My life as a carer

Looking after a relative with Alzheimer’s disease both opened Andrea Gillies’ eyes to the demands of the role and changed her as a person. She describes how she immortalised her experience in ‘Keeper’, winner of the inaugural Wellcome Trust Book Prize.

The role of carer – of ‘keeper’ – of the ill is often a faceless, thankless one. At times it is even an obligatory one, owing to familial ties. In fact, three quarters of an estimated 6 million carers in the UK are caring for a partner, parent or child with a disability, according to a survey in 2006 by the Princess Royal Trust for Carers.

Andrea Gillies was one of those carers drafted in by a family member’s illness, when she and her husband Chris promised his parents Morris and Nancy that they would look after them until the end.

“We had no idea what we were taking on,” says Andrea of her family’s decision to take on her mother-in-law’s care full-time. “We didn’t know much about Alzheimer’s disease, other than that it robs people of their memories and a vague idea that it could make them irrational and delusional in the end.”
An unexpected journey

A writer and journalist by trade, Andrea’s first jobs were in publicity before becoming a drinks writer and editor for years. With no medical or care-giving background other than “having a keen interest in my own pregnancies” and being a mother of three to Millie, 19, Caitlin, 17, and Jack, 13, she took an extended work hiatus to raise her children. It wasn’t until her experience of caring for Nancy that she resorted journal writing and researching dementia as a “cathartic channel for coping,” she says. Those journals would become ‘Keeper’, the book that would go on to win the Wellcome Trust Book Prize.

Instead of helping with straightforward issues, Andrea found that coping with the reality of day-to-day life of someone suffering from Alzheimer’s was quite different, and had a knock-on effect on the health of those around her, including Andrea herself.

“At that early stage, I didn’t understand that dementia robs people of the ability to make those trivial sequential steps that make life possible as an independent being. It hadn’t occurred to me that I would have to dress her, bathe her, cut up her food and spoon it in to her, get her on and off the loo, and that I was to be, in sense, a mother again,” she says.

As Nancy’s health declined, Andrea struggled too: “I was all at sea, making it up as I went along, and realised what an amateur I was.” Depression sunk in, as it does for many carers: the Princess Royal Trust for Carers survey of carers revealed 56 per cent of respondents said they felt depressed in their role. But Andrea didn’t seek help for it: “I would have been embarrassed to admit to it. I felt acutely that I was failing.”

“I began to empathise with Nancy so much that I felt as if I were undergoing a sort of parallel disaster, and that my own mental powers were dimming. This, I discovered later, is quite a common experience that is often called caregiver’s dementia.”

Her journal was an outlet for these feelings, ones she didn’t want to lay on her family. The philosophy of dementia became a keen interest, one she calls “obsessive”: “I started reading and making notes on Alzheimer’s, how it works and how it has been seen to affect people. And those notes became part of the finished book, interleaving the personal and often quite grim bits with some hard science and philosophical speculation.”

This blend of science with the personal is one of the reasons that the judges awarded her the prize; Jo Brand, chair of the Book Prize and a former psychiatric nurse, said that ‘Keeper’ was “the perfect fusion of narrative with enough memorable science not to choke you.”

Memorable lessons

Andrea’s experience as a 24 hour a day, seven day a week caregiver came to an end when Nancy started becoming aggressive towards the children, and the social work department found Nancy a place in a care home. But her interest in dementia is far from finished.

Five years on, and with an award-winning book to her name, she says she feels like a completely different person. “I have a stronger sense of what a privilege it is to be possessed of a healthy brain,” she says. “Our personalities are physical, biological things, and the truth is that they are incredibly fragile.”

While she doesn’t consider herself an activist for the cause, she is always happy to speak up if she’s asked to because of ‘Keeper’. She believes the National Dementia Strategy is “deeply misguided” and is disappointed with the media for considering dementia a “niche” subject, noting that not one national newspaper has yet reviewed ‘Keeper’. “It’s not a problem that’s going to go away, ” she points out, quite rightly: there are an estimated 30 million people worldwide suffering from dementia, a figure which is expected to rise to more than 100 million by 2050, according to Alzheimer’s Disease International.

Despite declining the role of activist, it’s clear she still thinks deeply on the topic. She’s currently working on a novel called ‘Sanctuary Wood’, one she says was originally conceived as being as different from ‘Keeper’ as possible. “But it has grown into a book that’s concerned with memory and identity and self and soul. I don’t seem to be able to get away from these ideas.”