Carers agreed that caring for someone with a mental health problem can be very hard emotionally. People thought that stress, worry and not getting enough rest to ‘recharge the batteries’ could even hurt their own mental and physical health. Dealing with difficult behaviour, feeling insecure, grieving over loss and being dissatisfied with health and social services were common reasons why some carers felt anxious, depressed or physically ill.
The people we spoke to had been carers for up to 40 years. Some grew up with mental health problems in the family, while for others the onset of mental problems in a loved one was a sudden ‘shock to the system’ that they had not been prepared for. Although all tried to care with love and dedication, they also talked about the stresses and strains involved.
Stress and worry
For some it is not so much the practical things about being a carer, but the ‘head space’ it takes up that is toughest. Time of diagnosis, hospitalisation (which for some involved concerns about culturally appropriate services) or other dramatic events, or the initial period after arriving in the UK were times when people felt particularly tense and stressed. Some people said their stress levels went up and down with the health of the person they cared for.
Emily describes some of the stress she went through when she first arrived in the UK and started…
People worried about things like the future, their children, money, their own wellbeing, the health and safety of their family, and the health and treatment of the person they care for.
Raye puts everything on hold when she worries about her father.
Worrying about someone who is unwell is natural, but it can also take its toll. People described being ‘consumed by worry and anxiety’, feeling panicky at times, or that life was full of ‘crisis and drama’. Some also felt guilty about ‘not doing enough’ and some felt they may have contributed to the mental health problems. Many said they were always on ‘alert’, that worry was always there in their minds, and that they constantly looked for signs or symptoms of their loved ones getting better or worse.
One carer felt like (after a hard day at work) she needed to ‘walk on eggshells’ at home. Others found that when they gave up work and spent all their time with the person they cared for it could lead to more tension and arguments. Some felt they alone had to ‘absorb’ all the stress of the situation themselves, which can feel very unfair.
Ramila thinks it is unfair that carers absorb all the stress without enough support.
A big worry for many carers was about who would look after their loved one when they themselves were not around anymore. One woman who cared for her husband felt that she could not have a peaceful death if she died before him.
She worries about who will care for her daughter when she and her husband are gone (played by an…
A couple of people worried less when the person they cared had a good period or was looked after in hospital. For others, getting important life issues sorted, such as seeing your children getting married, could reduce levels of worry and stress, and some had learnt how to ease their worries (see the section on ‘Looking after yourself and getting help’)
One women found it patronising when services try to teach you how to express worry, and others said that the ways of expressing worry, stress or grief in their culture may sometimes be misunderstood (see ‘Services and minority ethnic communities‘).
Having other people talk about ‘how to express emotion’ may be insulting to carers.
Frustration and grief
Many carers expressed anger and frustration. They said living with the symptoms of mental health problems or the side effects of medication, and not having enough support to care, can really ‘get on your nerves’. A couple of people said disagreement within the family about treatment was another source of frustration. A number of carers were angry and frustrated with the health and social services, saying they felt let down, badly treated, that they were ‘hitting their head against a wall’ and that this led to stress and trauma.
Some felt patients’ lives were being wasted in hospitals and one woman said she ‘screamed and howled’ in her car driving home from the hospital after her father was sectioned.
The ways relationships change due to mental health problems sometimes lead to grief. One woman felt she had lost ‘the man of her dreams’ and now needed to embrace a new husband, one that she would not have chosen to marry.
Anne is grieving because she feels she’s lost a husband.
Those caring for someone with dementia felt sad that there could never be any improvement, only deterioration. Others grieved that the person they cared for would perhaps never be able to fulfil their potential. One woman said she grieved that she would never be able to do ‘the things sisters do’ together with her younger sister.
Jane grieves that her daughter will never have friendships, get married and have children (played…
Being unable to take part in important events with family and friends abroad, such as funerals, was another source of grief and sadness.
She is sad she could not be with family members in India when they were dying.
Carers’ mental health
It is natural to have ups and downs, but living with constant stress can affect mental wellbeing. Some carers described lack of motivation, feeling helpless, ‘fed up’, that there was ‘no light at the end of the tunnel’ or said they felt a lack of purpose. Some felt that the situation had ‘knocked the confidence out of me’, that they felt insecure and generally unhappy. Two women, both mental health nurses, felt helpless because while they could help many patients, their own relatives were not getting better despite their help. Several of the carers we talked to were, or had been, on antidepressants, and some were receiving counselling or Cognitive Behavioural Therapy. Several others suspected that they might be depressed. A couple of people said that having more than one person on antidepressants in the same household would be ‘just too much’. Others had not really discussed feeling depressed with anyone.
Aiko was reluctant to take medication for her own depression.
Others again had, at times, worried about their own mental health, either because of the stress they were under, or because they feared they could have inherited a mental illness. One person emphasised that services should be in place to prevent mental health problems being passed on from one generation to the next, whether they are genetic or not. Another carer felt lucky she had avoided the serious mental health problems of three other members of her close family.
Raye has depression and an eating disorder, but feels luckier than her father, sister and brother.
See more information about depression.
Carers’ physical health
Carers believed that stress, worry and mental health problems could also hurt your physical health. Some of the carers we talked to said that their physical health had indeed suffered. Being tired, exhausted and lacking in energy was common. Lack of sleep was also a frequent problem, and one woman explained that her husband’s depression made him restless at night, which kept her awake, which in turn had made her high blood pressure worse. Others talked about aches and pains, respiratory problems, tensions, and stomach problems.
Rani’s husband keeps her awake at night, which affects her blood pressure.
Other health conditions people linked to stress were: weakened immune system, asthma, bladder weakness, eczema, migraine, heartburn, inflammation of the mucous membrane in the mouth and depression.
Many carers discussed the need for carers to look after themselves, take time out, find help and find ways of coping with stress and worry. The ways carers coped with stress and worry are described in ‘Getting the balance right‘.