helen'S STORY



Being a carer to a loved one with dementia, to me, is a Roller Coaster Ride. Nothing ever prepares you for when you are both told about a terminal dementia diagnosis. You feel your whole world is collapsing around you. My husband, Gordon, was diagnosed in 2005, aged 65, with Younger Onset Dementia. He had Fronto Temporal Dementia (FTD) with the variants of Semantic and Behavioural Dementia. He lost the meaning of the language and became mute; he also had challenging behavioural issues. It is one of the longest, slowest and challenging of the dementias. I was Gordon’s carer for 12 years, until he died in February 2017.

When I was thinking about talking about my experience here [my talk today], I realised the enormity of the subject. Everyone develops different strategies and we are all such different personalities, and have different relationships. And it messes with our emotions. One day everything is OK; the next, it is a nightmare. There are so many different elements to the dementia journey – from early diagnosis to transitioning into residential care, and end of life. Not one dementia is the same. Every aspect of decline and adjustment is a story in itself. Caring is different for everyone.

Before Gordon’s diagnosis, I had heard about dementia, but had no idea of the complexity of the disease. It was something ‘other’ people got, and something to do with the brain and memory loss. So, how does one cope with a diagnosis?

1. For me, I decided I needed to educate myself on managing the disease. I was fortunate to attend an intensive carer education programme to learn skills on managing FTD behavioural problems as part of a research programme. These were invaluable skills; I learnt to retrain my brain in order to manage Gordon.

2. A dementia diagnosis has a big impact on family and friends. You feel helpless. For me, the only way I could manage was to treat it as a project; dealing with the emotions on one hand, and the management of the disease on the other. Gordon couldn’t change, but I could. As far as he was concerned, there was nothing wrong with him. His common phrase was “it’s perfectly alright”. And his type of dementia needed to be managed differently to someone with Alzheimers Disease, which is a different type of memory loss.


the dementia carer's world









3. Also I would never have survived if I hadn’t firstly attended the Memory Loss Workshop at Dementia Australia NSW and subsequently joined a Support Group. I learnt from other family carers.

4. I had three goals; to make sure Gordon had the best possible life; for us both to enjoy a life together while we could; and for me to have a life, and remain healthy to be his carer and advocate. For me, I needed to turn a negative into something positive to share the 12 year dementia journey with Gordon. So I joined my local Probus Group, played tennis, and kept up my social life with friends and family as well as becoming an advocate for Dementia Australia NSW to make more people aware of dementia, and reduce the stigma.


One of the biggest difficulties was the fact that Gordon looked so healthy and normal. He had an invisible disease. I remember comparing myself with another carer whose husband had a visible disability and was in a wheel chair. We were both assisting our husbands to get onto a bus. Help was readily available for her as her husband’s problem was visible. But I had to explain my husband’s socially unacceptable behaviour. It is stressful. You walk on egg shells.

5. Then - the transition to a Care Facility was, one of the toughest experiences I had to adjust to. In my view, I believe family carers and paid carers within the Residential Care Facility need to understand each other’s roles to work together as a team, to get the best outcomes.

But you know, all through Gordon’s dementia, he still inspired me by his strength of character in coping with the complexities of his disease where he had some awareness, but could not communicate. Looking beyond the dementia symptoms, there was still a beautiful, gentle soul there, and soft eyes, which were saying ‘thank you to anyone who assisted him’.

I want to share a recent quote I saw about LIFE:       


It’s a journey – no one is ahead of you or behind you. You are not more ‘advanced’ or less enlightened. You are exactly where you need to be. It’s not a contest. It’s LIFE. We are ALL teachers, and we are ALL students.