I’m having to backdate this post because the events of Granny’s death – a death which was, after all, a huge relief for all concerned, Gran most of all – were rapidly overtaken by the unceasing tide of everything else, and in any case my immediate writing obligation was a eulogy. I struggled, in composing the eulogy, to keep my anger out of it, and largely succeeded. But in the midst of death we are still plagued by life, so with my fiftieth birthday fast approaching I have been organising beachfront accommodation and steampunk drink dispensers and assorted other fun and games, all the while aware that an incoherent rage was simmering away underneath, awaiting its chance to find language and release.
I’ve blogged about my maternal grandmother and the condition of her final years before, back in 2009. At that stage Gran, at 90, was about to have a hip replacement, which was expected to reduce her pain while pretty much guaranteeing she would never walk again (admittedly a likely enough prospect, sooner or later, with or without the surgery). Whether it reduced her pain I cannot say; her pain was considerable either way, and she was on a morphine patch, regular Panadol and assorted other drugs for at least the last few years. (The patch is a slow-release dosage like a large square band-aid; they stick it on your back and renew it regularly.) Of course she never did walk again, and the three years she lived after that surgery crowned an exquisitely, inhumanly drawn-out decline. To tell the truth, her passing was for me a solemn rather than sad occasion; after Granddad and Mum died in Dec’06-Jan‘07 Gran had little heart for life, and the ensuing five and a half years were simply a wait for death – patient, valiant and courteous at first, then increasingly wretched, painful and confused as her body and mind gave out.
I remember my grandmother as a youthful, elegant, vivacious and attractive woman. From her girlhood she loved to dance, and she played tennis in her prime and bowls later and was physically active well into old age. Even when she was reduced to using a walker I remember her hobbling determinedly round and round the circuit of the nursing home, maintaining what fitness she could. But by the time she died she was completely crippled, her legs twisted stiffly to one side at the hips and dreadfully withered, her left arm useless, contracted in a tight, painful, ugly spasm after her last stroke. She was blind but for light and shadow, had limited movement in her good arm, couldn’t tolerate many foods and was plagued by a variety of skin problems. For some months she was on a medication whose side effects included itching so violent that she would scratch till her body was flecked with blood. Her toilet functions were no longer under her control, and she wore napkins day and night. Her spasmed hand tended to develop fungus and skin-rot in its clammy creases, so she wore a sheepskin pad that hooked over her thumb and strapped round her wrist. By the end, her mind had long since given out under the strain of grief, confusion, humiliation, longing, and religious crisis.
I’m sorry; this is obviously not a fun read, but I find myself obliged to detail the reality of her life with a fierce forensic insistence precisely because we are so reluctant to face the issue. I learned many things from my grandmother, mostly through her gentle positive reinforcement. But it is this last, uncharacteristically bitter lesson I want most urgently to pass on: under the state as we know it, if you fail to face death proactively – if you allow uncertainty to dictate inaction – you may find only too suddenly that you are caught, deserving or not, in a living hell. You are now in the charge of a bureaucratic system, and for the sake of the individuals, corporations and government departments responsible for your ‘wellbeing’, your death must happen in a way that makes it clear that your carers did their utmost to keep you alive. Such a death may be untold, agonising years away, and your carers (who are neither fools nor sadists) may shake their heads at the madness of it all, but they can do less and less to ameliorate your misery.
I want to emphasise at this point that Gran was getting the absolute best of care. As the widow of a war veteran and recognised for her own war work (on a switchboard and as a driver), Gran had all her medical expenses paid by the Department of Veterans’ Affairs. She lived in a state-of-the-art nursing home in the RSL complex at Narrabeen, where the staff are highly skilled and genuinely caring. Over the years I got to know most of them by name, and though I rant at the system they serve I consider them, in the scheme of things, absolutely blameless. Blame is an issue I’ll leave till later, because it should fall where it will only once the whole story is told.
There is a slippery slope from care to abuse, and another from capitalism to neglect, and they often seem, for the elderly at least, to run parallel – or now and then to toss you from one caboose to another. If only the ride were as rollicking as my clumsy metaphor makes it sound; in reality, the more sacred life is generally held, the less the individual owns it – owns their own life – and the more disempowering, prolonged and humiliating one’s last infirm years are likely to be. The fortunate will remain upright, able and largely independent until a mercifully swift collapse. But many, many others (will you be one?) spend long years acutely enfeebled in mind or body or both – raving, drooling, scratching, shambling shadows of their former selves, ghastly to their families (even those who dearly love them) and, truth be told, to themselves – brought to terror by a constant disorientation, driven to catatonic madness by the inability to escape a hideous TV show in the common room, seeing the high point of each day in a bowl of ice cream.
The metaphor of the slippery slope is irresistible, leading as it implicitly does to the grave. And indeed, I attended my grandmother as she slid slowly down it, from supported independent living (retirement village apartment with visiting cleaner, food deliveries and medics on call) to hostel (her own room and bathroom, lots of common space and assistance; you need a simple numerical code to get in and out the door of the complex). When you can no longer walk or your dementia is advanced enough that you need extra attention, you are transferred from hostel to nursing home (hospital-style private room and adjustable bed, and enough staff to wheel you to the dining room for meals, operate the hoist to move you from bed to chair to toilet and back, bathe you, change your napkins, turn you in the night, and so on).
When you can no longer sit up straight enough to be safe in a wheelchair, they shift you into a ‘tub’ chair, a big recliner armchair on wheels. Gran spent her last couple of years in one of these, into and out of which she was hoisted, splayed in an undignified squat, in a mechanical sling operated by two of the nursing home staff. The tub chair could be tipped to vary her angle of recline, but, given her acutely arthritic condition, sitting in it every day tended to bring on pressure sores. On days when these flared up she was confined to bed, since (notwithstanding the various unguents applied) lying flat for a while was the only cure. Not that she physically could lie flat; her knees were permanently bent and she had to be regularly turned from one side to the other. She lacked the agility even to reach the button to call the staff.
As she lost all dignity, autonomy and identity, Gran began to say and do things she wouldn’t have been caught dead doing in her right mind. She didn’t have much of a swearing vocabulary but she who had always been so ladylike did grow quite bold and blunt. She revealed a wistful fondness for men, flirting delicately with my boyfriend, who thought her an absolute darling. In the last few months, as she got sicker and weaker, she often could not bear to wear her teeth, and the fretful plucking motion of her good hand frequently lifted lap-rug and skirt to expose piteously withered thighs. In the last month or so I saw her several times pick her nose and eat it. In the last week or so, she took to howling in unmitigated distress – a loud, random, bleating wail that reminded the Tibetans among the nursing staff of the goats back home. They were compassionate people, but they only knew Gran as this fretful, helpless ruin of a creature, and a bit of a giggle helped them cope.
No one deserves to live their final years like this, and it is a supremely bitter irony that we (and no doubt the rest of the Anglosphere) have inflicted such a vile predicament on the very generation to whom we sought to guarantee a peaceful, dignified end. Every care seems to have been taken, so what’s going wrong – and who is to blame?
It does annoy me that the state government has repeatedly refused to pass sensible euthanasia laws but the truth is that even if they had, it wouldn’t have helped Gran. In fact, one of the main reasons for the government’s cowardice is the same reason that kept Gran uncertain till no law could have helped her: religious fear. Gran – a staunch (though certainly not evangelical) Protestant Christian – longed for death from the time she lost her husband and daughter. In fact, some years before Granddad died, horrified by the sight of the two of them suffering the debility and pain of old age day after endless day despite their relative peace and affluence, I once asked her if they didn’t sometimes think of driving their car over a cliff together, or some other conclusive mutual end. Her answer? “Oh yes, but you can’t think of such things. You just have to go on the best you can.” She was nothing if not valiant, but by a couple of years after Granddad’s death “yes, but” had become something a little sadder. Leaning forward on her walker and fixing me with a rheumy, pained, but still fierce gaze she would hiss, “I wish the good Lord would take me now!”
She said this defiantly, shaking a little, clearly feeling that uttering this simple, painfully felt truth veered close to heresy. I remember when they put her on antidepressants, because as her condition steadily worsened her misery would not, could not lift by any other means. I think by then she was enduring a very long, dark night of the soul – a religious crisis brought on by the failure of her ideals and the betrayal of her faith. I remember her pitiful confusion: “My friend Lorna, she was much wickeder than me and she’s long gone. I don’t understand what I did wrong.” She knew I was not a believer, and I knew I was the only non-believer to whom she could talk of such things; her other confidants were all churchgoers. She occasionally challenged me: if I had no religious faith how could I hold convictions of any moral standing? I always answered with the simplest common sense I could find: good people deserve good treatment, good intentions merit mercy. If God is real, you’re going to a good place; if God is not real, from what we understand you’re still going to a good place. I don’t think I was much influence, apart from being the one listener to whom she could voice her doubts without having them denied. I remember her vacillation, her fear of committing a grave sin, her puzzled incredulity that she could be in such an unreasonable predicament. I remember the earnest, empty platitudes of the church workers who visited her. And I remember the bitter shift in her conviction, almost three years before she died: “If there was a pill, I’d take it!”
Alas, by then, even if there were a pill, she would probably not have qualified to be allowed it: in countries where euthanasia is legal you have to be in your right mind to be given the means. Gran was already showing signs of the temporal and spatial confusion that would make her final years such refined torture; in her last year or two she could no longer find the way to her room; she no longer knew what year it was, or whether her loved ones were alive or dead. I did some research on euthanasia, and discovered the favoured loophole. The only medical way out was to demand morphine from her doctor in increasing doses, but this was too tricky for her – not only too difficult to remember but also too calculated and sustained a campaign for her already-stretched conscience to allow. She could suspend superstitious fear long enough to swallow a pill, not long enough to override a doctor’s oath by stealth.
Christians generally believe that in the matter of death, we have no right to decide. The fact that you are alive means it is God’s will that you live, and your responsibility to make the best of it, no matter how irremediably horrible it is. If this flies in the face of logic and compassion, then logic and compassion are wrong – or rather, logic and compassion must be twisted into hideous parodies of themselves in order to justify God’s apparent cruelty. That, unfortunately, is just how faith works. For people like my Gran, it stayed her hand until her own hand was too feeble for the task, and she was forced to hold it out in vain supplication to people who wanted to help – with either assistance or spiritual reassurance – but who had nothing adequate to the task. My grandmother should have had a peaceful death in full command of her faculties, and well before pain, debility and disillusionment made a mockery of her life, her character, and her service to her family and the nation. Instead, her faith kept her imprisoned in a wretched oubliette of the soul, tortured by a moral code so obsessed with its own warped and self-serving idea of life that it cannot afford to acknowledge the reality.
I wish I could have made this post pithier – more concise, better organised, more orderly in its argument. But my thoughts seem jumbled and clouded by my grief – not so much for the loss of my grandmother but over the appalling injustice of her final years – and the overtaking events of ensuing weeks have somewhat subdued the rage that might have pushed my arguments into better shape. I spent the last nine days of Gran’s life by her side, something I’ll always be profoundly glad of, and there is a rather more uplifting account of this time in the eulogy. I’ve decided to publish that in the Writing section of my soon-to-be-launched website. When that’s done I’ll add a link here.