Mental health and end of life: the cost of caring

Caring can take its toll, mentally and physically. We explore the potential psychological impact of being a carer and meet Helen, who shares her experience of looking after her husband through his terminal illness.

It’s well known that living with a terminal illness is associated with an increased risk of clinical depression. It’s often treatable and the good news is that there’s lots of information and support available, including from our own information and support line (0800 090 2309).

Less frequently discussed is the fact that caring for people living with a terminal illness can also put you at risk. Indeed, a wealth of research has highlighted the potentially serious psychological impact that caring can have on one’s health.

Added challenges

Meet Helen Counsell. Helen lives in Kent. She worked previously as a registered nurse, but is now a full-time mum to her two boys, Luis and David. In 2008, Helen’s husband, Chris, was diagnosed with a brain tumour. He died in September 2009. Chris had problems with depression and anxiety as a direct result of his tumour, which brought added challenges for the couple.

“Before he was diagnosed I started noticing changes in Chris’ personality. He was suffering from frequent headaches, not sleeping well, having difficulty concentrating, memory problems. The worst part was thinking that the changes were something to do with our relationship,” says Helen. “He’d seen his GP and was being treated for stress and depression. He was also having sessions with a counsellor to tackle the difficulty he had controlling his temper.”

Helen cared for her husband whilst raising their two children (the youngest was born just seven months before Chris died). Even with her training as a nurse, and support from a Marie Curie Nurse who came two nights a week, she found it very difficult. “I did not want to leave Chris alone, he suffered from anxiety and could be unsteady on his feet, even having some falls. But I wanted to look after him at home.”

Increased use of antidepressants

A study, part-funded by Marie Curie, illustrates the impact caring can have on your wellbeing. The study looked at over 13,000 carers who co-habited with loved ones who had died from cancer, COPD or dementia.

It found an increase in prescriptions of antidepressants, sleeping tablets and anxiety medications one year after bereavement. This chimes with previous research that found that a significant proportion of carers develop depression or anxiety following bereavement. Worryingly, only 6.9% of the cohabitees were identified as carers by their GPs.

“We found that many partners of people with terminal illnesses don’t identify as a carer but rather a husband or wife,” says Dr Liz Sampson from the Marie Curie Palliative Care Research Department at University College London, who led the research. “This means they often miss out on the support they need.

“Given that this population are often isolated in the community, it is sad to observe the increased levels of antidepressants being prescribed to manage their distress.”

Professor Bill Noble, Marie Curie Medical Director, said: “It’s clear from the increased antidepressant use that caring for someone with a terminal illness can impact heavily on people’s wellbeing. It is, therefore, important not only to recognise the contribution these carers make but also the continued burden they carry in bereavement."

Costs of caring

Helen agrees that the costs of caring can be quite high and that people need more support. “I became very physically depressed and run down,” she recalls. She was eventually admitted to hospital herself – with meningitis, encephalitis and septicaemia. The staff wanted to know why she was so run down, she says. “I believe it was years of poor sleep, diet, depression and fatigue.”

After complicated surgery, she made a full recovery. “Fortunately, I’ve turned the corner and no longer suffer from depression. Although I do have down times. I’m aware when I need a boost to stay positive,” she says.

Helen talks about other carers she knows suffering problems with anxiety and stress. “Losing the person you care for increases rather than reduces [anxiety and stress]…but there is always light at the end of it all.”

Caring for a loved one living with a terminal illness can be an incredibly challenging experience. Find out more about looking after your own needs and the support that is available.