Keith Oliver

Dear Alzheimer’s: Letters from a man living with dementia

Keith Oliver’s new book, ‘Dear Alzheimer’s’, is an intimate and empowering memoir of his experiences living with dementia. The book contains a series of letters addressed to dementia, written as his condition progresses each passing year. Read the first two letters here.

Keith’s story

Keith Oliver was 55 and the headteacher of a large primary school when he was diagnosed with Alzheimer’s disease.

Now in his 60s, Keith’s life has seen many changes, but he refuses to be defined by the condition. Although retired from teaching, he continues to stay busy through volunteering work and as an activist championing the voices of people living with dementia

Keith’s new book, ‘Dear Alzheimer’s: A Diary of Living with Dementia’ (Jessica Kingsley Publishers, April 2019), gives a moving account of his journey to live a full life after diagnosis. Each chapter concludes with a brief letter addressed ‘Dear Dementia’, based on notes taken from Keith’s diaries and journals.

We pick up Keith’s story in 2010, with his first letter written shortly after receiving a diagnosis.

'One door closes, one door opens':
Keith's letter to dementia in 2010

Dear Dementia,

I realised that you have been watching me for some time, sitting on my shoulder as my mother developed Alzheimer’s and you strove to rob us of her personality and her love. You failed with both, because even though eventually she did pass away you didn’t take her.

Having returned to school today from seeing the neurologist I recognised your presence within the room. I am not going to say there is anything positive about meeting you because there isn’t, and I hope our association is one which I can handle. I also recognise those early symptoms which I was able to dismiss, and I respect your tenacity in not giving up in your efforts to get the better of me. 

The neurologist’s words about Rosemary and me cancelling our holiday to Australia were, I know, fed to him by you. I hope you recognise my defiance in saying to both him and you, ‘We are going. Bugger you Dementia!’ I suspect that you may accompany us on our trip. I hope not, and I will certainly do my very best to leave you behind.

Why don’t you come out of the misty shadows where you lurk? Why don’t you have the courage to talk with me about why it is that 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 without the thirst-quenching pleasure or the delight of reaching a comfortable safe harbour. There again, the hangover that you deliver won’t last, and the sun, after a boozy hangover compounds the strife with you, brings relief, and always will do so.

I know these are the earliest of days in our relationship and I hope to win more exchanges than I lose with you over the coming years.

Your far from obedient servant,

Keith

Keith Oliver and the front cover of his book 'Dear Alzheimer's'

Author Keith Oliver and the cover of his book 'Dear Alzheimer's'

'Never truly yours':
Keith's letter to dementia in 2011

Dear Dementia,

It is now a year since my last letter to you, during which time we have had a number of encounters with each other. I sense you see this as a conflict; if so, some battles I have won, and in some you have gained an upper hand. But although your victories will leave a bitter taste, they will be short-lived.

You tried to tempt me with the falsehood that retirement would be cosy, but warning signals 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 I have enjoyed for some time alongside new ones.

Often you will hear people asking me, ‘What is it like to have dementia?’ You will know that I liken your influence to the weather, and when I am feeling well the sun shines brightly and you flee into the darkness; when you are most active the fog descends either in patches or as an impenetrable shroud. You will also have heard me say that on the foggy days, tomorrow will be better and the sun will reappear. The other image I use is of a picture which a hole punch has made holes in, sometimes few, sometimes many. If it’s the latter then the sheet is discarded and a new picture emerges to restore my confidence and help me move forward.

Paramount in my mind at this time is my desire to establish a new life which maintains what you are seeking to take from me, which is my identity, my personhood, my place in the world, my humanity. All of these at this time are well out of your reach, although I do sense you stretching out your grasping hands to wrench them from me. 

You have few allies and mine are growing in number. Unlike you, I am not alone, I have others helping me to surround myself with a protective shell.

Never truly yours,

Keith

‘Dear Alzheimer’s’ is available now

Copies of Keith Oliver’s ‘Dear Alzheimer’s: A Diary of Living with Dementia’ are available now in our shop. Buy it below or listen to a podcast with Keith about the book.

Buy it now Listen to podcast
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14 comments

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II was disgnostic with demetia over a year ago but I don't know too much about it, where can I get a good advise?

Hello Mrs Cooper,

I'm really sorry to hear about your diagnosis.

A good starting point for learning about dementia is our publication 'The Dementia Guide'. It's a free guide and covers most of the main topics, so you can turn to whichever sections are most relevant for you. It's available to download or you can order a copy in the post here: https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-…

Our shorter list of '5 things you should know about dementia' might also be interesting if you're looking to learn the basics: https://www.alzheimers.org.uk/about-dementia/five-things-you-should-kno…

You can also call our helpline for information, advice or emotional support on 0300 222 11 22. The opening hours and more information about the helpline is available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

Some people affected by dementia find it useful to talk to other people in similar situations. If that's something that interest you, it's worth taking a look at our online community Dementia Talking Point. You can browse the community or sign up for free here: https://forum.alzheimers.org.uk/

I hope this is a useful starting point. Please do get back in touch if you're looking for something more specific, and don't hesitate to call the helpline if you'd like support.

Best wishes,
--
Alzhemier's Society blog team

I don't know who to talk to, but I have a feeling that bottle or Brest fed is a contributor to dementia
Formulas of different or specific products start the process and diet continues it ,but I have no way to test my theory maybe you do

Thanks for getting in touch, Adam.
There has been a lot of research into women’s reproductive life and risk of dementia and some research suggests there could be a connection with exposure to the hormone oestrogen but results have been varied. Researchers are still trying to understand why women are at a greater risk of developing dementia than men.
We’ve had a look at the published research and there is limited research into breast feeding and risk of dementia but we will keep an eye on this area of research.

You can read more about why dementia is different for women here: https://www.alzheimers.org.uk/blog/why-dementia-different-women

Thanks
--
Alzheimer's Society research team

its been a two year journey but now we are at " Dementia Station" please alight here for, fear, anger, frustration, planning, tears, hurt, and all the negativity that lives here. Please don't pretend its anything good. However, once the diagnosis is out there and support rushes up to collect your baggage, you begin to see a bit of light on this dark day. It is what it is, now whilst we may have to stay here for a while lets not exactly enjoy it but lets see just what were made of eh? Keep your tears for the locked bathroom and tell everyone you meet, 2 Johns got dementia " and just watch them lean forward and say " don't worry, we will help". Don't ever say " its not fair" because life's not fair. Live in the day. After all who really wants to see into any of our futures?

Glad to hear you’re still getting involved. My very best wishes
Jane Roberts

Many thanks Jane. If you are the Jane I think you might be - retiree from kmpt then you are in the book!!

Very interesting Keith! I like the way you write this story. It’s in small chunks and fully understandable. The odd words I just look up 😉. Look forward to getting stuck into my copy.

I hope that the book gives some hope and realistic guidance to those who read it. Thank you.

Your story have really blown me away I wish u all the best,

Many thanks. At the launch of the book I was asked "who in the world would I most like to read the book?" My answer was " a person who is diagnosed tomorrow in the hope that it will give them some sense of hope and assurance that there is some support out there."

Hi Keith,

I came across your book today when looking at something else. I think you are very brave to have written your book on Alzheimer's and more importantly, your own story first hand. I get sad when I see people with this debilitating and memory loss condition and have experienced friends parents with this and seen what they and the sufferer go through. I wish I could wave a wand and turn everyone's lives backwards to how they were before but of course that's not possible "At the moment." On a positive note we all need to play a part in people's lives and help those who need it most. I will be reading your book and coming back to comment and with any love or help I can give to inspire those who really need it.

Hi Keith,

I just came across your book whilst looking at something else. I think you are very brave to have written your book and even more so a touching story about the struggles, ups and down in a real-life story with someone living with the progression of Alzheimers, that person of course, being yourself.
I will be reading your book and coming back to comment. In the meantime and in my opinion we should all reach out to those who are suffering with Alzheimer's in anyway possible and I send love and strength to all those who are reading this message.

Thank you very much Kay. The idea of the diary format and letters is one that not everyone finds accessible. I hope that when reading it you can take something from it along the lines of how someone who was given 3 - 6 years of reasonable quality of life can with support, friendship and love carry on “ living well” for longer than this. The book also illustrates some of the initiatives I’ve seen to help other people with dementia whilst writing about the many challenges I have faced and continue to.

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