Caring for someone with a terminal illness

Messages to other carers

People’s experiences of caring for someone with a terminal illness were collected at different points of the caring journey. A few people talked about their experiences when they were still in the thick of day-to-day caring duties, feeling very uncertain about what lay ahead. However, the majority of carers had completed their care-giving roles. Their partner, family member or friend who they had cared for had passed away several months, and in a few cases, several years, previously. They were able to look back on their caring experiences with the benefit of hindsight. We asked them what advice they would give to others who were about to become a carer or what they might do differently if they had their time again. One major piece of advice was to ask for help and to find out about what support might be available early on. Some carers found out what help was available by contacting a carers support charity (see the ‘Resources’ section).
With hindsight, several carers felt they had struggled on alone for too long before admitting that they needed extra support. This included both ‘hands on’ support to assist with the physical side of caring, but also emotional support and finding opportunities of respite for themselves (see How carers use and feel about respite time). Dick advised making use of the local hospice. While caring for his wife with Motor Neurone Disease he said, “When things got too much they stepped in and they were wonderful.”
 
Some felt it had been difficult to accept the help that was on offer, as this was bound up with feelings of personal defeat and ‘giving in’ to the illness. Others were more than ready to accept help, but it was not very easily forthcoming. The feeling of having to push their case discouraged some from seeking formal support until they had reached crisis point.
A few carers said that finding themselves in extreme situations had made them more able to ask for support and made them realise that others genuinely wanted to help. David, whose wife was diagnosed with pancreatic cancer, found it much easier to ask friends for help with childcare than he would have done before her illness.
 
Those who had cared for somebody over a longer period of time stressed the importance of maintaining their own health so they would continue to be able to support the sick person. They also realised that it was important to have a life outside caring, so they could ‘refuel’ their energy and then return to their caring role with a more positive mindset. Keeping in touch with the outside world was also important in preparing for the time after their relative or friend had died.
Several carers stressed the importance of a positive attitude and a sense of humour as assets of coping with often very draining and upsetting situations and developments (see also Ways of coping or finding solace).
Several carers described how once the initial shock of receiving a terminal diagnosis for their relative or friend had subsided, they had vowed to make the most of things while they could. Several people advised trying to accept that things would change, and for many, the sense of time being limited had brought them closer together and made the time they could spend together more special.
John (Interview 12), a father who cared for his son dying of acute leukemia, described the last few months they spent together as the closest they had ever been and advised others to “Tell people how much you love them as often as you can”.
 
Another major piece of advice was to be assertive when seeking out medical information and discussing treatment or care options. Receiving a terminal diagnosis may make it difficult to think straight. However, several carers cautioned against ‘burying your head in the sand’ and stressed the importance of asking questions of the medical team and making sure that the best treatment was being provided.
Those who cared for someone with a rare condition, such as Motor Neurone Disease or an unusual form of cancer, described how they at times would need to educate the medical experts and challenge ‘standard responses’. UK government policy recognises the expert knowledge of lay carers and aims to include them as key partners in planning and designing hospital discharge arrangements and individual care packages.
A few people found it difficult to provide advice to others, emphasising how every person’s needs are different. Theadora, who had nursed her mother with pancreatic cancer, described caring as “a tiring, hard and long journey”, and a woman who looked after her husband with Motor Neurone Disease advised “don’t try to do it alone”. Several others agreed but also said they felt grateful for having had the opportunity to care for a loved one.


Last reviewed July 2014.

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