Mabel’s mum had vascular dementia for 15 years before she passed away in 2014. She had been hospitalised more frequently in later years, eight times in 2010. Her father also suffered Alzheimer’s dementia for three years before he passed away in 2014. Mabel cared for her parents and travelled regularly from Newcastle to their nursing home in Sydney to look after them and stay with them in hospital. Mabel’s story highlights the challenges faced in managing her parent’s illness, including the fact that English was not their first language and that Mabel had to travel long distances to help care for them.
When a person with dementia goes to hospital and cannot speak English it makes things more difficult. I was able to translate for my parents when they went to hospital. It was important I was there so staff could rely on me to interpret my parents’ often confused behaviour. It was tiring, but I couldn’t leave them alone and I knew staff appreciated me being there to help. Coming from a Chinese background also meant my parents were not used to Australian hospital food – mum wouldn’t eat it and staff were worried she would become dehydrated. Being there, I was able to communicate the cultural differences and that mum didn’t normally eat Australian cuisine.
I lead by example when at the hospital, and was willing to help others. I was happy to translate for other Chinese patients who couldn’t speak English – I could only imagine how scary it was for them.
It was taxing being at hospital and I missed my children. The travel was hard. I was lucky to have support and to be able to stay with my eldest son, who lived in Sydney. I would support the provision of budget or funded accommodation for carers where possible. For example, a Ronald MacDonald House ‘for carers’ who need to be with their parents at hospital but may not be able to afford a hotel room for long periods of time if they live interstate.
The staff and patients said that I was a wonderful daughter, but after my dad passed away suddenly I realised the time is now. There is no take two in real life. It is better to spend more time with our parents when they are still around. That is my message – take the time now and live, build memories and make the most of life!