As a child, I recall the holidays were about family traditions; the plump orange and the red delicious apple in the Christmas stocking, and if luck would have it a chocolate treat. This delicacy was sparingly consumed, to preserve the experience for as long as possible. There was always a small toy to open, and something wearable, and practical.
I recall spending hours, staring at the tree with the tangled jumble of coloured lights, and painted bulbs decorated with idyllic holiday scenes. Mom always cooked the perfect turkey with all the trimmings, and lovingly baked a fruitcake with pudding, as that was a British tradition.
At the age of fourteen, my father passed, and this recreated our holiday experience. On the first year, we attended the home of extended family members, and were embraced with attentiveness and love. Mom was a guest, and her apron for the first time, was neatly tucked in the broom closet. That year, there was no homemade cake loaded with candied fruit in the pantry.
The years progressed, and eventually I became the hostess and purveyor of the feast, although admittedly, I lacked my mother’s finesse for making it all look so easy. Slowly a new pathway was woven, and my childhood experiences were changing, as well as my responsibilities.
When mom began to exhibit signs of dementia, we realized traditions would not leave us, but rather they would need to evolve with her. As a family we would have to find a common ground, and learn to embrace the “new normal.”
As her disease progressed mom struggled with Christmas shopping, and was soon content to place the conquest for a perfect gift behind her. The last present she purchased for me was a pair of pink pajamas. I recall quite vividly how proud she was that “the prize” was so embraced. I do believe at times we forget that validation of one’s efforts is even greater than the gift itself. I recall keeping those pajamas for years; long after mom passed, as they were an amazing key to a wonderful moment in time. The fact they were tattered and faded did not diminish their value to me, and I must confess I anguished when it was time to let them go.
When mom required more care than we could manage, she entered a LTC home. Just before Christmas we would celebrate as a family, and bring her to the nearest sibling’s residence. It was there she watched with wonder, the ruckus of her children, grandchildren, and great grandchildren. Less verbal now, and sleepy at times, she observed with a twitch of amusement, before sleep would win and capture her attentiveness.
Eventually, as mobility became more difficult, our gatherings moved to the LTC home, because we relied more heavily on the professional care team to insure mom’s physical needs were met.
There were times, I mourned for the return of innocence, the tall fresh tree (most often tilting to one side), the vision of mom in her apron, stuffing a fat turkey with bread, celery, and spices, and the wonderment of believing in a saintly sprite with rosy cheeks.
It then occurred to me, that although my traditions were changing to accommodate various factors beyond my control, I was not losing my past, but rather creating my future. In spite of mom’s memory changes, her family remained the gatekeeper of her life’s stories. These tales were nurtured and shared with our loved ones, and through story telling, the next generation was being primed to take possession of this legacy.
As this holiday season approaches, may we be reminded to embrace the moments, rethink traditions, and go with the flow. As care advocates, we are more adaptable than our loved ones living with dementia.
Here are some tips to alleviate holiday stressors:
Balance Rest and Activity: The stimulation of noise, a potentially new environment, and the change in routine may contribute to added stress for a loved one with dementia.
Think about Meaningful Activities: Is there a familiar task that could be delegated to a loved one so as to promote inclusion in activities? Mom was always the queen of potato peeling, and felt her contribution in the kitchen was important and valued.
Remember physical needs: In a different environment, gentle cueing to the bathroom location may be needed.
Be flexible: Would a luncheon be less tiring than a sit down supper? Is the option of potluck available?
Embrace what is: I think one of the most important lessons I have learned through this journey is that mom’s capabilities changed as dementia progressed, but she was still mom. Dementia could not take that away. Our story is never truly lost. It is like an inspiring novel, filled with adventures, laughter, sorrow, pain, and at times embellishments, depending on the weaver of the tale.
And so, in tribute to those who love someone living with dementia, I honour you as the gatekeeper of their memories. This poem is for you…
Guardian of Memories
I am the guardian of memories.
Lovingly the precious keys are fortified,
And I will carefully secure their rightful destiny.
Erosion, cast not shadows on my doorstep.
I am the guardian of stories.
Those vivid tales of rich adventures past,
Golden threads and woven reminiscence,
Valued above all monetary reckoning.
I am the guardian of heritage.
Traditions honoured, past and present merging,
Successors nurtured, ever-watchful vigilance,
We will find our rightful place in history.
I am the guardian of the future.
And in years to come when I am softly beckoned,
To find my rightful place beyond the stars,
My essence lives and legacy continues.
For we will not relinquish all our memories,
Circumstance or chance will not prevail.
A disease will hold no credence here, no merit,
Our stories will continue on their journey.
Ann Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.