Being a carer for a relative or friend admitted to forensic mental health services presents its own specific challenges. The role of ‘forensic carer’ can bring with it some significant impacts on life-course, identity, psyche, welfare and well-being, as well as social relationships and financial impacts. Notwithstanding this, the term ‘carer’ did not sit easily with this group, with many rejecting the label or saying they were not thought of in these terms by significant others, including healthcare professionals, who had assumed that the major caring role had devolved to them.
Official definitions of ‘carer’ often imply both a level of ‘substantial’ practical involvement on a weekly basis, and a level of dependency that this group do not easily relate to. For example, one person who did not relate to the term ‘carer’ did not do so because she considered her spouse to be ‘self-reliant’ and ‘self-controlled’. Poignantly for one survey respondent, being told by a member of staff ‘of course you care, you are her mother’ was a telling moment of validation which had not always been forthcoming in other relations with forensic mental health services staff. Interviewees used a range of alternative words such as ‘supporter’ or simply referred to the nature of their relationship with the person:
It’s my job as his mother (mother)
When supporting someone in hospital for a long period of time, forensic carers might deny that they are a carer, preferring instead to see their role as ‘visitor’, for example:
“He’s taken away from me now. I’m not a carer… I found that really strange going into the State Hospital and saying ‘carers’ you know but you’re not caring for them anymore.” (mother)
However, as ‘visitors’ they still clearly took an active role in the support of their relative, and were likely to continue supporting them in some way after discharge from hospital in the future.
Being a friend rather than a relative was a factor in whether or not interviewees referred to themselves as carers. It should be remembered though that the majority of people we interviewed were relatives or partners rather than friends. This could be because very few friends identified themselves as carers sufficiently to engage with our study. Friends who were visitors did not give the same accounts of emotional turmoil that close relatives described, nor did they consider a need to be kept more informed about the person’s care and treatment.
Some interviewees had only come to call themselves a ‘carer’ as a result of the role being thrust upon them when their relative entered forensic mental health services, as the following extract from one interview illustrates:
Interviewer: Would you have described yourself as a carer before he was in forensic mental health services?
Mother: No, definitely not, I mean because I mean he was very much his own person, I mean he was 21 when this happened you know (mother)
Others used the term ‘carer’ to denote the change in their status from family member to having a distinct role and responsibility as a carer:
Yeah I do use the word (carer), I probably wouldn’t have before… I’m his sister, so I would have just, you know, sister, that goes hand in hand, you’ve to support your family. But carer, yeah, because I’m dealing with everything yeah (sister)
For some, the trauma of the initial reason for admission to forensic mental health services, mixed messages from their relative, a lack of involvement in services, and isolation from other family members and sources of support, combined to make being a forensic carer an extremely trying situation. To describe how they felt about being a forensic carer, interviewees used terms like ‘anxiety’, ‘upset’, ‘frustrating’, ‘very scared’, ‘in a dark place’, ‘sadness’, ‘bleakness’, ‘fear’, ‘draining’, ‘a real struggle’ and ‘duty’. It sometimes felt like no-one was on their side:
Not only can you be up against [relative’s name] who doesnae always have her own best interests at heart – and she can tell ye: ‘aw, ye don’t care, ye don’t love me, you’re no doing this for me’. You’ve got carers, nurses saying tae you, ‘well, why are you making this decision?’ and you go, ‘because she’s unable to make this decision’. You know, I find that quite hard…(sister)
They had mixed feelings about how much to get involved. The experience could result in them feeling powerless and institutionalised:
Sometimes I’ve been guilty of laying off for a while, I feel guilty about it. I didn’t talk to him for maybe a month at a time but it’s because he does get very ill at times you know and very hard to handle you know. (father)