On Death and Dying

In recent weeks the topic of death and dying has been much on my mind.  Not because my own demise is imminent, but because my father died a few weeks ago, and I walked by his side during his final weeks.  I sat with him during that last morning of desperate struggle as he fought to retain the ability to breathe over the asbestos driven fluid that filled his lungs and slowly drowned him.  He was conscious until the last ten minutes or so and his dying was not in any way easy.  It was dreadful for him and was confronting and distressing for me.

To not be able to alleviate the suffering of another person is something truly distressing.   I should acknowledge at this point that my father had recently celebrated his 97th birthday and realistically he did not have a lot of time left with us.  He was relatively fit, aside from that disease and still had a current driver’s licence but his failing hearing and eyesight heralded the degeneration of life quality for him.  I am not meaning to in any way sound as though I am dictating the useful end of another person’s life when I say ‘It was time’ but in reality it was and I knew that as I sat with him that last morning.

Added to previous bereavements, my family is now halved with this recent death.  Understandably my own mortality is something that occupies my thoughts.  I have witnessed suffering, anger, grieving, indignities and depression in each of those deaths, though my mother’s cancer was rapid and saved her some of the prolonged physical distress.  I have also witnessed the loss of control over one’s life and the double edged sword on not only having to rely on others to a significant degree, but the impact on those who are relied upon.  Although not specifically relevant for me in this case, in many circumstances  the caring role impacts on the carer’s family life, social life, working patterns and even finances.  Is it surprising therefore that there can also be distress and resentment on the part of the carer at having their life subpoenaed in this fashion?

To be confronted with death at a time before you are either ready or accepting is a pain that I have not personally experienced.  I have seen how soul-destroyingly hard that is for the person who is facing that end when there is still so much they wish to do, or family that they do not wish to leave.  The unfairness of it all is indescribable.   Having said that, I do not wish to linger beyond my ability to exert self-control.  I hope that I will have the inner knowledge and resources to face that prospect and to make the most of the time that is left, and to plan the manner of my departure.  I don’t wish my life to be prolonged beyond what is reasonable or comfortable, simply because medical technology is able to delay the date of my death, nor do I want to be an imposition on my nearest and dearest. 

I fully appreciate that not everyone will feel this way about their personal circumstances but the quality of life is very important to me.  When I feel that can no longer be maintained at a reasonable level, I will take steps to control my circumstances.  Thinking about this now is important, as leaving it until the situation is dire may mean that control is no longer within my grasp.

Dying is not something that we do well in our society – we are scared and removed from it and are not able to talk about or plan for our own demise.   I support the concept of voluntary euthanasia.  Nicholas Tonti-Filippini, a medical ethicist who is currently confronting his own terminal illness made an interesting comment.  

Rather than help to die, the cause of dignity would be more greatly helped if more was done to help people live more fully with the dying process.

I rarely agree with him but in this instance, I do endorse the second part of this statement – that we should help people live more fully with the dying process.  From what I have observed, death is skirted around, referred to in euphemisms, and the dying person is not encouraged to acknowledge their dying and what it means to them and their family.  That is to the detriment of all involved.

Tim Dunlop, writing for The Drum on the ABC website (11 April 2013) says that ‘Future generations won’t go quietly into that good night’.  I sincerely hope that they don’t.

The Healing Powers of a G & T

As I wrote in my previous post, Monday was the first anniversary of the death of my younger sister.  As one would expect, it was a roller coaster of a day.  I was fine until the first person said ‘And how are you?’

As I struggled to find the words that indicated I was fine, it soon became clear that I was not.  It was a bit of a wet response there for a while as a heap of bottled up emotion overwhelmed me.  It was tiring and exhausting and took me by surprise a bit.  I went up to the cemetery later than planned and it coincided with a visit by my brother-in-law and two of my sister’s colleagues.  My sister was partial to a celebratory gin and tonic, so in my backpack was a bottle of Bombay Sapphire, Tonic and several glasses.  I also took some music.

It was drizzling lightly when I arrived, but that was OK.  It was drizzling and mizzling a year ago as well.  We exchanged our greetings and admired the flowers and roses and one of them remarked that what we really needed now was a G&T.  I made her turn around and whilst they had been talking I had got myself set-up on the adjoining marble slab.  A stiff drink all round, and the mood lightened considerably.  We talked and we laughed and reminisced and admired the view and drank another, this time pouring a little on the grave as well for her benefit.  Why should she miss out on the party?  All the while, the operatic tones of Andreas Bocelli soared out across the valley.

A dear neighbour and family friend is not resting not far away, so I picked a bunch of wild flowers and rampaging freesias  (it’s that sort of cemetery) and delivered them to her grave also.  There was yet another neighbour a few plots away who had a tremendous collection of coloured pencils and used to keep me entertained for hours as a pre-schooler.  I had a chat to her as well.  All in all, it was a comforting visit.

I would not have described myself as a cemetery visitor, feeling that there was little solace in a collection of marble and tumbled headstones and faded plastic flowers.  The setting of this cemetery makes all the difference though.  It is in the Hills, and has a strong character of its own, with many unusual plantings, and different grave decorations.   It’s a companionable place and one that feels appropriate to visit.  We had a bit of a discussion about what to do with her grave, now that it has had a year to settle.  Probably it will have a surround of sandstone built with an infill of soil in order that we can plant a garden of some sort.  A bench seat will be inset at the bottom end, so that there will be somewhere to sit, besides on the adjacent marble slab.  He plot is on the side of a hill, so by the time the grave surrounds are build, the foot end will probably be raised about 60 cms to bring it up level with the head end.  The seat will be set into this elevation.

October does not sound the best of months for my family, but today is the anniversary of the death of our mother.  That was eight years ago now, so it was more a day of reflection rather than mourning.  She was always one for a coffee and cake though so when I met a friend at a beach-side cafe this morning, I had a coffee and slice of cake for mum.

It probably sounds silly, but my remaining sisters and I have been holding our breath around our father this month.  He has recently been diagnosed with asbestosis, and healthwise things have been a bit of a struggle.  There are only a few days left of the month though and in spite of the challenges, Dad is determined and stubborn.  He will be around for a while yet.

Already, a year has passed …

Sitting, and waiting seems interminable.  Living so acutely in the here and  now as we are, it is all we have ever done and all that we ever will do.  It has become our raison d’etre in a world governed by unreality.    People come and go, phones ring quietly, tears flow and desperate hands clutch.  Occasionally within this there is a shared anecdote and laughter. The waiting goes on and we have a cup of coffee.

The changes are so subtle that you don’t really notice them in that whispered room.  When the ragged breathing changes, it comes with shocked disbelief.  Not now, it can’t really be happening now. Mightn’t she hold on just a little longer?  An airborne daughter is still mid-flight.  The final breathe is whisper soft, and then there is nothing bar the sobbing. No final words of farewell – just nothing but still indelibly recorded in the collective memory.

*****

One year ago today, my sister died.  This was not an easy or kind death.  It was a drawn out process over two years, with much of it abominably cruel.  There was a good period in the middle of her illness  where she responded well to a drug trial, surviving longer than expected as one-by-one, others on the same trial did not respond so well and fell by the wayside.  At the official end of the trial, there were only two participants left including her, and the drug company agreed to keep supplying them with the drug, for as long as there were positive indicators.

The company demanded  a continuation of the 6-weekly scans, giving a level of radiation exposure that could precipitate other cancerous conditions over time.  She protested but the response was firm with the unspoken inference.  You are terminally ill anyway, so the level of scans is of no long-term consequence.  She was in a desperate fight for her life – they were concerned for the raw data and clinical observations that her condition was providing.

That good period whilst the drug was working was super-charged.  She joined a gym and pumped weights.  She returned to work and resumed also her presentation and teaching activities, travelling around the country to deliver training.  She attended seminars and on one memorable occasion as a guest speaker.  It was a conference for palliative care specialists and it featured a videoed interview with my sister on the palliative care process from the patient’s perspective but with a medical specialist’s understanding.  I haven’t seen it yet but I gather that it is hard-hitting.  She took questions from the floor and then at the end of the day, in response to an impromptu invitation, gave the closing address that brought the attendees to their feet.

Importantly, she continued her work in Forensic Medicine, focusing on the protection of those who have been subjected to sexual violence.  Even while desperately ill, she insisted on appearing in court as an expert witness, knowing that without her evidence a perpetrator could walk free.  It was the last time that she left the hospital under her own steam.

We have established a scholarship fund under her name, with the recipient to be a mature-aged female medical student entering third year at the University through which my sister undertook her training.  I took part in the interview process to select the first recipient and this Friday we have a Memorial Dinner for colleagues and friends, at which the recipient will be introduced and will receive her presentation.  The legacy lives on.

As sisters of course, we didn’t always have an easy relationship.  She was a few years younger than me, and we were chalk and cheese.  I was the adventurer and risk-taker and learnt from my mistakes – eventually.  She was the considered one, conservative in her outlook who chose her battles carefully.  She was emotionally fragile and very quick tempered, and I was resilient and rolled with the punches.  She was also the bright one and needless to say, the comparisons made by others rankled and were hurtful in our growing-up years.  I kept my distance as much as possible and went my own way.

Ours was a tenuous relationship that fortunately improved over time, and the advent of children had a bit to do with that.  Hers came first and then my son, and she insisted at the last minute on flying interstate to be with me during the birth so that I did not have to be on my own. She gave me lots of support in relation to my son.  When our mother died, she seemed to draw closer to me as well.  She had always been mum’s girl, and missed her dreadfully.  Of course we all did, but my sister was especially devastated.

It’s weird what you find out about people after they die, but it was so clear that my sister had a whole different life to that which was known and understood by the family.  Her reach and influence in the area of women’s health and well being was far greater than we realised, as was evidenced by the number of people who attended her funeral and the number and diversity of speakers.  We knew in general, but still listened in amazement to those who spoke of the differences that she had made to the lives of others.

One patient was so enthralled by my sister that she became a stalker, primarily of her but peripherally of other family members as well – anything to build up the knowledge base about my sister.  The patient suffers mental problems that  probably mean that she will never work or live independently, but with my sister’s mentoring she acquired the confidence and managed to commence a degree in politics at a local university.  This woman pops up everywhere, and I know that when I visit the grave today, there will be a bunch of flowers already there from the patient.  One lesson that I have learnt is that we don’t ‘own’ other people, not even our immediate relatives.  Everyone else retains their own part of them.

The first anniversary is always difficult.  This morning, which the day was still fresh I picked a posy of soft roses and lavender from my garden.  I might add a couple of sprigs of Rosemary for Remembrance, and shortly I will take them to my sister for a bit of a chat.  She has a beautiful plot in the hills, overlooking the valley and so peaceful.  It is a haphazard cemetery where people have planted their favourite flowers and creatively built their own headstones and grave enclosures.  She would be happy with that.