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Kevyn Morris is a proud Jegarra man who lives with dementia. Kevyn recently presented at the National Dementia Conference, below is an excerpt from his speech.
“You have dementia”
Dementia, the very word can send chills through even the strongest of people. It has been termed a slow death.
A diagnosis that not only affects a person but their families, friends and work colleagues. Even their very ability to have a job, continue study, or even continue their career or profession.
You walk into your doctor’s office with your wife, mother, father, sister, brother, even your child. Not knowing what to expect to hear, there are the usual pleasantries until the results of blood and cognitive tests are revealed.
It could be any type of cognitive impairment from Lewy body disease or frontotemporal dementia or any one of over 100 different types. The words come from the persons lips that there are things that have to be planned, and hard decisions to be made.
Everyone looks at you.
Those words hang in the air like the smell of fresh rain on the ground.
You have dementia.
Do you know that from now on your life will change? But just how long time will allow you isn’t an answer they can give.
My talk is not based on my life before dementia came into our life, but that my life wasn’t over after the diagnosis.
“How was I contributing?”
First you tell your mates, and they look at you with that ‘you don’t look like you have dementia’ face, or they say, ‘I forget things all the time you will be right’.
I was a furniture maker, and I could do a pretty good painting and drawing. But working with tools that could take your hand off in a flick of an eyelash was out, and I lost any desire to paint or draw. I sat in the house and wallowed in self-pity, until my wife Leanne got me a camera. The idea was to take photos of places we had been, people we had met or things we had done. But it opened a world to me I never knew about. I took photos of everything, our friends, family, local area and our Maine Coon cats.
But there was something missing, I felt like I was a drain on my family.
How was I contributing? How can look my kids in the eye? We found Dementia Australia, a simple phone call would change my life and Leanne’s in ways we couldn’t imagine.
“It made me feel like I still had something to give”
Had I thought about becoming an advocate for Dementia Australia? Well, I said in for a penny in for a pound, I would give it a crack, what do I have to do?
I can tell a story with the best of them, but my first presentation was at Parliament House in Canberra in front of politicians, Dementia Australia CEO Maree McCabe AM and a whole room full of people I didn’t know. I got about halfway through but then to say I crashed and burned would be an understatement, or so I thought. People seemed to appreciate and like what I said and told me it was good. I don’t know how long but after a while I got a call from Dementia Australia asking whether I would like to be a part of the Dementia Australia Advisory Committee.
From that time, I have had the pleasure of Ita Butrose AC OBE being my opening act at a conference in Hobart.
I have met hundreds of people in the last two to three years from all walks of life, many who also have dementia, but also lots who are carers, wives, husbands, partners, families and people who work in the fields of dementia and aged care.
Having Dementia Australia come into my life has made me feel worthwhile, it made me feel like I still had something to give.
I’d like people to know that even with a diagnosis, we still have so much to give. But to those who have a diagnosis or will get one in the future, I hope you are like me and find that you are not useless, and you have so much to offer. So don’t let anyone tell you to get your affairs in order, look for that thing that inspires you to stand your ground. Having dementia won’t make your life better, but it will change it.
In the end we are not looking for your sympathy, but we ask for your understanding and your support for us to continue to do what we want to do.
We thank Kevyn for sharing his story and for all that he does to improve the lives of people living with dementia.
No matter how you are impacted by dementia or who you are, Dementia Australia is here for you. Call us on 1800 100 500 to find out what support services we have available.
Photo credit: Allison Jess: ABC Goulburn Murray