Last week was the fifth anniversary of my mum’s death. And to mark it I submitted my manuscript, Sitting By my Mother’s Bedside, to a publisher. (I also cried a bit, bought some flowers and lit a candle and ate some chocolate. But this post is about my manuscript, not the other stuff.) I was so nervous about sending it off, I had drafted my email and sent it to myself a few times to read through it and to check it didn’t sound embarrassing, or have typos. I read and reread my work, made sure all the chapters started on their own page, checked that it looked good and read well. I did my best and I am pleased with it. But before I even pressed send on the email I had already drafted the rejection letter in my mind.
Dear Jo, I am sorry but we are unable to consider your manuscript for publication. Short sweet and simple. That is what I expect it to say. And even though this is what I might expect, I do still hope (really hope) it might read differently. But either way I feel like I have achieved something. I’m just not really sure what that is. I also feel conflicted, after all the only reason I have a manuscript to submit is because of my Mum’s stroke and subsequent death. I definitely don’t feel like I have anything to celebrate, but I do feel proud of what I’ve written. And I am confident that what I’ve written would be helpful for other people in similar situations. I guess this is really why I want to publish it. I wish I had read or knew more about death and dying before going through it with mum. I wish I had this to read when it was happening to me.
It is funny because whilst I’m relieved to feel like I have done all I can do with my manuscript, I find myself missing it. When I was working on the edits and fourth and fifth drafts over the last couple of months I was sick of it, bored by it, I wanted to be done. Now that I am done though I miss it. I feel like I have lost something of a companion. I timed my submission to coincide with the anniversary of mum’s death, but in doing so I feel like I just gave myself an additional thing to miss. Alongside the grief I feel for my Mum, I now also miss my manuscript, my writing that tied me so closely to her.
So I decided to share an excerpt from my manuscript here, on my blog. I spent a bit of time thinking about what part to share and in the end decided to share my mum’s death. I chose this part because it is up there with the best memories I have of my mum. It might seem like an odd thing to say, but it is true. I have many, many wonderful memories of mum, but for its beauty, intensity and sense of all encompassing love this is an experience I feel honoured to have had. What strikes me in looking back at this experience is that even though my mum was dying, even though she was barely conscious, she was not passive in this event. My mum was still present and engaged, but engaged in dying. She was still herself, she was still filled with love but her attention was inward. As she was dying we, her family, had the space to be with her, to share ourselves fully and openly. I think that is what made this such a powerful, and lovely experience. We were all together. And I feel fortunate to have had this experience.
A bit of background to help set the scene: My mum was 63 when she had a stroke and in the early days it looked like she was going to recover well. But then she had a series of cerebral vasospasms which caused irreparable damage to her brain. She slipped into a minimally responsive state. As it became clear that Mum was dying we arranged for her to be admitted to a hospice on the Gold Coast for palliative care. Let me just say briefly though that none of this happened without us directing every aspect of it. The hospital did not offer support or suggestions to plan for mum’s death. We had to become informed and advocate for her, to ensure Mum experienced death in the way that she would have wanted it. The following passages are from the manuscript I wrote about these experiences.
It was clear that Mum would die this night, her body was becoming cold, first it was just her hands, then her arms. I felt sorry I had forgotten to bring socks for her. Her feet were like ice. I wondered, did she feel the coldness creeping through her body as her life slowly left her. As I walked into the room I could hear her breathing. The secretions in the back of her throat that she couldn’t clear. I spent my time beside her, tending to her, wiping the saliva from her mouth.
I can remember something I read, by a woman writing about the death of her father. She talked about a lack of dignity. She seemed to find it an embarrassment to be wiping her father’s mouth, an embarrassment for him at least. As if there was something shameful and uncomfortable about needing such care and attention. I felt no discomfort or shame in tending to my mum, I felt privileged not embarrassed. My mum was dignified in her dying because we didn’t take this from her, because we met her where she was.
At some time around 11pm I think, I went to lay down in the lounge room leaving my mum in her bed, my dad in the recliner and my younger sister in there as well. My older sister and aunt were asleep on the lounge chairs. I couldn’t sleep but lay for a while, listening to the sounds, alert to movement in the hall. The nurses lay on the chairs right outside her room also stirring, alert yet restful and calm. Their presence and relaxed state comforting, it was a state of grace and acceptance; no need for heroism, no need to try and keep death from this door, here it was welcomed, greeted with calmness and acceptance.
I heard my sister walk down the carpeted hall, and I got up to see how things were. In my mum’s room Dad lay dozing and my mum lay as she had been for the last couple of hours but her breathing had changed, Dad opened his eyes, not long now he said and I knew he was right.
My mum lay facing towards the little hand basin in the corner of the room, her back to the chairs and window, her back to my dad. I wanted her to face the other way, this wasn’t so much about her comfort I realise but about ours, her loved ones. I wanted her to be able to face us and for us to be able to see her. So I moved her, with my younger sister’s help.
As I rolled Mum onto her back her eyes flew open. It was awful and terrible all at once, and at that moment I felt like I had killed her. Her breathing became worse, I don’t know how I can describe it, the horror and panic, her horror and panic. My sister and I worked to settle her on her other side, slowly she calmed, her breathing settled and she relaxed again. I was badly shaken though, to the very core of my soul. Terrified, I thought, I’ve killed Mum. Of course I knew on one level that I hadn’t. Mum was going to die, but it was a moment of realisation, an overwhelming instant, one which I had to respond to with all possible compassion for myself. Only I could reassure me, and that is what I did. I stepped out of the room to gather myself and to wake up my sister and aunt. I let the nurses know that she didn’t have long. I took deep breaths collecting myself for this time, for these last moments with Mum.
I entered back into the room and Dad sat up now in the recliner, my older sister was saying goodbye, then she sat on the other chair in the room. My aunt went to Mum next. She spoke softly to her before sitting on the ground next to my sister, on the floor between my dad and Sarndra sat Pam. I went and knelt beside Mum and held her hand, as she took her last breaths. I prayed, not to a god or to a deity, but I prayed anyway and focused on giving Mum all the good will I had, all of the love that I felt. It may have been ten minutes it may have been twenty, slowly her breathing became sparser.
Mum’s final breaths held an eternity between them, I kept waiting to see if another would come, hoping for more. And then they stopped, she was gone. She was gone but I still held her hand. Again we each said goodbye and we got the nurses, they came in and confirmed that she was dead. My mum was dead.
We stepped out of the room for a minute and then my sisters and I re-entered to wash Mum and dress her one last time. My dad hovered around while we did this stepping in and out. Together my sisters and I washed Mum’s face, her hands and arms and her chest, legs and feet, we rolled her onto her side to wash her back and dressed her in her night-gown, we brushed her hair, the nurses fixed a sheet over her and folded her hand on her chest, a folded towel was used to hold her head still, she was dead.
Time moved slowly, Dad wanted to leave so he said his farewells as did I. And then I cried and I cried. I sat in the ute with Dad as he drove us back to his and Mum’s house. My sisters and aunt waited with Mum for the funeral director to arrive. At home I lit a candle for Mum, it was a twelve hour candle but it burnt for over 2 days, it felt strange and surreal yet also so awfully real, I felt as if I may never know such presence again.
My mum’s death was beautiful, calm and loving, and so close, so real, so apparent and so unavoidable. Mum died at 12.35 in the very early morning on the 19th of October 2012.