Aussie Carer: We’re fighting for a better deal

When the love of her life was diagnosed with a rare condition, Kathryn didn’t hesitate care for him

  • When Kathryn met Craig at a singles club in June 2004, sparks flew between them. Craig soon became her ‘sunshine man’, bring her so much happiness.
  • So when he was diagnosed with a rare condition chronic pain condition, trigeminal neuralgia, she didn’t hesitate to being his carer.
  • But devoting so much of her time and energy to being a full-time carer has cost Kathryn a lot financially, including her super.

    Here Kathryn shares her story in her own words

My partner Craig bounded up the backyard with a frangipani flower in his hand.

‘For you, my love,’ he said one warm summer’s morning.

‘Thank you, my Sunshine Man,’ I smiled.

Sunshine Man is what I always called Craig, my ray of happiness.

Both divorced, with grown-up kids from previous relationships, we’d met at a singles club dinner a few months before in December 2003 and sparks flew.

Craig was kind, gentle, loved nature and was always on the go.

‘We’ll deal with it together.’

But in June 2004, we were out for a walk one afternoon when his legs buckled, and he crumpled to the ground. Thankfully, he was unharmed.

‘Must’ve misplaced my footing,’ he said.

It was unlike him to be clumsy, but it wasn’t a one-off.

‘I don’t know what’s going on,’ he stammered, after another tumble.

He’d started to get headaches too.

Picture of couple prior to devastating diagnosis
Us before the diagnosis (Credit: Supplied)

At our local GP, the doctor checked him over.

‘I think you have trigeminal neuralgia,’ he said, referring Craig to the local hospital to see a neurologist.

Trigeminal neuralgia (TN), or suicide disease as it’s commonly known due the physical and mental anguish it causes, is a neuropathic chronic disorder triggering unpredictable intense bouts of pain that make everyday life unbearable.

The torture described by sufferers is a shock-like or stabbing pain to the face and neck.

‘I don’t know what I’d do without you.’

In between attacks the body endures relentless burning, throbbing, numbness, tingling, or dull aching sensations.

‘We’ll deal with it together,’ I promised when our worst fears were confirmed.

Craig tried to remain positive despite the grim prognosis.

There was no cure for TN, medication could ease symptoms but in most cases all sufferers had to look forward to was a life of pain.

Back home, Craig tried to carry on as normal but as the weeks turned into months, his condition wreaked havoc on his body.

Photo of couple of holiday at the beach
Craig and me in 2004 (Credit: Supplied)

Pain attacks were triggered by the slightest vibration or contact with his face. Soon, things like shaving, washing his face, brushing his teeth, blowing his nose, eating, drinking or even talking left Craig writhing in agony.

‘I feel like my whole body’s on fire,’ he winced, as a gentle breeze brushed his cheeks when I opened the window for some air.

It broke my heart that fate had dealt my Sunshine Man such a cruel hand.

‘I can’t even water the flowers anymore,’ he uttered, staring through the window.

As he was unable to care for himself, in 2005 I quit my job in a cooked chook shop, moved in with Craig and stepped up to be his carer.

‘I can’t even water the flowers anymore.’

Every day I did my best to keep him comfortable, making sure he took his meds, driving him to medical appointments, preparing his meals, and washing and dressing him.

Sadly, Craig’s attacks got worse over time, with longer and more frequent episodes.

Being on a cocktail of tablets every day didn’t help, and even surgery to rewire the nerves was ineffective.

Despite all Craig was going through, he was forever thanking me for my help and saying how lucky he was to have me.

‘I don’t know what I’d do without you,’ he said.

Photo of man and dog standing in the garden
Craig loved gardening (Credit: Supplied)

Craig was the love of my life.

I wouldn’t have it any other way but, with family dotted all over Australia, it was just the two of us and looking after him was taking its toll.

I found TN support groups which brought comfort.

And I threw myself into a role working as a carer and advocate for Carers SA to stay busy, as well as juggling caring for Craig.

Now, after nearly two decades as a carer, every morning is like Groundhog Day in our house.

Craig is only 67, and as soon as my alarm beeps, I get out of bed and busy myself looking after him.

Needing round the clock care, these days he spends most of the time in bed, only surfacing at night – when the world’s quieter and there’s less stimuli to trigger a pain episode.

Even a simple task like taking a shower is a problem as when the water droplets fall, to Craig they feel like needles piercing his skin.

Recently he’s started eating only soft foods such as soup and pasta because chewing is too painful.

I’m devoted to my partner but I’m reaching my wit’s end in some ways.

Photo of man and woman/carer in their living room
Me with Craig – my sunshine man

Providing for us is financially draining and I constantly have to budget to make ends.

Eating away at my superannuation, I’m petrified there will be none left in a few years. Carers don’t get super while they are carers.

I receive a carers payment of roughly $840 a fortnight and a supplementary carer allowance of about $150 a fortnight.

Meanwhile the national minimum wage in Australia is $882 per week.

The struggle is immense. I try my best to make sure Craig is unaware of my money woes – it’s not his fault.

I’ll be there to care for Craig until I draw my last breath.

But us carers need a bit of care and support, too.

Carers all have one thing in common… we do what we do out of love for our partners and families.

If only the government would dig deep to help us provide for and support our loved ones, and pay super too so caring doesn’t cost us our future.

That’s why I support the Cost of Caring campaign.

And I’ll do anything I can for my Sunshine Man.

Photo of woman/carer sitting in lounge chair and smiling
Me recently

Join the fight for carers

Every day, carers around Australia put all or part of their lives and ambitions aside to care for others.

Seven in 10 of these carers are women and becoming a carer increases their financial vulnerability as they sacrifice income, future income potential and superannuation, to look after someone they love.

We’re calling on the government to guarantee superannuation payments for carers.

Help us by signing the petition.

Related stories