Towards the end of her career, and at the beginning of mine, she told me about a patient she once cared for. The lady in question had no family, at least no-one had visited her for years. Despite efforts to contact any remaining family through the local paper and council archives, the trail soon ran cold as she couldn’t find anyone.
The hospital paperwork was sparse and yellowed from years of storage; don’t forget this was the 1970s and people stayed in hospitals for years in those days. However, her belongings included a battered old green leatherette handbag, cracked from years of use, in which was housed an enticing relic of her past, a black and white photograph of her in younger days, maybe 40s, full of life and laughingly looking up at a younger man who was holding a child. Her son? Her grandchild? Who knows? Sadly, the lady died.
My mother as ward sister insisted on holding a magnificent funeral out of the health authority funds and pension pot money that had accumulated in this lady’s name over the years. She arranged for a headstone and under her name decided upon the inscription, ‘Known to God’.
The absence of any mention of loved ones poignantly illustrated the futility of the situation, the tragic waste of love, life and lost happiness.
I sometimes visit the grave as it is nearby to my mother’s place of rest and place a flower there. A stranger remembering someone she never knew.
In sharp contrast to this tragic account is ‘NOT forgotten lives: Felixstowe 2017’. The book is a written record, produced for the 2017 Felixstowe Book Festival, which celebrates the lives of older people living locally in residential accommodation.
This slim volume is organised by an overview of what life story work is about, followed by photographs and accounts of the life stories of residents living in nursing and residential accommodation in Felixstowe. It concludes with a personal reflection from the co-editor, Bertie Wheen.
This local initiative takes this concept of providing person centred care a step further to undertake life story work which captures memories through conversations about people to facilitate a feeling of wellbeing and promote personhood by keeping them connected with their family, friends and communities. This concept crucial in dementia care as others are relied up to evoke memories and keep their stories alive.
As a nurse looking after older people in acute hospitals, I have always been grateful to relatives who have entrusted me with information which allows me to care for their loved one in a way that respects their individuality and preferences. It is good for me too because I am able to see a real person rather than the embodiment of a list of jobs to be completed, always a danger in today’s pressurised healthcare contexts. When caring for dying patients I am also able to offer them comfort by ensuring photos of loved ones or pets are within their line of vision, and when delivering hands on care I am able to talk to them about their family and friends and about things they enjoy.
I love to see photographs of people I care beside their hospital bed; perhaps confidently strolling down a sunny seafront arm in arm with a loved one, sporting a beautiful tea dress. Or maybe holding a chubby baby dressed in a hand knitted cardigan. How about a black and white wedding photograph from the 1940s? You can begin to imagine the wonderful possibilities for conversation and reminiscence about their past lives which can engage them and spark off many interesting snippets of stories about lives lived.
All this is not possible without access to patients’ stories.
This local initiative has lessons for us all. The underpinning ideology of life story work is crucial in providing a personalised service to older people with dementia who require care. Without it we are left adrift with no way of finding the person as memories become as faded as the photographs.
As my mother’s story so poignantly and tragically reminds us, our life stories are what makes us who we are, and as such, we should remind ourselves that life is precious, every single minute should be celebrated, and we should take every opportunity to remember each precious moment together.
Liz Charalambous is a nurse and PhD student. Interested in dementia, delirium prevention, and volunteers, she blogs and writes regularly for various nursing journals and tweets as @lizcharalambou