Bill Gomatos wears his wife’s wedding on the little finger of his right hand. It’s safe that way.
His “angel” Chrisoula and wife of 43 years was diagnosed with dementia in 2004. Since then Bill has witnessed the heart-breaking effects of dementia from the most painful place, that of a loving partner.
Chrisoula is one of 269,000 Australians who suffer from dementia. The figure is expected to soar to nearly 1 million by 2050. In Victoria, 70,000 people are living with this cruel debilitating condition. 56 Victorians develop dementia every day. 71 year-old Bill Gomatos has been thrust into the role of a carer who offers every imaginable physical and psychological support, to their partner, who struggles with a cruel and debilitating condition.
“Chris stopped talking and walking four years ago,” says Bill, “then of course the role became harder.”
“Now my wife can’t talk or walk. I have to do everything, I shower her, toilet her, I feed her, change her, everything from A to Z. ” Not only do carers have to deal with the daunting physical effects of dementia, supporting their partner’s every waking need, but also they must deal with their own grief.
In the most serious cases, the person they used to live with, conceived children with, and still love, has in many ways disappeared. What remains is the shadow of a lover and life-long friend. But what is created in this awful scenario is a testimony to the power of unconditional loving care.
Bill and Chrisoula were both born in the town of Loganiko in the Peloponnese. Nine years older than Chris, Bill migrated to Australia in 1963, and it would be in Sydney in January 1968 where they would first meet and fall in love. They married in Melbourne six months later 1968. They would spend the next 30 years in the town of Euroa in country Victoria. Together they ran a shop and milk delivery business. Children came.
“We raised four daughters there,” says Bill proudly, whose fond reminiscences paint a picture of great happiness and fulfilment. “We had a fantastic life, a beautiful family. She loved to be active, to play tennis. She was the doll of the town, a young beautiful Greek girl with long hair down to her waist. “She loved to drive the truck and was the backbone of the business. She loved it in Euroa. We had an awesome life.”
Memory, and its loss, is at the heart of dementia. While the afflicted person loses the precious neurological connections that control their body’s functions, along with basic recollection, the memory of the carer holds a sharp, indelible record of everything that was good and precious and life-affirming in their stricken partner. But remarkable people like Bill Gomatos overcome unimaginable regret, frustration and grief, to make a difference to their loved ones when they need it most. Bill has recently written and had published a book on his experiences of caring for Chris.
Hold my Hand is a poignant recounting of Chrisoula’s sickness, but also a practical guide for carers of dementia sufferers, offering precious insights and immensely useful advice. The title refers to the one nightly loving ritual that Bill and Chris still share, and which sends Chrisoula to sleep in each night; the gentle touch of her husband’s hand. But Bill, and others like him, do not have to cope on their own. There are support systems, and the sooner a person at risk of dementia accesses them, the better the outcomes will be.
Currently 70,000 people live with dementia in Victoria. Every day, 56 more people develop the condition, and due to the increasing level of our ageing population, it’s getting worse.
“The graph is going up constantly,” says Maree McCabe, CEO of Alzheimer’s Australia Victoria. “By 2050 we’ll have 270,000 people in Victoria with dementia.” “Some 25 per cent of people with dementia are not getting any help at all, and that’s quite frightening,” admits the CEO.
“The more I talk to our clients who are living with dementia and their carers, what I hear more and more is the social isolation, and the experience of having to deal with it on their own. People don’t need to deal with it on their own, that’s why we’re here.” Alzheimer’s Australia, which operates nationally, and the many agencies involved in supporting dementia sufferers are adamant that early diagnosis is crucial. “If you are worried about your or a loved one’s memory just ring up, and talk to somebody, maybe it’s not dementia, but if it is, there are better outcomes for people who get an early diagnosis,” says McCabe, “life doesn’t stop with a diagnosis of dementia. People with a diagnosis of dementia can continue to lead a fulfilling and rewarding life, and there is help and support available.”
Fronditha Care, which provides services to Australian elders of Greek descent in Victoria, told Neos Kosmos that based on ABS figures, the population of Greek elders in Melbourne will continue to grow until at least 2016, when it is expected to peak at around 30,048, an increase of 154 per cent since 1996. With dementia directly linked to a community’s aging population, the Greek community’s experience, in terms of the scale of the problem, and how it is perceived, is culturally specific. Research shows that the community has challenges with dementia over and above the national norms.
“It’s growing in line with the ageing population of Greek Australians. One in four people over the age of 85 will be diagnosed with dementia, says Anne Davey, regional manager at Fronditha.
Davey points to specific reactions within the community that often thwarts an early and vital diagnosis. “One of the main issues for us is that dementia isn’t diagnosed in a person from the Greek community until a later age, in contrast to the Anglo-Australian community By the time they’re diagnosed, the dementia is often at a much later stage.” “People can often feel ashamed at the behaviour of their spouse or parent. So they try to keep it under wraps,”
“There’s such a stigma around it, a refusal to believe it. Often educated middle-aged people with parents who suffer from dementia, refuse to believe the behaviour displayed by their parent is a consequence of the condition. There’s a denial.” Fronditha has begun working with Alzheimers Australia to find more ways to support dementia sufferers and their carers in Victoria. One plan is to create memory cafes – informal social gatherings for dementia sufferers and their carers.
The idea is to create Greek speaking social situations, allowing couples and other family members, the chance to share experiences and support each other. The last words are perhaps best left to Bill Gomatos, whose life beyond caring for Chrisoula, now involves making regular presentations at community meetings in a bid to share his experiences and help others. “It’s imperative people are open about this in the family, and contact the National Dementia Helpline if they are worried about a loved one possibly having dementia, too often people keep it secret.”
“There’s also a huge lack of understanding in the community about how the system works to help dementia sufferers and carers. If people don’t know how it works they will miss out – on personal and financial help.” A
sked why he has taken on the role of advocate for so many, when confronted with such a workload in looking after Chris, Bill’s answer says it all, “We had a wonderful life. I just want to give something back.”
The National Dementia Helpline is 1800 100 500 or visit www.alzheimers.org.au For details on how to purchase Bill Gomatos book HOLD MY HAND visit www.holdmyhand.net.au. Hold My Hand by Bill Gomatos. ISBN 978-0-646-55163-0. ($19.95) All proceeds go to helping provide dementia care resources in Victoria.