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I am currently part-way through handing over the dressing part of my day, and it is a strange phase to be in.
PSP does not switch abilities off cleanly; it dims them unevenly. Some parts of the day I am more awake and more balanced; at others, much less so.
For now, on many days, I still largely dress myself, although it takes far more time and care than it once did. I do it sitting in my wheelchair (brakes very firmly on), using techniques I learnt, of all places, from YouTube videos, and I finish the rest using the grab rails in our specially adapted bathroom. It is slower. It requires planning. But it is still mine.
On other days I outsource parts of it, or almost all of it, to my live-in carer or my wife.
That has led to a small discovery.
The three of us do not dress me the same way. (That is not an easy sentence for me to write at 51, but then again, none of this is.)
My carer has a method. My wife has a method. I have a method. They differ in speed, in order and even in how a single item of clothing goes on. We even have different ideas about what clothes I should wear. To many people these differences would seem trivial. To me they are not. They are part of my dignity.
Before I go any further, though, this is not an article about carers getting it wrong. Far from it. Caring for someone is physically demanding, emotionally draining and often relentless. Whether they are family members, friends or professionals, most carers are simply doing their very best. This is really about helping patients and carers understand each other a little better.
Dressing is simply the example that made me think about all of this.
Washing, eating, moving and being helped in and out of bed all become shared tasks at some point on this journey, usually far sooner than any of us would ever have imagined.
For me, dressing is one of the important handovers, and one I am reluctant to make. It requires trust, gentleness and respect. The thought of a day when I may no longer be able to explain how I like things done, if my cognition declines or I lose the ability to communicate, sits quietly among my greatest fears.
What strikes me is how differently patients experience these handovers. For some, dressing is deeply personal, bound up with dignity and a lifetime of doing things a certain way. For others, it is simply another task. Neither response is right or wrong.
That is why asking, listening and understanding matter.
The patient experience is built not only from medication, swallowing assessments and mobility scores, but also from hundreds of ordinary moments that rarely appear on a medical chart. Whether I was dressed in a way that still felt like me, or simply dressed, will never appear on a medical chart. Yet to me, the difference can shape the whole day.
So my request to carers, family members and healthcare professionals is a simple one.
Before taking over a task, ask how the person likes it done.
Then ask how much it matters.
The answers may surprise you.
And to patients, I would offer exactly the same challenge in reverse.
Tell people what matters to you. Explain why. Don’t assume others know. But also be generous when things are done differently. Most of the time it is not carelessness; it is simply another person’s way of doing something while carrying the many physical, emotional and practical demands of caring for us.
Many carers are spouses, children or friends. Others are professionals, often working long hours for modest pay. Almost all are giving something of themselves, whether that is their time, their energy or simply their love.
Perhaps dignity is not only about being listened to.
Perhaps it is also about listening to those who care for us.
The best care is built on both.
