by Amal Awad
‘We’re grieving because we’re losing the person’
Dr Llewellyn-Jones says that with increased life expectancy it’s beholden on health services to prevent, as much as possible, degenerative diseases of the brain.
‘For instance, the risk factors for developing vascular dementia, such as high blood pressure, high cholesterol, diabetes and heart rhythm problems, can begin in peoples’ forties and fifties. So if you’re going to have an impact on the vascular health of a person’s brain, they need to adopt a healthy lifestyle well before they actually get into their sixties,’ he says.
As an aged care psychiatrist, he observes that people fear the loss of their physical and mental functions, and they fear death. Taking a preventative approach in your thirties and forties offers no guarantees, but it increases your chances of a healthier old age. Things like reducing alcohol (a potential carcinogen), not smoking and exercising regularly reduce the risk of chronic medical conditions in older age. ‘Because if we were able to choose, I would imagine everyone would like to live as long as possible with pretty good, robust health, and then when it got to the end of their life, they would have a brief period of illness, not suffer too much pain, and die peacefully. Whereas what happens at the moment is that people can spend many years lingering with multiple chronic medical conditions, multiple impairments and handicaps, which in itself becomes something of a living death.’
So we’re not getting that part right. ‘By controlling people’s blood pressure, their cholesterol, getting them to eat a healthy diet, doing regular exercises – not rocket science – keeping to a reasonable weight, et cetera, you’re going to have a substantial impact on the likelihood of people developing vascular dementia later in life. The bottom line is that what’s good for the heart is good for the brain.’
Alzheimer’s is a lot more complicated because it’s related to abnormal amyloid protein being deposited in the brain. At the moment we don’t understand why that occurs, and we can’t prevent it. None of the doctors I spoke with expressed much hope of a cure, or even significant advancements, any time soon, though news stories offer the promise of advancements. In 2018, TIME reported that a new anti-amyloid drug tested by Japanese company Eisai and US-based Biogen showed promise. But the same report noted that other experimental treatments had ended in failure.
Alzheimer’s is the main type of dementia, but vascular dementia is not far behind. Recent statistics from Dementia Australia report dementia as the second leading cause of death of Australians. More specifically, 5.4 per cent of male deaths, 10.6 per cent of female deaths, making dementia the leading cause of death among Australian women, eclipsing heart disease, the number one killer of both men and women for decades. In 2018, Dementia Australia said that more than 425,000 Australians have dementia.
‘The brain’s a bit like a sponge,’ says Dr Llewellyn-Jones. ‘It’s full of literally millions of blood vessels. If all these blood vessels were laid end to end they would be over 600 kilometres in length. These tiny blood vessels are called microcirculation. And to keep the brain cells healthy they need to remain open and … to pass blood from one to the other. If, due to high blood pressure or high cholesterol, they start breaking down or getting blocked, you get what’s called “small vessel disease”. So it’s not like you have had a stroke due to blockage of one of your brain’s major blood vessels, and a whole segment of the brain has died, and you can’t move an arm, or a leg or speak. With small vessel disease you get damage scattered throughout the brain, which means although you can still move and talk, its overall functioning is impaired.’
Dementia mainly affects older people, but is related to the diet and lifestyle risk factors Dr Llewellyn-Jones outlines, as well as to genetic factors, high blood pressure, hypertension and high cholesterol. He has patients with different types of dementia, generally signified by a loss of cognitive functioning and short-term memory, including people in their fifties who are suffering young-onset dementia. These people face a sudden shift in their timeline – what they projected for themselves upended. As Dr Llewellyn-Jones explains, ‘Many of us talk about, “I’ll do that when I retire,” expecting that life will go on limitlessly in front of us, and we’ll have the health to do whatever we want to do. So you can imagine the loss that you’d feel if you found out in your early fifties you’ve got dementia. Particularly if you have the insight to know what that means, and know you might not be compos mentis in seven years’ time. You’d look at all the life ahead you’ve suddenly lost. So it’s a huge adjustment.’
Making matters more difficult is that most dementia services are designed for people in their seventies and beyond.
It’s common for Dr Llewellyn-Jones to see people with depression, young and old. People who are experiencing grief, especially older people dealing with the loss of a spouse or an adult child, which may develop into a clinical depression. Anxiety disorders are reasonably common in older people, he adds. ‘And sometimes very difficult to fix, because often people have been anxious their whole lives, but towards the end of their life they sort of lose their resilience and coping strategies.’
When they were younger, they were anxious, but coping. But if they experience a ‘cascade’ of losses, such as that of a partner, their physical health, the death of a friend or a pet, to name a few examples, ‘This cascade of different stresses or traumas erodes their resilience, and their anxiety disorder, which was once manageable, becomes overwhelming. I find that’s a heartbreaking thing.’
He says that people who don’t want to talk about their troubles will never end up in his office, scared off as many are by the stigmas attached to mental illness. But, he points out, one in two people experience a mental health problem at some time in their life; and one in five people suffer depression at some point. ‘These aren’t uncommon problems. So, generally speaking, when people come to see me they’re willing to be here.’
Dr Llewellyn-Jones cuts a sympathetic figure. For all of his knowledge, he’s also willing to share his own experiences of tragedy or hardship. On why he was drawn to this work, he circles back to discuss an opinion piece he wrote for the Australian in September 2017 headlined ‘Child abuse royal commission’s work must continue’, in which he wrote about the cruel effects of abuse suffered by the victims. He is an abuse survivor, and he treats many like him. His personal experience of knowing what it’s like to live, powerless, in an institution ‘means that I have a real sense of what it’s like for some of my older patients living in an institution, where their human rights may be limited or taken away from them’.
He doesn’t want to generalise, but he reiterates the importance of treating people as individuals. ‘A basic human right is that our dignity should be respected. But often my patients in care, and their families, tell me they’re not being treated compassionately, and that carers can lose sight of the person who’s been imprisoned by the disease that put them into an institution.’
Dr Llewellyn-Jones is deeply empathetic, but also pragmatic and solutions-focused. You can address situations, but not everything can be solved. ‘We live in a world where we expect that everything can be fixed … Maybe we have to be more accepting that there are certain things that just can’t be fixed.’
In his own life, this has played out personally. He has an adult son who has autism and he recalls how deeply he questioned his son’s condition. ‘I can well remember being in my early thirties, questioning, why me? Why should this happen to me? Why should it happen to my son? Because he has very severe autism and was and remains severely intellectually handicapped.’
His son would be up most of the night for years, leading to countless sleepless nights for Dr Llewellyn-Jones and his wife. After one such night, he says, a voice came into his head. ‘Being a psychiatrist, I knew I wasn’t crazy. [It said], “You’re asking the wrong question, Rob. The question is not why Damian, but why all the other kids? Why Daniel? Why Peter? Why Charles? Why have they got it? That’s the question you need to
ask, because without asking those questions, you won’t be able to help them. And by helping them you might achieve some sort of meaning out of this tragedy.”’
Dr Llewellyn-Jones went on to establish Giant Steps Australia, a charity for autistic kids, which now has schools in Melbourne and Sydney, helping hundreds of children.
‘In my own life when I’ve dealt with tragedy, I’ve tried to get some meaning out of it. And, for me, the meaning is trying to help other people who are maybe going through similar things. Because if through me going through this I helped somebody else, at least it’s not in vain.’
Each individual has to determine their own way of achieving meaning, he says. ‘But I personally would find it very hard to live in a universe that’s completely random and all these bad things happen to people, and there’s absolutely no meaning in it.’
It’s here that Dr Llewellyn-Jones encourages younger people to put themselves in the shoes of older people. We should all care very deeply about how people cope with old age, as one day it will be our turn. If the right services for older people aren’t here now, they won’t be when we need them. Older people tell Dr Llewellyn-Jones that they feel invisible in our youth-oriented society swept up in massive technological change. ‘You don’t see a lot of older people in movies or the media.’ It’s improving, but the media is focused on youthful figures. In order to improve the care given to older people, working-age adults who are carers need to understand what it’s like to be an older person. ‘Because you have to sort of walk a mile in that person’s shoes, or put yourself in their shoes, to understand what it would be like. And I think that’s something that, unless you’ve either been through it yourself, or you work with older people, you probably don’t necessarily have a natural understanding of what it’s like to be old.
‘When society was structured differently, you grew up with granny and grandpa living in the same house, you would automatically have understood what it was like to get old, and maybe you would’ve seen your parents looking after their parents, and that would’ve been a role model for you to look after your parents. Whereas now, so many frail older people are no longer in their homes or in their family’s homes, they’re in institutions.’
And a group that he feels is particularly invisible is older carers. ‘It may be you’re looking after your husband who has dementia in your family home, and, you know, you’re up all night because he’s up all night, and he can get very upset and agitated about having a shower or shave in the morning, or he gets up in the middle of the night and pees in the fridge, or whatever. All of that sort of stuff does happen. But when you go down to the shops, people don’t know what you’re going through. The burden that you carry is a silent burden.’
He says that most of his patients and the families he cares for are stoic about it. They don’t complain. ‘So what of the mental state of carers? Don’t they need help, too? Of course they do. I think that’s very under-recognised, how traumatic it is to be looking after a loved one who has a serious illness, whether that be cancer or whether it’s kidney disease, or dementia, or any number of illnesses. It’s traumatic to see the person change so that they’re no longer the person they once were. That’s very confronting.
‘In a way, we’re grieving because we’re losing the person,’ he adds. ‘We’re losing the person we married, or the person who cuddled us when we were a child, or who was always there for us. And they’re grieving, too, because they’re losing the person they used to be.’
He recommends counselling, for both the person afflicted by age and illness, and family members struggling with the changes. ‘Because as human beings it’s very hard to deal with helplessness and powerlessness. You love that person so deeply, you want to help them. You want things to be better. And sometimes they can’t be because the person doesn’t want to take the help that’s available. Or sometimes they can’t be, because the illness and the condition can’t be fixed.’
Even psychiatrists need a tune-up. Dr Llewellyn-Jones says he meets regularly with colleagues to talk about difficult cases and to provide support to one another. ‘I do a lot of physical exercise as a way of coping with the stress of my role.’ Though of course, as he points out, for some older people exercise may not be possible.
The purpose of counselling is to try to help the person to a more balanced place. ‘So that there’s a lot more of what the person can still do, and less of the cancer or kidney failure or whatever chronic illness they’re dealing with.’
Father’s Day
We’re at my brother Alex’s house on a sunny afternoon, having a family lunch, shaded by a sprawling umbrella as we debate who among us is Mum’s favourite child. Mum pretends that such a thing is impossible. But we all believe it’s true, and we can joke about it. Some things, though, we don’t make light of: experiences, relationships, memories better forgotten. We all have our hidden depths. We all have our singular perspective on how we were raised, how we were taught to see the world, and how we treated each other.
We’re a tight family. But things are different now. Weightier. More significant even though the bones are exposed. Sometimes everything we didn’t talk about, so compressed, threatens to come to the surface.
Isn’t childhood difficult for everyone?
It becomes increasingly evident that how we age is not simply a matter of frailty and failing bodies, wandering minds. It’s about who is by our side as we age, and what rises to the surface in each of us. I think about this frequently. The significance of having support, company and a reliable network of family and friends. I think about it as friends from Dad’s past hove into view. Dad and Mum aren’t as social now. I have tried in vain many times to take them to visit old friends, the ones who marked their early memories in Sydney, as has my brother Hossam, who frequently spends time with my parents. Sometimes they seem keen, other times Dad evades the suggestion. He’s locked into the present and the past is haunting, I think.
Still, daughters of Dad’s friends increasingly reach out to me on Facebook. And one day, a friend of my father, Abu Jamal*, calls me on my mobile. ‘Do you know who I am?’ he says in Arabic, his kind voice immediately familiar.
‘Yes,’ I tell him.
Abu Jamal has tried to reach my father and, having no luck, has called me instead.
‘Just tell me, is he okay?’ His need to confirm that my father is well, and something in his tone, send a ripple of deep emotion through me. The concern, the love – it’s all there, and my heart breaks open in gratitude.
‘He’s okay,’ I tell him.
Dad’s the guy people who work in cafés know. ‘We haven’t seen you in a while,’ I’ve heard people say, looking genuinely surprised, hurt almost.
I tell Dad about the call, and it seems to trigger something. He finally agrees to an outing to visit these family friends, people my parents have known for decades. Abu Jamal has cancer. His doctors have told him treatment is pointless at this stage.
It’s a bit of a drive, and we make a day of it. Dad’s mood is practically ebullient. A familiar journey, one he used to take so easily in the past. It seems to boost his mood. And when he meets with his friend, the relationship dynamics haven’t shifted. My mother sits with Im Jamal*, and my father retreats to the backyard with Abu Jamal to inspect his garden. Everyone gardens in old age. I listen as my mother and her friend converse, the ‘old days’ the recurrent theme. They lament never learning how to drive (Mum tried, but with kids and no one to look after them, finishing her lessons proved impossible). Memories. Im Jamal lifts hers into the present, lighting up simple acts and feelings into something richer and more meaningful.
The good old days.
We tip our cups upside down, but we fail to glean much insight – the coffee was too watery. There’s hardly any residue.
Later, I take Mum and Dad to an Arabic grocery store, the kind that’s more warehouse than shop, stuffed to the gills with products from any number of homelands. Scents of home.
; As we pack our groceries into the car, a realisation dawns. ‘Dad, remember how you used to take me out to the western suburbs all the time when I was younger? Now I take you.’ I laugh, because it’s not a sad moment. It’s a calm, nostalgic, happy one.
6.
SAYING GOODBYE
My parents have their complex stories. How long have I diminished their pathways as being less complex than mine? They often speak to me in Arabic. I reply in English. How long have we spoken two different languages and how does that make them feel?
Stepping into a carer role will vary in its levels of responsibility. Some caregivers look after one or both parents, or a sibling with special needs. For some, it’s a profoundly life-changing endeavour, which will reshape both lives. Certainly, all the people I sat with and spoke to reported a shift, often seismic, not only in them and their assessment of their own mortality, but also in their relationship with the person they were caring for – especially when it was a parent.
Getting old or dying. Either one, where children are involved, is a process of reconciliation – of past and present situations, and of a new way of looking forward.
‘You understand where they’ve come from’
When we meet, at his expansive property in a seaside suburb of Sydney, James* is all smiles. But the grin hides the lingering pain of his father’s recent death. His mother passed on several years before.