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| Kay |
The Morphine Mile
A woman is about to die because the only person who cares to save her can’t work out how to. Her name is Kay.<><><>
My brother had recently died the sort of miserable death that brings police to the door. One evening, Kay walked into the living room, sat down, moaned then slumped, becoming unresponsive. Fearing she’d had a stroke, I called an ambulance.
“Hospital is no place for old people. They pick up all sorts of bugs. “Get her to a doctor tomorrow.”
For the first of many times, I explained Kay had recently been cancelling her doctor’s appointments; I feared she may have dementia.
That first hospitalisation set the tone for all following: several rounds of local doctor sends us to hospital, hospital returns us to doctor, doctor despairs at hospital; paramedics twice claim the aged care assessment (ACAT) necessary to accessing support services is conducted by doctor; doctor says no; government agency My Aged Care claims no assessment will be conducted without a “major diagnosis like cancer or dementia.”
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Suddenly she wouldn’t go to the doctors or hairdressers, cancelling appointments. What came next helps make sense of what came before: she may have had difficulty putting together the necessary steps to get there; lockdowns had left her out of practise. The medical clinic’s high doctor turnover wouldn’t have helped; people with dementia are frightened by the unfamiliar.
I thought she was in denial. For all the medical professionals in whom I confided the possibility of dementia, until close to the end, no-one told me what I saw as denial was likely a symptom.
Common in Alzheimer’s and dementia, anosognosia, meaning “without knowledge of disease” describes a neurological condition – physical changes to the parts of the brain responsible for self-awareness – that prevents a person from knowing they have a brain disorder, or accurately perceiving their symptoms.
Anosognosia would later explain why Kay believed she could achieve tasks long beyond her, why she generously offered to shower me when she couldn’t shower herself, – “I tell you what! You’re always giving me a nice shower. How about I give you a nice shower? – why she believed she could still fend for herself when she couldn’t be left alone, why she swore there was nothing wrong with her immediately after being violently ill.
I don’t doubt she was frightened: of COVID, of her time of life, of what came next. Sometimes I found her crying, “I don’t know what’s to become of me.” Kay said she knew I hadn’t intended to stay so long, she should go into a nursing home and let me get on with my life. I tried to convince her that between these two poles lay a middle ground but she couldn’t seem to see it. One night as I tried to talk to her, Mum said, “I know what I’ll do!” Shuffling slowly to her bedroom, she returned with a pair of earrings. “These are for you.”
Recalling her bargaining so desperately for my care, I think the prospect of relying upon anyone other than me terrified her.
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Kay and David
I have disabilities resulting from a spinal injury. I had also long been sick with a sudden, debilitating illness. This was the scenario in which I became a caregiver. I told anyone with an ear either side of their head; it got me nowhere.
A hospital doctor called at 2.00am. I attempted the first of several nearly impossible discussions with medical staff possessed of barely comprehensible English. Her hospital discharge summary asserted Kay had been briefly unresponsive, returning to “completely normal in less than a minute but the daughter had called paramedics just to be safe.” The daughter said no such thing. Kay remembered nothing in between going to the living room and paramedics arriving, twenty minutes or more later.
It soon became apparent hospital staff were prepared to minimise or seize the opportunity to discharge Kay rather than invest time and effort investigating.
She wasn’t their Saturday night, her laughter, the soundtrack to a life. They didn’t smell her rose-scented shampoo, see her delight in tousling fresh bath towels. “I wish we could have fresh towels every day!” How smiling softly, she cradled chocolate sultanas in her palm like they were treasure. Their memories weren’t scented by her perfume, didn’t taste like shortbread and fruit mince pies, the sugared offcuts from her jam sponge roll. They didn’t hear the ‘a’ she’d taken to inserting into the middle of “lovely” or her particular pronunciation of silly billy, a newly coined affectionate term for me, delivered with a theatrical oh you wave. How she still sang word for word with Kenny Rogers, had a crush on Rod Stewart. How her face lit up when I entered her bedroom. “I know what time it is! I get to come out dere and be with you! And we’ll have pink gin and chips!” Their dreams aren’t seared by burning seat belt buckles enroute to Brighton beach, don’t sway to the remembered motion of waves. She was afraid of water so I always stayed close, she floating on a tractor tyre inner tube nearly the size of her. The time Kay, excited by a school of white bait, forgot to lift her face from the waves before crying, “Fish! Fish!” passed into family legend.
How many engine fires did we three kids survive in the back of her Volkswagen? Too many to remember… not nearly enough. They were just another adventure in a time when life stretched before us like the rising sun.
I see her yet in hospital, admiring the chocolate box bow she used to adorn her wrist, bandaged to protect the canula site. Recently finding another bow around her little book of Scottish sayings, I held that which had known her touch like a sacred object. Kay had placed that bow with such an air of satisfaction, like it was a job well done. Perhaps she knew what it would mean to me later.
She is everywhere and nowhere.
How many engine fires did we three kids survive in the back of her Volkswagen? Too many to remember… not nearly enough. They were just another adventure in a time when life stretched before us like the rising sun.
I see her yet in hospital, admiring the chocolate box bow she used to adorn her wrist, bandaged to protect the canula site. Recently finding another bow around her little book of Scottish sayings, I held that which had known her touch like a sacred object. Kay had placed that bow with such an air of satisfaction, like it was a job well done. Perhaps she knew what it would mean to me later.
She is everywhere and nowhere.
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Next morning we went through the same thing. Because the doctor wouldn’t attend, I asked the district nurses for a home visit.
“Call an ambulance.”
“So this is an emergency?”
“Definitely an emergency.”
“This is not an emergency.” Stroppy paramedic: “Can she sit up?”
“Yes, she can sit up.”
“Then why’d you call us?” Besides, hospital is no place for old people, they pick up bugs. Take her to the doctor. Paramedic mouthed off too soon; the assessment picked up red flags.
When I found Mum in Emergency she said, “I didn’t do anything wrong.”
Kay had been scarred by childhood hospitalisations and surgeries, suffering mistreatment by a nurse. As a very young mother in a public hospital, Kay was mistreated again. To all, I explained her hospital terror; it seemed to aquaplane over their heads.
So much in their approach exacerbated Kay’s reluctance and fear: speaking about Kay as though she were not there, shouting unnecessarily at the crown of her head. She had no hearing difficulties, didn’t like being shouted at. Who does? I watched her expression tighten, saw her shrink away as they loudly demanded details of her bowel and bladder functions in a crowded emergency room. Often I intervened, bringing Mum into the conversation, or coming between them to show those were supposed to know better than me the better way to go about it.
Emergency Doctor seized on what would boot her expeditiously from hospital: she needs a knee replacement. Get her private health insurance details, it will help with the specialist referral. I had to press them to investigate delirium. Blood tests ruled out infection; that’s as far as we got.
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Out of all the times I’ve spoken at these things, this one’s my least favourite. My heart is so full, I can’t shape what it holds into words.
Learning how Kay died, the celebrant who conducted her service didn’t bat an eyelid. “Yeah I know. Going around talking to families, I hear these stories all the time about nursing homes.”
Standing here speaking for David, I said I’d realised when we’re young and looking forward, we can’t know that looking back, life’s small moments mattered most. Now I think I understand hard times can be the best times, because they give us the chance to love and care for one another.
I reminded you recently about the nineties recession when we were both unemployed. As things broke down we couldn’t afford to repair them. We froze bottles of water in a bar freezer to put in our broken fridge to keep food cool.
It was a bitter winter with biting Antarctic winds, and the car needed a new battery, so I had to trek up and down a hill we called “that bloody hill” in the freezing cold to shop daily.
Little adventures helped keep us sane, like the time a huntsman spider took up residence in the letter box, and I warned you to check the mail before getting it out. One day, watching you walk down the driveway swinging the mail in your fingers I thought, “She hasn’t looked for that spider.” You disappeared beneath the window then a flurry of white envelopes erupted in the air amid grunting and stamping. Inside, you offered me a bloodied envelope covered in dismembered spider legs “There’s your Bankcard statement, love!” Or the time the rubbish men accidentally gifted a neighbour our new bin lid, and we executed a return offensive under cover of night. Or the time our little Tuti cat, woken by birds, insisted on going out at 5.00am then got on the roof and couldn’t work out how to get down. You and I held a blanket between us, crying, “Jump, Tuti! Jump!” until the neighbours spilled out to see what we lunatics were doing, and to prove we were lunatics, then Tuti got down by herself.
With lots of windows, it was a cold house. The old cat felt it keenly when we couldn’t afford to light the heater. We three sat in the dining room favoured by afternoon sun, you pulling a chair to the window for Ali-Tut, draping her in a cardigan infused by your body heat.
One morning, finding you dressed in several layers of clothes, I asked how you were. “Fed up, miserable and depressed,” you said.
“To make matters worse, nothing you’re wearing matches.”
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Kay tried hurrying to the door to meet the postal carrier. She went down without a sound, did not cry out for help. She managed to get the walker off her, raise herself from the floor and soundlessly return to bed, where she lay trembling until I found her.
Pleading for a home visit from the local doctor, I was told to call a nurse; the nursing service had closed for the day; I called another. We weren’t in their catchment. Good luck, they said.
Kay couldn’t explain her sudden reluctance to shower. Eventually I learned that having fallen, she’d identified the bathroom as a dangerous place: “It’s all slippy in there.” Not knowing this, I pressed her to shower until a tear spilling down her cheek doused my exasperation. “I was never a dirty person,” she whispered.
To spare Kay the danger of navigating the shower hob, I bought a bath transfer bench, consulting Google for advice on how to encourage someone with dementia to shower.
She hadn’t showered in ten days.
That evening, giving herself a little hug, she caught my eye. “It’s so nice to be clean. “Lovely to be in nice, clean, ironed pyjamas.” She stroked the material. “Love-a-ly.”
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Life wasn’t easy for you these past few years. As your needs changed, we found new ways to adapt. If I was the brains of the operation, you were the heart, because the trust you placed in me was absolute, and an absolute honour. Even when you were frightened, my word you were safe was all it took. Helping you shower, I discovered your grey hair was only a veil. Beneath it, at the age of eighty, most of your hair was still a sumptuous mink brown. Together we kept it beautiful with the rose shampoo you enjoyed so much. I’ll remember how you blew bubbles every time we washed your face, and how snug you felt in the robe we put on in between the shower and the bedroom. How greatly you appreciated it all, and how lavishly you expressed your thanks and gratitude, telling me I was beautiful when I came to your bedroom in the morning, or bursting out with “I love you, Susan.” Over the past three years, you seemed to make it your life’s mission to express how dearly you love me.
One evening Kay accused me of trying to kill her.
That afternoon, as I’d called My Aged Care to sign her up and begun making enquiries about bathroom renovations, she’d grown angry. Cooking dinner I heard footsteps behind me. She was red-faced as I had never seen her before.
“You’re trying to kill me.”
Frightened – Kay was stronger than me – I tried to placate her then retreated to the bedroom to watch a New Zealand horror spoof, Black Sheep, my laughter maniacal to my own ears. Mum could be heard in the living room, trying to call police on her mobile phone. Eventually succeeding, she complained to police that I was living off her rent free. “Which I don’t mind, but she has to help. She’s not helping.”
I called an older person’s psychiatric triage unit: “I hope you can appreciate, this service is for emergencies.” In my shoes, I question whether he would have felt less urgent.
I called an ambulance. Paramedics said there was nothing they could do, there was nothing medically wrong with her. Writing down a number for a domestic violence hotline, they left.
Apparently in the small hours Kay called an ambulance herself.
One paramedic towered over her, demanding to know who was doing the cooking and stuff, then? Mum replied she did sometimes; I don’t doubt she believed it.
An aggressive paramedic stormed my bedroom: there were more people in my situation than I knew, nothing special about me. If the local doctor wouldn’t make home visits (in a country town with only one clinic) then I was to FIND ANOTHER ONE.
I was getting ready to pop the guy menacing my mother when I realised some time in the future she might find herself alone in the back of an ambulance with one of these people. Several other richly deserved complaints weren’t made for the same reason.
Paramedics have repeatedly claimed to me that transporting someone to hospital who doesn’t wish to go amounts to assault but, seizing the phone from the tiny old lady who feared her daughter was trying to kill her, Aggro stormed through the house, removing phones from cradles so she couldn’t trouble them again. “I’m trusting you to check on her, make sure she hasn’t had a fall.”
Come Monday I called a dementia helpline in near hysterics, describing Kay’s behaviour, how I called psychiatric triage then paramedics who both refused me. She really needs a brain scan, they said. You can always call an ambulance, or psychiatric triage – they have that mobile service. And you can always ask the hospital for what we call a social visit.
One evening Kay accused me of trying to kill her.
That afternoon, as I’d called My Aged Care to sign her up and begun making enquiries about bathroom renovations, she’d grown angry. Cooking dinner I heard footsteps behind me. She was red-faced as I had never seen her before.
“You’re trying to kill me.”
Frightened – Kay was stronger than me – I tried to placate her then retreated to the bedroom to watch a New Zealand horror spoof, Black Sheep, my laughter maniacal to my own ears. Mum could be heard in the living room, trying to call police on her mobile phone. Eventually succeeding, she complained to police that I was living off her rent free. “Which I don’t mind, but she has to help. She’s not helping.”
I called an older person’s psychiatric triage unit: “I hope you can appreciate, this service is for emergencies.” In my shoes, I question whether he would have felt less urgent.
I called an ambulance. Paramedics said there was nothing they could do, there was nothing medically wrong with her. Writing down a number for a domestic violence hotline, they left.
Apparently in the small hours Kay called an ambulance herself.
One paramedic towered over her, demanding to know who was doing the cooking and stuff, then? Mum replied she did sometimes; I don’t doubt she believed it.
An aggressive paramedic stormed my bedroom: there were more people in my situation than I knew, nothing special about me. If the local doctor wouldn’t make home visits (in a country town with only one clinic) then I was to FIND ANOTHER ONE.
I was getting ready to pop the guy menacing my mother when I realised some time in the future she might find herself alone in the back of an ambulance with one of these people. Several other richly deserved complaints weren’t made for the same reason.
Paramedics have repeatedly claimed to me that transporting someone to hospital who doesn’t wish to go amounts to assault but, seizing the phone from the tiny old lady who feared her daughter was trying to kill her, Aggro stormed through the house, removing phones from cradles so she couldn’t trouble them again. “I’m trusting you to check on her, make sure she hasn’t had a fall.”
Come Monday I called a dementia helpline in near hysterics, describing Kay’s behaviour, how I called psychiatric triage then paramedics who both refused me. She really needs a brain scan, they said. You can always call an ambulance, or psychiatric triage – they have that mobile service. And you can always ask the hospital for what we call a social visit.
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Of me he demanded: “Mum is eighty. Why has she no services in place?”
She had accompanied me willingly. We made another appointment for a few days’ time to discuss a treatment plan for her knee and depression over my brother’s death. Doctor warned against the pain medication prescribed by the hospital. “Those will cause constipation. It’s the last thing an older person needs.”
That evening I noticed Mum crying. “I don’t know how I’ll get to that doctor’s appointment on Friday.” Come Friday, she wouldn’t leave the bed. “I don’t know what you expect of me.”
Trying to persuade her to eat, I went out and bought salad rolls, returning to find her still in bed. I got her dressed but when it was time to go she grew more distressed.
I sobbed, “Mum, please, I need you to see the doctor.”
“Don’t cry, my beautiful darling.” She would do it for me. The wind was picking up, a storm was coming; she jumped and screamed at every movement.
Wheeling her into the doctor’s room, I said, “I can’t cope with this. I need help.”
Doctor who declared her sharp: “I haven’t seen you like this. Susan, do the right thing. Take her to hospital.” At the mention of hospital, Mum, already agitated, grew hysterical. He whispered, “She needs a brain scan.”
“I can’t manage her at the other end. I’m not strong enough!”
“The hospital porter will help you.” (Hospital Porter: “I can’t force her out of the car. The doctor would have been better calling an ambulance.”)
Doctor wrote a script for two Valium. “She’s not but fifty kilograms. Try one first.” Sitting in her car outside Mum’s, we watched the wind pick up, me trying to distract her while the pill had time to work.
She appealed to me in a small voice. “I was looking forward to the other half of roll. Can’t we just go in dere? And have a nice time? I promise I won’t be a nuisance. I’ll just sit in the corner and I won’t say nothing.”
Nothing I said could persuade Mum that hospital wasn’t punishment.
It was a hairy drive, dodging falling branches with Kay in the passenger seat screaming and waving her arms.
Without examining Kay or reading her referral, Hospital Doctor said, “If you take her home, it will be against medical advice.” This because he and Nurse had problems transferring Kay – scared and in an unfamiliar environment – from wheelchair to bed.
“Imagine how difficult it is for Susan, Kay.” (Ah, but it wouldn’t have been difficult for Susan, you ignorant twat.)
Hanging her head, my mother wept. “I help as much as I can.”
“And what if you fall on your prosthetic hip? It probably wouldn’t be operable.”
Now she was truly terrified. But with every hospitalisation they asked, “Are you safe at home? – safe from me.
Where he should have seen red flags for dementia and depression, Doctor attempted a magnificently pointless conversation with Kay about paranoia: “Do you think you’ve been a little bit paranoid?” and inconsolable grief: “You’ve still got her.”
So many – while not doing their own jobs – trespassed into territory where they neither welcome or needed, telling us what to do, how to feel, holding forth on what was right: the hospital doctor who later asserted I was doing the right thing by putting my mother into a facility, when effectively I had no choice because hospital doctors hadn’t established whether the issue putting her there might be addressed; the aged care assessor in whom Mum confided her desperate wish to be with me: “There is Susan to consider, you know;” the mental health nurse who suggested my frequent visits weren’t a good idea – “We’re taught, put yourself first” – even as my mother lay so severely neglected, despite my daily visits, she required urgent hospitalisation and wouldn’t survive.
Few seemed to consider the magnitude of what she faced, the prospect of losing sway over one’s own life, to be at the mercy of strangers, when the evening news routinely exposed the horrors perpetrated in aged care.
Her feelings were to be defined according to her burden to others, her immobility, as though these should erase fear and loss any more than knowing a loved one is dead might erase grief.
I told all Catherine was her legal name; she was known as Kay but they wouldn’t call her Kay. Imagine finding yourself – disoriented, living with dementia – suddenly dependent on strangers who won’t even recognise your name, instead saddling you with “luv.”
Kay was five days in hospital, without any attempt I saw to determine her condition. Hospital staff seemed to believe I’d taken her there to give myself a break.
Social Worker 2 was among the most hostile people I’d ever met. “Are yew feeling bettah?” I began describing our difficulties; SW2 screwed up her face. “I’m not a medical person. I’m just here to see what services you want, if you’re prepared to take her home.”
I blinked. “Well what services are there?”
Miss Passive Aggressive: “There’s all sorts.”
“The last time I tried to access services, they turned me away because of demand.”
Miss Passive Aggressive was clearly enjoying herself: “Well that’s what happens when there’s too much demand.”
Hospital Physio stuck his head in. “I hear she can walk with the walker, so I’m not needed.” He left.
By Tuesday she’d had enough. I found her dressed, sitting in a visitor’s chair outside her room packed and ready to leave. Last evening, she, who due to immobility, would be taken home against medical advice, had made it down three storeys to the ground floor. A couple found her wandering around the carpark, believing she’d find me in her red car, waiting to drive her home. Kay, not staff, told me of this. Knowing she’d do it again, I was petrified. Having seen the inside of a lockdown psych unit after my elderly father absconded from hospital I knew it was no place for old people. It was no place for people. I asked to take Mum home.
No sign of delirium said discharging intern.
“So what’s causing her behaviour?”
Scanning his paperwork, left, right. “I… hey, has she had a brain scan? D’you know?”
I asked Hospital Occupational Therapist for help with our bathroom and a ramp over the dangerous front step; he referred us to the body which had just turned us away. Kay’s suspected dementia would have to be assessed by an outpatient memory clinic. (Eventually the memory clinic, who conceivably might know about anosognosia, called Kay directly to make an appointment, she replying she saw no reason for it.) Having told all I was unsupported, Occupational Therapist: “It’s not safe to leave her alone. Get a relative to stay with her when you go out.” His parting words: “We want you guys to feel supported.”
They sent us home with a pamphlet on advance care directives.
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So lately I’ve been thinking again about how many small moments make up a life and how in the living of them, we can’t possibly know which will become indelible; a special breakfast of hot chocolate and honeyed toast to buffer us against a winter school day. A birthday when you led me to the letterbox to discover the miracle of a Saturday postal delivery. I still feel the tenderness of your hand holding mine and the kindness in your voice, and see the rain, a soft misting drizzle. The time you bought we kids new sheets, how with every wash, you put them on a different bed so we each had a turn at all the colours. I’ve never forgotten trying to go to sleep with the summer sun blazing and in the excitement of those new sheets. To this day I think of them as sunshine sheets. We couldn’t know then that fifty years later, as you spent more time in bed, how important it would be to me that you had fresh sheets and an inviting, prettily made-up bed to rest in. Fifty years later, a once young mother tried to excuse an exhausted middle-aged daughter from ironing nightgowns, and a little girl with sunshine sheets insisted you would have the comfort of a nicely pressed nightie. It would only take a minute.
Sorrow has a taste: lukewarm sausage roll. It has a texture: brittle butter pastry, too long kept tepid. After leaving hospital, we sat in Mum’s car outside a bakery one town from home, grateful for the sort of lousy fare that quells the gnawing demands of bodies indifferent to catastrophe.
While Kay was just happy to have been liberated from the hospital, I recognised we were living an indelible moment, winter sunlight framing my resignation to receiving no help and fears about how I would care for my mother.
At home I regarded the dangerous – as it turned out – illegally built front step fearfully, imagining my mother lying on the concrete in pain. The evening news regularly reported injured people enduring an agonising wait for an ambulance some didn’t survive. Kitten-weak, my joints painfully swollen from head to toe, I had to take her weight. Kay was about to misstep. I cried, “No, Mum!”
She bowed her head. “Please don’t shout at me.”
Later I heard her sobbing in the toilet. My raised voice had caused an accident.
“I’ll help you, Mum. I’ll help you.”
She didn’t understand why she hadn’t known about the accident.
“I think you might have dementia, Mum.”
“But how does dementia do that?”
I didn’t know, only that every time I raised the possibility with doctors, they asked, “Is she continent?” so I figured incontinence was on the cards. To spare Kay the discomfort of delay when it arrived, I socked some pads in the cupboard. Strangely, I still can’t throw them away, recalling, as they do, a moment of tenderness.
Kay woke me in the morning. “Susan, time to get up, love! It’s a work day. I’ve got to help you clean the house.” Thanks to Doctor-Imagine-How-Hard-It-Is-For-Susan, she had formed a plan to avoid further punishment: do more to help.
Reassured she needn’t be put to work, Kay asked me to take her back to bed for “one of those granny naps.” Carefully lifting the covers and sliding beneath, she whispered, as though it were the answer to her problems, “I’m going to die soon.”
Sorrow has a taste: lukewarm sausage roll. It has a texture: brittle butter pastry, too long kept tepid. After leaving hospital, we sat in Mum’s car outside a bakery one town from home, grateful for the sort of lousy fare that quells the gnawing demands of bodies indifferent to catastrophe.
While Kay was just happy to have been liberated from the hospital, I recognised we were living an indelible moment, winter sunlight framing my resignation to receiving no help and fears about how I would care for my mother.
At home I regarded the dangerous – as it turned out – illegally built front step fearfully, imagining my mother lying on the concrete in pain. The evening news regularly reported injured people enduring an agonising wait for an ambulance some didn’t survive. Kitten-weak, my joints painfully swollen from head to toe, I had to take her weight. Kay was about to misstep. I cried, “No, Mum!”
She bowed her head. “Please don’t shout at me.”
Later I heard her sobbing in the toilet. My raised voice had caused an accident.
“I’ll help you, Mum. I’ll help you.”
She didn’t understand why she hadn’t known about the accident.
“I think you might have dementia, Mum.”
“But how does dementia do that?”
I didn’t know, only that every time I raised the possibility with doctors, they asked, “Is she continent?” so I figured incontinence was on the cards. To spare Kay the discomfort of delay when it arrived, I socked some pads in the cupboard. Strangely, I still can’t throw them away, recalling, as they do, a moment of tenderness.
Kay woke me in the morning. “Susan, time to get up, love! It’s a work day. I’ve got to help you clean the house.” Thanks to Doctor-Imagine-How-Hard-It-Is-For-Susan, she had formed a plan to avoid further punishment: do more to help.
Reassured she needn’t be put to work, Kay asked me to take her back to bed for “one of those granny naps.” Carefully lifting the covers and sliding beneath, she whispered, as though it were the answer to her problems, “I’m going to die soon.”
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“No.
“That’s just the way it is here,” sighed he who didn’t make house calls.
Though tiny, this town isn’t far from anywhere, just twenty minutes in either direction from a regional centre, population 60,000, and a major suburb, population 54,000. 80km from Melbourne’s CBD, it’s hardly the outback.
I tried arranging modifications privately – genius! – only to find several months of geniuses ahead of me. And we’d still need approval for the installation of a toilet grab rail from the government occupational therapist. Months later, I learned the referral hadn’t been given, so there was another wait, then Occupational Therapist miscalculated the position. “But “I have to go by what she says,” said the installer. The agency supposed to install it tried to contact me once then gave up. I sent a blow-by-blow account of taking Mum to the toilet: how I leaned over a wobbling walker, twisting her nightgown into a sort of rope held between us to prevent her crashing onto the toilet. I omitted I had learned to visit the toilet first, to spare my mother the sight of terror-piss running down my legs.
Occupational Therapist said, forget about a shower swivel seat. “They cost a fortune! You’re better off with what you have.” Adding to her shower reluctance, Kay was frightened of what we had. Scooting across it also put her at risk of skin tears. I looked into swivel seats myself but my increasingly paralysed brain couldn’t establish whether one would work in the space.
The little help we were given all came too late.
By the time a lift chair arrived, Mum was too frightened by the unaccustomed to use it; by the time I managed to get a wheelchair ramp built privately, a good seven months after it was needed, she was past going out. Had we arranged the ramp through the government or private disability provider who clearly didn’t know what he was doing, it would have cost 12K as opposed to 2K.
Collecting Kay from her first hospitalisation, I’d swung by a bakery for one of her favourite treats then taken the scenic route home. Driving past farms after so long in lockdown, she delighted in seeing “moo cows” and “horsies.”
When I attempted to return Kay’s brand new, government-funded wheelchair to the State-wide Equipment Program, SWEP wouldn’t accept it – “You can donate it somewhere” – until I lodged an official complaint. While others with no time to lose are denied a few last outings – the innocent pleasure of moo cows and horses in roadside paddocks – eBay abounds with listings for the same model wheelchair: “Opened but never used.”
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When you couldn’t shop anymore, how you still helped, wheeling groceries to the kitchen on your walker to save me carrying them. Coming into your bedroom in the morning to snuggle down beside you and have a chat. Our ice cream parties at two in the morning when you couldn’t sleep. Perfuming your arm after showers, you, urging me to have some too. How you wanted to share everything with me. When I bought you chocolates in hospital, you wouldn’t eat them without me or insisted on bringing them home so we could enjoy them together.
After that first hospitalisation we struggled on unsupported for over a year, shoved from pillar to post wherever we looked for help. My conversations with Social Worker 3 were so fruitless I regretted not using the time to wash the kitchen floor. Was it really too much to expect social workers might have some knowledge of dementia?
“What services can I put in place to resolve the situation?”
“I… what services are there?”
Concerned about Mum’s depression, I agreed to SW3 contacting an older person’s mental health service, imagining a gentle practitioner who would understand Kay’s fear and her loss of the first-born child she’d had at just sixteen, but they wanted to conduct an assessment with me – excluding Kay – and “may be able to override your mother’s wishes.”
I sat head in hands as they bombarded my phone with messages, demanding I call back immediately or the referral would be cancelled. I had no desire to override Kay’s wishes. I was doing my best to respect them. I only wanted help.
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During our hospital and doctor visits, no-one warned me to look out for bed sores. Several months after we attempted to enter the aged care system, an occupational therapist enquired whether Kay had any history of them. Until then, they hadn’t even crossed my mind.
Apart from a hospital doctor saying, “Get her to the doctor and get her moving. Old people get constipated,” I had no advice, no support, no warning of how dementia would progress or how to recognise and meet Kay’s changing needs. I wasn’t warned of impending changes in taste, appetite or fluid intake. It was just me and Google flying by the seat of our pants.
I later learned of a pattern caregivers must not allow to establish: passing waste irregularly, an elderly person feels less hungry, exacerbating the problem. Ultimately this can prove catastrophic.
One day in December, I realised Kay was having problems going to the toilet. My paralysed mind attempted to consider fibre supplement? …but… harm ?… something about medicine absorption… …affect medication? With no-one to ask, I made a fruit platter every evening. “Oh how beautiful! How much of it am I allowed to eat?”
“All of it, babe. It’s all for you.”
I’d already twigged to her increased sensitivity to food presentation. Fortunately this was one thing I was good at. Many a time after declaring herself not hungry, Kay mowed through the sandwich I presented points up, revealing the contents. Like most, her appetite was stimulated by the sight of attractive food. These are the simple measures that encourage a person with dementia to eat.
We were about to learn that aged care facilities don’t necessarily have the first clue how to provide care but there’s no coroner riding their bloody case about a contractual obligation to provide adequate care, no coroner riding the Commonwealth for using public money to pay facilities which are “failing to provide any or any appropriate care."
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“You were sleeping so peacefully, Mum. I thought it best to leave you.”
“You mustn’t do that, love. All I want is to spend every possible minute with you and to make the most of every moment.”
Discovering toilet humour late in life, we took to it with juvenile relish. I’ll spare you the running joke that often cured tears but whenever I made her feel better, she regarded this kid who turned sadness to laughter like I was life itself.
Sometimes she cried about my kindness to her. I could only wonder if she was reliving her childhood hospital trauma. As Christmas neared, Kay cried because she couldn’t get out to buy me presents and she cried for my lost brother, but then – “I haven’t got him anything either. I suppose I’ll just put money in his bank account like usual.”
I put a couple of presents out for Kay to see every morning as I wheeled her past the tree. She was canny yet: “If one of them falls off, I get to open it early.”
On Christmas Eve we watched Carols by Candlelight, both of us breaking into spontaneous applause at the end of one song. I was in her bedroom making the bed while Kay insisted that this was kind of me, but unnecessary. Glancing at her a few songs in, I knew I’d never forget the sight. Gaze flitting over the television screen, she was entranced by the sparkle and pomp, the performers’ beautiful gowns. Hands poised to applaud at the end of every number, she encouraged the performers to give her more. In that moment, I felt ashamed, questioning if I provided her with any quality of life at all. How much better might Kay’s life might be in the care of people who knew what they were doing? Her every day might be as happy as this.
I’ll remember our last Christmas together. You were cute as a button, asking me every day whether it was Christmas time yet, bursting into “Sunshine, Lollipops and Rainbows” when you saw the sunshine as I wheeled you past the window. On Christmas Day I put on a glittering Santa’s hat you’d seen me wear before but this time it cracked you up, an honest to God baby’s chortle of the kind that makes everyone else laugh. You couldn’t know as you rested in your bedroom, I made excuses to come in so you’d see it again and laugh again, or that as you slept, I stood at the back door watching the rain and giving thanks to God we were still together.”
Then, on March 20th: “I feel sick.”
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Matron Imperious: “Have you been using the cream?”
“Cream? WHAT CREAM? I DON’T KNOW ANYTHING ABOUT BED SORES I NEED HELP!”
Matron Imperious presented the cream to me like there was really something very wrong with me for not knowing about it. “You can get it at any chemist. We use it for nappy rash too.”
That evening Mum enjoyed a big dinner of home-made lasagne. Next day, she didn’t visit the toilet. Late afternoon, copious vomiting. The local clinic was closing; try the emergency clinic opened to take pressure off the regional hospital. She didn’t feel able to travel in the car.
Hearing Mum vomit again, I, horrified, realised she was still lying down. I got her up, calling the paramedics again and again: she was getting worse. More rounds of vomiting, then, just as the ambulance arrived, she felt better.
They knew how to approach her. She was better than co-operative, enjoying a chat. It was just a bug, they said. Get her to the doctor’s tomorrow. I knew Doctor would say take her to hospital.
“You can’t leave me with someone who’s vomiting lying down. I’m not qualified to deal with this. I’m not strong enough. What if she aspirates?”
They’d leave me with a pill to stop the urge to vomit. God only knows what might have become of her had I agreed – she had faecal impaction and wasn’t passing urine – but if it made me more comfortable, they’d call the Virtual Emergency Doctor. VED was on the fence but decided to transport.
It was the only time Kay got to use the wheelchair ramp. I still see her laughing and joking as they stretchered her to the ambulance – and it still hurts – neither of us suspecting it would be last time Mum would know the comfort of her own home or a shred of dignity.
The next morning I argued with another difficult accent who wanted to let Mum home. “I can’t keep her here against her will. There’s nothing medically wrong with her.”
“You can’t leave me with someone who’s vomiting lying down! I’m not qualified to deal with it!”
“Do I understand you’re saying you want her taken from here to a facility?”
“NO!”
The scan Doctor talked Mum into revealed there was in fact something medically wrong – a massively distended bladder, apparently brought on by my inability to maintain an adequate fluid intake. The hospital inserted a catheter, later trialling her, unsuccessfully, without.
And so in a moment of barely understood conversation in a hospital corridor with two junior doctors, barely comprehensible English muffled by masks, the fate of a human being would be decided.
“I suppose… then…” I took in the floor. “… she’ll have to go into a nursing home.”
Given into the charge of qualified caregivers, so began Kay’s decline.
According to Dementia Australia, “A broad range of evidence suggests hospitals are not good places for people living with dementia.” The confusion and distress associated with hospitalisation can exacerbate symptoms of dementia, causing decline in physical or cognitive health; they are at greater risk of adverse events such as infections, and preventable complications such as falls, pressure injuries, accelerated functional decline, longer lengths of stay, premature entry to residential care and death.”
Within a month, Mum suffered her first bed sore and urinary tract infection. Her confusion and disorientation worsened from day one.
“Hospital stays are also stressful for carers and families of people with dementia because it can significantly increase their caring responsibilities.”
You read that right.
Gratitude has etched the faces and names of many doctors and nurses into my memory. Some regarded Kay with a compassion that seemed to border on love, no matter what she threw at them, sometimes literally. Among those I’d sooner forget: one who approached terrified Kay with an unfamiliar conveyance to take her to the bathroom. “No! I can’t!”
“Show her what you want her to do!” I growled. “Show her what to expect!”
At home, accustomed to my guiding her through every step, Kay talked herself through it. “Now Susan always says, stand up! Now Susan always says, turn around!” In the bathroom she asked Nurse, “What do I do now?”
“I don’t know.” Nurse walked out, leaving an octogenarian with dementia, at high fall risk, alone in the bathroom.
It was the last time anyone would get her to the toilet.
While Kay leapt at rough handling, Nurse exposed her naked backside to the busy hospital corridor until I yanked the curtain across. The nurse with no time found time to pantomime: studying her watch, she palmed her hips and regarded me at length, driving home what a nuisance my beloved mother was.
Dementia Australia: “Dementia training for hospital staff is inconsistent and there is still low awareness of how to support someone with dementia or how to create enabling environments.”
Where I knew to give Kay a few moments to absorb what was asked of her, time-poor nurses, pagers beeping cacophonously, pressed too hard until she panicked. “I want Susan!”
Others seemed to indulge the perverse belief that her dementia and hospital trauma were wilful misbehaviour. Some were open in their dislike, one male nurse threatening Kay with needle stick because he couldn’t get her to drink water. “You drink! You drink! Or doctor say stick with needle!”
Kay simply wanted lemonade.
Long before reaching the corridor outside Kay’s room, I’d hear my name, find her pleading tearfully with a nurse. “Please, I want to be with Susan.” Upon seeing me she drew an almighty breath and the tension left her body. “Where were you?”
“I was here yesterday, Mum”.
“But that was ages ago!”
Sometimes she’d say, “I just want to go home and snuggle down with you forever and ever,” as though if only she found the right way to express it, I would grant her wish.
Often I found her with a tear on her cheek. “They’re rude here. They shove suppositories into you without asking.”
When she complained of pain I asked for two Panadol Osteo twice daily as she had at home. Leaning over her, Nurse Dislike asked if Kay wanted Panadol, sneering when she shook her head. “See? See? She doesn’t really want.” He didn’t allow the possibility that after three years of my caregiving, it may have felt wrong when someone else tried to give her medication. Kay began to speak of being in AG-ON-Y! She was given Oxycodone.
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Sometimes I booted Wee Dog across the living room. She scooped him into her embrace. “Oh no, ye pourr wee thing!” Emerging from the shower, she sometimes discovered Wee Dog hanged from a light fitting. By the neck.
Once Wee Dog was kidnapped, Kay receiving photos from a familiar address. Here was Wee Dog put to work, hanging out washing, Wee Dog cooking dinner, holding a wooden spoon, now, riding the iron. One particularly compromising image captured Wee Dog with a glass of beer and a Lindt Easter Bunny creeping up from behind. He still wears bunny’s bell around his neck.
On impulse I took Wee Dog to hospital – not before I’d put the little bastard through the washing machine – round and round he went before landing lovely and fresh on Mum’s hospital bed. It was pitiful to see her tears, how wide she opened her arms to embrace this reminder of home.
Nearly a month in hospital, Kay wasn’t seen by a geriatrician. I don’t believe I ever learned why the catheter had to remain in place. A nurse said she’d been told – nobody told me – the plan was for Mum to see a specialist as an outpatient after discharge.
One afternoon I heard Nurse Nav in the corridor telephoning a doctor. “The daughter would like an update.” I hadn’t asked. Nav just made things happen. Along with Nurses Shirava, Joel and Alan, others whose names I never learned, she was unfailingly kind and supportive. Somehow they always let me know they were on our side, trying their best for us.
Other than, “it’s all related,” I didn’t learn from Doctor why the catheter had to remain. When she said, “That’s why I get onto these things early,” I inferred, rightly or wrongly, that my inability to keep Mum sufficiently hydrated had caused an issue (whatever it was) that had gone on too long to be remedied. Naturally that stung; it was not for the want of trying, certainly it was for the want of support.
But while Doctor didn’t clarify the medical issues around Mum’s catheter, she assured me, unprompted, that I was “doing the right thing putting her in a facility.”
How could Doctor, not understanding or loving Kay as I did, possibly know what was right for her? And how, other than keeping an inconvenient, ageing body from a sacred hospital bed might “right” be defined, when the emotional life of the person inside that inconvenient ageing body isn’t considered? Did Doctor know how many people pine to death without adjusting to “facility placement?” Had Doctor ever seen inside some of these places, little more than warehouses for elderly bodies? Where ‘care’ is no more than bathing, feeding and medication – with no guarantee they’ll get that much? I don’t doubt Doctor’s kindness or dedication but she was very young. I question whether Doctor will be so assured of what is right when her parents time, or her time, comes.
While an effectively unregulated aged care sector freely commits elder abuse and medical neglect, there is nothing inherently right about placing a person somewhere they don’t want to be – where you don’t want them to be and can’t protect them – because you are powerless to prevent it.
“Don’t feel guilty,” she urged.
“I don’t feel guilty. I feel sorrow for someone who is never going to know the comfort of her own home again.”
Kay had a couple of young nurse-mates, Alan and Joel, who always arrived beaming, no matter how troublesome others considered her for calling out and pressing the buzzer. “Yeah, I know. You want out! How about you and I bust out, take off together?” Nurse Joel wiggled his hips side to side.
Mum liked him all right. “How come you’re always laughing when you come in here?”
“Because you’re very bloody funny, mate.”
“How’s things going with the girlfriend?”
“Yeah, yeah, good. It’s been a couple of years, but if it doesn’t work out, I’m coming back for you.”
I knew when Joel or Alan were on because they helped Mum telephone when distressed by my absence. “My friend was concerned for me,” she’d explain.
One day she began, “I’ve been thinking.” I anticipated either her usual, “How about you and I take off somewhere for dinner?” or “How about you and I take off somewhere else, like Ballarat?” I’d often explained I couldn’t look for a new house without placing her in respite care, and, several months after an application had been made, we’d never been approved. I suspected the “somewhere else” Mum really wanted to take off to may have been a less complicated or frightening time in her life but this day her thoughts were elsewhere. “It’s time we got another little Tuti cat. Life’s all right when you’ve got something, but when you’ve got nothing…” she began to cry. “They don't really want me here. They’re just going to shove me from one place to the other until I die.”
Following her assessment, I thought she had accepted going to a nursing home well enough, enthusing about residents in the local place having their own fridges – you know, for pink gin and the likes – but the next day she was very poorly.
Nurse Alan approached, looking like a broken-hearted man trying not to cry. “Has anyone been in to see you?”
Slowly, fearfully, I shook my head.
“Last night she was talking about how she felt about going into a home… I don’t think she slept all night. This morning she refused all care, throwing her medication, cracking it basically…” I took in the pills on the floor. “I’ll let you know if the doctors have made a decision.”
Sounded ominous, but I never discovered what that decision was about. Apparently it didn’t involve Kay or her family.
I sat beside her bed, Kay rousing every so often to sing a song I’d never heard before or murmur a few words. When I asked what she’d said, Kay told me she was talking to herself and asked me to stop staring at her. She didn’t want me there.
Finding Kay sans catheter one day, I’d hoped it might mean I could take her home, but she’d taken it out herself. Watching four nurses file into her room, remove the other patient and close the door, I thought, this can’t be good. As Kay screamed, “Get off me! You’re hurting me! Get your fingers out of my backside!” I quaked in the corridor. It was a long time before I was allowed to go to her. Wet-cheeked, she seemed drugged.
“I’m here, sweetheart, I’m here.”
She burst into snatches of song, trying, I think, to transport herself to a place where these things weren’t being done to her. Mum knew only I had put her there. Opening her eyes, she said, “You don’t love me anymore.”
I’d heard her shout at nurses, “Don’t you call me Catherine!” The next day I took in a marker and wrote Kay in the preferred name section of her patient board. Kay. Her name is Kay.
‘Later’ is a hated time, when I was at liberty to learn all I needed to know before.
I know now crying or calling out is common in dementia, among the triggers, pain, hunger, discomfort, a too busy or loud environment, anxiety, loneliness and depression. Apparently Head Nurse didn’t know this. Shaking his head, he complained, “She’s still calling out!”
Sometimes watching her, gaze fixed on the room door calling for a nurse, I suspected in her mind, Kay was in a long-ago hospital room in another country. Out of the blue: “You think my mother could have come to visit me just once in hospital.” Then, “When I saw the big staircase at Greystanes, that’s when I always started to cry.” This was her first mention of Greystanes. Research suggests it was a fever hospital; it wasn’t the hospital of her surgeries. Next day Kay could tell me nothing about it
If she had some kind of fever illness, I can only wonder whether she endured a long-term hospitalisation in addition to her surgical stays. I don’t think the person she called for, more than seven decades later, was really a nurse.
During Kay’s childhood hospitalisations, to extricate himself without provoking tears, her father promised he would be back after “visiting the other weans,” leaving young Kay to await his return in vain. Distressed, she wet the bed. A nurse punished her, calling Kay a dirty wee lass. Mum suspected the nurse might have slapped her but she wasn’t certain.
At home, answering her call on the carer’s pager, I’d find her transfixed, looking to the bedroom door for my arrival. To the child abandoned in hospital, I think the appearance of this daughter who always came when called may have felt miraculous. She burst out with, “You’re so beautiful! Oh, you’re so beautiful!”
Her last two months were like watching a car crash play out in slow motion. I kept going for the brake, but the unroadworthy vehicle we were forced to travel in had none.
Since being hospitalised, she’d stopped eating. I couldn’t say I blamed her. The stuff on those plates was unrecognisable as belonging to nature. A person with dementia can’t be told to eat for their own good, like it or not.
It still fell largely to me to try to keep Mum nourished and hydrated. She survived on the sandwiches I took in, tomato wedged between cheese and silverside so the bread wouldn’t get soggy. “How delicious! You have some too. We’ll share.” We had lemonade and chip parties. “Chips are delicious! And lemonade is beautiful!” In my absence, some kind nurses looked to the patient fridge for the sandwiches I left, but not every one did.
Hearing her order sweetened tea, I realised one reason Kay wasn’t drinking it: she didn’t take sugar. Neither could she tolerate it arriving lukewarm. She savoured the hot Irish Breakfast tea I made fresh. “Mmm, lovely cup of tea. Love-a-ly.”
I was often told, “She’s not eating and we can’t force her.” No, but someone might have mentioned the microwave in the downstairs visitors’ cafeteria. A few days short of her transfer I stood staring at for a long time, thinking of all the meals I could have brought from home.
That day, sighting Doctor-Imagine-How-Hard-It-Is-For-Susan righteously taking the stairs, I considered how easy it would be to expedite his descent via a foot to the back.
The hospital elevator chimed the first two notes of Clair de Lune.
Nearly a month in hospital, Kay wasn’t seen by a geriatrician. I don’t believe I ever learned why the catheter had to remain in place. A nurse said she’d been told – nobody told me – the plan was for Mum to see a specialist as an outpatient after discharge.
One afternoon I heard Nurse Nav in the corridor telephoning a doctor. “The daughter would like an update.” I hadn’t asked. Nav just made things happen. Along with Nurses Shirava, Joel and Alan, others whose names I never learned, she was unfailingly kind and supportive. Somehow they always let me know they were on our side, trying their best for us.
Other than, “it’s all related,” I didn’t learn from Doctor why the catheter had to remain. When she said, “That’s why I get onto these things early,” I inferred, rightly or wrongly, that my inability to keep Mum sufficiently hydrated had caused an issue (whatever it was) that had gone on too long to be remedied. Naturally that stung; it was not for the want of trying, certainly it was for the want of support.
But while Doctor didn’t clarify the medical issues around Mum’s catheter, she assured me, unprompted, that I was “doing the right thing putting her in a facility.”
How could Doctor, not understanding or loving Kay as I did, possibly know what was right for her? And how, other than keeping an inconvenient, ageing body from a sacred hospital bed might “right” be defined, when the emotional life of the person inside that inconvenient ageing body isn’t considered? Did Doctor know how many people pine to death without adjusting to “facility placement?” Had Doctor ever seen inside some of these places, little more than warehouses for elderly bodies? Where ‘care’ is no more than bathing, feeding and medication – with no guarantee they’ll get that much? I don’t doubt Doctor’s kindness or dedication but she was very young. I question whether Doctor will be so assured of what is right when her parents time, or her time, comes.
While an effectively unregulated aged care sector freely commits elder abuse and medical neglect, there is nothing inherently right about placing a person somewhere they don’t want to be – where you don’t want them to be and can’t protect them – because you are powerless to prevent it.
“Don’t feel guilty,” she urged.
“I don’t feel guilty. I feel sorrow for someone who is never going to know the comfort of her own home again.”
Kay had a couple of young nurse-mates, Alan and Joel, who always arrived beaming, no matter how troublesome others considered her for calling out and pressing the buzzer. “Yeah, I know. You want out! How about you and I bust out, take off together?” Nurse Joel wiggled his hips side to side.
Mum liked him all right. “How come you’re always laughing when you come in here?”
“Because you’re very bloody funny, mate.”
“How’s things going with the girlfriend?”
“Yeah, yeah, good. It’s been a couple of years, but if it doesn’t work out, I’m coming back for you.”
I knew when Joel or Alan were on because they helped Mum telephone when distressed by my absence. “My friend was concerned for me,” she’d explain.
One day she began, “I’ve been thinking.” I anticipated either her usual, “How about you and I take off somewhere for dinner?” or “How about you and I take off somewhere else, like Ballarat?” I’d often explained I couldn’t look for a new house without placing her in respite care, and, several months after an application had been made, we’d never been approved. I suspected the “somewhere else” Mum really wanted to take off to may have been a less complicated or frightening time in her life but this day her thoughts were elsewhere. “It’s time we got another little Tuti cat. Life’s all right when you’ve got something, but when you’ve got nothing…” she began to cry. “They don't really want me here. They’re just going to shove me from one place to the other until I die.”
Following her assessment, I thought she had accepted going to a nursing home well enough, enthusing about residents in the local place having their own fridges – you know, for pink gin and the likes – but the next day she was very poorly.
Nurse Alan approached, looking like a broken-hearted man trying not to cry. “Has anyone been in to see you?”
Slowly, fearfully, I shook my head.
“Last night she was talking about how she felt about going into a home… I don’t think she slept all night. This morning she refused all care, throwing her medication, cracking it basically…” I took in the pills on the floor. “I’ll let you know if the doctors have made a decision.”
Sounded ominous, but I never discovered what that decision was about. Apparently it didn’t involve Kay or her family.
I sat beside her bed, Kay rousing every so often to sing a song I’d never heard before or murmur a few words. When I asked what she’d said, Kay told me she was talking to herself and asked me to stop staring at her. She didn’t want me there.
Finding Kay sans catheter one day, I’d hoped it might mean I could take her home, but she’d taken it out herself. Watching four nurses file into her room, remove the other patient and close the door, I thought, this can’t be good. As Kay screamed, “Get off me! You’re hurting me! Get your fingers out of my backside!” I quaked in the corridor. It was a long time before I was allowed to go to her. Wet-cheeked, she seemed drugged.
“I’m here, sweetheart, I’m here.”
She burst into snatches of song, trying, I think, to transport herself to a place where these things weren’t being done to her. Mum knew only I had put her there. Opening her eyes, she said, “You don’t love me anymore.”
I’d heard her shout at nurses, “Don’t you call me Catherine!” The next day I took in a marker and wrote Kay in the preferred name section of her patient board. Kay. Her name is Kay.
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I know now crying or calling out is common in dementia, among the triggers, pain, hunger, discomfort, a too busy or loud environment, anxiety, loneliness and depression. Apparently Head Nurse didn’t know this. Shaking his head, he complained, “She’s still calling out!”
Sometimes watching her, gaze fixed on the room door calling for a nurse, I suspected in her mind, Kay was in a long-ago hospital room in another country. Out of the blue: “You think my mother could have come to visit me just once in hospital.” Then, “When I saw the big staircase at Greystanes, that’s when I always started to cry.” This was her first mention of Greystanes. Research suggests it was a fever hospital; it wasn’t the hospital of her surgeries. Next day Kay could tell me nothing about it
If she had some kind of fever illness, I can only wonder whether she endured a long-term hospitalisation in addition to her surgical stays. I don’t think the person she called for, more than seven decades later, was really a nurse.
During Kay’s childhood hospitalisations, to extricate himself without provoking tears, her father promised he would be back after “visiting the other weans,” leaving young Kay to await his return in vain. Distressed, she wet the bed. A nurse punished her, calling Kay a dirty wee lass. Mum suspected the nurse might have slapped her but she wasn’t certain.
At home, answering her call on the carer’s pager, I’d find her transfixed, looking to the bedroom door for my arrival. To the child abandoned in hospital, I think the appearance of this daughter who always came when called may have felt miraculous. She burst out with, “You’re so beautiful! Oh, you’re so beautiful!”
Her last two months were like watching a car crash play out in slow motion. I kept going for the brake, but the unroadworthy vehicle we were forced to travel in had none.
Since being hospitalised, she’d stopped eating. I couldn’t say I blamed her. The stuff on those plates was unrecognisable as belonging to nature. A person with dementia can’t be told to eat for their own good, like it or not.
It still fell largely to me to try to keep Mum nourished and hydrated. She survived on the sandwiches I took in, tomato wedged between cheese and silverside so the bread wouldn’t get soggy. “How delicious! You have some too. We’ll share.” We had lemonade and chip parties. “Chips are delicious! And lemonade is beautiful!” In my absence, some kind nurses looked to the patient fridge for the sandwiches I left, but not every one did.
Hearing her order sweetened tea, I realised one reason Kay wasn’t drinking it: she didn’t take sugar. Neither could she tolerate it arriving lukewarm. She savoured the hot Irish Breakfast tea I made fresh. “Mmm, lovely cup of tea. Love-a-ly.”
I was often told, “She’s not eating and we can’t force her.” No, but someone might have mentioned the microwave in the downstairs visitors’ cafeteria. A few days short of her transfer I stood staring at for a long time, thinking of all the meals I could have brought from home.
That day, sighting Doctor-Imagine-How-Hard-It-Is-For-Susan righteously taking the stairs, I considered how easy it would be to expedite his descent via a foot to the back.
The hospital elevator chimed the first two notes of Clair de Lune.
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I can’t express how much joy you’ve brought me, but I’d like to think I sometimes showed you were never more dear to me than when you were vulnerable and in need of kindness, that in these hard times, you knew tenderness.
Miss Passive Aggressive was at my mother’s bedside, revelling in the spectacle of her anguish. “Look at her! How about a bit of dignity? The staff won’t have anything to do with her! They’re just leaving her like that.” Her top lip pulled up in a rictus of disgust.
I wondered if her enjoyment may be tempered by knowing what sixteen-year-old Kay, as an expectant mother reliant upon the public hospital system endured: gangs of junior doctors conducting internal examinations, the girls ordered to expose their breasts while they wolf-whistled.
Miss Passive Aggressive urged me to be present for Kay’s aged care assessment – “So you can tell the truth!”
I’ll say it again: ANOSOGNOSIA.
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Trying to save Mum from a shared public hospital room, I took her private health insurance details to Head Nurse. He waved me off. “That has no meaning within the public hospital system. Sorry. You’ll have to speak to the social worker.”
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The facility vestibule held COVID testing equipment, instructions taped upside down, obscured by buckets holding swabs.
Jewelled cross around her neck glittering in the sunlight, every word out of Carer’s mouth was a damned lie: a registered nurse, available on the high care unit at all times, would turn Kay frequently. Someone would sit with Kay throughout every meal, making sure she ate and drank. Every evening someone would help Mum telephone me.
On April 16th, Kay was transferred from hospital to an aged care facility. One month to the day, when I got her to Emergency, she was covered in bedsores, suffering urinary tract infection and dehydration so severe the doctor had never seen its like – so gaunt he described her as “obviously knocked about” – and complete renal failure. Grimacing, Dr. Jason regarded me sympathetically over my delirious, writhing mother. “I know. We see this all the time from nursing homes. Hospitals too.”
Finally, she was an emergency.
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She seemed drugged on arrival. Opening her eyes, Kay asked in a small voice. “Is this where I’ll be living now?” Looking around, she was terror struck.
Some idiot said, “Welcome home.” Kay wailed.
“Mum, it’s just for a little while. I’ve got your name down across the road.”
It would be quicker to describe what they did right than what they did wrong.
Someone dumped a lunch tray on the bed table and walked out. I couldn’t work out how to adjust the bed to get the tray over it. By the time the buzzer was answered, the food was cold.
A cleaner I asked for directions on my way out gave me the security keypad code. Glaringly obvious, it exemplified the codes we’re warned against.
Come Saturday the electronic sign-in was down. With no-one on reception, I was at liberty to enter and roam at will. The doughnuts that had accompanied Kay from the hospital were still in her room, having staled for several days. It’s a less than stellar idea to leave sweet choking hazards around someone with dementia.
I later learned there is a mandatory allotment of either 200 or 215 minutes, (inconsistently stated by the Aged Care Quality and Safety Commission) or 3.5 hours care time per day. She got nothing like it. Particularly on weekends, I sat in Kay’s room for hours without anyone appearing. Staff finding me there would jump, blurting they’d been checking on her or claiming they were there to help with a meal that had been left to go cold where she had no possibility of reaching it. She was left on her own in a cavernous room with the television on channels unsuitable for a person sensitive to violence. Half the time they didn’t even put her spectacles on.
The facility was a brick building on a major four lane highway. Such was her torment, on arrival I heard Mum’s roaring outside over the traffic noise. I found her looking tortured, tears on her cheeks, voice ragged. I never would have imagined such a tiny little thing capable of such volume.
Repeatedly staff physically came between me and the mother I was trying to comfort because they wanted a form signed. It was as though they couldn’t hear her. Many – if not most – had an incomprehensible standard of English. This was the setting in which my consent was sought.
I walked in on a nurse trying to complete an advanced care directive with Kay in my absence. “I tried but she…” Shrugging, she pushed the paperwork at me.
Usually when I arrived Kay complained of thirst or pain and I’d have to call someone and ask them to turn her. One day a Personal Care Assistant commented on Mum’s red elbow. The air mat intended to prevent pressure wounds wasn’t turned on.
Kay was so grateful when I offered her tea or lemonade. “Oh yes, please.” And then, “Lemonade is beautiful.” She was frightened of falling out of the narrow bed so they put crash mats down, removing the tray table; she had no access to fluids. Their physio asserted bed rails are illegal in Victorian aged facilities. Not true. Bed rails would have eased her fear and allowed a drink to be placed within reach. Twice – to my knowledge – Kay was found beside the bed, apparently having lowered herself, her pillow and blanket to the floor. The facility didn’t conduct a required a neurological examination afterwards.
Sometimes she was in the same clothes – having slept in them overnight – for successive days. Though I’d supplied a bounty of beautiful nightgowns and a variety of clothes, too often I found her dressed in other people’s clothes – referred to by the facility as “spare,” for which I took “dead” – or dressed inappropriately for the temperature in her stifling room. It seems staff didn’t look beyond one door of the wardrobe for whatever came to hand.
I realised I’d have to go in every day, trying to keep my mother fed and hydrated until I could get her transferred. Every night I crawled into bed at 8.30pm and rose at 6.00am, feeling like I hadn’t slept at all, to do it all over again.
Following Mum’s distress cries from the lift on the other side of the building, I found her alone, an untouched meal beside her, no-one trying to help. “How about you try to eat the dessert, Mum?”
“What is it?”
“Looks like… trifle. I see… cake, jelly, custard.”
It was gone in a few bites.
Desserts, arriving alongside the main meal were often doused in cream which, standing, grew warm before it could be eaten, despite the facility’s warning to visitors bringing in food that cream was a high risk food.
But soon Kay was so full of psychotropic drugs – to which I acquiesced, given no other choice – she wasn’t awake when lunch came and then, having lain in the same position for too long she woke in pain, in no fit state to eat. Immediately after lunch was delivered, staff entered to administer care and medication, ignoring the meal growing cold and unappetising while they worked. One of the head carers entered Mum’s room looking for a cuddle. When I pointed to Mum’s untouched lunch, she suggested I eat it myself.
Too many relied upon me to provide care they were obviously too clueless to provide themselves. “You. You.” A nurse shoved mouth ulcer ointment at Kay, who applied it as lip balm. Then she shoved it at me. “You.”
“She needs help to remove her dentures. Then you apply it to the ulcer.”
She persisted in calling Mum “Kathleen” when I corrected her. Incredibly – I think because it saved her changing the bed when Kay spilled her drink – Nurse wrestled the sip cup from her hand. Resisting, Mum was obviously thirsty.
The bed moving frightened Kay; she asked to be warned first but Nurse bowled up and hit go. Mum roared; Nurse put her hand on Mum’s chest in a mock gesture of comfort, not noticing she had connected with her breast. “There there Kathleen.”
For their monumental failures, they labelled Kay, “Resistive to care, declined to eat.” Understandable fears and feelings were characterised as “behaviour” to be managed, rather than distress to be understood and compassionately supported. The lady in the next room spent her waking hours keening thinly. Staff parked her in a communal lounge; she leapt every time I went in to use the fridge. I watched a nurse lean over her wheelchair and shout at the crown of her head (always, always, with this. Why don’t they see how this frightens them?) “If you don’t like that book, pick up another one!”
A barely comprehensible accent phoned wanting consent to involve an acute mental health service, claiming there had been complaints from other residents’ families about Mum calling out, though it rarely prompted staff to close her door.
I demanded, “What’s the effect of consent? What am I consenting to?”
“It’s a form…”
“Consent is not a form. What am I consenting to?”
“It’s a form…”
“Put someone on the phone capable of making sense.”
“It’s a form…”
There was no counselling, no support to help these poor frightened souls adjust; they were left to scream or cry it out on their own. A nurse asserted it takes two to three months to get used to being in a facility. How many don’t make it that far?
<><><>
“Now, you’ve been marvellous – so loving and kind.”
I thought of anosognosia, how I’d railed against what I thought was denial. “I don’t know, Mum. I wasn’t always as patient with you as I should have been or as you deserved.”
“Everyone loses patience sometimes, silly billy. Now, I know things won’t be quite the same as before, but we can do still lots together, watch movies, have meals…”
“That’s right.”
“We still have plenty of good times ahead.”
“You’re my beautiful brave girl.”
“You’re my beautiful brave girl… I don’t feel very brave… but… but… instead of getting hysterical, I have to remember all the nice times we’ve had, so when I’m trying to go to sleep alone at night, maybe I won’t be so frightened.”
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So it is on the other end of life.
Seventy years after psychoanalysts John Bowlby and James Robertson bravely championed traumatised children against a hostile medical community, is it too much to expect today’s medical staff to recognise the early experiences of the ageing generations they treat? As they return to vulnerability and dependence, how the impact of early separation and hospitalisation in a time when children were little understood might still be felt?
Watching the despairing little girl, Laura, in a clip from Robertson’s seminal film, A two year old goes to hospital was very like watching my eighty year old mother wake in an aged care facility. Stunned, she seemed to question how she landed in this place before pleading to be with Susan. Comments following the clip from people who experienced early separation/hospitalisation in the 1940s and 50s suggest Mum wasn’t alone in being scarred for life.
In a 1942 paper titled, Loneliness in Infants, paediatrician Harry Bakwin asked, “Why do infants in hospital fail to gain weight when given a diet they would thrive on at home? Why do they sleep less, smile rarely, hardly babble? Why don’t they respond to a smile or a coo? Why do they seem so listless and unhappy? Why don’t they seem to take pleasure in eating? Why do infections that last a day or two at home persist for months on end in the ward?
“When Bakwin took over the paediatric unit at Bellevue, he took down the old signs emphasizing antisepsis (‘Wash your hands twice before entering this ward’) and put up new ones: ‘Do not enter this nursery without picking up a baby.’ Infection rates went down.”
“Bakwin similarly found the symptoms of hospitalism began to disappear when the baby was placed in a good home, often with a rapidity he described as ‘amazing.’”
In 1947, psychoanalyst René Spitz found prison babies – the children of delinquent mothers pregnant when sentenced – thrived, while infants in foundling homes deprived of their mothers deteriorated catastrophically. Spitz made a film called Grief: A Peril in Infancy. It concluded with a title card: “The cure: Give mother back to baby.”
I tried to bring Kay home. As they relied on more psychotropic drugs to keep her quiet, she was awake less, eating and drinking even less, frequently complaining of AG-ON-EE!
Not knowing how to provide catheter care, I attempted to establish what nursing support was available.
Miss Passive Aggressive: “I have no idea!”
My Aged Care: “Bring her home, we’ll do another assessment. Then you can get services.”
“She has a catheter. I need to know what nursing services I can access before I bring her home.” After an hour, I had a referral and voucher code.
Calling the district nursing service, I copped Matron Imperious again. “What if you make things worse? What if she pulls out the catheter or gets a bed sore?”
“That’s why I need to know what nursing services I can have!”
Incredibly, with my anguished mother clearly audible on my end of the phone, Matron Imperious held forth on “a mythical being called SWEP” and how we’d have to pay for our own catheters, while I, straining my ears for the information I needed, wondered how she found time to talk drivel.
“I don’t think you understand how hard it is to be a caregiver,” she said.
After three years, of course I fucking didn’t.
“How are you going to shower her?”
I got growly. “The same way I always showered her.”
“You’ll need to get permission from the local doctor, see if they’ll take her back.”
“I’m sorry?”
“What sort of catheter does she have?”
“I don’t know.”
“Well I need to know. You’ll have to ask permission from the nursing home to take her out. Ask for a few days’ leave to see if you can cope.”
My heart sank. There would be no help for us. I’d felt reasonably confident I could explain to Mum her return home was only until a place became available across the road, but to remove a person with dementia from a distressing environment only to return them there – this would be cruel.
<><><>
There was nothing approaching rocket science in what that facility needed to do to support my mother’s comfort and encourage her to eat. But all was conveniently attributed to the inevitable progress of cognitive decline – in a person who had never been diagnosed or seen by a geriatrician. Kay did not have end stage dementia, characterised by, among other symptoms, incontinence and limited communication, with speech confined to single words or phrases. Though she forgot the names of things, Kay spoke in full sentences. I was amazed one day to find her tackling a magazine word puzzle, though obviously not as successfully as once. In hospital the month before, my glorious little idiot had decided drinking orange lemonade would make us speak like rich people, holding forth in her best imagined toffy accent. More recently, watching the Dr. Phil show on television she’d declared, “Dr. Phil is an idiot.”
“You might be onto something there, Mum.”
These are not conversations one has with a person suffering end stage dementia. She stopped walking entirely upon being hospitalised but I’m not convinced this was due to dementia and no-one else is entitled to be, given her fear of falling and I believe, undiagnosed osteoporosis, extensive arthritis, not to mention a fool doctor saying if she fell and broke her prosthetic hip, it would likely be inoperable.
<><><>
On her birthday, trying to say life wasn’t over yet, that birthdays would still bring sparkly things, I gave Kay a splendid pair of earrings.
“Oh they’re so beautiful. I’ve never seen anything like those.” Mum read her birthday card, illustrated by a glittering cake. “That’s your best one yet! But… I don’t know about the wonderful mum part.”
“I wouldn’t have traded you for the world.”
“And I wouldn’t have traded you. Why would I trade a daughter who does such beautiful things?” She admired her earrings again. “They make me feel like I was someone!”
“You still are someone, Mum.”
She pleaded to stay with me overnight, then begged nurses to bring another bed into her room so I could stay with her. I began to sob; Mum tried to soothe me. “Don’t cry my beautiful darling.”
Kay, who had never been religious, turned to God. “God will help me! I love God! And I love Susan! Assistance from above… please!” As she sang Jesus Loves Me, I joined in. I thought we’d sing together, but she listened to me sing, then took her turn.
A nurse gave her a jolly good lecture. “At least your daughter is in the same country!” Nurse’s child was being raised by relatives in another country. “Imagine how hard it is for me! Susan has to work. You get used!”
It was the last time Mum entreated understanding, the last time I saw her anything like herself. As I left she regarded me with teary eyes, saying what she was expected to say, what everyone kept telling her she must feel: “Tomorrow.”
<><><>
I’d found Kay crying. Staff had used a sling to shower her. “She put me on a swing right up in the sky! And God didn’t help!”
Staff checking her catheter bag remarked it was empty; Mum hadn’t taken fluids the previous night.
I couldn’t persuade her to take lemonade; she didn’t calm when I stroked her hand, wouldn’t stop shouting when I asked her to. Unknown to me I was finally looking at delirium but having been told this was “behavioural,” after a few hours I got fed up with her shouting and left.
“Fuck off then,” she said. This was a first.
Saturday I found her parked asleep in the lounge of another wing, in front of a television, dressed in clothes that were too hot. Rousing, she writhed and complained of burning. There were no fluids nearby. I asked for a sip cup from staff but couldn’t persuade her to drink. Again, I got fed up with her agitation and left. I will rightly be forever haunted by how politely she responded when I said, “I’m leaving, Mum.”
“Good-bye.”
Sunday – Mother’s Day – I heard her roaring through the concrete brick wall. A terrible sight, I thought she’d descended completely into madness. Her detached catheter bag lay on the floor across the room; the bedding bore testament to her thrashing. “We made that earlier,” said a nurse with fingers in her ears. One of the snowballs I’d taken in on Friday had been thrown across the room, a bite still in Mum’s mouth as she wailed and thrashed. I couldn’t persuade her to drink. In my bag there was a box of chocolates and necklace matching her birthday earrings she never got to see.
She begged me to get her to the street.
I balled a fist to my head. “I don’t know what more you expect of me, Mum. I’ve got nothing left to give. I’m trying to keep you out of the psych unit until I can get you transferred.”
“Susan? Are you still in the room?”
“I’m here, Mum.”
The facility called after I left. “She’s quieter today.”
“Well I just left her and she was roaring blue murder.”
“What?”
Supposedly a doctor had seen her that morning; they wanted permission to administer Clonazepam. For a urinary tract infection, instead of antibiotics, they gave her a sedative. The state she was in, a remotely qualified doctor should have recognised delirium and investigated: catheters and urinary tract infection go hand in hand.
Monday, they claimed she had one small bedsore. The down pillow I supplied had been replaced with one too high and firm which would have caused considerable pain. She kept shouting “twenty.”
Tuesday I sat in the corridor quaking while they bathed her and she roared. Hurrying to get to Mum, the week before I’d taken a bad spill. Hands splayed on concrete, I’d broken a finger in my right hand, my left arm bruising halfway to the elbow. Mum had gently requested I be more careful. That Mum was unrecognisable now. She seized my injured arm hard enough to make me cry while a PCA, soon to be of we–don’t–test–urine–for–infection–fame, prised her fingers away.
Wednesday afternoon a mental health nursed phoned. “Have you seen her recently?”
“Yes. I’m there every day.”
“Really? Riiiiight. You can be there for the assessment in the morning if you like.”
Some instinct made me take her private health insurance membership card. Untouched breakfast on the other side of the hot room, she was just waking up. “I’m sore!” The bad pillow was still beneath her though I’d requested the return of her own.
“I’m trying to get you help, Mum.”
An hour later, staff jumped at the sight of me. “She’s just woken up!”
They mixed a crushed pill with yoghurt that had been sitting in a hot room for at least an hour and tried to give it to her. The sip cup beside her bed was the same from yesterday, the filthy mouthpiece crusted brown.
Clutching my arm, the mother I’d walked out on for a week said a single word: “Stay.”
<><><>
Suddenly all was damage control. The smiling CEO asked if I wanted a doctor called. “Yes, I want a bloody doctor!”
Virtual Emergency Doctor: “Eating and drinking less is a natural part of cognitive decline. If you like we can get in what we call resi-care tomorrow to try a course of antibiotics, but as there’s no sign of infection….”
“Yes there is. I just heard staff changing her catheter bag say she definitely has an infection.”
“What? I wasn’t told that. Can I speak to the nurse?”
Nurse had tossed the phone at me then left. I searched out the call buzzer lodged between two pieces of furniture, yanking it free with difficulty. Nothing happened when I pressed.
With an ambulance on the way, there was a sudden flurry of care activity. CEO, smiling: “Susan, did you authorise hospital transport on the advanced care directive?”
“What? You tell me – did I?”
“Well I don’t know.” She made a great show of producing another advanced care directive, which called Kay “Susan,” to authorise the hospital transfer that should have happened days before.
“This is not an emergency.” Enter a very pissed off paramedic. Looking pointedly at me: “You’re supposed to be educating families this isn’t an emergency. I told you last time.”
“They’re not doing anything to help her! She needs to go to hospital!”
“If you’re not happy with the care here, what’s your exit plan?”
“I’ve got her name down elsewhere! They’ve no place available!”
Regarding my tiny, suffering mum, I questioned whether I was strong enough to lift her from the bed and take her to hospital. But would they let us in? Paramedic only relented when I insisted Mum could go private.
A nurse shrieked at paramedics. “The daughter changed her mind! The daughter and emergency doctor changed their mind!”
Paramedic: “I want you to test her urine for infection.”
Staff: “We don’t do that here.”
Paramedic: “Get a specimen vial. I want you to test for infection.”
“We don’t do that here.”
Paramedic tested it herself. “No surprise there. She definitely has an infection. They’re supposed to test regularly.”
Discovering a garden area on the way out, I wondered how much Mum may have settled if ever she’d been taken there. One day she’d begged me to take her outside, somewhere private, where we could be alone together. I didn’t know there was any place to go.
Paramedic still remembered the security code from last time.
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Even as government aged care staff abuse residents, vilifying families who dare defend their loved ones against sexual assault, the Aged Care Quality and Safety Commission website seriously claims, “Service providers can’t punish anyone in their care for making a complaint”. While the Aged Care Quality and Safety Commission re-accredits facilities previously found to have “placed the safety, health, and wellbeing of consumers of the service at serious risk," the Australian Government, without irony, advertises “violence against women begins with disrespect.”
It takes a special kind of hubris – hubris peculiar to bureaucrats and politicians – to contend aged care standards “ensure that everyone using aged care is treated with dignity and respect” as though enforcement and punishment are unnecessary to compliance.
It takes a special kind of callous to telephone a daughter by a hospital bedside – in full knowledge of the dire state of my mother’s health – because a bureaucrat prioritises their demands over the care of a dying woman, her torment unmistakably audible.
The only reason I’d contacted the Aged Care Quality and Safety Commission while we were in the throes of our own drama was concern for other residents. The only reason my phone was turned on was so hospital doctors could reach me. The Aged Care Quality and Safety Commission rode roughshod over my nominated email contact. “I know this isn’t a good time but I need to talk to you.” In fact she wanted to lecture me on what I was or wasn’t allowed to complain about, telling me to take my complaints about My Aged Care outside. When incensed, I objected, she demanded, “You tell me exactly what time I can call back tomorrow.”
“TOMORROW IS GOING TO BE THE SAME.”
The Aged Care Quality and Safety Commission’s correspondence has repeatedly expressed a misapprehended authority to direct my co-operation, demanding I meet their reporting deadlines. To say the least, their correspondence has been consistently insensitive, giving me the hurry up as they wished to close the complaint. I gave up trying to deal with the Aged Care Quality and Safety Commission when, knowing the nature of my mother’s death, they sent an email saying, “Hope you are well.” Actually, I was mired in severe depression, trying to find reasons not to kill myself.
The mental health mob too, called me at Mum’s hospital bedside. “I know this isn’t a good time but we need to follow up for our records.” While my mother needed me I had to listen to several minutes of a heroic account of the mental health nurse riding to the rescue when he had in fact delayed escalating to his doctor-boss to engage me in unwelcome conversation about the frequency of my visits.
If any of these people were genuinely concerned for me, they would have looked after my mother.
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We had been turned away so often, I was afraid to ask, but in the presence of kind people, I found my voice. “Could someone help me, please? Please? I don’t want her going back to that place.”
Dropping to his knees to meet my eye, Dr. Jason told me his own nursing home story: his grandmother was knocked about until family complained to authorities and had her moved. “She went on for another three years. There’s tricks for getting fluids into people with dementia, better places for her. We have social workers here. They’ll help you.”
When he called her Kay, though delirious, Mum stopped writhing to listen.
Insisting on making me tea – the best of my life – Dr. Jason sat shoulder to shoulder when the blood results came back. The bad news: toxins build up, kidneys resume functioning, flood of toxins is released. The presence of potassium was reason to hope. Tomorrow she would see a kidney doctor. Every time I thanked him, Dr. Jason said, “Don’t thank me.”
When that beautiful young man called in the morning – on his day off – to ask how I was, he’d already lodged a complaint with the Aged Care Quality and Safety Commission and marked Mum’s file: she was not to be returned to that place. “They can’t send her there without your consent.” News to me.
Imagining all the good things flowing into my mother’s little self, how I loved watching those fluids and antibiotics drip. When the machine sounded, I trotted to the nurse’s station to let them know the bag had emptied, praying as they rigged up a new one.
Kay had suffered a urinary tract infection during her last hospital stay, responding well to antibiotics. But this time, at eighty-one, she’d languished with untreated infection for a week, after two months of malnourishment. I was camped at a motel near the hospital when Doctor Kidneys called: Mum wasn’t responding to antibiotics. He would keep trying, there was a possibility she might turn around on her own, but how aggressively did I want him to treat this?
It hurt to say, “Keep her comfortable.”
Doctor Palliative was a good bloke, he said, a bloke he really trusted.
The head nurse had braided Mum’s hair to prevent knots as she writhed. “If she doesn’t settle in a minute, I’ll give her morphine.”
Ah. Morphine. So that’s it, then.
Still I hoped. Early that week I thought she’d turned a corner. I brought my face close to hers. She smiled a funny smile favouring one side of her face. Her eyes seemed too dark… and was her face swollen? Her hands were.
Doctor Palliative asked if I thought she knew me.
“Oh she knows me.” She’d hit me up with, I love you soon as I walked in. “Ask her if she wants a kiss – she’ll answer you all right. Do you want a kiss, Mum?”
She nodded. “Yes I do.”
Kiss kiss kiss. “There were a couple of bonus kisses in there, Mum.”
“I asked if we could do anything to help her. She said, ‘A really big ice-cream.’”
“The woman’s a demon for ice-creams! Aren’t you, Mum? Do you want a kiss?”
“Yes, I do.”
I stroked her hand; she gripped my index finger.
“Hey, Mum? Do you remember the goldfish?” Nodding, another lopsided smile.
Our family photos show Kay holding my young cats up to the fish tank to be entertained. One afternoon I returned from school to two kittens in hiding and a nearly empty fish tank. Only one fish had survived their fascination. Belting to the pet shop, I meant to replace the fallen before Mum got home but they had no goldfish, only one as far removed from gold as it’s possible to be. Other than desperation, I don’t know what made me buy that black fish.
To make matters worse, it turned out to be a cannibal. Next morning we rose to a scene from Jaws, the sole survivor of the kittens’ fishing expedition severed down the middle, Sharky darting in gracefully to nibble the frayed edges of his torso.
Nodding enthusiastically, Mum managed something like a guffaw.
In our poor times, we often said, “One day we’ll laugh about this.” You’d taken a liking to padlock bracelets so one Saturday I walked to the jewellers to ask about the price, dreaming about the time when I might afford to give you one. Then I bought the makings of dinner. When the butcher charged me twenty dollars for lamb chops, I nearly died, but too embarrassed to admit I couldn’t afford them, I came home and confessed their price.
You cried, “That’s too good for chops and veg! We’ll have to make something special!” Soon you had the lamb marinating; that Saturday night you and I kicked back, feasting on souvlakis like the world was our oyster.
Trying to get you to talk in the hospital, I chattered on about the padlock bracelet I eventually gave you, saying I couldn’t recall whether I bought it at Malvern –
“Uh uh.”
or Camberwell –
“Uh huh.”
Truthfully, I did remember, but I remember those souvlakis even more, how you turned a day that began with humiliation into a celebration.
A young male nurse in Emergency had removed her bracelet with painstaking care; Mum watched me hold it up, now clasped to my own wrist.
I asked if she remembered a certain birthday.
There were no presents to be had so you bought me instant scratch tickets and I had a small win, enough to buy some birthday beer. My birthday fell on Easter that year, a gloriously sunny autumn Saturday. We’d started down that bloody hill when you noticed how my hair changed colour in the sunlight. Touching your fingers to my hair, you described the blondes and reds, saying they were beautiful. Such a simple moment, but I’ve never forgotten how it felt, when we had little else, just to be together in the sunshine.
“It’s one of my favourite memories, Mum.”
After three hours Kay released her grip on my finger. An odd sensation swamped me… it didn’t feel like she’d fallen asleep. It didn’t occur to me she’d just let go.
One day there were no more bags of antibiotics or intravenous fluids. No-one but Kay told me what that meant. “I’m angry!”
“Hungry, Mum? That’s good.”
“No! I’m angry. I’m dying!” Or perhaps, “I’m angry I’m dying.”
When I tried to soothe her, she yelled, “I have to go back to sleep!” I knew I was no longer a comfort, just someone else bothering her. Kay was on the morphine mile. That mile we all walk alone.
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The body charged with preventing this barbarism, the Aged Care Quality and Safety Commission, couches its failures in vainglorious terms: “We’re always looking to improve!” Its complaint response, ostensibly enquiring after my satisfaction, is ripe with directive: “keeping in mind we are unable to undo past events and can only focus on future improvements for the current residents.”
Their intake officer reworded my first complaint omitting several issues, so I wrote a second, idiot-proof version. She reworded that too, asserting, when I objected, she was following the government style guide. I demanded to know why she had omitted their failure to test for infection.
“They were testing her urine.”
Actually, they weren’t. (Just once, three days after she transferred from hospital.)
The Aged Care Quality and Safety Commission’s investigation revealed a litany of failures: the facility did not provide adequate nutrition and hydration, did not chart food and fluid intake, took a poor approach to pain management, “which impacted on her activities of daily living, functional ability, sleep and appetite,” did not follow its own pressure management procedures. An investigation gave lie to the denial staff left food in rooms. They didn’t even give her a clean cup daily to drink from.
Three days before Kay’s hospitalisation, “documentation states your mother’s urine was of ‘a dark colour and foul smelling,’ suggestive of severe dehydration and a urine infection. However, there is no information to support staff called a doctor to escalate this concern or perform a urinalysis test to check for possible signs of an infection.” There was no record of her oral input or output over the previous four days.
A fact curiously omitted from the Aged Care Quality and Safety Commission’s finalisation letter, two days later kidney failure was noted. The facility neither called a doctor or told me Mum was sick. Their answer to delirium: transfer to a room with thicker walls to soak up her screams.
On Kay’s advance care directive I had checked:
“I want to be transferred to an acute hospital for medical support such as antibiotics, fluids and medications.”
“I want to be transferred to an acute hospital for life prolonging measures such as breathing machine (ventilator), kidney machine (dialysis), feeding tube or surgery.”
– adding, If realistic, to the former and to the latter, Depending on situation. Will seek advice, spelling out elsewhere: Catherine would not want futile or desperate interventions unlikely to succeed, particularly if these subjected her to distress, trauma or pain. She would prioritise pain relief and comfort over longevity. She would not want to be kept alive at any cost.
Aged Care Quality and Safety Commission: “The service acknowledged some employees do not speak English as their first language, however noted these staff are qualified to work within their scope of practice.” But then, “The service explained staff were unclear of the directives (…)”
Yet no-one sought clarification. I had attempted to address an unknown situation. In what circumstances would this come into effect? I imagined it would apply to approaching death, not viably treatable illness. Even if one accepts confusion about affirmatively checked hospital transfer, it doesn’t explain why they didn’t seek medical treatment in-house or why they didn’t tell me she was sick.
To, “I consent to the following treatment” I further specified:
Catherine would want treatments that might meaningfully extend her life, improve quality of life, address illness, reduce pain and improve comfort.
It’s hard to see how that doesn’t cover antibiotics for infection. I do not accept any assertion in the circumstances it would be my right – or the right of anyone else – to deny another person such straightforward treatment.
The Aged Care Quality and Safety Commission asserts Kay’s directive states she did not want to be transferred to a hospice. If it does, it shouldn’t, because on my handwritten copy, that section is blank.
“We consider it is possible staff may have misread this directive and thought your mother did not want hospital transfer.” Staff can’t distinguish between “hospice” and “hospital” but no problem there, and hey, if in doubt whether a person wants to live, just say no. The Aged Care Quality and Safety Commission’s review of my mother’s care records “showed minimal documentation by staff with multiple instances of grammatical errors, suggestive of poor English proficiency.” Yet while companies which make misleading claims about bread are fined 2.5 million dollars, aged care providers who mispresent their capacity to care for actual people suffer no penalty.
Seven days after Kay’s hospital transfer, in what the Aged Care Quality and Safety Commission cutely calls a “retrospective progress note,” the staffer who stood shouting “the daughter changed her mind” recorded, “ACP (advanced care plan) is not for hospital transfer but NOK (next of kin) Susan changed it to hospital transfer.” Her hysterics when an ambulance was called – why she felt the need to shout this at paramedics – hasn’t excited the Aged Care Quality and Safety Commission’s interest. Neither has the display of staff ‘discovering’ an infection in my presence which had been observed days before.
On May 10th, Kay’s first day of delirium, the facility doctor clamed in his notes that an acute mental health team and Dementia Australia had assessed Kay who was “looking good.” The Aged Care Quality and Safety Commission’s report claims Doctor regularly consulted with me. On all fronts – no. Dementia Australia doesn’t deal with aged care facilities; Dementia Support Australia, which does, confirmed Mum was never assessed. Mum wasn’t seen by the mental health service until May 16th, the day of her hospitalisation. The photo on Kay’s advanced care directive reveals a woman so gaunt that by no stretch of the imagination could she be described as looking good.
With breathtaking insensitivity, the Aged Care Quality and Safety Commission’s finalisation letter states to a grieving daughter no less than fourteen times:
“Your mother has since died and therefore the concern is no longer ongoing.”
Not since – because.
Typifying the callousness of the Aged Care Quality and Safety Commission’s correspondence: “I look forward to resolving your complaint.” Glancing at my mother’s urn, I wondered how they meant to swing that.
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Kay suffered eighteen days of delirium. Sometimes exclaiming, “Too young!” I thought she was recalling her favourite Hollies song, Too Young to be Married. She counted aloud feverishly. No-one knew why. A nurse asked if she’d been a teacher.
“No.”
“I wonder why she’s counting then? We’ve been writing down numbers, trying to get enough for a lottery ticket.”
On Friday I watched Kay wake to another day’s torment. In her hair was an elastic from the hated facility I meant to replace with my own, which I seemed to have lost. Savaging myself for another failure, I sobbed as Mum writhed. “I may as well leave, Mum, for all the good I am to you.”
At home, my arms flailed in a remembered childhood gesture: the helpless, wounded infant. I thought I’d finally got Mum to a place of care, but knowing her predicament was due to negligence, nurses elected to tell me how they made sport of her delirium.
Walking through the house I chatted with myself about suicide, and boy, wasn’t I chipper.
On Saturday, with only two days remaining to her life, I, unable to face another moment of indifference or cruelty, left my mother alone in hospital. Sitting on the couch in a stupor, I imagined nurses leaning over her in the dark. “Give us another number!”
Returning home on a cold dark bus after seeing you for the last time, I caught myself holding my head on an odd angle. I realised over the past couple of months, I’ve spent so much time trying to see your face through the bars of a hospital bed or trying to make it easier for you to see mine, my head now seems to have a permanent lean that refuses to be corrected. I guess it’s a measure of how much I still want to be looking at you.
I last saw Kay on a Sunday, wracked by silent screams. Gently, I thumbed a tear from her cheek. A nurse seemingly desperate for my attention cried, “My darling! I’ll get you a tissue, my darling!” Watching Nurse scratch at my mother’s face with a rough paper towel, I wondered why she couldn’t have left Mum to the small comfort of her daughter’s touch.
Mum coughed; it was obviously painful. I thought: pneumonia. But no-one told me.
At home I booked a motel for the next week and packed a bag; I could only be with her when the time came. But at 3.30am, the phone was ringing. The phone was ringing. The phone was ringing.
“And Susan, it was peaceful.”
Peaceful? My hearing fuzzy, I roared, “What? WHAT?”
There was a surge of unrecognised emotion; I guess you only lose your mother once. A feeling so fierce I thought it would kill me yielded to another akin to peace. In the morning, I recognised it was relief: I no longer had to try to protect my mother from the people who were supposed to help her.
You and I walked many miles together and I’m grateful for every one, perhaps the hard times most of all. I was privileged to hold my hand in yours and privileged to hold your hand in mine.
Sixteen days after Kay’s funeral, Prime Minister Anthony Albanese tearfully revealed a terrorist threat against his family. That winter, the Australian Government advertised “no excuse for elder abuse” on television.
Are you safe at home? Tell me, Kay, were you safe at home?
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Reply received 26/03/25
"Referred to the Department of Health and Aged Care"
