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.
Quick Links
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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But like I said, in retrospect, I should have finished work sooner because the time that was being devoted successfully to my wife would have been better staying that way. And in the end, they asked me at work, I had all sorts of tests done you know, psych tests and everything and work said, you know, their duty of care, they felt that it was probably better that I wasn’t at work and I agreed. Was it hard by then?
No, because I’d already had so much time off and had seen the improvement in my wife that I was sort of, ‘I’m glad you did it, not me’, because I didn’t want to say, “I need to finish work”, sort of thing. It’s almost like a defeatist sort of thing, but became a fait accompli. They said, “You know, we’re going to put you off”. “Okay”. I’m out the door. See you later. [Laughs]
I couldn’t wait to get home and say, “Yep, I’m home now. Thank god for that, I’m going to be able to -“. I’d already done some research on my Centrelink options if they put me off completely, because I had advance warning of it and I knew that my options at Centrelink were going to be fine, as long as my wife met the criteria. And I spoke with the psychiatrist and counsellor for her and said, you know, “From what you know about it and all the rest” and they said, “Oh, she meets the criteria, tenfold”, sort of thing. “Yeah. No, definitely, she would meet that criteria”, and so I felt comfortable knowing that moving forward I could devote more time to her.
And the moment that I came home and said, “They’ve finally put me off work”, she actually understood the import of that and said to me, you know, “How do you feel about that?” And she realised that that can be quite a significant event in anybody’s life. And I said, “I’m absolutely wrapped in it, because now I can spend all my time looking after you”, and I meant it. Funnily enough, I meant it.
I missed and I still do miss parts of being in full-time employment, you know, like I said. But that’s more a selfishness, of getting away from the home caring elements and that. But it was the best thing for my wife’s moving forward, sort of thing. It was the best thing for her and it also turned out to be the best thing for my mental health, as well. Because now, instead of trying to half-pie, juggle two things, I could fully concentrate on the one thing, which was my wife’s health and in between time, do those little things for myself. So yeah, the transition, it wasn’t hard because it seemed it at the time even, to some degree [to be the] best thing that ever happened.
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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It’s more lonely now for me, because I’m getting older. We need help, and I don’t know where that help’s going to come from. I’m in a situation where I can’t buy a house, I don’t have a house. I’m getting – I’m way past retirement age. I’m still working because, how am I going to pay rent? I went to Centrelink and with his rent money and my rent money, we can pay rent, but we can’t eat, or we can’t pay electricity [laughs].
I’ve still got some super. Any housing, you know, people say, “Oh well, you’ll be on a waiting list [that] we’ve been on for 10 years, so, you know, good luck with that”. So I’m getting to the stage where, where do I turn now? What is there? And if I suddenly died or, you know, something happened to me, what would happen to him?
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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One psychiatrist was on holidays, the one [husband] saw once was on holidays. The other psychiatrist was due to come back from holidays, but he was sick. Their resident couldn’t fill in the paperwork, the resident doctor, because he didn’t know him. I suggested he read the psychiatrist’s notes. “They’re private”. Okay. “Take it to your…” I said, “The form says ‘medical attendant’. Have we got a psychiatric nurse?” “Oh, no, they can’t sign it”. There was nobody at this major hospital prepared to read the psychiatrist’s notes and sign this form.
This form was important so that we could have some money, so that my husband would be continued to be paid, so we could pay our mortgage and all the other associated things with living everyday life. They told me to take it to my GP. I took this form to my GP, explained the problem I had, and he said, “I really can’t fill it in, because I haven’t seen him for three weeks. Have they given you a diagnosis?” “No”. He signed it and asked me questions which I answered. He signed it.
I took it to my husband’s workplace. You guessed it. It got rejected by the insurance company because it wasn’t signed by the current treating medical practitioner. So we emailed the form back to the hospital. They lost it. It took two days to find. Then they found it and they took it to the psychiatrist. He said, “Anyone can fill this in”. They said, “No, it’s been returned because…” and they told him the story. Oh.
So he said, “Look, I will get it filled in the next couple of days”. It was then pointed out that, you know, we need income. “Would you like to supplement their income this week? Because if you don’t fill this in today and get it away up to his workplace, there won’t be any money for this family to live on”. So he filled in the form. It’s just a joke.
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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Honestly, we just have to fight for everything you get, sometimes you just get so tired of fighting. They have this sign at the community health centre. “Are you having financial difficulties? Can we help you?” Now, we’ve got one wage supporting three people. [Son] might be living on the pension, but you know, we’re providing electricity, water, food, you know, the works. And I asked them whether [son] needed a new washing machine for his flat and I said, “You know, would you be prepared to help us?” And they said, “Oh, that’s not the sort of thing that we provide funding for”.
And I said, “Well what do you provide funding for? Because every time I ask you say, ‘no’, and yet you’ve got this big sign up there saying, ‘If you want financial assistance we’ve got a fund, ask us'”. So they said they couldn’t tell me. I said, “Why have the sign there?” So I ripped the sign down off the thing and chucked it in the bin and they came and retrieved it. But you know what I mean? They say, “We’re here for support”.
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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You’re continuously taking him out and feeding him and trying to find places to go to. He always wants to drive in the car somewhere but that’s when he seems to feel more comfortable just sitting in a restricted car. Even when you get somewhere two hours later he won’t get out [laughs].
Can he drive?
He can drive and he had a car that broke down and that was gone. Actually now he’s going to lose his license because he hasn’t got a doctor’s certificate but, yeah, he wants a car. But that’s again something he just says now, “I want a car, I need a car”. But I don’t think he’s really capable and he might just disappear. But yeah, the car at the time was always, you know, I paid all the registration, all the fines. And another thing is fines, fines, fines. He used to have so many fines and you just pay them because he won’t, and if you don’t pay them then he’ll just get in more trouble than he is already.
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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Because the money, since [eight years ago], the previous psychiatrist was telling the previous case manager to put my son with the state trustee to manage his pension. My son is on disability pension. Less money, less drugs. And at the time, my son didn’t have any debt because his pension used to come under my name and I used to manage his payment. I was not getting any money from him because if we did then we [would have had a] fight because he would say I’m stealing his money.
The case manager convinced my son to transfer the money, his pension, into his account instead of coming into my account. The pension would go to my son’s account. Then we’ll see if he’s going to have debt and how he’s going to manage his money. In December, he applied for a credit card loan from, I think, [bank]. And it’s been approved $5000.
He spent the money before he got the card because he only needed the number [of the loan account]. And he bought himself a desk, executive chair, a desktop [computer] and microphone speakers for his music, because he was doing music, rap music and so far he didn’t pay anything off from that. Then he bought in between a car, a $13,000 car. He didn’t do road worthy, he drove it, travelling and getting fines from the [Victorian toll road].
And then he [sold] the car but he got stacks of fines and three months ago he went and applied for a loan and he bought a motor bike – $11,500 loan. How? I don’t know. I took him to see a financial counsellor. The last four payments of his pension have been coming to my account where I give him all the money except the $250 every month to pay off the motor bike. But the rest of the debt hasn’t been dealt with.
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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Yeah, well usually we’d take it in turns and you know you’re going to give him money. So someone will do all the lecturing and say, “No you’re not getting it”, and giving the lecture and, “You’ve got to be good about your money, you’ve got to do this, you’ve got to do that”. And then the other one will give in and give him some. So you know you’re going to give him some anyway, but you’ve got to give him the lecture [laughs] and I think he knows he’s always going to get the lecture.
So he puts up with it, because he knows he’s going to get enough money to get his cigarettes anyway. So – but we do do ‘good cop, bad cop’, and take it in turns. Someone will be good and someone will be bad [laughs]. But you’ve got to keep enforcing that he’s not to waste his money, you know, and stop taking it all out in one go and, well, and wasting it.
