" Dementia Advocate Jay Dave shared her story with attendees during our Dementia Action Week launch event at Sydney Opera House. "
Family story shared by Dementia Advocate

Dementia Advocate Jay Dave is an experienced Materials Engineer and Project Manager who lives in Sydney with her family. Jay’s father Madhu was diagnosed with younger onset dementia at the age of 58.

Having been involved with Dementia Australia’s advocacy work in a number of ways, Jay recently shared her story with attendees during our Dementia Action Week launch event at Sydney Opera House. Below is an overview of Jay’s presentation.

“Hello Everyone? Welcome … smile!

WOW. This is just epic. I still can’t believe I’m standing here in our iconic Sydney Opera House … and isn’t this launch of Dementia Action Week fantastic?

It is such an honour to be here on behalf of all Australians impacted by dementia. The theme of this week, Dementia Doesn’t Discriminate. Do you?, is very powerful.

I believe all people whose lives have been affected by dementia experience some form of isolation and social exclusion, and there are statistics to back this up. Sadly, this experience happens at a time in their lives when they need support and social engagement more than ever.

Growing up I have the fondest memories of my Dad. He was just the coolest, smartest, kindest guy you could ever meet. We did so many things together. We fixed cars, we built stuff in our garage, we grew veggies in our garden, and we made beer together, much to my mother’s dismay!

My family is very ordinary, or extraordinary depending on how you look at it. Mum and Dad were happily married for 34 years. Mum works in finance, Dad was an electrical engineer, my younger brother is an environmental scientist, and I’m a materials engineer. In our house, everything worked like clockwork and we overcame every challenge together. We all cared about each other and argued the normal amount. That’s love, isn’t it?

Slowly and without anyone noticing, things began to change ever so subtly. My Mum would call me and explain that Dad was constantly forgetting social engagements they’d agreed to attend together such as parties and weddings, leading to arguments. In addition to this, during functions he would often ask family members to remind him of the names of familiar guests.

I wrote it off as depression and told everyone just to relax and be supportive, saying I was sure everything would be alright. That is until one day when everything changed.

After spending a whole day doing countless gruelling tests, we were finally in a waiting room impatiently anticipating the doctor to come in with the results. I cannot describe the feeling that overwhelms you when you hear the words, “your father is terminally ill – he has younger onset dementia.”

As my family and I started wading through the instant grief, many thoughts crossed my mind. This was a high functioning man that we all looked up to. My hero. My best friend. The purest and most caring person. He was still a young man. What about him? What about his travel, retirement plans and dreams? There were so many questions, and so much uncertainty.

Dementia doesn’t discriminate. It affects people from all ages and any background. My dad was just 58 when we got this diagnosis.

Imagine going from being someone’s daughter to being someone’s carer overnight. What followed for me was the feeling of being on the back foot, and not knowing what was going to change from one day to the next. Being a carer is a fulfilling, heart-warming, noble role. However, it is profoundly underestimated just how much burden lies with a carer. It is very isolating and demanding.

The day-to-day frustration and agony around hoarding, showering, eating, medicines, going places and shopping could get quite tricky as Dad’s confusion and fatigue worsened. In my usual style, I approached each task with logic and results that were often hit and miss.

Dad found himself being overlooked to be a part of his favourite activities such socialising or having a beer, and people began treating him like someone who was not even able to have a conversation and therefore started to exclude him. But dementia is a disease like any other. Even if we can’t help someone physically, we must still talk to them with love and respect.

With dementia, you start with someone you know and watch them change so much. Dementia is this terminal disease that slowly robs you of the person standing in front of you. It changes both your life and theirs.

With dementia, there is still a person who wants to be included and treated with love and respect. It is therefore unacceptable that people dealing with these already difficult circumstances face discrimination in what should be an inclusive society.

This is just the tip of the iceberg of the various issues people affected by dementia face on a day-to-day basis. All I can say now is that no matter how difficult it was I am forever grateful for the time I got to spend with my Dad.

As a Dementia Advocate I feel that it’s so important to share whatever skills and experiences we have to make important changes and quantum leaps forward in the support we provide for people living with dementia, their carers and families.

I would like everyone to understand that it can be isolating for everyone, not just the person living with dementia but also for the carer, and whole family.

The one thing I hope you can take away from today is that everyone living with these circumstances need more support, companionship and compassion.”

 Posted: October 16th, 2019
Discussion

Lucy van Kessel said:

Thanks for this inspiring and helpful article.

Marion Cohen said:

Couldn't agree more, Jay. I am a Registered Nurse and have managed both community and residential care. Many clients had dementia - the youngest was 34 years old. It is isolating because many people are uneducated in how to cope with conversing with someone who has dementia. The diagnosis is frightening enough but the slow progression towards the end is heartbreaking. Hopefully one day a cure (or prevention) will be found for at least some of the dementias.

Janine & Lindy Saines said:

I am sorry missed this event. My sister and I can relate very much to the words of Jay, “‘This disease slowly robs you of the person of the person standing in front of you”. It changes both your lives & theirs” We cherish the golden moments when we take our Mum out on an adventure out on our weekend visits, but there are times you have to say bye, and will there ever be a time the tears will stop! We feel the isolation, in a sweet country town were our family life growing up was so so so good. Mum’s disease progressed rapidly after losing her two son’s with cancer one year & two days apart, the words she found hard, you just have to get over it! At 82 my Mum went to counselling, we as sister,s were her counsellor,’s too, but this was not enough! We are 3 strong ladies & there is much that needs to be done for this isolating disease.

Liz Fleet said:

Well spoken and so very true. My dear Mum passed away in May at 95 after 20 years of this horrible horrible disease. I, too am so grateful for the good times and memories I have of her happy and lucid times.

Jan Ferguson said:

What an inspiring conversation to read. I looked after my mother for ten years most of which she did not know me but told me I was a good nurse and would I come back. I like you absolutely relish the time I had with Mum we had many laughs and even though she didn't know me there was a connection. Keep up the good informative conversation.

maria said:

thanks for sharing your story. my husband was also diagnosed at 58 and it was just as devastating for our family. He was excluded in social situations and friends started to withdraw. Its a lonely and difficult journey that we all travel on. My beautiful husband is in care now, and we as a family are still and will forever grieve the loss of a funny and vibrant man who no longer shares our day to day life.

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