Living with dementia magazine May 2010

Victoria Jones explains how fresh challenges and loving support enable her husband, Nick, to retain a sense of self.

My beloved husband Nick was a Cambridge scholar who was education adviser for English here in Devon, and a writer of educational books and plays.

As a couple, we were determined to achieve as much as we could in life, squeezing extra hours out of the days as we brought up three children, restored our house, and pursued our passion for theatre, the arts and travel. 

In 2001, Nick was running an arts in schools project as well as the county youth theatre. He had recently published a much-praised paper and written a play. But he kept telling me he was slow to respond to questions, had trouble using the telephone, and that people were irritated with him.  

Gradually his enthusiasm, wit and drive disappeared. He became passive and overwhelmed by everyday annoyances. He became emotionally apathetic and withdrew as he lost confidence and friends. It was very hard for him to accept help or to admit that he couldn't understand or do things. He was depressed for some years, and difficult to live with. 

PPA

Nick was diagnosed with primary progressive aphasia (PPA)* five years ago. Although there is no treatment for his condition, diagnosis made life easier, as at last we knew what was wrong.

PPA refers to a progressive impairment in language resulting from degeneration of the left side of the brain. The term semantic dementia (gradual loss of the ability to remember the meaning of words, faces and objects) is also used to describe Nick's condition, and I find this more helpful.

Nick doesn't understand the meaning of everyday things in his immediate environment. For example, he doesn't know whether something is for him to eat or use. If I put a dead mouse in the bread bin, he really would eat it for breakfast.

The rate of deterioration for Nick is slow, but he is now highly dependent on others to support his daily life. Things have become easier, as he now accepts and appreciates the support he has from a range of people.

He is secure in his own home (with the live-in help - me!) but lost outside it. He remains very conscious of his limitations but also determined to achieve and to participate wherever he can.

Keeping active

Nick spends much of his time drawing, an exceptional skill which he has developed in the last couple of years as his language has become severely limited. He has completed a series of designs of English misericords, of which he is very proud. These will be exhibited in Exeter Cathedral later this year.

He completes complex jigsaws (without using the picture as a guide), and does 'fiendish' level sudokus and 'killer' puzzles daily. He challenges himself not just to maintain his skills but to improve his performance by timing himself.

Support

Without intervention, Nick would spend all his time in his room as he is not able to plan or organise an independent life. Family, carers, friends and the local community ensure that he continues to lead a full and active life. 

Every week, Nick meets a friend who plays chess with him over a bottle of wine. The chance to compete on equal terms in a game is for him very significant.

He is physically fit, walking several miles twice a week, and he recently swam a mile for the first time. Those who accompany him appreciate his uncomplicated enjoyment of what he sees around him, and his unusual questions. For Nick, the world is always new and interesting.

Staying involved

Nick wrote, performed and directed for the local drama society and is still included as much as possible. He recently took a small part in a Shakespeare production and although he didn't understand the words, he nonetheless performed several lines. 

He has a keen interest in the local rugby team and attends all home games. His season ticket seats him with a friend and at half-time another old friend joins him for a drink.

Nick has retained his strong love for his family. He is very proud of all of his children. Last year, our daughter was married and Nick not only walked her down the aisle, but he spoke briefly and declared his wish to be a grandfather. So, he is still looking forward with optimism.

Although his awareness of the world is partial, he makes the most of what he can see and do and most of all he knows what really matters in life - loving and being loved.

• *If you want to know more about Nick's condition and its effects, the most informative website I know is www.cerebralfunctionunit.co.uk
  
• To watch a short film about Nick and other people with dementia, visit www.innovationsindementia.org.uk