"IT'S tiring, it's exhausting, it's never-ending. It just got to the point that I was just thinking it would be so much easier if it was all over," Sandra* about the nearly 15 years she spent caring for her father at home.
Create a free account to read this article
or signup to continue reading
He had Alzheimer's disease, and in the time he lived with her she had only one night away from him.
Sandra is among the many carers who hide what they feel is an unspeakable secret: They have wished their loved one were no longer living.
The first study of this has found high levels of distress among carers, with some actively contemplating killing the very person to whom they are dedicating their life.
Alzheimer's Australia says not enough is being done for the 70 per cent of people with the condition who live in the community and their carers.
Study leader Siobhan O'Dwyer, from Griffith University's Menzies Health Institute Queensland, said carers were under incredible pressure and often had no one to speak to about their feelings.
"I think this really reflects how trapped people are in this role, how isolated they are and the lack of support for these roles," she said.
The study, published in the journal Aging and Mental Health, found almost a fifth of the carers interviewed had verbally or physically abused the person they were caring for, while the same proportion had wished their family member dead. Two of the group's 21 participants had actively thought about how they might kill their loved one.
"None of them had actually shared these experiences or thoughts before they talked to us," Dr O'Dwyer said.
"Most people tell us, particularly in the context of dementia, that once the person is diagnosed, other family members drop away, friends don't stay involved ...
"We need GPs and social workers and psychologists to be asking these questions and actually listening to the answers they are given."
While it was largely women in her study who reported thinking about the death of their loved one, the majority of murder-suicides among older people were committed by men.
"What we think that means is that women might report more thoughts, but men might be more likely to just go ahead and act," she said.
"If we wait for these men to tell us, it might be too late."
Carol Bennett, the chief executive of Alzheimer's Australia, said organisations such as hers were overwhelmed with requests for support, with 1.2 million Australians already caring for someone with dementia.
"We know there is going to be a shortage of 150,000 paid and unpaid carers by 2029," she said.
Sandra said she could understand why people might begin to think about killing the person for whom they were caring.
While for many years she had lots of good days, towards the end, when her father refused to eat, she began to feel like it would be better if he died.
"Even being a nurse, I didn't realise how hard it would be [on myself] for someone to just refuse to eat. He would just clamp his mouth shut and no amount of coaxing would work.
"It was pretty awful. I felt helpless."
* name changed
See our blogger Violet Grumble's take below on Alzheimer's disease and share your experiences via the comment link.
