It Takes a Village
Whilst researching for ‘The Forget Me Knot Connection’ I realised that the more I learned the more there is to learn about dementia, dementia care and dementia “prevention”. Ironically, one of the best ways of slowing cognitive decline is ‘lifelong learning’ which means that I have plenty of time on my hands to learn as much as possible. Luckily, there are some incredibly passionate people living in SA who are focussed on specific goals in dementia research and dementia care. How lucky are we?
I have, over the past weeks binge listened to the ‘Reimagining Ageing’ podcast after speaking to the brilliant researcher Ashleigh Smith from UniSA who is doing great things for dementia research. I particularly love her ‘24 hour’ approach. Time is the most valuable resource available and how we spend each of our 24 hours a day impacts not only our body and relationships, but also our brain health. How can we optimize the benefits of how we spend our time whilst at the same time maximising our quality of life? I can’t wait to find out and having a great time in the process.
I read ‘A Special Place’ by Sue Harris who was my sponsor when I was baptised in 2018 with my children. She is the warmest person I know, she is the Children’s Minister at my home church, an amazing performer and an advocate for the Premier’s Reading Challenge, which my children delight in participating in each year. When I read ‘A Special Place’, I was blessed to see another side of Sue. I was introduced to the Sue who cared for her father along his path through ‘dementia of the Alzheimer's type’. The book immediately pulls you in directly by your heart strings and for the duration of the book pulls on them much like Sue herself on stage with her puppets. This book has strengthened my resolve to create more ‘dementia friendly communities’ to support people living with dementia to live as independently for as long as possible.
I have since had this desire reinforced when I visited the Memory Lane Café and spoke to a care partner supporting a 58-year-old man living independently in his home with dementia, over a half hour drive from the care partner’s home. This requires strategies around the home assisting him to live independently. I am incredibly passionate about this side of dementia care as I am very focused on living well your way with dementia as a goal of ‘The Forget Me Knot Connection’. As every person is different, every person living with dementia is different. It is important to have at least one care partner who knows ‘their person’ and will advocate for them to live their best life all the way to the end.
The Memory Lane Café that I visit was formed by Geoff Richards, a dementia advocate with Dementia Australia and who is a care partner for his wife who lives with dementia. Geoff is one of the first people I came across in my role as Mission Support Worker for St Francis Anglican and propelled me down the path towards ‘The Forget Me Knot Connection’. Just as most unpaid care partners, Geoff was suddenly thrown into his care partner role in a way that makes me imagine being told a story of terrifying shadows before being thrust into a dark room alone and without a torch. When I visit the Memory Lane Cafe, I take my 56-year-old client. When I visited on Thursday it was raining and I always make sure that my client gets some activity in that could be considered exercise. This ended up with me, 5 people living with dementia and 3 care partners on a basketball court. The fun we had doing laps, throwing and catching the ball and even shooting some hoops. An unexpected delight and a great way to demonstrate ‘living well’ with dementia. Care partners all too often forget that their person still enjoys playing games and, it takes creativity to adjust the skill level to suit the participants, but, (in my opinion), seeing joy on faces is worth any extra effort required.
I am currently reading ‘The Dementia Doula’ by Wendy Hall, founder of ‘Dementia Doulas International’ who created the role of Dementia Doula to fill an incredibly important gap in supportive dementia care. As a Dementia Doula, she walks alongside people living with dementia and their care partner from diagnosis to death. She brings the torch to those locked in the dark rooms, desperate to make sense of the situation that they find themselves in. The Dementia Doula role is like the jigsaw piece that once in place makes it possible to see the bigger picture. In yet another turn of luck, Wendy lives locally and I am very happy to be meeting her in person to discuss Dementia Doulas and their role in ‘The Forget Me Knot Connection’. Watch this space…
The more that I learn about dementia, the more I see that it takes a village, people with different knowledge and skills to create a network of support that allows people living with dementia and their care partners to live a happy and meaningful life in their home and community. What makes a life ‘meaningful’? The answer to that is different for every person who has or ever will walk the planet. It’s this uniqueness that is the pearl that needs to be nurtured the most. A Pearl is made in a rough shell, but each pearl is beautiful and unique. The Pearl is the most cherished gem that is left at the end of a person’s adventure.
“Just when you think you are on top of things, the next moment you are taking a formidable plunge into goodness knows what. Then, on the bleakest of days when despair seems to be one’s only companion, there comes a gentle smile, a cheeky grin, a shared joy, a word of recognition from the one with dementia. These moments are rare and beautiful pearls. They are more precious than words can describe, gems worth gathering to savour in times of difficulty.” - From ‘A Special Place’ by Sue Harris.
For me, a meaningful life means spending quality time with my loved ones, playing footy with my friends, meditation, solo gym and yoga sessions in my garage, my role as Mission Support Worker for my church community and creating ‘dementia friendly communities’. If I was to be diagnosed with dementia, I would put in place supports that mean that my ‘meaningful life’ is preserved to the end. I see all too often people living with dementia who have been isolated and shut off from their ‘meaningful life’, particularly in my experience as Mission Support Worker, people kept away from church through either failing to have transport, fear of leaving the house or having their care partner decide not to support attendance. Andrea McDougall and I are working together to find a way to support people living with dementia to maintain their meaningful lives and support spirituality in whatever shape that comes in for each individual.
So, at the end of the day I have realised that it takes a village to support people living with dementia and the rest of the community so I am so pleased to have connected with, (and continue to connect with) to help put this important program together.