living and dying

I feel like unloading; take or leave with no hard feelings…

Since my mother and grandfather died within 3 weeks of each other around Christmas ‘06-January ‘07, I’ve been visiting my grandmother weekly, first at her retirement village apartment, then in her aged-care hostel room, and lately, twice weekly, in a series of public and private hospitals. It has been warming (and wearing) to be able to help, but it’s painful watching my beloved Granny, alone in a way she has never been in her life until now, endure bravely and more or less stoically, as her once-active body and lively mind fall slowly apart around her wretched, unfailing, steadfastly beating heart.

“I wish the good Lord would take me now!” she has said to me, leaning forward on her walker with subdued but defiant fierceness – and other words to similar effect on several other occasions… and here is where I go into a good solid ptooey of a dummy-spit about the health system and the, ahem, ‘medical industry’.

Granny, who as a war widow (Grandad was TPI) has all her medical costs paid by the DVA, has entered the age and condition in which one is constantly monitored and assisted through the day’s basic functions – there being little else you can manage, and you manage basic functions by no means well either – while your pain levels, though constant, are minimised and your general health is kept at its medicated best. The little declines common at this age – which if left to accelerate might lead to merciful release – become an administrative issue: when the patient slips from Level X care needs to Level Y care needs – from, say, being able to go to the toilet without assistance, to needing help – she must be moved from the hostel to the nursing home. You can’t flip back and forth over that line, even if medical policy actually contributes to your seesawing health. Besides, already you’re a mere husk, wretchedly disabled, eating without relish, shitting without control, decaying without privacy. No-one wants to end up bedridden as well, condemned to total dependence on overworked staff who (though many of them are absolute saints) cannot really respect you for what you used to be – but cannot help you towards death either. So you must be maintained at Level X as long as possible, until eventually you slip from their loving pharmaceutical clutch. It’s hardly surprising you’ll likely start to go batty in the process.

There is no way out of the extended wait, for her or me. She is soon to have a hip replacement – at 90 – because although at first she said no, I’m too old, it’s a waste of resources, a surgeon convinced her it will lower her pain levels – though he couldn’t guarantee it would enable her to walk and so stay semi-independent. She tells me she’s hoping the anaesthetic will kill her, though the doctor has assured her that doesn’t happen any more. A modest but staunch old-style Protestant, she lacks the courage of her more nihilistic convictions – in the face of her lifelong upright obedience – and probably didn’t make her wish clear to the doctor. Sadly, even if she did, that was the wrong doctor. She needs to tell her GP, not the surgeon, but such refinements are beyond her understanding these days. And I, of course, can do nothing but ease her daily (or rather bi-weekly) way until time wins or desperation gives her courage to tell every medico she sees.

But how long, forgodsake, how long? This vapid, industrial catering to the basest instinct – shared by the lowest of animate organisms – demeans us all. And not just when we reach decrepitude: frankly, I can think of about a million better things to do with my forties than spending them caring like the family spinster for someone who, to tell the godshonest truth, would rather not be here any more anyway. Poor Granny – Mum was so much better made for this task than I; she would’ve buoyed Granny in her faith, and she wouldn’t have been oppressed by the stupid, purposeless, bureaucratically perverse pointlessness of it all – and the gloomy awareness that one sterling reason Granny is still alive is that people, industries and corporations are making good money out of her misery.

The rabid right claim euthanasia – by definition a ‘good death’ – is a crime. How ironic. I think the lack of a clean, simple, properly counselled, supervised and legislated option to end your life is a crime.

for christ’s sake

I’ve been out tonight watching Geoffrey Robertson (bless him to his inspirational boots) give an excellent lecture on the need for an Australian Bill of Rights – more on this as I read the book. But at supper with my father and sister afterwards – the conversation lurching characteristically from dietary matters to clergy abuse to marijuana, the stolen generation, and the link between sugar and vision impairment, and back around to the immediate menu – Clare happened to mention this:

Washing machine more liberating than Pill, says pope

which brought forth such a guffaw from me that I nearly sprayed my nachos. Clare and I agreed that he was right, up to a point – but only with regard to women who are not allowed to use the Pill.

But really, shouldn’t there be some sort of law preventing dimwit reactionary religious leaders from, er, pontificating about the emancipation of women? I know, darling Geoffrey wouldn’t approve – robust democracy, free speech etc etc. Well, perhaps just a little charter then…

northern animation

Quote of the week, from Shiara, who is moving out of home and into a nice new flat with her boyfriend:

“I don’t need a TV; I’ve got Jason.”

Too true; he is a one man comedy channel. But they do have a TV.

adventures in role-playing

Phew. Christmas is finally over. My family gathers on the 27th and, since the death of my mother two years ago, I seem to have fallen into the role of matriarch (it hardly becomes me) – that is, it falls to me to cook the turkey, organise the rest of the family’s contributions and effectively host the event, though not at my place, since Granny could never get up the stairs. This year I took half my goddamn kitchen to the ‘games room’ of Granny’s nursing home. I’m tempted to reflect further on the event, but it would take time to tease it all out – the delicate dynamics of assembling a bunch of people with precious little in common except blood, frustration, and the best of intentions – and I’m busy packing.

Tomorrow I’m off to the idyllic Glenworth Valley for the Peats Ridge Festival, where I shall be Mistress of the Boudoir for Kamikaze Couture – the dress-up tent. It is my job to have an absolute ball… actually it’s my job to ensure that everyone who comes in has a ball and leaves feeling like a million dollars. My employer called it ‘essentially an interactive performance’ – I can’t see it being anything but fun. To add to the joy I managed to wangle Eug a job as a stagehand, so when NYE midnight comes around I’ll have beloved company – and of course a few thousand likeminded revellers. Jezebel the Kombi is shipshape for camping, we are well-stocked with yummy Christmas leftovers – just gotta grab a sarong for the daytime and some glitter lashes for the night, and we’re off to wonderland :)

aberrant anatomy

Things are hotting up round here with the construction of the website. In the last three or four weeks I’ve half written two blog entries but just not had time to complete and upload them. Let’s try the one that only made it to a sketch in my head, back at the beginning of May:

I have just finished a stint of work as a sample patient for a bunch of anaesthetists learning to inject anaesthetic with the use of ultrasound. This did not involve either being injected or being anaesthetised, but I did get to see rather a lot of my own insides.

You see, when an anaesthetist injects, they are aiming either into the vein or very close to the nerve (depending on what body part they have to anaesthetise) – but the veins, the nerves and the arteries all sit very close to each other. Miss the vein, and the patient will not sleep. Hit the nerve and you could kill the limb… for good. Get the tip of the needle not quite between the required fascial planes and you’ll numb either the wrong part or nothing much. Hit the artery and you get all sorts of nastiness, up to and including death. It’s all a matter of millimetres and – here’s the real crunch – no two bodies are exactly the same. Most people are more or less according to the anatomy textbooks; about 20% are not. Really, it’s amazing they don’t have more failures than they do, since up until recently they’ve been working blind.

But in the last decade or so, with advances in computer technology, they’ve begun to use ultrasound imaging to actually look where they’re going in a body as they put the needle in – a revolution in knockout jobs. The black and white image of veins, arteries, bones, organs, muscles, etcetera, that comes up on the screen is difficult to read until you know what you’re looking at/for, hence the need to conduct workshops and hire body models to sit around all day being coated in ultrasound gel.

And I have to say, it was truly fascinating, because often I could see the screen and follow the tutorial with the medicos, and I learned a lot, not only about the science of anaesthesia and the character of anaesthetists (modest, mild-mannered and moderate is my impression) but about my own internal layout. On the right side, I am pretty much according to the text books. On the left, however, I am an anaesthetist’s nightmare. I have two femoral arteries, two brachial arteries, and the brachial nerve plexus branches early, before the groove into which the anaesthetic is normally injected to numb the arm, so to get a proper block the aberrant branch would have to be numbed by injecting the muscle it passes through. Originally, I also had an os trigonum on the left side, an extra bone in the ankle joint, but it was removed while I was with the Australian Ballet (extra bones in dancers’ ankles are a real nuisance). My conclusion about all this, given what else I know of my heredity, is that my mother was a normal human being but my father is most probably an alien.

mongrel dog

My apartment, as you may have read elsewhere in this sprawling saga, is over the shops in the main commercial block of Redfern. The sounds of the street barrel up my concrete stairwell and resound in my lounge.

Tonight one moment a loud torturous monologue approached, male, clear in tone only but then like shattered crystal past my door: “Switch off all your poofter child-molesting family voices, mongrel dog.”

vale annabelle

Mum died peacefully at 12.45am Sunday 14th January, a month and two days short of her 66th birthday. We were at her bedside.

She fought the cancer for 8 months, which is 6 more than the specialist thought she’d live when he first saw her. At the end, her illness was well-managed by the tireless staff of Gosford Hospital oncology unit ward M2, and for the final few days she was semi-conscious, sedated with a cocktail of morphine, anti-nausea and various other drugs. The doctor said her stomach was a caked mass of tumours. Systemic failure occurred primarily because she couldn’t eat, and because the chemotherapy they tried after she developed an allergy to the first one also produced a bad reaction. Her immune system being so low, she developed pneumonia and one of the medications was to dry the bubbling secretions in her lungs.

She remained brave, considerate and good-humoured to the end, rallying remarkably over the Christmas period to come out of hospital twice on day leave – once to attend the family Christmas gathering (traditionally held on the 27th – this year for the first time it was in a restaurant: the bistro of a club near Gosford Hospital) and once to attend her father’s funeral, at which she did a splendid job of reading the eulogy. Grandad died around 2.15am on the 26th December after a bad fall a few days earlier. I was at his bedside and had been for most of his time in hospital; more on this in another entry yet to be written. His funeral was on the 29th; after that Mum returned to hospital, and one more dose of lethal chemo initiated the final decline.

Both deaths were slow enough to give the family time to say their farewells. Our thoughts are with Granny, who has lost her husband of 67 years and, 18 days later, her daughter, her firstborn. Mum was born while Grandad was away fighting in WWII, and given his name as her middle name; she and he were alike in many ways, physically and temperamentally. But Grandad was 94, and with that and the longevity of the women in our family, we didn’t expect to lose Mum so young. Our thoughts are also with Dad, who at 76 is frail himself, but who has done a wonderful job of looking after Mum through the months of her illness, shouldering the burden of tasks often unfamiliar to him and rising to every challenge. We will do our best, for him and Granny, to help ease the challenges of this new condition: more visits to Granny and more Sydney visits for Dad, I say.

s’all happening

I’ve been trying to write a longish entry about the last couple of months but life keeps getting in the way. We are mid-Sydney Festival so I have lots of major shows to review; I’m still trying to record the vocal tracks for Siren’s songs but have stopped for the moment; likewise the much-needed spring-clean of the house is on hold because I’m now up and down to Gosford every day or two – Mum is in hospital again. The end has come quite quickly; she is no longer entirely conscious and the nurses say she has only a few days to live.

a reprieve

After last night’s high drama we are back to the anxious waiting game. Sometime around midnight last night the resident doctor came to check Mum over and pronounced all well enough under the circumstances. We had panicked when Mum, after one day of clear fluids (following almost a week nil by mouth), had vomited several times in the evening, and some of what she brought up was blood, both old and fresh. But the midnight doctor said it was all probably just a reaction to the stomach pump (which had been removed that morning); she was otherwise in good shape considering, and would stay on clear fluids.

Today she took nothing but lemonade and lemonade ice blocks, and water. She was wan and tired, but a whole lot better than she sounded last night. Now we wait till Monday morning sometime, when her very successful, rather elusive, frightfully proper oncologist will be dropping by on his rounds. He is the only one who can, or might, put a figure on how long she has left.

in the midst of life we are in death

My mother is dying. The cancer they tried to cut out, then tried to poison with massive doses of chemicals, is growing so fast it is blocking her bowel again and now she cannot take even clear fluids without bringing them back up. Surgery is no longer worth the damage it does. Chemo just isn’t working fast enough. She is running out of options, and time.

And she had so much faith.

We are preparing to gather bedside en famille, and have asked that she stay on the drip at least until her devoted only grandchild can get back from Japan.