Reclaiming the joys of life, in sickness and in health (Happy International Women's Day)...
Towards the end of last year, I met a young woman whose mother has had dementia for the last few years. She told me about the discouraging discourse that she feels surrounds her mother’s condition, the negative associations that society attaches to it, and the depressing way in which she, her mother, and their family are expected to act during such a ‘tragic’ time. The journey has been one of ups and downs to be sure, but in large part, her mother’s day-to-day reality appears to have improved when compared with the life she led prior to her diagnosis.
But how can someone’s life improve after becoming ‘sick’? How could she possibly be happier now that she is on a cognitive decline? Well, the truth is, we’re taught to focus less on life’s simple joys and more on its complexities and worries as we grow up—I think most of us can agree that this is an aspect of adulthood that is, well, pretty overrated. My friend’s mother often felt depressed, and was generally quite a serious person. However, since her dementia, she has forgotten all about her depression. She notices nature, she laughs, and she plays.
Today is International Women’s Day, and in honour of my inspirational friend, and her inspirational mother, I wanted to share this story. It was written by Liza Futerman for her mother’s 60th birthday this past November—enjoy:
“Keeper of the Clouds”
By Liza Futerman
On Tuesday, August 11th 2015, at approximately 10 am, I was driving Mom from one doctor to another in order to get further affirmation for her ‘rapidly deteriorating condition.’
It was not because Dad and I couldn’t see her confusion when it came to the shower or toilet routines, or any other activities that required performing a sequence of actions in a particular order. Rather, we needed the affirmations to make sure we had all the official documents that could guarantee Dad getting all the insurance monies he and Mom were entitled to. We needed this money to hire a foreign worker who would live with my parents and help Dad take care of Mom.
So we sat in the car on a hot summer afternoon. I was stressed because there were other doctors to see and forms to fill out.
Mom was carefree. She sat quietly in the passenger’s seat next to me and observed, taking everything in.
We stopped at the lights on a major intersection. My mind was racing to the next doctor’s waiting room, doctor’s office, home, then insurance agent, then the ministry of internal affairs to validate the foreign worker’s permits, then phone calls to the neurologist, the memory clinic, the social worker to set further appointments…
Mom’s mind, unlike mine, was present.
In the moment.
We were still waiting for the lights to turn green, that is, I was waiting. Mom wasn’t.
The concept of waiting has become foreign to her long before the 'official' diagnosis. Time, for her, stands still or rushes backwards or forwards with no particular order. She was never great with being on time for anything (except for concerts and doctors’ appointments). A few months before our visit to the memory clinic where she took her second MiniMental Exam, she started having trouble deciphering the time indicated by the hands of her wristwatch. Once I noticed that she couldn’t read the time on her analogue watch, I bought her a turquoise digital wristwatch with a big screen, thinking that it was her eyesight that prevented her from seeing the time.
It was not about her vision.
It was about time.
Only when Mom makes a sound that signals a contentedness do I notice her wonder-filled gaze. Her eyes are wide open, engaged, fixed on the electrical power lines above the major intersection (where I’m still waiting for the lights to change). Not really the lines, but the solitary pigeon perched on them. She smiles and observes: “a bird.”
I find myself at a loss for words—how do I respond to that? I have so much on my plate right now, I can’t possibly rejoice upon seeing a bird, a stupid pigeon for fuck’s sake—I nod and smile and produce a sound that signals my acknowledgment of Mom and the bird and of Mom’s acknowledgment of the bird: “hmm mmh”.
She then continues: “he’s the keeper!” Hearing this intrigues me. I’m all ears, she’s got my attention now. “keeper of what?” I ask, curiosity mixed with scepticism. She pauses for a moment: “hmmmmm” and then responds with conviction: “of the clouds of course!”
And then, “It’s green” she says automatically as if her poetic interlude was as casual as the changing light on a major intersection. I put my foot on the gas pedal and we drive to the next doctor’s waiting room...
But at this moment, my mind is no longer racing, it stands still just like the solitary keeper of the clouds.
I think some pieces of me stayed at this crossroads forever.
Later that evening, at the kitchen table at my parents’ home, I tell Mom and Dad about Mom’s poetic interjection on the way to the doctor’s office. Dad is sitting. He’s chewing and smiling. Mom is standing near the table.
She does not remember, but when she hears me utter her words, Mom is happy—beyond the 'adult-happy' we come to know...Having abandoned the inhibitions that bind many of us, she spins on one foot and claps her hands. Continuing her celebration, she lands on the other foot, and claps once again. She’s laughing with delight at the sound of her poetry recited by her daughter—and her joy tempts me to recite it again.
Toronto, 11:44pm, 15 November, 2015