Your friend has dementia and you do not know what to say

The message that does not make sense

A text with words in the wrong order. A voicemail that starts mid-thought and trails off. Three calls in an hour and nothing in any of them you can act on.

The instinct is to work out what they meant, and that is the wrong question. The message is rarely about its content. It is somebody reaching for a person who has always been on the other end.

Which means you do not have to understand it to answer it well.

On being told not to respond

Family sometimes ask friends not to reply, and it is almost always said for a reason that makes sense from inside the house: repeated calls that escalate, distress after every conversation, a pattern somebody has watched up close and you have not.

Take it seriously. Also notice what it usually means, which is do not engage with the content. It rarely means disappear.

Worth asking the family directly and in plain terms: would it help or hurt if I sent her a card every couple of weeks. Can I call on a Sunday. What should I not bring up. People who ask that question almost always get a usable answer, and they stop guessing.

What to say when you cannot follow what they said

Answer the feeling rather than the facts. If it sounds worried, say that sounds worrying, I am here. If it sounds cheerful, be cheerful back.

Do not quiz, do not correct, do not test. Do you remember who this is is a question with a wrong answer in it, and the wrong answer is humiliating.

Say your name early and without ceremony. It is Carrie, I was thinking about you. That removes the thing they were about to have to work out.

Keep it short. Ten warm minutes is better than forty confusing ones, and you can call again on Thursday.

Small and often beats big and once

The friends people remember are not the ones who flew out for a week. They are the ones who sent something every couple of weeks for three years.

A card with four sentences in it. A photograph from 1998 with a note saying I still have this. A voice note saying nothing in particular. These work partly because they do not require a reply, which removes the pressure on everyone.

Cards specifically come up again and again, because they can be read more than once and they stay in the room after you have gone.

The other person you can help, who nobody is helping

The carer. Usually a daughter, usually drowning, usually being asked how is she by everybody and never how are you by anybody.

You can be the person who asks the second question, and it costs you a text. A caregiver will tell you that one friend who asks about something other than the patient is the difference between a bad year and an unbearable one.

If you want to do something concrete, do not offer to help. Offer a specific thing on a specific date, because let me know if you need anything is a sentence caregivers describe as meaning nothing at all.

You are not family on paper, and it will show

Hospital forms have one box and it is not for you. You will not be told things. Decisions will be made without you and you will hear afterwards, or not at all.

This is worth knowing in advance because it blindsides people. One person described being introduced by their own mother to a new aide as her friend rather than her daughter, and how that word landed. On the other side of it, friends describe being written down as friend on a form and feeling the whole relationship reduced to a category.

There is no fixing it. There is only deciding in advance that it will happen and that it is about paperwork rather than about what you were to each other.

Do not wait

For a better moment, for a diagnosis to settle, for an invitation, for the family to tell you what to do, for the version of them you remember to come back.

The window where they know your voice is open now and it narrows. Nobody who showed up regrets it. The regret described in these rooms, over and over, is the other one.