Caring for an ill spouse: When love gets buried in guilt and stress

When you vow to remain with your partner “in sickness and in health”, it’s fair to say many people never envisage their future including the full-time care of a chronically or terminally ill spouse.

Suddenly, your comfortable life – whether it includes a passionate and intimate relationship, or more of a friendship – is thrown into doubt, and you’re forced to accept a new one, often with little warning at all. Caring for a sick spouse, whether they’re suffering a mental or physical illness, can have a huge impact on the partner, who may have to give up on their dreams of a long life together, and instead adapt to a more uncertain future.

If you’re the carer-partner, you may feel guilt over still wanting time alone or space to have fun with friends. Perhaps you’re feeling lonely? Or you’re grieving the loss of a life you loved and your partner’s former health? Whatever emotions you’re struggling with, it can be a hugely challenging time.

Elisabeth Shaw, the CEO of Relationships Australia NSW, told Starts at 60 that it’s important to seek help when caring for a partner, as handling the stress alone can often have an irreversible impact on your relationship. “Carers are often very invisible in our society… The reality is a lot of carers are suffering at home,” she said.

Read more: How not to feel isolated while being a full-time carer

Sharing her story on Cancer Research UK’s online chatroom, one internet user revealed her struggles while caring for her terminally ill husband, writing: “There were so many emotions on a daily basis, desperation, fear, anguish and great sadness.” Acknowledging that she was “lucky” to have support from family, the woman said she couldn’t have managed without it, and urging others to seek help too.

Another user revealed her husband had been diagnosed with Stage 4 kidney cancer. “He was a hard working strong full of life man and the hardest part is watching his body fail whilst his mind is still active,” she wrote. “The most distressing part for me is I keep thinking about his funeral, and how lonely I will be when he’s gone.”

While contemplating the loss of a deeply loved partner is heartbreaking, many people find themselves in an equally difficult situation – caring for a person that they perhaps no longer love or with whom they have a fraught relationship. 

If a couple has already begun to drift apart, one of them may suddenly be thrust into the position of primary carer, when “the style of relationship you had, or the issues you were facing, don’t allow for you to feel that intimate or engaged, or even that desiring of a caring role,” Shaw told Starts at 60.

She pointed out it was common for family members and doctors to assume a partner would step in as primary carer, but that’s not always the case – and ensuring that another person is available to take on the caring role can be difficult for the couple as well as their families.

Read more: The Aussie grandparents reliving parenthood as kinship carers

Meanwhile, if the caring role requires helping a spouse to shower or go to the toilet, that can pose a major challenge, Shaw said. “Suddenly there’s a level of intimacy between you that you may feel surprisingly challenged by,” she said. “Equally, if your sex life was important to you, suddenly wiping your partner’s bottom can be difficult.”

She advises accessing professional help to cover personal care, to “preserve something of your couple relationship”.

Of course, it’s not always as simple as that. Often the person diagnosed might not want a stranger taking care of them – making their partner feel guilty for not helping out. In that situation, Shaw advises: “The partner ends up thinking ‘is it mean to refuse?’ I think the only way you can refuse is to say ‘it’s because I want us to remain close as a couple, to preserve something of our independent couple relationship’.”

Former law professor Toni Bernhard was forced to quit her job around retirement age to battle illness. Writing for Psychology Today, she said there were some key ways carers could help themselves.

They include not hiding the fact you’re a carer from others, not pretending your life is the same as it was, not attempting to do too much, not neglecting your own health, and not becoming isolated “even if the person you’re caring for is house-bound.”

Visit Starts at 60’s Carers Club to meet other carers sharing their stories and offering advice to each other here.

To get expert advice or to speak to a professional, Relationships Australia offers a stream of services. Just visit their website here, or call 1300 364 277. Alternatively, Carers Australia is the national peak body representing Australia’s carers, and to seek more information visit the website here or call 1800 242 636.

For more information on government services available, visit the official carers section here.

Do you or have you cared for an ill partner? How have you dealt with it?