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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: holiday stress

Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

Posted by Ann Napoletan in Caregivers, Expectations, Holidays, Mom, Ruminations, Tips

≈ 1 Comment

Tags

alzheimers, alzheimers holiday tips, caregiving, caregiving at the holidays, dementia, holiday stress, holidays with alzheimers, thanksgiving, thanksgiving with alzheimers

There’s one Thanksgiving that is forever etched in my mind for all the wrong reasons. Although it occurred eight years ago, in many ways, it feels like yesterday. When I think of the November holiday that I once looked so forward to, the first image that comes to mind is from 2010.

As I thought about writing this post and what tips I might offer to help you make the most of your holiday, I found myself overwhelmed. It took several days of contemplation for me to come to the realization that it really all boils down to one simple – yet extremely difficult – concept.

Expectations.

Weeks before that fateful Thanksgiving in 2010, I had unwittingly crafted an idyllic vision of how it would go. This wasn’t deliberate, but my subconscious went to work on how the day would unfold, what the preparation would look like, how the meal would come together, and most importantly, how my mom would be that day – her mood, frame of mind, level of agitation, ability and desire to participate, and all the other things that go along with Alzheimer’s.

Of course, at some point, my subconscious went off the rails – thus the dreaded idyllic vision. I’m sure memories of beautiful holidays complete with cherished traditions, found their way into the mix. Without even realizing it, I had set myself up for disappointment, profound sadness, anger, grief, and a dozen other emotions. Naturally, there was no way this Thanksgiving could be compared to or measured against those blissful memories.

In this particular case, our reality bore no resemblance to idyllic. Mom was having a bad day.  A very bad day.

That evening, I, along with Mom’s two caregivers and my daughter sat down to Thanksgiving dinner. By then, the food was cold, and my stomach was in a million knots. My dear mother was pacing and screaming as she had been all day. She was utterly inconsolable. Severe aphasia had long ago robbed her of the ability to communicate verbally, leaving her unable to express what was bothering her – or anything else, for that matter.

To Mom, that Thursday was just another day. It wasn’t her fault; it wasn’t anyone’s fault. It was this damn disease, all part of the unexpected hand we’d been dealt. Simply put, the picture-perfect holiday I had envisioned dissolved into a pool of tears and when it was over, I swore off all future Thanksgivings.

I could close by listing my top 10 tips for a successful holiday celebration, but instead, I’ll gently remind you to be careful of your expectations. Keep them reasonable. Check yourself along the way and make sure your subconscious isn’t taking over and creating an expectation that the day can’t possibly meet.

Rather than working to create a holiday just like those of years gone by, focus on the current reality. Remember that too many people, a lot of noise and commotion, and sudden changes to routines can really throw your loved one for a loop. Plan accordingly. Spending quality time together and making cherished memories – when it’s all said and done, those things are much more important than setting an impeccable table or serving a perfectly plump juicy bird at 4pm sharp. Flexibility is your friend and goes hand in hand with maintaining reasonable expectations.

It sounds cliché, but the past is in the past, and today is all we have. Try to go with the flow, relax, and create moments of joy wherever you can. Treasure the simple things – an unexpected smile, warm hug, or the expression on his face when he tastes a favorite dish that just might trigger a moment of clarity.

Here’s wishing you a blessed Thanksgiving with the people who mean the most to you. And, don’t forget to be gentle with yourself…

 

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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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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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Tags

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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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!!

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