Author’s book records the moving tales of those faced with the challenge of mental illness
LUCY Whitman’s mother, Elizabeth, led a happy and fulfilling life until, bit by bit, things began to change.
Her conversations became repetitive and characterised by anxiety and at times desperation. She did not know it then, but the woman who had known her the longest was sinking into a sea of dementia.
The slow-drip onset of the condition often catches families unaware and leaves them floundering on a steep learning curve.
Writer Lucy, with the help of the Camden Town-based charity For Dementia, has published an anthology of accounts from families who become carers in their own home.
“My mother had a long and happy life but the last two years were quite sad,” she said. “She was well aware that she was losing her grip and she became frightened. She felt she was inconsolable – and I couldn’t comfort her. We didn’t really know what to do.
“We found doctors and nurses didn’t know much about it and didn’t offer much support. It’s quite hard to speak to people about dementia – it is in some ways still considered taboo.”
Telling Tales About Dementia is split into three sub-sections: Living With Loss, Despatches from the Battlefield, and Letting Go.
“The point of the book is to firstly offer emotional support for family carers and to make them feel like they are not alone,” Lucy said. “One of the challenges is reducing the isolation. People have said the book is sad, but I think it is inspiring. The book is a collection of love stories that are heart-warming. There is some common ground: carers find it very tiring, exhausting, stressful and it is also frightening when somebody close to you no longer recognises you, cannot get themselves up or eat and swallow.
“What is the best way of dealing with a situation when someone is endlessly repeating the same conversation? When is it all right to take a break? Often, families don’t ask for help until it’s too late.”
Prime Minister Gordon Brown has come under fire over proposals to provide free home care for the most vulnerable elderly people. Currently, anyone with assets of more than £23,000 – including their house – have to pay for care themselves, whether at home or in residential housing. Free home care is only provided to people without savings or to those who cannot feed or wash themselves.
Lucy said: “People with dementia are currently regarded as in need of social care, rather than health care.
“If someone has, for example, cancer, they don’t have to pay to be looked after. In some cases, families are paying out huge amounts of money to fund care in their homes or in a care home.”
Some councils choose to fund free dementia specialists, known as “Admiral nurses”.
“These nurses provide lots of information and help to family carers in touch with others in their position,” Lucy explained. “Everyone should have one. Admiral nurses are funded in Westminster and Haringey but not Camden.”
The Camden Carers Centre has the £418,000 contract with Camden Council to provide advocacy, training, support and breaks for carers paid for by the Town Hall.
For more information contact For Dementia, based in Camden High Street, on 020 7874 7210.
• Telling Tales About Dementia: Experiences of Caring is available from Jessica Kingsley Publishers at £14.99.