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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Quotes

Alzheimer’s & Managing Holiday Expectations

21 Friday Nov 2014

Posted by Ann Napoletan in Caregivers, Eason House, Expectations, Helpful Resources, Holidays, Mom, Quotes, Ruminations, Tips

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alzheimers, caregiving, dementia, grief, holiday stress, holidays with alzheimers

“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.”  ― Brandon Sanderson

Moments of true joy are often fleeting in our hectic, fast-paced 21st century lives. Add Alzheimer’s to the equation and things become more challenging. Even on the best days, caregivers struggle to find balance, contentment, and peace of mind.

As the holidays approach, we feel pressure to create a picture perfect Norman Rockwell backdrop, from the spectacular meals and family gatherings to the gifts, traditions, and festive decor. While some level of planning is obviously necessary during the holiday season, fully embracing reality and recognizing limitations is critical to avoiding disappointment.

Dreaming of Holidays Past

Back in 2010, I decided Thanksgiving would be just like old times if I cooked the traditional meal at Mom’s residential memory care home. That would solve everything; I actually convinced myself that if I tried hard enough, I could create holiday utopia. 

You can imagine how that turned out!

As is almost always the case, Alzheimer’s quickly reminded me who was in charge. This is an excerpt from a piece I wrote later that evening:

I cooked dinner, and all the while, my stomach was churning, my heart was breaking, and my mind was going in a million directions.

Who is this woman? What can I do to help? Get me OUT of here. What if I’m doomed to the same fate?? Why didn’t I bring a bottle of wine? Is this really my mother? This is just a bad dream, right? Will she let me hug her? Should I try to talk to her? Can I convince her to taste this stuffing? Should I back off and give her space? Why can’t ice cream fix everything? 

Quite honestly, I don’t care if I never cook another turkey in my life… celebrating Thanksgiving on a deserted island sounds like a spectacular plan, in fact.

Grand Illusions

I was crushed, but I had broken the cardinal rule of dealing with dementia – I had created a fantasy that would have been impossible to live up to under the most ideal of circumstances. Simply put, I set myself up for major disappointment.

Special occasions provide fertile ground for creating these grand illusions, and that’s why I share this story. Remaining firmly planted in reality doesn’t mean everything has to be gloom and doom. It simply means avoiding overinflated expectations.

Depending on how far along your loved one is in their progression, they may not even realize it’s a holiday. To them, Thanksgiving is just another day. Even just a few extra people in the house can be overwhelming. Routines are put on hold, noise levels increase, and what feels like a festive atmosphere to the average person may translate to full on chaos and commotion for someone living with dementia.

Keeping It Simple

Set aside some quiet time to spend with your loved one on Thanksgiving. Prepare visitors ahead of time, especially if they aren’t accustomed to dealing with dementia and its challenges.

Some other keys tips for making the holiday happy include:

  • Keep noise to a minimum. Speak clearly in a calm, soothing tone.
  • Minimize distractions, and remember that if you are tense, your loved one will pick up on that feeling.
  • Create a quiet area where one or two people at a time can visit.
  • Watch for signs of overstimulation and recognize it may be time for a break.
  • Keep some old photographs handy for reminiscing.
  • Realize that sometimes just sitting and holding their hand or rubbing their back makes for the perfect visit.
  • Don’t argue or correct them. Remember the best visits involve you entering their world, rather then expecting them to come to yours.
  • Know that the emotions stirred by your visit will last long after the memory of your time together has faded.

First and foremost, find joy in the simple things and avoid the temptation to create unrealistic expectations during the holiday season. The holidays will undoubtedly be different than they used to be, but they can still be very beautiful.

Wishing you and yours peace, joy, love, and a bounty of blessings this Thanksgiving….

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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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Alzheimer’s: Accepting a New Reality

15 Tuesday Apr 2014

Posted by Ann Napoletan in Caregivers, Expectations, Grieving, Guilt and Regrets, Helpful Resources, Inspiration, Life After Caregiving, Mom, Quotes, Ruminations, Saying Goodbye, The Early Years

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alzheimers, alzheimers acceptance, alzheimers denial, dementia

I read a lot about Alzheimer’s and dementia. A lot. Still, every now and then I come across something that grabs hold of me and won’t let go, because it reads exactly – and I mean exactly – like my own experience. Despite the fact that I tell people all the time, “we’re in this together” and “what you’re feeling is normal,” I sometimes forget those things apply to me, too!

Tonight, I read one of the most poignant essays I’ve ever seen discussing a topic that’s very close to my heart. In fact, it’s the subject of my contribution (Learning Acceptance) to Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias.

In his piece for Maria Shriver’s blog, Dr. Daniel C. Potts writes about reaching a point of acceptance – realizing that your loved one as you once knew them is gone, but their core remains very much intact. Always. Even dementia can’t strip them of their essence. It simply cannot.  Continue reading →

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Marilyn, BA (before Alzheimer's)

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