There’s a question I wish we asked more often when someone is dying.
And what about you?
Not the person who is ill, the person making the tea.
The one keeping track of the medications, answering the phone, changing the sheets, driving to appointments and remembering what the doctor said.
The person sleeping with one ear open.
The person saying, “We’re okay,” when somebody asks how things are going.
You.
If that’s you, I’d really like you to know something.
Caring for someone you love can be one of the most tender and meaningful things you will ever do.
It can also be absolutely exhausting.
And both things can be true at the same time.
You get very good at carrying on.
There are around three million unpaid carers in Australia.
That’s almost one in eight of us. (Australian Bureau of Statistics)
Which means there are an awful lot of people quietly doing this every day.
You learn the medications.
You know which pillow works.
You become strangely interested in bowel movements.
You know what they’ll eat when they don’t feel like eating.
You know the difference between sleeping and sleeping in a way that makes you get up and check.
You become the person everyone rings.
And somewhere along the way, without really deciding to, your own life gets smaller.
Not necessarily unhappier.
Just smaller.
Dinner with friends becomes difficult.
Going away feels impossible.
Even popping to the shops can require military-level planning.
And if someone tells you that you really should “take some time for yourself”, you may have to resist the urge to throw something at them.
Because you know you need a break.
You just don’t quite know who is going to do all the things while you’re having it.
Then, one day, the caring stops
When someone has been very ill for a long time, we sometimes imagine that their death will bring a kind of relief for the person caring for them.
And sometimes it does.
We need to be able to say that without feeling dreadful about it.
Relief doesn’t mean you wanted them to die.
It can simply mean that someone you love isn’t suffering anymore.
Or that, for the first time in months, you don’t have to listen for them in the night.
And then there is grief.
And exhaustion.
And a house that can suddenly feel terribly quiet.
The medications are gone.
The equipment is collected.
There are no more appointments to remember.
Your phone stops ringing quite so much.
People go back to their lives.
And everyone tells you: Now you can rest.
Except your body may not have received the memo.
You might still wake at 3am.
You might hear something from the other room and listen.
You might automatically reach for your phone.
You might stand in the supermarket and discover that choosing something for dinner feels completely beyond you.
Or you might simply feel bone tired.
Not “I need an early night” tired.
Something deeper.
You have been watching, anticipating, organising, loving, worrying and responding for a very long time.
It makes sense that you can’t simply switch that off.
There’s another loss we don’t talk about much
When you’ve cared for someone for months or years, caring becomes part of the shape of your day. Sometimes part of the shape of you. You were needed. There was always something that had to be done next. Then suddenly there isn’t.
People may encourage you to “get back to normal”.
I’ve never been terribly fond of that expression.
What is normal?
The life you had before all this may not exist anymore. And perhaps the task isn’t to get back to anything. Perhaps, very gently, it’s to find out who you are and what your days might look like now. There’s no timetable for that.
If you know someone who is caring, don’t wait for them to ask This is probably the most useful thing I can tell you. Please don’t say: “Let me know if there’s anything I can do.” It’s beautifully meant. But you’ve just given an exhausted person another job.
Instead, try:
I’m making lasagne. I’m bringing you some.
I’m going to the chemist. What can I collect?
I’ll sit with Dad on Thursday. Go and have a coffee.
I’m taking the dog for a walk.
I’m free between two and four. What needs doing?
Nothing heroic.
Quite often, the most useful acts of love are incredibly ordinary.
Put the bins out.
Change the sheets.
Bring milk.
Make tea.
Sit down.
And perhaps most importantly, notice the person doing the caring.
Ask them how they are.
Then give them enough time to work out the answer.
And please, please keep showing up afterwards
The first few days after a death can be incredibly busy. There are flowers and messages and food and people everywhere. Then the funeral happens. And gradually everyone goes home.
This is when I think we could all become a little better at caring for each other.
Ring three weeks later. Then six weeks later. Remember the birthday. Remember the anniversary. Invite them even if they’ve said no the last four times. Drop something at the door and don’t expect to be invited in. Let them talk about the person who died. Say their name. And if they tell the same story again, listen again. They aren’t doing grief incorrectly. They’re finding their way through a life that has changed.
We need to get better at this
Australians overwhelmingly talk about wanting to remain at home as they approach the end of life, where circumstances allow. But caring for somebody at home depends on far more than a hospital bed and a visiting nurse. It depends enormously on the people around them — partners, children, friends and family — doing the ordinary, relentless work of caring.
If we want people to have more choice about how and where they die, then we need to talk much more seriously about how we support the people who make those choices possible.
And perhaps it begins with something very small. When everyone is asking about the person who is dying, turn occasionally to the person beside them. Put the kettle on. Pull up a chair. And ask: