Grief for Tragedy of Lost Mind

Grief for Tragedy of Lost Mind
The West Australian
Ros Thomas
Published: Saturday June 30, 2012
Section: Opinion

I find the elderly strangely beautiful. With their crepe paper skin and dimming eyes, lined up in the sun at the nursing home.

Some of them with a busy mind but useless body. Many more with robust bodies but minds clouding inwards, leaving reason and memory beyond reach.

This is the most awful thing about the ageing process. People you know and love who have pressed forward in their lives with their cleverness, their kindness, their bravery, suddenly forced into decline. A decline that proceeds, sometimes with imperceptible slowness, sometimes at great speed, to an irreversible end.

My much-loved grandmother marched into her 70s and faded into her 80s. Small strokes robbed her of her steadiness but her refusal to be dependent kept her at home, with my mum keeping vigilant watch.

It was stressful and life-altering. My mother worked full time, I was a teenager, and at 82, her mother was becoming a child.

Other family were interstate, and the responsibility was my mother’s alone. She never described it as a burden, but even my immature self knew it was.

Five years went by cooking one extra dinner, popping in daily and small panics when she took too long to answer the phone, and the endless management of a life that could not manage its own.

When the time came, my nanna fought her move to the nursing home with everything she had, and my mother’s guilt was palpable.

Almost every one of us has had a glimpse into the shadows of human frailty. It’s not a place you ever want to go, but we’ll all end up there if we can hang on long enough.

Now you hear of dementia and Alzheimer’s everywhere, like it’s a communicable disease. A colleague and I eat four brazil nuts a day in the hope of warding it off (someone told one of us selenium is good for brain function). But with a family history of dementia for both of us, we discuss with wry humour our dread of being the one who picks the short straw.

A lovely friend told me that caring for an elderly relative, especially a parent, forces you to change places with them. Her mum had become nurturer to her grandmother, and it was uncomfortable to no longer have a mother in return.

When the move to a nursing home became inevitable, she told how her mum’s greatest relief was to be able to return to her rightful place as daughter, because someone else was now doing the “caring”.

I have just experienced again the ageing process in all its indignity with my favourite uncle, my mum’s only and gifted brother.

To watch him regress to being almost infantile at the age of 76 was frightening, but at times quite lovely. It gave him an instant bond with my children, especially the small ones, who delighted in his gentleness and quiet concentration at their baby games.

As his dementia progressed, he became their absolute favourite for playing hide and seek, seeing as he hid in the same spot every time.

He was only as good at puzzles as they were, and like them, he startled at loud noises and needed help cutting up his dinner.

But the great tragedy of his twilight years was the swift unravelling of his brilliance. As a concert pianist, academic and mathematician, that disease robbed him of all he had been.

First it stole his ability to pick left from right, add up a bill or recognise a coin in his wallet. Then it took his encyclopaedic memory of music until he could no longer play a note or sing a tune.

The end came as quickly for him as it came cruelly for us, two years after diagnosis and a day after he took a rare walk around the fountain at his nursing home.

And I hear each week of another friend whose father has been diagnosed with Alzheimer’s, or a mum whose intellectual decay is awaiting a name.

What is the price of longevity? And how will we pay it?

The latest census tells us there are more than three million people aged 65 years and over in Australia, and the statistics tell us almost 10 per cent of them have some form of dementia. That is projected to rise to 30 per cent by 2050.

You can’t survive it and it’s not a normal part of ageing but this slow massacre of our elderly will continue unabated until some branch of the sciences finds a way to stop it. And more importantly, reverse it.

We also have to think long and hard about dignity. Dementia can take years and years to tighten its vice-like grip on the mind.

Those who are new to the symptoms of its rude interruption to life will see their family members and friends slip quietly into the personalities of someone else. People we don’t know and don’t recognise.

It’s as disconcerting as it is distressing. I don’t ever want my mum to become somebody else. She is the bedrock from where I began, and I don’t want that ground to shift because some merciless disease has changed on a whim the essence of who she is.

What are we to do? And how are we to manage? A generation of us is faced with the freedom of our empty nests being thwarted by the need to care for ageing relatives.

Do I worry about it? Of course. I cannot bear the thought of my mother’s decline. As a once single mum and her only child, we have an inseparable bond.

She says she wants me to knock her on the head if she starts losing her marbles.

But it will be my great duty to care for her as she cared for me. Even though there will be days when I will hate it. And maybe hate her for it.

But I will try to push through the gloom of losing her one day by holding tight to the memories I have stored away for retrieval when the time comes.

I don’t even know what’s there. But I know there is a vault of them buried somewhere in the intricate folds of my mind.

As long as I can keep it.