Why caring for carers, as well as patients, is so important

by Claire O'Neill Patients and Families Involvement Development Manager Photo of Claire O'Neill

Three in five people will become carers at some point in their lives. In most cases this will be because someone they love is ill. A quarter of carers are looking after their spouse or partner.

We know how incredibly difficult and stressful this can be, which is why our nurses offer emotional support, guidance and reassurance to we try to offer support to carers, as well as caring for patients.

Late-night support For Kate Brewis, whose mum received care from a Marie Curie Nurse in the last hours of her life, being able to speak to someone about her situation made a huge difference. “I can only describe the nurse who looked after Mum as an angel,” she says. “I stayed up talking to her until 3am because I really needed her support as well.” That’s why Kate has joined our Expert Voices group. This group of carers give us hugely valuable feedback by sharing their experiences of looking after someone who is terminally ill.

Improving care They help us make sure patients and carers are the ones guiding how our services evolve and that we’re constantly improving the care we offer to people living with terminal illnesses and their families. “I want to try and help make a difference so everyone gets the kind of support we got at the end of Mum’s life,” says Kate. We’re also developing services specifically designed to support carers. For example, our Caring for Carers project launched last month in Wales. It will develop and deliver a series of free, practical workshops and information sessions to help carers across Wales.

‘Nothing prepares you’ In some instances, Marie Curie may be called in because the carer in particular needs help. This was true for Brian Andrews, another member of the Expert Voices group. His wife Gillian was diagnosed with acute myeloid leukaemia and given eight weeks to live. In the end, Gillian had just 26 days. “When you’ve been with someone for 52 years, that isn’t long enough,” says Brian. “I was in a terrible state. I hadn’t slept for a number of days, so the nurse was there for me as well as my wife. When Gillian died, the nurse looked after me until my family arrived and made sure that I was aware of everything I needed to do with the doctors and undertakers. It was just incredible.” “Nothing prepares you for caring for someone who is dying. But Marie Curie treats the patient and carer as one unit – they watch, they listen and they look after whoever needs looking after.” Read more about our support for carers Read more about the Caring for Carers project in Wales