Wendy Mitchell had been working for more than 20 years in NHS ward administration when, at the age of 57, she tripped and fell while out running in her adopted home of York. After falling again twice in relatively quick succession, Helen realises that her brain and her legs “aren’t talking to each other” and reluctantly concludes that her running days are over. She tells her GP that there are also days when she struggles to recall names and faces as well as she used to. After a series of tests, she is diagnosed as having suffered a mild stroke and is signed off work for eight weeks.
When she goes back to work three months later, Helen initially struggles to cope, but her vast experience gradually enables her to get back into the swing of things. Over the following few months, though, she often feels as though her head is half full of cotton wool and when she gets into work one morning, a colleague notices she is slurring her words and sends her home.
Eventually these symptoms prompt her to go back to her doctor who refers her to a neurologist, then a psychologist. She tells the psychologist about how she tries to keep on top of her days with a mounting pile of Post-it notes. More worryingly, at the end of the interview, she is unable to remember the three random words given to her at the beginning of the session. Eventually after further tests and investigations, she is diagnosed in 2014 with younger age dementia at the age of 58.
Despite Wendy’s understandable anxiety about her episodes of confusion, she is offered both support and encouragement by the psychologist, who tells her: “Don’t panic. There may come times when you become disoriented, the fog will descend and your surroundings will become unfamiliar, but the most important thing to remember is not to panic, give the fog time to pass, let the world become clear again and it will.”
It is these words of encouragement above all that give Wendy the resolution to continue living as normal a life as possible. What makes her story so remarkable and so inspirational is her determination to act as both witness and documenter of her own symptoms, not just so she can cope better herself, but also so she can share her experiences with – and offer her support to – others wrestling with a similar diagnosis.
Among the symptoms Wendy notices along the way are:
- Struggling to follow the plot when watching TV detective stories
- A heightened sense of hearing, which makes the sound of police and ambulance sirens – and even the sound of babies crying – almost painful
- Difficulty in following recipes she has made without a second thought all her life.
- A compulsion to keep buying the same items time and again (in Wendy’s case cheese graters!)
- A tendency to keep wearing the same clothes day after day, caused by confusion as to the whereabouts of her other clothes.
- A gradual loss of her sense of taste and a diminishing pleasure in food itself.
Even though she worked for many years in the NHS, Wendy is highly critical of what she considers to be the grossly inadequate support offered by health professionals to those living with dementia. When given her diagnosis of Alzheimer’s on 31st July, 2014, Wendy recounts that all the psychologist said as she left her office was: “Good luck.” and comments: “I won’t see her again, because there is no follow-up after diagnosis. There’s nothing they can do.” More than six months later, having been unceremoniously pushed towards early retirement, Wendy is still waiting for an appointment at an NHS Memory Clinic. As she writes: “… I feel broken and abandoned, discarded by an NHS that I have worked in for twenty years.”
Determined not to let her life be taken away from her prematurely by dementia, Wendy turns for help to the voluntary sector. A quick internet search leads her to the Alzheimer’s Society website and within a few days an array of useful information leaflets has arrived in the post. Wendy decides to start writing a regular dementia blog, Which Me Am I Today? which gives her the opportunity to share not just her own experiences, but also what she has learned from her research.
Recognising her passion and commitment, the Alzheimer’s Society asks her to help them raise awareness of dementia in Yorkshire, a role Wendy gladly accepts. Within a few days she is summoned to London to receive media training. After several months of tireless ambassadorial work for the Society, Wendy receives an invitation, along with two other people living with young onset dementia, to record a video comprising snippets from her daily life for the BBC’s Victoria Derbyshire TV Show. This is to be broadcast to coincide with the release of the Hollywood film about young onset dementia, Still Alice, starring Gillian Anderson. Much to her surprise and delight she is invited to the film’s premiere at the Curzon, Mayfair, where she is introduced to Gillian Anderson and the two enjoy a memorable conversation.
Wendy does not share this story out of boastfulness, but because she wants to convince the wider world that a diagnosis of dementia does not lead to a sudden and irretrievable loss of lucidity. As she tells another member of the Alzheimer’s Society’ Research Network at a meeting at their Head Office in London: “Dementia has to start somewhere. There is a beginning, as well as a middle and an end, and I’m someone at the beginning.”
Wendy’s story is an inspiring example of how it is possible for people to live well with dementia. In the years following her diagnosis, Wendy becomes a tireless campaigner for better dementia care, contributing to Innovations in Dementia, York Minds and Voices, and advising on the BBC TV series Casualty and the film Still Alice. She raises funds for Dementia UK through annual challenges, including skydiving, firewalking, and wing-walking and she even takes up wildlife photography. But her most lasting legacy will undoubtedly be the three ground-breaking books she has written about dementia, this one being the first.
An extremely worthwhile read, especially for anyone with a family member who has been diagnosed with young onset dementia.