The Fine Line Between Husband and Carer

 

(6th August 2020)

When I think about my relationship with my husband before MND, it almost feels like a different lifetime. We actually met online, very modern love story, I know. In 2015 we were firmly in the friendzone. It wasn’t until 2016 that we finally agreed to meet in person.

At the time, I was living in New Zealand and he was in Sydney, so our relationship started long distance. Every other month, one of us would fly to see the other and spend a week together. Looking back, those trips were some of the happiest times. Every time we met, it felt easy like we had known each other for much longer than we actually had.

Eventually, in 2018, I moved to Sydney so we could finally be in the same place. Life felt normal then. We both worked, we built our routine together, and like many couples we had our favourite ways to spend time. Watching movies was our thing. He’s a huge film fan and could talk endlessly about World War II movies. I wasn’t particularly interested at first, but after listening to him so much, I eventually got into them too.

If I had to describe him in a few words, I’d say he’s passionate and incredibly resourceful. Once I told him that he always finds a solution to every problem that comes up. He loved that compliment so much that he still reminds me about it to this day.

Neither of us knew back then just how true that statement would become.

The shift from husband to carer didn’t happen overnight. It was slow, almost subtle at first. One of the earliest moments I remember was when I struggled to take off my work uniform. My arm just wouldn’t cooperate. He helped me, and because we were both still working at the time, he even MacGyvered a little tool that would help me remove my top when he wasn’t home.

That was the beginning.

After that, it was always something small. Buttoning a shirt. Holding a key. My right arm was the first to be affected. One day I came home from work and tried to open our front door. I stood there with the key in my hand, trying again and again, but my hand simply wouldn’t do what I told it to do. I waited outside for almost an hour until a neighbour walked by and helped me open the door. I never told my husband about it at the time because I didn’t want him to worry.

Eventually, of course, everything became impossible to hide.

As my condition progressed, the caregiving became more real and more constant. Some parts of caregiving are deeply emotional. Some are tender. And some are… well… very human.

Let’s just say dealing with human excrement is not glamorous. Even now, my husband still has a gagging fit when cleaning me up. I don’t take offense at all. He’s human, and honestly, he’s already doing more than most people would ever imagine. Thankfully, a remote-control bidet has been an absolute lifesaver. For anyone reading this, install an automatic bidet. Trust me.

One of the things people don’t talk about enough is the guilt that comes with being cared for by someone you love. I feel it all the time. When I was diagnosed in 2021, we had only been married for a year. We had been together for five years total, and two of those were long distance. He's young, full of ambition, with dreams he wanted to achieve and suddenly his life changed because of me.

Sometimes I can’t help but feel like I’m weighing him down.

This year marks five years since my diagnosis, and that thought still crosses my mind.

Like any couple, we have disagreements. But MND has changed the way arguments work too. Before, if things got heated, one of us would walk away. Usually me. I can’t exactly do that now since I can’t walk.

Communication is another challenge. My husband prefers clear, explicit explanations, but my voice is almost completely gone. We now argue using my Grid Pad eye gaze computer, which honestly can be both hilarious and frustrating. Sometimes he has already moved on to topic five while I’m still typing my response to topic one, word by word.

When disagreements happen, I sometimes feel trapped in my own body. I want to scream, but I have no voice. I want to walk away, but I can’t. I want to punch something out of frustration (though not violently, of course) but I can’t even lift my arms properly anymore. I used to do boxing, so the irony isn’t lost on me.

In those moments, the only thing that really helps is patience. From both of us. Understanding, adjusting, forgiving - those things have become essential in our relationship. Our love has had to evolve because it had no other choice.

These days, love looks different than it did before.

Every morning he wakes up and checks that I’m okay. Every night he makes sure I’m comfortable before he goes to sleep. I’ve always considered myself a secure person in relationshipsh and I never needed constant reassurance. But now, reassurance comes in different forms. It’s in the small, quiet acts of care he does throughout the day.

He understands me even when I can’t speak. Sometimes just a look is enough for him to know I need help. It’s not perfect as many things still require spoken words but somehow he still gets me.

The line between husband and caregiver can sometimes feel blurry. When someone provides full-time care, especially intimate care, it’s natural for things to get complicated emotionally. But despite that, I still feel like we are a couple. He has never once made me feel like I’m a chore or a task that needs to be completed. That matters more than he probably realises.

We still have normal moments too. Movies remain our daily ritual. I still make him laugh with my random humour, and I still cringe at his dad jokes. We still have inside jokes that no one else would understand.

Of course, the hardest part of all of this is the grief that never really leaves. It sits quietly in the background. I also worry about him constantly. What happens in the future? What if one day he gets sick? Who will take care of him?

But if there’s one thing that surprises me the most through all of this, it’s that we are still united. Still strong.

This experience has completely changed how I see love. Love is no longer just about romance or intimacy. It goes beyond those things. It crosses boundaries I didn’t even know existed.

And if one day my husband ever tells me that he wants to move on with his life, I would let him. Not because I don’t love him anymore but because I love him enough to want him to live the life he once imagined for himself. Of course it would break my heart, but after almost a decade of beautiful memories together, he has already proven how far he’s willing to go for me.

For other couples facing something similar, I wish I could say there’s a secret formula that makes it easier. But there isn’t. There will be difficult days. There will be frustration, sadness, and moments where everything feels unfair.

All you can really do is keep trying to make it work despite the circumstances.

And somehow, through all of that, love finds a way to remain.

(1st January 2026)