December 25, 2015: I hadn’t expected any gifts from Mom on Christmas 2015, but she surprised me, as had so many times before on our Alzheimer dementia journey.
“Would you like tea Mom?” I asked as we rolled into to the facility’s drawing room.
“No, I I I I I I I don’t like the tea,” Mom replied. Mom loved tea. We had tea every day at three. Or just about.
“Okay, how about a chocolate?” I offered.
“Nah nah nah nah nah…” she tried to decline. Mom also loved anything sweet. Always had. I chose a truffle from the box I’d purchased a few days before at the village chocaleterie, and held it inside the range of Mom’s tunnel vision. It took a few seconds for Mom to zero in on the delight, a few more for her to get her hand in its vicinity, and another few for her to grab it between her thumb and forefinger. Once she had it in her grasp, she held it there suspended, not sure what to do with it.
“Try it Mom, I think you’ll like it,” I suggested. No movement. “Take a bite Mom,” I encouraged. “Taste it.” I smiled as she finally responded to the cues, lifted the little piece of heaven to her mouth, and bit into it.
“How is it Mom?” No answer. Mom chewed, and then swallowed while crossing and uncrossing her legs. Crossing and uncrossing. Crossing and uncrossing. I willed myself not to allow the crossing and uncrossing, crossing and uncrossing, and the hand fluttering to affect me. It was like Mom was a marionette who danced while sitting and playing an invisible piano at the whim of an unseen puppeteer.
It’s not her fault. It’s not her fault. Thank you for the patience I have learned these past five years. Thank you, thank you, thank you for the patience.
I’m not religious, as Mom had been, but I am most definitely grateful. And it was Christmas Day after all. I reminded myself to breathe. Breathe in. Slowly. Breathe out. Slowly. Breathe in. Slowly. Breathe out.
“I don’t know wh wh wh wh wh wh wh wh….” Mom stopped in mid “what” and closed her mouth. I noticed again how the shape of her jaw had morphed into that of an infant with the top lip more pronounced and the chin receding.
“You don’t know what Mom?”
“I don’t know wh wh wh wh wh wh wh wh.” Silence. We sat face-to-face: I on the edge of an armchair, she in the annoying and dubious safety of the wheelchair’s bells and whistles. Our knees touched. So did our hearts and souls.
I waited as Mom processed; she was agitated. I saw it in the set of her mouth, the line of her cheek, the look in her eyes. She had something important she wanted to say, but dementia barriers were blocking the way. She clapped her hands in frustration at the ends of unfinished sentences, percussing words she was unable to speak. I wished I could decipher Mom’s Morse-like code in the moment as I had on many previous occasions. It would make things so much easier. But it wasn’t to be; I was left to divining.
“You don’t know what Mom?” I repeated my question.
“I don’t know. I don’t know what I don’t know,” she replied, hands fluttering like mad. When everything was going nowhere, music always helped.
“How about we sing a song Mom?”
“Well, I don’t know.”
“How about Jingle Bells?” I suggested despite the heartbreaking lack of snow outside. I began to sing out of key.
“Jingle bells, jingle bells, jingle all the way. Oh what fun it is to ride–”
“In a one-horse open sleigh!” Mom chimed in.
Her once beautiful singing voice was raspy and breathless as she completed the verse, but it sounded like a Christmas choir of angels to me. A little Yuletide miracle. If one were prone to believing in such.
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My Alzheimer's Story 
Love your story and I could visualise every moment with you. It made me smile and laugh as well. I could feel the frustration, lol, and know that feeling too. How cool that you could defuse situations for your mum so well – she was so so blessed to have you.
I am sure you miss mum terribly this year dear Susan. The first one is tough.
Know though that this never ever changes, so these beautiful memories are what will keep mum with you every single Christmas for ever more. Keep remembering all the joy and hold it close.
I miss both my parents intensely as if it was yesterday. My daughter and I have created and continue to, our own special Christmas with the 2 of us, but we always know mum and dad are with us. Even with little traditions of playing the oldest CD I own, Dean and Nat King Cole – White Christmas, as we decorate the tree and drink Moet. This was mums CD and that simple disc holds many years of wonderful memory and precious times together.
Be happy, keep smiling, laugh often and love grandly.
With love, festive cheer and joy my friend.
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Yes, Leah, many tears have been shed the last few weeks, and yes, I am grateful for all the memories, and in particular for all the audio and video recordings, as well as the photographs, the written pieces and the movie of my mind. There are many people in this world who, like me, are alone without family or friends with whom to create new traditions at special times so these times become difficult to navigate. Nevertheless, there are ways and means to ensure we celebrate and to find joy in whatever our individual situation may be. Thanks as always for your kind words and wisdom.
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The pleasure is always mine.
Thank you for your amazingness and inspiration to us all.
How proud your mum would be.
Love and bliss too for the brand new fresh sparkling New Year of 2017.
L. X
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