by Amal Awad
They had a good marriage.
Time made it easier. Just time. Just getting on with it.
‘I’ve always been one of those people: well, there’s nothing you can do about certain things. Providing in your own conscience you feel that you’ve done the right thing by him. I’d ideally love to still have him at home, but it just was not going to be possible.’
Pam says their children have always been very close to John. They feel guilty, too – for not visiting him enough, or not helping Pam out more. ‘They’re busy. They’re all working. They’ve all got kids. You know what life is like at this stage,’ Pam says. ‘I tell them not to worry about that, because I’m close, and I don’t have their commitments anymore. I’ve only got myself to worry about.’
Pam says she’s not lonely; she keeps herself busy. She makes a point of cooking for herself (her sister’s advice is to eat properly, maintain normalcy). She’ll enjoy a couple of glasses of wine in the evening. ‘I still have that. We always had that. We’d always sit down and have a drink before dinner and a glass of wine with dinner. I still do that, but I mean you’ve got to tell yourself not to overdo it, obviously.’
Pam doesn’t have major life plans in place. It’s a day-by-day proposition for now. Friends from the beach she swims at, including people who knew John, are a part of her life. They are aware of his situation; they’d always kept a bit of an eye out for him. When he could no longer swim, fellow swimmers would sit with him to allow Pam a swim. Now they invite her for a quick coffee some mornings. They’re younger than Pam, but they encourage her to socialise with them. They’re good company.
‘When you’re looking at this man who you’ve loved for sixty-plus years – do you see the same man? Is that a comfort for you, seeing him every day?’
‘I do. Yeah. Every day. It is. I’ll say, “Hey, I haven’t had a kiss today … There’s no one looking.” You know, we have a bit of a joke. And he’ll laugh and he’ll give me a kiss. And occasionally he’ll look at me and say, “I love you very much.” And that comes straight out.’
She adds, ‘Other times I’ll say, “Do you love me?” and he goes, “Mm.” I’m obviously having a bad hair day.
‘But yesterday I was at the park and one of my sons rang, and I put it on loudspeaker, and I said, “Oh, John, Tim’s on the phone.” Often he just looks at the phone and it doesn’t register. Tim said, “Dad, Timbo here, how are you?” And John replied, “Oh, good, Timbo, how are you? Lovely to hear your voice.” That breaks Tim up a bit, of course.
‘I mean, he’s still there, but … [My psychiatrist] explained to me that they have these little windows of being quite coherent. Plenty of clarity comes out. And then, as soon as it’s got out, it’s gone.’
‘It ends quickly,’ I say.
‘Gone.’
‘Are you there for those?’
‘Yeah. Yeah … and he’ll say something quite coherent and I’ll carry on and say, “Yeah, well, you know, if we did this or that,” and you can see he’s thinking, what’s she talking about?’
‘You’ve got to keep going’
One of the first things I notice about Ellen* is how her house and possessions seem frozen in time. Like so many of the older people I met with, she still uses a landline, which she takes off the hook as a courtesy before we begin.
She is unfailingly polite, almost formal. ‘My name is Ellen,’ she begins, speaking into the recorder, ‘and I’m here to talk to Amal on the effects of dementia on being a carer, on me.’
Ellen is eighty-one. She is in recovery following spinal surgery last year. She was told that if she didn’t address the problem she’d be in a wheelchair by Christmas. ‘I could hardly walk. So I went ahead and had it done, which was a very big thing for me to do. I had a very good surgeon.’
She was in a state of distress, she got counselling. ‘But I’m the type of person who … if I know I’ve got to do something, I’ll go do it. Just go.’
But when she returned home, Ellen believes she suffered post-traumatic stress. The rush of adrenaline had dissipated. ‘I thought, here I am, I can’t do anything.’
Ellen had help from her family, and she feels this was a primary lesson from the operation – ‘I have to have help. And I know I can’t do everything. I’ve had to accept that this operation has slowed me down, and it’s been really good because I’ve had to stop and think and accept what I can’t change. Because the thing is I couldn’t garden; I couldn’t do any damn thing.’
Six months later she is doing very well. Golf might have to wait, but she remains social. ‘I make myself go over and see the girls twice a week. But I just find I’ve had to stop and look at my life.’
She has become more spiritual, grateful that a doctor enabled her to continue walking, perhaps added years to her life.
‘I found my life was just … I had to be busy. I kept thinking I had to be here, I had to be there. It was crazy. But now I’m happy in this world.’
Ellen says that now she can just lie down on an idle afternoon and shut her eyes and listen to music. It’s been an important lesson, given the responsibilities she carries in life. Grace*, in her eighties, is Ellen’s sister-in-law. She suffers from dementia, but remains at home despite her short-term memory being shot. Ellen looks after Grace with love and care, but she makes a point of declaring that she’s changing how she deals with people. ‘I’m not worried about anyone else … I used to be the one who was checking on everyone. I’m not doing that anymore. I’ve just sort of thought, no. So I don’t know whether that’s good or bad.’
I venture that it’s good.
‘Because I’m peaceful, I’m at peace. I’d say I’m at peace with myself.’
Ellen does exhibit acceptance. She says uplifting things. ‘You’ve got to keep going. You don’t give in.’ Then she declares, ‘I said I’ve got nine years of living, so I’m going like a train now. I’m going to live.’
And, Ellen says, she’s happy. Her children are all getting on with their lives. They have nice chats together, they don’t whinge to her about anything. She busies herself with gardening and cooking; both are tasks she can manage, even if she has to cap off the gardening at half an hour. ‘But I could stand there and cook all day. I just can’t do what I used to do. And I’ve got to admit that I’m nearly eighty-two. I say to myself “You’ve got to, you know,” but then I think, should I be saying that or should I just be pushing on?’
One way she just ‘pushes on’ is in her capacity as a ‘sort of’ carer to Grace.
‘It started about four years ago when she started to forget things and was having a few accidents in the car and denied them – was denying everything. I had my eightieth birthday two years ago and she didn’t know anyone there. She was introducing my family to my family. It was just awful.’ It was heartbreaking for her kids and grandchildren, Ellen says. ‘Grace never married. This lady travelled, very intelligent, the most beautiful, sweetest lady you could ever wish to meet, would never complain. She does get a bit crabby with me, but not too often. She was taking my grandchildren to their brother or sister and introducing them, and it broke one’s heart. It was awful … There was about fifty people and I think that she was overwhelmed. She didn’t know who was what.’
It’s Grace’s contrast to her former self that Ellen seems to grapple with most. Forgetting or missing appointments, making appointments on top of appointments, doing silly things. ‘This lady is beautiful, as I say well-travelled, had a big job, never married, very religious but she … got progressively worse and she was denying everything. She sideswiped a car and nobody knew about it [because] she just went home.’
Ellen describes how the accident took place and the disparity in accounts – Grace saying it happened at night, the insurance company and witnesses declaring it had occurred in the morning. She says Grace would never have been travelling that way at nine o’clock in the morning. ‘She will stand by that till she dies. I didn’t argue with the insurance company, but how c
an you when they have written statements?’
That was the start of it. Then Grace drove through a parking barrier at a shopping centre, after trying to get out using a Medicare card. She knows who Ellen is; she even asks about her back, post-surgery. But she gets Ellen’s kids muddled up if she’s speaking to them on the phone (her recall is better if they’re face to face). If Ellen asks Grace to take out the garbage, she’ll bring in the mail.
‘The problem is she tells little lies to save herself. She does quite bizarre things. I’ll go up there sometimes and I can’t find her … and she’ll be down in the garden, right down the corner sitting on the ground.’ Grace will tell Ellen that she’s talking to the cat.
So Grace isn’t entirely engaged, not entirely able to go about day-to-day activities. But she’s sweet and loveable, and knows how to mask her decline. She’s wily, and has no intention of going into a home. Ellen visits her about three times a week, and Grace has a carer on three days for three hours.
Grace forgets to eat, says Ellen. Instead, she discovered, Grace has a liking for red wine, which she consumes while watching the news.
‘Then somebody said to me, “Does it matter?” See, she wants to stay in that house, that’s the end of the story, and a couple of my children have said, “She’s happy, Mum. She’s in her world where she is. She has a cat. She has a garden. She doesn’t venture very much past the side gate.” How she hasn’t fallen and killed herself, I don’t know.’
Grace sends off random cheques to the taxation department. She doesn’t shower, and she wears the same clothes all the time. ‘She looks like a bag lady, and she’s got a lot of money,’ Ellen says.
The carers adore Grace. It’s self-flagellation that besets Ellen – she finds it difficult to visit Grace and leave her, seeing her not comprehending things. ‘I come home and I’m so … blah.’ Ellen looks pained. She can’t be a full-time carer to Grace; she knows that Grace needs more care, but is powerless to deliver it without Grace’s permission.
Ellen has experienced heartbreak and loss. She reflects on how her parents’ health and decline affected her, the way life seemed to get worse before it got better. Trips back and forth to help them as they dealt with poor health. But Ellen was married to a supportive, loving man, who himself later fell ill with cancer. ‘It’s awful. But, anyhow, everyone has their pain. Nobody gets out of here without some suffering. We have to work to get here, and we’re going to have to work to get out. I do believe that, don’t you?’
Ellen’s expression tells me it’s not a rhetorical question. ‘I don’t know what brings us here, to be honest,’ I say. ‘I don’t know what I think about that, but I definitely feel that nobody is immune to pain. I think that if you think you are, then you are drinking something that you shouldn’t be drinking.’
We share a laugh.
Ellen visits an aged-care psychiatrist. He has told her, ‘You’ve got to get more care, end of story.’ He is witness to her sorrow and grief, and sees that self-care is paramount if Ellen is to avoid spiralling downwards.
Years after her husband’s death, Ellen says her psychiatrist helped her through the turbulence of loss. She tried to run away from it, but it caught up with her: her husband passed away from cancer twenty years ago, but the pain of losing him took a physical toll years later, and eventually her doctor recommended she see a psychiatrist.
‘I’ve got a big family and I’ve got very caring kids, grandkids, sisters, brothers, so I really kept busy in that first period of about six, seven years. Then I went crashing down. That’s when I went to [my psychiatrist], so he’s been very good,’ says Ellen.
She is clear on why having that counselling helps: she suffers anxiety. She didn’t marry again, or form any long-term romantic partnerships following her husband’s death. ‘I know my husband said – which, by the way, is a terrible thing for him to say before he died – “I want you to find somebody else and make them happy.” There’s no way I could sit with another man in this house. I’ve got friends. I play golf with men. I go out, but I don’t go out separately with men. We go, groups of us.’
Ellen still frets about Grace, despite her determination to care less about others’ problems and focus on herself. ‘My problem is, I know the carers, and some of them have said, “You’ve got to be hard. You’re not hard enough.” I can’t … I don’t want to take her independence away, you know what I mean?’
She doesn’t want to order Grace about, calling her out on bathing, or changing her clothes. ‘I cannot bring myself to do that because to me that’s just taking her everything away … It’s a very tricky situation for me.’
Ellen worked as an aged-care nurse for thirty years, which included nursing dementia patients. ‘When I was nursing, I was giving those patients love and attention. Course, today it’s probably different … today maybe [nurses] hardly talk to anyone and they’re all doing paperwork. That’s when I got out. With Grace, it’s too close, and it’s hard for me to see her. I could help the others but I can’t help myself with her.’
Grace doesn’t admit to having a poor memory, but an outing with Ellen’s son recently saw Grace confess to him, ‘You know, I can’t remember things now.’ It was emotional for Ellen’s son, who adores Grace.
There is a sad aspect to this story that relates to Grace’s past. Her mother was a milliner in the 1920s, making hats for department stores. Grace still has some of those hats, in their original boxes. She offered them to Ellen for her daughters, retrieving them from storage where they’d been for a long time. Grace wanted to dust them off, put them in the sun. ‘She said, “I don’t want to throw them out.” Oh, that breaks your heart,’ says Ellen. Then Ellen’s daughter paid Grace a visit, helped her stock-take all her jewellery and decide who Grace wanted to receive it. Grace revealed a wardrobe with clothes from ‘way back’.
‘[My daughter] said she pulled them out and they’re all moth-eaten. Grace was livid. [My daughter] said, “Mum, I’ve never seen Grace angry. She got them out and she threw them all on the bed.”’
Ellen wonders aloud about this: how to deal with this decline? There is something to her expression that suggests it’s an expansive issue, that a sense of helplessness permeates us all when we witness the effects of cognitive decline. It seems, I realise, that she is asking, what can you do when it seems like nothing can be done?
‘Things change as you get older’
There is currently no cure for dementia. It’s something Dr Naganathan doesn’t believe he will see in his lifetime. ‘I could be wrong on that, but that’s my personal view. So the big question is, can you do things in your mid-life that will reduce your chances, delay the onset of dementia?’
And other problems – your body collapsing under the weight of ageing. Because many things can go wrong with your body. I ask Dr Naganathan about prevention – of conditions such as heart disease, for example. People checking in with their GPs and monitoring these things. For young people, is there hope for them; is there something they can do? Is healthy ageing just luck?
‘It’s a bit of luck,’ concedes Dr Naganathan. ‘But it’s all probability … So, you can decrease your probability by small amounts … If the individual adopted in their middle age a healthy lifestyle, and watched the medical things, which are blood pressure, cholesterol, they would decrease their probability by a small amount … If the whole country did that … it probably would have an impact, right? And it must, because there are so many studies to show the influence of socio-economic status on health. So lifestyles must influence health, even in a wealthy country like Australia.’
He breaks it down to Sydney. You can see the differences in heart-attack rates, he says. He gained insight when working in hospitals in the western suburbs. ‘We see the same diseases, but they were happening to younger people as you went out west.’
In essence, for individuals, adopting a healthy lifestyle and addressing risks factors such as blood pressure and cholesterol lifestyle changes are going to m
ake a small difference to the chances of getting a heart attack, but if the whole country made these changes it would have a big impact on the health of the community. ‘That’s public health for you.’
Dr Naganathan says that believing something won’t make a difference can lead to cynicism. ‘But it’s why general practice is so important, because that’s where you can do these things that can have a public health impact.’
He offers another example – weight loss. ‘They say that for middle-aged people, obesity is a risk factor for heart disease. There comes a point where, for all the frail people, being a bit overweight or even obese is actually better for you. Statistically any weight loss above a certain age is actually harmful. So you see, it’s really tricky. You’ve had a lifetime of being told you need to lose weight and you need to worry about your cholesterol. You get older and frailer and then actually you’re better off …’
Because how many of us have experienced a parent losing their appetite, as my dad has, and their clothes getting too big for them, and conversations become entreaties? ‘Please eat.’ But, they say, ‘I’m not hungry.’ In that situation the weight loss is more harmful.
‘[And] we talk about this all the time: you can end up on too much medication. Even the evidence that above a certain age blood pressure is a risk factor becomes a bit weaker. That cholesterol is a risk factor. Things change as you get older.’
Dr Naganathan jokes with medical students that one of the most satisfying things is to tell a woman aged, say, eighty-five, who’s been denying herself chocolate cake for years because when she was sixty her doctor warned her about cholesterol, ‘Now that you’re eighty-five, you can eat that chocolate cake. I want you to put on weight and I don’t care how. Eat all the things you enjoy.’
He warns that wording the advice correctly is essential. ‘I’ve made the mistake of saying it jokingly, and it’s been misinterpreted as “I’m eighty-five, so you don’t care.” Or, “I’m eighty-five and you think I’ve lived long enough, that’s why you’re saying to eat the chocolate.” I go, “No, no – scientifically, the evidence is that once you’re eighty-five, low cholesterol could actually be more harmful. Having nutrition is more important than worrying about your cholesterol. So I’m saying it to you for two reasons. One, scientifically, maintaining your weight’s important, and it doesn’t matter how you do it. And two, I think you should eat chocolate cake because it’s quality of life, then.” So, that’s complicated to explain to people.’
