Your last day

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I arrive early in your room in palliative care on the morning of your last day. I walk in quietly and you're listening on your laptop to the Tenebrae Choir singing Allegri's 'Miserere'. You are sitting with your head back in a large arm chair. Your eyes are closed. You have a mask covering your nose and mouth and you are breathing with the aid of a ventilator.

Empty hospital bed lit by sunlight (Roberto Pangiarella / EyeEm)I sit near you and you open your eyes and move your hand to turn off the music, but I say, 'No, leave it on, it's lovely.' And you do, and we share ten precious minutes listening together. Some of your family members arrive and I leave to give them time alone with you.

For many years I have benefited from your wisdom and clarity of thought. I particularly admire your ability to meet people where they are at. Some of your family and friends were puzzled by your acceptance of people whom they found difficult to accept. In many ways you are an enigma. But you are not naïve. You are both a realist and a person of compassion.

Nearly a year before, you were diagnosed with motor neurone disease. You had been tiring easily and becoming breathless. You were a bush walker, bike rider, and a fit person — why were you breathless after an uphill walk in the countryside?

By Christmas 2015 your speech was slurred. You had a landmark appointment with a specialist in early July 2016. You insisted on going alone. You rode your bike to and from that appointment at which you were told that you had MND.

In March 2017 we went for a holiday with friends by the sea. I have a precious memory of sitting with you and watching the waves breaking.

By mid-2017 you lost your ability to speak. When I visited and asked what I could do for you, you would point to a chair and I would sit and wait while you reached for a small white board and marker pen and wrote questions for me to answer about what I had been doing and how my family members were.

 

"We sit with you, hold your hands, kiss your forehead, pray and sing. When we sing 'Dream a little dream', you 'dance' with your hands."

 

Other friends visited you, some on a daily basis. You had friends from different times in your life and I met many of them for the first time after you became ill. One day I said to you, 'I think the only thing many of us have in common is our love for you.' You smiled and wrote, 'I know.'

You particularly enjoyed visits from members of the younger generation. You shone when they told you of their activities, their studies, their hopes. They related to you and warmed to your interest in everything they were doing.

Because you were unable to go to concerts, my daughter and grandchildren visited you to play and sing a variety of songs from classical to popular genres. You beamed and applauded when they sang.

11 October 2017 is a day etched in my memory. You needed your ventilator almost constantly. You had no energy at all. A week later a place in respite care at a nearby facility became available and you moved there.

Three months later on the morning of your last day there are eight people, family members and friends, in your room with you, including me and my daughter, who has sung for you many times. She is a music therapist and has had experience playing music for people as they die as part of her clinical practice.

She arrives carrying her guitar, smiling and waving to you, and you wave back. After discussions during the week, first with you and then with your neurologist, it was decided that she will sing for you and the people with you today.

We sit with you, hold your hands, kiss your forehead, pray and sing. When we sing 'Dream a little dream', you 'dance' with your hands.

In the early afternoon your neurologist and your GP at respite care, who will assist him, arrive. Your neurologist tells you to lie on your bed while he checks your heart beat and administers a mild sedative to relax you. Then he softly recites to you a poem written by Goethe in 1780 — 'Wanderer's Night song'.

My daughter continues playing and singing softly to you as you gradually fall asleep. When you are in a deep sleep your neurologist removes your mask and turns off the ventilator. After several minutes he listens for your heart beat, but your heart has stopped.

Post Script:

In the week before your last day one of your friends asked you what you wanted him to say for your eulogy. You wrote on your white board, 'I want people at the funeral to know God loves them. That's all.' For the concluding song at your funeral my daughter and grandchildren sang, 'You Raise Me Up', and I wept and applauded you for all that you are.

 

 

Maureen O'Brien headshotMaureen O'Brien is a Melbourne writer.

Main image: Roberto Pangiarella / EyeEm

Topic tags: Maureen O'Brien

 

 

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Existing comments

Maureen, this is beautifully poignant. Thank you. It is tenderly written and deeply moving.
Patricia Murray | 20 March 2019


Thank you Maureen
Patricia Taylor | 21 March 2019


A very touching story Maureen, thank you .We can make a difference even in our dying. In this week of tears and heartbreak this is food for the soul. I love your daughter singing for someone dying. Beautiful.
Colleen Keating | 21 March 2019


This is the ending of a story by James Bradley titled "The Turtle's Graveyard". It's the story of a person drowning at sea. "On the horizon I think I see a light, the fading dark before the dawn. Maybe a boat will come, maybe not, but either way it will be too late. Am I sky? Or am I water? I no longer know. Maybe this is how the turtles feel it, the coming of their time. Maybe they too feel it like a waking, like breathing. Like flight."
Pam | 21 March 2019


Thank you for sharing. Music holds memories for us and I cried when I read your article as it reminded me how I played my sisters favourite songs for her when she was dying.
Cynthia Rowan | 21 March 2019


Thanks for that, Maureen. I hope I'll have music at the end. During my wife Jan's final week, a woman from the chaplaincy section at the hospital played a harp for her. She came to play again a couple of days later when I reported that Jan had found this so helpful. This woman also lent her a CD of harp music (Peter Roberts, Sanctuary) which we played several times on Jan's last day, alternating with periods of silence, me singing lullaby-type songs, and gently massaging her feet. I believe this all helped ease Jan's passing.
Chris Watson | 21 March 2019


Thank you to all who have responded so beautifully to my article. I have found your comments and sharing very moving. Maureen.
Maureen O'Brien | 21 March 2019


Thank you, Maureen, for such an inspiring story of a beautiful life and death
Patricia Cebis | 21 March 2019


I was very moved by this lovely passage of the rites of death and this brave fellow. I would want a similar ritual should this happen to me. It is a very healing piece for me to read.
helen donnellan | 22 March 2019


wow you are an awsome lady this is truly powerful
maryellen flynn | 22 March 2019


Maureen, Your story is deeply moving. I hope and trust I am granted a similar departure. You are truly wonderful. God bless you and your Ministry.
Gavin O'Brien | 24 March 2019


Beautiful writing - poetic prose. Fascinating that all correspondents but one are women. I wonder if gender difference does exist after all!
john frawley | 24 March 2019


The way to go? Definitely. No sad farewells? Well, for those who've lived a good life, it's supposed to be far better on the other side. The end to earthly pain? Yes. Looking forward with joy to seeing the full picture which we only glimpse here? Sure thing. Deaths differ, but for the good, it's always the same. Joy. A smooth passage. No need to have the fee to pay Charon. It was centuries ago that the light of Christianity broke the fear our ancestors had of the dark night to come. There is no dark night for those who believe and do righteous deeds in their lives. My father's death was somewhat different but had the same essence, the same hope. Thank you Maureen. The Irish bards of yore would have praised your work.
Edward Fido | 26 March 2019


A beautiful and inspiring expression of dying with dignity, Maureen. Thank you.
John RD | 08 April 2019


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