The final farewell isn't easy. This growing service helped Vibha and thousands like her

SBS Australia

3 days ago

In a cosy apartment in Sydney's west, Vibha Gulati is looking at photos of her late mother, Bhusan. "She was an amazing person. She was very compassionate, very loving, very hospitable to people who came to the house." A migrant from India, Bhusan Gulati was 87 when she was diagnosed with a life-limiting illness. It was a terrible shock for Vibha who had lived with her mother for 35 years. "The doctors said she had ovarian cancer and that she had less about six months to live. It was shocking. It was really shocking. I was losing my best friend. We loved each other very much." After the diagnosis, Bhusan Gulati refused medical treatment and chose voluntary assisted dying at home in the care of her daughters, Prabha and Vibha. "It was important for her. She advocated for voluntary assisted dying. She wanted control over her death and the whole process of her illness. She did not want any chemo or radiation. Surgery was posed as an option, but that was also refused. She could manage herself quite well. She was just ill during the last week, she was going out to cafes restaurants till the week she passed away." Vibha Gulati says a mix of Buddhist, Hindu and spiritual beliefs helped to farewell her mother in December last year. "We had chanting here while she was passing away. So we had Indian chants, which are Indian mantras infused with spiritual energy. It creates a very calming effect on the mind and on the emotions as well." While faith has supported Vibha Gulati through her loss, the grief remains raw and is, at times, hard to bear. "My spiritual belief gives me strength, trust that I will meet her again and that she has not gone forever. I can feel her presence around me sometimes. So it's really, really lovely. But that loss is still there and I think it takes a lot of time to get used to." It's one reason she turned to an online support platform called the Violet Initiative, a national not-for-profit organisation that helps people navigate the last chapters of life. "I found out about Violet after she passed away and I had some counselling sessions online. The loss was great. It comes in waves so often that you think you're all right and then suddenly you'll be crying. I felt really understood by them. I felt they held the space very well to what I was going through. They didn't negate any feeling that I had." Vibha Gulati is not alone. In recent years more than 30,000 people have accessed the service. It offers guides and digital support, as CEO Melissa Reader explains. "We are really trying to help families and communities be more prepared around the last stages of a person's life. People come to us saying, 'I just don't know where to start. My mum is in her late eighties, dad might've died a couple of years ago. I'm usually the eldest daughter stepping into that caregiving role. I'm managing my own family, work, life, career and I'm completely overwhelmed'." As Australia's population ages services like Violet become more crucial. Caring for dying people in hospital already costs around $4 billion annually, according to Violet research. And Ms Reader says that figure will rise. "We have about 12,000 people turning 85 each year today. In five years there'll be a fivefold increase that'll be 60,000 people reaching that age each year. And our health and age care systems are at capacity today." More than 180,000 people die in Australia each year. Yet Ms Reader says few have prepared a will or left clear instructions about their end-of-life choices. "Up to 90 per cent of us want to be cared for at home for as long as possible with our family and our friends and everything that's familiar to us and the right services and supports. But that is not what's playing out today. So, we see people having at least four hospital admissions through the last 12 months, about 33 or 34 days, and we see one in two Australians dying in hospital. That is our least preferred place to die." Ms Reader knows first-hand about facing the loss of a loved one. She has raised three children since her husband died of cancer. He was just 39 years old. She hopes that Violet can provide the practical and personal guidance that she badly needed. "We were completely unprepared for Mauro's death. He died in intensive care. We were totally unprepared for it and it was a very clinical and impersonal experience and quite frightening for all of us, including him. This is not an easy stage of life. It's very complex, it's very emotional and there's a lot of uncertainty." Mitch Gibson is among Violet's 50 volunteer guides and as someone who has lived through grief and loss, she is proud to provide personal care and support for those struggling. "I was trying to run my own small business, a yoga studio, and then all of a sudden when my dad had just been diagnosed with dementia my life partner, Mark was diagnosed with stage four pancreatic cancer. And to say that my world flipped upside down is an understatement." That was 11 years ago and the eventual death of her partner led to a life-changing decision. "I was only 56 years old. And I decided I wanted to work as a grief and bereavement counsellor and care for people who were carers because I'd had lived experience. It was ideal. These are the conversations I want to be having. This is the help I want to be offering. I didn't ask for this to happen to me, but it did. And so I am now in that world as someone who has cared, so why not use that to help someone?" The Violet platform also has an AI-enabled digital companion which offers personalised support in multiple languages. Violet's Chief Product and Technology Officer Yaniv Bernstein explains: "What we have is a really clever, voice-based artificial intelligence agent that talks to people in the manner of a normal conversation. And this is based on thousands of hours of data that we have of experience that we have through our guided support program. People can have this conversation at any time. And what they then get is a real assessment of where they're at, what stage they're in, what their needs are." And those needs are growing. Violet Chair Kate Carnell says action is urgently needed. "We are sleepwalking into the century's biggest economic and social crisis right at the moment. What I think we need to focus on is ensuring that people in the final stage of life get the care and attention and the dignity that they want." As life expectancy continues to rise and the population ages, Ms Carnell says Initiatives like Violet are crucial. "Digital technology is fundamental to having an actual solution to this problem. One-on-one approaches are important, there's no doubt and Violet provides those, but giving people access to information and feedback 24-7 by trusted sources using digital technology and AI will allow all Australians affordable access to the information that they need. And that's what Violet's focusing on." Vibha Gulati and her mother Bhusan are among the few to plan their final farewell. Caring for her mother at home fulfilled her dying wish, she says. "She was very pleased with things, and gave her a sense of peace through the whole process. And also it gave her a sense of control of her own life, which is what she advocated for her whole life and it's how she lived and that's how she passed away." And Vibha Gulati has this advice for others. "Do what you think is best for you and your loved one and listen to your inner self and you'll know what's the best thing to do." Support is available through LifeLine on 13 11 14 or Griefline which provides confidential support on 1300 845 745 and via griefline.org.au