No such thing as Difficult
When Milly sees things differently, I’ve learned to stop arguing and to adjust my approach . . . most of the time!
Theme: The Beauty
Quick Take:
Milly isn’t being difficult, her behaviours reflect the confusion, fear, and memory loss that come with dementia.
Letting go of what’s ‘normal’ has brought calm. Accepting rather than judging changes in appearance, habits, or social conventions helps Milly feel warm and cosy. No more worrying about the things she used to.
Routines bring safety and predictability so it’s all about structure and familiar cues that make daily life smoother. And peace comes at sharing things she needs to do, at the last minute!
Learning in A&E
“There’s no such thing as a difficult patient.” Many people, including nurses, laugh when I say this, but it’s a philosophy I was taught back in the 1980’s during my nurse training, and it doesn’t really fail me.
In A&E, when a drunk or frustrated patient arrived shouting, angry, and demanding attention, we didn’t have security guards to call. The nearest nurse or doctor dealt with it alone, because everyone else was busy.
Had I shouted back or insisted on respect, things would almost certainly have escalated. Instead, I was encouraged to pause and consider what might be driving their behaviour - fear, pain, confusion, illness - and build some trust. Shouting was rarely what they needed.
Quiet respect, calmness, and gentleness de-escalated the situation surprisingly quickly.
I’m told that times have changed - that healthcare is more pressured and staff no longer receive the professional regard they once did. I no longer work as a nurse, and I can see how frenetic the world has become. When I trained, I felt hugely respected - receiving a free newspaper as I passed a news vendor, free taxi or bus fares, and even free theatre tickets if a couple of us waited at the box office. Things have certainly changed.
But specialists in dementia, and charities that offer guidance and help, also support the view it is the carer’s approach that, more often than not, needs to adapt.
Most of Us Aren’t Professional Carers
In everyday relationships, we’re constantly adjusting - compromising, communicating, caring - while coping with our own stresses and family dynamics. Even at the best of times, relationships are hard work, requiring commitment and compromise.
And our loved ones aren’t patients - they’re family, with all the complexity that brings. So when dementia enters the picture, behaviours that might once have been minor irritations can feel utterly overwhelming. Patience wears thin, logic fails, and emotions run high - on both sides. It’s so easy to feel utter despair.
Changing My Approach
However, understanding the professional approach eventually helped me - though it didn’t feel relevant or even possible at first.
In the early days, when things became challenging for Milly and me, I corrected her. I argued. I tried to explain. I leaned heavily on my knowledge as a nurse and logic - and it left us both exhausted and upset. It took time for me to recognise what was happening.
It wouldn’t be natural to instantly think, This isn’t her fault. Because some of her behaviour was typical of her!
But I could also see that my approach was making things worse. Rather than feeling supported, Milly became more anxious around me and increasingly resistant to my suggestions and solutions.
I realised I was getting nowhere. This wasn’t stubbornness. It wasn’t refusal.
Milly had lost abilities she once relied on - and no amount of reasoning could bring them back. I had to adapt. She could not.
Adapting with Patience
That’s when I returned to what I’d learned as a nurse. As a professional, I didn’t argue my way forward. I had to slow down, adjust, build trust, and create safety step by step - knowing that progress may be tiny, but still meaningful.
Seeing Milly through this lens, rather than through frustration or blame, changed how I relate to her. It made kindness important, and that helped make things possible. I was able to see Milly behind the dementia - not just my mother, who has always had her quirks, but a human being navigating a confusing and frightening world.
When I think as a nurse, I look for meaning in Milly’s words, not accuracy.
The more I notice her vulnerability, the more patience I can offer. The annoying moments don’t disappear - but they certainly feel less overwhelming.
A Daily Example
Every morning, I put Milly’s pills in an egg cup and tell her to take them with or after breakfast. Every day - literally every day - the tablets remain in the cup. I used to ask why she hadn’t taken them, and she would always ask if she should.
“Who else are they for, for goodness sake?” I’d ask, exasperated. I’d feel like throwing them at her!
In time, I reflected and realised she was worried about timing. She has a memory of taking tablets at specific times - an hour before before food or only after food, for example. She didn’t take them because she didn’t know when they were to be taken.
Now I leave them but say nothing, and after breakfast I go in and if she hasn’t taken them, I shake the cup with the tablets, and say, “Time for your tablets, Milly!”
Practical Ways I Create Safety
There are lots of things I now do to create a safe place for Milly, but three simple acts I do every day - and they help me care for her with more kindness.
Firstly, I don’t tell Milly about visits or appointments in advance.
They make her fret, and memory fragments get caught in a loop:
Where am I going?
When am I going?
Why am I going?
Who’s coming?
What do I need?
Where do we have to be?
What time are we going?
Even when she already knows the answers, the idea creates anxiety. Repeating explanations only frustrates us both, so I tell her as close to the time as possible, calmly and simply - never rushing, never alarming. I don’t mention anything unusual or remotely threatening, like a dementia review. I stick to things she finds normal and understandable. If a friend is visiting it’s because they were passing by not because the meeting had been booked.
Wellbeing Over Expectations
Secondly, I no longer prioritise the needs or expectations of others over Milly’s comfort and wellbeing.
She has always been a thoughtful, caring friend - sending cards, making calls, and checking in on others - and I know she’d worry about disappointing people. In fact, she regularly masks her feelings, telling people she’d love to see them or that she’ll definitely talk to them on their birthday, even when she really doesn’t want to. I used to share that concern, but it became too much for me, and unhelpful.
Now, if others struggle to understand why she doesn’t want to talk or meet, I accept that it’s not my responsibility to justify her choices or the things that help her. My approach has evolved as her dementia has progressed and my understanding of her needs has deepened. This allows me to decline visits or celebrations, even birthdays or Christmas gatherings with more confidence, and in a way I hope feels more respectful to everyone.
Meanwhile, if Milly chooses to stay in her nightdress and dressing gown all day, I regularly let her. In fact, I actively encourage her because it’s something she would never have done in the past - far too decadent! Now, I tell her it’s wonderful that she’s so relaxed, that most of us do it some days, and that it’s good for us.
If she puts a piece of clothing back on that needs washing, I gently point it out, but it rarely matters to her. She still cares a little about looking respectable if we’re going anywhere, and I support her dignity as needed - not to meet others’ expectations, but to honour her sense of self.
The Comfort of Predictability
Thirdly, I stick to a routine that suits me - written clearly on a whiteboard Milly can look at for reassurance.
The daily routine also suits our family: I try to get her up at the same time each day, take her for two-hourly walks, with her zimmer frame, around the kitchen or for trips to the toilet, and I keep other regular patterns in place. Sticking to this helps her ask less about what is happening next. She mainly has queries about the following day, which is where the whiteboard comes in.
Milly didn’t like the whiteboard at first and asked why it was necessary. “I know what’s happening!” she’d say. I told her it was for me, so I could keep up with her busy life. Over time, after a year or so, it became an anchor for her and brought some calm. I also used to write little uplifting messages that I knew meant something to her and might make her smile, like “Those that matter don’t mind; those that mind, don’t matter.” or “In time of test, family is best”.
Now, Milly lives with us, so the whiteboard is less important because we’re always around to confirm what’s happening. But I still update it every week or so, just in case. It also helps me if I’m feeling impatient - I point to the board while I take a deep breath!
We also have a small camera in her room to alert us to movement. Since she fell and broke her femur, she needs to use the frame all the time but tends to forget, so we try to catch her before she starts something that might end in disaster. We’ve told her the camera’s there, but she’s forgotten - and she laughs, saying, “You always come in just as I’m about to get up!”