Today’s blog is about why I produced an Adelaide Fringe event this year, something I thought I should write about before I forget why I registered for it in the first place. It came about through a desire to change attitudes and break down the myths and stigma surrounding dementia, and to improve the services for, and service provision provided by health care workers to those suffering with this insidious disease. The script evolved from formal presentations, and the music was specifically chosen by and was played by two wonderful friends and musicians, Stella Foley (on the Saturday night) and Patrick Bateman (on the other three nights). Dementia is not well understood in our community, and mostly considered an old persons disease. It is often also thought to be a mental illness, which it is not. Transforming a presentation originally written for service providers was an interesting task, one that made me think outside of the square. Adding music and entertainment into the pot of dementia is not usual, and in doing so, this event is following on from many others including South Australia’s Urban Myth Drama Group and ECH Group who produced and performed Also A Mirror in the Adelaide Fringe 2011, a wonderful expose of older onset Alzheimer’s Disease.  Mine was a low-budget production, with financial and in-kind sponsorship and volunteers to support each event, and it aimed to raise awareness and to raise funds for Dementia Research and The Big Issue SA. My sponsors were Resthaven Incorporated, Alzheimer’s Australia, Scots Church Adelaide for the venue, and The Big Issue SA for their staff and marketing support.

Talking and writing about the symptoms of dementia has been helpful. For me, a phenomenological approach to this illness has been another key to staying positive; that is, studying the nature of things as they are, and investigating and describing my conscious experience in all its varieties without reference to the question of whether what is experienced is objectively real. My writing and presenting has allowed me to do this, not only by pushing me to think about it, but to express it in a way that has clarity and is meaningful, and allows me to share the experience, and for others to learn from it.  Wondering how to put on my underpants and thermals (!) or how to do up the laces on my shoes, struggling with hand writing, wondering when to laugh or cry, confusing my deodorant for my hairspray which merely gives me sticky hair and funny smelling armpits; these are all a significant pain in the arse and are happening more often, causing a renewed fear of the future. They are the sorts of things I thought might occur when I was 80, not at the age of 53. It also seemed incredulous to me that I would need to justify the diagnosis of dementia, and that living with it well is not seen as more positive. If I had sustained brain injury through a car accident, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the extent of my injury questioned. And, if my success was significantly greater than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently. In hindsight, perhaps this is another reason I decided to present My Unseen Disappearing World at the Fringe.

Presenting at the Adelaide Fringe has ticked a lot of the boxes that I hoped it would. It has raised awareness within groups of people who may not have thought about the impact of dementia before. It has raised a small amount of funds for dementia research and The Big Issue in SA (approx. $6000). The journalist who wrote about my event prior to the occasion talked about more fully considering the impact of placing her own mother into aged care. The younger friends of my sons who came, and many of them did (and I love them all for showing us this support), have been changed by listening to my story. Some have said they would try to be better grandchildren to a grandparent who has dementia, some have said they will try to be better friends to my sons, some have simply been moved to be more open. I have been humbled and deeply moved by their words and friendship. The event also showed me my family are much braver than I had ever imagined, and the emotional burden of sitting through those four events must have been hideous for them. My love for them has grown more than I thought possible. It has brought me closer to many of my family and friends, and has also filled in some of the holes made by the lack of support shown by a few significant others. With dementia, everyday is becoming a new day, every moment a new fresh one. Old friends are becoming new friends. My life is expanding because of dementia, not just disappearing, and I have met many wonderful people through speaking out and blogging. Will I do it again? I’m not sure as the personal cost was great, but presenting was one more way of making sense of this journey, and I thank everyone who came along for the ride.