Tom’s story: sonnets v dementia

August 23, 2016
Tm's story: Sonnets vs. demenia

Tom Michael Blyth is an actor working in London, originally from Blackpool. His father was incorrectly diagnosed with Alzheimer’s in 1997, at the age of 57. Tom was 17. He is now raising funds for Dementia UK through Sonnets V Dementia at www.allthesonnets.co.uk.

I don’t remember the exact date my father was diagnosed with dementia, to me that seems a waste of memory, but I do remember the moment that he told me. I had been waiting impatiently at home for my parents to return from what the doctors had told us would be the final diagnosis, an answer at last to what had gone wrong with Dad. Sometime beforehand he had been sent home from his work, conducting insurance medicals for the civil service, with “stress”. He had struggled to fill in the paperwork related to the job and his employers had noticed. What I didn’t know then was that my mother had noticed there was something wrong with him long before. She had already visited our family GP to discuss her concerns and he had been the first to use the word “dementia”. Dad did his best to shield us from that idea until his illness made it impossible to ignore. A GP himself, he must have known what would happen to him, and how severe it was. So when I think back to the moment he walked through the door that day I don’t think of my pain at hearing what was wrong with him, I think of how terrified he must have been inside but still he managed to turn it into a joke, to protect me.

“So? What did they say?” I said.

Dad put his forehead against mine and replied…

“I’m a durr brain! I’ve got a mild form of Alzheimer’s.”

I was 17, so I had no idea that there is no such thing as a “mild” form of Alzheimer’s. It may start mild but the rest is inevitable. None of us had any idea then that actually he didn’t have Alzheimer’s at all, but rather the then little understood Lewy Body Dementia. When his symptoms didn’t fit with those expected of Alzheimer’s the doctors re-diagnosed, with this illness that even they seemed to know little about. It is a brutal and debilitating form of dementia that shares symptoms with Parkinson’s as well as further effects specific to the illness, such as hallucinations and sleep disturbances.

Someone with Lewy Body Dementia increasingly needs extensive nursing care and in Blackpool at that time there was very little on offer specific to our needs. We received no in-home nursing care and only the occasional day centre visit would relieve the stress on Mum, who had become Dad’s carer 24/7. Though my brothers and I were there to help during some of the six year period from first diagnosis to Dad’s death in 2003, Mum bore the brunt of the job. How she did it I will never know, she is superhuman in my eyes. Six years of increasingly disturbed nights, physically hoisting Dad in and out of bed, around the house and on and off the toilet, cooking, cleaning, dealing with the family finances and coping with my elderly grandmother; whose house we had moved in to when we lost our own. All while losing the man she loved.

She didn’t have access to Admiral Nurses then but they are here now, and Dementia UK are here to help people in exactly the same situation. This is why I chose to support Dementia UK. We can study the illness to find a cure for the future but right now people are suffering as they care for those they love. They need help and support and that’s what I want to achieve with Sonnets V Dementia. Thirteen years after Dad passed away I found myself working as an actor in London, after a change of career at the age of 28. I adore working with Shakepeare and the idea to somehow combine that with raising money for a dementia charity was born.

Our website went live in July [2016] and we already have donations coming in but it’s only the beginning. It’s a simple idea; listen to any of Shakespeare’s 154 sonnets, read by a professional performer, for free… but then consider donating, as all these performers have donated their time and talent in support of Dementia UK, in support of all the carers out there who need a helping hand. It’s an ongoing project, wrangling 154 performers will take time, but we are making good progress. The project already has the involvement of Olivier award winning actor Kenneth Cranham, Claire Skinner (Outnumbered, Doctor Who), Amanda Drew (Eastenders, Broadchurch) and star of Holby City Bob Barrett. With many more talented actors lined up to take part this project is gathering steam and I hope it will bring in lots of money for this vital charity.

Don’t forget to follow us on Twitter: @allthesonnets.

Sonnets v dementia

Find out more about the project and hear all the recordings over on the AllTheSonnets website

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Dementia Helpline

The Admiral Nurse Dementia Helpline is for anyone with a question or concern about dementia.

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