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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: caregivers

Alzheimer’s & Gratitude: A Matter of Perspective

15 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, alzheimer's & brain awareness month, Blogging, Caregivers, Expectations, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Smiles

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Tags

alzheimer's & brain awareness month, alzheimers, alzheimers gratitude, caregiver grief, caregivers, dementia, gratitude

gllogoJune is Alzheimer’s & Brain Awareness Month in the United States, and I’m grateful to my new friends at the worldwide Network for Grateful Living for helping shine the spotlight on Alzheimer’s!

After being introduced to their site, I was inspired to write a piece about Alzheimer’s and gratitude, two things we don’t necessarily see as going hand in hand. We know this disease brings with it pain and sorrow, shattered dreams, and disappointments over lost opportunities. We mourn uniquely beautiful lives cut short, and we struggle to say goodbye to what could (and should) have been. It’s a journey none of us would choose.

However, like anything in life, perspective matters. Some days, I could easily curl up in a blanket and sob for hours about how unfair it is that I began to lose pieces of my mom before I was out of my 30’s. Even as I write these words, I feel tears well up in my eyes.

Yet Alzheimer’s also made me a more compassionate person. It opened my eyes in many ways – to life’s most simple pleasures, to the fact that my story might actually help others, and to the idea that I had talents and abilities that had gone untapped and might be valued in venues I had never considered.

sunset-over-mountainsLiving through the experience reminded me that my time on earth is limited and there’s no time like the present. It made me sweat the small stuff a bit less. It even made me realize I could leave behind a very comfortable 27-year career with a Fortune 100 company to work for a much smaller non-profit with a strong mission and values I believed in.

Of course, I would trade every last one of those things to have my mom back. Of course I would. But having her back in this life isn’t an option, so I the best way I can honor her is to go on and live the best life I can. The best way I can keep her spirit alive is to do what I now feel is my life’s work, which includes the recent launch of a registered 501(c)(3) non-profit organization, Marilyn’s Legacy: A World Without Alzheimer’s.

I wish I’d grasped the idea of Alzheimer’s and gratitude much earlier in our journey, but I guess that’s what growth is all about. Fortunately, with time, experience, plenty of soul searching – and an ocean of tears – it came while she was still alive. The piece I wrote for Gratefulness.org is all about what a blessing that was. I hope you’ll take  few minutes to visit the site to read and share Alzheimer’s Taught Me to be Grateful.
bd
Bookmark the site and check them out on Facebook as well. Be sure to read about Brother David and the fascinating life he led before co-founding the Network for Grateful Living. This has become one of my favorite places for daily inspiration!

 

 

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Catch the Spirit

03 Thursday Dec 2015

Posted by Ann Napoletan in Caregiver Burnout, Caregivers, Holidays, Inspiration

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Tags

caregivers, caregiving at the holidays, holiday stress, holidays

Today, something a tad bit off-topic, but relevant nonetheless. I wrote this piece back in 2003. Twelve years later, we still seem to be racing through life. Caregivers have even more challenges at this time of year – trying to juggle everything while doing their best to create a perfectly idyllic holiday.

The world seems to be going crazy, doesn’t it? Another shooting this afternoon. Fourteen people dead. I just read there have been over 350 mass shootings this year alone in the U.S. Our priorities are so mixed up, what’s happening? So much anger and hate. Too many tragic events. The world needs peace and love, and we all need to slow down. I hope these words touch your heart.

 


© Ann Napoletan

December 17, 2003

As I sit here alone at the end of my day, the house is quiet and dark, lit only by the twinkling lights of the Christmas tree and the glare of the laptop’s display panel.  A sparse dusting of snow has fallen and the mercury will likely plunge to icy-cold depths tonight.

My workday was hectic as usual and I opted to forgo lunch in order to escape the office early for some errand running.  Little did I know those errands would prompt such a conundrum of thoughts in my overactive, ever-churning brain.

Drained by the day’s frenzy, yet wound tighter than a rubber band perched for launch, I was more than ready to switch gears when I hit the road shortly after 3:30.  With holiday music playing on the radio and a light powdery snow falling gently from above, I thought about the fact that Christmas is just one week away.

With each year, time passes more quickly.  The month between Thanksgiving and Christmas is gone in the blink of an eye; holiday preparations are rushed, and it seems as though there is less and less time to actually soak up the spirit of the season.

This year, I made a conscious decision to simplify.  Rather than putting up two trees, I did one.  Instead of dragging out every single Christmas decoration from the many I have collected over the years, I pulled out only those that struck me as most cherished the day I set to the task of “decking the halls.”  As for baking, I decided there would be no rushing to squeeze in all the hours it takes to make a dozen different kinds of cookies.  Instead, I opted for two traditional favorites – Aunt Flora’s pizzelles and my soft cutout sugar cookies.   It just wouldn’t be Christmas without those.  Even the process of shopping for gifts was simplified as much as possible through use of the Internet.

My deliberate attempt at holiday simplification was definitely a tradeoff.  Sure, I find myself missing some of those extra decorations and lights that are still tucked away in their boxes, and I would love to have my usual extensive assortment of homemade cookies with which to adorn holiday trays.  But, at some point, something has to give.

This year, I actually enjoyed the 4 hours or so that it took to lovingly press each of those pizzelle cookies. I wasn’t nearly as rushed as in past years, so I was able to relish the warmth emanating from the iron and the scent of anise seed and sweet pizzelle dough as it wafted through the air.

Since I’d pared down my decorations, I took my time trimming the tree.  I sat for hours sorting through ornaments – taking time to place them just perfectly and think about the history and fond memories each special ornament holds.

This past weekend, we even took a ride to look at Christmas lights, something we hadn’t done in years.  And, over the past couple of weeks, I’ve tried to spend some quiet time now and then in the evening, just enjoying holiday music and the magic of our very special tree.

Even with all of this, I feel as though the holiday season is passing me by.  The evenings are short and the weekends even shorter.

It all makes me wonder about life and the ridiculous pace at which we run.

In the past two days, I have witnessed three drivers blatantly run red lights.  I’m not referring to sneaking through as yellow turned to red, but rather RUNNING the full-fledged-red light at a dangerous rate of speed.  Fortunately, in all three instances, other drivers were alert and disaster was averted.

Are people in that big of a big hurry?   Has the holiday rush made everyone kick up their pace yet another notch?  Or are people just so consumed by their ever-growing to do lists that they have become oblivious to their surroundings?  How much is too much?

Twice in the past week, I have been in stores and seen people rifling through racks while carrying on lengthy, rather loud, cell phone conversations.   I am one who has always defended appropriate use of cell phones.  Mine is a great convenience to me; however, I find it hard to believe that anyone has a 30-minute conversation that is so pressing it must be carried out in public for the entire world to hear.   Can’t these things wait?

What is happening to our society?

Based on life as we know it today, I truly fear for where we will be in 10 or 20 years if this pattern continues.

Priorities have become a tangled up mess, and for too many people, the things that bring true happiness are nowhere near the top of the list.   There is certainly no time for dreams or setting truly fulfilling personal goals.

People displaying road rage as they make their way from one pre-holiday sale to the next – where will it end?

The next time you’re waiting in line in a store or sitting in traffic, take time to observe those around you.  How many people are on cell phones?   Compare the number of friendly faces you see with the number of scowls.  How many instances of road rage do you witness in a week?  And, how many of the people you pass by in a day look as if they are stressed to wit’s end?

So many people just living day to day, minute to minute – not even LIVING, but merely existing.  From the moment the alarm sounds at dawn, until their weary heads hit the pillows in the wee hours, people are just going through the motions.  Crossing things off the to-do list, paying the bills if just barely, scurrying to meet unrealistic deadlines and goals dictated by others, running hither and thither never really accomplishing anything of great significance.

This year, before it’s too late, I challenge you to slow down and catch the holiday spirit.  Don’t let it go – grab it.  Enjoy the simple things.  Don’t let the intense commercialism fool you; Christmas isn’t about the material things.  Without hesitation, I would trade it all for simpler times and a more serene world.

In the words of John Lennon, life is what happens while you’re busy making other plans.

Each of us only gets one life; make the best of everyday…do what makes you happy; make a difference in the lives of those you love and those you may not even know.

And, Happy Holidays.  Now, go catch the spirit – before it’s too late.

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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

≈ 2 Comments

Tags

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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Marilyn, BA (before Alzheimer's)

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