It started with the rice

It started with the rice.

A seemingly incidental telephone conversation, that unexpectedly marked the beginning of the end. She had called her Mom and her Mom had told her she had been looking everywhere for the rice.

“I don’t understand,” she had said to her mom, “you’ve always kept it in the exact same place...” and then the panic had engulfed and gripped her.

Tragedy so often hides within the detail of day-to-day mundanity. There had been more moments of concern recently, granted.

A few months prior to this realisation, due to the rice, she had begun to feel some trepidation. A dark shadow of paranoia had unwittingly started to snake its way into her psyche, with an unease that may have had an intuitive component.

Ultimately, losing one’s life partner of 50+ years was devastating, after a marriage so filled with connection and laughter, it was inconceivable. It was logical that her Mom would start to forget. So often those with dementia surrendered their memories, amidst their grief.

The loss which then transferred to a new generation and often increasingly pain for those closest.

Nature determined that we generally lose our parents first and yet it felt so unnatural. Slowly being torn from the only person who had loved her unconditionally.

It was logical and yet heartbreaking, terrifying, tragic and sometimes she felt like she was floating. Like gravity just wasn’t a strong enough force to keep her feet on the ground anymore.

There were, of course, lucid moments for a time. Reconnections and disconnections.

There were no more moments of peace, of tranquility, of feeling part of a family, though. It all crumbed from hereon.

Once the rice was forgotten, the structures around it began to dissolve, became mush. Like semolina, I suppose.

The next stages were like a form of psychosis. Stories of lights appearing, entities breaking in and supernatural encounters ensued. Visions of unreal circumstances and infinite miniscule particles of dust or debris were sought and eradicated. Over and over she watched her mother picking at invisible detritus, with almost manic determination.

Her siblings couldn’t see them the mess either, perhaps there was something. Maybe it was energy, perhaps here own eyes were not seeing all.

It wouldn’t have mattered, had it not been for the distress.

That was the worst part. Observing the confusion with the fear, interlaced with clarity - which resulted in a different type of distress altogether. The terror of the known, at times trumping that of not understanding her surroundings.

The empathy and deep bond they’d always shared, had to be changed.

Her deep intrinsic need to survive had started to emerge, like never before. The support systems were now destabilising. She was in deep water and there really was only one option – find some driftwood to cling to. Land was still so far away....

She'd never quite seen herself as an entity without the connection with her Mom. Most would have been shocked to hear this, she was a strong, intelligent, independent woman.

Yet at the core, deep down inside, life terrified her.

Being a human, existing in a world of selfishness and competition was alien to her. As a child she had hidden, as an adult she had fashioned a fantasy which screened her from reality.

She lived in her imagination, dodged conflict, and side-stepped responsibility expertly.

This was all to change of course.

The next loss was her sister. They had been close. Seemingly anyway.

Her older sister had been the one who carried her around as a child, who first introduced her to romance through the tales of her own burgeoning love life.

Her sister seemed to have it all and yet her Mom had alleged that she was jealous of her... Her height, her hair, her youth, her freedom. To somebody who had fabricated a false reality this seemed anathemic.

Her sister had courage, love, children, a degree and a large house.

As the youngest she recognised that she’d had a closer bond with both parents, she could see how that may be enviable. And yet her life was hedonistic, risk-averse and she’d failed to find love. Until recently.

Thank God for him. He was as scared of life as she, as creative and befuddled by the world too. His heart was beautiful though, and it was his heart that had kept hers beating.

He'd been there when her sister decided she never wanted to speak to her again. She wasn’t absolutely sure why, but she assumed it was because she’d had a secret breakdown. As always, hiding all of her vulnerability. Masking, disappearing, surfacing long enough to muster the fake smiles.

Barely anybody knew her.

Her sister likely attributed her behaviour to negligence, immaturity, a decision to not be around. She likely never suspected the truth, for a moment. That every day had been panic, despair, agoraphobia and all the other hallmarks of PTSD.

Did anyone ever suspect? Did anyone ever know when somebody was completely crumbling inside?

Would they care if they did? Was her sister, after all, celebrating the descent of her secret nemesis.

Maybe.

She was too scared to reach out, to find out. So she didn’t.

In usual cowardly style, she allowed the contact to fade away. Avoided experiencing what her suspicions had already lived out, vividly.

She focused on trying to move forward each day, to eat, to get through, to find other lands by vicariously watching the stories of other lives. Allowing their pain to be hers, so that she could slowly grieve. Recover. A little at a time.

Grief is strange when the person is still living.

It feels selfish and incomplete.

It was now she who was the misunderstood.

A few years on and her Mom was in a home, looked after. No longer did she beg to go home – back to the house she had lived in for 50+ years.

The moments of clarity no longer occurred. Her family were the carers now and she only responded to them.

Seeing her youngest daughter meant nothing to her. The only glimmer of sentience in her eyes shone out as contempt.

Her quizzical expressions were no longer, and her mumbled memories of her own mother had ceased. Now it was she who said to her mother, “I don’t understand” as her Mom repeated a mantra over and over again.

“One two three four five six seven, all good children go to heaven.”

Was this aimed at her? She knew she’d failed.

She'd not been able to move in and care for her mother. Her empathy had floored her every moment, she was barely capable of managing her own needs at that point.

It made her pathetic though and she had to live with that.

Perhaps the failure was that she hadn’t taken her Mom from the care home when she had first arrived. Her mother had begged her to set her free. At that time when her Mom was still aware of a true home that she ardently missed each day.

And she’d walked away. Had to leave amidst the pleas.

The guilt of that still echoed within the chambers of her heart. She’d had no choice. But the guilt.

Maybe there was no way not to fail.

She couldn’t have prevented this descent into mental chaos, which had now resulted in a vacant stare.

Why did she still feel like this was her fault in some way?

As if she somehow should have been able to swoop in and save her Mom from all of this?

Why is it that we feel culpable, as if our own pain, loss, grief, isn’t enough.

We still hurt ourselves more with thoughts of what more we could have done.

Logic says that we have so little say, in the end.

That our parents with dementia have simply become lost in translation, whilst their souls await the true liberty of crossing to the other side.

And we....are we ever free again?