In memory of…

This book project is in memory of Janet Berry, my mum.

She was diagnosed with Alzheimer’s in the spring of 2004 and moved to a new home near where I live in September of that year. I gave up my job in 2005 to look after her and took her for her last holiday to Walt Disney World that autumn.

In late 2006 she began to show signs of severe deterioration, getting lost outside her home (and also, later, in it), and losing the ability to care for, or toilet, herself properly. She had visiting carers – originally just once or twice a day – who would come to make sure she was washed and dressed, and that she went to bed at night.

As the disease progressed, she began to hallucinate that people (usually on the television) were trying to break into the house and kill her. She spent a lot of time frightened, recoiling in horror, crying or trying to express panic. She often struggled to string together more than a couple of words of sense.

In April 2007, after advice from carers and the council, I applied to move her into a residential home alongside other people with dementia. There were countless forms, assessments, reviews and agreements to be made and/or signed before the simple act of walking one very sick 63 year-old lady less than a mile to her new room could occur. It was a huge relief to have finally achieved it, not to mention the added comfort of knowing that, finally, professional carers would be looking after my mum.

She still knew my name at the time, and treated me as her only friend. Every time she saw me, she told me how much she loved me. She continually asked the carers where I was, although eventually this too passed. I never actually told her she was being moved. We just left her house and walked to the home together, down the high street, with a suitcase of her clothes. She skipped once or twice like a little girl. She liked to be out in the sunshine.

My mum passed away on the morning of 2nd November 2009 at around 2.45am. She had been admitted to the hospital in Welwyn Garden City at about 1am after the night workers at the care home felt her to be cold and clammy and called an ambulance.

I arrived shortly before she died, literally a matter of seconds. At the end, she wasn’t suffering. She was calm from the time she was admitted. I believe that something inside her was holding on to give me the chance to say goodbye, or let her know that I was there with her. Given her long but inevitable deterioration over the previous six years, I’m at a loss to understand what that something was but, nevertheless, she did not leave until I was by her side, holding her hand and that is some comfort to me. The chaplain was called to say some prayers and give her a blessing.

Although she was well into the later stages of Alzheimer’s when I had last visited her a couple of weekends before, she had seemed relatively bright (and even said “Hello”, not a regular occurrence). It was a Sunday and the Salvation Army held a service during which hymns were sung and she seemed to enjoy it. She munched happily on the chocolate Minstrels we shared. That is how I prefer to remember her, not cold and glassy-eyed on a hospital bed.

Alzheimer’s is a disease that has no cure. It robs its victims of their personality and memories. Before she was ill, my mum had all kinds of favourite things she liked to do: listening to Elvis, The Beatles and David Soul; acting in amateur dramatic society pantomimes; applauding the players at the Wimbledon tennis finals; helping give the communion at her local church; laughing at the antics of Lee Evans and Eddie Izzard on TV. Over time, she forgot all these things, and more – how to eat, how to talk, how to walk. I hope she also lost the ability to be scared.

It is a form of illness I wouldn’t wish on my own worst enemy. Research is the only way to uncover a cure. That’s why I am working on this book. I hope that you will help in whichever way you can.

Thank you for reading.

Steve Berry, July 2011.

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