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
‘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