The Privilege Of Keeping Watch Over A Dying Parent (And Grandparent)

As my mother lay dying, my children sat with her, talked to her, reminisced with her, read to her, sang to her, played her favourite music, held her hand.There was no question that they would not be as involved with her death, as they had been with her life.

This is my story of honouring my mother’s final days.

Day One.

I am lying on my side in a high metal-railed bed, the bars pressing into my back. How many times have I lain in a similar bed in my local hospital, my arms draped protectively over a sick child, as I prepared to spend the night cramped in a single bed with a squirming young person?

Now, though, the person I drape my arm across is not one of my children, but my dying mother. And I will not spend the night in her bed. Her tiny body is motionless. She shudders occasionally, as she breathes in, out, slowly, peacefully. My head rests against her back, and my hand cradles the bony outcrop that is her shoulder. I am not in a hospital, but a nursing home.

I am in shock, and desperately want to be comforted. The trouble is, the person that I want to console me is incapable of holding me. She is the person I am hugging. My Mum.

Mum has suffered the indignity of debilitating dementia for seven years, the disease stripping her of all that she was. For the past three years, she has been bed-ridden, and spoon-fed mush. She has not spoken an intelligible word for over six months, and did not seem to recognise anyone for the past year. How I wished I could have asked her questions about her past, heard her answers about her hard, event-filled, yet no-regrets life.

Now, finally, she is slipping away. Slowly, who-knows-how-long, she will move from being my mother to having been my mother. Present to past tense. Just like that.

I spend that first night on a low fold out bed next to my mother’s functional white hospital bed. The flickering battery-powered tea light candles, thoughtfully set up around the room by the staff, suffuse the darkened room. I sleep on alert, as I had slept when my children were ill.

After a couple of hours, I wake. What was that noise? Getting up, I find it is my mother, breathing heavily, snoring like a train. She is alive. I settle down, and finding it hard to sleep, turn to the other side. Suddenly, my bottom is on the ground, and my head and feet are pointing to the ceiling in a ‘v’ shape. The middle of the bed has collapsed! I tell my mother what has happened, but I laugh alone. She, who was always amused by my calamities, would have relived this incident for years.

Day Two.

I crawl beside my Mum for a cuddle several times. At one stage I face her, tucked in to fit her curled body. I gaze up at her, and suddenly it is as though my body remembers being a babe-in-arms. Is this how I felt when I looked up at my protector, the object of my attachment, my architect and introducer into this world? Love, trust, trust, love. The tears track down my sobbing body.

Keeping watch with me now is my teenage daughter, who is supportive, empathic, and grieving. This journey is new to both of us, and I wonder how she will be affected.

Together, we read about signs of impending death, and we talk to the staff of the nursing home. We want, in some manner, to prepare ourselves.

More family arrive.

My young adult son, however, lives four hours away. He and his grandmother were very close. She was present at his birth, and he was like the son she never had. He has a life in the big city, and plans to come down in a couple of days.

My children have participated in supporting their grandmother through her dementia. They have fed her, painted her nails, talked to her, sung to her, accepted her and loved her, even when there has been no outward recognition by her.

Now, they will support her as she dies. And we will support each other, as a family.

Day Three.

My daughter is in the middle of her assessment period at school. I am in the middle of teaching a parent education course. Should we go home? My mother could continue steadily for days, even weeks. Or she could die tomorrow.

My husband, who had sat with his dying father, puts our uncertainty into perspective.

‘You will only ever have this time to be with your mother, your grandmother, as she dies. You will have hundreds of days of school, or of teaching others. This is your one opportunity to be with Gran, to say goodbye. This will never happen again’.

We stayed.

Now it is evening, just three generations together – grandmother, daughter, and granddaughter. Suddenly my daughter says ‘Gran’s eyes are open’!

I turn, and gaze deeply into my mother’s eyes. Pale blue, opaque, a pinpoint of black in their depths. Not focused. But I notice the slight movement of her head, the muscles in her face, around her eyes. The intimate knowledge we have of each other over half an intimate century is my translator.

I feel her confusion, her puzzlement. Her despair.

‘Why am I here?’ her eyes seem to say. ‘Why am I still here? What is happening?’

I listen to her, trying to interpret what I see.

‘You look puzzled, Mum. You seem annoyed, confused.’

She looks back at me. Tears well into my voice. For one last time, we are together. My Mum and me.

‘You can go, Mum. You don’t have to stay. You’ve wanted to go for the past seven years – you didn’t want to be here. You’ve loved me, Mum. You’ve been the best mother you could be. I love you, and I have loved you. I am grateful for everything. But you can go, Mum. Don’t stay for us.’

My daughter’s arm snakes around my neck, and her sobbing head shelters on my shoulder.

‘Yes, Mum. That’s what I thought she was feeling. I think you had the right word – she was puzzled. She wondered why she was still here’.

I am so grateful for that moment of connection, of clarity, of understanding. Daughter to mother, then daughter to mother.

Day Four.

My mother’s breathing has changed. I phone my son, turn on the screen so he can see that his grandmother has changed from yesterday. I hope to instil a sense of urgency.

‘I’ll be there at 4pm’ he says.

I lean over to my mother and whisper in her ear. ‘Your grandson is coming. He’ll be here this afternoon. Please wait for him. Please.’

The day crawls by. I know that hearing is the last sense to be lost, and I continue to remind my Mum that her beloved grandson is on his way. I wonder why I persist, as she has not responded to conversation for months.

Now it is 4pm. No sign of my son. My mother’s breathing changes again.

5pm. I am beginning to worry. Has he had an accident? He might miss out on saying goodbye.

At 5.15pm my sensitive young man strolls into the room. He looks shocked at the reality – so different to what he had seen through his screen.

We all leave him to have some time with his grandmother.

At 5.30pm, alone with her grandson, her wizened hand cradled in his gentle palm, my mother takes her final breath.

As she was there to help his entrance to the world, so he was there to help her depart.

Mum’s family gathers around. We each spend time with her, to say our thankyous, our farewells. I scatter rose petals around her pillow, and link a petal necklace across her chest.

When I bend to give her a final kiss, I am bathed in the smell of her rose garden.

Now I am a motherless daughter, for which there is no word. I am the daughter of a memory.

My mother was not perfect, but was generous to a fault. Her final gift to her family was to allow us to travel with her, to each say our farewells, and to be there as finally, she found peace.

First published October 16, 2017

Resources:

Further reading: a series on death and palliative care in The Conversation

Grief and Loss. Lifeline

Grief doesn't have five stages. The Outline.

How to help a grieving friend.The animated version. Refuge in Grief

An Article on Complicated Grief. The Atlantic.

Australian Centre for Grief and Bereavement. Home page.

'Remember you will die' and eleven other tips for a better death