Denial: the Fight No-one Wins
For Milly, the idea of dementia was never really up for discussion. There was so much around it that felt frightening or even shameful to her.
Theme: The Beauty & the Burnout
Quick Take:
Denial is protective. When it overlaps with personality it can make things tricky. But as the disease progresses it is neurological, which is when the brain cannot process things normally. Now I know that it helps Milly cope with fear, anxiety, and loss.
Balancing the timing of diagnosis and working out levels of support was challenging. There’s no easy route or straight forward guidance - it depends where everyone is in life.
Understanding what’s happening to Milly makes me kinder, builds trust and helps with managing everything from diagnosis to support to care - but it’s never simple and takes time and patience.
Denial in Dementia
Denial in dementia can be psychological, neurological, or both.
Psychologically, it’s a conscious defence against the terrifying idea that something is fundamentally wrong. It’s like a self-protection - “I don’t want this to be true.”
Neurologically, it’s a loss of awareness because the brain cannot recognise the problem.
I learned to think of it as Milly’s brain protecting her from distress by not letting her see the problem, so eventually I became less irritated when she said, “There’s nothing the matter with me apart from old age.”
The medical term for this is anosognosia - a loss of awareness caused by changes in the brain. What a word - so difficult to say, but it’s a word I reckon Milly would rather hear! It comes from the Greek: a- meaning “without,” nosos meaning “illness,” and gnosis meaning “knowledge.” Literally, it means without knowledge of illness.
Since I’m not a fan of the word dementia, maybe I should start saying something gentler, like, “Yes, there’s a little progression of your anosognosia, isn’t there, Milly?”!
Denial or Masking
I was initially quite confused by the regular references to denial and masking - they seemed so similar (see Seeing Behind the Mask) and outwardly they are, and they overlap. But in simple terms I now like to think of denial as self-protection and masking as social protection.
Denial: Self-Preservation, Not Stubbornness
At first, much of my mother’s denial was an act of self-preservation. She was anxious and ashamed and tried to push the fear aside. There was a fear and stigma of lost independence, lost identity, and lost dignity. Milly hated to be judged, pitied, or seen as incapable.
Generational Silence
Then there was the cultural and generational layer. In her family, talking about ageing, illness, or cognitive decline simply wasn’t done. Admitting forgetfulness could feel like admitting weakness. Growing up in a time when mental health and brain health were barely mentioned, there was a strong instinct to ‘soldier on’ and keep struggles private.
Add to that the fear of the future - vulnerability, dependency, becoming a burden - and it’s easy to understand why Milly resisted the whole topic. Dementia wasn’t just unwelcome; it was a conversation she simply couldn’t bear to have.
When Denial Meets Personality
For close family, this creates another complication. Denial overlaps with personality, which makes everything trickier. Milly, like many of us, has never coped well with being wrong, and dementia didn’t change that. Daily reminders, small arguments, quiet stand-offs - each a tiny moment where she can’t do something, needs help, or has made a mistake, yet insists everything is absolutely fine.
All of this led back to one obvious question - diagnose or not?!
Diagnose, or Not
For a long time, I avoided getting a diagnosis. The fear and denial felt too heavy. I knew it would stress her, and anyway, her care wouldn’t change.
If she had been younger, I would have looked at things differently because symptoms might not be dementia so a proper evaluation matters. Also, an early diagnosis can bring more options - protecting brain function for as long as possible, looking at medications and clinical trials, preserving independence, and financial, legal, and life planning.
Sadly, I’m not sure about the other benefits.
There’s a big gap between diagnosis and helpful support, and that’s a major frustration.
Choosing the Moment
It wasn’t until Milly became more reliant on me that I felt I could manage an assessment in a way that wouldn’t upset her. I wanted confirmation so I could start managing her care officially with her GP and other services. There were practical reasons too. She would be exempt from Council Tax, and since I was managing her finances, I needed to protect her money.
Milly has always respected the NHS. I’d been involved with the breast screening programme from its very start in the late ’80s, so she understood the importance of attending appointments and how vital research programmes are. I framed it gently. People are living longer. Memory problems come with age. The government is looking into drugs that might help.
She went along with the tests - see How High Is a Bus? - that included having a brain scan. Mixed dementia was diagnosed - Alzheimer’s and Vascular Dementia.
What I Chose Not to Do
I chose not to involve her in medications to slow the disease. There were already enough medical challenges to manage, and at her age, I didn’t want to add the burden of side effects.
It was a delicate balance: protecting her, managing her care, and keeping her dignity intact.
When Denial Is No Longer a Choice
Later, as the disease progressed, denial was no longer a choice or a defence - just a symptom. Plus time became largely meaningless so she literally couldn’t perceive what was happening to her. When she said she’d already eaten, she truly believed she had. When I suggested going out for some fresh air, she’d look irritated and say, “I’ve just come back from a walk!” - with absolute confidence that nothing was wrong.
At first, I argued. I tried to explain, to point things out, to help her see what was happening. She didn’t. And every push only made things worse. Eventually, I realised that arguing was a complete waste of time - and that it hurt both of us, particularly me.
I don’t always get it right, even now. It takes strength, patience, and a good night’s sleep to respond well. But when I can, I stop trying to convince her. I stop correcting, explaining, or proving a point. Instead, I try to respond to her fear, her embarrassment, and her need to feel in control. When I focus on that, we get on so much better.
The Days That Break Me
But, oh my, there are days when my mother’s world makes me feel like I’m going slightly mad. It’s one thing that she’s oblivious to her memory problems. It’s her complete unawareness of her physical needs that sends me spinning. Regularly she’ll say, “I’m quite independent really, aren’t I?” On good days, I smile and say, “Yes, you are.”
On bad days, something rises up in me. I might snap, “Independent? Are you joking?” and start listing all the things she can no longer do - personal care, handle money, cook, clean, shop, go anywhere on her own.
Then I catch her frightened little eyes, and they stop me before I go too far. I back off.
Guilt, Grace, and Carrying On
Afterwards, I carry a mix of relief and guilt, wondering how much patience I have left - and how much more I’ll need.
My daughters help me manage some of that guilt. They say they’d probably speak to me in the same way if they were looking after me 24/7.
“You’d understand our fear and frustration, wouldn’t you?” they say. And I would. Of course I would.