The first major change came when she was admitted to hospital with a UTI and delirium. At the time, everything felt sudden and extreme - confusion, fear, mistrust, believing people were trying to poison her food.

Doctors told us delirium might:

• resolve completely

• come and go

• or possibly lead to dementia

We didn’t know which path we were on. We thought if the infection cleared, she might go back to being herself.

She never fully did.

Looking back now, that hospital admission was probably the moment things truly began, but we didn’t understand it that way at the time. We thought we were dealing with an infection, not the start of a long journey with dementia.

What’s hard in hindsight is that many of the early signs didn’t look like dementia.

They looked like:

• refusing help

• becoming more stubborn

• struggling with routines

• resisting carers

• cancelling support

• wanting to do everything her own way

We thought she was trying to keep her independence. We didn’t realise she was becoming overwhelmed.

Her mobility declined, she stopped going out alone, and everyday tasks became harder. But none of that screamed “dementia” straight away to us. It felt like a reaction to illness and loss of confidence after hospital.

The biggest changes weren’t just memory - they were behaviour and judgement.

Later, we saw things like:

• unsafe use of the cooker

• confusion about clothing

• hiding money and food

• incontinence

• repeated phone calls

• difficulty using technology she once managed

Each and everyone of these were signs that she was no longer able to judge risk, manage daily life, or understand what was happening around her.

Installing cameras and devices for safety changed everything. Not because we wanted to watch her - but because it revealed how much she was struggling when she was alone and how much she was still trying to hide from us when we were there. 

We saw falls, confusion, hallucinations and unsafe behaviour that we would never have witnessed otherwise. Without that, we might still have believed she was “coping” better than she realistically was. 

I wish I had known that dementia doesn’t always begin with forgetting names or getting lost.

Sometimes it begins with:

• delirium after illness

• changes in behaviour

• refusing help

• becoming defensive

• struggling with daily tasks

• unsafe decisions

• personality changes

• fear and confusion

And I wish I had known that it’s okay to question what’s happening sooner, even when doctors aren’t yet certain.

One of the hardest parts of looking back is guilt.

The feeling that maybe we should have pushed sooner. Asked more questions. Seen it earlier.

But the truth is:

• We worked with the information we had at the time.
• We were told delirium might go away.
• We were told she still had capacity.
• We were told she could remain at home.
• We didn’t ignore the signs.
• We just didn’t yet have the language for them.