'Dear Alzheimer's the hangover you deliver won't last', writes ex-headteacher in dementia diary

Keith Oliver was a head teacher managing a 460-pupil school, advising schools across Canterbury and studying for a master’s degree in education… but that all had to stop after his diagnosis of Alzheimer’s - which he likens to a bad hangover he must overcome.

Feels like ‘the biggest booze cruise imaginable’

Keith Oliver‘s latest book ‘Dear Alzheimer’s – A Diary of Living with Dementia’, reveals an intriguing memoir that is very far from a love letter to the ‘dark beast that dwells in my brain’.

He says there is nothing ‘dear’ about Alzheimer’s and calls his diary entries an ‘ironic and sarcastic’ nod to the disease.

In 2010, the year of his diagnosis and first diary entry, he wrote: ‘Dear Alzheimer’s, I realised that you have been watching me for some time.

'I am not going to say there is anything positive about meeting you because there isn’t. Why don’t you have the courage to talk with me about why it is on the days you seek to spoil my life I sway, wobble and struggle to concentrate, like I’ve been on the biggest booze cruise imaginable?

‘The hangover you deliver won’t last. These are the earliest days in our relationship and I hope to win more exchanges than I lose with you.’

What first began as a few falls and feelings of tiredness caused the headteacher concern. When he lost his balance, he described his legs as feeling ‘like a ship in rough seas’. A trip to the GP ruled out what he thought was an ear infection.

More tests and scans also ruled out a tumour. Mr Oliver was later diagnosed with young onset dementia at the age of 55 – ending his 35-year teaching career.

“I realise that I know very little about dementia other than the fact that five weeks ago I would have believed it to be an old person’s disease; I never realised it could possibly affect someone of my age’.

The impact of dementia became evident in his life at school, as he tried to retain and retrieve information. He wrote: ‘I spent the last couple of days reading through 460 school reports.

'It’s an incredibly difficult task because they are about three or four pages long, and by the time I get to the end of a report, I have to reread certain sections before I make a comment because I cannot remember now what I’ve read.’

Mr Oliver’s conversations with staff also indicated dementia’s presence. ‘I have had conversations with John the caretaker around me not remembering the code for the alarm to the school.

‘I told the staff about my health concerns. But I didn’t tell them what I was dealing with because I didn’t know at this stage’.

In an effort to describe the effect of dementia he notes: ‘There are some days which I would liken life to being in a fog that descends. It’s an unusual feeling. Today, developed into one of those. It became a ‘foggy day’.

At the time, while managing an annual school budget of over a million pounds, he notes in his book how he ‘had another fall, followed at the end of work with a finance meeting which I have little recall of ‘.

Mr Oliver's wife Rosemary began collecting him from the school at lunchtimes up to three times a week to go to a car park so that he could have a nap in the car.

After completing the school year, he was a few days into the new academic year, when he detailed his sense that ‘things are slipping’.

An emergency visit to the GP that day, prompted a “Really, you cannot continue like this”, response from his doctor. The GP immediately signed him off for two months, then six, and told him to ”start the ball rolling” on early retirement.

Banning the words 'can't', 'sufferer', 'but' and 'regret'

On 1 April 2011, Mr Oliver took early retirement from Blean Primary School.

His diary entry describes how days watching daytime TV 'is really so boring'. 'When I summon enthusiasm to watch a film I have to make notes in an exercise book as to what the film is called and what it is about because otherwise I have no recall of watching it.’

At the end of 2011, he tells his Dear Alzheimer's: ‘You tried to tempt me with the falsehood that retirement would be cosy, but warning signs about boredom flashed in front of me.

'I know you encourage apathy, and then use this as a weapon to bring about decline. I will contest this with you through remaining busy, active, engaged and involved in projects and challenges.’

In 2012, he writes: ‘The busier I become, the more able I feel to keep your creeping presence at bay.'

Referring to his medication galantamine, he says: ‘You know my aversion to pharmacological treatments but taking a tablet produced from the sap of daffodils grown at altitude in the Welsh hills fills me with pleasure.

'The daffodil not only heralds spring but resistance to your cold clutches.’

By 2013, he had already decided to ban four words from his vocabulary ‘can’t’, ‘sufferer’, ‘but’ and ‘regret’. With that in mind, Mr Oliver and his wife Rosemary flew for a six-week holiday to Australia that year. He noted: ‘To think if we had taken the neurologist’s advice three years ago, we would have missed out on five more trips to our beloved Oz.’

But this hopefulness is challenged by the efforts of Alzheimer’s to rob him of it. He wrote to his silent penpal in 2014: ‘What has alarmed me is that you have recruited your toxic cousin depression into your armoury.

'To combat this, I sense the need for those around me, that is friends and family, to be as positive as possible.’

Actress Carey Mulligan praises Keith's 'steely determination'

Keith Oliver was invited to Geneva to speak at the United Nations addressing the Convention on the Rights of Persons with Disabilities (CRPD) about what is needed to ensure the rights of people with dementia are upheld and not ‘trampled’ .

He tells his ‘Dear Alzheimer’s’ that ‘when I get stressed and muddled’ … ‘you wrest the words from my tongue or cause me to ‘jump in’ and interrupt for fear of you whisking away what I wish to say.’

Mr Oliver has also met with actress Carey Mulligan, the Alzheimer’s Society’s UK global dementia friends ambassador.

The actress wrote in the foreward of his new book: 'I’ve had the privilege of meeting Keith on a number of occasions. I’ve always been struck by his eloquence, compassion and quiet yet steely determination in tackling his diagnosis and uniting others against dementia.

'Reading Keith’s words highlights just how active and engaged he is. Keith is an inspiration certainly to me and I think should be to us all.'

Busy enjoying retirement with his wife Rosemary, catching up with friends, his children, grandchildren and giving talks across the UK to academics, health professionals and the general public, Mr Oliver is clear that his message to Alzheimer’s is: ‘You will never define me.’

*Half of all royalties gained from his third book 'Dear Alzheimer’s', will be donated to the charity Young Dementia UK. To purchase the book, visit shop.alzheimers.org.uk