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Eileen and Dubhglas Taylor Photo: Supplied.

Through the fog: the couple fighting dementia discrimination

Eileen and Dubhglas Taylor tell me a bit about their history. They tell me about how they met; Dubhg was a drummer in a band, Eileen was a babysitter, 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 first-hand experience with the disease.

“I had noticed differences in Eileen. It was actually myself 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 read this article and I thought, ‘Well, this sounds a lot like her dad.’ Came 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 five more 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.”

People reacted quite strangely. So, some people kind of stopped talking with her, I mean, connecting with her in some ways.”

“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 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 in terms of what to do or what not to do. 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.

Sour ending

One unexpected side-effect first showed up in 2015. Eileen decided to retire and gave her notice into her employer, finally revealing her dementia diagnosis to colleagues.

People reacted quite strangely. So, some people kind of stopped talking with her, I mean, connecting with her in some ways,” Dubhg recalls.

“That was quite challenging for Eileen at the time as well in terms of handling some of the stigma and the real kind of discrimination that she experienced, because suddenly people knew, well, you’re not the same person we knew, in fact, you are someone living with the dementia.”

Eileen remembers a few colleagues asking her how they could help. She told them to treat her the same. “But I haven’t heard anything from them since then,” she says.

“The myth is that everybody who gets a diagnosis of dementia is at the end stage of the disease. And that’s just not true.”

Societal stigma

The stigma that a diagnosis of dementia carries is a struggle and a symptom of a wider lack of knowledge and empathy that runs throughout our society.

They recall another incident when they were asked to conduct a dementia audit of a local hospital as consumer advisors.

As they walked through the hospital issues popped out such as white toilet seats (which people with dementia often struggle with) and lots of other dementia un-friendly features, but it was the attitude of hospital staff which stuck out. The Taylor’s overheard volunteers commenting on their audit and making disparaging comments about people with dementia.

“The myth is that everybody who gets a diagnosis of dementia is at the end stage of the disease. And that’s just not true,” says Eileen.

“That’s a common one that we’ve noticed over the years. Most times when people hear of somebody living with dementia, they always think of the end stage. So the end stage being when the person really kind of loses almost complete touch with reality,” Dubhg adds.

“You can live a fulfilled life even with a diagnosis of dementia,” Eileen says.

Advocating for change

Life has changed for the Taylors. Dubhg is now Eileen’s care partner and they have had to face those new roles and the challenges they bring.

“Oh,” Dubhg says when I ask how life has changed, and then I hear them both chuckle. I imagine them shooting a knowing sideways glance at each other. “There’s been a few changes there. I mean, it’s been quite interesting the journey, because I mean, when we were both working, in terms of our division of labour in the house, Eileen probably would have done the majority of the cooking…”

“And the cleaning,” Eileen adds.

“And the cleaning,” he agrees.

“So initially, I found myself having to do a lot more cooking, a lot more cleaning because one of the things that happened for Eileen too is that, and this happens for people with dementia, but they don’t have the same inertia that they had. I mean, so Eileen would be a lot more laid back. For example, she would not, actively pick up and proactively …”

“There’s an apathy about it,” says Eileen.

“She doesn’t sort of proactively think, ‘Oh, I better go and do those dishes over there,’ or ‘Gee, I need to put things away,’ or ‘Gee, I need to make the bed,’ or whatever. She doesn’t do that. So largely that kind of falls onto me,” Dubhg says.

For Eileen, the difficult times come with the “fog” as she describes it. The days when the brain fog descends, when she can’t quite put things together and she becomes very inactive. She tries not to dwell on it, but she says it’s a constant fight “because the brain fog could take over at any time and I don’t want it to”.

Dubhg has his struggles too. Life as a carer and watching dementia impact your loved one is tough, although he tries to “grin and bear it”. They both have a stoic determination about them.

One way the Taylors fight that fog, tackle that stigma, is by advocating and educating. There are an estimated 459,000 Australians living with dementia, most of whom do not have a voice, so for Eileen and Dubhg speaking out on the issues and telling their story is important.

For me, I think there has to be a change. There has to be a change in the world where there’s no stigma.”

Eileen has been a member of the Dementia Australia Advisory Committee since 2013 and is one of the founding members. While Dubhg helped develop the first dementia support organisation in Brisbane, is one of the co-founders of the Dementia Awareness Advocacy Team (DAAT) and is actively involved with their “Remember Me” Dementia Support Group. Plus they both speak at conferences regularly.

“One of the things that was a major inspiration for Eileen was, because she’d lost the social contacts and then she discovered the DAI (Dementia Alliance International), suddenly she was with other people who were in the same condition that she was, and she was accepted and she was included. Feeling excluded is a big issue for people living with dementia,” Dubhg says.

“Because we, in our social work background, we come from an issue of social righteousness or social rights, human rights issues as well. So we kind of realised that with dementia, there is a human rights issue there. And in many ways, dementia rights are human rights, so you can’t get away from it. So that’s probably one of the motivators that’s kind of driven us, I guess, over the time.”

“For me, I think there has to be a change. There has to be a change in the world where there’s no stigma. I mean, for me there’s just hope that there will be a change that people are more accepting of people living with a dementia diagnosis,” Eileen adds.

Our conversation followed a pattern, Dubhg might start to answer my question and Eileen will come in, putting a fine,eloquent point on the idea – confounding my expectations of what a conversation with a person with dementia is like.

As for the future, Dubhg has taken up drumming again, something he can do on his own as Eileen is not a big fan of his chosen instrument she admits. It’s a release for him once a week and pre-COVID was a social outlet for the more outgoing of the pair.

We finish our conversation the way we started, Eileen and Dubhg, together, telling me something I didn’t know, this time urging me to check out the latest dementia research they’d heard about.

They are hopeful about the future and are looking to continue their fight against dementia discrimination.

“All mine is hope. Hope there’s change, hope there’s a cure. I don’t dwell on the final stage, it’s too hard to think about. And most probably I won’t know what it’s about when I’m at that stage,” Eileen tells me.

Last week was dementia action week and the theme this year is A little support makes a lot of difference. The aim is to tackle stigma and discrimination.

Find out more at https://www.dementia.org.au.

And for more support go to https://www.dementiaallianceinternational.org.

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