Bernard's story

 

Meet Bernard

Bernard, 59, is a carer to his wife Tanya, 57. In 2015, Tanya underwent surgery to remove a brain tumour and has since suffered with side effects including poor balance and coordination, memory loss, weakness, and seizures.

Tanya’s condition means she needs assistance with day-to-day tasks around the house. Bernard’s caring responsibilities include cooking meals and taking Tanya to medical appointments.

Life changes

In 2010, Bernard and Tanya’s lives suddenly changed when Tanya began experiencing dizzy spells and difficulty walking, symptoms of what they would discover was a brain tumour. Tanya experienced sudden falls, which made it challenging for her to drive, use public transport and go out by herself.

‘It hasn’t been easy. The process of getting a diagnosis for Tanya was difficult - she was misdiagnosed multiple times,’ says Bernard. Tanya’s condition and frequent medical appointments meant Bernard, who was a contract manager at the time, stopped working and became a full-time carer to his wife. ‘It was physically impossible for me to be at work at that time,’ says Bernard.

After Tanya’s tumour was removed in 2015, she experienced side effects including pneumonia, fatigue and sensitivities to bright lights, sounds and smells. ‘We were living in Sydney at the time and our doctors advised that we should move to a warmer climate to improve Tanya’s condition. So, we moved to Queensland,’ said Bernard.

The importance of self-care

Soon after settling into their new life in Queensland, Bernard attended a disability expo to find out what support was available for Tanya. He ended up finding support for himself, too. ‘I was introduced to Carer Gateway,’ he says. ‘I thought they only offered emergency respite, but I realised there were so many other services available for carers.’

Through Carer Gateway, Bernard accessed services to support him in his caring role including counselling and he joined a peer support group. ‘At the support group we spoke a lot about the importance of self-care because it’s so hard when you are busy organising someone else’s life and you forget about yourself.’

Motivated by a deep aspiration to help others in a similar situation, Bernard became a peer facilitator at Carer Gateway. ‘It meant I could teach other carers how to make new connections, find a community, a purpose and receive the help they need.’

Bernard prioritises his well-being, starting his week by organising support workers to make sure he is able to take a break and spend quality time with Tanya. ‘Some appointments don’t require me, so I request a support worker and I take that time for myself. Sometimes I go for a drive or go for a walk, which relaxes me.

‘It’s like when you are on a plane and the flight attendant says, “Put your mask on first before helping anyone else”. If I am exhausted, I can’t do anything for her.’

In his spare time, Bernard likes to play guitar, paint, do Sudoku puzzles and read books. He also enjoys volunteering at a First Nations radio station where he hosts a show called Journey with Bernie where he explores ways we can make our lives a little more meaningful.

Advice to other carers

One piece of advice Bernard wished he could give to carers in similar situations is: ‘You need to look after yourself, take on self-care practices, set up your support network and get support from family or friends who you can call if you have an emergency. Use the time you have for yourself.’