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Christina, her sister Stephanie, and their mother Kay took a somewhat unconventional approach after Kay was diagnosed with dementia, involving a beautiful blend of adventure, togetherness, love and laughter.
“Our story is a little different because, following Mum’s diagnosis, we sold everything we owned and hit the road. My sister and Mum now live in a caravan, and I live in a bus, and we’re travelling around Australia. We have been on the road now for about 15 months.
“For the three of us, the travel aspect of Mum’s experience with dementia and our experiences of caring for her has been very important and beneficial. Of course, it’s had its challenges, but they haven’t been unsurmountable.
“In taking this route, we’ve found a solution to caring for Mum that works for all of us. At this stage, I can’t imagine us approaching Mum’s dementia and our caring roles in any other way.
“While my sister takes the ‘strict parent’ role in the family dynamic, my role is ‘Entertainment Officer’. As part of this role, I said to Mum one day, “Guess what? We’ve started a club! It’s called The Gorgeous Club, and you’re the President.” She was thrilled! I then created a public group on Facebook called The Gorgeous Club, and we now have 500 followers from all over the world.
“With a disease like dementia, where people can sometimes lose connections and friendships, taking this fun and humorous approach has been hugely beneficial in making sure Mum continues to feel connected and part of a community.
“Humour has been of paramount importance to us during this journey and is a fantastic coping mechanism. It’s one of the most important coping mechanisms we’ve had at our disposal! We’re always finding opportunities for laughter, and Mum has such a gorgeous laugh! We want to hear Mum laugh as much as possible and want to do the same ourselves.
“So, if Mum looks like she’s about to cry, we’ll make a joke of it. We’ll say, ‘Pretty soon we’ll all be crying, and we don’t have enough tissues to go around!’ And before long, we’ll all be sitting around and laughing.
“I suppose we have been lucky because we haven’t really encountered any attempts at dementia-related humour that we’ve found to be in poor taste. I think when that does happen, it’s probably based on misunderstanding and nerves, because a lot of people just don’t know what to say.
“To tackle and challenge any tasteless comments or attempts at humour, and to help overcome a lack of understanding and stigma, I think the best way to respond is with patience and by demonstrating an understanding of people’s lack of knowledge about what dementia means.
“As I imagine it is for so many others, our journey with dementia has been a lesson in patience, not only for our mother, but also for those around us who have no idea about what dementia entails. So, I try to share a little insight wherever I can with people about what life with dementia can look like. I hope this provides some appreciation of the realities.
“If people seem willing to learn a little more, I refer them to my blog and to The Gorgeous Club on Facebook. We receive wonderful feedback from people who are discovering more about dementia via these platforms and through our lived experience. I love that! It means we are using fun to facilitate a conversation, and that’s great for creating a broader understanding of the disease.
“Our family is all about love, and we approach everything we do from that perspective. I think this approach means we don’t get too upset about the stigma or misunderstanding we encounter, and I feel that might be a great approach for others, too. Our motto is ‘because love matters’ ... and we should probably add, ‘and so does laughter!’”
Want to know more about dementia and humour? Check out these articles:
Is it okay to make jokes about dementia? We’ve probably all heard jokes about dementia. But are they funny or are they discriminatory and hurtful.
What happens when the joke is about you? Hear from people living with dementia about their sense of humour, what it feels like when people make jokes and how they respond.
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