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Travels with dementia - the beginning

August 23, 2017

 

January 2011. In northern Queensland, an inland tsunami had unleashed its fury on towns and valleys, killing dozens of people and destroying countless lives.

In the Royal North Shore hospital in Sydney, I sat by my father’s bedside tapping out the story of the tsunami for The Times of London. It was a demand from my editors in the UK, but it was also a way to quiet my mind, to still the fear that, two years after losing my beloved mother, we were also about to watch dad pass from us.

The drama of that night started innocently enough; like the first drops of rain that turned into the hellish downpour in Queensland, ours started with a routine blood test. A couple of days after that test, the GP had called me over to say it ‘wasn’t urgent’ but we should get dad back to her as soon as possible.

Once in her office, we realised this visit was very urgent. Dad was rushed to hospital; he had advanced prostate cancer but, more urgenlty, his haemoglobin count was so low he was literally on the brink of death; without a transfusion he would likely die that night. In hospital, the doctors told us the shock of the transfusion would probably kill my then 86 year old father. It didn’t, but he needed another three before he began to stabilise. Looking at his medical notes, we also realised that dad’s cancer had metastasised to the bones.

We were looking at a few months, if we were lucky, the doctors said.

That night, as we sat by his hospital bed, I and my husband John, and my sisters Nikki and Prue  accepted that if he survived until morning we would have to take responsibility for his care. We drew up a roster that, for months, meant one of us being with him 24 hours a day – a huge task given we all had demanding jobs. He was so weak, he had to be helped on and off the loo and we  hardly slept for months because whoever was on Dad Watch, as we call it, had to be alert throughout the night to help him if he needed the bathroom; we were terrified he would fall and die while we slept.

The doctors had been so pessimistic about Dad’s prognosis we thought we were only helping him toward a peaceful death at home. But today, six years on, he’s still here, thanks to a new treatment for prostate cancer and his own stubborn determination.

​But while his body fights on, his once brilliant mind is steadily crumbling and although he no longer needs 24-hour care, he is incapable of looking after himself. In January 2016 John and I decided to move him in with us and our dog Luca.  Dad loves Luca, whose antics keep him smiling.

 

 

But, still, we witness daily the tragedy of a man who once explained the theory of black holes as easily as explaining the weather but who now struggles to comprehend the simplest of concepts. We have learnt to be patient when he asks the same question over and over again or forgets what he is doing.

Sometimes, too, he forgets who we are. “I’d like you to meet my daughter,” he says. “You remind me a bit of her.”

At times, his old lucidity breaks through and we glimpse the irrepressible father we adored when we were growing up. But these increasingly rare times come  with their own tragedy – when the lucidity begins to ebb again, Dad knows what is happening, and you can see the terror and the sorrow in his eyes.

But there are many happy times. Like many elderly people his long-term memory has remained intact. We spend happy hours back in his childhood in London’s East End and in his larrikin bachelor days in the Royal Navy. Four years ago we took him home to England for a final visit and one evening, after spending the day at Walmer, in Kent, where he used to spend his childhood summers in the shadow of the Dover cliffs, he brought a chic London restaurant to a standstill by singing softly, and with tears pouring down his face, The White Cliffs of Dover.

Although he remembers nothing of that trip now, we hope a few memories remain. We have developed a mantra: “Joy in the moment.” As long as Dad is happy from minute to minute, we hope that the feeling of contentment will last after he has forgotten where he’s been or what he had done. So we take him sailing on our little yacht and he gazes happily out to sea, gripping a glass of wine and talking about the boats he and Mum owned when they lived in NZ. We take him on long drives and talk about his travels with our mother. On his 88th birthday we took him whale watching, and were delighted when, hours later, he could still remember seeing a whale breach.

So despite its challenges this journey has happiness and laughter. And quite a lot of whisky.

 

 

 

 

 

 

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