Mental health: ethnic minority carers’ experiences

Relationship to the person cared for

When someone gets a mental health problem, they can change a lot as a person. Their relationships to people around also change and mood swings or difficult behaviour can take their toll on relationships. The carers we talked to agreed that compassion and love was crucially important when someone gets ill, and that good, supportive relationships are key to help the person who is unwell to get better.

When people change
Some people described how the person they cared for had changed so much that it was as if he or she had become a different person. Some said their loved one became so withdrawn that it was impossible to 'know how their mind works' or that 'you might as well talk to a brick wall'. Carers can find the lack of communication or involvement challenging and even hurtful, making the relationship difficult. In the cases where the cared-for did not know or accept that they were unwell it could be almost impossible to talk about the situation.

Carers are often with the person who is unwell almost 24 hours a day, and some described the relationship as 'intense'. Repetitive, irrational or passive behaviour; dependence; loss of inhibitions and mood swings were all described as causing irritation, frustration, anger and even fear. Such behaviours can lead to arguments, quarrels and unhappiness. 

Mental health problems and side effects of medicines can change people's energy, mood, humour, emotional wellbeing and sex drive, all of which can affect close relationships. It can be hard to talk to close relatives like your mother or child about such intimate things. For a carer it can be difficult to 'continue as usual' when you have seen a loved one in undignified situations, such as breaking down, becoming incontinent or being arrested. Some carers found it difficult to have a 'normal' conversation with the person they cared for, without 'always looking for signs' that something could be wrong.

Changes in role and relationships 
In all cultures there are expectations and rules about how mothers, fathers, children, partners, spouses and other relatives should relate to each other. Although this can vary from family to family, or between generations, these rules guide how we behave towards each other. For example, we expect parents to be figures of authority and look after their children, and for husbands and wives to be able to rely on each other's strength and support.

Roles and expectations often change when someone becomes a carer for another member of the family. The usual roles of parent and child can be switched (role reversal) so that a son or daughter becomes more like a parent, and the parent more like a child if children take charge of medication or daily routines of parents (see 'Taking control - difficult situations and medication'). Those caring for a child may have to come to terms with never being able to have an adult relationship with their son or daughter. 

Becoming your parent's carer can mean that you need to think about how the authority in that relationship will change. Likewise, having to take on a 'parental' role to a partner or spouse can also feel difficult, and it can change the nature of the relationship.

Some of the female carers we spoke to said that their husbands had been the main breadwinner and the 'head of household' before they got ill, but now the women 'can't rely on them' and needed to take on new responsibilities for paying bills, applying for benefits and 'making all the decisions'. Likewise, some of the male carers had to take on tasks that their wives had done before such as cooking and taking care of children.

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People caring for young adults understood that they wanted to do things other young people do, despite their mental health problem. These parents described difficulties in striking a balance between allowing usual parent-child disagreements and rebellion and being a responsible carer.

Managing a changed relationship
When their loved one got a diagnosis this helped some carers to realise that the difficult behaviour was due to illness, which made it easier for some to understand and live with it.

Many carers we spoke to managed to have a rewarding relationship with the person they cared for, even if it was different from what they had expected. A couple of people even felt the relationship was better or closer than before the person got ill. Several of those caring for their child felt they were the best friend their son or daughter had.

Two carers, who both worked as mental health nurses, found that their roles as mothers and as nurses clashed when their sons got mental health problems. One said that 'looking after him as a mother and insisting that he takes his medication wasn't working'. In the end, she decided to concentrate on her role as a mother and leave issues of medication to the health professionals who looked after him.

We describe more about family support and relationships in 'Children, family and social life' and 'Support from family, friends and community'.

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Last reviewed September 2018.


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