By Lesley Postle, Editor of GriefandSympathy.com
A friend of ours just reached out to tell us that someone she has known since childhood is dying of a brain tumour. She wants to ring her friend, but doesn’t know what to say and is afraid she will upset her.
My response was that nothing she can do or say can make it either better or worse, and that the best thing to do is just listen, and let her friend know that she cares and is there for her.
It occurred to me after that conversation, that after the year I’ve just had, I should be a bit of an expert on the subject of how to talk to someone who is dying. I just spent the last year supporting my ex-partner who was slowly dying of lung cancer which metastasized to his brain.
We had split up not that long before he was diagnosed. The first sign that anything was wrong was that he suddenly lost the ability to speak. My Mum and I rushed him to the emergency room and they found a large brain tumour. He had brain surgery and recovered enough to live independently in the house which we had previously shared together. I was living 10 minutes up the road, also trying tosupport my 82 year old Mum through nearly losing her house to the Australian bush-fires and through Covid.
My ex and I had parted amicably. We had had 15 happy years together, and in hindsight, our separation was no doubt partly due to changes in his personality in the year up to his diagnosis caused by the brain tumour which we knew nothing about.
During the 16 months between his diagnosis and when he died I visited or video called almost every day. At first, like our friend, I was scared of what to say to him. I learned a lot over the months about what helped and what didn’t, and he would often tell me what he wanted from me, and what he didn’t.
I’d love to say it got easier. In some ways it did, but I was always apprehensive about how he was going to be, especially as his brain tumours came back and meant that often he could be irrational, or irritable, or emotional. Other times he could be quite positive and hopeful.
It was the hardest, most stressful and emotional sixteen months of my life and I’m still grieving. (As I write, it is exactly two months since he died). In many ways, I also gained in resilience, strength and knowledge about myself. I also examined my own fear of death pretty deeply too. That is still a work in progress.
I’m writing this now, in the hope that it may help others that have to walk alongside someone who is dying.
I say walk alongside advisedly. You can’t do it for them. There is no point in you taking on all their pain and sadness or ending up drowning in guilt because you can’t do more. It is their journey. There is little you can do to affect the outcome. All you can do is your best.
So here’s a few bits of advice and things I picked up along the way which may help you face talking to your loved one who is dying without fear.
Things to Say
I’m here for you.
What do you need from me?
What can I bring you?
Can I help you with. . . (be prepared to accept a ‘no’ answer to this one).
Can I call anyone for you?
Talk about the weather, or what they had to eat today. Simple, non-threatening things.
Reminisce about happy memories you have shared together.
Things Not to Say
It must be awful for you.
I know how you feel (you don’t).
You should. . . . .
Do this or that.
Don’t do this or that.
Do not impose your religious views on them unless you are sure they share your faith.
Don’t keep asking them whether they are in a lot of pain or what symptoms they have today.
Don’t hold out false hope.
Some people will want to talk about their diagnosis, the fact they are dying, and some will not. They may be in denial or not know how sick they are. It’s best to take their lead and ask gentle questions to find out where they are in their journey. Some may never accept what is happening to them. (My ex was mostly in denial, but occasionally would admit that he thought he was dying.Even after the doctors gave him a few weeks to live, he would forget or deliberately not understand).
You could ask what the doctor said, or how they think they are doing. Never impose your opinion on the situation if you can help it.
You will soon realise if they don’t want to talk about it. Be aware of their avoidance techniques, like talking all the time so you can’t say anything. This is because they are scared of you saying something they don’t want to hear. Also, changing the subject is a strong signal they are not ready to talk about it.
My ex’s favourite expression was “I’m just hoping that. . . “ and he would have small goals that he hoped he would get better enough to achieve. I just tried to be encouraging about them, even though I knew most of them wouldn’t happen.
You may have to agree with a lot of things that you know are not true if they are in denial. You might know that they are not going to get better, but rather than being dishonest, you can be neutral, and say things like, ‘I hope so’ or ‘that sounds like a good plan’ or ‘I’m sure the doctor knows what they are doing’.
Don’t always just talk about their illness and their symptoms. Talk about the weather, the garden, other people they know, things that have happened. Try to keep it simple and help them to make the most of each day and small pleasures like the sun shining or a bird singing.
The person who is dying is still the same person inside. They are not just their disease. They still have the same interests they always had. They want to treated as the person they were, not a bunch of symptoms.
Usually they don’t want to be treated with pity or sympathy. They just want to live as normal a life as they possibly can, as long as they can.
So try to act normal. You don’t have to deny that they are sick, but you can acknowledge it, and then move on to other topics. We would talk about the news, art, TV programmes we’d watched. Just normal stuff.
Most of us are bad at this, me included. I had to train myself to stop trying to make things better and just listen. We can’t make things better usually, but we can be there and show we care by just listening. People who are sick usually just want others to try to understand and to acknowledge and witness what they are experiencing.
We can’t do it for them. It is their journey, not ours, and all we can do is be present. We don’t even have to talk. If they don’t want to talk, just sit quietly and be a calm presence.
In our desire to try and make things better, it is so tempting to give advice, whether it’s about alternative remedies, eat a better diet, get more sleep, find better doctors etc. etc.
What I would say, is just don’t.
No-one wants to be told what to do, and if they are dying, it’s unlikely to make much difference in any case.
It’s a different story if the person asks for advice. Let them be in control of their own health, and give support only if it’s requested.
This can be really hard to do. Our instinct is to help, to do everything for the person who is sick, but this only makes them feel more helpless and useless.
I’m the first to admit that I found this almost impossible, especially when my ex was obviously not coping and the house was becoming a mess. He refused to let in any home-helpers I sent, and kept trying to do things himself. I kept trying to persuade him to accept help. He would say yes, but then not open the door to the carer. Eventually he broke a rib trying to get a sheet out of the washing machine, and this was the final straw which got him into hospital.
However, up to that point, looking after the house and watering the plants gave him motivation and purpose which he wouldn’t otherwise have had. I think he would have given up a lot sooner if he had had all responsibility taken away.
He did ask for help when he needed it, and when he realised that there were things he couldn’t do. So, in my view, it’s best to wait and only step in when they are ready.
I wish you strength and courage on your journey with a dying loved one. It is a huge challenge and we all make lots of mistakes. Don’t be hard on yourself. Treat yourself, as well as others around you with forgiveness and compassion and don’t forget to look after you too. I practiced meditation virtually every day to help me accept what was happening and to surrender to what life was throwing at me. I also spent a lot of time in the garden and walking. It’s essential to make time to nurture your own well-being at times like these.
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