Real stories from Australia's craziest family.
SUNDAY , 19TH AUGUST 2018
When I was a kid and Mum was ridiculously famous, people always used to ask me the same question.
Over and over and over again they asked it, school kids and journalists and people in the street –
‘Tell me,’ they’d say, ‘What’s it like having Jeanne Little as your mother?’
for this blog 'moments in golden light'.
I would tell them the absolute, stone cold truth – it was hard!
YES she was like that all the time, she was so creative, so energetic, so LOUD!
'No one could be like that all the time,’ they’d say sceptically. Secretly I think they all suspected Mum was putting on an act, and they wanted to be part of the whole conspiracy. But the truth was even more shocking –
‘Yes, she’s like that ALL THE TIME!’ I’d say, and finally when their mouths had popped open in disbelief, I’d nail the last realisation into them –
‘YOU try being woken up for school by Jeanne Little every morning at 7am and see how YOU like it!
When Mum got sick I decided to write a memoir about the complicated amazing mess of my childhood and adolescence, with memories of the old Mum I grew up with who everyone loved, and to be honest, I’d always just taken for granted. I’d finally answer that question everyone had been asking me – ‘What’s it like to have Jeanne Little as your mother?’
But writing a book takes time, and now people were asking a new question – ‘What’s it like to loose her to Alzheimer’s?’
Unfortunately the answer I wanted to give – ‘Fucking shit house,’ didn’t cut it.
Ideally the book publisher probably just wanted a paragraph they could nicely package up with the book I’d written, journalists something to flesh out in a Sunday magazine article, but the answer was so much more complicated than a few sentences…
In interviews I could rehash a few shocking statistics, that dementia is now the second leading cause of death in Australia – if you’re a woman, it’s the first. 
But numbers only tell a tiny part of the story – in 2018 there are 425,416 people in Australia diagnosed with dementia; that's 425,416 families 'living with dementia'. We are one of those families. I went away to write what became the ending of my book, of the time I was an adult with children of my own, when I discovered I had to learn to grow up all over again.
September is Dementia Awareness Month. Every family’s experience of living with dementia is unique.
For us, Mum was diagnosed 12 years ago when she was 68; she’s been in care for ten years. It’s a weird, limbo place to be and there’s nothing I can do about it.
The old Mum would have turned in her grave to see herself like she is, but the life she is living now cannot be dismissed.
People always say, there’s a reason for everything, yet it’s hard to find a reason in this. Why my Mum, once so full of energy is now a body in a bed, unable to feed or bathe herself, unable to run or sew, unable to do anything but lie there and be dependent on others and that this will continue until her brain atrophies to the point where she can no longer swallow...
Thankfully I have my kids to keep me focused on the present. I've learnt from my children the gift of seeing Mum as she is now, to be at peace with that and not constantly compare her to the person she once was.
I cherish the memory of the old Mum and when I grieve it is only for the stinging realisation of that person missing out on the here and now – the moments she would have loved to share with us, the Christmasses and birthdays, the picnics and parties.
I refuse to live only in doom and gloom, life is too special for that. If you hear music that moves you, for god’s sake, get up and dance. If you find yourself at the ocean on a beautiful day, go swimming, even with your clothes on. Hold your children, kiss your partner, and tell your friends you love them. Because life is too short and sweet to hesitate even for a minute.
Mum used to sing this song by Jerry Herman, it’s a beautiful song and I can hear Mum’s voice singing it when I read the lyrics. I look at the person who lies there now, still my Mum, a light bulb dimmed to one thousandth of its usual wattage… She continues to live, Alzheimer’s continues to take.
I'll be here tomorrow
Alive and well and thriving
I'll be here tomorrow
It's simply called surviving
If before the dawn
This frugal world might crack
Someone's got to try to put the pieces back
So from beneath the rubble
You'll hear a little voice say
'Life is worth the trouble
Have you a better choice?'
So let the skeptics say
Tonight we're dead and gone
I'll be here tomorrow
Simply going on.
 Australian Bureau of Statistics (2017) Causes of Death, Australia, 2016 (cat. no. 3303.0)
My parents and colin brees visiting tom and I at our favourite place - playgroup, in 2007.
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