As per the NSW government, one in ten people in our state are carers who provide unpaid support to their loved ones. This is largely a thankless job too, as often the receivers of care are not in a position to acknowledge this value. The NSW Carers Awards is an initiative that helps to recognise the remarkable contribution these carers make to their loved ones and the wider community, and one of the recipients of the award announced this month, is Swati Lele.
Swati is 28-year-old Geeta’s mother and carer since her birth. Geeta, who has severe intellectual disability, mobility issues, autistic tendencies and chronic epilepsy, requires 24-hour care. Speaking with Indian Link, Swati tells her story as a carer – essentially the life story of Geeta and a story of incredible fortitude and immense love of this family.
A group of friends who have closely followed Swati’s journey from a struggling mum to a disability advocate, collectively nominated Swati for the award. Swati is a pharmacist in the emergency department of Bankstown Hospital. Her job brings her in touch with people with disabilities and their carers on a daily basis. Apart from fulfilling her pharmacist role, Swati listens to their experiences and tries to help them. “I equally draw strength from my interactions with them. What I do at work and what I do at home is all intertwined and shapes my life,” says Swati. Her calm manner belies the enormous amount of work she puts into her daily routines.
Swati is quick to point out that she cannot take the credit for her award alone, for husband Sanjay has been an integral part of this journey. He has always been the bread winner and Swati worked part-time to fulfil the caring role, but he has now taken an early retirement to look after Geeta. They self-manage Geeta’s NDIS (National Disability Insurance Scheme) plan. “This can be quite complicated,” says Swati, “but it is the best way to provide Geeta the most ideal care.”
Swati says that after NDIS came into play, the whole gamut of disability care is changing. This scheme’s focus is on the person with disability and not their carers. Support groups for carers, previously funded by the government, are disappearing. “We used to go for outings, share lunches and support each other and I miss that,” says Swati.
However Swati believes that like every new system, NDIS will improve. “It has lots of teething problems but we can now get the support when we want and what we want. We still have a long way to go. We go to forums to speak about what is right and what is not working.”
Bringing up a child with disabilities often takes a toll on relationships but in the case of the Leles, it has only become stronger. Older son Kiran, cannot imagine a life without Geeta and says this is his “normal”. Sanjay and Swati take turns at caring for Geeta and balancing other activities in their lives. Swati is also very thankful to her incredible network of friends. The couple are very much a part of the local Indian community. Sanjay is involved with the SBS Marathi radio, in theatre and in organising the 2019 three-yearly Akhil Australian Marathi Sammelan in Sydney. Swati’s father, Nana Badve, who migrated to Australia in 1974, was also very involved with the Indian community here, before he passed away in 2010. Now Swati also cares for her 87-year mother four days a week, along with the support of her two younger sisters.
Thinking about what the future will be for Geeta, is scary for Swati. “As much as our health, and Geeta’s health permits, we will continue to provide her care. When we are no longer able, we need to find a place where Geeta can be settled. It is a difficult decision to make and just thinking about it makes us teary and emotional,” continues Swati, with a strength in her voice that comes from acceptance.
Never failing to see the humour in situations probably helps. Recounting a recent incident Swati said, “We were at the local markets; Geeta was carrying her blue ice-cream container, which she plays with all the time. A man came and put a 5-dollar note into it!”
On outing to the supermarket can be interesting too. “When Geeta oohs and aahs, children ask their mothers about her or just stare,” says Swati, who does not miss this opportunity to introduce the children to Geeta, and ask them to say hello to her.
She says that what carers need is not pity but more empathy, more recognition. Saying things like “You are such a beautiful girl” to their child, “You are doing such a great job”, “Is there are anything I can do to help,” makes them feel better than saying “I am so sorry”. That is the key message Swati would like to convey.