Trust worker Rebecca O’Keeffe has drawn on the tragic loss of her mother to early-onset Alzheimer’s to pen a touching book to help children understand the grief around the condition.
Rebecca, who works for Tees, Esk and Wear Valleys NHS Foundation Trust, helped care for her mother Julie when she was diagnosed with the disease at just 51.
“My eldest child was just a baby at the time,” she said. “I found it really challenging to explain, as the illness progressed, why grandma didn’t recognise him, or why she acted in a certain way.
“When my youngest was born six years later, my mam’s illness had significantly deteriorated. However, we still talked about his grandma, to ensure he knew who she was.”
Hoping to help others
The idea for the book came from the difficulties Rebecca experienced when talking about Alzheimer’s – as well as the grief around the condition – with her children.
“As an adult, trying to understand the illness is really difficult, so I wanted to help other families have these difficult and emotive conversations,” she said.
“I wanted to help families explain the changes children may see, hear and feel and encourage new ways of enjoying a changing relationship as the illness progresses.”
Small changes provided first warning
Rebecca’s mother Julie had been working in admin and logistics for a transport firm, a job which required huge attention to detail, when she first started showing signs of Alzheimer’s.
It was small things at first, like losing her keys or forgetting key dates. Then, Julie’s co-ordination became impacted, and she found everyday tasks like putting on a coat difficult.
“My mam was such a caring, funny, lovely lady – often the life and soul of a get-together,” said Rebecca, a service manager for TEWV’s specialist adult mental health services.
“One of the first warning signs we had was when she struggled to understand the 24-hour clock while doing time sheets for work – a task she carried out with ease prior to diagnosis.”
Julie, from Spennymoor, was 49 when her family started to notice she was acting out of character – and, at first, she was treated for depression and the menopause.
Two years later she was diagnosed with Alzheimer’s.
“The family was devastated when the diagnosis was confirmed,” said Rebecca. “We knew something was wrong but were shocked because of her age. It just seemed so young.”
Julie stayed at home for the first two years after her diagnosis, looked after by Rebecca and her siblings Iain and Hayley – as well as her parents, carers and TEWV health staff.
The time came, however, when she needed to be admitted to Auckland Park Hospital in Bishop Auckland for an in-depth assessment and treatment.
Julie’s final few years were spent in a nursing home, where she was cared for by “fantastic staff” as her illness progressed. She passed away last year aged 63.
“With mam, Alzheimer’s was not just about memory loss, it was much more – like personality changes and the psychological and emotional impact on her and the family,” said Rebecca.
“It’s such a difficult situation. A loved one may act very out of character – they may get angry, frustrated, confused, when previously these behaviours have never been seen.
“It can be really upsetting for children and adults to see and understand. The idea for the book came to me because I wanted to share our family’s experience to support others.”
Hoping to help
Rebecca, who lives near Durham, started writing her book – Loved Dearly – in the weeks after her mother’s death, working closely with Child Bereavement UK on the project.
The book, which is written from a child’s perspective, provides insights into the potential challenges around Alzheimer’s – including memory difficulties and behavioural changes.
“It felt like therapy to write it,” she said. “We are good at giving other people advice, but not always good at following it. It really helped me to write everything down.
“I think mam would be over the moon with the book. She was always helping others, and I think she’d like that her story will help other families.”
- Rebecca’s book Loved Dearly is available to buy via Amazon. See here: Loved Dearly : O’Keeffe, Rebecca, Cerri, Claudio: Amazon.co.uk: Books