Carers of people with a mental health problem often find that life doesn’t turn out the way they had expected or dreamt about. Because of the needs and demands of caring, there are things carers don’t do, or do differently. For instance, some people work less, give up work or take early retirement. Others delay or avoid marriage and having children. Even if caring also gives new opportunities for learning, many can’t be as active as they would like. Social life can change, and some people talk about a lack of friendships and relationships (see ‘Children, family and social life‘). Caring has personal, financial and social consequences for the carer. Some feel unhappy with their lot, or that life is ‘on hold’.
How caring affects work and finances
Work was often mentioned when people discussed the opportunities they had lost or gained by being a carer. Several people who are working in social care or mental health said that their experience as a carer motivated their job choice. Others talked about the difficulties in juggling work and caring, and many of these people had decided to stop working. Having a flexible employer helped one carer keep working, while another said that the lack of understanding from her employer was partly why she gave up her job.
Working while caring became so stressful that Emily gave up her job.
After giving up work or reducing working hours, some missed their former colleagues, working life or the position they held at work. Others felt better because of reduced stress and because they could spend more time caring and providing better care.
Spending more time at home means Kiran can care better for his wife (recording in Gujarati).
Miriam has turned down opportunities for promotion because she doesn’t want the added stress.
Marcy gave up work to care for her husband and says it had financial and social cost.
Another carer couldn’t continue her career when she moved to the UK, and being a carer can make immigration even harder than usual.
Continuing a career in a different country is hard, and she thinks being a carer made it even…
Being on benefits or not working full time reduces income and can make it hard to make ends meet. People talked about not being able to afford the car, house, food or holiday they wanted, and some couldn’t even visit their family abroad. Some had not been able to give their children the education they wanted to, and one carer had great difficulty paying for the treatment of his sons when they lived in the US.
Other carers take unpaid time off to, for example go to hospital ward rounds, which are usually held during working hours. Some carers who don’t work or never worked were affected financially when illness forced their partner to give up work. Going onto benefits after having been self-sufficient can be difficult, and people described applying for benefits as complicated and even humiliating (see ‘Support from carers services‘).
When Anne’s husband stopped working he felt bad and life changed for the family.
Life opportunities and feeling free
Negative attitudes towards mental health problems can affect carers’ life opportunities. Two women we talked to said that people’s attitudes had made getting married and having children difficult. Amar, who grew up as a Sikh, had not been able to marry within her own community. When she married outside it, her family cut her off for many years. Angela, who is from Nigeria, could not marry until her brother’s health improved when she was 37. This was also when she could move to the UK. In her culture it is seen as shameful for a woman not to have children, so when Angela finally gave birth aged 42 she was extremely relieved and happy.
Mental health stigma meant Angela did not marry and start a family when she wanted, leading to…
Another carer had made the difficult decision not to have children because she and her husband didn’t want to raise a family while on benefits.
Losing some of their personal freedom was difficult for many carers. These carers could not be as social or active as they would have liked. Some found it difficult to keep in touch with family and friends. Some didn’t feel like going out to socialise – they felt they couldn’t enjoy themselves if the person they cared for might suffer as a consequence.
Being a carer limits what Anton can do, but he believes in putting his mother first.
Ramambhai feels that leaving his wife with others would have a negative effect on her so he…
Opportunities at home can also be affected by caring, for example, not being able to relax, sleep in or ‘potter around’ at home was described as frustrating. Others said they couldn’t go places on their own, that they couldn’t go on courses, go for walks or be impulsive. One woman had depended on her husband’s English skills and ability to drive, and now she feels isolated and as if ‘everything is gone’.
Since Wei’s husband got ill, they have little money and are socially isolated (recording in…
Rani feels restricted in what she can do because she needs to be with her husband.
Many carers find it difficult to plan for their own future or career as they always need to ‘be on the alert’ in case something happens and they need to ‘pick up the pieces’. Caring responsibilities interrupted some carers’ education and learning. Some people we talked to had tried to break out of this situation. Some had decided to leave the country for a while – a difficult decision. Some found on returning that ‘not much had changed’ (see ‘Getting the balance right‘).
While some carers believe it is important to care for yourself, many carers prioritise the needs of the person they care for over their own, saying ‘they come first’. This is often out of love and commitment to their family and as a cultural or religious duty. Some feel they have to wait until the person they care for is better before focusing on themselves. To some extent, ‘life is on hold’ and caring duties mean that little time is left for themselves. One woman even described it as ‘not real life’.
When life revolves around being a carer it may seem like a ‘pretend’ life.
New opportunities for learning
Despite the constraints of caring, most carers say their experience had in some ways provided opportunities and helped them grow as a person. People talked about how the ‘school of life’ had taught them better coping skills and about being better grounded. Some said the experience had improved their human qualities such as patience, compassion, understanding, empathy, humility and giving them better awareness of other people. Some felt stronger and better able to help others (voluntarily or professionally) and had learnt to be creative in constrained circumstances. People felt good when they could help other carers, and meeting ‘new and wonderful people’ had enabled carers to learn from, and help each other. Some had become active in carers’ organisations and campaigned for change in mental health services.
Amar’s experiences have helped her to develop life skills and to do her job better.
While some thought that caring makes you a stronger or better person, others didn’t believe that the hardship of caring is necessary for you to grow as a person.