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Making Lemonade #14: What came first, the lemon or the seed?

Alzheimer’s, my grandmother, my mother, and me

Cross-posted from SubstackView original post

This surprise essay is a musing on love, grief, and dementia. It’s not quite like my usual stuff, but when I sat down to write, it just poured out of me and I wanted to share it in case it has value to anyone else.

I know everyone’s experience of dementia is different, and that some people are better at handling it than me, and I envy them, but I’m trying the best I can and I guess that’s all any of us can do, really.


I definitely feel like I’m in my wintering season (Dwellingup, WA, June 2021)

There’s a pervading belief that the human body replaces every single cell every seven years and that therefore, the version of you reading this is made of entirely different elements to the you of 2016/17.

It’s a nice idea, but it isn’t exactly true. Like the Earth, which keeps spinning, no matter what, the body is always in motion, our cells following lifecycles of their own. Some, like ovarian eggs, stay with us for almost a lifetime. They’re grown in utero, meaning the eggs that made us grew inside our birth mothers while they were in our grandmother’s wombs.

I’ve always loved that idea – the passing down of life through the generations. Just like I love the idea that my body is in flux. That the things I think of as myself are constantly changing, and that my body is hard at work to heal parts that are broken; always growing and evolving.

And yet, in the same way, during these in-between days, both in terms of the season and in terms of the heavy fog of young-onset dementia that has descended upon my life these last few years, I seem to find myself unravelling. 

The stitches holding the stories of my life together, like cells in a body or squares on a patchwork quilt, becoming unpicked.

We are all made up of stories, but each year these stories change. The pages of our lives get reordered, moved around, shifted. Inevitably, some get lost in the shake-up. Especially if there’s a big shake-up.

Nothing ever stays the same. Even when we wish it would.


Back in happier days (Kent, UK, Feb 2018)

Today is my mum’s 63rd birthday.

Not that she knows it, not really. For her, it’s just another day, but maybe with some cake and some candles. Last year, my brother told me she tried to put BBQ sauce on her birthday cake. She loves BBQ sauce.

Before, she hated BBQ sauce and loved olives. Now, it’s the other way around.

It’s interesting all the things people don’t tell you about dementia, like how tastebuds change. All the things you have to re-learn about the person you once knew better than almost anyone else.

The gift of life passed down from her and my grandma feels as much a present as a purgatory these days; not really like a ticking time bomb that lurks in the atoms of my own being (although it’s distinctly possible it does), but one that exploded a few years ago, scattering shrapnel into every aspect of our lives.

Of the three of us, one is now gone – despite having kicked up the biggest, tear-up-the-world-and-this-entire-family stink beforehand – one of us is between here and who-knows-where, and one of us is… Well, I also don’t even know what – or who – I am, these days, but I’m figuring it out.

Picking up the threads and piecing myself back together, stitch by stitch.

***

People seem to have a bunch of sayings stored up their sleeve for such occasions. Things like “things fall apart to get better”, but really, they’re all just lip service.

Even though grief is one of the main definers of a life that never was meant to last forever, we still don’t know what to say to people when they’re grieving. When they’re suffering and in pain. 

I’m the same, though.

I’ve been using my words to make a living for the last ten years or so (longer, if you count using them to sell as a travel agent, too), but I still don’t know what to say to people going through hard times.

It’s been years and I don’t know what to say to myself, or my family.

All I’ve got is “I’m here” and “I love you”, even though I’m not there. I’m thousands of miles away in Australia, trying to build a life and a career and yet, still trying to hold things together for all of them and for myself, as the eldest daughter should

Even though she used to tell me how abandoned she felt by me after I left the UK, my mother taught me in her image. It was the same for her and her parents, especially after her sister took her own life.

My grandma used to tell me that my mum never cried after her younger sister died, and that she was more upset that my aunt abandoned her to deal with the fallout, all on her own. I never asked my mum what she thought about it. It seemed too painful, like pushing on a bone-deep bruise.

And so, although I’m not actually there, dutifully, I show up. Calling her week after week. For years, it was every day, but that’s become too much for her – and me. So now, it’s every Tuesday and Friday, bridging the gap between her activities, an hour of stilted, one-sided conversation at a time.


One of the last times I saw my mum before her diagnosis – and the COVID lockdown (London, Dec 2018)

For me, the last few years have felt a bit like being stuck in a neverending storm at sea.

Every time it finally felt like there was a gap in the rain, another wave crashed in and swept me off my feet. And then Alzheimer’s whirled in like a hurricane, tearing up everything I thought I knew, wrecking my boat on some rocks, and leaving me washed up on some deserted beach. Population: one.

It’s kind of funny looking back, now. When I first arrived in Australia in March 2019, my main intention was to catch my breath, see some friends, and reset after spending much of the previous decade wandering; letting the wind and my wild heart carry me around the planet.

Instead, like a lemon broken down to its most basic elements, these last few years have grated me dry, wrung out all the juice, and squeezed out the seeds.

Taken almost all my zest for life.

Yet somehow, amidst it all, I can still feel fragments of hope. Like the love that spans across both physical oceans and oceans of memories, and the way she says my name when she first answers the phone.

It feels a bit like life has planted all those old lemon seeds and is growing them into something new. Like everything is in flux, and my body and mind are working to heal the parts of me that are broken. Like they can’t help her, but they can help me show up for her better.

It’s hard to love so much, grieve so deeply, to be so far away, and yet, to keep showing up. To keep meeting her anew, like a blank slate with a happy voice, holding tightly onto a world that is spinning too fast and not fast enough, all at the same time.

But, I do it for her.

Because, as painful as it is, I know I have my mother and my grandmother’s strength and resilience. Their ability to hold both love and sorrow in one hand, and alchemise it into something else.

My grandma’s gift was her garden. My mum’s was her work as an occupational therapist and her photography, and mine is my writing.

No matter what comes next – or what we remember – this, to me, is the true matrilineal gift. A legacy of love and creativity, passed down from daughter to daughter, from generation to generation.

And now, as this specific branch in our lemon tree stops with me, I hope my words will carry on what my genes cannot. That they will pass on that same strength and resilience and ability to hold love and sorrow, and alchemise it into something beautiful.

Happy birthday, mum. It’s an honour to be your daughter.

All my love,

Cassie


Thanks for being here. Thanks for reading, and thanks for supporting me. All of it helps me keep showing up for her, too.

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