by Amal Awad
‘Good therapists tend to believe that there’s an essence of who you really are that never gets damaged no matter how much trauma or bad health … which can be trauma, too … There seems to be this part of you that is always protected. And actually in protecting that part, sometimes you can be destructive to other people.’
Charlotte is comfortable not quite belonging in any one tribe, but recognises that she too behaves in a certain way to keep social connections. She likes socialising with like-minded people. ‘I still think sometimes how lovely it would be if I were sharing my life with a deeply loving man. I’m heterosexual. But I actually think it’s impossible. I’m not sure,’ she laughs. ‘When I’m with married people, I think, why do they put up with all this, even though they’re presenting as reasonably happily married.’
Friday
The renal ward waiting room on a day of tests. Dad falls asleep on the chair, close to my mother and me. He won’t take a bed. I think he likes having us around. I don’t think he’s comfortable, but we’re close, he’s at peace, and that makes me feel better.
Infomercials light up a flat-screen TV mounted on the wall by the reception desk. Karen Moregold prescribes astrological forecasts. I think of Lindel. She told me she’d seen two major illnesses in her own chart when she was in her mid-forties, not that she’d understood it at the time. ‘Astrology is a drip-feed thing. You think you know it, but you can’t necessarily take in the deeper meaning straight away, especially for yourself. But you can help others.’ I think of how little I would like to know what life could have in store for me one day. Tempered serenity is all I have. I don’t need to disrupt it with inevitability.
The waiting room is full of humorous moments. When Dad goes back in to see the nurses, it’s Mum and me and a couple of regulars. Sometimes a familiar face passes us by and we nod in acknowledgment, like we belong to the same team now. Today a full-blown domestic unfolds as a woman zips around in a wheelchair yelling into her phone. The man beside me has a face mask on (he thinks he may have a cold), but he wonders out loud to me ‘Why can’t she take it outside?’ What I can deduce from the shouting is that inside the ward her husband is undergoing dialysis, but she’s mad as hell about something happening outside the ward. The collective energy of the room shifts. We’re all drawn in. We’re reading, sure, but her tone and decibel level are bound to pull an audience. She winds up and heads back into the ward, staring down the room. As she whizzes past us, she throws the man with a face mask a dirty look. I hold back laughter. Life can be so absurd.
There’s temporary escape between the pokes and prods. We steal a moment in the sun at Centennial Park, buy coffee from a vintage model cart. Mum takes photos of the lake. Then we return to the hospital for a visit from the dietician. Her attempts to offer Dad advice become comical; Mum interjects before she can finish a sentence.
Dad does need the diet advice. He sometimes lacks an appetite. I find myself urging him to eat. One time he gave in, eating a sandwich then declaring, ‘I ate it for you. I didn’t want it.’
He used to be the type to eat the garnish off the plate.
But it’s really Mum who plays food cop. I call it the Battle of the Capsicum, the tense to-and-fro that is also, quite frankly, amusing to watch. Mealtimes are all about negotiation. Mum monitoring Dad’s funny eating habits. At times, he seems to get full just looking at his plate. Mum will harass him until he’s eaten enough. Dad will resist, but Mum’s a warrior: she knows that eventually Dad will go for the slice of capsicum on her plate that she’s been haranguing him to eat. Meanwhile, Mum’s plate sits away from her, towards the middle of the table, like she’s waiting for someone else to finish her food. Some days she’s better about enjoying her food. I wonder why she does this, but I suppose Mum’s nature means she’s not happy unless she’s feeding people.
When we’re finished with the dietician, we’re done for the day. As we leave, Dad calls out to the nurse, almost cheekily, ‘See you next year!’ I don’t know that he’s used to the hospital visits, but he seems less surprised by them now.
Moods uplifted because we’re done, it’s quieting walking though the renal ward, to see all these people in beds, immobile, not resistant. Some of them hollow-eyed, defeated. A three-times-a-week, five-hours-long reminder of your body’s challenges. A farm of cords and whirring machines transmitting life. Keeping them alive.
I recognise some of them by now. I nod a hello to a sweet Arab man I briefly spoke to during Dad’s hospital dialysis stint a month earlier. ‘I’ve been misdiagnosed,’ he told me knowingly, before launching into a conspiracy theory and his plans to travel overseas. ‘I can do dialysis there.’
Maybe I was tired, maybe I was amused, but I called him on it. ‘But you just said you don’t think you have kidney failure.’
I smiled as he shrugged. I guess we just need something to hold on to sometimes.
‘I think the hardest thing for the patients, particularly our patients and also the patients in haemodialysis, is that it’s so relentless, like there’s no escape,’ says Candace*, who’s registered as a nurse in peritoneal dialysis, a type of fluid swap when the blood is filtered and cleaned not through an outside dialyser but in the body. ‘It’s not an option not to come in for dialysis. That’s really hard, particularly for some young ones that we’ve had. It’s a big disruption in their life … The challenge is developing a good rapport so that they want to take your advice. Because they trust your opinion, that you wouldn’t suggest it if it wasn’t appropriate.’
Diane*, a clinical nurse for peritoneal dialysis, identifies the difference between the two types of patients they see in the renal ward: the ones who come in three times a week for the five-hour-long dialysis treatment, and the home patients (peritoneal or machine). For the regulars at the ward, the frequency is a burden. ‘When they leave, they’re quite exhausted.’
Some patients at home use a dialysis machine that runs all night; others, like my father, undertake peritoneal dialysis, which gets done four times a day. You’re dealing with a bag of solution, a catheter sticking out of your belly, not a drop of blood to be seen. Later Dad will switch to the machine that runs overnight.
Home patients are responsible for their own treatment and management. ‘So, different ends of the spectrum, I guess. A lot of the patients that do home dialysis get very sick of doing it themselves.’
Candace and Diane say that persistence and developing a good rapport pay off; they have seen improvements in patients. They can refer patients to an appropriate counsellor – if, for example, they can’t come to terms with the treatment. Young patients on dialysis may experience difficulties differently from older patients. ‘I guess with the younger ones, it’s a lot of body image things, difficulty with partners, and how they’re going to deal with it, as well. Whereas if you get somebody that’s older, who’s maybe been in a relationship for much longer, it’s different,’ says Diane. ‘Someone older – they’ve got this assumed support person, and there’s never any debate that their husband or wife is going to be beside them,’ says Candace. ‘Whereas I think younger people … there’s so much guilt tied up in it. That you’re bringing that other person down to your dialysis every day.’
4.
THE MEDICINE OF LIFE
‘The giants of geriatric medicine’
Being ill is not normal in old age, says Professor Richard Lindley.
‘I see some people who say to me, “Doctor, you shouldn’t be bothering with me, you should concentrate on the younger people.” And I have the pleasure of telling them, “I’m only employed to look after people like you. I’m a doctor for older people and I think we can help.” So I think there needs to be advocacy that if you’re getting sick and you’re old, you should get medical attention because it could be things that we could improve – that’s the whole point of geriatric medicine. Diagnose; treat the treatable.’
There are a few key questions you want to know of your parents, he says. ‘What’s more i
mportant: is it curative treatment, is it palliative treatment? Is it comfort care or do they really, really want to get rid of that tumour and have all the ghastly chemo and injection therapy known to man? Or would they rather just be kept comfortable and let nature take its course?’
There are also key questions for the doctors: how is this treatment going to help? Are all these tablets really necessary? ‘I think that’s a great question to ask, because it can concentrate the mind. Some people end up on tablets because they were started on them a few years ago and no one’s ever stopped them.’
It’s also important for families to check in with elderly family members about their wishes for the future. That is, advanced-care planning. Consider some ‘what if’ scenarios, Professor Lindley suggests. ‘“Mum, what if your breathing got so bad you ended up in the intensive care unit on a ventilator? Is that something you’d want?” And you might find they’d say, “Of course. But if it was something they couldn’t treat, get me off the ventilator quickly.” Some people are very surprising. They say, “Oh heaven’s sakes, no, I don’t want any tube treatment. I don’t want to be kept alive on a machine. If God wants to take me, I’m ready.”’
Lesley, a former nurse, recounts how her mother had rheumatic fever when she was about seven, a condition that is known to damage the mitral valve in your heart. ‘When Mum’s heart specialist said to her, “Well, we can do a mitral valve replacement,” Mum’s response was, “For heaven’s sake, you have to die of something.” … And it’s true.’
Professor Lindley argues that, as they age, we don’t know our parents’ wishes well enough. ‘And these conversations are difficult, but you can bring them up at appropriate times. Like older parents often have stories about their friends: “The neighbour died the other day; she had a terrible time in hospital.” And that might be an opportunity to bring up a discussion. “Mum, I’ve worried that might happen to you. If you got that sick, what would you want in hospital? Would you want them to resuscitate you? Would you want to go on a ventilator? What would you want, because you won’t be able to tell me when the time comes.” And that could be a way of starting a conversation.’
Professor Lindley appreciates how difficult these conversations can be for all involved. I think of the medical professional who told me that he’s broached the subject with his mother in the past with mixed results. ‘The first conversation went very well – she surprised me by saying she wanted everything. When I tried to reaffirm that this year, I had an adverse reaction and we changed the subject.’
He put this down to a few scares: ‘It became all too difficult. But at least I can have a conversation with the intensive care unit that the last time my mother gave me guidance she did want everything done. And that I think’s very helpful.’
In terms of how Australia is dealing with its ageing population and treatment of their ailments, Professor Lindley says, ‘It’s complicated. That’s the first thing.’ ‘At medical school, you’re taught about the classical medical problems. Let’s think of a heart attack. So you’re taught classical heart-attack people get central crushing chest pain, radiating down the left arm; they get grey, clammy, sweaty; they feel a sense of impending doom. So you know if you see people like this, you immediately do an ECG, check their blood pressure, get them to the coronary care unit, give them emergency treatment. And there’s thousands and thousands of conditions that have a classical presentation.
‘The problem when you get old and frail is that the heart attack might show itself as someone falling over, or one day they can’t get out of bed. And unfortunately there are hundreds and hundreds of reasons for falling over or not getting out of bed, and in a younger person it wouldn’t possibly be a heart attack – or very rarely – but in an old person it could be, because they have atypical presentation.’
Professor Lindley invokes Occam’s razor, the famous problem-solving principle of medicine. ‘What is the simplest explanation that can account for all the patient’s symptoms? Google is very good with Occam’s razor. If you put in the symptoms, it will tell you.’
I express surprise. Isn’t Dr Google responsible for a million brain tumours? Doesn’t plugging in a bunch of symptoms always land on cancer or other frightening conditions?
‘It will tell you,’ he insists. ‘However, if you’re old and frail, Occam’s razor fails spectacularly, because you’ve got an infinite number of ways people have degenerated; an infinite number of combinations of diseases; an infinite number of combinations of medications. So they’ve got huge complexity. Now, the reason I start with that preamble is that medicine has got so complicated that in every speciality –like haematology, gastroenterology, neurology – you need super specialists who understand the diseases in that system, the modern treatments, and the huge complexity that’s underlying this now with our knowledge of genes, proteomics, genomics.
‘If I get a melanoma, I don’t want to see a geriatrician, I want to see a melanoma-specialised oncologist … They’ve got these fantastic new treatments for melanoma, and it’s complicated. The problem is that only about half of emergency or important medicine is in that simple problem–solution specialist.’
Professor Lindley says, ‘With every medical success, we add to the queue of the frail elderly.’
People with melanoma are a good example. ‘Australians were dying of melanoma in middle age, never getting old. There’s now these spectacular treatments, which mean people are going to get older, and they’re going to be frailer – because the treatments are not without their problems. So twenty years ago we never saw the survivors of melanoma. Now we see them and they’re old and frail, and they’re going to have different problems.’
Professor Lindley says we need the super specialists but we also need an army of geriatricians and other professions – nursing, general practice, you name it – people who understand the complexity of the frail elderly.
‘Do we have an army of them?’
‘We’re getting an army of geriatricians in the hospital sector, which is the bit I know. But we’re an ever-expanding speciality and we are seeing people choosing geriatric medicine – it’s good. I think all sorts of things are helping with that. The fact that there is a large department of geriatric medicine in most Australian big hospitals is important. There’s a critical mass of us now, to demonstrate that you can have a good life, a good career, being a geriatrician. I hope that some of us can be seen as good role models. There’s a lot of nice things you get out of the profession because it’s holistic, you have an excuse, you have an important reason to get to know your patients well – what sort of people are they? What did they do? What are their family circumstances? You have to know all that to know how best to treat them, and that’s actually quite rewarding.’
‘You’re a people person.’
‘Well, you’ve got to be. You can’t look after a poor, frail, incontinent older person if you don’t like that sort of person. Some people would just throw their hands up in disgust having to deal with such a patient. But you’ve also got to be a good general physician, know your way around all the systems with a certain degree of expertise. It’s putting it all together, that’s our role.’
He doesn’t think we have a particularly frail-friendly hospital system. ‘The emergency department is diabolical for older people, because it’s designed to resuscitate and save lives from severe injury and severe emergencies like heart attacks and strokes, trauma. So the little old lady in the corner might have a similar death rate to the heart-attack patient, but because they’re old and frail, people don’t realise they may have a twenty per cent chance of dying in the hospital as well.’
The triage system in the emergency department does not help, Professor Lindley says. ‘An older frail person could be very sick and be triage category three or four, which is not a priority in the emergency department. And emergency departments are hectic, they’re very noisy, they’re the worst environments for people with delirium, which is a very common way of old
er people showing they’re sick.’
Professor Lindley raises the name of a geriatrician in the UK, the late Bernard Isaacs, who coined the term ‘the giants of geriatric medicine’ – syndromes that older frail people tend to present with when they get sick, which are ‘giants’ because of the gigantic effect they have on the patient and their family. ‘His syndromes were falls, inability, incontinence, iatrogenesis –things like medication’s adverse effects, the stuff that doctors do to people. Incontinence, stroke, and delirium, confusion.’
Professor Lindley says these syndromes were reviewed at Westmead Hospital – he thought they required an update. ‘[And now] we’ve got three new ones for old people … sepsis, pain, and breathlessness. They’re very common syndromes that old people present with when they get sick.’
The family is key, says Professor Lindley. ‘There’s an infinite variety of families. In the last few months I’ve had examples of some of the nicest possible families you could imagine, and some of the worst. All life is out there.
‘The thing about medicine is that it exposes you to all of life … The media and society may not like what is out there. I can give you an example. I’m personally against euthanasia because I see so much abuse of older people. And a good example is Sydney. If you’ve got a rundown fibro shack in Blacktown, you’re still looking at half a million to a million dollars of property. When you start having that sort of money dangled in front of relatives, they misbehave. And a surprising number of older people have estranged children, for all sorts of reasons. And we see evidence of potential emotional abuse and financial abuse all the time,[so] the thought of euthanasia fills me with horror because for all the Andrew Dentons of the world, for every ten of the Andrew Dentons, there will be one unfortunate person who’s got a family who just wants to get rid of them to get their hands on the cash. So I think it’s a very … It’s like all these things – fantastic for the many but extremely dangerous for the few.’
