Against the Dark

This morning, at 10:30am, our dear Mum passed away.

In the twenty-three days we have kept vigil at her bedside, she had one dose of paracetamol and one tiny dose of morphine.

And then she quietly and peacefully slipped away.

Allow me to take you back just a few days though.

Tuesday (Day 20), and every now and again I really register that very soon that breath will actually be the last.

It’s hard to process.

No amount of knowing, will soften the moment it happens.

The chemical rush that I know will flood through my body.

I know, because for three weeks I’ve (we’ve) been practising.

Mum stops breathing.

I think that might be it.

I feel the fear creeping across my body.

The inertia.

The heaviness.

The suffocating sadness.

Creeping in from all directions.

Tendrils wrapping around *my* heart and lungs.

And then Mum breathes again.

And the creepers recede and I breathe easy again.

But the actual moment – the performance not the rehearsal – is getting closer.

Sometimes I doubt it will ever happen – Mum just looks like she’s asleep. Maybe she’ll sleep here for months.

And other times, like right now, I feel myself bracing as the sound of her breath is gently breaking my heart.

We’ve been told that the gurgling is ‘normal’ as someone dies.

It’s part of the process.

But because Mum has a trachee she could be suctioned.

And now it’s our choice, or at this very minute, my choice.

How the fuck am I supposed to choose?

Mum sounds like she’s drowning. 

But she doesn’t appear to be in distress.

The deal is ‘if she’s distressed she can be suctioned’ – but suctioning can cause distress.

This fries my brain – so I reach for my computer, and write the above.

Did I think I’d find an answer?

No, I think I was hoping someone would appear to take away the decision for me, or at least guide me through the thought process.

‘If Mum isn’t showing signs of distress we don’t suction’

What does distress look like exactly?

For 20 days now, Mum has shown no signs of ‘distress’.

And if I were deaf she would still be showing none.

Nobody told me what distress sounds like…

Mum does now look like she is dying though.

Her kidneys are no longer functioning, so water has been removed all together – it was very low anyway, there is no evidence that low levels of water make any difference to length of life at this stage, but a low level input meant Mum wouldn’t feel thirsty and that drugs could continue to go through the NG (Nasogastric tube).

If you drink 1 litre of water, about 750/800ml will pass through you, the rest absorbed into your body. 

But if you aren’t passing that percentage of your intake, the rest will be going elsewhere – and in Mum’s case it’s likely this is what is rattling around (in secretion form) in and around her lungs.

It sounds like a boiling kettle.

I hate it.

Every night, throughout Mum’s stay in hospital, we have tried to give her a wash, tuck her up and read her a bedtime story.

Tonight though, after the bedtime routine, she will have the NG tube removed.

The tube that has kept her alive for almost 4 months.

Instead she’ll have a subcutaneous infusion device put in to receive Medazolam – one of the four end of life drugs. 

It’s really happening…

Wednesday morning (Day 21), and as I take my drugs and clean my teeth I reflect that it’s unusual for me to be doing this before showering.

I reach in to turn the shower on.

I seem to be wearing my towel.

Also unusual. 

I wonder why.

I reach to feel the towel – It’s damp.

I remember throwing hair dying paraphanelia out of the shower.

And then I remember drying my feet.

I have NO recollection of showering – but all the evidence is telling me I’ve just done it.

I guess this is new levels of exhaustion.

Later in the day Dad and I comfort each other as he recalls searching the house for his glasses, which he eventually finds in his hand. 

Thursday evening – last night- as I am about to leave, I realise the bay (there are three beds in Mum’s bay) is quiet.

I’d like to say we know it’s our last evening with Mum, but we have imagined this is the case so very many times. 

But surely, it must really be it this time?

I decide this is the moment to play my violin.

I have had it with me every day for the last 3 weeks.

If I didn’t play, it didn’t matter.

If I found the right opportunity and didn’t have it with me, I might regret it for ever.

I quietly ask the other women in the bay if they mind. Of course they don’t.

I play the first movement of Bach’s first Sonata for unaccompanied violin.

And then I say goodbye.

It is going to turn out to be my very last goodbye.

It’s 2am and yesterday has fallen away, tomorrow not yet arrived.

After my last blog a dear, dear friend, who has been with me throughout all of the last four months (by ‘with’ I obviously mean ‘in my phone’ – God, how did we do this shizzle without being able to have our friends sending strength and holding us, right there in our pockets?), messaged and said I should read ‘A Monster Calls’.

By some quirk of fate, I bought this book for my son some years ago – so he rummaged in his bookshelf and appeared with it for me.

What a terrible parent error… how could I have given him this harrowing book as something he might like to read? How did I not see beyond the plethora of prizes?

At last, a huge blessing that he doesn’t read anything beyond graphic novels and non-fiction.

Maybe I was buying it for my future self, I just didn’t know.

I can only think that this book would have had me in absolute pieces at any other point in my life.

The theme – The fear of losing one’s mother.

My mother, the source from which I entered this earth.

The arms that have held me, through everything.

The one I called, in the very bleakest moments of my life.

There was nothing that could hurt me, when my Mum was holding me.

But as I read, in the dead of night, I see that the monster that called for me the other night (see: Dying isn’t easy…), can actually be the thing that holds me now. 

His darkness can hold me gently in my pain.

I do not need to be fearful of him.

He will hold me with strength when I need to be strong, and gentle tenderness when I do not.

When the moment is right to invite him in, he doesn’t need to be something to be scared of.

He will be huge, beyond words.

But he is not there to hurt me, as I had imagined and so feared.

He is there to hold me in my pain.

To protect me.

And to enable me to continue walking through my life.

With warmth and love.

Without my Mum.

And then, this morning, 10:32am.

The call came.

I was just waiting for my brother to pick me up.

The coffee was brewing.

‘No Caller ID’

I knew what this meant – though we were expecting the call to go to Anna, she was next of kin.

It was a nurse I didn’t know.

She told me Mum had just passed away.

Just before she put the phone down she said ‘I’m sorry’.

It was funny – I would have expected it to be the first thing she said, but it hadn’t been.

And when she did say it, it felt unnecessary.

When we arrived at the ward we were met by nurses we didn’t know.

After 2 months on this ward it had never happened before – not a single nurse or HCA we knew.

Like we’d entered another dimension.

If it had happened before Mum passed away we would have been devastated.

It was so important to us that Mum knew – would recognise the voice of – all the nurses that were caring for her.

And that they knew her. They had vested interest and care for her.

And that we knew them too, and felt able to trust them with the most vulnerable and precious thing we had.

But this morning it didn’t matter.

We knew no-one, and although Mum’s body was still there, she wasn’t there either.

We sat. We held. We cried. We laughed.

We had cups of tea with Melissa – the palliative care specialist nurse that anyone would be insanely lucky to have.

And we left.

We said goodbye – but we had said it every night for 4 months when she was alive.

So, poignant, but not so very emotional.

Mum is at peace now.

She is leaving a huge hole in our hearts and lives, and we will obviously miss her like crazy.

But we have had so much time to reflect on the massive, rich and wonderful legacy she has left behind.

The huge number of friends.

The vast number of pupils – so many of whom she gave a love of music they have carried, and continue to carry, throughout their lives.

And our wonderful family.

My Dad, who has found such strength he never knew he had. 

My siblings, without whom we could not have got through this with such love and humour – we will forever be known as Mum’s two naughty girls and her brave little boy – the way she introduced us with such affection both before and after her major surgery!

Her beautiful six grandchildren – all growing into young people she was/would be so very proud of.

Her sister and her family, all the in-laws, nieces, nephews, her great niece…

– All of us touched, influence, made, by her warmth, care and downright awesomeness!

But I think the last line has to go to Toby – her youngest grandson, aged 8, who when told we’d lost our lovely Nana, said 

‘We’ve not lost all of her: we’ll always have our memories’