What the person beside you sees
The most accurate account of how a condition affects daily life usually belongs to someone who has never been asked to write anything down.
This one is for the partner, the parent, the adult child, the housemate. The person who has been at every appointment and has never been asked a question.
You hold information that nobody has collected. Not opinions about the condition: observations about the days. And in a file that runs to hundreds of pages of clinical correspondence, that is often the part that is missing.
Why you can see what the clinicians cannot
A specialist sees twenty minutes, in a clinic room, on a day the person was well enough to attend and had prepared for.
You see the four days afterwards.
You know what the preparation cost. You have seen the difference between the version of them that turns up to an appointment and the version that exists at half past four on a Thursday. You know which tasks moved to you and when, because you were there when it happened.
None of that is available to anyone else, and almost none of it is written down anywhere.
What you have probably absorbed without noticing
The most useful thing you can do is take an honest inventory of what you now do that you did not used to.
It tends to have happened slowly. Nobody sat down and reallocated the household. One week you started doing the shopping because it was a bad fortnight, and it never went back. Then the bins. Then the driving on certain days. Then remembering the medication, and then filling the chart, and then booking the appointments.
Each step was small and sensible. Cumulatively, you may now be doing a substantial amount of work that exists nowhere in the record, because a need that is being met stops looking like a need.
That is the thing worth writing down.
What to write
The same four elements as any useful account, but from your side of it.
What you do. Specifically. Not "I help a lot" but "I put his socks on most mornings" and "I do all the driving after about 2pm."
How often. Every day, most days, bad weeks only.
How long it takes you. Including the things that are quick but constant.
What happens if you are not there. This is the one only you can answer. If you were away for a week, what would not get done? That question tends to produce the clearest picture anyone will get.
Add anything you have noticed that they have not mentioned, and be prepared for the fact that they may not have realised. People adapt to their own decline and stop seeing it. You did not adapt in the same way, so you still notice.
Two things to be careful about
Write observations, not conclusions. He struggles with everything is a conclusion and cannot be assessed. He stopped carrying the shopping in about two years ago, and now I do it in two trips instead of one is an observation, and it is worth more.
Show them what you have written. Two reasons. It is their life, and they should have the chance to correct anything you have got wrong. And it can be a difficult document to read: an itemised list of what someone can no longer do is a hard thing to encounter without warning. Do it together if you can.
Where it goes
Give it to the treating clinician before the appointment rather than during it. A GP with fifteen minutes cannot take a detailed history from a second person in the room, but they can absolutely read a page beforehand and assess what it describes.
If a functional assessment is happening, say up front that there is a carer account available. Assessors will usually want it, and it is easier to offer than to be asked for.
Keep it dated, and update it occasionally. Things change, usually gradually, and a record from eighteen months ago will already be out.
The part nobody tells you
There is one more thing worth naming, and it sits slightly outside the point of this article.
Everything above frames you as a source of information about somebody else. That is what a file needs from you. But the work itself is real, it accumulates, and it has consequences for you that nothing in that file will capture.
Carer supports exist, in various forms, and they are separate from whatever is happening with the person you support. It is worth finding out what you are entitled to in your own right, not as part of their application, and not as an afterthought to it.
Most people in your position have never looked, because they do not think of themselves as a carer. They think of themselves as a spouse who does a bit more than they used to.
Observations drawn from published Tribunal and Court reasons, current as at the compilations cited. Nothing here is legal advice, and nothing here predicts an outcome. Every file turns on its own facts.