Impact of caring on work and finances

This Talking Point is about carers’ experiences of the impact of caring for a person diagnosed with severe mental health problems on carers’ work lives and finances, and how this affected carers’ plans for the future.

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Working and caring
Lifestyle and life plans
Government and other assistance
Ongoing financial support for person being cared for
Supporting the financial independence of people being cared for


Working and caring

Many carers we interviewed said juggling working and caring for the person cared for could be challenging. A few carers, like Rowan, said they had felt anxious about going to work and leaving the person being cared for alone at home. For Rowan, it became untenable to maintain a job alongside the responsibilities of being a carer. Saskia, an artist, said a full-time job would not have left her the ‘headspace’ that she felt she needed to ‘be there’ for her sister. For that reason Saskia said she worked mainly part-time jobs, which made it possible to balance her creative work, paid work and caring responsibilities more easily.

A few carers gave up or lost their jobs or felt obliged to leave because of negative performance reviews, which one carer, Mike, attributed in part to a lack of understanding on the part of his employer about his caring situation. When Laura’s husband became ‘unwell’, she said she had to give up her fulltime contract work in a government department to care for him: ‘when I was working and caring I did find it extremely difficult because of the symptoms of the illness’. Laura said she wanted to return to work: ‘I don’t function without working to my full capacity. I need work … to have a [sense of] purpose’. Mike described giving up full-time work as ‘distressing’, however, both he and Rowan subsequently found that it was, in Rowan’s words, the ‘best thing that could have happened’ for him and his wife.

Rowan’s work performance and physical and mental health were impacted by his caring responsibility. Once he and his employer agreed he should leave work, Rowan felt it was ‘the best thing’ for him and his wife.

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Lifestyle and life plans

Some carers talked about their life and retirement plans being impacted by caring for the person cared for. A few carers who were married to or partnered with the person cared for said they felt they could rarely do ‘things that couples do’, as Mike put it. Holidays became difficult for some due to finances and caring responsibilities. A few carers commented that it was not always possible to take the person cared for on holiday, or to leave him or her at home alone.

Many carers were concerned for the future. Some worried about how they would keep their house, cope financially in retirement and how the person cared for would get by if they died. Several carers continued working for longer than they had intended because of financial issues involved in caring for the person cared for.

Rosemary was worried about how they would manage as she grew older and approached retirement, which she had put off for a number of years.

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Government and other assistance

Finding what was available could be challenging because what Lisa termed, ‘the whole system’, could be difficult to navigate. It was not possible for most people to survive solely on the Disability Support Pension and/or the Carers’ Payment (for information about the Carer Allowance and Supplement, visit our Resources and Information page). Many could not afford services that were not subsidised by the government. A few carers relied at times on extended family members for financial help, accommodation or food.

For a few carers, applying for financial assistance from the government, employers or insurance agencies could sometimes mean that the person cared for’s doctors needed to sign paperwork to verify carers’ applications. However, their treating doctors were not always available which, for two carers and their families, meant lengthy delays before they could receive payment.

Christene needed evidence from her husband’s treating doctor so he could receive employee sickness benefits. When her husband’s psychiatrist was not available, the process of finding someone else to fill in the form was difficult.

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Some carers described community services as limited in what they could approve for financial assistance. Many carers commented that this could make it difficult to best meet the needs of the person cared for.

Ballagh’s son needed household items, which the only service they accessed could not fund.

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Ongoing financial support for person being cared for

Some carers said they often supported the person cared for with cash, paying bills or fines, and making purchases for them (see also Supporting quality of life). A couple of carers commented that emergencies could mean certain unforeseen expenses, like respite care.

Iris said she often needed to take her son out to get him out of the house and she also paid his driving fines.

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Supporting the financial independence of people being cared for

Some carers, like Kate and Sasha, talked about different ways in which the person being cared for had been supported to develop their ability to manage their own finances. Kate described how she had supported her brother to exercise control over his finances by giving him financial advice (see also Supporting quality of life). A few carers said that mental health practitioners had supported the person cared for to manage their own financial affairs. In a couple of instances, carers said they felt this had made the person cared for vulnerable to exploitation and at risk of his or her needs not being met. A few carers described how they were helping the person cared for to consider there were consequences to spending money by communicating their expectations about being paid back money owed, and discussing this with the person cared for each time they gave him or her financial assistance.

When the Disability Support Pension was paid to her son’s bank account instead of to Alexia’s, he began purchasing expensive items and went into debt.

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Dianne and her husband aimed to promote their son’s independence by lending him money, on the condition he first listened to their advice about how to spend it.

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