The Cheshire Cat’s smile – one family’s experience with dementia

article and photograph by Geoff Olson

It started, as dementia often does, with language. In her late seventies, my mother began to hit speedbumps in her bedtime reading and was unable to recognize words she once knew. Less than a year later, this former social dynamo was a shrunken wraith, sitting at my side with a plush toy duck in her lap. “So, darling,” she said, patting the duck on the head and gazing into its fabric eyes. “So, darling,” she repeated, unable to say much else. She turned to me and laughed and I laughed too. And it was kind of funny; she had attached her earrings to the duck’s head.

Back when my mother still had insight into her decline, and feared for the future, my sisters and I made a pact with her. Whatever happened, we would support her all the way and try to keep our sense of humour in the process. We agreed to laugh. My mother, who was always the best laugher among us, thought that was a good plan.

We managed to keep to our pact over the months that followed, although there were plenty of humour-free moments. On her first visit to a neurologist, my mother hit the jackpot at a simple cognitive test for dementia (questions like what day is it, what season, what kind of car do you drive, and so forth). Settling back in his chair with a pen to his lips, the neurologist asked me if anyone in the family was concerned about her driving. “No,” she responded, and I gently but firmly disagreed. He revoked her driver’s licence on the spot and this earned me some blistering, short-term resentment from my mother, who blamed me for consciously curtailing her autonomy. But the resentment did not last. Within months, she had forgotten about the incident, her car and much else.

The prognosis was not good and there was nothing science could do for Mary Elizabeth Olson other than alleviate her anxiety through medication. The doctors diagnosed her with frontal-temporal lobe dementia, which progressed very quickly. It appeared a cascade of small strokes was responsible for her cognitive decline.


The Grim Reaper’s instalment plan

At age 65, there is a one in 20 chance of developing dementia. By the age of 85, the odds are one in three. Currently, there are no known cures for dementia, an umbrella term for age-related cognitive decline, which includes the most common form, Alzheimer’s. Mild cognitive impairment can shade into full dementia and there is little evidence that brain fitness exercises like crossword puzzles or card games work to delay the condition. It’s the Grim Reaper’s instalment plan; each passing week or month, a few more memories or skills are scythed away.

The bigger picture is alarming. About 35 million people across the world have dementia, according to European researchers. They estimate this figure will double every 20 years, to nearly 66 million in 2030 and 115 million in 2050. Not surprisingly, the costs associated with caregiving for dementia patients are staggering. The global cost of dementia will likely exceed $604 billion this year, or one percent of the world’s gross domestic product. In Canada, we are looking at a public healthcare catastrophe in the making.

As a family, we were better off than many others in a similar situation, in terms of options. My parents had saved a modest amount of money and were living mortgage-free. However, my father had been in poor health for almost 10 years and my mother had been his caregiver. Their roles had now reversed. My dad was something of a control freak and this was the ultimate out-of-control situation.

During the weekdays, mom went off to the social club at their condo complex, to play bridge with her friends. But her self-insight was now in decline, along with her speech. She was unaware her speech was turning to jabberwocky. What she did know was that her bridge associates were starting to avoid talking to her. She became convinced they were no longer friends at all, when, in fact, they were greatly concerned over the growing language barrier.

Within a year, Mary Elizabeth Olson’s self-insight had evaporated. She stayed home, where her confusion deepened and shaded into an extended reverie, punctuated by compulsive actions and episodes of testiness. I came to dread her phone calls, which would start with prolonged silence and invariably end in stammered words and confusion. She kept asking me for assurance that “they” were not going to put her in a “fill.” No, of course not, I’d reply. Later on, we figured out she meant a long-term care ‘facility.’

My mother was the glue that kept our fractious family together and as she came apart, we struggled to find our own binding force. We wrestled with ‘momspeak,’ trying to decode the ingredients that went into her word salad. She would tell us in halting words about some blonde woman who would look directly at her but say nothing. We later figured she was talking about a weathercaster on a local news channel. Delusional thinking, which often accompanies dementia, had joined her creeping aphasia. Anxiety made it a threesome. For a time, these were my mother’s daily companions after the absence of her bridge partners.

“I don’t know anything, not a thing,” she said to me in the kitchen one day. “I know it all. I know about it all!” she exclaimed a few hours later. That about covered it. One day, my mother brightly announced that one of her friends – one of the visiting angels of mercy from the bridge club – had told her she’d “live forever.” The next time I visited, I found her clutching the clothes in her bedroom closet. “I’m going to die,” she said, her eyes full of tears. I assured her she wasn’t and asked my dad if she was getting her medication. Sure enough, he was missing the dosage schedule. Risperodol, an antipsychotic drug, kept my mother on an even keel.


Catching a phantom bus

For a man to lose control – emotionally, economically or any which way – was seen as weakness or failure by my father’s generation. Dad was now doing the minimal chores mom could no longer perform, and doing them poorly. He was experiencing chronic pain from osteoarthritis and he was in deep denial, refusing to accept that his wife was losing it. My sisters and I were doing tag-team duties, going to their house to attend to their basic needs, taking my mother out to buy groceries and other chores. As one benchmark of domestic self-sufficiency fell after another, we broached the subject of home care. Deflated by the unmanageability of his domestic situation, he reluctantly signed off on power of attorney to his children.

But my ex-Air Force father was tilting at windmills all the way, his judgement clouded by heavy medication. “You’re getting away with murder!” he roared, after my sister and I insisted on paying for extra help. He reluctantly agreed to this, but then changed his mind, telling home care workers arriving at the apartment to go away. There was no need for extra help, he insisted, even though my mother was now incapable of preparing their meals and my father’s culinary skills went no further than the can opener.

This is where I drew the line. I told my father this wasn’t about him, it was about his wife and our mother. One sister took up the burden of paperwork and medical arrangements and, later on, another sister stayed with my mother for an eight-week stretch. I dealt with miscellaneous duties and the frequent emergencies, like when my mom began to pack her purse with random objects and wander off to catch a phantom bus at the corner.

The home care workers settled in for their shifts and my mother adapted well to their oversight, but now she was terrified of visits to the doctor. Even a simple eye test agitated her greatly. We no longer saw the point of taking her for an eye exam, or anything else minor, since her first impulse was to bolt from scary medical equipment.

Luckily, the Vancouver Coastal Health Authority proved to be a godsend for my mother, and us, as we navigated the rising waters of her cognitive Katrina. At the outset of the decline, they were ready with a geriatric team to assess her condition and help steer us through the storm. Their professionalism was second to none.

Having gone through all this, and recognizing the costs of home care and semi-subsidized extended care, I think, Good Lord, how are aging boomers going to afford their own decline, to say nothing of the Gen-X wageslaves surviving by contract work in an unstable economy? What future is there for the aging seniors of a shrinking middle class? Aging millionaires like the Rolling Stones may be able to afford their approaching infirmity, but I can’t imagine how their aging fans will handle their own Steel Wheels Tour.

Her art belongs to Dada

One day my mother greeted me at the door, her hands out by her head as if she were pantomiming a large hat. “You’re here for the cheese?” she asked with a grin. I had no idea what she was talking about. I laughed and she laughed too. “Her art belongs to Dada,” added my sister, who always believed that when it came to puns, it was better to give than to receive. We were all keeping our part of the humour bargain as long as possible.

The only thing that hadn’t changed was my mother’s joy at recognizing us and her ever-present smile. As the rest of her began to fade away, the smile lingered on, like Lewis Carroll’s Cheshire Cat.

I discovered another companion for my mother: music. In his most recent book, Musicophilia, Oliver Sacks notes the well-known health benefits of music, for both the healthy and the sick. “It is a remarkable thing that even in the worst cases of dementia, that there is still a self to be called upon, even if music, and only music, can do the calling,” writes Sacks. My mother always appreciated the CDs I made for her and I took to making more of them. “Isn’t that lovely,” she’d say, sitting on the couch with her duck, listening to the soprano voices weave through the Flower Drum Song. She would sometimes lose herself in music, taking halting steps around the living room, lightly clapping her hands together.

Mom was descending further into silence. The hide-a-bed in the living room was pulled out in the daytime for her to rest. When I dropped by for a visit, I would sometimes lie next to her, while my father watched TV in the den. I’d hold her hand and try not to cry so I wouldn’t upset her.


‘Dad Quixote’ and the place without maps

‘Dad Quixote,’ shuffling around the apartment in his pajamas and narcotized by a television blaring CNN, continued to tilt at windmills. He could be generous, but only on his terms, when it suited him. Mom’s dementia did not suit him. Twenty-four-hour home care was not an option, he informed us, though we went ahead with plans anyway. One night, he slipped and fell in the bedroom and broke his hip. When the home care worker arrived at the front door in the morning, there was no response to their knocks. (The door was locked with a chain on the inside so my mother could not wander off.) Firefighters arrived and forced a window to get in. My mother stood in the kitchen clapping her hands together as the men tumbled through the jimmied window. Apparently, she thought it was a party. “Your mother just ignored my calls for help,” my father told my sisters later in the hospital. To the very end, he was unable to fully accept his wife’s condition and not just because his default setting was denial. He loved my mother with a passion.

He died in the hospital a few days later, with me at his bedside. A deeply taciturn yet honest man who loved his children, he was at peace at last. My mother burst into tears when she saw me later that night – she knew enough to know the strangely familiar man, who so often annoyed her, was gone for good.

We were committed to keep mom in her own home as long as possible. One of my sisters moved in and, with the support of private care workers, we managed for a few months, until my mom began to refuse assistance in personal hygiene. Thanks to the Vancouver Coastal Health nurses, she was in an extended care facility nearby within days. Over the next few months, her words dwindled to a few pleasantries and eventually she grew silent. Often she appeared vacant and seemed like she was hardly there at all. But the Cheshire Cat smile always returned on the next visit.

In western culture, there is a persistent notion that aging is some kind of trick that nature plays on us, a cruel hoax to be remedied – or at least postponed – by science. The only sure thing in life, death, is regarded as existential Ebola. Yet if there’s one central lesson science teaches us, it’s that permanence doesn’t last. Without the continuous game of transformation, there’d be nothing happening at all. For hairless apes with big brains, stuck halfway between the scales of the quantum and the cosmos, this is the entrance fee for self-consciousness: the full awareness of our own temporality.

“Science has ‘explained’ nothing; the more we know, the more fantastic the world becomes and the profounder the surrounding darkness,” wrote novelist Aldous Huxley. My mother has retreated into that no-man’s land between light and darkness. We’re losing her to a place without maps – a place to which we will all return. Considering how recent and changeable our science, it would be folly to attempt a cartography of the unknown. Post-mortem existence or nonexistence? We will just have to wait to find out –or not find out.

In 1950, a distraught father who had lost his young son wrote to Albert Einstein, asking for some comforting words. Einstein’s response: “A human being is a part of the whole, called by us ‘Universe,’ a part limited in time and space. He experiences himself, his thoughts and feelings as something separate from the rest – a kind of optical delusion of his consciousness.” We are part of something much greater than our ego-bound conceptions, Einstein insisted. And there are times when the veil drops, often during moments of transformation, trauma or illness – and even joy or ecstasy. At these times, there are hints that a human being may be something more than just a quivering bag of protoplasm with a best-before date.

My mother knew nothing about my father’s condition in the hospital. During his final moments, she was at home at their condo with my wife. At one point, she shuffled to his room and waved at the bed, saying goodbye. She then took my wife’s hand and toddled over to the condo balcony, overlooking the city. “Goodbye, goodbye,” she repeated, waving to the sky. “It was totally abnormal behaviour for her,” my wife said later. “It made the hair on the back of my neck stand up.”

A flickering light

My father called my mother’s decline a “bloody crime,” and the whole thing has been undeniably tragic – especially his own barely articulated rage against the dying of the light. My sisters and I were lucky in a certain sense, considering what some families go through with parents in the grip of dementia or Alzheimer’s. My mother was not abusive or violent, just unpredictable. As time went on, her condition wasn’t so much awful as autumnal; she became like a brown, withered leaf still attached to the branch, with a flash of green at the stem.

In past visits, I have held my mother’s hand with its paper-thin skin. It wasn’t so long ago that my hand was small and fragile in hers. Every day, she is growing more insubstantial. Her smile still weakly returns, though less frequently. Her toy duck sits by her in the bed, untouched. A small iPod on her bedside table plays her favourite music, but there is no indication the melodies are reaching her. We play the music anyway, unsure of what she can and cannot receive. When I have brought flowers for her, I would hold them close to her nose. “Ohhh,” she said once with a swoon. Inhaling the aroma, she momentarily reconnected to the world with all its fragrant, tactile particulars. But flowers no longer elicit a response.

It took only two years for this transformation, from her fumbled bedtime reading to her purgatorial state in extended care. She has been off all medication for some time and is seemingly calm and at peace. We can detect no agitation. Her expressionless face has softened her wrinkles, making for a strangely youthful appearance. When I sit next to her, it is like looking into the eyes of an infant.

And if I wait long enough, the Cheshire Cat smile returns. I am not certain she recognizes me anymore; likely not. Yet I’ve been having the strange sense that my mother, in her final days, has become something of a teacher to me. The exact lessons are hard to articulate. Everything in Mary Elizabeth Olson’s life has been burned away, her memories of an active life gone like cinders in the breeze, along with any coherent sense of self. Yet this adoring countenance flickers away, like a glowing ember. After all the miseries, fear and confusion of the past two years, this seems to be her remaining essence, unmediated and unmedicated. Soon a curtain will descend on this as well. Her vegetative state will deepen and we will lose her to the place without maps.

One of the last times my mother spoke was several months ago, on a bright sunny day. She was hunched in her wheelchair and I went over to open the drapes. A shaft of light fell upon her and she responded in a quiet, awestruck voice, “How beautiful.” I believe it was a moment of recognition. Like a survivor stepping through the rubble of war, the light within her had made its way across broken neural pathways to express kinship with the light outside her. In a transparent moment of lucidity, that final spark was mirrored in my mother’s blissful, radiant face.

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