Today I sat in a sterile room, staring at the glow of a screen, waiting for answers. The scan didn’t show the same alarming growth as before. There were things there, yes, but not the kind that immediately demanded removal. Still, I asked for a biopsy. I needed certainty.
Afterwards, I found myself asking the registrar questions most people don’t want to say out loud. If the biopsy is positive and I choose not to go through another surgery, what then? What does life expectancy look like? Would it be painful if nothing more was done?
Those questions hung in the air, heavy and sharp. They weren’t easy to ask, but they mattered.
I realised in that moment something about myself: I don’t shy away from truth. Even when it’s raw, even when it hurts, I want it laid bare in front of me. Knowledge steadies me, gives me ground under my feet. Yet in that same space, I saw my shadow. The need for answers is also fear disguised. The fear of being wrong, fear of carrying regret, and fear of making the wrong call for someone who cannot choose for themselves.
There is a coldness in this role too. Talking about life and pain as if they were numbers on a page. Sometimes, I wonder if my pursuit of clarity strips away tenderness, makes me sound more like a decision-maker than a wife. But then I remember: both are true. I am the one who has to ask the hard questions, and I am the one who will lie awake at night replaying them.
This is love in its most complex form. It is both fierce and fragile at once. Love that doesn’t always mean fighting for more time, but choosing peace, dignity, and comfort. Love that walks into the hard questions because avoiding them would be easier, but far less kind.
In the end, I can’t control the story’s ending. All I can do is walk through it with honesty and love, even when love feels cruel.
The past few months have been heavy. Heavier than I’ve wanted to admit.
I’ve found myself snapping more often, the softness in my voice replaced with frustration. The days have blurred into a rhythm of exhaustion, of emotional grief layered with financial strain, each one feeding the other until I was running on fumes. Friends and family have started to say what I’ve been silently afraid to think: maybe I’ve reached my limit… maybe it’s time to consider the next step, the rest home, the letting go.
But in the stillness of the last couple of days, something shifted in me.
It wasn’t a loud epiphany or a dramatic moment. Just a quiet, honest conversation with my heart. And in that moment, I realised I had been standing too long in the shadow of my own pain. I had been so focused on what I was feeling, on what I was losing, that I stopped seeing what I still had.
Our life. Our shared story. The love that still exists between us, even if it’s changed shape.
He may not always remember the details. But I do. And I want to make this time count.
Not out of guilt, or fear, or pressure but out of love. Out of a deep knowing that even now, we are still us.
That realisation doesn’t magically erase the hard days, or the broken sleep, or the ache of watching him slip further away. But it softens something in me. It reminds me that this season, as painful as it is, is also sacred. A time to show up with more gentleness. To laugh when we can. To hold his hand a little longer. To meet him where he is, rather than always wishing things were different.
I don’t know what tomorrow will bring. But I do know this: God has never stopped walking with us. Not once. And I believe He’s giving me the strength, not just to endure, but to choose joy where I can. To find moments of peace even in the chaos. To shift the weight from “why is this happening?” to “how can I love through this?”
And surprisingly, that shift brings light. A quiet kind of hope.
Because this isn’t the end of our story — it is a chapter. One I want to fill with as much meaning, laughter, and grace as we can carry. The kind of chapter that, years from now, I can look back on with no regrets, knowing I gave the best of me to the one who gave me so much.
Not all at once but just enough to adjust. I started reducing hours, working from home, taking on smaller jobs that gave me space to be with him. To soak up the time while his memory was still intact. I told myself: Let’s make good memories now, while we can. For the harder days ahead.
I kept juggling multiple roles, short hours, different hats. I was still me, just a scaled-back version. Still contributing. Still in control.
But gradually, the letting-go began. One job at a time. Quiet resignations. Little decisions that felt necessary, not dramatic. And then his memory loss worsened. The confusion deepened. The anger surfaced, not at me, really, but at what was being lost.
At the same time, I started losing confidence in myself. I wasn’t performing at the level I once did. I missed things. I got reminders for tasks I forgot or did late. And I felt it: the sting of shame, the sense that I was failing—not just him, but everything. The multitasker in me, the professional, the woman who once thrived on structure and sharpness… she felt like she was slipping away too.
Eventually, I stepped back further. Not because I stopped caring—but because I couldn’t keep pretending I could do it all. The roles needed more than what I had left to give.
And with that came fear. Fear of the future. Fear of not having enough —financially, emotionally, mentally — when this chapter ends and I’m left to begin again. Fear of facing that future alone.
This isn’t the life I imagined.
But it’s the life I’ve quietly stitched together, threaded with duty, love, exhaustion, and grief. I gave up those jobs one by one, not because I was weak but because I was holding someone else’s life together.
And somewhere in the middle of all that letting go… I forgot to hold onto myself.
Sometimes the most difficult thing isn’t the caregiving — it’s asking for help. This post is for anyone learning to ask, not because they want to, but because they have to. ———————————————————————————————–
I’ve always preferred to give.
It’s in my DNA , in the way I was raised, in how I live, and how I love. I like to show up with something in hand: a cake, a meal, a warm gesture, a practical solution. I like being the one who helps, not the one who needs help.
But life, as it so often does, has asked me to grow in ways I never expected.
These days, I spend my late nights doing the quiet work when he is finally asleep and I can catch my breath. That’s when I research, think clearly, and write. I study government websites, read between the lines of policy documents, and craft careful emails — because someone I love depends on me. And even though I don’t like asking, I do it. Because I must.
That doesn’t mean it’s easy.It can feel humbling. It can feel exposing. But it has also been an invitation to courage.
You see, navigating the system isn’t just about ticking boxes. It’s about learning a whole new language , the right words, the right framing, the right timing. It’s listening carefully not only to what’s said, but to what’s not. It’s knowing that help exists, but often hides behind unclear forms and closed doors.
So I’ve made it my quiet mission to learn how to open those doors.Not just for us, but perhaps, one day, for others too.
And even in the hardest moments, I’ve been met with goodness.With neighbours who just show up.With friends who don’t ask what I need, but simply do.With practical kindness that arrives without fanfare.With the community that rose for me when I needed it most.
That’s the part I hold on to when things feel heavy.The deep reminder that I’m not alone in this. That grace is often tucked into the smallest acts — a message, a meal, a shared silence.
I’m learning, too, that asking isn’t weakness.It’s strength wrapped in vulnerability.It’s the quiet bravery of someone who refuses to give up.
So yes — I’ll keep writing those emails. I’ll keep staying up late and chasing clarity in a system not designed for ease.
Because there’s a kind of hope that lives in persistence.And because love makes you braver than you ever thought you could be.
I don’t know what dementia feels like from the inside. I can only speak from where I stand—next to him, watching, listening, guessing at what it must be like for him.
There are times he tries to speak and I can tell—he knows what he wants to say. I can see it in his eyes, that familiar spark of clarity. But then, the words come out wrong. Or not at all. And he knows it. You can see the flicker of frustration, like he’s just missed a step he’s taken his whole life.
It’s not just forgetting. It’s like the mind is trying to work, but something misfires—like a wire has come loose and the message just can’t get through.
And I think: how must that feel? To still know… but not be able to say. To try… but not have the right pieces fall into place. To see the world carry on around you while you stand in the fog, waving, hoping someone still sees you.
It’s heartbreaking. Not just for him—but for me, too. Because I remember how sharp, how witty, how precise he used to be. And now, he’s still all those things in spirit… but the bridge between us is harder to cross.
I don’t claim to understand it fully. I just know what I see. And I know the ache of standing next to someone you love as they fade in and out of clarity. Sometimes I get glimpses of the him I’ve always known. Other times, it feels like he’s slipping through my fingers.
Dementia doesn’t steal everything all at once. It unravels. Slowly. Cruelly. And somewhere in that unraveling, I try to hold the thread.
So I listen differently now. I pay attention to tone, to gestures, to the way he looks at me when the words fail him. Because even when the words are wrong, the meaning is often still there. I just have to reach for it.
And in those moments, I remind myself—and him—that he’s still here. Still him. Still loved.
We may have to meet in the fog sometimes. But love… love always finds its way through.
Like the time I asked him what he wanted for breakfast, and he looked me straight in the eye and said, “A glass of champagne and you in a red dress.” I laughed so hard, I nearly burned the toast. He didn’t remember saying it a few minutes later, but the sparkle in his eye lingered — like a curtain momentarily lifted to let the light through.
Or the afternoon we sat on the couch, and out of nowhere he whispered, “You’re still the prettiest girl I know.” I turned to him, half-expecting confusion or misdirection, but no — that was all him. The man I married. The one who always knew how to make me blush.
Then there was the sock episode — he wore mine, bright pink and far too small, and insisted they were “limited edition men’s ankle warmers.” He defended them fiercely, right until he tripped trying to stretch one over his heel and we both ended up in fits of laughter.
These are the moments that keep me going. Because even now, even when memories fade or days blur into each other, there are flickers. Tiny rebellions of joy. Love surfacing in unexpected ways — a cheeky grin, a ridiculous joke, or a sudden urge to walk hand-in-hand around the garden, like we used to when everything still made sense.
They don’t stay long. But they’re enough.
They remind me that he’s still here — and so am I. Not just surviving, but laughing. Still living.
The hardest part of this condition isn’t always the forgetting. It’s the slow, quiet erosion of certainty — the confusion that seeps into daily life, the disorientation that unsettles even the familiar. And for someone like him — a man once so quick, capable, and rooted in routine — it feels like such a cruel undoing.
I see it in the smallest moments: standing before a cupboard, unsure of what he came for. Putting a shirt on over his pyjamas. Looking at the kettle and forgetting how to use it. These aren’t mere slips — they’re signs that something deeper is shifting. And each time, it stings. Because I remember him as he was. I still see who he is.What’s painful isn’t just what’s gone, but knowing how much he would struggle with being seen this way. He always took pride in doing things well. And now, even the simplest tasks often need my quiet help.
We tried to prepare — enrolling in courses, asking questions, trying to understand what was coming. We wanted to face it with readiness, with grace. But no amount of knowledge can soften what this journey truly demands. It changes your days, your roles, your home, and even how you speak and move. Nothing prepares you for how much you’ll need to let go — and how much you’ll fight to hold on.
We tried to prepare in every way we could — mentally, emotionally, physically. We took courses, asked questions, and read everything we could, hoping knowledge might soften the unknown. Even our home was built with this journey in mind. We factored in what might one day be needed — wider hallways, easy bathroom access, a smart toilet, smooth flooring for safe movement, even room to navigate a wheelchair if it came to that.
These weren’t last-minute adjustments but thoughtful choices from the beginning — a kind of quiet caregiving built into the walls. We wanted our home to be a place where he could stay, safely and with dignity, no matter what changed.
So I adapt. I reshape our space, our days, and my own expectations . Adjustment isn’t something you do once. It’s something you do over and over. Every time something shifts in him, I shift too — in rhythm, in tone, in patience. I change not just how I care, but how I live.
That’s become my quiet promise: to preserve his comfort and his dignity. To guide without taking away his pride. To step in without stepping over. I change things behind the scenes so he doesn’t feel how much I’ve had to rearrange. Because he’s already carrying enough. He shouldn’t have to carry the weight of what’s changing, too.
But I’ll be honest — I haven’t always done it gently. There are moments when I’ve snapped, raised my voice, or met his agitation with my own. I wish I hadn’t. But I’m human. I care so deeply it sometimes hurts. And when I fail, the guilt follows.
To make all of this work, I’ve had to reframe my life. I stepped back from my full-time work. I now work from home, not because it’s easier, but because it’s the only way I can make sure he stays where he feels safest. Home. With me. That kind of care can’t be scheduled — it needs presence, patience, and love that doesn’t end when the clock does.
We’ve had help along the way, and I’m grateful. But even that takes work — learning the right words to say, understanding how to describe what’s needed. “Standby assist.” “Mandatory prompts.”
Still, through it all, there are moments — a smile, a laugh, a sudden tenderness — when I see him again. The man I married is still here, even if the world has become unfamiliar to him. His essence hasn’t vanished. It’s just harder to reach.
And so I keep adjusting. Keep softening the edges. Keep showing up — however imperfectly — in the only way I know how. With quiet love. With unwavering presence. With hope that somehow, through all these changes, what matters most still finds a way to remain.
There are days I don’t recognise you. Not in your words, not in your eyes, not in the way you look at me like I’m the stranger.
And I try—I really try—to remind myself that it’s not you, it’s the illness. But when the harshness cuts through, when your voice rises and your eyes narrow, It feels like I’m standing across from someone who no longer knows how to love me.
And it breaks me.
Because I remember the man who used to make me laugh,who used to protect me, who looked at me like I was the best thing he’d ever found.
I still see him sometimes—in the quiet moments, in the flicker of a smile,in the way your hand still searches for mine in sleep. But those moments feel fewer now.And I miss you. I miss you so much it feels like a grief that doesn’t end.
Sometimes, I resent this journey.I resent that I’m the one carrying the weight, that I have to stay calm when I feel like screaming, that I have to be strong when all I want is someone to say, “Let me take care of you for once.”
But still, I stay. Not out of duty. Not just because of vows spoken years ago. I stay because love—real love—isn’t about ease or comfort.It’s about presence.
And I promised you I would be here, even if you forgot who I was.
So I will hold your hand when it trembles. I will soothe your anger, even when I’m hurting too. I will walk beside you, even when it feels like you’ve turned against me. Because deep down, I know you’re still in there, lost in the fog.
But I also need to remember me.That I matter too. That my pain is real. That I’m allowed to cry, to ache, to question.And that none of this makes me weak — it just means I’m tired.
So tonight, I’m writing this for me.To release the guilt. To honour the struggle. To remind myself that I’m still here.
And I’m doing my best. Even on the days it feels like love is a battlefield. Even when it feels like I’ve lost you, one piece at a time.
There are moments when he looks around and says, “I don’t know where I am.” And in that instant, I imagine how frightening it must be inside his mind—searching for something familiar, anything to hold onto.
So he reaches out—not just with his hands, but with his memories. Do I need to go to work? What day is it? I think I need to go home to my parents. He speaks of people long gone, of places that no longer exist, trying to anchor himself to something—anything—that will make sense.
And yet, the world he wakes into each day doesn’t match the one he remembers.
That’s the heartbreak of dementia. The world slips away piece by piece while the body remains. I see it happening right in front of me, and still I can’t imagine what it feels like from where he stands—caught between time, place, and memory.
Sometimes, he looks at me and doesn’t know I’m his wife. But he knows I’m someone who cares.
And that’s enough.
Because I have to be his anchor when the fog rolls in. His guide through the mist.
I can’t pull him out of the confusion. I can’t give him back the certainty that once lived so easily in him. But I can be kind. I can be steady. I can stay.
It takes courage—more than I thought I had. But love asks that of us. Not the kind you see in movies or read in stories. The real kind. The patient kind. The kind that shows up even when the person you love forgets who you are.
Because every now and then, through that dense fog, there’s a flicker—a moment of clarity where he smiles, where recognition dawns, however briefly.
And for those few precious seconds, it feels like the sun breaking through the clouds.
So I keep going. I walk beside him through the confusion, holding his hand through the uncertainty. I remind him—gently, often silently—that he is not alone.
Even if he forgets everything else,he will never forget how it feels to be loved.
Tonight was one of those nights—those increasingly frequent nights—when he said he wanted to go home.
No matter how many times I told him he was already home, it didn’t stick. I tried to sound calm, gentle, reassuring — but nothing I said reached him. He just kept repeating it. Like my words vanished before they ever reached him.
Eventually, I tucked him into bed, exhausted from the cycle. I knew he’d get up again. So I turned off the lights and I went back to the lounge. I couldn’t take hearing it again. Sure enough, he came out twice, looking for me. I watched him from the home cameras I had installed to keep an eye on him.
Each time he wandered out, I stayed hidden—quiet, angry at myself for needing to hide. For not having enough patience. I sat there in the dark, steeped in guilt. Frustrated with myself more than with him. He didn’t ask for this. He doesn’t understand what’s happening. And here I was—too worn down to meet him with compassion in that moment.
And then I remembered something he once told me:When he was a young boy, his mum was very ill and had to be in the hospital. He was left with his grandparents and spent many nights alone in a back room, listening to the rain on the roof, longing for his mother.
And I thought—maybe that’s how he feels now. Alone. Confused. Longing for a sense of safety he can’t quite name.
I couldn’t let him go to sleep like that. I couldn’t let him carry that confusion by himself. So I crept back into bed and held him. At first, he didn’t know I was his wife. But he knew I was someone who cared.That was enough to settle him. His breathing softened, His body relaxed.
Then I turned on the light—and he recognised me. The relief on his face undid me.
Moments like these wash away a whole day’s worth of frustration.
Because no matter how tired I am, no matter how many times I lose my temper—I will not let him feel alone in the dark.
As long as I’m here,even if he forgets who I am,he will never forget how it feels to be loved.
I was watching a movie the other night. Nothing grand—just a quiet scene in a café. A warm glow, that soft murmur of people at ease. It was the kind of place we used to visit. The kind of place we both loved, even though I always did the ordering. He’d look at the menu, maybe point at something, but in the end, he’d smile and say, “You choose. You know what I like.”
It wasn’t about the food. It never really was. It was about the comfort of knowing each other so well. The shared looks across the table, the quiet conversations, the way he’d watch me when I wasn’t watching. Little things—things you never think will become memories. Until they are.
As I watched that scene unfold, it hit me: We won’t have that again. Not like before. Dementia has stolen that simple, beautiful part of our life. It crept in slowly, then suddenly—changing everything while we weren’t looking. The one who used to make me laugh with a well-timed joke, who knew how to show up for me in quiet, constant ways… He’s still here. But not always.
And I ache for what we’ve lost.This disease—it’s cruel. It doesn’t just steal memory. It steals shared routines. The ease. The unspoken. It takes the little things and makes them unreachable.
And every now and then—like in that movie—it all rushes back. The beauty of what we had. And the sorrow of knowing it’s gone.
Grief like this doesn’t end. It comes in waves. Sometimes gentle, sometimes overwhelming.
You find yourself smiling at a memory, and then you’re in tears because you know you’ll never live that moment again.
I cried that night—not for what we had, but for what we’ll never have again. For all the café scenes that won’t happen. For the conversations that will never come. For the one who still sits beside me, trusting me to order— but no longer able to meet me in that same familiar way.
