What happens to your marriage when your husband becomes your carer

Imagine the text-message stream of a newly dating couple. Now, mentally compare that with the equivalent exchanges between those two people 10 years later. Without context, you’d likely wonder if these contrasting pairs were even doing the same thing any more.

One third of primary carers do more than 40 hours a week of unpaid care work. Credit: ISTOCK

Loving partnerships evolve with the introduction of new pressures and the passage of time. However, the impact of disability and illness has the potential to turn any relationship – romantic or otherwise – completely inside out and upside down.

Had you picked up my phone last Tuesday, the text conversation with my husband of eight years looked like a shopping list. At least, a shopping list for an imaginary grocery store of seemingly unrelated medical ailments.

“Something isn’t right. I’m worried now,” was my first text.

“Dizzy?” came the reply.

“No, but aching muscles. Exhausted without cause.”

“Hmm. Upset stomach, too?”

Romantic, eh?

Five years ago, the relationship with my husband shifted, dramatically. At age 31, I was diagnosed with a brain tumour, which despite being removed via surgery, multiple times, just kept growing back. I now live with multiple and complex disabilities. Without the same brain function, my body does not behave like everybody else’s any more.

And while I have great support from doctors, nurses, rehab staff, colleagues, family and friends, there is one person whose contribution stands alone. My husband, you see, is no longer “just” my husband. He is also my carer.

According to Carers Australia, there are around 860,000 unpaid primary carers in this country. They provide daily support, mostly informally, to family and friends. Care looks different in every relationship but ranges from medication management to help with getting dressed or showering, providing transport, cooking meals, dealing with emergencies and emotional support.

One third of primary carers do more than 40 hours a week of unpaid care work. That’s more than a quarter of a million Australians for whom unpaid caring is literally a full-time job. They form an essential support network, enabling many people with complex needs to remain independent, and in their homes and communities for longer.

Without their contribution, our country’s aged care, disability care and hospital system would be under even more pressure than it already is. And the cost to government? Eye-watering. Carers may save the taxpayer, but this comes at a personal financial cost. Many carers reduce their working hours or even leave their jobs to meet the needs of the person they care for. This limits their career prospects, creates financial instability and can lead to poverty.

One third of primary carers do more than 40 hours a week of unpaid care work. That’s literally a full-time job.

While this isn’t the scale of ongoing support I require, I have no doubt my husband would provide that if I did.

So would countless other carers whose unspoken responsibility is to be or do whatever is needed by the people who depend on them. However, their contribution is so rarely recognised, particularly when caring is informal, erratic and unquantifiable.

Frustrated after my recent temporary symptoms, I apologised to my husband. His help is offered generously but I still carry guilt about the impact my body has on his life. Words like “burden” have framed disability discourse for centuries. Extracting yourself from this internalised ableism is hard.

On that particular evening, my carer/partner in text-message diagnoses was circumspect: “Anyone with disability or chronic illness needs someone to look out for them. Sometimes that requires physical support but mostly it’s more emotional or intuitive. The public narrative of being a 24-hour carer for someone who cannot physically look after themselves ignores hundreds of thousands of people with less-visible disabilities. People who, nonetheless, would and do benefit from care.”

All right, I tidied up his original text message but he really is very wise.

The point is this: carers know illness and disability don’t discriminate. The term “not yet disabled” is increasingly common, reinforcing that disability is a continuum, not a static condition. It can happen to anyone, will happen to many of us – and it changes over time.

My relationship with my husband has changed with time, too, just as our text messages have. But at its core, there remains deep respect and abiding love. A love that says, “I’m here for whatever comes.” Unpaid carers provide a huge contribution to the person they care for. Recognising this should be a question of social justice for our whole community.

Caring is costly. So, who is caring for the carers?

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