Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

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

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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…

Thanksgiving Blessings

22 Tuesday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Helpful Resources, Holidays, Inspiration, Life After Caregiving, Ruminations

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alzheimers, caregivers, caregiving at the holidays, dementia, holidays, holidays with alzheimers

It was late summer into fall of 2012 when my mom began a very steep, swift decline. Autumn has always been my favorite time of year (Mom’s, too), but for the past four years, it hasn’t held the same appeal. Now September and October bring thoughts of her last year with us and what a painful time that was. She died on December 15, 2012.

I’ve often said that I don’t remember life before Alzheimer’s (BA). It’s such an all-consuming journey, and when it’s over, after the shock wears off, you realize you don’t even know yourself anymore. The person you were BA is gone and has been replaced by another version of you. That’s not an entirely bad thing; in many ways, the experience helped me grow into a better person.

For years now, Thanksgiving has felt like just another day, but the one thing it does is remind me to reflect on my many blessings. Losing a friend of 30 years last month was a sobering reminder that tomorrow isn’t promised and today is all we really have. That loss also made me realize how much I have to be grateful for.

One of my greatest blessings is the fact that I’m able to use a heartbreaking experience to help others. I’ve been afforded remarkable opportunities to share our story, offer support to caregivers, and advocate for more funding and improved care. Through this work, I’ve met some of the most caring and compassionate human beings on the planet and have forged friendships with passionate advocates around the globe. All of these things are such gifts.

It would be easy to remain bitter – or to resent that fact that this dreaded disease chose us – but what good would that do? Life is what we make it. My mom would want me to keep moving forward with purpose, and I think she would love that her story is making a difference.

The holidays can be especially challenging for caregivers. Let’s face it, those dreamy images we see in Martha Stewart and Southern Living just don’t reflect reality. This holiday season, remember that blessings can be found every day – often in the simplest things.

Alzheimer’s teaches us to appreciate even the smallest of miracles; an unexpected smile, an “I love you” that comes out of the blue when you thought you might never hear it again, or just the fact that your loved one ate a good dinner or had a restful night. My wish for you this Thanksgiving is that you’re able to find some quiet time to reflect on your blessings.

Peace, love, and joyful moments,
Ann

Other posts you might enjoy

Last Minute Tips for Thanksgiving
Reasonable Expectations: Key to a Happy Holiday
Getting Through the Holidays with Alzheimer’s
Giving Thanks
Alzheimer’s and Managing Holiday Expectations
Alzheimer’s Taught Me To Be Grateful

Catch the Spirit

03 Thursday Dec 2015

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

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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.

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.