Carers’ experiences of caring for themselves

Victoria’s Mental Health Act 2014 recognises the role of carers in the ‘assessment, treatment and recovery of person who have mental illness’ (section 10(h)). One of the main objectives of the act is to enable and support persons diagnosed with mental illness ‘to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)). Many carers interviewed were of the opinion that learning to care for themselves was a key stepping stone for maintaining their capacity to care for their loved ones. This Talking Point is about carers’ views on what ‘caring for yourself’ (‘self-care’) entails, and their understanding of how self-care can support the quality of life of carers and the people they care for.

Most carers talked about the connection between their role as a caregiver and their life as a whole. People talked about self-care in different ways, including in terms of having, as George put it, ‘something for yourself in life’ and having, in Elena’s words, a ‘balanced life’. Most carers talked about the importance of self-care to enable them to continue to support the person cared for, and for fostering carers’ own identity and sense of self. (See also Impact of caring on relationship with person cared for.)

Quick Links

The place of caregiving in the life of carers
Strategies and outlets for self-care
Tapping into beliefs and personal strengths

When Elena’s son’s was diagnosed with ‘mental illness’ this introduced many ‘changes’ into the emotional dynamics of Elena’s family. Over time Elena said she ‘incorporated’ these changes into her life.

The place of caregiving in the life of carers

Many carers, such as George, described feeling like their life had at times ‘revolved’ around caregiving. Others talked about how they had integrated caregiving into their life. Some said they put the person they cared for first. For example, Mike said he considered himself ‘the low priority’ and that he put caring for his wife diagnosed with severe ‘mental illness’ and young children above his own needs. Others, such as Jeannie and Elena, had put the person cared for first in the past and described how their lives had centred on caregiving as a result. Both said they had later made a conscious decision to, as Jeannie put it, ‘put themselves first’ in their own lives. Sue said her life was ‘based around caring’ for her son. However, she planned in the future to ‘ease’ out of his life and ‘back into her own life’ when he became more able to care for himself.

Saskia said she worried ‘the whole time’ about her sister. This left her little ‘space’ to reflect on the impact of caring on her life.

Jeannie described how she ‘woke up’ to the need to prioritise self-care over caring for her son after her physical health broke down.

Many carers described how caring for another person had led them to focus on that person to the extent they took little time to reflect on how their caring for others had an impact on their own lives. For Elena, a carer consultant, the lack of attention to carers’ own needs was an example of carers not caring for themselves. She said: ‘You ask a carer how they are, and they tell you how the person they care for is’. Julie said she had made a conscious effort not to be ‘totally focused’ on her daughter’s mental health problems; she continued doing activities she had done before her daughter became unwell.

Ebony felt ‘overwhelmed’ when she first found out about her brother’s diagnosis. She said it was important not to be ‘consumed’ by someone else’s life.

Since Mike became the primary carer for his wife, he said he found it ‘hard’ to relax. After he had a near heart-attack, he learned to take better care of his own health.

Strategies and outlets for self-care

Many carers described strategies and outlets that assisted them to set a limit on time they spent focussed on the person they supported. Ballagh found it helpful to write about her experiences of caring for her son in a journal. She said once she ‘put down on paper’ any worries with which she was preoccupied, she was less concerned about them. Elena described how ‘mindfulness’ practices helped her shift focus from being overly preoccupied with thoughts about her son, to ‘living for now’.

Jeannie allocated a time each day to reflect on caring for her son. For the rest of the time, she said she tried to put it out of her mind.

Most people described an activity they routinely engaged in which provided, as Mike described, an ‘outlet’ from caregiving. For some this was important for maintaining their own sense of self beyond their caring role. Rich said he made time to pursue ‘things that are important to me as an individual’. For many, self-care took the form of a hobby, interest or sport. Mike played cricket and went on fishing trips; Elena played squash and Bev spent time gardening. For others, such as James, Rich and Tracey, their ‘outlet’ was going to work, while Ballagh’s was her studies.

George identified ‘having something for yourself’ as vital for carers.

Christene described her daily morning routine, which she said prepared her for whatever ‘life’ had to ‘throw’ at her that day.

Another aspect of setting limits on caregiving which a few carers talked about was learning to say ‘no’, to the person cared for. For example, Jeannie told her son he could not live with her anymore after she started to feel her preoccupation with his wellbeing was ‘taking over her life’. She said she felt she needed to put some ‘distance’ between them in order to ‘actively look after’ herself.

Elena sometimes said ‘no’, when her son asked her to spend more time with him. She said this ensured she did not resent caring for him.

Tapping into beliefs and personal strengths

Carers differed in their explanations of the purpose of self-care. Many said they thought they needed to care for themselves in order to continue caring for their loved ones because otherwise no one else would look after their loved ones. Some carers described self-care as important for maintaining their own identity or sense of self and wellbeing. Alexia said challenges she faced when she became a carer for her son provided the catalyst for her search to ‘find’ herself.

Tracey reflected that caregiving could ‘easily’ become a ‘vehicle’ for carers to lose their sense of ‘who they are’. She felt it was important to care for her own well-being as well as for her partner’s.

Many carers described resources which helped them maintain and develop their sense of self. For some, such as Rich, Ebony, and Alexia, religious faith or spirituality was a source of inspiration. Alexia also found personal fulfilment in her volunteer work as a carer consultant. Saskia said she tried to ‘inspire’ herself though pursuing her ‘passion’ for making art. Rowan emphasised the value of ‘laughter’ for carers’ sense of wellbeing.

Elena said she enjoyed contemplating nature, which gave her a feeling of ‘light-heartedness’.

Rowan said it was important for carers to look after themselves by having their own goals. He believed his passion for working on his recipe website contributed to support his wife’s personal recovery journey.