Caring for someone with a terminal illness

Professional care at home

Many people choose to care for their relative or friend at home for as long as possible. There are a range of sources of support which can make it easier for the person to stay at home and systems set up to provide the necessary medical treatment that the person needs.
Care from health professionals
Some people received nursing care at home from district nurses who are provided by the NHS. The carers presented a varied picture of the quality of care received from district nurses, with many people being very happy with the care and support they received and others being disappointed and in some cases appalled.
The main role of the district nurse was to provide medical care such as changing dressings, inserting and checking catheters and syringe drivers, providing continence pads and taking blood samples. Some people found that district nurses could just be limited to providing medical care and because they were short of time they could seem abrupt or impatient. Many, however, felt that their district nurse also provided a great deal of emotional support. Sarah was impressed by the district nurse who had visited regularly at the end of her mother’s life.
GPs had also been a great support to some people, helping to signpost them to sources of support and taking an interest in the carer’s wellbeing. Sarah’s GP reassured her that she had taken on a lot and said she must look after herself and look after her own health and wellbeing.
Whilst most people found that their GP had been willing to visit at home, a few had felt frustrated when their GP had been reluctant to do a home visit. Jane had trouble persuading an out of hours GP to visit her husband when he had severe breathing problems and was not well enough to leave their home.
Medical care could also be provided by different specialist nurses depending on the person’s condition or the symptoms of their terminal illness. These included respiratory nurses for people with breathing difficulties, who could arrange for the provision of oxygen or in some cases assisted ventilation (see Home adaptations, Equipment supply and transport for more on discussion of respiratory equipment), and nurses who could advise on continence issues and insert catheters. People with Motor Neurone Disease were sometimes seen by a specialist neurological nurse and people with cancer or another terminal condition sometimes had support from a Marie Curie nurse or a Macmillan nurse. These nurses were also highly valued by carers for their wide ranging advice and support including assistance with getting benefits, advice on hospice care, advice on getting equipment and assistance with getting regular pain medication administered when required. People often felt that these nurses cared as much for the carer as they did for the person who was terminally ill.
Other health professionals were sometime involved in care provided at home, including physiotherapists, speech therapists, optometrists and podiatrists. All these professionals could play important roles in easing the symptoms of the person who was dying, for example keeping people mobile or helping them to communicate if their speech was affected. Some, however, felt that their support came too late or was not frequent enough to be useful.
At the end of life some people also had input from a palliative care nurse or a hospice at home service who could arrange end of life care at home, including administering pain relief and sedatives.  
Care from professional care workers
Friends or relatives of terminally ill people who are providing care at home for the sick person can, if they wish, get help with caring tasks from professional care workers. This can be provided by social services free of charge for those on lower incomes with limited savings, or obtained through private care agencies or self-employed care workers can be hired directly. Care that people got from professional care workers included help for short periods each day with getting their relative dressed and washed and sometimes helping them with going to the toilet. In some cases household chores such as preparing meals and cleaning was also provided, and some people had one or more live-in care workers. While people mostly welcomed this help and were able to accommodate the change, others saw this care as being intrusive of their personal space.
Finding the right type of care worker was important, particularly finding an experienced one who would respect the carer’s and family’s usual routines, and having good continuity, rather than different care workers all the time.
Finding someone who could deal with personal care issues in a dignified and respectful way was important. This sometimes meant finding a care worker who was the same gender as the sick person. Heather’s sick husband liked her to stay in the room when the care workers were helping him and got upset when they asked her to leave.
The quality of care could vary hugely; many people had been extremely happy with the care workers whilst others had struggled to find ones that were reliable and had to keep trying different sources.
One of the most common complaints was care workers turning up late. Whilst this did not always present problems, it could sometimes mean that the sick person was left in bed or had not had their incontinence pads changed; it could also make it difficult for the family carers to plan any respite time. Peter (Interview 33), who cared for his young daughter, felt that the professional care workers were not always trained to look after a younger person.
Several people built up strong relationships with their professional care workers and said that they had been very emotional when the person died and had sometimes attended the funeral.
Having professional care workers coming in could give the family carer some respite time. A carer’s centre helped provide Heather with a care worker who had been an RAF nurse, whom she felt confident leaving her husband with while she went to the gym.

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Last reviewed December 2017.


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