Journey into unknown
Dementia sufferers on the rise
TRUDY Forbes wants people living with dementia, and their carers, to know they are not alone.
The Grovedale grandmother, 71, was diagnosed with Lewy body disease 10 years ago after the youngest of her four children began researching the change in her behaviour.
Like many in the community she hadn’t heard of the lesser known, but surprisingly common, form of dementia before it impacted her personally.
“It was the word dementia that got me, because I’d never heard of Lewy body,” Ms Forbes said.
“I thought I’ll never know my grandkids and (the doctor) said, ‘it’s not like that, at this stage you will continue to recognise them’, but that was a big worry for me . . . I could see myself in a nursing home, all in that instant.”
While dementia with Lewy bodies has less impact on memory than other forms of dementia, hallucinations are a real and confronting part of the condition.
What started out quite mild for Ms Forbes quickly led to terrifying hallucinations of spiders and men breaking into the house, as well as tactile hallucinations of hair all over her body and in her mouth.
It wasn’t long before the condition began affecting her physically as well as mentally.
“My legs went pretty quickly, it’s part of Parkinsons,” Ms Forbes said.
“When I got my first walker I said ‘no I am not using that’. To me it felt like giving in, but commonsense quickly tells you, you have to have it.”
Her husband of almost 50 years, Ross Forbes, gave up his business to begin caring for his wife fulltime seven years ago.
To them Dementia Awareness Month, being marked through September, is as much about increasing awareness of carers as those living with the disease.
“People don’t realise how many carers are out there in the community. I never used to think about it,” he said.
There are 413,000 Australians living with dementia, a figure predicted to rise to 1.1 million by 2056 in the absence of a medical breakthrough.
The pair don’t know, and don’t want to know, how rapid her dementia may progress, but for now Ms Forbes is continuing to enjoy knitting, spending time in her garden and the company of her grandchildren and great-grandchild.
Australians are encouraged to find out more about dementia and the impact on sufferers and their families.
Call the National Dementia Helpline on 1800 100 500 or visit fightdementia.org.au