Death visited last week, snatching away a lady whom we’d expected would recover. She was 87 years of age, a little disorganised in her brain, not vigorous but not too ill. We admitted her to hospital in the morning for observation and nursing care. Her elder sister had dementia too. She visited in the afternoon, escorted by her carer, a slim Asian woman.
At 3.00pm our patient enjoyed her afternoon tea. At four she took a nap. While asleep she stopped breathing. Big sister called us. Her cardiogram showed a heart attack. Her end of life instructions read: NO CPR. NO RESUSCITATION. She died. I left the dead concealed behind curtains and approached the living. I leaned and spoke clearly: ‘Your sister has just died in her sleep.’ It was the carer who fell onto the shoulder of her client, crying. The elder sister comforted her: ‘Don’t be upset. You get used to that.’ The calm features of the Asian woman twisted in grief, her face suffused. What silent sorrow of her own had been roughly torn open?
Meanwhile death had been stalking another two of my patients for days. I could hear his tread closing on them, unhurried, inexorable. For the younger of the two, death – release from her cancer – could not come soon enough. She begged, 'Let me die. Help me to die.' We gave her all we had, our promises of kindness, the usual feeble half-answers. She lapsed into a dull quiet, defeated by our timorousness.
The elder patient was far from ready. She had lived through the Second War in Europe, had seen much. Late at night she grasped my hand, breathlessly contriving a voice that filtered feebly through her oxygen mask. She pulled me close: ‘What will happen to me?’
I looked at her aged face, searching her: ‘Are you afraid?’
‘Yes.’
‘What are you afraid of?’
’Dying.’ She looked hard into my face.
‘You don’t need to feel afraid. When the time comes you will fall sleep. You will not suffer. You will sleep and you will not wake up. We won’t let you suffer.’
The old lady brought my hand to her chest and gripped it hard, pulling me closer. We breathed together in the darkness. No voice. Her smile said her thanks.
I went to my quarters and fell fast into sleep. My phone rang. When the screen read ‘Unknown Caller’, I knew it would be the hospital calling. Surmise told me death had arrived for one or other of my friends. No, not yet. A third patient, more peremptory, had summonsed death by swallowing two weeks’ medications. With one hundred and forty tablets inside her she dictated to the nurse the disposition of her possessions: ‘Give my good overcoat to this one. Give the money that’s coming to me to that one.’
Sleep was slow to return. I lay and calculated the effects of twenty-eight strong blood pressure tablets, and an overdose of aspirin. I must have slept, for the ringing of my phone disturbed me. ‘Unknown Caller’ again. No, no-one had died. A child had a red throat.
Over the following hours of darkness ‘Unknown Caller’ rang six times. Asthma, wet lungs, fever. No death. At dawn the call hauled me from deep sleep: ‘Come now! Cardiac arrest!’ A large inert body, a small nurse pushing down hard, again and again and again. A flickering trace on the cardiac monitor, a chain of us thumping an unwilling heart, injections of adrenaline, a failed electric shock. No pulse at the wrist. I called a pause, the hopeful triangles on the monitor fell into a flat line. No breaths, no heartbeat. The husband of the inert figure stood, watching, his hand on his mouth. We tried again.
After a time I called a second halt. I listened for a heartbeat. I listened and watched for breathing. I shone a torch into pupils and found them wide with death. I walked across the room to the husband and said, ‘Your wife has died.’ A massive man, erect, he crumpled into silent weeping. His heaving trunk was enveloped instantly in the embrace of a woman I had not sighted. I spoke into the bereaved man’s free ear, ‘She didn’t suffer. She was unconscious from the instant she fell.’ The embracer’s arm groping blindly, grabbed me, held me hard in the grieving ruck.
At length I extricated myself. The small nurse from Uganda wiped his eyes. Another nurse said hoarsely, ‘I was at school with the husband.’
After certifying the death and writing my notes I left the hospital. Outside, the chill of an Alice Springs morning felt welcome on my skin. I wandered to a park and attended to my dawn prayers, delayed by a death.
Tag Archives: dementia
Sylvia and Bruno, A Love Story
I watched an aged couple today as they made love.
She is in her late eighties, he’s a little older. Thirteen years ago, Sylvia (not her name)
became vague and forgetful. Bruno (not her husband’s name) passed the farm on to
the children so he could care for Sylvia at home. For ten years this worked well, but as
Sylvia became less active she gained weight and as Bruno aged he lost muscular
strength, the strength that built the farm that sustained a family. Three years ago, Sylvia was admitted to the nearby nursing home. Bruno visits Sylvia every day.
Until today Sylvia had remained the most placid, easy-going resident in the home. When she was found this morning, burning with a high fever, pale and limp, helpless even to sit, breathing fast, her heart racing, her blood oxygen levels low, she remained that same tranquil, agreeable person.
“She’s severely demented”, said the nurse, “It’ll be cruel if we overtreat her. Let’s just
keep her comfortable.” This is code for, let her die.’
When I met Sylvia at 0630 she gazed at me, eyes wide. Was this recognition? The opposite? What, who, remained behind that enquiring gaze?
‘Hello, Sylvia, I am the new doctor.’
Sylvia, her face pale, yellowed, smiled. I thought of my mother, another placid smiler.
Sylvia spoke, a voice soft, barely reaching my hard ears.
I leaned over her and listened as she spoke again: “You’re the doctor.”
Attending at her bedside in the early morning, clad in my running shorts, vivid cap and colourful singlet, I don’t look like anyone’s idea of a doctor – or a runner. But Sylvia knew.
These were not the words of one ‘severely demented.’
I called Bruno, made the call that relatives know will one day come, the call they dread: ‘Bruno, I’m the doctor caring for Sylvia. She has a fever. I thought you should know… She’s not in danger, but we need to decide what treatment will be best for her and I’d like you to come in and give me your advice.’ A lot of words, too many words. Words to paper over insecurity, uncertainty.
Bruno thanked me for calling. He asked, ‘When would you like me to come, Doctor?’
‘Any time that suits you, Bruno.’
‘No Doctor, you’re a busy man. My time is my own. When will it suit you best?’
We agreed to meet at nine-thirty.
I studied Sylvia’s file. There was a reason for her long stare – she has glaucoma. And diabetes which will make her vulnerable to infection.
I read the family’s biographical notes: ‘Sylvia is a gentle, happy, quiet and kind person; compliant; she has sons, husband, extended family, friends who visit her often; she likes fruit, enjoys stories on television; she understands, even though she answers with only a few words. Please speak to her slowly.’
Elsewhere I read a relative’s observation: ‘I believe Sylvia does not have the ability to consent to or decline treatment.’
Once again I thought of Mum, a patient who’d always agree with a doctor, always wish to defer, to oblige.
I found Sylvia’s End of Life Directives: ‘Keep her clean and dry and as free of pain as possible. Please do not provide therapy that is futile. In the event of acute deterioration or critical event, she may have IV fluids, IV antibiotics, CPR, defibrillation not more than twice, a short course of ventilation.’
I tried to decode the directives: the family allows resuscitation, ventilation and defibrillation – more or less Intensive Care – while excluding futile treatments. But you never know whether intensive treatments might be futile. You do know CPR must be vigorous to succeed. In the words of an Emergency Medicine Physician of my aquaintance, ‘If you don’t break any ribs you won’t save them.’ And short ventilation slides easily into prolonged. Dying is prolonged and deformed; and any living that remains is disfigured.
This constitutionally gentle soul, comfortable in her frailty, undistressed even in her febrile state, would she welcome such rough treatment? What roughness, which bodily incursions, can the family tolerate?
I needed Bruno to help me untangle this nest of contradiction.
At nine-thirty, I found Bruno seated by Sylvia, holding her hand. On her bedside table, a pear, freshly peeled and sliced, waited Sylvia’s pleasure. I introduced myself. Once again I told Sylvia I was the doctor. She looked at me, then over to Bruno. He nodded and her wide face relaxed and fell into a smile. Since my earlier visit her temperature had fallen and her breathing improved.
I listened to the front of Sylvia’s chest. I wanted to examine further, to hear the breath sounds at the lung bases. Sylvia, aged, weak and ill, would need help to sit up. Ordinarily I’d ask a nurse to support her but Bruno was here. Sylvia would know, her body would remember the touch of Bruno’s hands.
‘Bruno, when I sit your wife up, will you hold her shoulders for me?’
I hauled Sylvia’s upper body upright and Bruno leaned forward and placed one hand on each shoulder and steadied her. My stethoscoped ears listened intently to the breath sounds. Faint crackling betrayed the pneumonia I suspected.
Pneumonia, the old person’s friend. Will antibiotics save Sylvia? ‘Bruno, this is pneumonia. It’s a dangerous illness. Do you want us to use antibiotics? We’d give them through a vein…’
But Bruno, raised in a time and a school where the doctor gave orders, replied: ‘You’re the doctor. Whatever you decide will be for the best.’
Deep in cogitation, I applied the stethoscope again. Eventually I looked up. Two large brown hands, the joints wrecked by time and work on the farm, supported Sylvia’s creamy shoulders. Bent forward, held by her man, Sylvia gazed into Bruno’s eyes. I noticed her right hand. Sylvia moved it back and forth along the inside of Bruno’s forearm. Up to the elbow, back down to the wrist, up, down, Sylvia’s fingers stroked Bruno’s skin.
The fingers caressing, moving upon the silence.
Two people, oblivious of this interloper, oblivious of all, man and woman made love and confounded me: where I had wondered how much treatment would be too much, now I sensed how much the two still gave and received from each other, how precious to each was time with the other.
How much treatment will be enough?
Dalia Died
A friend wrote the other day to tell me Dalia died.
I met Dalia in 1972 at the nursing home she ran in Wattle Glen. You descended from the bitumen into a silvan retreat, the buildings concealed behind flowering native shrubs. A quiet path led to a doorway. Through the door you entered a different world: smells assailled you, disinfectant, cooking smells and behind them, always, the smell of urine, the smell of the elderly and incontinent.
Dalia greeted you, her voice musical, her fetching smile stretched over an uneven lower lip, the more fetching for assymetry, her accent French and very pleasing. The bushland at the entry and the greeting upon entering, these redeemed you amid the oppressive smells.
Dalia moved with you from patient to patient. Almost all of them were women, aged, their men long dead, their families generally distant through geography or choice. This young doctor, oppressed by bodies that did not work, by diseases medicine would not cure, by alienating disfigurement and by disfiguring debility, by drooling helplessness, dementia, strange behaviours, this doctor nearing quiet moral panic, redeemed, redeemed always by Dalia. Dalia would proceed to the bedhead, cradle the neck of her charge, sing to the patient the glad news of the coming of the doctor: Here is Doctor to see you, darling. You remember, this is Doctor Howard. He comes to you every week.
Dalia was not alienated, never distanced. Dalia embraced her guests, kissed their foreheads, fixed their pillows, fussed over painless areas of red skin that she would not allow to break down. Dalia spoke to her speechless, apparently demented patient, as if she were wholebrained, fully alert, fully human. Only after taking doctor aside, out of hearing, away from the presence of the stricken, would Dalia allow any concession to incompleteness.
A secular person, she recognised tenderly the spiritual yearnings of her charges, old women born in an earlier age when churchgoing was a norm and a religious outlook sustaining. Poor Thelma, she weeps, she weeps because God has rejected her. She wants to die, she prays for death, and because death does not come, she believes her God will not have her in his heaven.
Now death has come for Dalia. She was ninety two years old.
Dalia left Wattle Glen and our paths did not cross again until a few years ago, when our respective writings brought us together. The accent was still there, the smile, the relentless action of her critical mind, unwilling to yield on any of her concerns. And all her concerns were for humans. I read her memoir, a work of humbling honesty, of emotional privation in Belgium in the middle years of last century, of falling in love, of the ending of love, of emotional collapse, of recovery, of growth, of a thirst for learning. Hers was a life of learning, of ever journeying in her wisdom towards greater wisdom. I thought of Cavafy’s ‘Ithaca”.
As you set out on the way to Ithaca
hope that the road is a long one,
filled with adventures, filled with understanding.
The Laestrygonians and the Cyclopes,
Poseidon in his anger: do not fear them,
you’ll never come across them on your way
as long as your mind stays aloft, and a choice
emotion touches your spirit and your body.
The Laestrygonians and the Cyclopes,
savage Poseidon; you’ll not encounter them
unless you carry them within your soul,
unless your soul sets them up before you.
Hope that the road is a long one.
Many may the summer mornings be
when—with what pleasure, with what joy—
you first put in to harbors new to your eyes;
may you stop at Phoenician trading posts
and there acquire fine goods:
mother-of-pearl and coral, amber and ebony,
and heady perfumes of every kind:
as many heady perfumes as you can.
To many Egyptian cities may you go
so you may learn, and go on learning, from their sages.
Always keep Ithaca in your mind;
to reach her is your destiny.
But do not rush your journey in the least.
Better that it last for many years;
that you drop anchor at the island an old man,
rich with all you’ve gotten on the way,
not expecting Ithaca to make you rich.
Ithaca gave to you the beautiful journey;
without her you’d not have set upon the road.
But she has nothing left to give you any more.
And if you find her poor, Ithaca did not deceive you.
As wise as you’ll have become, with so much experience,
you’ll have understood, by then, what these Ithacas mean.
Ultimately Dalia became a therapist. I thought how fortunate were her patients, what gifts of life she brought them from her lifelong travels to Ithaca.
Dalia became a little unwell a few weeks ago, persisting in her vigorous ways until her last days. When abruptly her blood pressure fell due to a prolapsed heart valve, she asked the doctors to perform the operation they’d ordinarily reserve for one decades younger. When they explained the risk of technical success with accidental brain damage, Dalia elected to die. She accepted a trial of hero molecules for twenty-four hours; when these duly failed, she embraced morphia, chatted with her loved ones and went to sleep, rich with all she’d gotten on the way, and arrived at last in her Ithaca.
Her believer friend, the young doctor of 1972, prays his God will give her rest. At this Dalia would smile her crooked smile and pat me on the head indulgently and forgive my wishful thinking.
howardgoldenberg 