The Way Home Project

Tag: grief

  • The Cost of Knowing: A Caregiver’s Glimpse Into the Future

    The Cost of Knowing: A Caregiver’s Glimpse Into the Future

    When we’re young, we often wonder what it would be like to see into the future. If you knew what was coming, how would you prepare? Would you even want to know?

    What if I told you there’s a group of people who carry this kind of knowing every single day? Not because they’re psychic or chosen, but because they’ve loved someone whose body has quietly declared war on itself.

    They’re not clairvoyants.
    They’re caregivers.

    I discovered this kind of knowing the day I fell in love with someone already eight years into her kidney transplant journey. Like many, I didn’t realise that a transplant isn’t a forever fix. At best, it buys you 15–20 years. And with that awareness, I found myself holding a kind of emotional time machine — able to see the shape of what was coming. And I had to choose: live day by day, or look deeper?

    I looked deeper.
    To this day, I still don’t know if that was the right thing to do.

    When I looked ahead, I saw two forks in the road.

    One: the transplant path — invasive, high-risk, full of hospital corridors and white-coat decisions. At least twelve months of recovery, with complications, emotional load, and the pressure of being a match in every possible sense.

    The other: dialysis — a slower kind of countdown. Not immediate, but terminal nonetheless. A steady erosion of vitality. A path where I would become a full-time carer, not through sudden collapse, but through gradual necessity.

    So I researched. Not just the medicine. I researched what it would mean. For me. For us. For our future.

    That’s when it hit me:

    Caregivers pay a hidden cost.

    Did you know:

    • A JAMA study found that caregivers under strain have a 63% higher mortality risk.
    • Many experience higher rates of anxiety, depression, and chronic stress.
    • Most neglect their own health while managing someone else’s.
    • Burnout is real. So is guilt. Isolation. Financial pressure. Grief before the goodbye.

    Suddenly, this wasn’t about courage.
    It was about survival.

    My choices weren’t about dreams anymore — they were about how to navigate inevitability in a way that wouldn’t destroy me before the end arrived.

    So here’s the hard question:
    If you knew this was your future, what would you do?

    Would you still love them?
    Would you still stay?
    Would you make peace with carrying a grief that hasn’t happened yet — just so they wouldn’t have to carry it alone?

    Because no one tells you this: when love is tethered to chronic illness, it becomes both shelter and storm.

    You become fluent in hope and dread. You plan holidays around lab results. You celebrate stable bloodwork like a lottery win. And you learn to act like everything’s okay — until it isn’t.

    I used to think strength meant being ready.
    Now I know it often just means being there.

    There are no medals for caregiving. No applause. No audience in the wings. Most of it happens quietly, invisibly. Sometimes, even the person you’re caring for can’t see the toll. That’s not their fault. It’s just the strange math of this kind of love: one person gives more than they knew they had, and the other often feels guilty for needing it.

    And still, you stay. Not because you’re a martyr.
    But because this is the person you chose.

    Because even knowing the end — you wouldn’t trade the middle.

    But let me be clear: This path doesn’t make you a saint.
    It makes you human.

    A human who cries in the car before another appointment.
    A human who resents the unfairness but still holds the vomit bag steady.
    A human who wonders, quietly: Who’s going to look after me?

    And sometimes, the scariest part isn’t the illness.
    It’s losing yourself in the slow erosion of the life you once imagined.

  • The Walk I Never Got

    The Walk I Never Got

    Field Notes from the Edge

    Journal Entry — Date Unknown

    Written during a weekend away, when the silence gave me space to feel. What surfaced wasn’t dramatic — it was quiet, and that’s what made it powerful. This isn’t about a loss in the traditional sense. It’s about the things I never got to live. And the grief of that is real too.

    This weekend has stirred something I didn’t expect.

    I gave myself permission to breathe — really breathe — for the first time in what feels like years. A sunrise with freshly brewed coffee. A bike ride from Coolum to Noosa, café stops and all. A slow wander through the Mooloolaba Aquarium. No dialysis machines, no timelines, no guilt.

    And yet… the grief came anyway.

    Not the sharp kind. The quiet kind. The kind that wraps around your chest and whispers, “Look at what you never had.”

    Because I realised this:
    I never got to walk down the beach, carefree, beside the woman I loved.
    I never got to pour a glass of wine, sit on the deck, and just be with her while music played.
    I never got to go on a casual ride, holding space without holding pressure.

    And I don’t know what to do with that.

    I’ve spent so long trying to make sense of the big stuff — the end-of-life support, the systemic betrayals, the collapse of everything I once held steady — that I never let myself grieve the absence of the small. The gentle. The simple.

    What does it say when I could carry someone through medical hell, but not carve out one ordinary sunset together?

    It makes me question everything. If I couldn’t create that — the basics of joy and companionship — how can I believe I’ll ever build something more meaningful? If I failed at simple, what right do I have to dream of complex?

    People tell me I expect too much.
    But are these really high expectations?

    • A relaxed walk on the beach with someone who chooses me
    • A sense of emotional belonging in my own family
    • A quiet life that still makes a difference

    I don’t think that’s asking the world.
    I think that’s asking to live.

    What haunts me is that I did the hard thing — I stayed. I cared. I bore witness. I held the line.
    But I never got the gentle version.
    And it breaks me a little more each time I see others get that without even realising what they have.

    If someone were to ask me the one thing I truly desire, it’s this:

    A relaxed, carefree walk on the beach with someone who loves me, for the rest of our lives.

    That’s all.

    Reflection

    This grief sits in the quiet places — in the absence of something I never fully held. And that deserves space too. I don’t need to justify it, fix it, or turn it into a lesson. I just need to name it. And keep walking

  • The Pumpkin That Broke Me

    The Pumpkin That Broke Me

    ✦ Journal Entry – Grief in the Kitchen

    A simple act of roasting vegetables turned into a grief trigger I never saw coming. What followed wasn’t just sadness, but waves of shame, anger, and collapse. This is the story of the moment I realised healing doesn’t always begin in a therapist’s office — sometimes, it starts with a burnt pumpkin.

    Cucurbita moschata, Kürbis, citrouille, calabaza, zapallo — or simply, the humble pumpkin.

    Karina used to make an effortless dish with it. Fresh pasta, roast pumpkin, sundried tomatoes, roast capsicum, and a light Roma tomato sauce. Simple. Warm. Comforting. It was my favourite meal, and my relationship with pumpkin was rock solid.

    Until the day it broke me.

    Three months after Karina passed away, I decided to throw a pizza party. Something to bring people together, get me back into hosting, and honour the kind of gathering Karina loved. She’d never forgive me if I didn’t use fresh ingredients or homemade dough. So that morning, I did it right. I made the dough, prepped the toppings, and even heard her voice in my head giving gentle instructions.

    Everything was going well.

    Until I pulled the pumpkin out of the oven.

    What I expected was golden, soft, glistening pieces, just like Karina used to make. What I got were withered, partly burnt chunks of vegetable. And something in me cracked.

    A wave of sadness hit first. Deep and hot. It ached.

    Then came the anger. Anger at myself. Not just because I couldn’t cook pumpkin properly, but because I couldn’t save my wife. The shame followed, fast and brutal. What would my friends think if they saw me like this? I couldn’t even cook a simple vegetable, let alone handle life.

    I shut down.

    I hid under the covers for three days.

    Since then, I’ve learned a few things about grief. It doesn’t follow stages. It doesn’t care about timing. And it loves to amplify chaos. I now think of emotions like traffic lights — they’re signals, not threats. They can overwhelm you when they glitch, but they can’t actually hurt you.

    When everything blinks orange, I do what I’d do at a broken intersection: slow down, stop, scan, proceed carefully.

    Sometimes I still emotionally shut down. But I always restart.

    Usually thanks to my two border collies.

    Grief doesn’t resolve neatly. It lingers. But I’m walking the rest of this road with a little more softness, a little more awareness. And with each step, I keep reminding myself:

    Even broken pumpkin is still food. Even a broken heart can keep going. And even collapsed moments can still cook up connection.

    Sometimes, that’s enough to keep going.