Dementia Awareness Week: My dementia story

When Terry Dawson’s wife, Mrs Sylvia Dawson, was diagnosed with the early stages of dementia he had no idea what to expect. As Sylvia progressively got worse he discovered that there is help out there you just need to ask for it. He has even written a book to try and help others living with someone with dementia. Mrs Dawson now gets full time care in a residential home.  This is his story;

When the original diagnosis was made, very little information was given to us. For the subsequent two or three years it was a question of trying to understand what was going to happen and how long it would be before the illness had a material effect on us.
“Her cognitive functions slowly worsened; there were an increasing number of small incidents such as being unable to remember her PIN number and, over a period of time, they began to occur with increasing frequency.
“Sylvia began to drive very slowly and, although I initially had no safety concerns, it seemed sensible to arrange for her to take a specialised assessment test.  Although the results indicated she was safe to drive the problem progressively worsened until I finally advised DVLA.  Her driving licence was quickly revoked and I don’t think Sylvia even noticed.”

Mr Dawson was under a lot of pressure as his wife’s main carer and it eventually became clear the he needed some help with the everyday things. He managed to get support from mental health services, the Alzheimer’s society and social services.

“The Alzheimer’s Society gave us a lot of moral support plus their weekly ‘Singing for the Brain’ session in Penrith.  Sylvia found this extremely enjoyable and valuable. The support from Social Services was a very practical including helping to arrange and fund a private carer – who coincidently was also called Sylvia [Brockbank].  As my Sylvia’s condition worsened we alsoreceived a lot of invaluable support from the mental health professionals.
“Both Social Services and the Mental Health Trust were always available by phone or by e-mail.  Their support was, at all stages, invaluable, unstinting and utterly professional.
“Sylvia ‘B’ was with us for three hours a day, six days a week.  She helped my Sylvia get dressed, took her shopping, to the hairdressers and went for walks with Sylviaand our Labrador.  This, plus helping generally around the house, took the increasing pressure off me.”

Sylvia Brockbank explained that sometimes Mrs Dawson would get confused when they were out walking or shopping but generally people seemed to take an understanding approach:

“Thankfully, there were only a few incidents. One day we were sitting in the park when, as a rather large person walked by, Sylvia blurted our ‘she’s fat’.  On another occasion, Sylvia just started dancing with someone she thought was a long lost friend, greeting them with a kiss and a cuddle – but when I enquired the lady said she’d never met Sylvia before. But she’d readily gone along with Sylvia instead of distressing her by saying ‘I haven’t any idea who you are’.
“She would occasionally go and give someone a cuddle but, thankfully, in my experience, everyone was quite understanding – which is good because you can’t very well wear a badge saying ‘I’ve got dementia please excuse my behaviour’ can you?”

Theresa McDonald is a Community mental health nurse and helped with Mrs Dawson’s care once her care needs became a little more advanced. She explained that she can help get the right kind of help for families:

 “Part of my role is to signpost people to the right agencies to get the help and support they need.  Supporting a family member with dementia can be an isolating experience and the families are going through their own emotions themselves, I put them in touch with agencies that can help them.
“Guilt is often felt by those caring for someone with dementia, but you have to remember that everyone has a limit to what they are able to cope with and there are lots of agencies who can offer support.
“Dementia is different for everyone but if we can get the message out there that there is help and get people talking about dementia then hopefully more people will ask for help sooner.”

Although he felt he was given lots of support Mr Dawson thinks more should be done to raise awareness and hopes his own experience can help advise others:

“There’s a lot more awareness today than there was 3 or 4 years ago but a lot more needs doing to raise awareness of the insidious and progressive nature of dementia.  You can now no longer simply brush it off with a dismissive statement such as ‘Nana has gone a bit odd’.
“I would have liked to have been given some indication as to how – and over what timescale – this disease was likely to develop.  I’m fairly sure Sylvia never realised what was happening to her and it would have been both callous and unhelpful for her to have known.”

Mr Dawson has now written a book chronicling his experience of the development of his wife’s dementia. He explains:

“The original suggestion came one afternoon, from a smiling Social Service worker.  The initial paper was only 12 pages long I then developed my notes and went back in time to the point when, in 1954, I first met Sylvia.  ‘Trying to Remember’ ends several months after she went into permanent residential care. The book has been well received across the world I have even had wonderful feedback from someone who read it in South Africa and initially it was being used as a training aid by the social care team.

“Whilst writing the book I was surprised at just how easily a host of memories came tumbling back; some were amusing whilst others fell between the uncomfortable and the painful.  The one thing I did learn was never to throw anything – photographs, letters, emails – away; they were invaluable in making ‘Trying to Remember’ a complete chronicle of the way Sylvia’s dementia developed and how it affected everyone around her.
“I strongly believe that, how an individual deals with the progressive worsening of dementia is intensely personal.  I slowly came to realise that Sylvia was no longer the girl I married all those years ago and, however cruel people may think it seems I – and our three children – prefer to remember Sylvia as she once was.
“No two cases of dementia are the same and, unless you’ve experienced living with the illness on a 24/7 basis for several years, I strongly believe you should avoid being judgemental.

Sylvia has been in permanent residential care for the past 18 months and, although she now no longer recognises any of us, she appears perfectly happy in that world of her own.  Whatever, and wherever, that may be.”