Dementia Advocate Marina Germolus shares her journey with dementia

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Marina Germolus with her arm around another lady at an event with people in the background

It was 2012, when my son came to visit. He noticed something was wrong. He commented about my once incredible memory and how I now couldn’t remember what we talked about the week before. Together, we saw a doctor. Tests showed nothing was wrong. Four years later in 2016, an MRI revealed dementia.

That was the beginning of my dementia journey. The first thing I did was visit my father who lives in residential care in Sydney. He also has dementia. I told him about my diagnosis. He looked at me and said, ‘I am sorry’. But of course, it was not his fault.

I have an optimistic view on life which has been brilliant. I’ve worked for both the Federal and State Governments my entire life and I’ve travelled Australia.

I’m retired now and I think part of the reason I have been doing so well is because of process and routine. It’s the ex-auditor in me! I get up, make the bed, have a shower, get dressed and have breakfast. It helps me to maintain my equilibrium.

I have travelled practically every river cruise in Europe and have even been to the North Pole. I recently went to Iceland, with my son and his wife. I often get lost but think to myself – enjoy the moment before you get found again. Someone will find you. I talk to people out and about and feel lucky with the people I have met along the way, both before and after I was diagnosed.

The only thing is, dementia takes you to a place you didn’t expect to go. You walk out of the bedroom and into the kitchen with no recollection of why you’re there. I forget what I had for breakfast but I remember what I did 35 years ago.

My plans to retire in the mountains in Tasmania are no longer possible and that makes me feel disappointed.  Soon, I will move into a retirement village and I feel disappointed that I will eventually be dependent on someone else. I know I will reach a point of no return.  But, I’ll be 72 in April and I still believe I have a degree of longevity based on my genes. My mother, who also had dementia, died at 89 and my father is in his 90s.

What worries me is what happens to the people who can’t afford to go to aged care because it is expensive. I think society can have a lack of respect for older people and all we have contributed throughout our lives.

At the end of the day, we all end up in the same place. In the meantime, be kind to your family and friends, respect the people around you. On this journey humour is very important – it’s key to helping people realise things are okay.

I believe it is important for people to know that dementia is a medical condition that develops for a number of reasons.

I always say to have empathy, but not sympathy. Nobody wants to have sympathy, but to be empathetic makes the world of difference.