After Caregiving, Mom, Mother's Day, Quotes, Ruminations

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My second Mother’s Day without Mom…

She has been on my mind so much this week, for many reasons. These past few days, I would have given anything to be able to sit and talk with her – about dreams, opportunities, possibilities, and priorities. Her words of wisdom – absolutely priceless.

Instead, when I lay my head on the pillow tonight, I’ll quietly ask for her guidance and pray to hear her voice with the clarity of a crystal clear, pure and pristine mountain stream.That face

Happy Mother’s Day to all of the wonderful mothers out there, and blessings to those who are missing their own sweet mamas…  I wrote this piece last year and thought I would share it again in the hope of inspiring you to ponder the question….  What Is Your Mother’s Legacy?

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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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