This is the first post in our new series Living with Dementia – Notes from the front line. We will have regular contributions from some of our Dementia Advocates, as well as guest posts.
Hi, my name is Trevor Crosby. I’m 66-years-old old and I live in Sydney with my wife, Jill. I was diagnosed with younger onset Lewy Body Dementia in late 2014.
How do I feel now, more than 12 months on from my diagnosis? It has been a really busy year getting up to speed with what dementia really means to me; becoming a Dementia Advocate and going hard at Alzheimer’s Australia NSW advocacy work, being geed up about the results of this work and enjoying the activities that came from participating in the Living with Dementia program.
How far ahead am I from people I know still in denial of their early onset? I am so frustrated that I and others can’t reach these people and set them on the education trail that will lift their quality of life from low to something meaningful. Further frustration exists – even if we could reach these people, would there be sufficient programs to cater for them? I fear the answer is no.
Now back to me and the question, ‘How do I feel now?’ Frustrated, for sure, as stated, but more than that – being lucky enough to come through year one with so many benefits, such as sharing my feelings with others in the same boat, doing things that make me happy, having a better understanding between friends and family.
When I was initially diagnosed with dementia, I choked, I cried, all my defences had been smashed. I felt helpless, pathetic. “I’m going to die,” I said.
I have always been a very fit, active contributing member to society. My wife and I ran a farm in rural NSW, along with two other businesses, for more than three decades. I was a long-serving member of a committee that manages water resources in central NSW, was an active member of my local golf club, even serving as president of the club for three years and was a keen supporter of the Primary Club in rural NSW for many years.
Having Jill beside me helped tremendously in handling my diagnosis. I became strong enough to ask the hard questions: “how long do I have to live?”, “how many quality years?”. The answers didn’t please me, but I believe a positive and optimistic attitude can delay the inevitable.
The medication I have been prescribed has had an enormous impact on me. It has put me in a better place than where I was – clearer thinking, better memory retention, better social ability and more. It comes with some side effects, but in my case nothing serious enough to talk about.
The diagnosis has impacted me in many ways. I miss the ability to read books. My concentration levels have worsened. Compiling this piece took an extremely long time, with several breaks.
There is no getting away from dementia. It is a cruel, ugly killer lurking in the shadows of my life. It destroys the very fabric of humanity – the brain. Astoundingly, there is still a lack of understanding in the community of what dementia really is, which is frustrating.
Yet there are good things that have come into my life as a result of the diagnosis. It has helped me face the evil monster and seek out the true priorities in life. I’m a better person because of that.
I make time for my true friends and doing those things that make me happy: spending time with family and caring, dear friends; golf; cricket; yoga; keeping fit; eating well; and speaking out about dementia and letting people know there is no shame in having a diagnosis.
I obtained the best medical advice and I enjoy life and focus on staying positive. I also strongly believe in the mantra “do it and do it now” – don’t put off the things you want to do in life.
Life is an emotional rollercoaster. It has required certain levels of bravery and committed management to ensure the appropriate direction is maintained. I want to get the most out of life by focusing on making tomorrow the best day of my life.
Hi Trevor, It is me again Leone Tuckett (Barry-Cotter). I been thinking of you a lot and wondering how you are. The article you wrote is wonder ful and typical if you you still sound like the same kind, caring and brave person I met in 1973. You were a wonderful Friend to a very homesick 21 year old who had just been married and moved from WA. So sad we have lost touch. If there is any possibility of hearing from you I would love it. Leone
Hi, I remember you and your family from your Central West years, and your commitment to correctly managing water resources. I can't imagine a better advocate for people to have an enhanced quality of life, while being diagnosed with dementia. I have worked in Aged Care for a very long time, now live and work in the Far North Coast and would love to have you speak at one of my staff meetings, if you are ever up this way.
Hi Trevor, Meeting you and Jill at the Living with Memory Loss program and seeing what you are doing with your Advocacy was an inspiration to us all. Keep up the great work.
Thank you for sharing your story. What a tough diagnosis you had to receive but just talking about your journey will assist people to understand dementia better.
Can I ask which medication, you take?
Trevor.. What a wonderful thing you are doing in sharing your journey. My husband was diagnosed with LBD 2007 after initially being told he had Parkinson's. Knowledge is power. I researched, joined support groups & attended every possible seminar we could. This made our journey more understanding & accepting. We knew time was limited so decided to make the most of it.. I took my beautiful husband on the journey of his life. We travelled around Australia in a motor home with myself behind the wheel!! This is what kept him alive & motivated. We lost the battle 7 years in but we made the most of everyday. Keep active, keep moving, keel stimulated & stay positive. Look forward to following your journey.. Kind regards. Kerri
Interesting reading your story Trevor, but what happens when you have early onset dementia with slow progression. I have been caring for someone now into their eleventh year since diagnosis. One's friends are no interested in a an old friendship. Your circle becomes smaller and any help needs to be purchased. It becomes a very isolated life. I can assure you. All the best with your journey Trevor and Sue.
I am very interested in this theme. I am working at Aged Care with residents with different types of dementia. Most of them are already in a later stage of dementia. It breaks my heart, how some persons treat these people without understanding. I wished, there was more dialogue and that is, why i am so interested in this forum. Thank you for doing this!
Hi Trevor what an inspiration to people suffering this awful disease, I work in aged care home nursing and I look after a couple of beautiful clients with dementia your right it's a hard road but if you have family and community support its a great help I try to make all my visits count and just be in the moment with them and there family ?
Thank you Trevor for sharing your journey with us. It helps people like me to look ahead with a more positive attitude. I have been watching over, and helping care for, my mum with Akzheimers for over 10 years now and have now been diagnosed with same. It is a very difficult diagnosis to deal with. I am devastated...your input is so helpful; thank you.
Hi I love reading your story, I myself have been diagnosed with frontal lobe Dementia two years ago and I was only 54 my family have a heredadge link to this all my siblings have a 50% chance of having it so far 4 out of 7 have been tested with 3 of us positive my oldest Brother is 63 and in a nursing home, I have just started to show simitens so it's very scary All the best to you Trevor Sue
Thank you Trevor for sharing your story. I am always in awe of the way everyone deals with the dementia diagnosis and it is certainly inspirational to read how you have dealt with the card dealt out to you. Continue to enjoy your life to the fullest. All best, Helen