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The Royal College of Psychiatrists Improving the lives of people with mental illness

 

A Carer's Perspective

Clare Campbell, Member of the RCPsych Carers' Forum and Dr Michael Yousif, member RCPsych Public Education Editorial Board


 

The support provided by families and carers for people with mental illness cannot be overestimated. The hope for many patients, not only to cope with their mental illness from day to day, but also to rebuild their lives, would not be possible without it. The role of families in the 'triangle of care', together with the professionals and the patients themselves, affords a unique expertise to the provision of care. But it also brings its own set of challenges.

 

In this series, we hope to highlight through real-life stories some of the experiences and difficulties of caring for relatives with mental illness, to share these with other carers, and to raise awareness among professionals.

 

The responsibilities of supporting loved ones through their illness affects carers' own lives in numerous ways. Carers often feel a sense of isolation - from health professionals and also from their own friends and family. Carers support their relatives often while having to manage their own lives and perhaps the rest of their family's too. This burden can be difficult for others to understand. Support for carers is often less than forthcoming, leaving many feeling desperate and frustrated.

One of the most important sources of support for carers can be other carers. Sharing experiences and advice can offer solace and advice from people who know first-hand what that person is going through.

 

Learning from carers can also be of great benefit for mental health professionals, enhancing an understanding of the effects of mental illness in the context of the person's own life. A louder carer's voice can help create a more user-centred service and forge a stronger sense of partnership between carers and professionals in delivering mental health care."

 

Here Clare Campbell, a writer, journalist and broadcaster, shares her experience of caring for twin daughters, now aged thirty-four, who have suffered from a severe eating disorder for many years. Clare had previously looked after her older brother, a former Times journalist, who died from addiction to drugs and alcohol twelve years ago. Clare also has a sixteen year old son.

 

'No-one starts out their life expecting to become a 'carer'. Caring is something that comes unexpectedly – sometimes it happens overnight, or sometimes it just creeps up on you, happening whether you accept it or not.

 

‘Fifteen years ago when my youngest son was born I had two clever beautiful twin daughters who had just started at medical school. Shortly after this they started to suffer from anorexia, returning home from college after their first term at pitifully low weights. Both qualified doctors and now aged thirty four, my daughters still continue to struggle against this life- destroying illness today, leading to frequent family crises and emergency admissions to hospital.

 

‘In the meantime my son, now sixteen, needs my care and attention too in his adolescent years - perhaps even more so but in a more subtle way. Last but not least there is my husband. Time and time again the same theme has emerged in our family therapy sessions - that he feels jealous of the attention I give to all the rest of the family as opposed to how much I focus on him, and on our relationship as a married couple.

 

‘On a rational level I understand this completely. In addition to our daughters' illness, my husband also helped me to look after my older brother, whose addiction to drugs and alcohol led to his early and tragic death twelve years ago. My husband was a hero at the time, helping me in every way he could with the care of my brother.

 

‘But there were also moments of heart-wrenching conflict, such as the time he threatened to leave, and to take our young son with him, rather than stay in the house with my crack-addicted brother. Protecting one part of the family from another seemed wrong, and yet there was no doubt that the young and vulnerable could not be exposed to the damaging atmosphere of addiction and severe mental illness. Faced with such a choice, I had of course to refuse my brother, leaving me with overwhelming feelings of guilt on his death not long afterwards.

 

‘After so many years of having to share me with the other members of the family my husband naturally wonders sometimes when he is ever going to get to spend time with his own wife. On a rational level I understand this completely. We rarely have the opportunity to be together on our own, and when we do we often end up talking about our daughters' illness. Christmas, birthdays, and any form of celebration are all very tricky. No amount of planning gets round the sensitivity of eating and drinking in the presence of eating disorders, and it is not my fault. But on a subconscious one, I feel despairingly inadequate that there is simply not enough of me to go round, and that even as I struggle to cope, there are still members of the family who feel they are being short-changed.

 

‘My son, too, though rarely demanding, can sometimes become very upset by seeing how exhausted I am, both emotionally and physically by sisters who in normal circumstances would now be helping me, rather than the other way around. I don't want him to feel that he can never misbehave as an adolescent should occasionally, for fear that he is placing an additional burden on his mother. I am only too aware that I sometimes fret more than other mothers about the possibility that he might start taking drugs or alcohol, or that he will become overly worried about his GCSEs. Having lost a brother to addiction, and seen my daughters' lives almost destroyed as a result of their perfectionism and anxieties about academic achievement, it is difficult for me not to feel over-protective about my youngest, and so far emotionally healthy, child.

 

‘And yet, and yet, in the middle of all my troubles, my relationships with my husband and my son, even with my daughters themselves, are also the inspiration that keeps me going, the knowledge that my love for them, and theirs for me, are the strongest  weapons, and best hope we have for their recovery.'

 

November 2012

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