Wrapping Mum in light.

“…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 loves connection, like it or not, I can’t quite step away…There is no where 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 and words that reflect the fullness of my life. And in that vein, today, a photograph of Mum with a very little happy Tink, a photo taken 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 the 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 in controlling the seizures, 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 now. The reality is that she is dying. 

My maternal grandmother died from Alzheimer’s. It was long, very drawn out and Mum was explicit. Please don’t let me end up like that, she said.

My wish is that my mother makes this transition as comfortably as possible. So to that end I had a conversation with her doctor yesterday about 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 Hazel-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 and slightly weighty heart, to what kind of ritual we’ll organise to farewell her and celebrate her life. And 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 particularly lovely pieces of ritual you’ve been a part of? And I’m thinking here about the whole process – from now through to a gathering after the funeral service.

If you have any thoughts, I’d be very grateful to hear from you at tink@pekapekahill.nz

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