“My motto to support the grieving or the dying is simple: show up and shut up.  After acknowledging that the situation sucks, let them lead the way.  If they are silent, be silent with them.  If they want to talk about something benign, follow them there.  And if they want to talk about their pain, let them talk about their pain – not your experience unless you are asked for it.  Just be in the trenches with them and give the incredible gift of bearing witness.” Alua Arthur

Don’t worry too much about getting it right.  Just do it.  Just show up.

It is hard to show up.  You need to be brave.  You need to push through the awkwardness. There are no simple, ‘right’ way to do this.  But avoiding people because you are afraid or uncertain does nothing for me - except add to my loneliness.  

There is surprising power in small, brave acts of connection.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

Say less.  Keep it simple and short.  Make space for quiet and listening.    

If you are speaking most of the time, then that is not a good sign!

Please just listen.  Lots of words shuts me down.

“I love you” and “I am here” go a very long way.

It’s not all about words.  Sometimes I don’t want to talk.  But you can still show me that you see me with a hug, a text, a look, a smile.

My mother-in law was great.  She turned up regularly and cleaned and cooked and made tea.  There was no fuss.  She was calm.  We didn’t talk lots.  She just did things that said “I love you” and “I am here” in simple ways. 

Acknowledge them and their pain.  This sounds really basic, but it matters. 

The worst thing was when I felt people avoid me.  I could see them duck down a different aisle in the supermarket so that they didn’t have to see me.  And people I thought were friends seemed to disappear.  Some people did say things that I thought were strange or unhelpful.  But I would much rather have that than feeling invisible and ignored.

All they had to say was “I am so sorry to hear that he is sick”.  That was it.  Just that. Then,  if I wanted a chat I could.  And if I was too exhausted to talk to you about it, I would just say “thank you” and move on.

One of the most powerful things was when my husband’s boss saw me and literally crossed the street to come and speak to me.  He was with a group of people and obviously walking to an appointment.  But he still took 5 minutes to walk towards me, to say “Hello” and “This is tough”.  That’s all.  It meant so much. 

Be honest and real.  Say things in your own words. Try to avoid cliches and platitudes. 

I can’t tell you what to say.  But I can tell you that I can often feel when you are being authentic.  It comes from your heart.  It doesn’t matter so much then what the words are.  I get the real feeling of it.  The feeling matters more than the words.

Please don’t tell me “Everything happens for a purpose”.  My beautiful child is dying.  It is a terrible thing.  Please just let it be terrible.

When my wife was first diagnosed lots of people from her work world sent cards filled with deep quotes and words about how much that cared about her.  But none of those people actually turned up.  No-one visited when her went she went into hospital care.  None of those messages they wrote about how much they cared for her and valued her seemed true.  I think they were just saying things to make themselves feel better.

Ask and then listen.

If you are up for a real conversation  - ask something like: “How are you feeling?”; or “What is this like for you?”; or “What is the hardest part of all of this for you?”  And then listen, listen, listen. 

I didn’t know what was in me until someone asked me.

If you don’t have time to listen, don’t ask.  So, don’t ask me a big question in the middle of the supermarket when all of our ice-cream is melting!!  Instead say “Do you want to go for a coffee next week?”  And then make sure that you follow up with a text to actually arrange time for coffee! Don’t leave it up to me to reach out to you.

Be brave enough to sit with sadness and not knowing. Fight your urge to rush in and fix and comfort. Fight your urge to cheer them up. 

Just say these seven words: "Tell me more”, What else", "Go on".  That's all. Even if you are scared.  Even if you have no idea what to do next. Just say "Tell me more", "What else", "Go on". And then stay close and listen. Kelly Corrigan

Hold my hand.  Stay.  Show me that it’s ok for me to cry, or get mad, or say awful things.

Don’t judge me for being angry or frightened.  This is hard.  I am frightened.  I do get angry. I am sad. Let me tell you about it. 

We love the stories of the person who is brave, and still full of energy, and arranging a fundraiser, and so positive about it all.  But what about when I am also tired and lonely and sore and stuck.  Am I just meant to carry all of that on my own?  Or am I meant to feel bad about myself for not being strong enough?

My kids won’t let me talk about it.  They say I am being morbid, that I should stay positive.  I know they mean well.  But I wish I could talk through my worries and my plans with them. 

We don’t want to accept negative feelings or allow people space to talk about negative feelings because they’re so… well …. negative. We don’t want to give them any power. We want to correct them, diminish them, or preferably make them disappear altogether. Our intuition tells us to push those feelings away as fast and hard as possible.  We say things like: “You don’t really feel that”; “I know you are really strong”; “Let’s think of all the good things” ; “I know I way to fix that”. But this is one instance where our intuition is leading us astray.  We need to slow down, make space, and make it ok to say what is real.   Based on the work of Joanna Faber and Julie King

It is not about you.  So, don’t tell them what they should be doing or must be feeling.  Don’t tell them about the similar experience you have had. Don’t overwhelm them with how upset you are feeling.

I was stunned by how many people told me to be “brave” or “grateful” or that I “must feel lucky”.  When they said things like that, it felt like a way of shutting me down.  I didn’t feel any of those things that they told me I should be feeling.  I felt scared, and cross, and often numb.  But I didn’t think that most people would be ok if I said my real feelings out loud. They kept telling me what I was allowed to feel and what I was allowed to talk about. 

I am already caring all the time.  All of my caring is used up.  I don’t have the energy to hear about how upset you are. I don’t want to have to comfort you too and care for you too right now. 

It felt like everyone was telling me their experiences of grief.  It overwhelmed me.  Am I meant to be comforting you now?  I can’t deal with my grief and all of your grief too.

I don’t want to hear about how you think I should be juicing, or taking vitamin C, or how your aunty cured herself by fasting.  Don’t tell me what to do when I haven’t asked you for your advice.  I know you just want to help.  But it doesn’t feel like help.  It feels like you are telling me that this is a simple thing to fix.  It’s not.  It feels like you are telling me that you would be much better at handling this and that I am not doing things properly. 

“Empathy says: “I know what you are going through.” Compassion says: “I might not understand exactly what you are going through, but I am curious about your experience, understand it is tough, and I’m right here with you.” Alua Arthur

Offer support clearly, but gently.

Before you do too much, ask “What can I do for you?”

One of the best things was when people emailed or text to offer help or to say that they were thinking of us but also said “No need to reply to this”.  That was brilliant.  Often, I never replied.  It was so good not to have to feel like replying was another thing I had to do. Even when I never replied, I so appreciated getting the message.”

She arrived and spent two weeks rushing around, bossing everyone, and reorganising everything. I know she was trying to be helpful – but it was exhausting and made me want to scream.   I wanted her to stop, slow down, listen, feel. It was such a relief when she left.

I liked it when people said “I was wondering if it would be helpful if I did […this thing…] for you.  Would that be helpful?”  Then I could say “Yes” or “No”. That was the best. 

 “Don’t take over. Don’t try to be the hero. I though love meant action. I had no idea it could be so still.” Kelly Corrigan

Be there for the lang haul.

“The brave hang around.  They are available.  They bear witness.” Kelly Corrigan 

Lots of people make contact at the beginning or for the big crisis.  But I have been carrying this grief and fear and dealing with all of the caring and all of hospital appointments for years.  And there will be years more.  The real friends are those who have kept checking in, kept coming over. 

My one neighbour has been so good to us.  She pops in every few months.  Nothing big.  I know I don’t have to open the door to her if I don’t feel like it.  She will come back another time.  Just knowing that she is there and that she keeps coming back every now and then has been such a support.  Most of the time we just chat for a minute or two about simple things.  But a couple of times she has come in for tea and been with me.  That support over years is deeply valuable. 

Someone at work told us that their partner was diagnosed with cancer.  It was amazing to see everyone rally around and make a food roster and send gifts.  It was wonderful to see him getting that support.  But, being honest, I did think “what about me”?  I know that my husband getting early-on-set dementia is really boring in comparison to cancer.  But it is huge, it is exhausting, it is taking over my life. I am losing my husband day by day.  I don’t want meals or gifts.  But it would be nice if people could find a way to acknowledge that this long, slow crisis is also deeply painful.

I get the feeling that people don’t like it if you don’t recover or die within a year or so.  Maybe it takes too much to keep caring for too long. 

Laughter and distraction are important too.

I got the clear message that a ‘good’ patient was someone who was never too sad and never too happy.  I was meant to be calm and serene at all times, and only ever eat broccoli.  Well bugger that.  Sometimes I want to roar with laughter, or go to the movies, or eat too much ice-cream, or drink wine, or gossip, or watch trash TV, or say mean things, or talk about sex.  So talk to me about that sometimes.  Show up to do that with me sometimes.  Allow me to be me.

Thank goodness for those women.  The black humour and real honesty of that group was so important. We had moments of real fun together.

It is ok if you feel awkward and wrong.

Remember that showing up is not about you feeling good and you feeling like you have done a good job.  It is about trying your best to show up for me.  If you feel awkward or afraid or uncomfortable – that is ok.  Right now it is not about how good or bad you feel.  It is all about me.  Just keep trying in small and gentle ways to be there for me.

Please understand that I am not going to be easy to be with right now. I might seem rude, or cross, or short with you.  But it is not about you.  It’s about all of the sh** I am having to deal with.  Please don’t take it personally if I am not being kind and polite and looking after how you feel right now.