When Mum Didn't Know Me: What Delirium Really Looks Like, and How to Prepare the People Who Visit

This one describes hallucinations, confusion, and being mistaken for someone who has died. If you're in the middle of this right now and it feels too close, it might be worth coming back to when you have a little more distance from it.

The first time

The first time we ever noticed it was when Mum went in for a hip operation, not long after she'd just been diagnosed with dementia. We thought it was a reaction to the anaesthetic. It was like she was a different person, in a different place, almost a different dimension, to any of us. It was scary, and genuinely uncomfortable to watch.

If this is the first time you've seen it, that instinct, to assume it must be the anaesthetic, or a one-off reaction to the operation, is completely understandable. Sometimes it is exactly that. But delirium like this is also a recognised, common reaction to surgery and hospital stays in people with dementia, especially soon after diagnosis, not necessarily a sign that anything has gone permanently wrong.

What it actually looks like

The hallucinations were vivid, and her ability to recognise us was a real challenge. Countless times, when I'd visit, she would think I was her brother, who had passed away several years before. She would become paranoid, but other times jovial, and completely in her own world. The jovial, in-her-own-world states were, honestly, easier. The paranoid ones were harder to sit with.

Being mistaken for someone who has died, especially someone close, is one of the specific, hard moments of this. It doesn't mean anything has been lost or forgotten permanently. It's the delirium, not a verdict on how much she knew you, or a sign that the dementia itself has suddenly leapt forward.

Learning to manage it yourself, first

After learning how to manage this myself, I'd then think about preparing others, after a fair few rehearsals of my own. That order matters. You can't really coach someone else through watching it until you've found your own way of sitting with it first.

Preparing the people who visit

I'd always try to pre-warn family and friends in advance. Some were great, understanding straight away. Others found it very hard to see Mum like that. I remember taking calls afterwards from friends who were upset by what they'd seen, describing her as utterly lost.

Telling someone plainly what to expect before they go in, that she might not know them, that she might say things that don't make sense, that she might seem like a completely different person for a while, doesn't stop it being hard. But it does mean nobody walks in blind.

What actually helps in the moment

I'd always gently encourage people who visited to go with it, and try not to resist or correct her. We didn't want to agitate or upset her, and going along with it could genuinely make her happier. Don't try to correct her. Gently encourage, or try to move the conversation on.

This isn't just instinct, it's genuinely well-established guidance. Alzheimer's Society is clear that correcting someone's belief, even gently and with the best intentions, is likely to cause distress, since they're often just as convinced of what they're experiencing as you are of reality. Their guidance on managing behaviour changes puts it plainly: don't attempt to argue or correct, offer gentle reassurance instead, or try to distract their attention. It's also worth knowing that Alzheimer's Society names not being recognised by someone you're close to as one of the specifically hard parts of this, so if that lands harder than you expected, that's a completely normal reaction, not a sign you're not coping.

A word from The Care Compass

If someone you love has just gone through this for the first time, the fear and the strangeness of it are real, and they don't mean anything has gone permanently wrong. If you're the one who's become used to it, and now finds yourself preparing other people for what they're about to see, that's a genuinely hard, quietly exhausting role to carry, and it's alright if some visitors still find it too much even after you've warned them.

This article is for general guidance only and does not constitute medical advice. If confusion comes on suddenly and severely, contact 999 in an emergency, or 111 for urgent but non-emergency concerns.

You don’t have to navigate it alone.