Health

'A truly unique and terrible experience': What it’s like when your partner is diagnosed with dementia

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In 2015 Janet Kelly's husband Greg was diagnosed with young onset dementia at the age of 59. Transitioning from wife to carer was, uncertain and deeply personal.

Above: Watch the emotional story of Greg Kelly’s struggle with early onset dementia via SBS on Demand.

The road to Greg's diagnosis isn’t something I’d wish on anyone, but suffice it to say he suffered longer than he should have, through misdiagnosis after misdiagnosis, believing he was slowly going mad.

From the very beginning, the love between Greg and I required sacrifice. We both had been married previously, and each of us had two sons. Following our hearts required big leaps of faith, and it wasn’t an easy path – but we knew we had to be together.

Greg and I met in 1998. Greg was at the top of his game as an executive in the financial planning industry and I was just beginning my career in finance. His larger than life personality charmed everyone he met – and for years we worked on the same team. He was a generous mentor and championed those with whom he worked. He loved to see other people succeed, I loved that about him.

The admiration and respect we had for each other eventually grew into love. I’ll never forget the day – like so many other days before – when he rode up on his motorbike, in his leather jacket and black sunglasses, looking like a rock star… but for some reason this time it hit me like a ton of bricks: I love this man.

Anyone who’s ever attempted to blend a family knows it can be complicated and tough, our new family certainly had its ups and downs. But eventually we settled into a loving, supportive and close family. We embraced the messiness, we laughed through the tough patches – and anyone who knows Greg knows that these are skills he honed as a rough and tumble kid in Newcastle from a broken home. Greg experienced a lot of neglect as a kid, I think this just made him more loyal to the people he loved – which made all of us just love him more.

Life with Greg was fun. He demanded fun. Just when you thought you’d had enough fun, he wanted a little more. He was an adrenaline junkie and a thrill seeker – a competitive cyclist and amateur boxer, he rode motorbikes long before he was old enough to drive, he’d take on any challenge, any opportunity to push himself – whether it was bungee jumping or snowboarding – his enthusiasm was infectious, he brought all of us along for the ride. I felt grateful every day for my love story.

Then everything changed.

Greg was diagnosed with young onset dementia in 2015 at 59.

For Greg, the diagnosis was a relief. Greg was a fighter, and he finally knew who his opponent was. In spite of the devastating odds (dementia is a terminal disease, and the second highest cause of death in Australia) he thought he could get in the ring and knock its teeth out. Sometimes he even convinced us he could beat it – that somehow he would be the one to outrun this “bastard” as he called it – that’s how strong his inner conviction was.

He took his fight to the streets – founding ‘Kells Ride for the Future’ and pulled together a crew of fellow motorbike enthusiasts – they rode, loudly, through Australia and New Zealand raising awareness about young onset dementia.

One of his last missions was to Svendborg, Denmark – our journey was followed by the SBS Dateline team – where we explored the concept of a dementia village. We both left with the strong conviction that this is something Australia should adopt, and soon.

I was proud, of course, and supported these efforts, but where other people saw the defiant Greg, the boxer, the competitor, the winner… at home, behind closed doors, dementia was landing some hard punches.

I retired from my own thriving career to dedicate myself full time to the unpredictable timeline we suddenly both found ourselves at the mercy of. Greg would have liked me to say I dedicated myself to his “mission” – the mission to raise awareness, to find a cure – but the truth was I was dedicating myself to Greg’s care – and this was a bitter pill he resisted swallowing.

Greg and Janet Kelly dementia party
'The transition from wife to carer isn’t a straight line – it’s messy and uncertain and deeply personal'
Dateline

The truth is, I was his carer, whether he could face it or not – and it is to the other carers out there that I am writing this. Perhaps I am writing especially to the spouses of people with young onset dementia – for it is a truly unique and terrible experience. One of the things that Greg and I always agreed on when it came to our experience with dementia was that it was important to share our story, and it was important to share all of it, even the ugly truths. To be honest, all of the truths around young onset dementia are ugly.

Less than three weeks ago, we lost Greg to his dementia. It’s a loss that feels brand-new every morning I wake without him and every night when I fall asleep alone. But with dementia, the loss starts slowly and painfully, in bits and pieces, incrementally until one day you wake up and – while you still love your partner with the same loyalty and ferocity that you loved them in the beginning – you love them differently. The transition from wife to carer isn’t a straight line – it’s messy and uncertain and deeply personal.

Greg’s particular form of dementia was called fronto-temporal dementia, or FTD. This particular variant is often accompanied by drastic changes to behavior, to massive mood swings, to bouts of anger and even, sometimes, aggression. These are the realities we were facing in our home. This is the ugly truth we don’t talk about enough.

As Greg’s disease progressed – the hardest part, in retrospect, were the brief moments where he was the man he was when we fell in love. Sometimes he was back with me for a whole day, sometimes just a few hours, but there were moments when his charm, humor, flirtatiousness and cheekiness would just burst through and I could forget the nightmare we were living. But then it would come back – sometimes in small ways, like forgetting something or struggling with his speech – but sometimes in more damaging ways, like losing his temper or saying cruel things to those he loved most.

It’s hard to talk about these things, but Greg would want me to. Because Greg believed that the only way to raise the awareness needed to find a cure would be if people could really see what a horrible, heartbreaking disease this is.

Now, as I am trying to come to terms with the final loss, Greg’s death, I’ve come full circle. I am missing him today as his wife, his lover, his friend – I mourn for my husband, my protector, my partner, the love of my life. I have set aside the role of carer – but the experience of taking on that role will take time to heal from, I am going to need a lot of support.

If you know someone caring for a loved-one with dementia – particularly young onset dementia – I encourage you to gently press a little harder, to go beyond the simple ‘how are you’ – because take it from me, us carers are tough and we will tell you we’re OK even when we’re not. We might be scared to tell you that we’re struggling because we don’t want you to judge us because we aren’t the ones with the disease. But maybe ask again: Tell them you’ve got plenty of time to listen. Make them a cup of tea and tell them it’s OK if they’re not OK, because chances are, they’re not.

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