Mental health: ethnic minority carers’ experiences

Taking control - difficult situations and medication

Making sure people are safe
Carers said they at times needed to take control over difficult situations because the people they cared for could not look after themselves, or because they didn't admit to being unwell. Many needed to make sure the person they cared for (and others) were safe because they could make mistakes like accidentally leaving gas or water taps on, or leave the house without locking up. Others made sure their relative brought keys and mobile phones with them when they went out and that they kept their handbag or other belongings safe. 

During difficult periods, many wanted to stay with the person they cared for. These participants thought it would not be safe to leave them alone if they were very unwell, upset, or hallucinating. If they could not stay with the person, they 'travelled backwards and forwards' to 'keep an eye on things'. Several people said that their relative tended to 'wander about', and some had gone missing for days.

Mental health problems can affect patient and carers' social worlds more widely, and some talked about needing to calm their loved one down so as not to cause problems, or avoid conflict with neighbours and friends. But most of the carers said their relative would never be aggressive or violent. 

A few of the carers mentioned that their loved one could get violent when unwell and emphasised that it is important to understand such situations from the inside and not judge from the outside. Some had at times needed to protect themselves or other family members, sometimes by calling the police (see 'Services in the community'). 

Carers also said they sometimes needed to protect the person they cared for against bad treatment from other relatives or from services. People made comments such as 'if I was not around, would checks be done, would he be safe?' 

Some felt they needed to make sure their relative was safe in hospitals (see 'Dealing with hospitals'). One carer had even 'smuggled' her relative out of a general hospital ward because she thought staying there would be detrimental to him.

Dealing with difficult behaviour
People with mental health problems sometimes act in ways that those around them find difficult to cope with (see 'Relationship to the person cared for'). 

The carers we spoke to talked about everyday irritations, such 'endlessly walking up and down', shouting, talking to themselves or asking the same questions again and again. Some said they often ended up arguing with the person they cared for. 

Others talked about how their relative talked irrationally or had paranoid thoughts.

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When very unwell, some people talked about suicide and their carers said they had to monitor their behaviour closely. Some described what it was like dealing with emergencies and suicidal thinking or suicide attempts. 

People had found ways of interacting with their loved one when they were unwell, 'catatonic' or 'catastrophising'. People said it is important to keep calm, to speak gently without raising your voice and explain clearly what is going on and that 'the world is not coming to an end'. Some people said keeping eye contact was helpful, but for others this could make their relative more agitated. 

One woman said her relative could feel very helpless and said she used to 'remind him I am here' to support him, which would help calm him down. Others said it helped to leave their loved one for a few minutes or an hour and then return to the situation. 

Some carers said they were unable to 'control' their relative when they were unwell. Despite having 'tried all methods' some said hospitalisation was sometimes the only way to make sure their relative would not be hurt or get worse.

Looking after medication

Most carers thought medication was important in treating for mental health problems. A number of the carers we spoke to said they collected prescriptions and medicine for their relative to make sure he or she got it. Some arranged injections and other consultations with GP surgeries or hospitals, and one woman, together with other relatives, brought her husband to hospital every day for his medicine. Others said they needed to remind the person they cared for to take their medicine, and some would ring every day to check.

Some of these carers said it was 'a struggle' to get the person they cared for to take the medicine because of really unpleasant side effects or because they thought they didn't need it. A few of carers found it hard to know how much to tell their relative about possible side effects because 'it may mean he won't take it'. 

Not taking medication could lead to relapses, and several carers said the person they cared for could lose control or get violent when they stopped taking it. Some said they noticed signs of their relative getting worse when they had missed their medicine for a couple of days. 

People also talked about how they also needed to take control over medication for other conditions, such as diabetes, because the mental health problem made their relative forgetful. 

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Last reviewed September 2018.

Last updated November 2010.


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