A better year


I didn’t know it at the time, but one year ago almost to the day, my mum would be at my birthday celebrations for the final time.

Less than two months later, she broke her ankle while trying to “escape” from a respite facility, and seven weeks after that she went to live in a secure dementia ward, where she is as I write this.

The strange thing is, as I look back on the past year, I know it’s been a better year for me, and I think for my family, too.

In fact, for me, the past year has been better than any of the previous five. From the moment mum was diagnosed with Early Onset Alzheimer’s it seemed that our family’s world tipped on its axis and it stayed off-balance for the best part of half a decade.

As her condition worsened, and she disappeared from us day by day and piece by piece, my ability to cope with what was happening waxed and waned from so-so to shit-house.

For the first two years of mum’s illness, I got pissed a lot. Strangely that didn’t make anything better or change a solitary thing. For the longest time, I couldn’t talk about what was happening to her – and to us – without sobbing uncontrollably in some type of snot-infused premature bereavement. My inability to verbalise what I was feeling – grief – came out through my words in this blog and I am grateful that sometimes, back then, I chose to write, instead of drink, my pain away. Sometimes.

Then I decided that maybe my drinking wasn’t “normal” so I quit for 18 months. I understand now that my drinking at that stage probably wasn’t normal, but that didn’t make me a problem drinker. It made me a woman who was grieving her mum and who didn’t know how to feel the feels she was feeling.

Staying off the sauce, though, was mostly good because I learned how to face the worst thing that had ever happened to me – which was losing my mum, who was also one of my best friends, far too soon – without disappearing into the rabbit hole of a vodka bottle to make it all “go away”.

And then this year happened. By then I’d said goodbye to a bad relationship and a job that didn’t make me happy. Both of those decisions, I know, were partly informed by mum – it was if she was still guiding my hand even though she could no longer tell me what was the best thing for me to do.

Then mum never came home again after her accident and I had to learn how to visit her in an environment that I found so challenging I’d often be left in tears as I stumbled out of that long corridor into a sunlight I struggled to see.

But working for myself as a writer, from wherever and whenever, brought me so many adventures, so much freedom, and so much love (some of that love was only temporary but, man, what a temporary it was!) that after years of more shade than light in my life, the equilibrium started to tip back in my favour.

I wrote a movie and also learned to surf. And while mum might not have approved of my new obsession (I know my dad doesn’t), I’m sure she would’ve been out there watching me sooner rather than later if she could have.

In fact, I think surfing is possibly a gift from her, because her illness was part of the reason why I waded into the waves in the first place. It’s her life cut short which continues to make me try to live mine with everything that I’ve got. Perhaps that philosophy is her final gift to me.

So, I’ve learned how to visit mum and accept where she is and who she has become. I’ve learned that she is happy and safe and I’ve learned how to find joy in the simplest of things such as throwing a ball to each other or helping her to read the hands of the clock on her bedroom wall. And I think we’ve all learned how to breathe again.

So, as I turn 44 in a few days, I know that I’ve had a better year. It will be my first birthday without my mum at the celebration, but my dad, my step-parents, my brother and a small assortment of my crazy friends will be there to help me fill the void that she has left behind.

And I get the feeling that with a cracker-jack start like that, then next year will be an even better one for me – if only I remember to seize as many days as I possibly can.




The radical art of acceptance


I’ve learned over recent days about the art of radical acceptance. That is, when life is really a big stinking pile of poo but there’s nada you can do about it, well, you might as well suck it up princess.

According to experts, radical acceptance is about accepting life on life’s terms and not resisting what you can’t, or choose not to, change. Unfortunately, I learned about this philosophy a few days after I really needed it, but better late than never I guess, right?

I’ve always thought I was a bit of a radical. You know, living life outside the mainstream, being hip and cool and all that crap. At one stage, many moons ago, I was probably even living on the edge. Nowadays the closest I come to an edge is when I cut myself shaving. Oh, the non-stop thrills of being in your 40s. At least I have oodles of anecdotes from my misspent youth – and my 20s and 30s for that matter – to reminisce about when I get bored with myself.

Another ‘awesome’ thing about getting older is that more people that you’ve known and loved die. My aunty passed away a few weeks ago after a brave battle with cancer. Although I wasn’t able to attend her funeral, her passing, while expected, was the first on that side of my family, which seems to have shifted the familial axis into unfamiliar territory.

I guess if we live long enough then we better also learn how to say goodbye. Such a thought doesn’t make my heart sing with anything like joy, which is were radical acceptance comes in. Those of you who know me personally, or read this blog, know that my family is entering the sixth year or so of our mum living with Alzheimer’s. Her deterioration over the past six months has been heartbreaking and recently we moved into a new realm with mum spending time in a secure dementia respite centre.

Going to visit her all by myself while I was also trying out that 500 calorie a day diet, in hindsight, was a rather massive mistake. Not only was I starving, but the experience of seeing mum in such a place, with people “much worse than her”, was nothing short of traumatic. Mum, however, seemed to be enjoying herself (which is the main thing) and she also didn’t seem to notice the many strange goings-on that made me want to run out of that place, with her secreted under my coat, never to return, which would be no good for her or for me. For days afterwards, my brain just couldn’t process what I’d seen and also what the future for our mum, and for us, now holds. And you know what? There was nothing whatsoever I could do about it.

No matter how much my mind raged throughout the following days and nights about the big shit sandwich that our family was in, nothing would ever change the outcome. To put it bluntly, mum will end up in a dementia facility full-time and we’ll end up visiting her there and then one day it won’t make any difference to her whether we come to see her or not because she’ll no longer know who we are. Even my fingers got depressed writing that sentence.

After four days of self-induced anxiety and mental trauma, my grief counsellor taught me about something called radical acceptance. None of my unhelpful brain gymnastics would change the situation, she said. In fact, all that that over-thinking would do, she told me, was make me even sadder and possibly lead to a full-time reinstatement of a bunch of harmful behaviours that I’ve done a damn fine job of mastering.

So, it seems my radical days may not be behind me after all, because I now understand that to accept, albeit reluctantly, the harsh reality of the cards we’ve been dealt is the only way to proceed. That’s life isn’t it? Anything else will just mean more tears and heartache and bad decisions and there’s already been enough of that for two lifetimes.

The dying of the light


While I’ve never been known for fits of melancholy, I’ve been doing some unhelpful dwelling about death of late.

Like so many before me, including some of my friends and cousins, when you’re watching a loved one embark on their final journey you often start to consider your own mortality at the very same time. And that’s a double dose of depressing.

The ebb and flow of life, and the people you encounter in it, means I’ve already been to more funerals than a trainee undertaker. But, thankfully, not since my grandparents died more than 20 years ago, I haven’t been to one that’s an immediate family member.

And hopefully I won’t for some time yet but as Alzheimer’s continues to rob our mum of any twilight years whatsoever, from time to time I have to admit that melancholy does settle uncomfortably within my bones.

They say losing someone to Alzheimer’s can be one of the toughest losses to endure. Not only does that person often not understand what’s happening to them – and in our case why the majority of her friends have deserted her because it upsets them to see her so afflicted (cowards)­ – but the system we have learned provides very little help either.

Until very recently, we were totally at sea, struggling to decipher the spaghetti-like mess that is Australia’s social services. All the while not one medical practitioner was providing continuity of care, or salient advice, so we relied on our gut instincts and whatever would minimise mum’s levels of confusion and discomfort.

For her own, and other’s safety, we also had to stop her driving, when as far as she was concerned there was nothing wrong with her at all. In mum’s reality everything is totally fine. If someone told you that you couldn’t drive anymore, how would you react? Well, mum reacted in exactly the same indignant way, but thankfully her carer and husband holds his nerve and comes up with evermore creative strategies so she can’t find the car keys.

Lately she’s having delusions and thinks she grew up in England. She also is adamant that the people in the telly can see her. And a bit like with small children, we struggle with how to respond to these imagined issues when she will never understand the answers that we give. In the grand scheme of things, as long as she’s not hurting herself or others, I suppose what harm can it be to go along with some of her more preposterous and fanciful suggestions?

All of these challenges, we face day by day and thankfully, soon, help will be at hand. My step-father has done an amazing job in what can only be described as utterly soul-destroying circumstances as he watched his partner of some 35 years change into someone we mostly don’t recognise. Yet she remains his wife and she remains our mother even if she is nothing like who she used to be.

Over the past six months, both my brother and I have met two awesome men who each have equal parts strength and softness. Sometimes I wonder if they’re guardian angels sent by God to help us as we rage against the dying of our mum’s light. And it’s a heartbreaking juxtaposition that we’re both embarking on wondrous new lives of own as our mother’s slips permanently away from us.

Mum no longer recognises her nieces and nephews. One day far too soon she will no longer recognise us either. And yet we will continue to love her for everything that went before and for all the memories of her that will remain for years after. Her light will linger long after she has gone. That’s one of the few things of which I am certain.