Supporting quality of life of person cared for

This Talking Point is about carers’ views on what needed to be in place to support the quality of life of the person being cared for, and about carers’ experiences of when and how they were able or unable to put in place building blocks that supported the quality of life of the person cared for (see Advice for other carers on this website, and Family and Friends, Experiences of Work, Finances and Housing, and Personal Recovery on our companion website on the experiences of people with severe mental health problems).

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Home care and respite care
Work and study
Finances
Accommodation


Elena described how without family input, the ‘quality of life’ of people with ‘mental illness’ goes ‘right down’.

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Most of the family carers interviewed said they had put in place building blocks that had supported the person being cared for who had been diagnosed with ‘mental illness’ to have, in Elena’s words, ‘quality of life’ rather than ‘substandard’ living. These building blocks included helping the person cared for with organising domestic tasks, assisting them to apply for or remain in work (paid and voluntary) or study, providing financial guidance and support, and arranging accommodation. Many carers said these factors provided the material conditions necessary for the person cared for to develop, in Kate’s words, ‘self-esteem and confidence’, and a sense of what James described as ‘self-worth’ for a better quality of life and greater independence. These issues are explored in the following sections.

Home care and respite care

Most of the family carers interviewed described how they had supported the person being cared for at home by helping out with cooking, washing, ironing, tidying, paying bills, going shopping and on outings with them. How carers approached home care varied depending on whether carers lived with their family member or not. Bronwyn said she had adopted the attitude that she and her son who was in his mid-twenties were ‘just sharing a house’ and he did his own washing, paid bills and made appointments for himself. By contrast, some carers like George, Bev, and Elena, whose adult sons lived independently, said they regularly took around meals, and organised cleaning and other domestic tasks. Bev said this meant her son had a ‘good lifestyle’ that he probably would not have been able to have otherwise.

Bev organised four care support workers to provide home care for her son who lived in his own flat.

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Rowan was frustrated by a lack of short-term or flexible respite care for occasions such as needing to attend his own appointments.

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Work and study

Many of the loved ones of carers interviewed were working – some full-time and many part-time – or were looking for work in paid or voluntary jobs. Most of the family carers spoke about the importance of having a job for giving the person cared for, as Laura put it, a sense of ‘life purpose’ which enhanced his or her quality of life. A few, including Ballagh whose son lived with her, said carers’ quality of life would also improve if the person cared for was able to work: ‘It would be nice if he was out of the house and working for a couple of days a week. It’d be good for him, it’d be good for me’.

Laura described how, when her husband lost his job and became ‘unwell’, she left work to care for him which led to them both missing their sense of ‘life purpose’.

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For a few family carers, the level of support provided by the person cared for’s employer made a key difference. Katherine’s son worked full-time ‘between episodes’ and she described how when he became ‘unwell’ he either took the initiative to ‘withdraw’ from work, or she supported him to ‘take time off’: ‘They’ve always allowed him as much time off as he wants. They ring me during the course of the hospitalisation and ask how he’s going. They have been unbelievably understanding’. By contrast, Laura said she thought it ‘highly possible’ her husband had lost his job of 17 years due to what she described as the new owners’ unsupportive stance towards ’employing people with mental health conditions’.

Many, like Iris, Sasha and Ballagh, experienced difficulties supporting the person being cared for to find work due to what they described as lack of support in the mental health system. Sasha said her son had always had to ‘source’ support for job seeking for himself, while Iris said her son lacked motivation to access employment agencies and needed a support worker to come to him.

Elizabeth contrasted the difference between her son’s experiences studying and working. University was ‘manageable’ and support was available ‘if he needed it’, whereas work was more ‘stressful’ and his employer was not ‘very supportive’.

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Ballagh said the ineffectiveness of the job agencies her son consulted made it difficult for her to help her son find employment.

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Finances

Some carers said supporting their family members to budget and manage their finances helped promote the independence of the person being cared for. Many carers’ loved ones who were not in paid employment received the Disability Support Pension, and while some had their pension managed by State Trustees, many carers’ family members had managed their own finances for many years. Some carers said they supplemented the person cared for’s pension from time to time. A few, like Sue and Rowan, had direct responsibility for managing the person cared for’s pension. Others, like Ballagh, said management of finances could be a challenging issue, stating that her son would ‘say that I … deliberately won’t let him have money which is why I handed it over to the state trustees in the beginning’. (For the views of people diagnosed with severe mental health problems on managing their finances, see Finances and Housing on our companion website on the experiences of people diagnosed with ‘mental illness’.)

Kate said her brother did not want to ‘talk about’ what he was going through with her, so instead she supported him by giving him advice on how to manage his money and learn to live ‘on his own’.

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For Ballagh, her son’s quality of life depended on him having ‘somewhere to live’ and work. While she had provided money in her will for a flat for him, she did not think any employer would ‘give him a try’.

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Accommodation

About half of the family carers we interviewed lived with the person they supported (including six carers who were married to or partnered with the person being cared for, and eight parent carers). Other carers’ loved ones lived independently, either on their own or in shared accommodation. Bronwyn, Iris and Rosemary described how they were supporting their sons to be more self-sufficient. Bronwyn said: ‘the goal is for him to save up so … he can become independent, live independently of me’.

Iris thought it was important for older carers who cared for their adult children to support them to live independently ‘early rather than later’. But the ‘proper accommodation’ needed to be available for that to be possible, she said.

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Five of the family carers whose loved ones lived independently had bought or planned to buy a house or flat for the person being cared for. Other carers described how they had supported their family members by helping them find affordable rental accommodation or apply for public housing or support accommodation.

Some carers commented on the lack of accommodation for people diagnosed with ‘mental illness’ that followed the closure of psychiatric hospitals in Victoria; James said he did not recommend restoring them but that he did ‘not believe there was enough accommodation and support facilities put in place’. Elena commented on the perceived lack of will in the community to support people diagnosed with ‘mental illness’ to have a better quality of life by putting funding towards providing housing in which they could live: “we don’t as a society consider the housing for people with a mental illness or a disability or a low income … I guess the popular choice of people is to put the funding in other [things] and that’s the only way things are going to change, is if the community wants to change”.

Bev said people diagnosed with ‘mental illness’ who cannot be cared for at home or live independently, are ‘vulnerable’. They need somewhere to live with ‘dignity’ when their carers pass away.

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Iris reflected that her son had ‘very low self-confidence’ due to his social isolation. She thought a ‘lifestyle village’ for younger people diagnosed with ‘mental illness’ could support his ‘independence’ and quality of life.

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