When Alzheimer’s Steals Christmas

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Let your tears come. Let them water your soul.
– Eileen Mayhew

“The week” is here.

Two years ago at this time, I was sitting at Mom’s bedside focused on every subtle change in her breathing. The end of was days, if not hours, away.

Final Days: The Vigil

Watching a loved one die is a surreal experience. Somewhere in the far reaches of your mind, you have this misguided, nonsensical notion that she’s going to get better. But your logical self knows that isn’t the case. You know that ultimately, you will be packing up her things and leaving this place without her. Just the thought of it leaves you with a knot the size of Texas in your stomach.

One minute, you are quietly talking to God asking Him to take her, praying that her suffering will finally come to an end. And then you find yourself begging Him for just one more day with her.

That last day comes; something is different. You know the end is near. You watch as she takes her final breath, and it’s as though you can feel her soul being lifted toward the Heavens. It’s a moment etched in your memory forever. You’ll replay that last breath in your mind a million times. Even two years later, it feels like just yesterday.

Did she know I was right there with her until the end? Did she know how much I loved her and how sorry I was for those early years when I didn’t handle things as well as I could or should have?

Did she just squeeze my hand? Did she blink? No, that must have been my imagination. Or was it?

All I Want for Christmas Is… My Old Memories

This year, for the first time ever, I decided not to put up the tree. I feel overwhelmed and quite honestly, I’m really looking forward the holidays being over. I know there will be moments of joy, especially with the little ones, but the holidays will never be what they once were.

Christmas at Eason House, 2010

Christmas at Eason House, 2010

I’m angry that we were robbed of so many years. And, I’m sad that I can’t actually remember the last GOOD Christmas we had at Mom’s.

Even now my most vivid memory of Christmas Eve dinner was the last year she cooked and hosted. We were so mired in denial that we tried to go on as if things were fine. But they weren’t fine at all.

Mom was frazzled; preparing the meal was no longer enjoyable for her. It was a strain. She couldn’t get the timing quite right. There wasn’t enough food for everyone. When we sat down for the annual game of penny rummy, she said she didn’t feel like playing. The reality was, she didn’t remember how to play. She had done all these things a million times, but it was clear now that Alzheimer’s was winning. It was the end of an era. And dammit, that’s what I remember about Christmas at Mom’s.

New Traditions

Circa 1988. Mom at age 52.

Last year, realizing how difficult December 15th would be, we decided to do something fun that Mom would have enjoyed. We would make the best of the day and honor her memory. Baking Christmas cookies made the most sense.

Oh how she loved to bake, and her cookie trays always looked just perfect. Thus began a new tradition, “Gram’s Cookie Day.” So, this weekend instead of drowning in tears over what’s been lost, we’ll bake some old favorites. I’ve no doubt she’ll be watching over us to be sure everything is up to her standards. (((smile)))

Yesterday, Today, and Tomorrow

My mom adored Christmas. She loved the decorations and traditions, loved being in the kitchen baking and cooking, and loved being surrounded by family. She was generous beyond words and it gave her such joy to watch as everyone opened the gifts she had carefully chosen.

I want to love the holidays as much as I used to; as much as Mom did. But, I fear those days may be gone forever. Now it seems the arrival of Thanksgiving is little more than a reminder of 2012.

December 15th will always arrive with a vengeance ten days before Christmas. There’s simply no way around it.

Giving Tuesday: Bravelets to donate $20 per item sold!

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Today is GIVING TUESDAY, and the awesome folks at Bravelets are doing their part by doubling all donations today!

Purchase your Bravelet today from our fundraising page and $20 will be donated to the Alzheimer’s Association to fund research and programs. With seven unique styles to choose from, there’s one to suit every taste, and each time you wear your Bravelet, you’ll be helping to raise awareness!

Giving Thanks…

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IMG_3830-beattieThe arrival of the holidays brings a flood of competing emotions for me. Exactly two years ago today, we brought hospice on board. It was a time of both despair and relief; things were changing moment to moment, and we had reached a whole new level of helplessness and desperation.

No matter how hard we fought, it seemed as though Alzheimer’s might be winning. Engaging compassionate hospice professionals brought a measure of comfort to a very uncomfortable situation – comfort in knowing we were surrounded by angels who were not only knowledgable, but also caring and empathetic. They were “all in” from the moment they arrived, and I felt like we were the most important family in the world to them.

Two years ago, we still held onto hope that with the intensive support, loving care, and indisputable expertise of hospice, mom might rebound one more time. However, that wasn’t meant to be. So, Thanksgiving remains a powerful, heart wrenching reminder of those final few weeks

But this is also a time to reflect on the many blessings that have enriched my life over the past year. First and foremost, of course, are my family, faith, friends, and health. Without these, none of the rest would be possible.

I’m incredibly grateful for the opportunity to touch and be touched by so many caregivers and advocates through this blog, my Facebook page, the USAgainstAlzheimer’s Support Group, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.

I’m grateful to have attended the WomenAgainstAlzheimer’s Out of the Shadows Summit this fall in Washington, DC, to be a founding member of ClergyAgainstAlzheimer’s and a contributor to the group’s first book, Seasons of Caring (December 2014). I’m thankful to have been a member of the steering committee for our local Walk to End Alzheimer’s and for the friends and supporters that generously contributed to our team, Marilyn’s Mighty Memory Makers.

I’ve crossed paths with some of the most passionate, inspiring people on the planet and been presented with countless opportunities to make a difference over the past year. I took a leap of faith, leaving the company I’d been with for almost 27 years, to join an organization with a strong mission I believe in. Five months later, I can say with confidence it was the right move and I’m finally where I was meant to be. For those things, I’m grateful.

I’m thankful I have been able to keep my mom’s memory alive, and that her spirit shines brightly on the world every single day. I’m thankful she’s still teaching me new lessons, inspiring me, and that she continues to touch thousands of lives. And I’m thankful to feel her presence on a regular basis.

To say I’m blessed is an understatement, but oh how I miss my mama.

Alzheimer’s & Managing Holiday Expectations

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“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….