The Alzheimer's article HuffPo + NYT rejected
Because I'm over everything living in my drafts
Hey friends,
I don’t know about you, but I love reading other people’s stories. I’m fascinated by other people’s experiences and how we can all learn from them.
For hundreds of thousands of years, we’ve used stories to pass down wisdom, morals, hope, and knowledge. Stories can help us feel less alone, navigate struggles, and remind us that, even at the end of a very long dark night (or year), the sun always rises again.
Stories can also come in many forms - and are consumed in many now, too, from podcasts to plays, essays, movies, novels, recipes, songs, and poems. Poems like this one, by Sean Thomas Dougherty, which was the tipping point for me deciding to share this piece, today.
Why Bother?
Because right now there is someone
Out there with
a wound in the exact shape
of your words.
I wrote this essay two years ago. At the time, I was desperately searching out stories of people like me, who were on the other side of the world from parents and loved ones navigating neurodegenerative diseases like Alzheimer’s and dementia.
Unable to find anything that quite hit the mark, I thought I’d write them, instead. While one article got published, this essay didn’t. Instead, after a couple of rejections, it ended up languishing in the almost bottomless abyss that masquerades as my Google Drive.
While much has changed since I wrote it - my mum doesn't even know what a phone is, these days - I unearthed it the other day and found myself right back there, standing next to that old version of me.
Reading it reminded me how hard and hopeless everything felt, and how desperate I was for something to hold onto; the tiniest glimmer of a star in a pitch-black sky.
Although it’s about her, it also explains a lot about me and my journey. Last week, I wrote about breadcrumbs. Reading this felt like I was following the trail that led me to where I am now.
It’s a very personal piece, but I like to think it ends on a hopeful note, or at least as much as a hopeful note as I could muster at the time. Back then, it felt hard to see the light at the end of the tunnel.
Now, the two coexist in ways I could never have even imagined.
Young-onset Alzheimer’s comes on fast and hard; following a very untraditional trajectory. My mum didn’t get stuck in her childhood or old songs, she got stuck in anxiety loops.
She couldn’t quite understand what was happening, but she knew something was happening, and that everything else was off. Doctors pegged it as depression, anxiety, menopause.
They blamed it on all the stresses of a busy career woman in her 50s; juggling her paediatric occupational therapy business with caring for her mum - who had become angry and hell-bent on destroying everything, including my parents’ marriage - and still trying to show up for her family and friends, all in the early stages of a global pandemic.
It was all too easy for those early symptoms - brain fog, forgetfulness, etc - to slip through the cracks in a parade of unsuccessful GP visits, antidepressants, and HRT patches; all of them leaving her feeling unseen, unheard, and invalidated.
No one seemed to believe her concerns, so she stopped believing them herself.
By the time we finally got the official diagnosis, years later, she was so far gone she just stared blankly at the wall in the hospital room while the rest of us tried to balance the relief of finally having answers with the unwanted realities of our future.
For us, it all feels like a lifetime ago, now. For others, it’s a nightmare just beginning.
Studies show dementia cases are on the rise. While scientists are (naturally) reluctant to make any connections, yet, microplastics in the brain have been found in much higher concentrations in dementia patients.
Navigating diseases like dementia and Alzheimer’s often involve calling upon the “village” for support - especially in the early stages. But, when said village is spread far and wide, it can bring its own sets of challenges - and benefits.
And so, in the interests of posterity, I decided to share this piece; both as a reminder for myself and a message for anyone else going through it that even when the world feels like it’s falling apart, it does get better.
You may not be able to see it or imagine it at the time, but it does and it will.
Sending you lots of love,
Cxx
Alzheimer’s from afar—how I care for my mother from the other side of the world
Every time the postie comes to the front door of my family home on a quiet, leafy cul-de-sac in Southeast England, I feel my body tense. Not because the dog will bark—although, of course, she does—but more because her bark has become a warning sign of what's to come.
Almost 9,000 miles away, my mind has already switched from small talk to damage limitation mode, steeling myself for whatever crisis awaits on the other end of the phone.
As a long-distance carer for my 62-year-old mum with young-onset Alzheimer’s, I feel like I've spent the last few years living between worlds and time zones; my days punctuated by phone calls, my mind and body alert for the cues that might send my mother's fragile mind spiraling to dark places.
Cues like the post - or anything else that happens in the quiet street, where my mum, at home by herself, is on anxiety-fuelled neighbourhood watch, unable to relax or do any of the old things that brought her joy.
No matter what comes through the door, my mum uses it to make up worst-case scenario narratives and then becomes convinced they're true.
A pamphlet for a real estate agent can quickly spiral into a story about how they're going to lose the house and end up living on the streets, and how it’s her fault because she can’t work anymore. Or the delivery truck outside is someone coming to take her home away.
This is where the distance and time difference work out to our advantage.
Being 7-8 hours ahead (depending on the season), I can take the UK morning shift after I've finished work for the day and bridge the gap between my dad leaving and her friends/carers arriving.
I've become a pro at damage mitigation.
As a voice on the phone, I’ve been there to smooth things over as she’s frustratingly discovered the limits of her disease—including forgetting how to read a clock, make a cup of tea, or face the daily realisation that her mother has died. I was even there, via Zoom, when we finally got her official diagnosis after more than four years of back-and-forth tests and GP visits.
The role of long-distance carer didn't come about because of choice, but more because of necessity. Thanks to a combination of visa restrictions and COVID, I was unable to fly back to be with my family when she first started going downhill.
Looking back, though, I don't know what difference it would have made, apart from making me feel resentful. When I went to see her last summer—after 3.5 years stuck on the other side of the world—our in-person relationship was totally different. She still saw me as a child and tried to teach me how to do the dishes. Inadvertently, I reverted back to my angsty teenage self.
Instead, for the last few years, I've called her almost every day, putting on a happy face, talking for hours. Figuring out the dynamics of our changed relationship, observing the limitations of her new mind.
In the beginning, I'd wish the doctors could see what I could and diagnose her sooner. All I wanted was for someone to help to bring my mum back.
After we hung up, I'd devour books on dementia, almost praying it was a brain tumor. It seemed terribly unfair for her to be inflicted so young, especially after she'd dedicated so much of her life to others; her parents, sister, husband, children, and all her clients she'd seen as a paediatric OT. She'd been living her life holding out for the freedom of retirement, not expecting it to come with a side of dementia.
Young-onset or early-onset Alzheimer’s—when diagnosis comes before the age of 65—can often follow a different trajectory to that of the disease in older people. The decline tends to be sharper, the fallout greater. It can also masquerade as other conditions like depression, anxiety, and menopause, and, with diagnosis mostly relying on ruling out those first, it usually takes years to be diagnosed.
My mother had to give up work, her driving license, her independence, and her own caregiving responsibilities long before we got the official diagnosis.
As is usually the case in the years before diagnosis and during the mild-to-moderate stages of the disease, the responsibility of caregiving for her fell to us, her family, and our "village"—a select group of friends who have really stepped up. It hasn't been easy, but I don't know what we'd do without them, or my father, who is doing the best he can to fill her schedule with uplifting activities and community, while working a full-time job to pay for it all.
Because diagnosis came late—she was already at the moderate stage—navigating it has been a challenge in itself. In the midst of creating worst-case scenarios about everything else, she's made a best-case scenario for herself and refuses to accept her diagnosis, somehow believing she's going to get better.
Talking to her reminds me of playing minesweeper on our family computer in the mid-90s; there are warning signs that you're on unstable ground, but sometimes the explosion just comes out of nowhere.
Every time anyone even mentions the words dementia or Alzheimer’s, she shuts down. I have to tiptoe around it on our phone calls, finding other ways to explain to her that her memory issues are not her fault and no one is upset with her because she had to give up work. I tell her she's doing great and we love her.
I appease her as much as I can and try to keep her safe from a world she sees as full of threats—like reminding her my dad hasn't left her or died. He's just at work.
My mum was a truly amazing woman, but, as her eldest child, I knew her struggles a little too well. After amazing childhood vacations, she'd sit me down and tell me she was really worried about money and that we might lose the house if we didn't cut back our costs now. There was always a price, and it was never the right time to pay it.
Through our phone calls, I feel like the floor has been pulled out from underneath my own life, exposing the damaged foundations beneath.
It's been a confronting experience realizing how much of that childhood conditioning has been playing out in my own anxiety-fraught feast-or-famine freelance reality.
While her fears of money and losing the house make little sense logically, I understand them on a cellular level. Nothing in her life was ever secure—not her parents' love, not her relationship with her only sister, who suddenly died by suicide without even leaving a note, not her business, and not her relationship with her kids, who she could never protect from the hardships of her world, try as she may.
Instead, I learned to protect her. After seeing the toll my baby brother's touch-and-go battle with meningitis took on my parents when I was four, I decided it was my responsibility to step up and keep them safe. My childhood became a web of secrets, carefully stitched together to appease her nervous system.
By the time I was 13, the weight of this self-proclaimed burden made me act out. I became a problem child, filled with hormones, rage, and responsibility. Unable to understand what had caused this seismic shift in me, I know my mum felt abandoned by me, too.
In the end, I left, running off to university as soon as I turned 18. A few years later, one of my close friends died, and it took me even further away. Amidst the haze of grief, I left my motherland with nothing but a one-way ticket to the other side of the planet and a backpack stuffed with all my worldly belongings.
Although my distance helped us reconnect as a family and we grew closer over the years, I never thought I'd end up back enmeshed like this, trying my best to hold the fragments of my mother's mind together while the tides of Alzheimer's take her away to another place entirely.
But as soon as I realized how much my family needed me, I put everything else aside and showed up. Day after day.
And, thanks to the continued distance, I can keep doing it without sacrificing the version of myself I've worked so hard to become. It's been years now, and although it's still challenging, I feel like I've acclimatized.
Being able to be a disembodied voice on the phone also has other advantages, beyond the time difference. As a trusted voice she hears almost every day, it's like I've been granted a key to the inner workings of her mind.
When she forgets who I am, she allocates me other roles in her life—parent, child, school friend, grown-up friend, confidante, counselor. It's been interesting trying to play all the roles and gently guide her back to the fact I'm Cassie. Her 33-year-old firstborn who lives in Australia and loves her very much. I've become adept at smoothing away mishaps; everyone forgets things sometimes.
Although she is evidently impaired, it still hurts to betray her trust by sharing things she's told me in confidence.
A year or so after she'd stopped working, worried about her ability to meet her duty of care, she bumped into an old client while walking the dog and offered to start giving them at-home OT for cash. She was stressing about money and felt like she'd been forced into unwanted retirement—even though it had been her decision, back in the early days of the disease.
It was her attempt to take back some control, but it was also opening up another vulnerable person to potential issues. I knew I had to tell my dad. When she found out it was me, she cried. I cried too.
Although I stepped up, as we all did, part of me will always feel a little guilty for not being there, even though I know the version of myself I turn into when I go back can’t help as much as the one here can.
Instead, being on the other side of the world gives me a chance to play the role of the mother I never biologically wanted to be—and the supportive daughter my mother always desired. It may not be ideal, but it works. For now.
To ease my heartache, I've recently started running community workshops aimed at helping other people write and live better stories. Although I didn't specifically aim for it, most of the participants have been women with similar backgrounds and of similar ages to my mum.
While I know I can't help her live the future she dreamed of, the fact I can use her legacy to help others do so has filled my own cup in a way I didn't even know was possible after the last few years.
For her, though, all I can do is keep showing up. While our hours-long calls have already dropped off to 20-minute check-ins thanks to her diminishing capacities, I've begun to cherish our time together even more knowing it's finite.
I know there's only one way this ends, but in a way, that's true for all of us.
None of us get out of this life alive. All we can do is make the most of our time while we have it, and for me, that's making sure my mum's final years are full of love and support—even if it's from afar.
If you liked this piece, it would mean the world to me if you could like, comment, and share. It may not have been picked up by any media outlets, but my hope is that it might help reach someone, somewhere, going through something similar.
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Thank you for sharing x
Thank you for sharing this piece and the reality of this utterly shit disease on not just the person themselves but the also the ripple it causes across everyone.