Growing up with mental health problems in the family
Some of the carers we spoke to had grown up with mental health problems in the family and had gradually become the main carer. Some of these carers said they ‘didn’t know too much about what was going on’ until they approached their teens and started to suspect ‘something was wrong’. Others had always known about the mental health issue even if ‘no one talked about it’. While some had been given a lot of responsibilities for cooking, cleaning, and looking after brothers and sisters from an early age, for others, the caring duties only kicked in when their mother or other relative died or became ill themselves.
Caring for a son or daughter
Of those who cared for their child, many had started noticing signs of something being wrong when their son or daughter was in their late teens.
Gou was unprepared when his two sons developed bi-polar disorder partly related to drug use.
Some said their son or daughter became very withdrawn, unable to work or study, that they were talking to themselves, restless or that they didn’t express emotions in the ways other young people did. Many of these carers said their son or daughter had been using drugs in the period before they got ill.
Looking back, some said they hadn’t picked up on the signs of mental health problems because they hadn’t known what to look out for.
Jane thought the early signs of her daughter’s mental health problem were normal ‘teenage stuff…
Some parents had struggled to get their son or daughter to see a doctor. For some, a diagnosis was made quickly, but others had to wait a long time before they knew what was wrong.
Nick was worried about his son’s behaviour, but was told by doctors it was normal.
Caring for a partner, parent, or other adult relatives
For some of the carers, especially those caring for a parent or a husband or wife, their caring role had emerged gradually over many years.
When his mother’s dementia got worse at the same time he had depression, Anton stopped working…
Others talked about how they had worked very hard when they first arrived in the UK and had assumed that the first signs of mental health problems were really just tiredness or ‘wear and tear’.
For some, the person they cared for had other health issues in addition to a mental health problem, such as epilepsy or diabetes. This had made it harder to get a diagnosis and proper treatment. One carer said it had taken 23 years before his wife was diagnosed with depression.
For others, their caring role came about more suddenly.
Nita’s mother’s manic depression came as a shock to her.
Aiko only learnt about her new husband’s mental health problems after she moved to the UK.
Reasons why people care
Many of the carers we talked to said the reason they cared was simple: they needed to look after their child, mother, husband or other relative. Some said they had never thought about why because ‘blood is thicker than water’ or ‘he is my husband, who would care for him if I didn’t?’. Many of the parents made comments such as ‘I am his mother; I should take responsibility and care for him’. One mother joked that ‘I have told him that if I was his wife, I would have left him’. Some said that ‘giving up ‘on a relative would be ‘like I disowned him’. People also said it was part of their culture to feel responsibility for others (see ‘Relationship to the person who is cared for‘).
Some carers saw it as a moral or religious duty to care, or they believed in the values of giving care and love to those who are ill or vulnerable.
Indira and her cousin decided to stick by their aunt when others gave up.
People said they needed to know they had ‘done their best’ to help their loved one. Some felt helping others was rewarding and said they also took part in other types of voluntary work to help and to ‘give something back’. Many of the carers we spoke to had other caring responsibilities too, and some were active in voluntary work saying, ‘it is in my personality to try to help others’.
Leah likes to help other Chinese people with translations when they go to the doctor (recording…
The qualities of carers
When people described themselves and other carers, many talked about how carers are able to cope because they are strong people. Many described themselves as having ‘a strong will,’ as determined, or not being a ‘giving up kind of person’. Several commented that caring ‘comes from the heart’ and requires passion and a wish to help others. Carers were also seen as people who wanted to tackle problems instead of ignoring them, and ‘fight for the person you care for’ to ‘keep people alive’. Others said carers had personal qualities that were lacking in many professionals.
Ramila says carers have an understanding and hope that professionals don’t necessarily have.
Other qualities people said carers need to have included ‘understand[ing] the restrictions of life’, to not ‘expect the earth’ and to be able to put up with a lot of uncertainty and responsibility.
Ramila thinks carers sometimes put up with ‘being blamed’ because they feel so responsible.
Taking on too much
However, some carers really struggled with their responsibilities. Some said although they were ‘reasonably confident’, caring for someone with a mental health problem had really ‘stretched’ their personal resources. One or two said it was ‘standing up for someone against the NHS’ that had been the hardest battle.
Other carers said that it was in their personality to take on too much responsibility and to put others before themselves, and some found this really difficult (see ‘Getting the balance right‘). One carer even said she was so ‘enmeshed in it that it is hard to talk about myself as a separate person’.
Raye felt she had to take on responsibility for her father, brother and sister but she says she…
Some said carers need to think about their level of responsibilities because taking on too much ‘is not healthy for any of us’.
Others, who struggled with their caring responsibilities said they had needed to take a ‘healing journey’ or that they thought it was important to have support services in place to avoid ‘young carers ending [up] like me’ (see ‘Stress and carers’ health‘ and ‘Advice to other carers‘).