Impact of caring

Impact of caring for someone in forensic mental health services

Interviewees and respondents to the survey reported a range of sometimes profound consequences to assuming a caring role in a forensic context; these effects could relate to their relationship with their relative, relations with services, or the effects of stigma.  For many, this had implications for their personal sense of well-being and resulted in, at different times, experiencing a variety of intense emotions including, variously, sadness, searing grief, frustration, anger, shame, fear, and anxiety.

At times, carers reflected upon deeper effects of an almost existential nature, impacting at some essential level on their sense of self.  For some individuals, caring was viewed as such an implicit part of their life that the personal consequences were not always at the forefront of their thinking, revealing a tendency to minimise impact on occasion:

I would probably, my first reaction would be to say, that it hasn’t. And the reason I would say it hasn’t is, she is my sister, and I’ve always done it. So that’s why I would say, no, it hasn’t impacted. On the flipside – my God, it’s impacted greatly. You know, my husband, kids, my job – it affects everything.  (sister)

However, for many, there was a common theme around the all-consuming, life-changing role of being a carer – ‘it changed my life’.  Typically, forensic carers identified stress and strain as profound and life-changing effects of the caring role:

I had one episode where I had an anaphylactic shock which I was absolutely sure it was related to high stress, yeah so absolutely, sleepless nights yeah. (mother)

Increased stress had physical consequences such as reduced resistance to illness:

It’s made me really ill cause I’m never out the doctors surgery, and I take like this cold, is the mother and father of all colds I’ve ever had you know, it’s just been flooring me. (partner)

One carer identified the long term impact of caring on her mother:

Obviously as she’s got older, the stress levels, mum actually suffered a stroke a few months ago, I don’t think you could pinpoint it to anything in particular, but obviously  her ability to deal with things as well as she did 25 years ago is lessened. (sister)

Another identified the insidious wear and tear of dealing with stress over the years, including having been a carer for many years prior to her relative’s admission to forensic mental health services, the stress of interacting with mental health services, such as, in this instance, dealing with medical staff:

 The downside is that it’s wear and tear on yourself, it’s pretty stressful trying to maintain that without… and keeping calm so I think calm probably did go out of the window a few times, but that whole… because of just the whole journey that I have had and yeah it’s been hard fighting with doctors and getting… having to run back and forwards trying to get medicine for him, it just… aye wear and tear and just kind of just brings you down… (mother)

In addition to the impact on their physical health, carers also identified mental health issues:

I think I have found it at times challenging because it’s affected my own mental health a wee bit, apart from that it’s been… the whole experience of it, the whole yeah experience of it, meeting my partner has been good and I’ve got better through it and I hope and I think he has too so… (wife)

Indeed, some forensic carers took on the caring role at a time when they were already under treatment for mental health problems of their own, rendering them more vulnerable to stress, complicating their own potential for recovery, and indicating particular support needs.  They did not always identify mental health issues directly but outlined the compound impact to their well-being and wider life:

I can’t move on with my life, I feel like I’m stuck, I mean my job, I go to work but I don’t enjoy it and I can’t wait till the day is over, I don’t know if that’s because with my son or what but yeah I think it’s changed me as a person, I haven’t got any desires to go on holidays and do things, I feel I’ve changed quite a bit really… (mother)

Difficulties coping with their relative’s illness or challenging behaviour also had a financial impact, including on the ability to work effectively or maintain themselves in employment:

I’d been considering working part time so that’s partly down to why I now work part time because well about 16 years of that is just probably taking its toll. (mother)

For others, however, work offered some degree of ‘distraction’ or relief from the stress of caring or dealing with powerful emotions:

At one point I was almost overwhelmed by stress but what kept me going was my work. I couldn’t bear the thought of being at home and thinking about [name] all day. I felt dreadful guilt at that time. Felt I had failed in her upbringing in some way and caused the illness. (mother)

There was a seeming inconsistency in responses to the carer survey between qualitative information confirming a litany of negative health effects (with only two out of 56 free responses stating no such impact), and the quantitative data reporting a sense of good health.  In this regard, 62% of survey respondents rated their physical health as good or excellent, yet 20% declared a disability, including a number of quite serious chronic physical illnesses.

The qualitative responses articulate some carers’ view that some of these chronic conditions may have been brought on or exacerbated by the caring role.  That one respondent could report that this ‘was just part of life’, might reflect the stoicism of the caring role, as well as the difficulty in drawing causal links between caring and ill health.

A few carers went on to point out factors that helped mitigate stress. Some found family and friends supportive, while others found it helpful to be able to share the responsibility of care:

…probably because we are quite a close family, and if I’m really tied up with something, you know, at this stage in my life, I’ll say to my older sister ‘can you make sure you’re there for [name], can you phone her, can you do this.’ And my mum as well. The fact we’ve each got some buffers wi each other and wi her, support for each other, I suppose that lessens the impact… (sister)

Despite all the stress and strain described, carers could identify personal growth from the experience:

It’s made me more understanding of what other people have got to put up with, more empathetic to other folk you know.  A lot of things I took for granted a lot of the time like when I was single.(mother)

It has been positive to look after someone else and I have got to know them better because of this. (survey respondent)