Dementia book brings disease into the open
After Angela Caughey’s husband was diagnosed with dementia his behaviour finally started to make sense.
Brian had been ‘‘losing his way’’ for months, Mrs Caughey says.
He was becoming stiff, struggling to keep up with conversations, finding writing and reading difficult, adopting an increasingly impassive expression and falling multiple times a day.
He was initially diagnosed with Parkinson’s disease but two years later the couple were told he had Lewy Body Dementia.
It’s an umbrella term for a set of symptoms that include some of the features of Parkinson’s and dementia.
Mrs Caughey was Brian’s carer for 12 years until he died in 2006.
The 83-year-old woman has written Dealing Daily with Dementia to provide practical strategies for other carers. Its launch today coincides with World Alzheimer’s Month.
Dementia comes with a lot of stigma, shame and fear, Mrs Caughey says.
Some of her husband’sclosest friends stopped visiting because ‘‘they didn’t want to see him like that’’.
It left him feeling hurt and isolated, Mrs Caughey says.
‘‘We need to talk about dementia because so many people are getting it.’’
Mrs Caughey says her husband was always a gentle man but the disease changed him in many ways.
During a stay in hospital after Brian had a heart attack, nurses called to say he was on a ‘‘rampage’’.
Mrs Caughey suggested staff read him the business news while she made her way to the hospital.
‘‘When I got there, there he was sitting up in bed, calm and peaceful, listening to the news.’’
Mrs Caughey eventually joined a support group after trying to cope by herself for a long time.
She says the decision was a life-saver.
The group of women would get together monthly to share wisdom about caring for their husbands who have dementia.
It was where the seeds for the book were sown.
‘‘We laughed so much when we heard some of the stories. We wanted to collate them all for other people – there was nothing out there like it.’’
Alzheimer’s New Zealand executive director Catherine Hall says World Alzheimer’s Month is about raising awareness of the different types of dementia and where people can go for help.
‘‘For every person with dementia there is a whole network of people who are affected by the diagnosis.
‘‘We need to get past the stigma and bring dementia into the sunshine.’’
Angela Caughey, 83, has written her fifth book. It is about her experience of caring for someone who has dementia.