Caring for someone with a terminal illness

Other caring roles

In addition to personal care (see ‘Helping with personal care’) there are many things that carers do to help and support their sick friend or relative, such as finding information, coordinating treatments or care, speaking to professionals, providing moral support and companionship, or doing housework. These things may not always be recognised as part of ‘caring’ but nevertheless are all part of looking after someone who is ill and can involve considerable time and effort.

Patients often wanted their friend or relative to help them find information and make treatment decisions. Some carers had been happy to source information and talk through treatment options but preferred to leave decisions to the patient, whereas others made decisions jointly. Simon had found it scary helping his wife to decide whether to enter a clinical trial because he wanted to do the right thing for her, but with hindsight he has mixed feelings about their decision.
Some people moved in with their friend or relative to care for them, or moved them into their home with them. Those who cared from a distance would phone or visit frequently. Many carers accompanied the patient to medical appointments. Cassie was shown inside the radiotherapy suite so she could understand why her father found it frightening. After her mother had a deep vein thrombosis (DVT) Lynne had to take her to hospital daily for a blood thinning injection. Saba often took her mother to the GP’s surgery because the doctor wouldn’t always make house calls.
 
Sometimes carers felt they needed to call a health professional out to see their friend or relative at home or to call the emergency services. Heather had stayed off work one day because her husband had bad chest pain and she ended up calling an ambulance. Victoria called their community nurse when her husband was having a panic attack, and Lynne called the Macmillan nurse when her mother was in pain.
Running their friend or relative’s life as well as their own could sometimes be onerous, and some carers said they spent a lot of time on the phone, not only organising care or treatments, but arranging financial benefits, sourcing equipment or seeking solutions to problems. Lesley phoned the hospital while on holiday abroad to arrange her husband’s next blood transfusion.
Carers sometimes felt a need to act as an intermediary between their friend or relative and health professionals to ensure they received the best care. Reasons included' to try to speed up tests, treatments or see a doctor sooner; to ask questions on their friend or relative’s behalf; to try to prevent things happening that the carer believed were not in the sick person’s best interests; to ask for pain relief or for the sick person to receive more attention from hospital nurses. Theadora persuaded staff to allow her mother home when she was scared of staying in the hospital. Saba prevented her mother being given sedation when she wanted to remain alert. Jane prevented her husband having an x-ray when he was dying. When a Marie Curie nurse came to sit with Henry’s partner at night he had to ask him to stop making noises as it was disturbing Jane’s sleep. Later, when Jane was approaching death, Henry spoke to her doctors about stopping medication.
A natural extension of this intermediary role was speaking on behalf of the sick person if their illness had damaged their ability to speak. Emma, whose mother had Motor Neurone Disease, said that being her mother’s voice had been the hardest thing.
When the sick person was in hospital, carers visited frequently, some staying in the hospital or nearby. While much of the care in hospital was reported as good, some carers perceived that aspects of hospital care had sometimes been neglected (see Care in hospitals, hospices and care homes’) and they asked for things to be done for their friend or relative or did them themselves. Common areas of neglect were washing, feeding and toileting. After Susan’s mother had been in hospital for several weeks without having a bath, Susan washed her herself. Some people struggled to get the right level of pain relief for their friend or relative, and Georgina said it took three days to obtain some barrier cream from another part of the hospital for her mother’s bedsores. Saba had to ask a nurse to change her mother’s soiled incontinence pad.
Hospital visits from the carer served to provide comfort and moral support as well as practical support, as did accompanying the patient to outpatient appointments. Some carers said how important they felt it was just to spend time with their sick friend or relative to keep their spirits up or bolster their confidence and provide companionship or reassurance. For instance, Janet said that she visited her partner Chris every day in hospital ‘to take her things that she might want, to give her comfort, to give her solidarity, to show that I really cared about how she was feeling’. Val said she used to read to her husband. Heather said her husband felt lonely when she wasn’t with him. Sue’s father had dementia and she spent one evening playing card games and listening to old songs with him to stimulate his mind. Katie spent a lot of time with her sister-in-law in her bedroom to give her companionship and reassurance. Where possible, some carers would take their sick friend or relative out of their usual environment for a change of scene to boost their spirits.
Other things that carers did included keeping the household running - particularly challenging for those who had two households to look after – including all the housework, shopping, gardening and coordinating visits from friends and family. Katie looked after her sick sister-in-law’s daughter as well as her own children. Poppy said she became her father’s ‘diary manager’. Emma walked her mother’s dogs; she also took on the unexpected role of looking after her mother’s live-in care workers, most of whom were young foreigners who had no independent means of transport. She found herself doing all their shopping and supported them emotionally when they had personal problems.

​Last reviewed July 2014.

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