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:
Moments that matter - battles and everyday frictions and then the amazing joy and freedom that we’ve both found in the forgetting.
Patience, praise and fibbing - learning to let go and forgive, creating gentle strategies and telling small stories that keep Milly calm, confident, and smiling.
Lasts and finds – old abilities, well learned manners and so many of life’s lessons persist, showing love and connection beyond the memory loss.
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 anywhere - charities, NHS sites, self-help groups but those definitions don’t capture the lived experience. Here’s a little of what dementia really feels like for us: the small, the big, the silly, sometimes frustrating, sometimes 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, none of which matched, all fiercely guarded.
She knew she was in a muddle and was cross about it, but helping wasn’t simple. To do so meant sitting for hours, going through each name, waiting while she wrote every card, then every address. And 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 is part psychological - a defence against the terrifying idea that something is fundamentally wrong - and then it can be part neurological. The medical term is anosognosia, a loss of awareness caused by brain changes themselves.
At first, Milly’s denial was an act of self-preservation: she was anxious, ashamed, 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!”
We have had so many challenging moments like these and we still do when I’m tired, fed up, or have other things on my mind. But I’m better at ignoring it now. As often as I can, I stop trying to convince her. I often have to sing to calm myself, and I try not to correct, explain, or prove a point.
I focus instead on her fear, her embarrassment, and her need to feel in human and loved. When I do that, we get on so much better!
Memory Loss: Less Scary Than It Seems
It may seem odd, but memory loss has turned out to be the least of our worries. Once I stopped resisting it, a strange, gentle freedom emerged in the forgetting - a freedom 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, to not ‘let the side down.’ Bit by bit, those burdens faded. As long as I managed her finances, social obligations, and the practical weight of her days, 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 or would have liked. The sharp corners softened, tension dissolved, fear ebbed away, and she became lighter, brighter, and so much fun.
Lost a book? Change the subject, and it usually turned up later or she moved on. Some money missing? Taking it seriously stopped her panicking or fretting. I’d promise to investigate. An item missing I might blame myself or, when relevant, technology - she hates IT - and she relaxed. Sometimes she’d bring it up again, but it became just another grumble to share about the world we live in.
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. At first, I would look at her as if she were being silly. I know - that sounds cruel. “I’ve got them, for goodness’ sake!” I’d say. But the big, round, scared her eyes quickly stopped any further unkindness on my part. Over time, I learned it was simpler to hand the cards back and take them again another day. She was quite capable of sorting out her own money, thank you!
It’s a delicate balance, one that can still tip into resentment. Taking control of everything is easy - but not when I feel like a paid helper! A simple question from Milly, like “Have you paid my electric bill?” can turn into a verbal sparring match. In the early days, she learned quickly to thank me for all I do before checking I’d actually done it. Praise works wonders!
Now that she is living with us, these questions come out of the blue, as if she’s living independently with a little help from her friends - crazy moments that stun me, because life can feel quite settled and then I’m reminded - Milly is sometimes living in a parallel universe.
Later Days: Bigger Losses, Bigger Lessons
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 we had to protect the familiar, plan activities, and find a balance when 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. Our story is that 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 not available all the time, and she doesn’t feel abandoned - I need to earn a living, of course!
Finding the Balance: Letting Go
Eventually I stopped arguing, correcting, and explaining. My acceptance gives Milly confidence - and therefore comfort and peace.
Friction still occurs, but generally it’s now about protecting her dignity, keeping out fear, and bringing in the fun.
Praise is essential for her too. I try to tell her at least once a day that she’s doing well, that she looks beautiful (because she really 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 told they had written a good story or drawn a great picture at school. Like them, she takes a satisfying, deep breath - she feels safe.
Every single morning until recently (now it’s around once a week) 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!” I daren’t tell you how I sometimes reply. Some days I get so damn irritated. It’s maddening trying to cope and be patient.
The Lasts and the Finds
Through caring for Milly, I discovered that abilities are stored deep in the brain and can persist long after memory and reasoning fail. And so the lasts become finds -moments that amaze, amuse, and confound us all.
Her abilities are almost automatic, like riding a bike. Greetings, politeness, small talk, empathy, and kindness 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 she’ll worry about us driving in the fog because she noticed the weather report.
She also reveals enduring emotional intelligence and wisdom. Her one-liners, “Sometimes the quiet tells you more than words,” “Very little is ruined forever,” “The small joys keep you alive longer than the big plans” -show that life lessons and values can persist, even when memory doesn’t. My daughters love sharing their thoughts and worries - Milly is still their wise and loving grandma. “You could have knocked me down with a feather!” she said to one of my daughters who hasn’t stopped using the expression ever since - I suppose it’s more interesting than “I couldn’t believe it”!
Tone, humour, and manners remain too. Milly is brilliant at offering a cup of tea or something to eat to a visiting doctor or therapist -for me to get! She enjoys sharing time in short, low-pressure interactions.
What is less obvious is that she may not remember a conversation moments later and can struggle to recall facts, make decisions, or handle pressure. As for challenging conversations or unfamiliar surroundings - everything is lost.