Caring for someone with a terminal illness

Financial issues when caring for someone with a terminal illness

When someone is diagnosed with a terminal illness there are likely to be financial implications to cope with. Carers may give up work to care for their friend or relative, or they may need to pay for care at home or in a care home. Additional costs of heating bills, food and laundry, and personal care can all mount up. These extra expenses can create financial worries and add to the stress that carers and their friend or relative are already going through. Some people we talked to said that finances were the least of their concerns at this time. However, caring was expensive and they had to make ends meet, sometimes with little support from the state.
Some carers we talked to felt fortunate that they had savings, pensions and critical illness cover or that they or their relative were able to take time off work at full pay. This had enabled them to look after their relative or friend. Many said that without this they could not have coped financially.
 
There are several state benefits available to people who are diagnosed with a terminal illness; for the latest information see GOV.UK.
People who were not eligible for social services care needed to pay for care for their relative, which is often very expensive. Some people needed live-in care workers, others had care workers coming into the home several times a day or week, and some needed to pay for a residential care home. Carers who are looking after their sick friend or relative’s needs throughout the day but need to sleep at night can obtain a night sitter, whose role is to stay awake and deal with whatever care needs arise, although Tricia was told by an agency she contacted that a night sitter could not deal with her mother’s incontinence (see Tricia's clip below). Cassie’s parents hired care workers to come into the home through a private agency that had been recommended by social services. They were assessed and paid a contribution towards it.
In some areas of the country there are services that provide crisis response and short term care for people at the end of life that are provided free of charge. These services can be accessed through community health professionals and hospital discharge teams. Grants to support daily living expenses are also available from Macmillan for people with cancer who are on low incomes.
 
A few people continued to have financial worries after their relative had passed away. Funeral costs, probate issues, loss of income and the additional costs when caring for their ill relative had left some people with debts they needed to repay, at a time when they were finding life very difficult.
 
When Janet’s civil partner Chris died of ovarian cancer, she was grateful that she was able to receive a survivor’s pension which meant that she didn’t immediately need to go out and earn some money. Having this financial support helped her when she was adjusting to life without Chris.
 
A few people did not have a pension or an income after their relative died, which made life financially hard. Jacqui received bereavement benefit for a year, which she used to pay her heating bills.
Free financial advice is widely available, including from: Citizens Advice Bureaux, community and neighbourhood centres, Maggie’s Centres, Welfare rights (www.welfarerights.net), Age UK and Christians against Poverty.

Last reviewed December 2017.
Last updated December 2017.

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