I noticed his personality changing first. You always think of dementia as memory loss, but with John* it was a very big change in the way he thinks.
All of a sudden, he wanted to leave work and do something different, go on another career path. Unbeknownst to me, he wasn’t coping at work. He wasn’t coping with things that, 12 months prior, he coped with very easily.
I sat down with him and said, “What’s going on? What are you feeling?” and he said, “It’s like I’m in a fog.”
The first thing you ask yourself is, “What am I going to face? What is the future going to hold for us?”
I felt I always had someone on the other end of the line with Dementia Australia, someone to talk to, someone that knew what we were going to face and what the future might hold for us – and what services were available.
That gave me a sense of “OK, there is someone that is going to be there for us as we go through the stages.”
Unfortunately, we weren’t given that initially at our specialist appointment. When we were given the diagnosis, they did not say “here are the services”, but this seems to be a common story.
When you’re given the diagnosis, you’re told to get your affairs in order, go and get a bucket list – this is it. That’s essentially what sent John into depression. He thought ‘this is it, I’m dying’, but the more you research and the more we get along in this journey, it’s not the case.
The beginning of our journey would have been very different if the diagnosis was delivered in a different way. The specialist should say, “Here’s Dementia Australia’s number go and ring them”. They’ve got all the services, they’ve got the support, you can speak to someone on the end of the line at any time.
Life isn’t over. For those that are thinking that maybe there’s something wrong, get that diagnosis as soon as you can because as soon as you get that diagnosis then you can get that support in place and you can think about the future ahead.
Once you get over the initial diagnosis there’s a lot of life to lead. Get that support around you and keep on living life surrounded by family and friends as much as you can. Get that support when you need it, don’t suffer alone.
Contact Dementia Australia as soon as you can. The initial days are a blur but when you can, contact Dementia Australia because the support there is amazing. They will tell you a lot of information and you can put it all aside for when you’re ready.
Get a plan in place and go from there and take each day as it comes. Live each day to the fullest. That’s the best advice I can give.
*Names have been changed to respect privacy.