Caring for someone with a terminal illness

Support for the carer

Support from family and friends can be crucial for someone who is caring for a patient with a terminal illness; but accepting help was not easy for some carers. Anne has had to learn to accept help from family, friends and neighbours. Before her husband went into a nursing home Anne had never lived alone and she finds some aspects of managing the home difficult.
 
One of Roger’s sons moved in to help with care when he realised that Luise was deteriorating. John and Joyce’s family had always been close so John felt very supported throughout Joyce’s illness by their four children and ten grandchildren. Keith’s three sons took it in turns to stay while he cared for his wife. Julie had friends who did shopping for her occasionally. Several carers said they had been able to talk to friends about their situation, although Brian was careful not to talk about it too much in case friends got fed up. Friends reacted in different ways, some being more able to provide support than others, and Peter (Interview 06) had been disappointed that so few visited his sick friend.
 
While family and friends may offer to help with care there may be some aspects of care which prove difficult or sensitive. Lynne’s daughter helped Lynne care for her mother but didn’t want to do the more intimate tasks. Jacqui had a care worker to do all the personal care her husband Terry needed when Terry’s younger brother stayed while Jacqui had a holiday. Sarah’s brother would occasionally stay to look after their parents while Sarah had a holiday. Maggie organised a network of friends to sit with her husband so she could continue working.
Being a carer can limit social activities and put pressure on relationships. Emma recalled how she felt ‘very removed’ from her colleagues when she visited the school where she used to work. Susan feels lucky that her husband has been so understanding and supportive while she has cared for her parents. Ruth’s husband has also been supportive and helped with her mother’s care. Sometimes visiting relatives can cause upset' Cassie remembers how frustrating and upsetting it was when her brother and sister would visit and criticise how she and her mum were caring for her dad.
 
Some family members live a long way away and while some travelled long distances to help on a regular basis, others found it difficult to offer frequent support. Saba found it stressful trying to help care for her mother as she had to commute from her work in Germany. Her mother’s care worker only visited for an hour one day a week so her father had to manage with whatever support she and her brothers could give. Una’s son lives in the United States but has been able to visit and help with practical things around the home; he built a deck so Bill can have level access to the garden.
 
Passing information around the family can be time consuming. Lesley’s sister-in-law had taken over the job of keeping everyone in the family informed of David’s condition. Peter (Interview 33) didn’t want to be constantly on the telephone, so set up an email group to keep friends informed about his daughter’s condition.
 
Some carers found attending support groups helpful because it allowed them to meet others in a similar position. Brian attended cancer support group meetings that his sick wife chaired, and realised that he wasn’t alone. He was always surprised when people asked how he was, as he doesn’t expect people to worry about the carer. Sarah enjoyed meeting others at a carers support group and attended the occasional manicure or head massage sessions they organised. Tricia was surprised when the council sent her vouchers for various ‘pamper’ sessions because she was a carer. Lesley feels the support of Myeloma UK has been invaluable; she phones them with queries regarding her husband’s treatments.
Professionals were also a support to carers. Sue’s GP phoned and offered to call round after surgery any time Sue was worried. Lesley describes her GPs as ‘absolutely magnificent’. Whenever she rings up on her husband’s behalf they always ask how she is, which she feels is very important. Emma recalls early arguments with her mum’s GP, as she expected him to know more about Motor Neurone Disease than she did, but as time went on their relationship improved and they could discuss her mother’s care constructively. Anne was glad that when she and her husband moved to be closer to their daughter they were able to register with a GP who had experience of her husband’s rare condition.
 
Carers often accompany patients to hospital appointments. Their experiences of interactions with hospital staff varied with some carers feeling valued and included in all the discussions, while others felt undervalued and ignored.
 
Janet was offered the opportunity to talk to the Macmillan nurse. Before her mother went into the Macmillan unit Ruth felt she had no one to talk to, but there she found the staff very supportive. Community palliative care nurses, specialist nurses and Macmillan nurses can provide support and advice for carers as well as their patients.
District nurses may be part of the patient’s home-care package. They too can offer support and advice to carers, and help to organise specialist equipment or services to help them. Providing care in the home can be isolating for the carer so regular nurses’ visits can ease the sense of isolation or loneliness. Some carers whose sick friend or relative attended a hospice found it helpful to talk to staff about their feelings or concerns. Katie found the hospice staff were good at listening and allowed her talk things through. Some carers find that counselling can be supportive. Simon used a free counselling service at the hospital.

​Last reviewed July 2014.

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