a walk with mother
DOWN MEMORY LAME
CHESHIRE CAT'S SMILE
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.
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
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.
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.
GRIM REAPER’S INSTALMENT PLAN
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.
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.
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
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
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
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.
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.
A PHANTOM BUS
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.
my ex-Air Force father was tilting at windmills all the way,
his judgment 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.
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.
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.
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
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
ART BELONGS TO DADA
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.
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
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.
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.
QUIXOTE’ AND THE PLACE WITHOUT MAPS
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.
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.
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
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
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.
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.
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.”
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
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
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.
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.
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