Early onset dementia – The personal story of love and loss between mother and daughter

2 October 2019|Lifestyle| Off Comments off on Early onset dementia – The personal story of love and loss between mother and daughter|

By Rhianna Woolnough*

SEPTEMBER was Dementia Awareness Month and for the 500,000 people living with dementia, 30,000 are living with early onset dementia.

Early onset dementia is the term used to describe those diagnosed with dementia under the age of 65 – and one of those is my Mum, Rhonda, who was diagnosed at 58 years of age.

For five years, I’ve watched Mum’s physical decline, loss of lifelong memories, social skills and emotional connection all of which are essential to the ‘mother-daughter bond’.

Prior to Mum’s diagnosis, our relationship wasn’t fantastic; being a careless 20-something-year-old came with the standard disagreements and (no surprise) fights.

The day Mum told me of her diagnosis – a Sunday afternoon in the garden – became a harsh reality check and our relationship was repaired instantly.

Mum was my focus thereafter – taking her on day trips, sleepovers and spoiling her with any coffee and cake we could buy.

We have since formed new memories that I truly cherish.

Mum fought hard, taking on new activities and joining social groups, all in effort to keep her mind ‘active’.

Unfortunately, the disease progressed and by age 61, she transitioned into a nursing home – the second youngest in her ward.

Mum has good and bad days.

Bad days see simple tasks become difficult – even the struggle to remember my name is apparent.

On the good days, I see her doing things she used to, such as dancing to David Bowie in the nursing home.

Nowadays, Mum struggles to venture outside the nursing home, plagued by forgetfulness, hallucinations, and maintaining conversations are now impossible.

I visit her and assist her with eating, brushing her hair or walking around the garden.

My love for her remains unchanged, but I have accepted she may not see milestones such as my university graduation, getting married or starting a family.

No one teaches you to be a young carer.

Juggling the intense decision-making about ongoing care, disability support or financial hurdles – not to mention having my own responsibilities.

The years have sapped my strength, and for a long time I was running on empty.

It’s taken a lot of self-care and a psychologist to get me to where I am today.

Dementia has no cure and the cause is not yet known.

However, the development of dementia-friendly communities gives those diagnosed a greater chance of remaining independent.

We know the importance of healthy eating, exercising and maintaining mental health, but we must now consider brain health.

So, what can you do?

Firstly, keep your cholesterol and blood pressure levels in check.

Secondly, focus on changing your lifestyle; non-smoking, avoiding sugar and eating a Mediterranean diet with oily fish, fruits and vegetables.

Lastly, challenge your brain – your brain thrives on new and challenging situations (e.g. learning a new language or social interaction).

Never stop learning.

With an ageing population and dementia now the second-leading cause of death in Australia, more awareness is needed.

If you missed Dementia Awareness Month or want to help, consider the Wicking Dementia Centre at Menzies, or take the free ‘Understanding Dementia’ MOOC course.

Your brain will find it stimulating.

*Rhianna Woolnough is a health advocate and is in her final year studying a Bachelor of Science (Health Promotion).

Caption: Rhianna Woolnough with her Mum, Rhonda, who was diagnosed with early onset dementia at the age of 58.

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About the Author: Glenorchy Gazette

The Glenorchy Gazette is your monthly community newspaper, reaching over 24,000 homes and businesses in the Glenorchy municipality. It is the product of Nicolas Turner, Justine Brazil, Ben Hope, Simon Andrews, Tobias Hinds and guest contributors, with support from advertisers.

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