" I always say to have empathy, but not sympathy. Nobody wants to have sympathy, but to be empathetic makes the world of difference. "
Thoughts from a Dementia Advocate

Dementia Advocate Marina Germolus who is living with dementia, has shared her journey with us.

“It was 2012 when my son came to visit and said there was something wrong. He spoke about how I used to have an incredible memory and now I couldn’t remember what we talked about the week before. At the time I thought I would go along with what he wanted to do. We went and saw a doctor for some tests. I remember having to draw pictures of houses, cars and people. The tests came back not showing anything wrong.

Down the track, my son again insisted something was not right. He took me to see a geriatrician in 2016 and I did the same tests. Again, they were fine. The geriatrician then did an MRI scan and there it was: dementia. That was the beginning of my dementia journey. The first thing I did was go and see my father in Sydney. He is in an aged care facility there and also has dementia. I told him what had happened and he looked at me and said ‘I am sorry’. But of course, it was not his fault. He then pointed to my hair as he couldn’t understand why it was red!

I have an optimistic view on life. I can honestly say, I have had a brilliant life. I’m retired now, but I have worked for both the Federal and State Governments. This includes the Department of Defence in Sydney, and the then newly created Aboriginal Affairs Department in Perth. I travelled all around Australia for this job and the places I have seen are just incredible.

I think the reason I have been doing so well has a lot to do with process. I live by process, that’s the ex-auditor in me! I get up, I make the bed, I have a shower, I get dressed, I have breakfast. I think it helps me to maintain my equilibrium. I notice every little change and this is what is keeping me on track.

I have travelled just about every river cruise in Europe. I have even been to the North Pole. I recently went to Iceland with my son and his wife.  I often get lost, however I think if you are lost, enjoy the moment before you get found again. I think people find me very approachable, and I often talk to people when I’m out and about. I 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 come out of the bedroom and you stand in the kitchen, and you think, what did I come in here for? I forget what I had for breakfast but I remember what I did 35 years ago. I was going to retire to the mountains in Tasmania. None of that is possible now. And that is the part that makes me feel disappointed.

I’m going into a retirement village soon. I feel disappointed I will eventually have to be looked after by someone else. I know I am going to reach, what I call, a point of no return. But I’m turning 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, you are kind to your friends and relatives, and you respect the people around you. On this journey humour is very important. I think it’s the key thing that makes people realise things are okay. It brings an equaliser into the room.

I believe it is important for people to know that dementia is not catching. It is a medical condition that you get for a variety 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.”

The two pieces of artwork below were created by Marina. “Confusion” represents the confusion of walking into a room and not knowing why you went in there, and “Peace” represents sitting among the trees and coming to acceptance. The two artworks go together to represent a journey of one step at a time.

 

 

 Posted: March 26th, 2019
Discussion

Anne Tudor said:

Thank you for sharing, Marina. You remind me so much of my Edie - practical, thoughtful, sensible, uncomplicated, considered, unflappable, reliable, positive & capable. Your attitude will take you far & wade the way ahead. We wish you all you wish for yourself. Hi well..

Robyn Collins said:

Marina's story is so very insightful. It enables us to realise and accept that this can happen to anyone from all walks of life, even the well educated and world wise amongst us. I admire Marina's ability to reflect on any given situation and enjoy living in the moment of it eg when she is lost. My husband has recently embarked on this journey and while I've worked in aged care for much of the last 30 years, I feel ill equipped to manage the situation adequately and effectively for his optimal wellbeing. It's a little Le different when it becomes personal. It becomes my story also.I love my husband dearly and want him to continue to enjoy day to day experiences in a positive way which enables him to make choices that are acknowledged and respected by others including future carers. It won't be an easy road ahead but at least we will breast it together!

Danijela Hlis said:

Dear Marina, thank you so much for sharing your story. I congratulate you on your positive and affirmative approach. I would be very grateful if one day you could send me an e mail and tell me what YOU were feeling and thinking in the early stages, as you mention it was your son who kept on saying something was not right. Warm wishes to you from another dementia advocate of many years, Danijela.

lesley said:

that story is very beautifully told,best wishes

John Boyce said:

How good to see that someone who understands the problems that we dementia sufferers have also has the skills to express them in an easily understood manner. As a current sufferer - but only since a year ago - I still find that few of the people you spend time with understand your problem - and particularly that it is something over which you have absolutely no control.

June said:

Thankyou Marina, for explaining how you came to know Dementia personally. Everyone's story is different but each has something worthwhile to teach us. I appreciate your desire for empathy and not sympathy. I'll remember that.

Gail Gould said:

What a great attitude. Thank you for sharing your story.

Add a comment:

Call the National Dementia Helpline: 1800 100 500