We need to talk about dying

The difference between the hospital and the care home’s attention to end of life care planning was stark. 

Mum was admitted to hospital during the second lockdown and so all conversation about care planning was challenging, but that is no excuse for the way hospital staff raised the issue. My sister, who had power of attorney, received a phone call around 10.30pm on a Saturday night from a doctor on duty. “I’m just looking at your mother’s paperwork,” he said, “and the Do Not Resuscitate form hasn’t been filled in - can you consent to that now?” She said a very firm no, of course - the conversation was held another day, as an actual conversation. 

They were somewhat better in the hospital at managing end of life care than talking about it.  There was a day when mum had a raging infection that wouldn’t respond to antibiotics, and she was fading fast. She was in the cottage hospital, and while they could have transferred her to the general hospital for more intensive treatment they didn’t think she’d survive the ambulance journey, so they planned now simply to keep her as comfortable as possible for her for her final hours.  We agreed with this, and the hospital called those of us close enough to come that evening to say our goodbyes - as I drove, all I could think of was that this was no way to die, in a hospital ward during lockdown, and I prayed hopelessly for a better ending than this. 

The nurses on duty quietly worked around us as we sat with mum, counting each rattling breath, playing the music of Phil Cunninghan and Aly Bain, as much for ourselves as for mum.  Until the shift change happened. When my sister arrived after a three hour journey, to say her last goodbye, as we thought, to our mum, the nurse who greeted her declared “well, she’s not actually going to die tonight so you can’t come in.”  My sister had come, as called by hospital staff, and was now turned away at the door, after a shift change.

Mum did make it through the night, thankfully, and she made it to her better ending, with many happy days with family and friends still to come.  She moved from hospital into a care home, where the end of life form was one of the first tasks after admission.  It was still lockdown, and as one of mum's only two designated visitors, it fell to me to complete the form with her. The form was full of medical questions, but it also covered pastoral care - what music does she like, is there anyone you would want to visit at this time?

The form allowed mum and me to have a full conversation around the end of her life.  The music choice was easy - Phil and Aly of course, or a bit of Beethoven.  And we talked about how to make the decisions around end of life treatment.  Mum could remember nothing of the time she had nearly died, so I told her of the conversations we’d had with the staff, how they thought she was too weak to make it through, how we agreed that they would stop any treatment and simply keep her as comfortable as possible.  Mum looked straight at me and said, “when the time comes, you have to let me go.”

It was months before the time came, but when it did, the care staff walked the journey with mum and us.  In the summer, as mum’s energy took a significant dip, I asked a nurse if we were coming towards the end.  “Not yet,” she said, “but maybe with the turning of the seasons that's where we're going.”  Come December, I asked another nurse the same question.  “Yes, I think that is where we are,” she replied, and gave me a hug.  The nurses cared for mum with dignity and gentleness, and they spoke plainly and openly with us through those last few weeks of palliative care.  It was nasty and brutish, but mercifully short, and when the time came, we did as mum had told us, we let her go.

I don’t know what I think about assisted dying, and whether or how we should change the law.  I do know that whatever is decided around that, we need to pay as much and more attention to how we manage palliative care.

It's been seven weeks...

Mum with me and my sister Angela 

There is a scene in the first Lord of the Rings film, Fellowship of the Ring – the fellowship have passed through Moria but Gandalf has fallen into the depths and is lost.  His friends are now in the forest of Lothlorien, mourning the loss of their beloved leader.  The elves of Lothlorien are singing a lament for Gandalf, and Merry asks Legolas “what do they say about him?” Legolas answers “I have not the heart to tell you.  For me the grief is still too near.”

Mum died seven weeks ago, and when people in their kindness ask how I am, I don’t really know what say – for me the grief is still too near.  I feel like I’m under a blanket of snow, not frozen, but insulated.  Occasionally a gust of wind blows the snow away and the pain is raw, and then it settles again.  In time it will melt and I will find what is below.  But for now I am blessed to have the words of others which hold me in this time and place.

The first words I am held by are mum’s words.  A few months before she died, we were talking, and she told me “I think I’m getting ready to say goodbye.”  Mum’s stroke had robbed her of her independence, and though she made the best of every day and brought life to those around her, she was tired, and was ready to go.

It was hard to walk those last months, as mum’s energy left her and she sank deeper into herself each time I saw her.  The words that held me then came from Richard Holloway.  In his book, Waiting for the Last Bus, he talks very honestly and simply about what it is to live at the end of life.  I had stood at many a bus stop with mum over the years, and these words helped me as I sat with her now, waiting till she caught that last bus.

Mum died on twelfth night.  Her cousin Donall told us that this was Nollaig na mBan, the day when by tradition in Ireland the women took their rest after all the hard work of Christmas.  Another word to hold me - a fitting day for mum to take her leave from the world, for her final rest.

In the day s following, I lost myself in the words of Jane Austen.  Mum and I shared a love of Austen, and so as I re-read Sense and Sensibility (and re-watched the TV adaptaion, and read Joanna Trollope's modern adaptation) I was able to find relief from my grief, while staying connected with mum.

At this time, friends and relatives offered many words, hugs, cards, flowers, most of which are now list in my memory and yet each played their part in holding me in that strangest of times.  I also found a blessing in music.  Whether in church listening to the choir, or at Celtic Connections listening to Mary Chapin Carpenter, music gave me much needed space for feelisngs to come, to simle and to cry, without having to think too much about it.

The last word goes again to mum.  Years ago, we were talking about my dad, who died when I was 19, and mum was the age I am onw.  Mum and I talked aobut how the grief changes over the years, and as life goes on it is less about the sharp pain o loss, and more about the ongoing sadness that the person we love is not around to share in the sorrows and joys of life.

My grief will never leave me, but I have the rest of my life to find the words for it, and in the mean time I will lean on the words of others.