industry & reform
Eileen and Dubhglas Taylor . Photo : Supplied .
Through the fog
One couple ’ s fight against dementia discrimination .
By Conor Burke
Eileen and Dubhglas Taylor tell me a
bit about how they met . Dubhg was a drummer in a band , Eileen was a babysitter , and they met a party . They are closing in on 53 years of marriage this November , they say .
You can tell from the way they talk about how they met and migrated from South Africa to Australia . They often answer jointly , picking up on each other ’ s answers , sometimes correcting one another in the soft way couples with that kind of longevity do .
It ’ s nice , and it gives me a good idea of how much they rely on each other . They ’ ve lived a long life together , worked together professionally and , now in retirement , they navigate dementia , together .
“ Well , I was diagnosed in ’ 59 , not 59 …” Eileen says of her diagnosis . “’ 89 ,” Dubhg corrects her . “‘ 90 ,” Eileen replies .
“ It was about ’ 89 or ’ 90 when Eileen was diagnosed . So about … Sorry , no , hang on . I ’ m getting mixed up now . 2009 , 2010 . So about 10 years ago ,” Dubhglas eventually corrects them both .
It was early 2010 when Eileen , then 59 , got a diagnosis of early onset dementia . And in a familiar tale , she describes how she had to push her doctors to give her the test .
The Taylors had an inkling that Eileen might have dementia as they ’ d had firsthand experience with the disease .
“ I had noticed differences in Eileen . It was actually me who diagnosed her father when he had Alzheimer ’ s and that was in 1981 ,” Dubhg says .
“ I had gone to the US with work and I was on a flight from LA to Denver when I read an in-flight magazine where they were celebrating the year of Alzheimer ’ s in 1981 in the United States .
“ I thought , ‘ Well , this sounds a lot like her dad .’ Back to Australia , there was no Alzheimer ’ s Association and there was no Alzheimer ’ s , nothing , back in 1981 . There was a small Alzheimer ’ s Society in Adelaide . And that was the only thing in the whole of Australia .”
The doctors didn ’ t listen then either , brushing off the family concerns . Their father was just an eccentric old man they said . It was another five years before he was diagnosed with dementia .
Fast forward to 2010 and another news item on genetics and Alzheimer ’ s prompted Eileen to push for her own diagnosis .
“ For me , it was devastating . I thought , ‘ I can ’ t be , I ’ m educated . I ’ ve got a Master ’ s , with Honours . And , I ’ ve taxed my brain in that sense with education .’ And so , I ’ ve got four sisters ,” Eileen starts . “ Three sisters ,” says Dubhg . “ I mean , three sisters . And yeah , so … so , I was absolutely devastated . I broke down when they told me .”
“ I was terrified ,” Dubhg says , “ because I had seen her father go through the progression of his illness . And prior to him going into residential care , Eileen ’ s mum was looking after him and her own mother who was quite aged at the time in her nineties .
“ I had vivid memories of the slow deterioration that her dad had gone through and the battle that her mum had faced . And then some of the behaviours that he engaged in as he progressed with the illness as well .”
Eileen continued to work for the next few years and showed no major symptoms . She would struggle for the odd word here and there , but for the most part they continued to live life as normal .
8 agedcareinsite . com . au