Caring for someone with a terminal illness

Changing roles and relationships

Taking on a caring role frequently triggers changes in relationships (see also Impact of caring and terminal illness on family and friends'). For many people, the challenge of dealing with a terminal illness changed the well-established roles they and their friend, partner, parent or other relative had beforehand. The people we talked to had become carers for different reasons, and how they viewed their relationship with their sick friend or relative whilst caring was influenced by what had gone before.
Some people did not like to think of themselves as carers. They regarded the additional responsibilities they took as a natural extension to the previous relationship. Peter (interview 06) said, “If you love somebody, you want to care for them”. Several others echoed this sentiment. Jane felt that no one else would have been able to care for her husband as well as she could, as no one else knew him as well.
Others had come to take on the role of carer out of a sense of moral duty, even though they found some aspects of the caring role quite difficult to cope with. Heather described how at first it felt wrong for her to help her husband with his personal care, because he had always been a very private man. For yet others, it was a practical decision because they were the ones best placed within the family to provide that kind of support. Katie was sceptical at first about taking in her sister-in-law and young daughter but eventually came to regard it as a privilege to look after her sister-in-law in such an intense way.
Many of those who cared for a parent or spouse talked about how roles within the relationship had become reversed from what they used to be. This was often accompanied by feelings of loss and uncertainty. Mary felt very scared when she had to take over looking after household bills and paperwork, as her husband had always dealt with that side of things. Susan needed to become a mother to her own mother with Alzheimer’s disease, which could be difficult to cope with. Georgina’s mother had dementia and bowel cancer and, at times, Georgina had to treat her like a small child, but was careful not to become overly controlling or make her feel useless.
However, a few of those who acquired new skills when their partner had to step back from the things they had done previously found the experience quite positive. Brian enjoyed expanding on his cooking skills. Jacqui learned to give her husband a shave and cut his hair.
Several carers witnessed personality changes in their sick friend, partner or relative as they became more severely ill. This could cause conflict and make it harder to get on sometimes, especially as most carers felt that it was wrong to argue with someone who is very sick. Julie would bite her lip more often to avoid a confrontation with her partner. Savita missed having long conversations with her husband and thought that he had become more self-centred. Tricia’s mother, who had Alzheimer’s disease, developed paranoid ideas about Tricia stealing things from her household. Tricia coped by relating to her like a professional care worker would to a patient. A few people felt that the illness had robbed them of the person they used to know and love long before they died.
Despite unavoidable tensions and some awkward experiences, many carers felt that they had grown closer to their sick friend, partner or relative during the time they had cared for them. John thought that he’d got to know his son Tim better in the last three years of his life than in the twenty years previously. Several couples said awareness that their time together was finite helped them to concentrate on what mattered most and to lay trivial arguments to rest.
Most carers who looked after a sick spouse talked about their sadness and sense of loss when the progressing illness made it difficult for them to be physically close. For many, cuddling up together had been an important way of giving and receiving comfort in the earlier stages of the illness. A few carers talked about feeling upset when they had to stop sharing a bed because their partner had to go into hospital or needed to have a hospital bed at home. After talking to a Macmillan nurse, Jacqui and her husband decided to send back his hospital bed so they could continue to enjoy physical closeness at night times.

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Last reviewed December 2017.


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