And Milly & I Share the Same Needs
Theme: The Beauty
Quick Take
Dementia is the disease we fear the most.
Might the needs of a person facing a changing world be the same as the needs of a person facing a changing brain.
Dementia reminds me to slow down and revel more in the simple things that bring me comfort, connection, laughter and a sense of purpose.
The Health Condition that is Feared Most
According to Alzheimer’s Research UK, half of people in the UK say dementia is the health condition they fear most. Yet caring for Milly has led me to an unexpected thought: might dementia be teaching me how to live well in this increasingly chaotic world?
I don't want to romanticise dementia. It can be brutally hard. But living alongside it has changed how I think about what matters in life.
Milly and I Share Basic Human Needs
Beneath our very different circumstances - a changing world and a changing brain - we both need to feel safe in a world that sometimes makes little sense.
A World Changing Faster Every Day - for both of us
There are huge and complex issues in our society, and many of us struggle to find perspective. Through our screens, we are exposed to a relentless stream of distressing news: racism, misogyny, the disruptive potential of AI and, even more frighteningly, the ambitions of despots. We absorb ever-increasing amounts of information, feel compelled to form opinions and try to keep pace with a world that seems to be changing faster by the day.
Meanwhile, having spent much of my career as a nurse in the NHS and in public service, I have watched dementia become an increasingly pressing challenge for individuals, families and our social care system. I’ve also seen how a lack of specialist knowledge and support compounds the distress of dementia, leaving families struggling and professional carers without the resources or training they need. Good care can make an enormous difference.
Caring for Milly has brought home to me just how much difference specialist knowledge can make. As my husband and daughters have learned to ease the anxieties and worries that once occupied her, the more carefree and fun-loving side of my mother has been able to flourish. Not because dementia has made her life better, but because we understand now what she needs to feel secure. The change has been remarkable.
Accepting Milly’s Reality
We accept my mother’s reality rather than constantly trying to bring her back to ours. We try to understand what frightens her instead of insisting that she has nothing to fear; and we create a life that feels familiar, loving and easy.
By letting go of expectations that matter more to the outside world than they do to my Milly - whether that means overlooking a stained jumper or mismatched clothes - and by keeping her life simple, I see a much greater sense of peace. This might mean reassuring her time and again that I’ve already spoken to a relative or sent a birthday card, or that a bill has been paid and there’s no deadline for her to think about. By removing these pressures, I create more room for pleasure, laughter and moments of genuine fulfilment, rather than focusing on the things dementia has changed or taken away.
More Conscious of What I Might Take for Granted
And perhaps this is where Milly’s experience has made me more conscious of something I can too easily take for granted: the relative safety of my own life.
I can sit quietly and stare out of the window.
I can switch off the news, put aside tomorrow's worries and enjoy the simple pleasures of an ordinary day.
I can even take the time to repeat an answer for the hundredth time.
My Home is Not Likely to be Bombed
And I’m not at risk of being tortured for speaking my mind or of violence erupting on my doorstep. I have the freedom to feel at ease, to be still and sometimes simply to be thankful. Perhaps I have not appreciated that enough.
Do I Need So Much Information?
It has also made me question how I respond to turbulence and fear. When I feel threatened or overwhelmed, my instinct is often to seek more information and control. Sometimes this helps. Sometimes it adds to the pressure.
My darling demented mother has taught me to reflect on what makes me feel grounded: familiar routines, being with the people I love most, plenty of quiet, watching the birds or the leaves blowing in the wind, and the freedom to let go of expectations that serve no useful purpose.
If I were to see dementia only through the lens of tragic advertisements and dramatic film portrayals, I’d risk perpetuating fear and overlooking what can still be done to make life better. Dementia is devastating, and I would never wish to minimise its impact. But acknowledging the losses does not mean that life has nothing more to offer.
A Changing World and a Changing Brain
I can’t make every uncertainty disappear, whether it comes from a changing world or a changing brain. But creating a sanctuary for Milly is teaching me so much: when I cannot control what is happening around me, I can slow down and revel more in the simple things that bring me comfort, connection, laughter and a sense of purpose.