Some things are hard to ask about. Nobody finds them easy. These are the ones that come up most often.
They won’t eat. How do I deal with it?
Gently, and without pushing. This is often the hardest part for families, and it helps to know that hunger isn’t really what’s uncomfortable at this stage: a dry mouth is. So the care shifts from feeding to keeping the mouth comfortable: a sponge dipped in water, a few ice chips, a little lip balm, every hour or so. It’s hands-on, and it’s yours to do.
If they’d like a taste of something they’ve always liked, do give it. It isn’t nutrition and it doesn’t need to be.
There’ll usually come a point where swallowing has become a struggle, and that’s generally the time to stop offering, though it’s rarely a clear line, and nobody expects you to know exactly when. Until then, if you’d like to keep trying, keep trying. Nearly everyone does, and it does no harm at all.
And if it helps to know: they haven’t stopped eating and then begun to die. It’s the other way round: the not eating is part of the dying, and it’s come about because of the illness, not because of anything you did or didn’t manage to get them to take.
Why are they sleeping so much?
It builds gradually, and it isn’t the medication. Sleep is what the body does as it slows down.
They’re talking to people who died years ago.
It happens more often than people realise, and it isn’t a sign that anything has gone wrong. It tends to unsettle families more than it troubles the person themselves.
Can they still hear me?
Hearing is thought to be the last thing to go. Talk to them as you always would.
Their breathing has changed.
It often becomes irregular towards the end, with long pauses and then quicker breaths. It’s unsettling to sit with, and it isn’t a sign of distress.
The breathing sounds noisy and it’s upsetting to listen to.
That’s usually fluid at the back of the throat. It sounds far worse than it is, and it doesn’t seem to trouble them. Turning them onto their side often helps, and it’s always worth mentioning to the district nurse.
Their hands and feet are cold and mottled.
The circulation draws back towards the middle of the body, and this usually means things are close. They aren’t feeling the cold, but put a blanket on if you’d like to.
We’re worried about the morphine.
It’s a very common worry. Pain relief given properly is there to keep someone comfortable, and it’s better used than held back. If you’re unsure, ask the GP or district nurse to talk it through with you.
Wouldn’t a drip help? They must be so thirsty.
It’s an understandable thing to want, and the team looking after them will advise if it would help. What’s usually behind the feeling of thirst is a dry mouth, and that you can do something about.
They’ve started a syringe driver.
It’s a way of giving medication to someone who can no longer manage tablets. It doesn’t mean things have suddenly changed.
There’s a DNACPR form, or a ReSPECT form.
These record what someone would want, so that the focus stays on their comfort and their wishes. All the ordinary care carries on.
They seemed so much better yesterday.
This is a recognised phenomenon in end-of-life care, and one that families, carers and healthcare professionals all witness. Someone can have a bright day, talkative, sitting up, more like themselves, and then the following day be sleepier, and begin to fade again. It isn’t uncommon, and for many families that day is a lovely thing to have had.
I think they’re in pain, but they can’t tell me.
Restlessness, a furrowed brow, tensing when they’re moved; any of that is worth mentioning to the district nurse. You don’t need to be certain first.
What do I do when it happens?
Nothing quickly. Ring the district nurse or the GP surgery, and somebody will come. It may take a little while, and that’s alright.
Until then, sit with them. There’s no clock running, whatever it feels like.
And afterwards?
The funeral director can be rung when you’re ready. They can’t collect until the death has been verified. Some families want them straight away and others sit for a few hours. Both are entirely normal.
Leave the medicines where they are for now. Equipment gets collected once you ring the number on it, and there’s no hurry.
The GP completes the certificate and sends it to the registrar. Registering happens within a few days, by appointment, once you’re told it’s ready. Take several certified copies with you, as banks and pensions all want originals.
The registrar will give you a Tell Us Once reference, which notifies HMRC, DWP, pensions, the DVLA, the council and the passport office in one go.
Everything else can wait, whatever the letters imply.
This content is for information only and does not replace professional clinical advice or a formal diagnosis from a doctor.