Impact of caring on relationship with person cared for

This Talking Point is about the impact of caregiving on the relationship between carers and the person being cared for. Many of the carers we spoke with talked about how caregiving brought about changes in their relationship with the person being cared for that created challenges associated with ‘letting go’. While many described acceptance and grief as part of this process of letting go, some carers described how they had experienced personal growth through caregiving, and a few said they had also observed personal growth on the part of the person cared for.

Quick Links

Letting go
Acceptance and grief
When the caring relationship ends
Personal growth of carer and person being cared for

Sasha described a process of learning to ‘let go’ by changing her ‘attitude’. She said this enabled her to ‘enjoy’ life more and to better support her son to ‘stand’ on his ‘own two feet’.

Letting go

Letting go (or not being able to) could mean different things for carers, depending on whether carers were caring for a child, sibling, or partner. Some parent carers said they had been challenged to let go of, as Marta put it, ‘plans’ they had had for their son or daughter or of feelings of guilt about what their child was experiencing. Julie described coming to terms with her initial feelings of guilt about being to ‘blame’ for not preventing her daughter from becoming ‘unwell’.

For Julie, ‘letting go’ as a carer meant giving up certain ‘expectations’ and learning to ‘trust’ she had done what she could to support her teenage daughter’s treatment.

Many carers who were caring for a teenage or adult child talked about letting go in the sense of supporting the person being cared for to be more independent. This was easier for some than others. George said: ‘I think you’ve got to let the reins out as far as they can go … you can’t wrap them in cotton wool, you’ve got to be able to let them go to the point where they just can’t handle it and bring them back’. Others found that fully relinquishing responsibility was not possible. For carers such as Alex feelings of guilt arose due to their sense they had not carried out their parental responsibility to, as Alex described it, ‘get your children into their life and their work and running their own home and family’.

An older carer, Rosemary described how she had not expected she would still be taking care of her ‘grown up’ son at this age.

For others, letting go also meant learning to relinquish their worry about what ‘you don’t have control over’, as Elena put it. This could be difficult, but for some carers led to them developing a new appreciation for other aspects of their lives.

Lisa described how the process of trying to ‘deal’ with ‘not having control’ over her and her brother’s situation had challenged her to let go of her sense from a young age that she had to protect him ‘at all costs’.

For a few of the people we talked to who were caring for a spouse, letting go meant coming to terms with giving up plans they had made with their partner for their shared future together. Laura, Tracey and Christene, women caring for partners with severe mental health problems, described how letting go meant adjusting to a different kind of relationship – one more like a hierarchical parent-child relationship, and less like a relationship between ‘equals’, in Tracey’s words. Laura said she felt like her partner’s ‘mother and his carer and not his wife or lover’, while Tracey said she had felt her relationship to her partner became more like a ‘parent, guardian, gatekeeper role’ than her ‘partner’.

After she began caring for her husband, Christene felt doubly unsupported. Not only had he lost her husband who had been her ‘rock’, but she said the practitioners treating him did not consult her*.

For Mike, Rich and Rowan, letting go meant giving up their expectation their wives would ‘get better’, and accepting their wives’ condition was something that was present in their lives that they could not ‘control’. Rich, whose wife became ‘unwell’ after they had been married for 20 years, said he thought caring for a spouse and caring for a child were different. He believed the ‘very strong attachment’ a parent felt for their child, having ‘brought [him or her] into the world’, might prevent a parent from ‘walking away’ from a ‘mentally ill’ child. Rich did not think this was the case for spouse carers, and attributed his own ‘commitment’ to caring for his wife to his religious beliefs about and ‘admiration’ for ‘marriage’.

George said he found from his experience, male carers seemed less able to ‘handle’ coming to terms with the being person cared for’s mental health problems than female carers.

Acceptance and grief

Many of the family carers we interviewed talked about how becoming a carer for the person being cared for involved a process of letting go in the sense of accepting, as Saskia put it, that the person their loved one used to be before he or she became ‘unwell’ no longer existed. Rowan said he felt his wife was ‘definitely a different person’ and Kate said she sometimes saw ‘glimpses’ but that otherwise the person her brother used to be was ‘not there anymore’. Many of the carers we interviewed described acceptance as, in Elena’s words, ‘a process of grief’. Kay compared this process to bereavement, and Saskia said: ‘They don’t really talk about the grief process that goes along with learning to live with someone’s mental illness because you have to let go of the person that they were before’.

James described witnessing a ‘major change’ in his son since he was diagnosed with ‘mental illness’, and reflected on what the possible causes might be.

Elena described how another carer ‘enlightened’ her to the fact she was going through ‘a grieving process’. She said this marked the beginning of a ‘big learning curve’ for her.

When the caring relationship ends

A couple of carers talked about the impact on them or on their relationship after they stopped being a caregiver, which they said involved a process of letting go of being a carer, when the person being cared for became ‘well’ or passed away. Tracey said she had initially ‘felt lost’ when her partner’s depression was classified as ‘non-current’ three years ago. It took time for her to ‘adjust’ when her partner ‘became well enough’ to make decisions but Tracey said she now no longer ‘identified’ as her carer but, rather, as her partner.

Marta reflected on her sadness about her daughter’s death last year and described how, in some ways, it had ‘released’ her from her worry about who would care for her daughter when she died.

After Tracey’s partner’s clinical depression was classified as ‘non-current’, Tracey said she and her partner experienced a shift in the dynamics of their relationship. Both went through a ‘real adjustment period’ as a result.

Personal growth of carer and person being cared for

Many family carers talked about how they felt they had experienced, as Tracey put it, ‘personal growth’ as a result of caregiving. Some carers described how such growth had come out of, in Tracey’s words, the ‘real darkness’ of feelings of grief and dealing with conflicting emotions. Elena said she thought it was ‘the contrast’ between the ‘sadness’ she had experienced caring for her son and the ‘happiness’ she derived from ‘small’ things in life that brought her ‘pleasure’, which made her more ‘able to take enjoyment’ of ‘the now’. A few carers like Marta, however, said they felt caregiving yielded ‘no reward’.

Marta said she felt caring for her late daughter had ‘controlled’ her ‘life’, and had left little room for Marta in their relationship.

Some male spouse carers talked about how caring for their wives had initiated a process of redefining their understanding of masculine behaviour. Rowan said he had learned to ‘ask for help’, which he felt had ‘not taken away’ his ‘masculinity’, and Rich said caring for his wife had led him to address what he described as a ‘male issue’ of men not ‘talking’ openly about challenges they faced.

Rich said he had changed since he began caring for his wife in that he had developed a sense of the ‘value of sharing’ what he was going through with others.

Most carers, like James, George and Iris felt the person being cared for’s perceived social isolation reduced his or her ‘self-confidence’, as Iris described it, and many carers talked about the qualities and traits of the person cared for that they admired and felt were not appreciated by the wider community. George described how he believed his son was a ‘super human being’: ‘he lives a life where … he doesn’t go out of the house a lot. So there’s every chance he doesn’t think a lot of himself compared to his friends … and there is a positive about [son] is that he is a beautiful human being, so I tell him’.

Katherine talked about her admiration for the ‘brilliant job’ her son has done living with his ‘mental health’, which he told her he thinks about ‘every day’.

Tracey described how her relationship with her partner had ‘evolved’ into one in which they had assumed responsibility for helping each other become ‘a better person’.