Why? Why? Lie! Deny!
Never-ending whys and lies - from both of us
Theme: The Broken and Burnout
Quick Look:
Groundhog day is our life - every day brings the same questions and confusions, as if yesterday never happened.
Memory’s mis-directions - “I already did that” isn’t fibbing; it’s dementia reshuffling time and events.
Little stories that have huge influence - small explanations, playful nudges, and gentle routines guide Milly through each day.
Groundhog Day
Every day feels a bit like Groundhog Day. So many whys:
What’s happening today? Do I have to go? When do I have to leave? Why are they coming? Why does my hip hurt? Why do I have to take these tablets?
Not Lies, Just Lost Time
And so many ‘lies’ - though I have learned to accept, most of the time they’re not lies, just a bit of denial or muddled truths.
I’ve just eaten! I’ve been out! I went walking! I drove the car last week! I only saw her recently!
It can feel like absolute hell.
When Time Slips Away
But in Milly’s world, she truly doesn’t remember. She has done the things she says because, in dementia, time doesn’t just blur - it disappears.
I Got it Wrong
In the early days, I really did think she was bending the truth. She had always told little stories to make a point, so I was used to taking her words, on certain subjects, with a pinch of salt. But when her memory started to go, it felt worse. It seemed like she was lying all the time.
It took me a while to realise she wasn’t - see Denial: The Fight No-One Wins - She genuinely believed it was only yesterday she’d seen the doctor, or last week she’d met her friend, or spoken to her grandson. Initially, I argued, shouted, and confused her further. But once I understood that this is typical of dementia - and acknowledged that it can be exhausting, irritating, or heart-breaking - I tried to see it differently and remember how much she needed peace, comfort, safety, and the feeling of being loved.
Finding Balance in the Chaos
This is where care becomes negotiation and slowly, I found a balance.
Milly would happily eat chocolate all day, never go out, and simply be around me and my husband if she could. That would mean losing all independence - including how to dress, wash, or change channels on the TV - and driving us completely mad.
It’s exhausting, mind-numbing, confusing, and so damn frustrating.
My Whys and Lies
So I create a slightly different world, lie after lie after lie - or therapeutic fibbing!
And I always check in with myself asking: Why did I say that? Why am I doing this? Why do I want her to do that?
If the answer is because it helps me help her - to protect my energy, sanity, and boundaries - and if it isn’t unkind, then I go ahead. Without guilt. Looking after myself allows me to look after her with love, not resentment or exhaustion.
Yes, sometimes I ‘make her’ - or rather, encourage her - with carefully spun tales and enough charm to make everything feel okay!
Therapeutic Fibbing
I’m lucky. Milly’s from a generation that respects doctors and the NHS. Most people can be persuaded this way: health worries make us all a bit vulnerable, and the idea of a caring GP works like magic.
Holding Milly’s World Together
It’s my regular sweet white lie: our GP is a marvellous and caring professional, deeply concerned about Milly, phoning me most days to check in.
I tell her he’s worried - even six years after she was widowed although she doesn’t remember how long she has been widowed - that she is doing so well without her husband after being with him for sixty years and that it’s important for her to socialise to keep her mind active. That he’s seen too many people fade, and he wouldn’t want that for her, especially as she’s doing so brilliantly.
“How do you know?”
“He checked in today. It’s all about preventative medicine these days. Keeping you well keeps you out of hospital!”
I also tell her I’m worried for myself. That I must not become a carer or companion, that my husband wouldn’t like it and it’d be awful if my marriage came under pressure.
That is the last thing she wants.
That’s how she ended up at the lunch club. She really wasn’t keen and after her first visit, described it as something she didn’t need. “It’s for very old people - I’m not sure it’s right for me yet,” But because she didn’t want to upset her son-in-law and she knew her GP thought it was good for her, she agreed to give it a further try. For a month or so because “you really can’t tell after only a few visits, Milly! She calls it ‘Playgroup’ because she thinks it’s a bit like pre-school and we just go along with it, reminding her of how good it is that she socialises.
I tell her she has to get up because “you were so stiff yesterday, and I’d hate you to become bedbound.” I remind her she needs some fresh air - even in the wheelchair she hates - because “the doctor’s worried you’re not getting enough sunlight for your bones and you don’t want another fall after that nasty fracture.”
I even limit her chocolate. Not because I’m mean - though it can feel that way - but “because too much upsets your tummy these days”. More weight makes her less mobile, and weight and upset tummies makes caring for her harder. Yes, I’ll admit it: sometimes I sneak a piece of chocolate for myself before giving her some cut-up apple and banana!
The Magic of Small Stories
My connection with her comes through endless cups of tea, watching game shows together - perfect, no plot to follow - reading out bits of her paper (or comic as we call it - perhaps you can imagine the stuff she loves!) and sharing endless gossip about people she doesn’t know, will never meet, and might not even exist. The more scandalous, the better!
We’re all unique, and what motivates each of us varies. My father would have been completely different - a glass of wine, some cheese and biscuits, a game of chess, or a shared Sudoku would have worked for him.
Caring for Milly isn’t about following a rulebook; it’s about knowing her, and finding a way in.
Soft Interventions
I should add that none of this comes easily. Here’s our chocolate negotiation.
“I’d love some chocolate!”
“You’ve had quite a bit already this week”.
“I haven’t!”
“Hmmmm, didn’t you have some with your tea?”
“Not today”.
“Ohhh. I suppose I worry because too much chocolate can upset your tummy now you’re older. Also, you need to be careful because of your broken hip. Keeping fit and flexible keeps you mobile.”
“I am mobile!”
“You are but the physio is keen that you do more walking. Do you fancy a little walk now or maybe you should go through your exercises?”
“No, I’m fine. I’m just reading the paper.”
Nice subject changes are very useful! The last thing she wants is a walk or to do exercises - so chocolate is forgotten!
Respectful Negotiation in Every Day Care
At first glance, these conversations might look like I’m speaking to a child, but they’re really about negotiation, care, and respect - the same kind of gentle reasoning I use with myself or with my husband, just adapted to my mother’s world.
When Help Becomes Welcome
In the early days, the idea of me speaking to the doctor instead of her would not have gone down well. I had to step back, bide my time, and it didn’t take too long for things to change. Milly started to panic if she realised she’d forgotten a blood test appointment or when she was given a new medication and had not remembered to start it. I let her forget, even though I could have checked, so that one day, I simply asked if she’d like me to help, to speak to the doctor for her… and the rest, as they say, is history.
White Lies, Big Love
It’s not easy, and it takes time to get it right. But I’ve got the white lies just about perfect these days!