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Katie Costello is a soul midwife, funeral celebrant and accredited death educator. With a powerful voice and a heart-led approach, she supports individuals and professionals across the UK through the realities of death, dying and grief. In this guest blog for Nursebuddy, she shares with care workers what to expect and what to look out for when someone is approaching the end of life.
For more wisdom and advice, see Katie's podcast and masterclass, Dying for a Cuppa .
It's always really encouraging when people want to delve into the world of death and dying or even have a conversation about it. I think as a society, as a community, as people, as human beings, we all need to get better at death. We all need to get better at having the conversations, about recognising it, about being able to face it.
Being with somebody at the end of their lives is huge. And as a domiciliary care worker who is helping people at home, your role is one of the most valuable roles in healthcare. You build connections with people. You become their friend. Sometimes you might be the only person they see in a day. So you are the person who will be able to recognise when they start to approach the end of their life.
But what I’ve realised working in end of life care for the last 13 years, is that there is no training for this. Nothing can really prepare you for the emotions, but actually if you can understand what you're going to witness when a body starts to die, if you can recognise the changes that people go through as they start to die, you can be more prepared and that can in turn support you personally and professionally.
So here are 4 important signs to recognise when people you are caring for are approaching the end of their life.
Jump straight to:
Sleep
One of the big things you will notice is that people start to sleep more. They may not be awake at your 8:00 visit that you normally come in for. Or they may need your help to rouse, e.g. you might need to poke and prod them a little bit to let them come round. It might be that you start seeing them sleeping more at your lunchtime visit. It might be that when you go back for the tea time visit, the lunch is still sat there because they've actually slept through it and they're not hungry. It's all natural. When the body starts to die, it naturally slows down, becomes a lot weaker, and the muscles become weaker, and it needs to rest through the process. So you will notice your people sleeping a lot more.
Mojo
Another thing you'll notice is what I call mojo. You'll start to see people experiencing a lack or a change in their mojo. So somebody that maybe loved going to bingo and you normally take them to bingo every Tuesday suddenly says: "Oh, I just can't be bothered. I'm just not feeling it." Everything becomes a little bit challenging. But then what can be difficult is the next day the person says: “I've not been out this week. I'm stuck indoors." But if you offer them to bingo, they still don’t want to go. That's the mojo. So people start to really shift. There's a lot there's lack of confidence that people start to feel. And this comes no matter the age. This comes with illness and deterioration of our physical bodies in general. But you'll notice that lack of mojo affects what people enjoy, the people that they would normally connect with, the things that they would do for their mental health, their wellbeing, just to keep them active or to get some fresh air. All of those things start to seem a bit more challenging
Emotions
You’ll likely find that people become more emotional about what might seem like innocuous things. For example, somebody might be really stressed or anxious one day about the fact that Tesco's didn't deliver enough carrots. It's not the carrots. It's something else that is changing in their life that they don't have control over. Perhaps they were incontinent and that's never happened before. Or there's another doctor's appointment and test results they’re worried about. It's the emotional stuff behind that, and this is what comes up for people as they start to approach the end of their lives. It's not always necessarily obvious. And as carers, you are the people that will pick up on that.
Appetite
The other big thing that you’ll notice is that people will start eating and drinking a lot, lot less. So you will know people that you've looked after that in the beginning, whether it was weeks or months or years ago, you might have gone in and cooked them a full English. Now they're maybe having half a bowl of porridge. You'll leave somebody a cup of tea and their glass of orange at lunch and you go back and they've not touched it. All of that changes very naturally because our bodies are instinctively getting ready to shut down. The body doesn't need to eat or drink as much as it starts to die.
Now, this is so hard because it goes against the grain. This isn't what society tells us we should be doing because we should be feeding and watering and nurturing. It's so hard to get your head around. But a dying body can go weeks if not maybe even months without food. A dying body doesn't need to eat so it's not starving like a healthy body is. It’s a natural and normal part of the dying process. But if you need to try and explain that to somebody, the best line you can use is this: People are not dying because they're not eating. People aren't eating because they are dying. It switches the mindset. It changes the narrative of, "Oh, I need to feed somebody because we need to keep them going." to actually realising that it's okay. It's a natural part of the dying process.
Watch on-demand:
For more, catch-up on Katie's webinar about how to offer meaningful support to people at the end of life.
Katie Costello is a multi-award-winning accredited death educator, soul midwife and funeral celebrant. Working alongside cancer support groups, end-of-life charities, hospices and care organisations, Katie delivers compassionate education and deeply personal support. She brings honesty, clarity, and humanity to some of life’s toughest conversations. Find out more at Dying for a Cuppa .
