What to say, and what NOT to say, to someone who is terminally ill

ddOne year ago, my husband’s sister, Ksana, was diagnosed with a brain tumour. She was operated on, and was given a year to live. The doctors were right, and she passed away a few weeks ago.

When someone is dying it’s really difficult to know what to say and do, and what not to say and do.

So what do you say? What can you do?

There are some very important things that you really should say. You should say, “I love you.” You should make sure that the person knows that whatever else has happened in their lives you still love them, you will always love them.

This is the time to say, “I forgive you.” It’s the time to make amends. It’s the time to say, “Please forgive me.” And it’s time to say, “Thank you.” Do this as soon as you can, because you never know when you won’t have the chance again. Some wise person once said that one day, you’ll either say, “I wish I had,” or “I’m glad I did.” That’s so true.

If someone is dying, you can’t say, “Get well soon,” because you know they won’t. Don’t tell them stupid things like, “You’ll beat it,” or, “Everything will be okay,” because for someone who’s dying, it’s patently not the truth and they know that it’s not the truth. If you want to share how you’re feeling about the fact that they’re dying, you could say something like, “I wish this wasn’t happening to you.”

It’s hard to say, “How are you?” because it’s fairly obvious how they are—and often it’s painful to hear how they are. But what’s wrong with them can’t be just an elephant in the room, something that you avoid talking about altogether. You could ask, “How are you feeling today,” and then be prepared to listen to their answer. Let them talk as much or as little as they want to, then make sure they know that you are there for them.

Another thing that people say all too often, is, “Call me if you need something.” That’s not useful at all. Nobody is going to call anybody, asking for help. It’s much more sensible and helpful to say, “What do you need?” or, “What can I do?” and then listen to the answer. Better still, be mindful of their needs and the needs of their carers, and suggest that you bring over food, pick up medications, wash their clothes, clean their kitchen or bathroom, feed their animals, pick up shopping, drive them to a doctor’s appointment or be part of their practical care.

Don’t tell them, “I know how you feel,” because you don’t how they feel. You have no idea what they’re going through in their own minds. Everybody deals with this a different way. Nor do they want to hear stories of your own struggles when somebody close to you died. They don’t want to hear how you felt. They don’t want to hear stories of other people dying.

Also—and this is hard for some people to hear—unless you are totally certain that your beliefs are the same as theirs, it’s not very useful to say things like, “I’ll pray for you.” Don’t tell them that everything is God’s will, or that God doesn’t give you more than you can bear, or that they’re going to a better place—especially if they’re not a believer. This is not the time to convince them of your own religious beliefs whatever they may be, and however strongly you believe them. You can say, “I’ll keep you in my thoughts,” and leave religion out of it—unless you’re totally sure that they believe the same as you.

Sometimes it’s difficult to come to terms with your own grief, but allowing your grief to overwhelm you when you are with someone who is dying can also be very difficult for them. Be mindful of this.

Visiting or calling is very important. Don’t put it off. But what do you talk about when you visit somebody who you know won’t be here for much longer? Some people don’t call in because they don’t know what to say. Don’t be that person.

You can tell jokes, you can look through old photographs, you can suggest podcasts or audiobooks that they might want to listen to, or suggest films they may want to watch or music they may want to listen to—and make it easy for them to do that. Share the experience with them. Bring the DVD and watch it with them, listen to the music with them—make sure that they can manage the technology. You can share funny stories that you’ve read, or funny videos from YouTube.

But one of the best things to do is to remember your shared past. Have conversations about the things you’ve learned from them, or learned together. Talk about the things they’ve achieved, the legacies they’ve left, the memories you have of them. Help them to feel that they were important in your life. Tell them what they meant to you, how they affected your life, the things they’ve done that you were proud of, their successes, your shared friendships, your fun times, your shenanigans. These are the things that you can talk about with them that will enrich the time they have left.

I can’t emphasise how important it is to make time for them—because in the future you won’t have that time. Take them out if they want to go out, treat them—because you won’t have that chance much longer. Take them for a meal or a drink or a movie.

Finally, support their caregivers.

I read a really useful description of the care circles surrounding a dying person. The writer suggested that you imagine concentric circles. At the centre is the person who is dying. They are the most important person in this picture. They should only experience support and love. In a circle around them is their closest family, the people who are providing the immediate care for that person. In a circle around them, close friends. Further out are casual friends, acquaintances et cetera. Decide where you are in those concentric circles. Your job then is to support those people inwards and only complain to those people who are in your circle or are further out.

The person who is dying should never hear you complain. They should never hear how difficult it was for you to get down to see them, they should never hear how you don’t think they’re being looked after very well. You should support the immediate carers and give them all the help you possibly can. Their lives have been disrupted far more than yours has. Their grief is greater than yours. Their pain is constant. It’s not your place to whinge about your difficulties to anybody closer to the centre of the circle than you are. Support inwards. Vent outwards.

You often hear people say life is not fair. Believe me, death is not fair either. We just have to make it as good as it can be for those who know they are travelling towards it.

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Posted in observations, The Family Memory Project, writing
2 comments on “What to say, and what NOT to say, to someone who is terminally ill
  1. Geraldo Forte says:

    Sensible, practical advice and easy to both remember and follow. I have printed it out and bookmarked it to send to others who might need it.

    Much appreciated :)

  2. Dallas Pegrum says:

    Thank you. Having been alongside my husband for his nine year battle with Motor Neurone Disease I endorse everything that you have said.

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