Against the Dark

Twelve days ago we agreed to no more medical interventions.

We would let Mum pass away.

What this meant, time wise, we didn’t know.

No-one knew.

No-one could tell us.

It would not have surprised us if someone had told us it would be long, drawn out and not simple.

The thing is, Mum has had 7 surgeries (following the initial big one to remove the tumour) to try to prevent the build up of brain fluid – which normally works in one continuous system starting in the ventricles in the centre, the fluid moves up, around the brain and drains down, through the brain stem and disperses into the body.

Mum’s CSF (Cerebrospinal fluid) has not done this pretty much since post first surgery.

And trying to fix it, in every way the top Neuro Department in Europe knew how (including things they had never tried before) never solved the problem. 

Mum was a mystery to them.

Two external drains, a pressure monitor, an internal drain, another connected to this one. Replacing this whole system (bit by bit) and then a shunt. A dose of super glue (yup, super glue) put in in the CT scan to mend a possible leak, and on top of that, Epilepsy drugs, Parkinson drugs (an experiment in regenerating dying brain cells) and 4 days lying with her head below her body – to name some of the treatments. 

So when there was a major bleed, blocking the shunt and therefore causing (more) Hydrocephalus, the predicted journey to her passing away is the pressure of blood/CSF build up until the pressure on the brain stem becomes too much and everything slowly shuts down.

You see the dilemma here?

For three months they have worked on ways to stop fluid pressure building up.

Now we are waiting for the same fluid to build up enough to take Mum away to a more peaceful place, to take away the pain and suffering she has been through.

A brain fuck in every way. Quite literally. 

The last time I knew Mum knew who I was was July 10th.

She had signalled (she’d been on a ventilator for a month leading up to this point and had only recently exchanged it for a tracheotomy) to me she wanted something. 

I told the nurses.

She signalled again, and I told her I had told the nurses. 

She blew me two kisses.

But since then there had been no visible signs of recognition.

‘Awake’ meant eyes open. 

She could ‘look at’ a film (we were watching the classic original Swallows and Amazons – a family favourite) for 10 or even 12 minutes before falling back to sleep. 

But her eyes gave away nothing at all.

And for twelve days now she has not opened her eyes at all.

She has not moved. 

She is deeply unconscious.  

We have made peace with the possibility of her leaving us during the night – maybe she would not want to leave with us all here. May be she would be happy to spend the day with us all and then slip away after we have all left.

But what if it’s day time and we are all taking care of ourselves at the moment she leaves us?

I think, in reality (whatever reality means here), she’d be ok with that.

Maybe it’s just me that needs to make peace with it.

Last night a monster visited me.

I heard him knocking at the door.

Saw him through the window.

Feel your feelings?

I don’t dare. And this is unusual for me.

I’m really not a bottle-it-up type of gal.

Should I open the door to him?

Tears exist for a reason – releasing the tension – their sole function.

And for sure I’m holding a lot.

It will feel better, no?

But this is different.

Very different.

The monster is sat right in the doorway, poking me with his boney finger.

But I am terrified of letting him in.

Could it be possible to invite him to just perch on the door mat, just inside the door?

Could this just take the pressure off, just release a little of his lurking pain?

The fear of not being able to shut the door on him again turns out to be too much.

I don’t, really don’t, have the energy it might take to properly entertain him.

I just need to sleep.

I read a book to shut down my thought process and luckily do drift off to sleep.

And the days of holding vigil continue… 13, 14, 15…

Mum is not going down without a (peaceful) fight.

She didn’t want to die.

She said so.

She said she was too young.

She was not wrong.

I sit beside her – laptop balanced on my lap, holding Mum with one hand, typing with the other.

I look up and realise I am just checking if she is still alive.

I swallow hard.

I have looked up to check if my Mum is still alive.

I have looked up to check if my Mum is still alive…

Breathing with a trachee is not silent, neither is it noisy.

But it is loud enough to be constantly conscious of.

Breaks, I’ve mentioned before, can be long – increasingly long.

Sometimes heart stoppingly long – and then Mum breathes again – my heart stopping, not hers.

Day 17 and we remain sat here.

The sunny view of the Gog Magogs.

Mum is peaceful and pain free.

We listen to Mozart String Quintets.

Dying isn’t easy.