The six months of anticipatory grief

The diagnosis came back stage four on a Thursday and the oncologist said "we are talking months, not years" with the careful pacing of someone who has said it a thousand times. I was in the room with Mum and Dad. Mum wrote it down in the little notebook she takes to every appointment, in her tidy primary-school-teacher handwriting, and underlined the word "months". Dad nodded twice. I sat there and felt something go cold in the middle of me that did not warm up again for about a year.

Driving home along Anzac Highway I started crying at a roundabout, which surprised me, because nothing had actually happened yet. Dad was alive. He was, in fact, eating an apple in the passenger seat. He was going to be alive for months. And I was crying as if he were already gone.

That is the thing nobody warns you about. The grief does not wait politely for the death. It walks into the house with the diagnosis and it sets up its kit on the kitchen bench and it starts working.

What anticipatory grief actually is

Beyond Blue and Palliative Care Australia both have a phrase for it: anticipatory grief. The grief that runs ahead of the loss. The mind, the heart, and the body all begin the work of mourning while the person is still here, still answering the phone, still asking how the kids are.

It is not "premature". It is not a sign you have given up. The clinical literature is fairly settled on this point, near as I can read it. Anticipatory grief is a normal, near-universal response to a terminal diagnosis with a runway. The body knows what is coming. The body cannot really do "later". So it starts now.

What it looks like in practice, in a forty-five-year-old Australian bloke with a dying father:

• Sudden weeping in inappropriate places. Bunnings car park. The petrol station. The school pick-up line. Often without a clear trigger.
• Sleep that is intact in length but not in quality. You wake at 4am with the cold middle.
• An odd flatness around things you used to enjoy. The footy means less. Music sounds further away.
• Foreshortened attention. Three-paragraph emails take half an hour. You read a sentence twice and still do not have it.
• A new and slightly strange tenderness with strangers. The bloke at the servo. The woman at the chemist. You say thank you with weight in it.

Knowing it has a name does not make it stop. It does change the way you talk to yourself about it. You stop saying "I'm being ridiculous, he's still here". You start saying "this is the body doing the work it has to do".

The guilt of grieving someone who is still here

The guilt is the part that ambushed me. I did not expect it. The first time I noticed it I had been crying in the shower (good place; nobody hears, the noise of the water gives you a kind of permission) and I came out and Dad was at the kitchen table eating Weet-Bix and reading the cricket scores and I felt like a fraud. He was right there. He was reading the cricket scores. Who was I to be grieving him?

The guilt has a few flavours, and naming them helps.

• The fraud flavour. "I am crying for someone who is still alive. That is melodramatic. That is selfish."
• The wishing-it-was-over flavour. The dark one. After about month four, when the visits to the hospital are weekly and your dad is in pain and not recognisably himself, a thought lands one day that you cannot quite say out loud, that you wish it would just be over so the actual grief could begin instead of this long held breath. This thought is normal. It is not a betrayal. It is exhaustion wearing a moral mask.
• The not-grieving-enough flavour. The mirror image. You went to a barbecue on Saturday and laughed at a mate's joke and felt fine for two hours and then drove home and felt monstrous for having had two hours off.

The bloke I spoke to about this (not a counsellor, a mate of mine who lost his old man three years before mine) said the cleanest thing anyone said in that whole period. "Mate, you cannot do grief wrong. There is no scoreboard. The body just does what it does and you walk along beside it."

The body metaphor I keep coming back to is the way the tide pulls back before a big wave. The water leaves the beach. The beach looks dry and odd, full of stones it has been hiding. That dry beach is what anticipatory grief feels like. The wave has not arrived. But the water has gone, and you are standing on the strange exposed floor of yourself, looking at things you have not seen in a long time.

The conversations to have now

Here is the cold practical bit. There is a window between diagnosis and the last weeks where the dying person is still themselves: still articulate, still mostly continent, still able to drink a cup of tea and tell you a story they have told before. That window closes. You do not get to know exactly when. You should treat every Tuesday afternoon as if it might be the last clear Tuesday afternoon, because at some point one of them will be, and you will not know it until later.

The conversations I had with my old man, in approximate order of how glad I am that I had them:

• The story of how he met Mum, in his own words, with his own emphases. I had heard fragments my whole life. I had never heard him tell the whole thing, start to finish, with nobody else in the room. I asked one Sunday afternoon. He told me for forty minutes. I recorded it on my phone, which I felt slightly weird about, but I would feel a lot weirder now if I had not.
• The questions about my own childhood I had never asked because I assumed I knew the answers. Why we moved to that house. What he was doing the year I was born, professionally. Whether he had ever wanted to be anything else. The answers reframed about a decade of my own memory.
• The stuff he was afraid of, which he would never have said unprompted. I asked one night, sitting on the back deck with two beers, and he said "I'm not afraid of being dead. I'm afraid of being scared at the end. I do not want to be scared." I have thought about that sentence approximately every week since.
• The forgiveness conversation, both directions. There was a thing from when I was nineteen. There was a thing from when he was forty-five. We did not weep. We did not call it a forgiveness conversation. We just both said the thing we needed to say and then he asked if I wanted another beer.

The conversations I did not have, that I wish I had:

• The financial-mechanical one. Where the will is. What the password is. Whether he had a preference for burial or cremation. I had to find out the answers to these from Mum in the days after, which was fine, but he should have been the one to tell me, and I should have been the one to ask.
• The ordinary one. I wish I had asked him more about his ordinary days. What his mornings looked like at sixty-eight. What he liked about Tuesdays. The small grain of his life. We tend to ask dying people the big questions and we forget that most of a life is small.

If you are reading this with a parent newly diagnosed, do not turn it into a project. Do not arrive on Sunday with a list. Just sit with them more often than you would normally and let the conversations breathe their own length. The list will get itself answered if you are in the room enough.

Presence beats productivity

The single most useful sentence anyone said to me in those six months was from the palliative care nurse at the Adelaide hospice on a day when I had brought a printout of his medication schedule and a folder of articles I had read and a list of questions and she looked at all of it kindly and said "you do not have to fix it. You just have to be in it."

Presence beats productivity. I will say it again because the men who read this site will need to hear it twice: presence beats productivity.

In a culture where blokes my age have spent twenty years being praised for solving things, the dying parent is the first problem you cannot solve. The instinct is to get useful. Make the spreadsheet. Coordinate the visits. Research the drug. These things are not bad. They are also the highest-grade cope you have ever known, because they are a way of being near the dying without being WITH the dying.

The thing the dying person needs, mostly, is for the room to be inhabited. They need you to sit in the chair. They need you to bring tea, even if they do not drink it. They need you to read your book quietly while they sleep. They need to wake at 3am and see your face in the chair lamp. That is it. That is the whole job.

Some practical things that help with sitting still in a hospice chair, because it is genuinely hard:

• Bring a book you can read in fragments. Short stories. Poetry. Not a thriller; you will not track the plot.
• Do not bring your laptop the first three days. You will use it. You will hide in it. Leave it in the car.
• Drink water. The hospice is dry. You will get a headache by 4pm and not know why.
• Walk the corridor every two hours for five minutes. The nurses will not mind. You need the body movement.
• Let other people sit with you. Mum and you. Mum and your sister. Your wife. The grandkids for a quick visit. The room can hold more than one mourner.

I sat with him for a lot of hours in the last six weeks. Most of those hours nothing happened. He slept. I read. The light moved across the floor and got dimmer and somebody brought us each a cup of tea and took them away again undrunk. I would not give those hours back for anything I have ever owned.

The tide goes out. Then the tide comes in. Both are the same water.