Caring for someone with a terminal illness

Impact of being a carer

Becoming a carer for a family member or friend can have a considerable effect on the lives of those who take on this role. Medical professionals and other family members are likely to focus their attention and concern on the person who is ill, so the carer can become “the one in the shadow”, as Lesley put it.

Depending on the support needs of the cared for person, caring can be hard physical work, involving lifting, cleaning, personal care and disrupted sleep. Peter, whose daughter Olivia had Motor Neurone Disease, described how he and his wife contravened health and safety regulations when lifting her onto a CAT scan bed, but said that “When making decisions about your own health versus your daughter’s health, there is no decision – you just go ahead and do it.” They found that installing a small radio system between Olivia’s room and their bedroom helped immensely when looking after their daughter’s needs at night times. Many carers had their sleep disrupted and many talked about being exhausted most of the time.

For many people we talked to, caring was a round the clock responsibility. Several had moved in with a sick parent or brought them into their own home. While close proximity to their relative or friend made some aspects of caring easier, it also meant that there was little opportunity to ‘get out’ or ‘switch off’ from the caring role. Susan described caring for her mother with dementia as “a routine, a wheel you have to keep going”. After putting her mother to bed, she would often have an early night herself to cope with it all. Val, who looked after her husband with kidney cancer, said her own health deteriorated during her time as a carer but she could not afford to pay attention to the symptoms she was experiencing. Even after her husband’s death, the feeling of ‘I can’t be sick’ stayed with her. Lesley found that being proactive and trying to stay in control helps her. Heather took time out to go swimming when she could. The support of friends and paid care helped Dick to manage his caring role.

Taking on a caring role frequently triggers changes in family relationships, including that between the carer and the sick person. Some of those who were caring for a sick spouse said they felt guilty about having a normal row about normal things when the other person was so ill. Constantly having to make allowances is difficult, and not everyone took kindly to being cared for, but caring for their relative or friend had also enabled many people to become closer (see also ‘Changing roles and relationships’).

Lack of sleep was a concern, particularly for those caring for a person with dementia. Sue, caring for her father with dementia, described how she and her mother and sister would take turns sleeping in his bedroom to make sure he would not get up and walk around the house at night. Heather admitted to feeling irritated with her husband Bill when he called for her with a small task when she had just managed to nod off for a few minutes after an exhausting night.

Coordinating looking after their ill relative or friend, with their everyday lives can be challenging. While many carers had retired, or suspended or reduced their work to perform the caring role, others continued in full-time jobs. Several had to juggle caring for their sick relative with looking after the needs of their own family and children (see ‘Juggling caring with other aspects of life’).

Cassie put her own needs aside while she was caring for her father during the nine months that he was ill. Heather described how she sometimes would miss meals because by the time she had fed and settled her husband her own food had gone cold. Cassie would have liked to ask her father how he felt about dying but respected his silence when the doctor told him he’d only have a few days left. Some people felt very alone in their responsibility of carer, especially if they were a single child or an elderly spouse.

Although caring for their friend or relative was difficult at times, some people also talked about their positive experiences of caring. Katie said it had been a privilege to support and care for her sister-in-law when she was dying from cervical cancer. Georgina said it had been a joy to look after her mother who had dementia and bowel cancer.

A few carers decided to move their relative into a nursing home when they felt it was becoming impossible to provide sufficient support themselves any longer. Often this was a very hard decision to make. Some felt guilty about moving their relative outside of their familiar surroundings. Those who managed to keep their relative at home until their death so they were able to pass away surrounded by friends and family, were pleased that they had achieved this.

Several carers said the hardest thing about caring for someone with a terminal illness was the lack of hope that things would get better again. This could arouse difficult and conflicting feelings of wanting their relative to stay alive for as long as possible, but not wanting to see them suffer, and also, wanting the caring to end due to sheer emotional and physical exhaustion. Georgina described it as “living on an edge - unable to bear the fact that you can’t stop the inexorable force of death”.

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Last reviewed December 2017.


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