“…so I thought:
maybe death isn’t darkness, after all,
but so much light wrapping itself around us —
as soft as feathers —
that we are instantly weary of looking, and looking,
and shut our eyes, not without amazement,
and let ourselves be carried,
as through the translucence of mica,
to the river that is without the least dapple or shadow,
that is nothing but light — scalding, aortal light —
in which we are washed and washed
out of our bones.”
Mary Oliver, White Owl Flies Into and Out of the Field
Facebook. Instagram. Like many of you, I suspect, I have a love/hate relationship with these social media apps. But as someone who is fairly sociable and values connection, like it or not, I can’t quite step away…There is nowhere else I connect with quite as many of my favourite people, in one place at one time. So here I am, endeavouring while in these spaces, to post not just a bunch of pretty photos once every couple of months, but images that reflect the fullness of my life, of being human. And in that vein, today, a photograph of Mum with a happy little Tink, another taken just a few weeks ago and a simple image of a willow coffin.
My father who was both a vascular and general surgeon (the latter meaning he was almost daily at the coalface of life and death in A&E) rarely spoke about his practice as a doctor, but I do remember him saying once that he felt that the great failing of western medicine was its non acceptance of death.
Mum has had dementia for at least thirteen years. She has been in residential care for six of those – five in the dementia wing, the last year in the hospital wing. For much of that time, she’s experienced 2-3 seizures spread fairly evenly over the year, in the last month she has had five. Her doctor called me on Friday to say he’d increased her anti-seizure meds and if that is ineffective over the next couple of weeks, he could switch her to a different medication. Medication which while possibly more effective comes with a range of unpleasant side effects including nausea. Mum had another seizure on Sunday morning.
Diana, my mother, is undeniably winding down. She spends most of her time asleep, she has to be bathed, toileted, dressed and fed. Feeding her involves putting a small mouthful of food up to her lips and like a baby bird she opens her mouth, ingests it and chews. She still swallows food but increasingly seems unsure of what to do with a mouthful of water. She cannot stand or walk. She is partially aware of people, and while I think there are moments in which she recognises those people she loves and has known for decades, mostly these days she seems to be not there at all.
The last thing I want is for Mum to experience a range of very unpleasant side effects in order to potentially stop some seizures, when her mind-body is trying to shut down. She appears to have barely any quality of life. The reality is that she is dying.
My wish now is to advocate for this transition to be as comfortable as possible. So to that end I had a conversation with her doctor yesterday, with an intention essentially to determine the choices ‘we’ can make in order to let her go. And how to keep her comfortable while that unfolds. I was expecting to be challenged, but her young doctor was wonderfully empathic and holistic in his approach. He suggested we keep her on the current dose of the anti-seizure medication, pull her off all other meds, including her supplemental food (which was prescribed to try and keep her weight up), provide water orally but not by IV and if she develops an infection (quite possible, apparently, with the seizures) she won’t be treated with antibiotics. I was enormously grateful to have with me my-other-Mum (mother of my ‘oldest’ friend and former next door neighbour) who is a retired registered nurse with considerable experience in aged care.
The doctor gently said to me that it’s often helpful to let someone, in this situation, know they can go. I’ve been doing that each time I visit her, over these past several months. Telling her gently that I love her. Telling her I forgive her for everything – this being an only child of a mother addicted to alcohol and tranquillisers and then suffering from alcohol induced dementia has been quite the wild ride.
We’ve no idea how long it will take for Mum to go. It could be days, mostly likely weeks, possibly some months. So in the meantime, I’ll spend as much time as I can sitting with her and – spiritually, if not entirely practically – midwifing her death. I’m also now turning my attention, with a full if somewhat weighty heart, to what kind of ritual we’ll organise to farewell her and celebrate her life. On that note, by way of a somewhat abrupt conclusion to this wandering, I have some questions…
Can anyone recommend a celebrant in Welington/Hutt Valley?
I’m interested in alternatives to conventional heavy wooden coffin – any thoughts?
For those of you who’ve been through this with parents or other family, is there anything you wish you’d known at the time? Or would have done differently? Equally, any thoughts on really lovely pieces of ritual you’ve been a part of? And I’m thinking about the whole process – from now through to a gathering after the funeral service.
Let me know if you have any thoughts – firstname.lastname@example.org
8 thoughts on “Wrapping her in light.”
Emma, thank you. It means a lot that you took the time, and thought, to comment. Sending much love and support to you and your family. I hope your <um is doing well. Xxx
Oh, Grace. I have such love and respect for the way your cherished and honoured your Mum and Dad in these moments. And I’ve no doubt that these small acts of yours cast big and beautiful ripples for them in their wake. I hope to see you next week for a big hug, in person.
Karen, thank you. I’m such a huge fan of Mary Oliver, I came across that poem looking for something that captures how I feel about these last few months of Mum’s life and Mary’s words resonated deeply. I’m glad they’re provocative for you too. Sending you lots of love and I hope this finds you well and happy amidst the craziness of our world presently.
Thank you, Amanda. I’m so sorry there was such loneliness for you, afterwards. I am grateful for your words, so that maybe I can be – at least a little – prepared for that. Sending lots of love to you.
For me the hardest part was after. After the preparing, the busyness, after the funeral, after the rituals …
Finally you are at home… alone… bleak and empty.
That’s the time to be prepared for.
You’re such a compassionate and wonderful daughter through this prolonged journey with your mother. It is very profound.
Thanks for sharing your thoughts on this. I haven’t been through this with my parents yet but there have been a few times when we were faced with the possibility and am so thankful for the extra time. I know I will be there too one day in one way or another. My perspective is always changing mostly based on what I’m learning from friends that have experienced this before me. Wrapping in light is a new way of thinking about it for me and I’m grateful that you shared this. Take care.
Hello darling, this is beautiful. I don’t know what to say. It’s such an intimate and private time.
As you know I couldn’t have a funeral or do for my mum and dad what I wanted, to show them how much they were loved after they died.
I wanted family to support one another, the ritual of placing something meaningful to create a shared memory of them, stories….
Death bought to the surface the deep disconnect, and the decision was made that “they didn’t want a fuss”. So no gathering or funeral. I didn’t expect that.
But I know that the small act I did do, which was cover Mum’s beautiful body with flowers from my garden, and choose a blue wicker coffin, would have made her happy.
For Dad I was alone in the chapel with his plain pine box, no one else from my family there, so I sang him a song that always made me think of him, an Eva Cassidy one, Autumn Leaves, before the curtain closed around him and he went into the crematorium.
I believe that an act from a heart full of love is the gift they receive, however that looks. Love doesn’t judge.
Whatever you decide dear heart will be perfect…if it makes you happy, it will be what she wants too.
My thoughts are with you through this tender time.
Tink-what a beautiful brave soul you are. My thoughts are with you and your mother and may she pass on peacefully knowing how loved and cared for she has been. All my love and support to you and your husband at such a tough time in life-letting go of one so loved. Xx
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