The months of July and August were hard and her loving family gathered as the disease denied her body proper nourishment. Janine was always a planner, though, and we worked through a bucket list of things to do and places to see. Our attempts to give her dignity in passing by obtaining an end-of-life medication through the medical community were rebuffed by doctors who were more concerned about their malpractice riders than aiding a terminal patient. This forced us into pursing the VSED (voluntary stopping of eating and drinking) route, and this was a lingering process of eight days with increasing pain and wasting away of muscle and cognition. The pain was exacerbated by the hospice care protocol of stopping all of Janine's medications under the mistaken impression that what remained built up in her system would see her through. This assumption was a grave error and a decision made by a non-MS doctor. If you are a terminal patient please question this protocol because it will make your last days nearly intolerable for you and those around you.
Janine spent years planning her last days to ease the burden for those of us who remain. I am a writer, and three years ago I wrote a short story which I subconsciously based on how our life was changed by this illness. What follows is really her story. Bless all of you for keeping the faith with her though all these years, because you meant so very much to her. I will be closing this blog at the end of the year.
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Caretaker, Caregiver
John O’Guinn
The doldrums of
life held time for him to love the old house. In its day the home commanded the
neighborhood; the clean lines brought to mind a picture of a boat running
before the wind on the lake, in late afternoon, when the sun falls sleeping
beneath the gentle hills. The eaves stretched forth like spinnakers to embrace
an essence that was life and everything vital to the home’s definition in the
world, and tatters stood out where unknowing moments had tested its endurance
with brutal touches.
From his spot on
the veranda he dug his thumbnail beneath the peeling paint on the rail and
worried between the cracks until flakes spun away to land on a realtor’s sign
and among the questing irises that bordered the lawn. The front door was open
to cool and tranquil chambers and he had closed the dulled aluminum screen when
he came out. Now an insect buzzed against the interior mesh. Delicate wings
fanned out more quickly than a blink as it climbed the screen and probed the
barrier for release into the limitless expanse of cloud and sky. He watched the
small form meander along a flat land until he heard a cough escape from the
house then he abandoned the porch and went inside.
His wife was awake
in the emptied room and he pulled a table chair across the wood floor then reversed
it and sat between her bed and a looming bag of medical supplies and clothing. In
the empty space of the living room he was reminded of the walking times when he
accompanied her into cavernous women’s stores. With impatience he waited in the
husband’s chair outside of the changing rooms while the women drifted away with
their small victories, and he felt buried between the racks of dresses as her
rattles of fashion skittered from behind the door.
Before today he
had danced with her in this room of wainscoting and light when the hollowness
was supplanted by their dreams and the trappings of family that came and left
like a breeze upon the water. Children had lived flashing moments within the
house to make touches on doorframes and walls and embrace a world expanding
like a paper fortune teller, and in his mind each nick and scratch was a word
of unbridled joy. Their son and daughter were all grown up now and lived
thousands of miles away, pursuing the heart of fortune with friends who
struggled to find meaning and definition under the keenly-felt disappointments.
Her husband
reached over the bedspread then laced his callused fingers with her pale hand
until the palm was covered like a scrap of burlap laid across a cameo. She
dropped her crossword puzzle into her lap and looked past him to the street.
“The movers are late.”
He curled his
fingers a little as a gentle embrace. “Maybe they missed the turn. They’ll be
here.”
She sat up quickly
and became a fluttering bird. “Get me to my chair. We can have them take this
damned bed too.” Her hands fumbled with the bed covers then the bed lowered as
she pressed the buttons on the control.
“They may not have
room –“ he began then halted to sidestep the old argument. The bed had cost a
lot, even with government aid. Its rails and motor were her safe horizons and a
bulwark against an illness whose slow trickle made so many things beyond her
control. Better beds were on the market with massage features and air pads but
she was adamant that this was her bed, not a patient’s bed. He always lost to
the comfort of familiarity.
When the bed
stopped its descent he went to the back of the house to her wheelchair then
turned the machine on and waited. When the chair was ready he stood at its side
and operated the control stick as escort, guiding the cumbersome vessel in a
zigzag fashion to stagger past empty rooms that were vessels to the days won
and milestones encountered by a family. The dancing left with the children, and
the couple’s life contracted into a tight ball of unfinished sentences and desperate
routines as the dreams fell away from their life like old paint. The days beside
the lake transitioned from the anchor of a single cane to a lurching world of
double canes and a scaffold-like walker to a sturdy power chair that could
never know the intimacy of the two-step, and as he returned to the living room
with the device its wheels ground ponderous in widened doorways of personal
space. He heard the weight of the machine’s passing spread across the floorboards
as a wake of groaning sounds on wood, and a tired fanfare to complete a poised
room.
With the chair parked
parallel to the mattress he lifted her across to the seat where she settled onto
its custom molding. Her hair was disheveled from the pillow and his hand
smoothed the long strands flat at the crown. With an abrupt motion she rolled backward
and turned away to cross the floor and gaze outside at the scarlet roses on her
trellis. On the day they bought the house she had planted the bush and nailed a
trellis to the siding, and over the years the plant had embraced the
latticework and climbed wavering above the eaves. Now some rose petals were
dotted with black spots as wide as a penny, and her mouth formed a thin line at
the intrusion on beauty. “We need to take care of that. Probably a virus on the
leaves.” She blinked then grabbed her lower lip with anxious teeth and let go.
“Somebody should fix it, anyway.”
He came behind her
and draped his hands on thin shoulders as the sun lit the porch then was held
hostage by scattered clouds before it broke free again in a whirl of light and
shadow. His fingers kneaded the skin beneath his hands then he stepped between
his wife and the window to get her attention. “Come with me.”
Her free hand was
cradled in his palm as he led her past the bed and into a dining room pristine
and unblemished from lack of use. “What am I supposed to see here?”
His cell phone glowed
with its promise of immediacy and he squinted at the icons then punched his
thick fingers against the glass surface. “Ssshhh, almost ready.” The phone fit
snugly in a corner and he led her from the doorway until she rested before him in
the center of the floor. He towered before her, self-satisfied and hushed, and
waited.
Her face wrinkled
in a familiar impatience. “Well?” Music scurried like a mouse from the corner.
The melody scrabbled up the walls and rebounded from the ceiling and trembled
the baseboards as he took her left hand and placed his palm over her right and
the bulky controller. He shuffled his feet across the wood and coaxed her to
follow forward and back and side to side as the controller clicked and clacked
and the chair swiveled to mimic his steps. He held her arm high and stepped
sideways while the machine rolled beneath the arch formed by their union to
dance a disabled minuet. His footsteps brought him in close and he circled her
in a tiny orbit then increased the speed of her chair and skittered backward
while holding her hand.
His body shifted
left and right while his toes moved just inches from the wheels, and when the
song ended he stole gulps of the room’s rarified air until another song played.
His legs were shaking but he danced on in a rhythm awkward and sincere, and in
the moment he sometimes misjudged the distances so that Bam! her chair caught
the wall in a pale gouge or a Screech! sang out distant and tinny as the frame
left its mark on the plaster. At these intrusions he pulled her back to himself
and the center; despite the exertion he felt lighthearted, so he ignored the
aching in his legs and staggered forward only to be knocked down by a sweeping
turn of her design.
He rolled onto his
back and laughed while tears ran off and matted the gray at his temples. The
boards creaked beneath the chair and he turned towards the sound and saw a
wheel stop inches from his head. “Are you okay?” she said.
He nodded and
rolled onto his knees. “Are you?”
She smiled a
little and rolled back to let him up. “I hit the walls a bit.”
His knee was sore
and he put his hands on his thighs to stand up. “To hell with the walls.”
She bit her lip.
“I don’t know, the realtor’s not going to like it.”
“To hell with the
realtor, too. Stinking commission hound.” He saw that she still held her lip in
a delicate capture as though it might leave her control, and he chose words of
reassurance. “Those things are an easy fix, and I’ll get my own repairman if
that’s what it takes.” His thumb rubbed against a mark and it came away
bloodless. “See? Just a little plaster and some paint and no one will know.”
The moment was
lost in an ad for car insurance and he retrieved the phone and struggled to
turn it off as his wife drifted away and returned to a familiar place. He
followed the receding creak of old boards into the living room and saw her paused
before a man at the screen door.
In four strides he
stood protective at the entrance. “Can I help you?”
The man swung the
door open and leaned into its frame. “Did you order a medical transport?”
He nodded. “I
think we’re all ready here.”
His wife seemed nervous
and he rested his hand on her shoulder. “It’s alright, honey. He’s driving you
to our new apartment.”
“Are you coming
with us?” she said.
“I’ll be right
behind you in the van. I just have to lock up.”
“I want you to
ride with us.”
“I can’t dear,
because I have to drive.” He rubbed her neck and she pressed her cheek into his
hand. “Don’t worry.”
The driver shifted
on his feet. “Is that her bag?”
His hand gripped
the twin handles and he slid the bag to the driver. “Here you go. Is there
anything to sign?”
The driver stared at
his wife, weighing her illness in a gawking appraisal of loss, and shook his
head. “We can settle up when we get there.”
He moved from
behind the chair and saw the strain beneath her eyes had found a home in the
hollows of her face. “We’ll be there soon. It isn’t far.” To reassure her he
stepped onto the porch and waited as she left the empty house and rolled outside
and down the ramp to the sidewalk. His keys were a tangle of worn metal and he
examined each key on the ring then double-locked the front door while the
driver followed a few feet behind his wife to an imposing transport van in the
driveway. The man put her bag in the front seat and lowered the lift, then he fastened
her seatbelt and secured the chair with wide straps that hooked to the outer
frame of the platform. The driver worked the controls and her husband turned
away as the lift rose and retracted into a shadowed maw.
He heard the
grinding buzz of another insect trapped in the false refuge beneath the mesh, then
he pushed the door closed before walking with measured steps and beyond the snow-flaked
irises until he stood beside the trellis. The roses grew thick at his shoulder
and he examined the blooms for a flower unmarred by blight or age. On uncertain
feet he stretched to grasp a blossom so tall and lovely above his head then
severed the stem to free its beauty from the vine. Down at the lake the wind
danced along the tops of the waves and prodded the surface to rise up on the
shoreline and he held the rose at his side and paused, enjoying the whispering
presence upon the body of water.
