Caring for someone with a terminal illness

Juggling caring with other aspects of life

Becoming a carer for a family member or friend can have a profound effect on the lives of those who take on this role. Many carers talked about the challenge of coordinating looking after their ill relative or friend, with other aspects of their daily lives, such as work, childcare, housework, social life and hobbies. Those who were caring from a distance had the added problem of judging when their help was needed and having to travel.
While some people we spoke to had retired from work before becoming a carer, others had tried to balance their caring responsibilities with holding down a job. Some people said that working provided a sense of normality and allowed them to forget their caring responsibilities for a while. However, tiredness resulting from caring roles could impact on work performance. Sleep deprivation was a problem for those who had to help their friend or relative in the night, such as with toileting. At one time Val’s husband had to get up in the early hours in order to be ready to be collected at 6.30 a.m. by hospital transport for his dialysis sessions; Val found it difficult to continue sleeping when he was up and about, and this impacted on her ability to work.
Jane found that she didn’t want to continue her job in social care once she became a carer herself; she spoke to her managers who allowed her to change her role. Georgina had found it difficult to know how to manage her work because she didn’t know how long her mother would live. She engaged live-in care workers and continued to work, but with hindsight, if she had known her mother would only live three months she might have chosen to take unpaid leave instead and not employ care workers.
Caring duties had to be fitted around work, or vice versa, and many carers had to take some time out of work to deal with medical appointments or emergencies. Some said their employer had been understanding and allowed them flexibility, although pay could be lost by taking time out. Reducing working hours or working from home were other ways of juggling work and caring responsibilities. The working environment made it difficult for some to deal with personal phone calls connected with their caring role, although calls to and from medical professionals were often unavoidable.
Those who worked freelance had greater flexibility over their working hours and could fit in their work at unusual times of day or night or reduce work commitments during periods when the patient needed more support. Lesley and her husband were business partners but the uncertainty over his life expectancy made it difficult to produce business plans for the years ahead. Saba was working abroad so had to deal with aspects of her mother’s illness by phone and come home frequently to accompany her to medical appointments.
Some people took extended periods of leave from work. Others decided to retire or quit their job in order to care full time. Cassie left her job both to help care for her father and run the family business. Sue took voluntary redundancy while caring for her father. Roger reached retirement age about six months after his wife’s illness was diagnosed.
Caring for small children was an added responsibility for some of the people we interviewed, often in addition to paid work. Emma had to get someone else to mind her children during the school summer holidays when she had to attend to her mother.
Keeping up with housework could also be a challenge while busy with caring tasks. Those carers who did not live with their sick relative or friend had to cope with running two households. Some people paid a cleaner to help with housework, but not everyone could afford to do this. Where the sick person had previously managed the household finances, carers had to take this on too.
Like work, hobbies could provide a temporary release from caring responsibilities, but many carers felt they had little or no time to engage in hobbies or any sort of social life. Some said that friendships had suffered and that any social life they had necessarily revolved around the person they were caring for. This could mean either continuing to do social things with the sick person, where possible, such as trips out or holidays, or inviting family and friends to visit the patient and carer together.

Susan occasionally got people in to sit with her mother so she could go out. Those who found opportunities to go out or have a holiday often felt guilty about doing so. Some said they never drank alcohol when out with friends because they were always ‘on-call’ and might have to drive. Poppy felt there would be plenty of time for socialising later, as she wanted to spend as much time as possible with her dad while he was alive.

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Last reviewed December 2017.


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