By Jennifer Kent
BECAUSE love matters.
That’s the simple version of a much more complex answer from Christina and Stephanie Brown on why they’ve packed up their lives to travel around the country with their 88 year old mother, Kay, who for the past eight years has been living with dementia.
Their story is a blend of love, adventure, tears and laughter as they follow the ebbs and flows of what comes with being a full time carer to a loved one.
Kay, or ‘The President’ as she’s often referred to in their online group ‘The Gorgeous Club’ (you can check them out on Facebook) doesn’t recognise her daughters, but she seems to recognise the love between them and by all accounts is loving being on the road.
The trio have been on the road for 15 months, travelling a great distance from Maleny to Darwin to Perth, making their way back to Maleny where they’ve spent the past few weeks at the Showgrounds while catching up with family and friends.
Along the way they’ve met countless people, made friendships and garnered supporters, all while raising awareness and maintaining conversation about a disease which affects over 487,000 Australians.
“People would ask me what I would do if I wasn’t caring for mum, and I said, ‘this’,” Stephanie shared. “I thought, why wait, mum has always wanted to travel in the caravan, so I asked her and she said yes… so that’s what we did, we packed up and left Maleny for Darwin. Once we were in Darwin Christina said ‘you’re not leaving without me’.”
While being on the road emulates a sense of freedom and choice, the sisters openly admit that it is incredibly challenging and they are often at wits end, exhausted emotionally and physically.
“Whatever situation we would be in, there would be challenges,” said Christina.
“Is it difficult? Of course it is. Do sometimes we feel like our lives are on hold? Yes, our lives are on hold. Would we want to be doing anything else? No. this is our precious cargo.”
“We recognise we have a balance between us – Stephanie is the routine, structured full time carer, and I’m the entertainment coordinator, the gentle emotional side when things get difficult.
“We’re there for each other and there for Mum.”
They’re a balanced pair, just what Kay needs.
Most people have been touched in some way by dementia and for each and every person, the experience, the timeframe, the highs and lows are different, all heartbreaking in their own way.
Christina and Stephanie are experiencing it all while on the road.
“I’ve lost that conversation.. my confidant.. and that’s been difficult,” shared Christina.
“But, you know, I think it’s about understanding mum’s rhythm.”
“They talk about the new normal,” Stephanie explained. “It’ll be chugging along and then next minute, something will happen and then that’s the new normal.
“When we decided to go on this trip, mum was remembering we were getting the caravan and something happened one night and then next day she was different. It’s like this for a long time, and then it’s like this.”
They manage the challenges with laughter and support for each other and call the experience liberating, challenging and healing.
“What we own in our lives is this [gesturing to their set up].. this is it. We are our base,” said Christina.
“I feel we’re really lucky. I still think how many people get this opportunity to spend this time with their mum,” Stephanie shared.
“And how many people make that decision to take that opportunity. I think there are people out there that can but there’s something, maybe fear, [holding them back],” Christina added.
“But this is a crazy thing to do.”
“To us, we don’t see it as this special thing we’re doing, but when you look at it from someone else’s perspective, it’s different from what most would choose,” Stephanie said.
“We’ve got nothing.”
“They’ve got me,” Kay smiles.
And isn’t that everything.
If you’d like to follow along on Kay, Christina and Stephanie’s journey, you can find them on Facebook by searching ‘The Dementia Diary’, join ‘The Gorgeous Club’ or head to their website,
www.thetravellingbrowngirls.com.au
