The Daily Dementia
When someone says, “She seems great,” it’s because they are seeing a well-rehearsed performance, in a brief, supported moment, using skills that are still intact.
Theme: The Beauty, Broken & Burnout
Quick Take:
It wasn’t the forgetting that broke us - it was the denial.
Some moments make you pause, others make you laugh. Both teach you what dementia really feels like.
Milly can’t remember yesterday… but she still knows how to make you feel loved.
Dementia: Definition and Origins
Dementia noun (DETERIORATING BRAIN FUNCTION)
Comes from the Latin word demens, meaning “out of one’s mind” or “senseless” (from de- without and mens mind). A gradual loss of thinking and memory skills, with changes in personality, mood, and behaviour that affect daily life, caused by different brain diseases.
What Dementia Really Feels Like
You can look up dementia but definitions don’t capture the lived experience. Here’s a little of what dementia really feels like for us: the big, the small, the silly, and the sometimes frustrating but regularly warm and funny moments of everyday life.
It begins with the slow breakdown of family. It’s when confidence, calm, and safe companionship start to slip, and life together feels less certain.
Early Days: The Little Battles
In the early days, it wasn’t the big things that caused tension - it was the small, everyday frictions. Milly insisting on doing things her way, even when it no longer made sense.
Christmas cards were one of the first battlegrounds. She had a list for hand deliveries, a list for family and friends abroad, and then ‘the rest.’ Perfectly reasonable - until she started reproducing each list again and again. By the end, she had around ten versions.
She knew she was in a muddle and was cross about it, but helping wasn’t simple. Addresses? Not one address book, but several - scattered, incomplete, and contradictory.
Moments like this - repeated disagreements about finances, cooking, appointments, driving - really wear you down. Stress builds. And builds.
The Real Struggle: Denial
It might surprise many people to know that it wasn’t the forgetting that broke Milly and me - it was the denial. Denial overlaps with personality, which makes it tricky.
Few of us cope well with being wrong. If we are the sort of person who has never liked discussing negatives, preferring to move on and think like a positive Pollyanna, then we are even more likely to argue that everything is fine.
Denial in dementia may be part psychological - a defence against the terrifying idea that something is fundamentally wrong - and part neurological. The medical term is anosognosia, a loss of awareness caused by brain changes.
At first, Milly’s denial was an act of self-preservation. She was anxious, ashamed and trying to push the fear aside. Later, as the disease progressed, denial was no longer choice or defence, just a symptom. When she said she’d already eaten, she really thought she had. When I suggested some fresh air? “Don’t be ridiculous - I’ve only just come in!”
Memory Loss: Less Scary Than It Seems
Once I stopped resisting her memory loss and focussed on her fear and embarrassment, a strange, gentle freedom emerged - one that quietly reshaped both our lives and our connection.
Milly seemed to let go of life’s constant pressures: guilt, worries, the endless striving to keep up appearances. Bit by bit, those burdens faded. As long as I managed her finances, social obligations, and practical daily tasks, she forgot the harder, more challenging parts of herself. In that forgetting, I glimpsed the mother I had always known existed but hadn’t seen as often as I needed. The sharp corners softened, tension dissolved, fear ebbed, and she became lighter, brighter, and so much fun.
I learned that what’s forgotten doesn’t matter as much as how I respond.
Taking over her food shopping was surprisingly easy. She avoided going out and actually enjoyed picking things for home delivery. It gave her a sense of control - and a bit of independence.
Managing her finances was another story. I might keep her bank cards for a few weeks without her noticing, only for her to suddenly panic that they were missing. Over time, I learned it was simpler to hand the cards back and take them again another day, because she was “quite capable of sorting out money, thank you!”
Praise Works Wonders
In many ways, it’s easier having Milly living with us. Taking control of everything is less of a hassle than constantly picking up the pieces, and she shows her appreciation all the time - in ways she didn’t when I was just popping in and out. But then I was probably a bit grumpy at my day being broken up or at being asked to do things.
Now, I tell Milly at least once a day that she’s doing well; that she looks beautiful (because she truly does to me); that she’s kind; that I love her gentle hands; that her jumper suits her.
She reminds me of my daughters’ little faces when they were praised at school. She feels safe.
Her thanks steady me. My words steady her.
Later Days: Bigger Losses, Bigger Changes
As dementia has progressed, so have the bigger losses: her mobility, independence, confidence, and control over daily routines including personal care. This is the point at which we could not leave things to chance and Milly moved in with us.
Stories That Keep Us Sane - “Therapeutic Fibbing”
The way my husband and I survive is by telling a story - one that makes sense of our days, protects our sanity, and keeps us laughing. I work part-time for two charities: one for animals, one for small children. Both are important to Milly, so I’m doing something meaningful, joyful, and approved by her. This means I’m often busy and not available all the time, and she doesn’t feel abandoned.
Finding the Balance: Letting Go
My acceptance gives Milly confidence - and therefore comfort and peace.
Every single morning until recently I have to remind her why she lives with us - “because the doctor is worried you might fall again.” She looks at me with surprise. “Don’t be silly! Why would I fall? I’m absolutely fine!”
There are days it’s maddening, but strangely - time, or a kind of autopilot? - I generally don’t fight it anymore. I often chuckle at these moments and because there is no anger or upset, I seem to make Milly smile too.
The Lasts and the Finds
Through caring for Milly, I discovered that some abilities are deeply ingrained and can persist long after memory and reasoning begin to fail. And so the lasts become finds - moments that amaze, amuse, and sometimes confound us.
These abilities are almost automatic, like riding a bike. Greetings, politeness, small talk, empathy, and kindness still show us the Milly we know: warm, interested, and genuinely caring. She’ll ask how we feel, whether we slept well, how work is going - and then, out of nowhere, worry about us driving in the fog because she noticed the weather report.
Tone, humour, and manners often remain too. Milly is wonderful at offering a cup of tea or something to eat to a visiting doctor or therapist - for me to fetch! She enjoys sharing time in short, low-pressure interactions.
No wonder this can be confusing for wider family and friends.
She also reveals enduring emotional intelligence and wisdom. Her one-liners - “Sometimes the quiet tells you more than words,” or “Very little is ruined forever” - remind us that life lessons and values can persist, even when memory doesn’t. My daughters love chatting with her and sharing their thoughts and worries. In these moments, Milly is still their wise, loving grandma.
What’s less obvious is that she may not remember the conversation moments later and can struggle to recall facts, make decisions, or cope with pressure. In challenging conversations or unfamiliar surroundings, that sense of ease can quickly disappear.