In a world first, a person living with Alzheimer’s Disease has written a memoir about what it’s really like living with the cognitive condition.
Wendy Mitchell was first diagnosed with early-onset Alzheimer’s when she was 58 years old. She had a successful career that spanned two decades, working for the NHS in the United Kingdom, and was shocked when she was first diagnosed.
Writing her story with Anna Wharton and sharing it on BBC Radio 4, Wendy opened up about her experience in a five-part series called Somebody I Used to Know.
In an audio clip narrated by Tessa Gallagher, Wendy explained that she began noticing a change in her body at the age of 56. The first sign was when she had a fall one day after her mind went completely blank. She booked an appointment with her GP to discuss the incident, but said he dismissed it as a symptom of old age.
“I want to tell him that I’m the person at work who knows the system for rostering nursing shifts inside out,” she said of the appointment. “I’m the one my colleagues nickname ‘The Guru’ because my recall is so sharp, because I can problem-solve in a second. But he’s tidying papers on his desk and I sense that this is the end of the appointment.”
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Months went by and Wendy sensed she was getting more confused. She took three more falls and described the feeling as “a head half-full of cotton wool”. Wendy began noticing she was struggling with the simplest of tasks and started slurring her words and being unable to hold her cutlery correctly at dinner. “It was clear that this was something much more serious than simply burning the candle at both ends,” she recalled.
Wendy ended up in hospital where doctors told her she’d had a stroke, which caused her to fall. She was ordered to take time off work and felt as though she didn’t have a purpose as she was cooped up inside for months. Two months later, she had an appointment with a neurologist, who then sent her to a clinical psychiatrist, to carry out more memory tests.
She explained another scenario where she became flustered while driving and ended up taking a wrong turn, even though she knew where she needed to travel. “It was like my brain and my body weren’t talking,” she recalled. And, over time, her job that was once effortless became a constant struggle.
Another meeting with a psychiatrist suggested that all the symptoms could be pointing to dementia, something that Wendy couldn’t quite comprehend when she researched the topic on YouTube. “The videos that appear onscreen and men and women at the ends of their lives,” she said. “Old and white haired. Blankness, written large across their every face. Confined to their hospital beds.” She didn’t believe the people she was seeing where anything like her.
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It was later confirmed that she was living with Alzheimer’s. “I know these words will change everything,” she said of her diagnosis. “They’ll change the life I know. They’ll steal the life I know. I’m 58 years old, and I’ve just been diagnosed with early onset Alzheimer’s .”
Four years on, Wendy still lives independently, but understands her condition will only worsen with time. She travels around the United Kingdom giving talks about her condition and trying to change the public’s view on dementia.
The full episodes can be played on BBC’s iPlayer Radio here.
What do you think? Do you think it’s important for people living with health conditions to detail their illness from their perspective?