Real stories

Dear Alzheimer’s: Keith Oliver's letters on living with dementia

Keith Oliver's dementia 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

'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