Caring for someone with a terminal illness

Ways of coping and finding solace

Caring for a friend or relative with a terminal illness can be physically and emotionally draining. Most people we talked to had experienced points in their caring journey when they had felt very low, angry, frustrated or hopeless (See also Impact of Being a Carer’). We asked them what things had helped them cope during the most difficult times and gave them strength to carry on.
In addition to receiving support from family, friends, support organisations and professionals (see ‘Support for the carer’), carers described a wide range of coping strategies. Sarah started writing a diary. For Peter (Interview 06), who was caring for his friend, it helped to ‘switch off’ for an evening with a strong beer. Fiona experienced some release from having a good cry. Communing with nature or doing physical exercise also helped some carers to deal with difficult emotions. Some people coped by sharing moments of solace with their partner or relative. For Janet and Chris, music provided a refuge from dealing with Chris’ terminal cancer. John (Interview 12) had emotional but ultimately uplifting conversations with his sick son Tim, which helped him after Tim’s death. As practising Christians, John (Interview 10) and his wife Joyce found support in their church community and “knowing that they were in God’s hands”.
However, several carers talked about how sometimes there would be moments when they needed to get away from their relative or friend at least for a short time, to let off steam or just take a deep breath and put things into perspective before continuing in their role. After nine years of caring, Lesley said when she felt like screaming, she went to the bottom of the garden or sat in the bathroom for a while to have some moments to herself. Val described how sometimes she would escape an argument with her husband by having a cup of coffee in the restaurant of the hospice until he had calmed down. Susan learned that the best way of dealing with her mother’s angry outbursts during the early stages of her Alzheimer’s disease was to leave the room for ten minutes; by the time she returned, her mother had forgotten she had been angry.
Several carers said they were coping by keeping busy and not allowing themselves to think too much about their situation. They described how focusing on practical things that needed to be done each day had saved them from getting overwhelmed by emotions. However, most of them realised that shutting down their emotions and “keeping the lid on” came at a cost to themselves.
A few carers said their family and friends had helped them cope at some of the most difficult times (see also Support for the carer’). John (Interview 12) found that when his son was dying, his friends showed themselves in their true colours, and those who were supportive made a real difference to him and his wife.
Carers had equally mixed views and experiences of professional counselling services. Only a couple of carers sought counselling while their relative, partner or friend was still alive. Cassie had access to a counsellor as part of her own counselling training. Janet had counselling together with her partner Chris, but they felt it did not really add to their knowledge.
Several carers were offered bereavement counselling after their friend or relative had died. Some did not feel the need to take it up. Fiona was able to be with her mother right to the end, and knowing that she had done everything she could for her gave her a good sense of closure. A few felt that they did not want to talk about deeply personal feelings with a professional stranger. However, others found that talking to someone outside their regular circle of family and friends was extremely helpful.
Jane and her three teenage children coped in very different ways after her husband’s death. Her son did not want to talk, but she and her two daughters took up the offer of counselling. She found that the experience helped her “to put the cupboard in order”.
Carers views on religion as a way of coping varied a lot. Several carers said that even though they had had a religious upbringing, their faith had lapsed during their adulthood and religion did not offer them any solace. Others, who had been living a religious life previously found that their faith was tested to the limit when their friend or relative received a terminal diagnosis. For some, their faith did not survive this test. Katie found it hard to understand why her sister-in-law had to suffer for so long and said her faith took a ‘big knock’ as a result. For Julie, it was the social side of belonging to a church community that helped her cope, rather than religious beliefs.
However, for others, their faith was very important in making sense of their friend’s or relative’s illness and death and the challenges of the caring role. Savita believes in the healing powers of prayer. Theadora thinks talking with her terminally ill mother about the afterlife was comforting for both of them. Val received a lot of support from the Salvation Army who are helping to keep her husband’s memory alive. Some carers said that prayer, support from the church and visits from their minister had provided comfort.
For many carers, the thought that their actions and testimony might help others in similar situations was consoling and provided the motivation to take part in an interview for the healthtalkonline website. A few had also become active on committees or support groups to raise awareness about the condition of their friend or relative and make sure that carers and patients’ voices would be heard.

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Last reviewed December 2017.


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