Role of family in supporting caregiving

This Talking Point is about the support carers received from family members in caring for the person being cared for who had been diagnosed with a ‘mental illness’, and the share of responsibilities for caregiving between family members. (For carers’ perspectives on the impact of caring on relationships with family and the wider community, see Impact of caring on relationships with family and Caring and community).

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Dynamic of care in the family
Outside support

Most of the carers interviewed were providing support for one family member diagnosed with a ‘mental illness’, with a few, like Alex and Christene, supporting more than one family member diagnosed with a ‘mental illness’. Most carers we spoke to were parents caring for a son or daughter, and most of those parents were mothers.

Four of the carers were caring for a sibling, five were partners or spouses, and a few of these were ‘young carers’ in that they had become carers when they were under the age of 30. Lisa began supporting her mother in caring for her brother when she was 10, Tracey began caring for her same-sex partner when she was 22, and Ebony was about seven when she began supporting her father in providing care for her mother.

Lisa described how she became a carer for her brother when she was only 10 years old.

Dynamic of care in the family

While many people were the only carers for the person being cared for, some shared their caring responsibilities with other family members. People caring for their own child or a sibling especially mentioned how their spouses, former spouses or parents worked with them to provide support. While George was the main carer for his son, he described how he shared caregiving with his former wife who he said had been ‘very strong’ in her support by taking their son out on shopping trips, visiting him in his home (which George had bought and set up for him), doing his laundry and preparing meals for him. George said ‘its been a joint effort’ which they’ve developed over time.

The support could be two-way, with carers supporting each other and the person cared for who experienced ‘mental illness’. Sasha, for example, said when confidentiality agreements made it difficult for her and her husband to get information about how to support their son following his ‘diagnosis of schizophrenia’, she and her husband provided ‘really good support for each other’. Although it was a struggle, ‘when one tired the other one kept going’. (For disclosure of health information, the relevant section of the Mental Health Act 2014 (Vic) is section 346(g) which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.)

Kate described how she and her mum cared for her brother. She saw her role as providing general support for both her brother and mother.

Katherine explained that when her son would not take the advice of his psychiatrist or listen to her, she asked her former husband to speak to him. She thought their son seemed to listen to his father more than to her, when he was ‘unwell’.

A couple of carers talked about how input from close family members who shared caring responsibilities could create challenges where there were different approaches to care and supporting treatment decisions.

Whereas Saskia, her sister’s main carer, took a ‘preventative’ approach to her sister’s care, Saskia said their mother preferred to provide support when situations arose.

A few carers who were caring for a spouse mentioned challenges related to receiving or not receiving input on caregiving from other family members. Although Rich said he found his adult children to be ‘very supportive’ of him as caregiver for their mother, he felt their reluctance to ‘talk about it’ meant they had not yet developed an understanding of ‘the reasons’ behind what he said they at times perceived as his wife’s ‘unnecessary’ behaviour.

Tracey said she had experienced some ‘conflict’ about treatment decisions with a member of her partner’s family.

Outside support

Although most people interviewed were the main carer, outside support from other family members was also mentioned as a source of help for them and for the person being cared for. Carers felt supported predominantly by extended family, spouses, former spouses, children, grandchildren, friends and even family pets.

The kind of support carers talked about getting from family members varied. It could mean just feeling there was someone who cared about them, or who they could be ‘open and honest with’, as Lisa put it. Similarly, Rowan said one of his daughters was a good ‘sounding board’ and often suggested questions for him to ask his wife’s medical team. Financial help was also mentioned. For example, Sue’s father gave her financial help, which she said she would have struggled without because she was living on a carer’s wage while caring for her son, and in turn, Sue helped her recently widowed father: ‘We’ve lost my mum and I’ve been helping him as well … So we’re all helping each other’. In another example, Tracey’s mum asked her and her partner to move in with her so they could save money to go overseas. For a few carers, sometimes just having a family member pay a visit could make a difference.

Following receiving his diagnosis of ‘mental illness’, Rosemary’s son kept himself isolated. When Rosemary’s youngest daughter and grandchildren visited, the grandchildren played with Rosemary’s son and got him to come out of his room.

Outside support could, however, be sporadic, or related only to some aspects of the life of the person cared for. Some said family support had only been offered some time after diagnosis. Lisa mentioned that from her perspective, extended family were more supportive when her brother started to get better. Then they spent more time with him and acknowledged ‘what he’d been through’.

Elizabeth described how her relatives had offered different ‘sorts of support’ including Elizabeth’s sister who had been like a ‘second mum’ to her son.

A few carers mentioned getting support from friends. Christene, who was caring for her daughter, husband and grandson in a regional area, described how she had no parents or husband to give her support. The only respite and relaxation she said she got was when she met a friend with a large family: ‘So we sort of might swap kids, or we’ll take all the kids out there. They’ve got an in-ground pool and we sit back and make sure no one drowns, and dream that we’re sitting on a beach drinking pina coladas’.

Outside support could also be missing because family members lived far away or were not involved due to their attitude towards ‘mental illness’. Jeannie described her former husband dealing with their son’s ‘illness’ as something she said he told her he could not ‘handle’, and Sue and Rosemary said they believed some of their children were ‘afraid’ of their sibling’s condition.

Although she had one very close friend who was a support, Bronwyn said she felt some of her relatives and work colleagues did not ‘understand’ hers and her son’s situation.

Pets could be an important source of comfort, not only to the carer but to the carer and his or her loved one’s whole family. Kay described how her son ‘just absolutely adored’ his dog, and Bev mentioned a strong ‘connection’ between her son and her ex-husband’s dog who Bev said was ‘beautiful’ with her son ‘from day one’. The dog had once escaped from the house and found its way to the unit where Bev’s son was living.

Kate spoke affectionately about how her family’s dog gave emotional support to her, her parents and her brother.