The end of an era.

Tags

Atul Gawande, books, Death, families, illness, Ivan Illich, Nun's, Nurses, old age, reading, the yellow bicycle

(Pedalling the yellow bicycle along potholed roads has taken its toll)

The yellow bicycle is upended in my sitting room in front of  the fire.

It lies in an undignified manner resting on its saddle and handlebars, wheels in midair. Rather like a large beetle who has fallen onto it’s back and cannot right itself.

Whenever I pass it, I spin it’s wheels compassionately.

Apparent only to my sharp eye, as they turn I watch a barely discernible wobble, the rear one more so than the front.

I know this bicycle so well.

You see a fair few spokes are broken, some even missing entirely.

All that cycling along bumpy roads and being hauled across mountains and bogs has taken it’s toll and I have sadly come to the conclusion that I must to buy it a new set of wheels.

I am emotionally attached to the old ones for they have carried me many miles over the years.

I also realize that without the yellow bike there is no blog! so, while I wait for the new wheels to arrive I have abandoned my writing and taken up reading instead and luckily someone has sent me an extremely interesting book

Atul Gawande’s book Being mortal is a curious book for a nurse to read. It dwells on the subject of dying and how these days we push the very thought of death to the side.

We must stay alive.

We must not contemplate death.

God forbid it is ever part of our conversation.

The book reminds us that in the past we lived nearer to death but in these times of good sanitation and nutrition we need reminding that we all must die at some point.

It suggests that even if being actively treated with chemotherapy or radiotherapy or surgery, It is no harm to have an alternative plan up one’s sleeve in case these modern treatments don’t work.

And to accept the fact that sometimes we are, with modern medicine, actually only prolonging the process of dying which is all very well until fear and pain become part of it.

We should be permitted to talk about what we fear most and very importantly, how we would like to die but there is this underlying sense of shame and even failure especially by the person who is dying so therefore no one is willing to bring up the subject.

When I initially started reading, my nursing hackles rose, for as nurses we are trained to boost and reassure our patients, to keep them going, to make them at better at all costs.

But the evening I finished the book I felt as though a huge weight had been lifted off my shoulders. Insanely, in my course of work I had almost felt a personal failure when my patient did not get better.

~~~

I passed the book on to my mother.

I should mention here that my mother is an avid reader on a wide range of subjects.

The fact that she read Ivan Illich’s ‘Deschooling society’ while rocking my youngest sister, then a baby,asleep well into the night, should give you some indication of just how wide.

My mother is also a practical woman who realizes and fully accepts that having ever increasing heart failure she is on the downward slide towards inevitable death.

But she has still aways to go as long as she is not run over by a bus or falls over a cliff.

She is delighted with the book and was alreading reading steadily and turning the pages with glee , nodding her head in obvious agreement when I left her, barely raising her head when I said goodbye.

I am glad the book pleases her though whether my siblings will see it in the same light is another matter.

Encouraging my mother to embrace death may not be a good idea in their thinking.

I now wait for the onslaught for my action.

We are a large family of eight children and, though for the most part we get on well, when it comes to my mother we are very territorial.

Let’s say we are divided into two halves.

The town half, who live beside my mother and the country half, who live, well….in the country.

And this is where the problem occurs.

The two halves are very judgemental of each other.

The town half think the country half don’t do enough for my mother and the country half feel the town half are ineffectual with her care

My mother is partly to blame here. She is not only stoic, but stubborn too and will often put her foot down and refuse help of any sort.

She clutches her wad of medications as close to her chest as she does her ailments and none of us have any idea when she develops a rash or abrasion or if she even takes her tablets. She is also too strong still for even my oldest and manliest brother to wrestle them physically from her.

When a recent row broke out between the townies and the country ones over the absence of a promised public health nurse to dress a tiny ulcer on her leg, she stayed silent and watched until things began to get vicious before stating, that the hospital had actually rung with an appointment for her to get her leg looked at by the diabetic team.

We all stopped out of breath and in a sweat to stare at her.

‘But why didn’t you tell me’ one of the townie sisters asked her crossly.

‘Ah there was no one around to bring me in’ my mother answered defiantly.

‘That’s not true’ my sister retorted ‘I was here all morning.

‘Well I didn’t see anyone’ my mother said petulantly.

‘Why didn’t you just ring me’ My sister was so exasperated that I thought she would explode

Instead she turned to us ‘See! that’s exactly what I mean! you just can’t win’.

‘No One’s blaming you’ my counrty sister replied disdainfully.

And we were off again, our voices pitted against each other’s.

‘Oh stop it the lot of you’ my mother’s voice sounded hail and hearty above the bedlam.

And we did as she bid.

You see, to be fair, my mother just wants to be left to disintegrate in peace.

And that’s the reason why she won’t let any of us ring the doctor or she won’t keep appointments in the hospital.

She is not depressed and while she slowly disintegrates, she lives a happy and pain free life (thanks to a morphine patch which she does or doesn’t remember to change as the humor takes her).

She points out with pride how her friends, who minded themselves more carefully, are all dead but in the next breath says, that she is happy to die when her time comes and then she reminds us how hard it is to die even if you want to.

~~~

But back to my siblings.

Besides being halved by orientation, I have also taken it upon myself to score us in terms of practicality.

My eldest sister, who lives in denmark, gets a two out of ten.

(The two is for her phone calls and letters to my mother)

She is a daydreamer and lives too far away to be of any use.

Plus she joined a convent a few years ago and they confiscated all her worldly possessions, so when she decided she had enough and left, they kept her stuff and now she is quite poor and can’t afford to fly home too often.

Interestingly when she joined the convent she thought that, being an artist, she would be allowed paint icons and holy pictures for them.

Instead she was sent to work in the kitchens peeling vegetables.

A lesson in humility was the explanation when she queried it.

My mother does have one photo of her whilst there.

The slightly blurred image shows her wearing a brown habit and a veil, which is perched sideways on her head. She is pushing a wheelbarrow in which another novice similarly attired is sitting.

They are both laughing at the camera and look happy and carefree in a ‘sound of music’ sort of way but maybe that’s because they were hatching their plan to escape or maybe their smiles were just for the photographer.

And who would blame her for wanting to leave! It was a luxury denied life because apparently when my mother sent her over some foot cream for her cracked heels (they wore leather sandals summer and winter) it was confiscated.

Anyway she is happy now to be free, even if poor and unavailable to take a turn in looking after my mother.

Next on the list is my sister from sligo who gets a ten.

She gets a ten because she is the queen of practicality, renovating a workhouse and turning it into a beautiful home almost single handed, there is nothing she cannot do.

Being the nurse in the family, I follow close behind with a modest eight (as I am doing the scoring I can’t very well give myself a nine, though I would like to).

My youngest sister deserves an nine too but is extremely busy running around after her  young son and twins and cannot be counted on.

My second youngest sister would also gets a nine but lives too far away.

For my long suffering sister who does the most for my mom( lives beside her and gets the least thanks) I will score a five (remember the scores are on practicality) I gave her this score because when we talked about helping my Mom have a shower, she said she would have no problem getting into her bathing suit and going into the cubicle with her.

This image did not sit quite right with me.

I burst out laughing, envisaging her wearing a snorkel, goggles and even flippers whilst my mother shivered nakedly but stopped quickly when I saw my sisters vexed face. (She saw nothing wrong with her suggestion)

‘It is easy to shower another being when you are fully clothed (I as a nurse know this)’I pointed out ‘But also it seems a bit unfair that the older person would be naked whilst the younger be more modestly attired and I can’t imagine our mother partaking in such an undignified setting.

To give her her due she saw my point and even smiled and then started to laugh in a way we once did when we were young.

Roaring with mirth about absolutely nothing, my father would get annoyed at our silliness and demand to know what was so funny.

‘nn nothing’ we would stammer, gasping and clutching our sides and rolling about and the crosser he got the more we would laugh helplessly until at last he would snort and march out of the room banging the door behind him.

~~~

On the day I brought my mother the book, I had also bustled in with nurse like efficiency to change the dressing on her leg.

She then, to my surprise, let me wash her long hair over a basin.

My sister stood with mouth agape in admiration.

Today I was the golden girl until I finished toweling her head dry.

‘Ach!  I think i’ll cut it off’ my mother said impatiently as I began to tease out her wet hair.

I was shocked.

My mother’s hair, initially a glossy black and now a soft grey, wrapped around her head in two neat plaits, had framed her face since time immemorial.

To cut it off was surely a sign of nearing the end.

‘It’s actually more manageable for you this way’

I plaited it deftly before she could reach for her scissors.

‘Sure you could do it in your sleep at this stage’  my brisk words were tinged  with sadness.

Surely my feisty mother was not giving up just yet.

One week later I haven’t heard any feedback from my mother on her thoughts about how and when she would like to die or from my siblings annoyance at me bringing up the subject.

Just as the wheels I have ordered have still to make their appearance.

The end