Identifying with the term ‘carer’?
The 3 sources of data highlighted that those with a caring role did not necessarily identify with the term ‘carer’, preferring to think of themselves as relatives or friends who were sharing the journey with the ill person. Researchers at the workshop reported that they sometimes avoided using the term ‘carer’ when recruiting carers to research studies.
The literature revealed that the transition into caring was often a gradual one and was associated with a wide range of responsibilities [
24,
25]. Small duties accumulated until carers recognised that they were undertaking a significant supportive role – particularly if they had to give up work at that point [
26]. Many carers saw the caring role as intrinsic to their relationship as wife, husband, son, daughter, sibling etc. [
26‐
32]. Over time, some carers did identify with the term carer, yet others rejected it completely [
26]. Some caregivers preferred to be self-sufficient, feeling that they did not yet need help [
24], or that support from external paid carers was a potential intrusion [
27,
33]. Furthermore, acknowledging the caregiving role meant recognising that the ill person needed to be cared for [
26]. In some circumstances neither the carer, nor the cared-for person may be ready to face this reality.
The focus group participants discussed when they felt they became carers. Faye felt she became her mother’s carer when her mother lost confidence in her activities of daily living, and subsequently her independence. Faye described the reversal of roles that took place as the caring role evolved.
“Where I feel the carer became what was the daughter, the carer part became more relevant, was when she lost that confidence.” (Faye, caring for her mother).
For some, it was only when the caring role was acknowledged by others that they realised they were ‘carers’ [
34]. For example, Alison’s GP told her that she was a carer and therefore could be on the carer register.
“Alison: it was the GP, my GP, who said “you are a carer and I need to put you on the register” and this…
Researcher: Ah, interesting, OK.
Alison: And I was going “oh!” And so it was news to me, you know, I just assumed I was the daughter” (Alison, cared for her father).
The focus group participants highlighted that acknowledgement and recognition of their caring role often occurred when there was a crisis, e.g. if the illness of the cared-for person deteriorated markedly, and the extent of their caregiving role came to light. However, recognition could be positive. For example, being identified as a carer meant Alison was entitled to particular benefits through her employer. Workshop researchers reflected that following a crisis, it was sometimes a relief for carers to be offered a package of paid care e.g. when the cared-for person returned home from hospital.
However, for others, being termed a carer could be seen as detrimental or offensive.
“She [carer] loved him [patient] dearly, they loved each other dearly, and she’d been providing such an amount of care. She was getting him up, helping him with the shower, you know, he couldn’t go to the toilet without her, she was there all the time, she was in a carer role. And when I met them and I was asking about benefits and I said something and remarked that she was a carer. And she sat up really straight and she said, and she got really flustered and said “oh, am I a carer now?” Because he’d been living with these strokes and she’d been doing this, you know, the disability from the strokes for so long, suddenly he’s got lung cancer and he gets referred to us [specialist palliative care]. And I said “carer” and she was really shocked by that! And that made me think “oh, crumbs!” you know, the word ‘carer’ has such a big weight” (Health professional, community specialist palliative care nurse).
The caring situation is complicated and what is right for one family may not be right for another. Some carers may welcome paid care and others may find it an intrusion, making a private place, public. If carers do not recognise themselves as such, they are less likely to seek out support which suits their needs.
Changing relationships in the context of caring
How existing relationships could be challenged by the caring situation was highlighted in all 3 data sources – particularly by focus group participants who were caring for a parent. For example, Pamela was the main carer for her mother who suffered from dementia. Pamela’s mother did not accept her need for care and still wanted to be independent, so it was difficult for Pamela to ask for help and explore the services available to her and her mother. This increased Pamela’s feelings of isolation and concern. Pamela also highlighted the challenge of managing existing relationships with family and friends. Pamela’s feelings were echoed by other dementia carers in the study.
“But I do feel that relationships slide, both with your children, with your husband or your partner, I just think it all just… And I think that, you know, your children and your partner or your husband maybe understand initially but when it’s for some years, you know, it begins to bite.” (Pamela, caring for her mother).
Relationships were further compromised if carers were experiencing stress, anxiety and tiredness. Researchers at the workshop highlighted that the relationship between the patient and the carer may be challenged if the carer thinks they are caring, but the patient does not think they are being cared for. This could be another reason why carers remain unidentified and potentially unsupported. Joan described her frustration as her husband was a perfectionist by nature, but she saw that compromises had to be made in light of his deteriorating condition.
“Like yesterday morning, I sort of had like been sort of, getting annoyed about things because he’s a perfectionist and I said things just can’t be perfect now” (Joan, caring for her husband).
The relationship between the carer and the cared-for person could affect the carer’s willingness to present themselves as someone in need of support – particularly if the cared-for person is resistant to, or does not think that help is needed [
24].