CARNIVAL WORLD – a dementia experience

Smoke and Mirrors

Smoke and Mirrors

Carnival World

To the well-organised mind, death is but the next great adventure

J K Rowling

Roll up! Roll up! Get your tickets here! Don’t miss the greatest ride of your life! The rollercoaster ride to end all rollercoaster rides!

The unseen showman’s voice rattled and echoed through the empty spaces. The lights became flickering pools at the edge of the darkness. The signs were tattered, worn and flapped without enthusiasm.

This place had a familiarity about it, it was something unidentifiable, and it hovered on the edge of his awareness. He reached out stretching, searching. He could not quite nail it.

The images before him swirled in and out of the light, he tried to touch them and they danced hauntingly out of reach.  Smoke and mirrors, they chanted softly, smoke and mirrors.  They laughed, not with him, but slyly at him.  He was lost.

Life had been very different since arriving at this place.  All that has gone before was no more.  Uncertainty lay ahead. He was drowning in fear. This was supposed to be an adventure, a new beginning. They had promised a new phase to be lived, a safe place to grow treasured memories. Now there was nothing but confusion, emptiness and darkness; smoke and mirrors.

He was tired; he sat on a nearby rock, just to rest for a while.  The scene distorted, changing, suddenly. He was sitting at a table in a café. There were people all around, laughing and enjoying their macchiato soy lattes.  A woman was with him, she looked familiar, she smiled at him as a mother smiles at a recalcitrant child. She was not his mother. He would remember that, he knew her well, but how did he know her?

Roll up! Roll up! Get your tickets here! Don’t miss the greatest ride of your life! The rollercoaster ride to end all rollercoaster rides!

He sat quietly enjoying the ordinariness of the scene. As he watched the glass box slowly descended the building, it stopped, the doors opened, and he walked out.  How could that happen, he was sitting here in the chair? He was sitting at the table with her, damn what was her name! What the hell!  He, himself, walked towards him. He was up on his feet he was shouting waving his hands as if to ward off an unspeakable evil, this was not real, but he kept advancing. He panicked. He was starting to hyperventilate. He closed his eyes tears flowing.

He wondered what would happen if he touched him, will one of us explode.  Two of one cannot live in the same space in time, he knew that. He felt her hand on his arm, he heard her soft soothing voice, and he fell backward into his chair.   He opened his eyes, he was bathed in sweat, the laughter and chatter had ceased. They were all looking at him, talking about him. He looked for the other but he had vanished, in his place was a young boy in motor bike leathers, kneeling beside him, talking to her asking if everything was alright.

‘Talk to me’ he screamed at them, he screamed at the world ‘talk to me, I am still here I can see you and hear you, I am still here.’

‘It’s alright darling,’ she said, soothingly   ‘it’s over now, you’re safe, but you gave this young man quite a fright.’

He spoke the words he had fought against, ‘who are you?’

She looked at him her face a careful mask, but her eyes mirrored the unspoken pain the question caused.  In her soft voice she said ‘I’m your wife.’

He could not bear the pain any longer; he needed to be gone from this place.  The veil passed over and he was there no more.

In the meadow the blue grass crackled under his feet as he walked on it and the perfume of the chocolate brown flowers filled the air.  He had something he needed to do what was it?  What was so important that it nagged at the emptiness of his mind?  There are four large black ducks swimming on the pond, they barked as they made their way to shore. He had a shepherd’s crook to guide the birds to their roost. The cat sat patiently watching, waiting for his order.

‘Round them up, round them up,’ he whistled at the cat.

The cat looked at him, turned its back, then raising its paw it began to wash its face. The black brutes charged at him, fangs barred and growling.  He hit out at them with his crook trying to distract their charge.  They bit, taking chunks out of his leg, but there was no blood, only pain and his leg lay apart on the blue grass.  God no!  They had turned on her, how did she get here? He had to protect her. He struggled to rise, the severed leg hopped about on the grass and then the noises in his head became intense, the whooshing made it impossible to concentrate, the surface unravelled beneath him, he fell screaming into the blackness.

He continued to drop and yell, thrashing his arms and legs and then he stopped, he could go no further.  The unyielding thing he could feel under his body stopped him falling into the abyss.

He felt hands, grabbing at him, restraining him, holding him.  The soothing voice repeated, ‘you are alright, you are safe.’  Baby-like he blubbered for his mother, but she was not there. She was gone and could not return.

‘It will be alright, it will be alright’ she sat on the floor and rocked him as she held his frail body in her arms.

He cried softly without noise and the tears flowed. ‘How long?’  He asked ‘how long this time?’

‘Not long,’ she said as she held him close. ‘I love you,’ she whispered into the darkness ‘I love you.’

He croaked ‘who are you?’ his throat was raw and dry.

I am your wife’ she responded.

He looked at her and for a brief instant, he saw her as a beautiful young bride and knew she was his angel, his beautiful wife, but he still could not remember her name.  He smiled through his tears.

She helped him back to bed and making sure he was comfortable, wearily went back to her own room.  In the darked light she looked at the clock it flashed 1:15am. The night had just begun.  She lay on the bed and pulled the quilt around her.  The monitor‘s single red eye blinked as he moved in his bed.  She lay watching the shadows on the ceiling, waiting.  Smoke and mirrors, they chanted, smoke and mirrors.

She revelled in the softness of the quilt, in its warmth and safety. She burrowed into it making a cocoon hoping it could protect her from the horrors that also haunted her nights. Her fingers traced the fine lines of quilting, picking out the patterns in the darkness. She remembered when she made the quilt.  She remembered the children who had played on it, been wrapped in it when they were ill, and the baby photos taken on it. There were the picnics they had taken, both as a family and as a couple. They would spread the quilt on the sand or the grass and together they would watch the children playing or if it was BC or AC  (before children or after children), and it was a private place, sometimes they would make love.  They hadn’t made love in such a long time. Another thing they had lost. There were so many memories patched into this piece of fabric.

Where were the children now when she needed them to help her through this nightmare? They are leading their lives, she answered her own question. The trouble was they thought she was exaggerating, as he always had good days when they came to see him.  Why can’t they see him like this and understand how this fluctuates. She was angry with them, but she also understood that they wanted to distance themselves. She retreated further into her safe place, crying softly, as the darkness of his night overwhelmed her.

They had been together for so many years, the good and the bad, and now she was facing the unimaginable. She was losing him and there was not a thing she could do to prevent it.  She dried her eyes with a corner of the quilt and smiled wryly to herself in the darkness. He was still here in the physical sense and on the good days he knew who she was. The saddest thing was that most of the time he knew who he was, and after the “event” mostly he would remember the terrors that invaded the darkness.

When he had been diagnosed they were relieved that it wasn’t Alzheimer’s.  They had actually celebrated.  Little did they know then what life with Mr Lewy would be like.  Now she thought, she actually envied those with Alzheimer’s. They were lost to the disease, but most seemed happy enough.   The second specialist they had seen was so different to the first.  Initially they had been told to go home and make the best of the time they had left,  five to seven  years he told them, live your life like there are no tomorrows.

No advice. No warnings. Just a cart load of medication, and that was that, and a booking to come back in six months.

The changes were so slight at first, but then the disease ramped up, its progression terrifying them and ripping their lives apart.

As she lay in the darkness she wondered what was normal.  Irritatingly those nagging thoughts wiggled their way into her mind.  These were the times she wished she didn’t know the answers.

The house was no longer her home. It was transformed, a hospital with all the bits and pieces and smells that accompany those places. He was in diapers; she could not use the word nappy, day and night now. How he hated them!

The red light blinked more rapidly, its warm glow was not comforting; instead it was a strobe light signalling trouble ahead.  She turned her head, her senses alert, listening for the first signs of the hallucinations. Maybe he was simply restless. She breathed a small prayer that this was the case.  She looked at the clock it is 3.00am.  Had she been asleep? She was not sure.  Sleep did not come easily these days and was never restful.

“Help! Help me!” the soft voice was distorted slightly by the speaker. “Please help me!”  She slowly unwound her cocoon and put on her dressing gown and slippers.  It was cold, she needed to keep warm, and she could not afford to get sick.  Her eyelids were heavy and her mouth was dry. A cup of tea would be nice, she thought, as she made her way down the hall to his room.

There is a night light, so there is no need to turn on the harsh overhead light. He is sitting up in bed staring.  He turns his head towards the sound of her footsteps.

“Help me! Oh please, dear God help me!”  She sits beside him in the soft light and holds his hand in hers.

“Tell me what you see,” she says soothingly.

His window is open and she can hear the sounds of the waves rolling in on the beach. It must be high tide, she thought. She remembers they bought this house because they could hear the sound of the sea at night.

His legs wriggle and squirm under the covers. She checks to make sure he is dry.  He grips her hand tightly.

“You will get cold.” She assures him she is warm enough.

“They will get you, you have to hide,” he pleads with her to go, but does not release his grip.

She holds him and says she will stay with him until they are gone. He strokes her arm and is quiet for a while.

“They’re here. They’re all around us. We have to be quiet and get behind them.”

“Who are they?” she asks “Do we have to hide? I can barely hear them”

“They are coming up the beach, didn’t you hear the shots?  They have passed the sentries. Please God the boys are alright.” He starts to shake uncontrollably.

“If we are very quiet they will pass us by.”  She knew this scenario well; she hopes she can talk him down.

“They are on the beach.  They are looking for us. They know we are here. They are shooting at the boys. We have to stop them.”

“The boys are alright they know how to look after themselves. They will have taken cover in the caves”

“They’re returning fire. Can you hear them?  They’re turning them back.”

She puts her finger on her lips, signing for silence and they sit, in the darkness not moving.  He is tense, straining every muscle.  Eventually his body relaxes. She knows it is almost over.

“Can you hear the boats?”

“Yes I can.  It sounds as if they are pulling out. What do you think?”

“They’re leaving,” he cries “until the next time. God I am such a coward.”  The tears spill down his face and the sobs break free. “I am so fearful.”

She holds him tight, rocking him, she is crying.

“You are the bravest man I have ever known.”

They are still in Lewy World. She tries to still his fears. She wonders how long they have sat this time, wrapped in the dark cloak of his nightmare.  Smoke and mirrors.

“We are safe now.” she says, stroking the face she knows so well. She holds him tight against the nameless fears that only he can see.

The darkness wraps its soft arms around them both and quietness follows as finally he sleeps.

She gently untangles his arms and smooths the covers. How long did she sit holding him, five minutes, ten, minutes an hour or was it two?  She leaves the room and heads for the kitchen for that cup of tea.   As she turns on the light she looks at the clock above the stove it is 6.30am.

She sighs softly. It is time to start the day. She plugs in the kettle and waiting for it to boil, she prepares his morning medications.  The first task done, she gratefully enjoys the silence and the solitude. She drinks her tea, savouring the warmth and comfort it brings while watching the dawn brighten the sky. She can hear the surf on the beach and the lorikeets are flitting noisily around the garden waiting for her to fill the feeder.

The Blue Care caregiver will be here soon to shower him. She hopes they are running late this morning, he could do with the extra sleep.

Another round on the Lewy rollercoaster and they have made it through the night to another day.  It is an emotional ride for them both and she prays today will be a good day. Perhaps, he will remember her name that would be nice.

She sighs again; her days now are nothing more than smoke and mirrors, as they are manipulated like puppets in Lewy Land. She wonders who he thinks she is.

She smiles and cries softly as she hears the call of the unseen carnival showman;

Roll up! Roll up! Get your tickets here! Don’t miss the greatest ride of your life! The rollercoaster ride to end all rollercoaster rides!

About lindandsam

Linda is a poet and writer. As a mature aged student, she completed a Bachelor of Creative Writing. Master of Creative Writing at the University of the Sunshine Coast (USC). Linda has also completed the Diploma of Family History Studies at the University of Tasmania (UTAS) and is looking forward to further post graduate work. Published in the USC Storyboard, 2015. Self-published ‘Where is Gedhum Choekyi Nyima?’ For the Tibetan Children’s Village, Dharamsala, 1997. She now lives in Bass Coast in beautiful Wonthaggi and shares her life with her partner and their four-legged fur baby Hugo Boss

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