Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s and their carers.

John tells his story of being a carer for his grandmother

As a boy growing up in central western New South Wales, John enjoyed visiting his Italian nonna (grandmother) in western Sydney.

“We visited quite often,” recalls John, now 25. “She was managing her day-to-day life, had a community of people she knew around her and enjoyed going to Bingo or seeing friends. She had a brother in the area, too.”

John, an only child, lived with his parents in a regional town where his father worked as a security guard.

“I completed my schooling and TAFE there,” he says. “Outside school I liked watching movies and playing video games, particularly the car-racing ones.”

But as John finished his education, it became clear that his nonna was needing more care than they could manage from a few hours’ drive away.

“It was at the start of Covid that we realised that she was going to need to be closer to us,” says John. “Her brother had passed on a few years before that. She had been diagnosed with Parkinson’s for a period of time and had been coping, but we realised that she was seeing the effects of dementia and Parkinson’s as well, and needed full-time care.”

After discussions with her doctor, the family found a respite care placement for her while they waited for a place for her in a residential care home in their town.

“It wasn’t an easy conversation to have,” recalls John or explaining the changes to come. “She was losing all her independence and moving away from the area she’d lived for decades.”

His grandmother’s house also had to be sold, and John and his family had to go through the household goods to sort and dispose of most of them.

“Going through her belongings was not an easy job,” says John. “Her house had been my ‘second home’ and so many things had memories. It was weird entering the house, knowing she wasn’t there. We’d had a tradition of honking the horn a couple of times in the driveway and we didn’t need to do that any more.

We had a skip bin and the Salvation Army picking up donations. Eventually we packed the clothes she’d need and photos for her room. My friends hadn’t been through anything like that, but I could open up about to it one or two friends.”

As the family organised John’s grandmother’s move, John was chosen to become her carer, as his father was working and his mother had some health issues of her own.

“It was near the end of Covid and we were visiting nonna when we could,” explains John. “I took on responsibility as the primary contact for discussing medical issues, supporting her with visits and transport if she needs to go somewhere. I could comprehend issues more easily, and my work situation was more flexible.

“Her situation can change from week to week. Lately she’s had a few falls, so I am always on call, which can make things a bit of a challenge for my life. Each week I’d be involved for at least two or three hours with my nonna’s care. If I need to go away, I need to plan in advance, and see if Mum and Dad are able to help out.”

John’s experience as a young carer started with assisting his mother with her own health challenges ‘for as long as I can remember’, he says. Fortunately John was eventually able to find assistance with young-carer programs designed to help children with family caring responsibilities.

“I received a young-carer bursary which allowed me to purchase educational equipment and to go on camps with other young carers,” says John, who is now a Young Carer Advocate and Lived Experience Advocate. He is also currently studying for a Diploma in Counselling through the Australian Institute of Professional Counsellors, and hopes to be able to work in counselling in his community in the future.

John’s tips for young carers:

• Don’t hesitate to reach out for support – personally I have had nothing but positive support from school and friends
• Identify as a young carer; you may not initially realise the responsibilities you take on mean you are acting as a carer, and help is available
• Remember to try and take time out for yourself to switch off and recharge – I enjoy walking, swimming, going camping, exercising and meditation as well as being able to connect with other young carers and like-minded people

For information call the Parkinson’s NSW InfoLine on 1800 727 567