‘It was tremendously lonely because I lost my husband in any real sense, the man he used to be. Peter (above) was absolutely the love of my life,’ says Sue

IT was during a trip to Rome that Sue Finer first suspected something was not quite right with her husband, Peter.

He was the map reader and problem solver of the family but on this break in 1999 he seemed to have lost his epic sense of orientation. He took one blank look at the street map and, defeated, passed it back to Sue.

When Peter also started to display a lack of interest in work and was often repeating himself Sue put this uncharacteristic behaviour down to stress or depression and tried to ignore it.

But eventually, when things didn’t improve, the couple sought medical advice.

Sue, 66, recalls the devastating day in 2001 when, following an MRI scan and other tests, they visited the Royal Free Hospital for the diagnosis. They were told, quite matter of factly, that Peter had early onset Alzheimer’s Disease – he was just 54.

“When we finally got the diagnosis 18 months after things started to be a bit strange. I think we were both still in denial,” she says. “We were lost, on our own and there was no immediate follow-up, no one to offer further advice: ‘well, off you go, come back and see us in four months’ time’.

“I wish there had been some place where we could have sat quietly, spoken to someone or been given advice. There were so many questions and so many things to consider. Suddenly the future was a frightening place, full of unknowns.”

Sadly, there was no such hand-holding, just a sense that the future, with their plans of retirement, had been stolen from them.

“That was the awful thing: we were just starting to think about retirement,” she says. “The hobbies we could indulge in and the places we could visit. Peter had worked so hard building and running our business, we hadn’t really had a chance to do any of these things. And then it was destroyed in an instant.”

Sue saw a psychologist at the Royal Free Hospital who summed up how she felt.

“He said: ‘You are already grieving for a life that you are no longer going to live.’ And I thought: ‘Yes, that’s exactly it, I am grieving’. And with each decline and loss of function I grieved a bit more and a bit more.”

Sue also felt overwhelmed and bewildered. Almost overnight she was taking charge of aspects of their life that had been either jointly agreed or the sole preserve of Peter.

The data processing company they had built up, which was based in Warren Street, had to be managed, as did their finances. Then there was their home in France where they were hoping to spend more time.

Sue and Peter Finer

Ultimately Sue decided to sell their West Hampstead home of more than 20 years in Westbere Road to settle permanently in France – a kinder and safer environment.

Throughout this huge upheaval, Sue sought solace in diary writing and she catalogued the heartache of watching the ebbing away of her adored husband in the book, For Peter’s Sake: Surviving the Alzheimer’s Tsunami.

In the searingly honest book she describes how the “spectre of Alzheimer’s Disease” coloured every minute of her life.

“It was tremendously lonely because I lost my husband in any real sense, the man he used to be. Peter was absolutely the love of my life,” says Sue, who met Peter when she was 19 and he was 22 in 1969 and with whom she had three sons. “We ran every aspect of our happy lives together.”

When friends discovered her diary writing they suggested she should turn them into a book, that her experience might somehow help others facing a similar future.

“I had read so many books on the subject of Alzheimer’s Disease but none of them gave me an insight into what was going to come,” she admits.

Sadly in 2010 Peter died aged 63. His death in France was not the peaceful one for which Sue had long hoped.

“By the time he came to die it was honestly such a relief that both of us would be no longer suffer,” she admits.

Sue eventually returned to England in 2012 and made her home in Dorset where she volunteers as a Dementia Friend at Yeovil District Hospital.

She has written a living will and hopes that one day the assisted dying bill will be passed.

“If I was diagnosed with dementia I absolutely would not want to go through that,” she insists. “And I think if people had any idea of what it’s like to finally die from Alzheimer’s Disease, it might just change people’s attitude.”

Sue hopes that her book will help others “not to feel so alone, to understand that frustration, anger and sometimes a need to scream is normal”.

“Alzheimer’s Disease stole, and it really did steal, 12 years of my life, but at least I am still young enough coming out the other end to have a life again. The subtitle of my book is ‘surviving the Alzheimer’s tsunami’ – the tsunami that swept away our normal lives and our future. But I did survive.”

•For Peter’s Sake: Surviving the Alzheimer’s Tsunami. By Sue Finer is available for £7.99 plus £3 p&p by email: info@suefiner.com or as an ebook for £4.99 from Amazon. For more information go to www.suefiner.com
Fifty per cent of the proceeds from the sale of the book will be divided equally between the Alzheimer’s Society and Yeovil District Hospital Charity.