Seeing Behind the Mask
Beneath the smile, the calm, the polite nods and the cheerful “I’m fine,” lies a hidden story. Masking is part of Milly’s survival - it’s how she’s coped in a confusing, overwhelming world.
Theme: The Burnout
Quick Take:
Masking takes a toll on everyone – it’s exhausting for Milly and me, and confusing for extended family and friends.
Just because Milly can laugh, share kindness or offer wise comments doesn’t mean its easy or comfortable for her.
The road to peace - simplifying life and prioritising simple companionship over social expectations and long-held friendships.
Growing Up with Hidden Emotions
Milly’s always been good at masking. Coming from a generation where talking about feelings was rare, she developed a quiet stoicism - masking her emotions as a way of coping or protecting herself. When she was tired or ill, she’d pretend she wasn’t so that she didn’t appear weak or let anyone down. It always annoyed the heck out of me when I was growing up, I didn’t like things being hidden or not quite real.
More than Meets the Eye
Now, in dementia, what bothers me the most is the confusion it causes family, friends, carers, and even medical professionals. Everyone so easily thinks Milly is doing fine based on her saying things like, “How lovely to see you!” or “What a mess we are in!” as she refers to waiting lists or the war in Ukraine. It's easy for everyone to assume she’s doing well and even enjoying herself and although she may seem fine compared with those with advanced dementia, the reality is far more complicated than it looks.
Behind the Mask
Milly has these normal conversations because of years of practice, social conditioning and the ability to recall deeply ingrained social cues. She’s mostly running on autopilot, relying on responses she’s spent a lifetime perfecting.
More importantly, just because she can laugh, share kindness, or offer wise comments doesn’t mean it’s easy or comfortable for her.
Despite appearances, she’s often struggling to keep up, not only thinking about what to say but also worrying about what she’s just said, what others have said, and what she’s meant to do next. Memory loss means she’s constantly trying to catch up with the conversation and the world around her - wondering when people are leaving or if she’s said something wrong. It’s mentally and emotionally exhausting.
After these interactions, she’s drained and avoids things that could actually help, like deeper connections with her near family or moments of fun, because she’s so worn out from trying to track everything.
Masking or Denial?
In the early days I didn’t understand the difference between denial and masking - they overlap and they caused the same major arguments. I finally found a simple way to understand what was happening with Milly.
Denial is Milly’s self-protection. Masking is her social protection.
Protecting Herself
Self-protection, or denial, was initially about Milly consciously shielding herself from the fear of dementia, not wanting to contemplate for even one minute that she might have such a terrible disease. We clashed all the time as I tried to make her understand. Eventually, her denial became unconscious - her brain no longer processed it clearly and she blamed old age or “just being daft.” Once I understood I stopped arguing - it became pointless.
Social protection, or masking, happens at the same time. Milly did her best and continues to do her best to pretend that everything is fine but in reality she always wants to withdraw from activities she used to love - get-togethers and outings, celebrations with family - because they are too difficult to cope with.
Most of us mask sometimes. We smile when we’re tired and nod when confused. It helps us survive work or social situations. Some well-known social commentators argue we should do more masking, that it shows resilience, especially in younger, “woke” generations!
But even without dementia, masking takes enormous energy. One difficult day at work or the attendance of a big family event can leave us drained, irritable, and empty. It doesn’t therefore take much effort to imagine how Milly feels - all the time.
Part-time Personal Assistant
Milly’s masking created a barrier between us and one I found incredibly hard to break through. I knew she was struggling, hiding her fears and avoiding situations that might reveal memory or processing problems.
None of us like the idea of people laughing at us or thinking we’re stupid, so managing friends and family felt overwhelming for her, especially when they did exactly what one would hope they’d do when she tried to withdraw - offer care, kindness and encouragement. Unfortunately, it was the quite a pressure.
And we had so many painful conversations, regularly going round in circles:
“What’s happening Monday?”
“It says in your diary”
“What did you arrange?”
“Nothing! YOU arranged it! You’re seeing Mary.”
“I didn’t organise it?”
“Well I wouldn’t! She’s not my pal!”
“What are we meant to be doing?”
“I don’t know. Having lunch, like you normally do.”
“Why?”
“I don’t know! I didn’t speak to her. For fun?”
“Is it her birthday or something?”
“I’ve no idea. Look in your birthday book. Or ring and check with her what’s happening.”
“Oh, just leave it.”
She never rang. She wouldn’t check her birthday book because somehow that became confusing as she’d notice other birthdays coming up and have to write a note - that would go in a pile of more notes, that became a pile of rubbish. Or it would get lost and then turn up and make no sense.
Taking off the mask - even slightly - felt impossible. She didn’t want to hurt anyone or admit she was struggling. I tried reminders and reassurances but stress always caught up with her, and afterwards she needed rest for hours and take to her bed.
Finally, I had to acknowledge that the only way forward was for me to shift from being the irritated daughter and to stop swinging between frustration and diagnosis.
I had to accept the role of part-time personal assistant.
Being more supportive and giving her space to feel in control and respected was how we found a bit of peace and rubbed along together more easily.
I handled appointments, meals, supplies, and her social calendar, while she began writing calls and plans in her diary. For in-person meet-ups, I stayed involved - sometimes going along, sometimes offering gentle support when she felt overwhelmed - always letting her lead and go alone wherever possible
Friends were kind, but well-meaning attempts to meet up stressed her. I’m pretty sure I was considered controlling at times - I overheard conversations from Milly, like, “Oh, you know what Aggie’s like…” And I’d get predictably annoyed with her. But I appreciate their perseverance - I think it gave her a strong sense of being loved.
Presence is More Important Than Friendship
I once found it difficult to explain to everyone exactly what was going on. Now, I would express it more easily: a simple, gentle presence is more important than friendship. It might seem sad, but for Milly it really isn’t. She has no sense of missing out as long as she feels loved and safe with her family.
I try to explain that, in dementia, the depth of friendships can be difficult to maintain, especially as problems with memory and reasoning increase. Milly has to work extra hard to keep up, often pretending to understand or remember what’s going on. That mental effort can leave her anxious, frustrated, or even embarrassed.
By contrast, an acquaintance or a more professional presence - simply being with someone offering kind support - doesn’t carry the same expectations.
It’s about providing a sense of togetherness without the pressure of deep conversations or shared memories. This type of socialising is more meaningful and fulfilling for Milly now.
I try to avoid situations where I know she’s likely to struggle. It’s not just tiring for her; it’s tough for me too. They’re her friends, not mine, and my job is to look out for her, not put her through interactions that are too draining.
Finding the Balance
Attending the local lunch and social club is the best type of interaction for her - light and comforting.
The team understand dementia and help her participate at her own pace. There’s less need to fit in or keep up with unpredictable conversations. Milly enjoys the chatter and connection by watching activities, joining in if she wants to, and simply sharing time with others. It’s a different kind of socialising, and one that suits her needs.
It also suits mine. I value the break.
I should say that I always share with Milly the lovely letters and cards from family and friends. I choose the right moment, and while messages can cause a brief panic at first - an instant sense of obligation to respond - I’m usually able to reassure her and remind her just how loved she is. Sometimes I wonder whether this is as much about my needs as hers. I remember how much it meant to me when people expressed their love for my father after he died.
A Simple Life
Milly now avoids most social contact. She wouldn’t go to lunch club (“Playgroup,” as she calls it) if I didn’t say it was important, or that her GP encouraged socialising. Masking still persists - she wants to belong, to appear in control. She still asks after people, still smiles, still offers warmth.
The effort is exhausting, and she sleeps for a couple of hours after each visit. No complaints from me - it’s another small break.
This is what care looks like for us now: quieter, smaller, and manageable.