Changing Roles

There’s a moment, and I think most people in our group can pinpoint it, where you realise you’ve stopped being just yourself. You’re not just a son or a daughter or a partner anymore. You’re a carer. A planner. An advocate. A nutritionist, a therapist, a financial decision-maker, a medical appointment coordinator. And somewhere underneath all of those roles, the person you were before the diagnosis is still there, wondering how this happened.

That shift doesn’t announce itself. It creeps in. It could have been that you started off helping with a bit of shopping, or you’re making lunch for them until you’re managing medication and finances. Then you’re making decisions that used to belong to someone else entirely. And before you’ve had a chance to catch your breath, you’re running an operation you never signed up for, while simultaneously trying to hold onto the relationship you had in the first place.

How Role Reversal in Dementia Sneaks Up on You

I think about this a lot with my mum. I moved my office into my parents’ dining room so I could be there during the day. On paper, it was a practical decision — I was renting an office in town, this move saved me money and gave my mum some company. Win, win. But what it actually meant was that I went from being Jack, her son, to being Jack, the person who makes sure she’s okay, who makes sure she eats, who watches for the bad days.

The role reversal in dementia didn’t replace the relationship, but it changed it. And that change takes some adjusting to. The first few weeks of working from there were incredibly tough to deal with.

What strikes me every time we talk about this in our group sessions is how many roles people are carrying at once, and how invisible most of them are. There’s the practical stuff — food, health, hygiene, finance, home, decisions. But then there’s the emotional labour that sits on top of all of that. Being the ear that listens. The shoulder that people cry on. The one who pushes for their loved one’s needs to be taken seriously by a system that too often doesn’t. The one who speaks on their behalf when they can’t speak for themselves.

That last one — being an advocate for them — is exhausting in a way that’s hard to explain to someone who hasn’t done it. You’re not just caring for a person. You’re fighting for them. And that fight takes energy you don’t always have.

The Emotional Toll of Becoming a Dementia Carer

We’re at a relatively early stage with Mum — she’s only been diagnosed for around two years at the time of writing. But even in that time, combined with talking to others at our group sessions, the emotional toll of watching the roles shift across the stages of dementia is clear. In the early days, the changes can be subtle. You’re helping a bit more, checking in a bit more. As things progress, you take on more. And more. And more. Until you look back and can barely recognise the shape of your own life.

If you’re a son caring for mum with dementia, or a daughter, or a partner — it’s important to know it’s okay to grieve that change. It’s okay to feel torn between who you were and who you’ve become. And it’s okay to grieve for the person your loved one was. Feelings of guilt, resentment and frustration aren’t signs that you’re doing it wrong. In fact they’re signs of how invested you are. They’re signs of your love. You loved someone in a particular way and that way of loving has had to change.

Why Losing Yourself as a Dementia Carer Is More Common Than You Think

And here’s the thing nobody tells you: sometimes, in the middle of all of that, you discover something new about yourself. A resilience you didn’t know was there. A patience you had to build from scratch. A capacity to love someone in a completely different way than you did before. That’s not nothing. That’s worth holding onto.

But it only stays visible if you make space for yourself within all of it. The risk of losing yourself as a dementia carer is real, and it’s something I see in our community all the time. You are more than your role as a carer. You existed before the diagnosis. You had things you loved, people you spent time with, a version of yourself that had nothing to do with dementia. And that version of you still matters.

The question I’d ask anyone reading this is the same one I ask in our sessions: what did you enjoy before your loved one was diagnosed? Did you have to give it up? And have you tried, even just once, to reach for it again?

If becoming a carer for a parent with dementia has reshaped your life, know that you’re not alone in feeling the weight of it. And know that the identity shift you’re experiencing — the one where dementia changed your identity in ways you never expected — is something thousands of other families understand.

You’re allowed to still be yourself. You’re allowed to carry all of these roles without losing the person underneath them.

That balance is hard to find. But it’s worth looking for.