'I don't have a life': The physical and emotional toll of caregiving for a loved one

A 70-year-old woman caring for her mentally disabled husband all by herself says she doesn't have a life anymore and no longer feels like an individual.

Now, researchers at Massey University hope to measure the physical and emotional toll on caregivers looking after their loved ones.

Wendy Slieker's husband was found dead on the side of the road in Wellington's Oriental Bay.

It took almost 30 minutes for paramedics to restart his heart, and by the time he woke up he had suffered a severe brain injury from the lack of oxygen.

Fourteen years later, Slieker said he was like a child in a man's body.

"He's very much like a six-foot-three toddler," she said.

"Everything that is required to be done in a day he needs assistance with. He will not shower, he will not bathe, he will not do any of the basic functions that an individual does like brush his teeth."

Simultaneously dealing with her own spinal injury and an autoimmune condition, she had to put her husband's needs before her own.

"He's in a highly depressive mood most of the time because he realises what he's lost. He was an engineer before, he's lost all his friends, he's lost all of his ability," Slieker explained.

"So a lot of my role, I mean basically I'm a doctor, I'm a psychologist, I'm a physiotherapist, I'm all of the professions that he needs."

Slieker said she had exhausted all other options for professional care.

"He won't allow other people in the house that he doesn't know," she said.

"I [could] take him up to an organisation called St John of God in Karori for respite care to give myself a 10-day break, [but] he won't go. I can't force him."

Stories like hers had inspired Massey University psychology lecturer Dr Shanika Koreshi to research carer wellbeing.

"From a research point of view, we don't really know enough about how caregiving affects people's lives, their relationships, well-being, employment and the ability to participate in society over the long term," Koreshi said.

"Statistics can tell us what is happening, but they can't really tell us what it feels like."

More than anything else, Wendy Slieker said it felt lonely.

"I had a life. I don't have a life now," she said.

"I'm lonely. I'm extremely lonely. I don't have the social contact that I once had. Your friends move on, they've got their own lives. They're not there for you."

Carers NZ chief executive Laurie Hilsgen said a recent wellbeing survey showed that was a common feeling.

"Almost 80 percent of those carers say they feel lonely or isolated," Hilsgen said.

"Caring can mean that you spend more time at home, less opportunity maybe to participate in activities, hobbies, to maintain friendships and other relationships."

Dr Koreshi's study invited carers to submit anonymous stories they wouldn't normally share out loud.

She said the physical and emotional toll was enormous.

"There's the physical side of it first. Many informal carers are providing around 30 hours of care each week," she explained.

"But what really stands out to me would be the emotional pressures.

"I mean, one participant told us that it's actually easier caring for sick people at work than caring for her own disabled son at home because at work her shift ends."

In the years since the accident, Wendy Slieker said she had found activities her husband could engage with to regain some autonomy.

"I taught him how to use his computer, [and] I've taught him how to use a pod coffee machine. You wouldn't think that a little pod coffee machine could be so valuable, but for him it gives him a little bit of independence," she said.

"Or the other thing that he does is he obsessively does Sudoku that I print out for him online."

But despite the occasional "lovely moment", she said she wouldn't wish her position on anybody.

"This is a lifelong role. I am never ever going to get out of it," she said.

"I am never going to retire because as long as I'm alive and as long as he's alive, I have a caregiving role to fulfil."

Dr Koreshi said her goal was to inform nationwide change.

"We are hoping that we could build an evidence base that directly informs how we support caregivers," she said.

"Beyond that, we are also hoping to put the data or the stories that we get from this into developing a caregiving wellbeing measure which can track how caregiving shapes people's life over time."

Shanika Koreshi hoped her research would build towards a larger programme to change how caregiving was measured and supported in New Zealand.

Sign up for Ngā Pitopito Kōrero, a daily newsletter curated by our editors and delivered straight to your inbox every weekday.