by Amal Awad
Carolyn, fifty-four, has a good relationship with her two grown daughters. But she didn’t enjoy a similar connection with her parents. Her father, Lester, died in 2010; Carolyn’s mother, Valerie, died in 2017, in a progression of events she described as ‘very fast’, following a diagnosis of Lewy body dementia.
‘Robin Williams [the actor] had it,’ Carolyn tells me. ‘It has a lot of the attributes of Parkinson’s that are hard to diagnose. Often they can only diagnose it when somebody has died.’
Carolyn’s mother didn’t really have any symptoms, but one of the neurological tests doctors do is to ask patients: can you draw a clock? Valerie couldn’t draw a clock. ‘She couldn’t figure out where the numbers went.’
Valerie had worked as a bookkeeper. ‘She was very with it and very particular about things,’ Carolyn says. ‘That was a great frustration to her. I had noticed that she’d stopped reading books. She mainly watched television. She didn’t have any capacity for reading anymore.’
Valerie had resided in a retirement village for around ten years before her death. She lived alone. And as her former husband had done (Carolyn’s parents divorced when she was fourteen), Valerie transitioned from the retirement village to a nursing home.
‘She had a fall and she fractured her pelvis. When she went into hospital, they were saying she’d have to go into long-term rehab in order to be able to get walking again. Everything was fine. She just went into a deluded state where she thought the nurses were trying to kill her. She’d always watched and read a lot of British murder mysteries. That was really her thing. I think that fed into a lot of it because … I would go in and she’d say the nurses pushed someone downstairs last night. I thought that it might have been a urinary tract infection because that can make you go quite crazy when you’re older.’
Carolyn said she kept waiting for her mother to ‘get back to normal’. She never did. Valerie subsequently had another fall and broke her hip, which led to a replacement. She refused to cooperate with anybody who tried to get her up and walking. Consequently she couldn’t walk and Carolyn had to put her into a nursing home.
‘They had said to me Lewy body is very fast.’ In Valerie’s assessment for aged care, her condition sent her to the top of the list – straight into a nursing home. ‘Mum hadn’t even really believed it then. That she had it. She kept saying, “I don’t have anything wrong with me. I think they’re wrong.”’
The neurologist told her she would no longer be able to drive.
‘She was really horrified by that. She’d always been independent.’
At the time, Carolyn talked to her mother every day and saw her often. But she had a complex relationship with Valerie.
‘She was very self-centred always,’ reflects Carolyn. ‘All my life.’
Carolyn has a sister, Heather, who has lived overseas since 1987. Carolyn says her mother would hit them when they were young; she linked it to her mother’s own experiences of abuse.
‘Her mother used to really beat her. [Our mum] wasn’t as bad with us. Thank god our father never, ever hit us. We were genuinely frightened of her. It could be a tiny thing. I can remember being hit on certain occasions but I can’t even remember what I did.
‘When we were teenagers, we went to every concert that was on, and my sister and I used to go to Countdown when it was on in Sydney, and stuff like that. We never did anything wrong. Never, ever, ever. Because we knew she would kill us.’
Carolyn turned to her husband, Darren, for advice; and, despite the physical distance between Carolyn and Heather, who felt guilty for not being here to help Carolyn, they made decisions together regarding their mother.
‘My sister just said to me, “Whatever decision you need to make, you make that decision.” Because she works in the health industry, whenever I would tell my sister the professionals were saying this, she would go and find a geriatrician in her hospital and ask them. She would also give me things to ask.’
‘Do you think the advice you generally received was pretty sound?’ I ask. Were the staff helpful?
‘I think that they were pretty good. The hospital that she was in, they had a nurse who just dealt with older patients.[The nurse] also gave me a lot of really good advice on where were the good nursing homes … for Mum’s particular condition, and who would be good. She would ring them and rustle up a bed and that sort of thing. She also advocated on Mum’s behalf and made sure that the hospital kept her in there until she could get into a good spot. They would have a meeting with me and her and the geriatricians and the physios to basically say, “This is what’s happening and this is what we think will happen.” Where I would just cry and embarrass the young physiotherapist.’
Tears flowed due to the swiftness of Valerie’s deterioration. ‘It was really quick.’ It was very different from the experience Carolyn had had with Lester, whose decline was a longer, slower process.
Valerie fell in March; she had passed on by May. Carolyn was shell-shocked. ‘About how quick it was … And Mum had said to me there’s a part of her that knew she was not normal at this point. She would say to me, “Don’t let anyone know and don’t let anybody come and see me.”’
Carolyn describes Valerie as being ‘very, very proud and horrified by the indignity of it all’. She was mortified when friends would pay her a visit in those months, barely speaking out of embarrassment. She couldn’t be reasoned with – she was genuinely seeing things.
‘She would say, “Can’t you see them?” She was hallucinating. She would see her father, which was good because that was quite soothing because she loved her father. That she knew wasn’t real. It was interesting that she thought the nurses were trying to kill people and lining up for funerals; that she had to get away from them. That’s why she fell a bit. But she knew that seeing her father wasn’t a real thing. She found it very comforting to see him.’
Valerie, a Christian, was in a Brethren nursing home. Carolyn made a point of posting up family photos in Valerie’s room. She also placed one of her wooden carvings of hands in prayer above her bed. ‘It was almost like I was declaring she’s a Christian. Giving her her best shot.’
‘Do you think that helped her at all?’
‘I don’t think it gave her any solace in the end. At all.’
Valerie was upset about her circumstances, about being in a nursing home and confined to an oversized chair or bed. She couldn’t do anything for herself. She couldn’t even feed herself.
‘I would always make sure that I told the minister at the hospital, “Go and see her, whether or not you think she’s [receptive],”’ Carolyn recalls. ‘I did that with my dad, too.’
The chaplains at the hospital were responsive to her request for her father, pleased to be asked, surprised even. ‘Especially because my dad had advanced dementia. He was in the hospital a couple of times. I said that just because he’s not responding much … these are all familiar things to him. Please go and pray with him.’
‘And did they?’
‘Yes. They did. I would know because they’d always leave the card on the bedside table.’
Carolyn did the same for her mother, telling the religious visitors, ‘Whether or not you think she’s connecting with you, this ritual is very important to her.’
‘In the end it wasn’t,’ says Carolyn simply. ‘In the end there was nothing.’
Lester, Carolyn’s father, was living alone in a flat when he experienced an acute episode. ‘He had an episode where he thought it was the 1970s,’ says Carolyn.
‘My uncle rang me and said, “I just tried to ring Lester and he keeps asking where you all are.” It was nine-thirty at night and we were a long way away. We sent around a doctor, but my father wouldn’t let him in. The doctor said to me, “We won’t send the police. He’s safe. He’s indoors. Don’t [call the police] because you’ll scare him.” We went around first thing the next morning. Darren came too, and my dad thought Darren was my cousin John, who’s lived overseas since he was n
ineteen. Mum came too because I said, “Maybe if he thinks it’s the 1970s he thinks you’re still married.” He didn’t recognise her, of course.’
Lester had been misdiagnosed with depression and was taking too many antidepressants. A two-week stay at Concord Hospital brought up contraindications between the meds; then it turned out that Lester wasn’t suffering from depression. He had dementia.
‘It’s the same face,’ Carolyn explains. ‘Apparently the dementia face, that blankness, is very similar to the depression face. He had a series of tiny strokes and he’d had an operation. That’s what caused his vascular dementia. [His doctor] didn’t even think to explore that.’
Lester was also the type of person who did what his doctor told him. He would never have said, ‘Do I really need all those?’ He would just take the tablets. ‘My dad was very old-fashioned. His mother was from Yorkshire and very superstitious. He was very, very reserved. I didn’t even know him that well because he wouldn’t dream of ever opening up or anything like that. He just wasn’t that type.’
Carolyn feels the lack of emotional connection to her father made it easier. ‘Because when he was in the hospital there was a woman opposite and she was with her father. You could tell that they were incredibly close. She was caring for him in her own home. I’m thinking, “That’s madness. I would never do that – be his nurse.” For me it was a lot easier because we did have that distance so that I could make the decisions. In consultation with him, because he got a lot better, and he ended up living in a retirement village. It was attached to a nursing home.’
Every day Lester would walk from his little unit at a thousand-acre Anglican retirement village to the neighbouring nursing home for lunch. Carolyn says they kept an eye on him there. ‘They rang me one day and said, “It’s time for your father to move into the nursing home because he’s not looking after himself well enough now.”’
It was a difficult move – Lester didn’t want to relinquish his little unit. But within two weeks of moving, his dementia had taken a further hold on him and he had forgotten what he’d left behind.
‘What has it taught you as a person? What does it make you feel in relation to the ageing process?’
‘That it’s all a bit of a gamble. You don’t know what’s going to happen to you. He was perfectly happy. He was really happy.’
In fact, while Valerie’s form of dementia plunged her into darkness, Lester was ‘a lot nicer than he was before’, Carolyn says, no longer the belligerent father he had been to them their whole lives. In its place came gratitude.
At one stage he went missing for two days. He had a UTI (men get them, too). But he hadn’t gone far – he was in the school next door, lying outdoors for two nights. This led to a hospital visit for Lester, then eighty, and more decisions for Carolyn. The emergency room doctor asked her, ‘You don’t want us to take any heroic measures, do you?’
‘I’m going, holy –. I’m ringing my sister in London … In her mind, she’s thinking about booking flights. I go home that night and that’s running through my head – this could be it. The next morning I walked in. He’s sitting up in the ward having breakfast. He said, “Fancy seeing you here.” He’s saying to everybody, “This is my daughter.” I said, “Dad, do you realise what you’ve put us all through?” He was physically unharmed. Just dehydrated.’
When he was younger, Lester was a fit man who jogged and was mindful of his weight. ‘I think he had a period where he smoked and that probably led to him getting the vascular dementia.’
One thing I find particularly touching is how well Carolyn’s parents were cared for in their respective nursing homes.
‘He was looked after well, I must say. When my mother was in the nursing home, they made sure that all of her clothes went together. There were complete outfits. They brought in a hairdresser. Even when she was dying … They rang me and they said, “Your Mum’s having difficulty swallowing.” That was just them being oblique on the phone. I went in and I said, “She’s dying.” They said, “Yes.” I said, “You can send her to hospital.’”
But the nursing home was very good with care. It took a couple of days for Valerie to die. In that time, the staff washed her and changed her nightie. They played hymns at her bedside the entire time. Drugs and oxygen ensured she didn’t suffer in any way. ‘The minister came and prayed beside her, I think at least three times within those couple of days,’ says Carolyn.
She wasn’t there when her mother slipped away, but Carolyn takes some satisfaction in knowing she ‘sent her off in the right way’.
She bursts into tears, her measured tone changing in an instant. ‘I had a really complex relationship with my mother. She was, in a lot of ways, a very cruel woman. But I was making booties for a friend’s daughter the other day and I thought, I can’t remember how much ribbon I’ve got to buy for booties. I can’t ring Mum and ask her. It’s all of those little things.’
You don’t have that person anymore. But for Carolyn and her sister, they no longer have to suffer their mother’s disapproval over their life choices. ‘Which is very freeing, because I don’t have to think about her. I’ve always had to think about her.’
Neither of her parents ever said ‘I love you,’ Carolyn tells me. ‘Mum would do it with my children because they would say it and so she would say it back.’
‘Grandkids are different,’ I say.
‘Yes, very different.’
‘I felt a lot of guilt about my mother’s death. For a long time. Because of the series of decisions from the outset; was I making the right decision? Then I felt relieved. Having to tell people, like having to tell her friends at the village. Because she’s now in a nursing home. For them to be quite incredulous because she had been perfectly fine. Then they went to see her. All these Christians, they said that they all had a prayer to give. They got to give a prayer and they said, “We hope that she doesn’t live long because she wouldn’t like living like this” … That’s the tactlessness sometimes of older people.’
‘You can’t really prepare yourself’
Sadia* was living overseas when her father, Hassan*, became ill and required emergency surgery. He was diagnosed with cancer, but she had no conception of the severity of his condition. Taking leave to travel home to Australia, she intended to be back at her desk at the not-for-profit organisation she worked for within a couple of weeks.
‘And then he had surgery, and it was successful … the tumour that they took out was benign,’ she recalls. But the surgery revealed trouble in another area in his liver. It was cancerous. They waited a month for the assigned oncologist to return from leave; she would be able to provide them with treatment options.
‘Then when we met with the oncologist, she was like, “I can help you wrap up things at work and you know you’ve probably got about eight months … to a year.” Sadia smiles wryly at the memory. ‘We went into that appointment thinking, okay, we’re looking at options, to hearing, “Yep, you’ve got about a year left; I can help you with organising super.” So that was a shock.’
We’re seated opposite each other on the pavement surrounding Lake Burley Griffin in Canberra. In the distance, the large water spout periodically shoots through the air in a refreshing splash. It pierces the occasional moment of quiet reflection, as Sadia unpacks the death of her father four years before to that aggressive cancer in his liver.
A revelatory moment occurred in her father’s reaction. Her very strict father, who had never showed much emotion, cried. He was ‘totally changed’, says Sadia. ‘I remember he was talking to my uncle and my grandfather who live overseas. He used to regularly talk to them on the phone. I think that appointment was on a Friday, maybe? And he was speaking to them on Saturday. And he just totally broke down, and I think the last time I’d seen him cry was when his mum passed away about twenty years ago.’
It felt more real then, she says. ‘It felt like, okay, so this is happening. Because my dad was someone who had – if something went
wrong in my life, he had a solution for me. If it wasn’t A, B or C, he’d find another option to make it happen and to fix things.’
Hassan’s brief emotional breakdown signalled to Sadia a loss of hope: perhaps there weren’t any options. Still, she recalls how her father was clear-headed enough to tell the family to keep his prognosis hidden from Sadia’s younger brother, who was undertaking university exams at the time.
Sadia says nothing specifically offered comfort. Raised in a Muslim family, her life already consisted of daily prayers, fasting during Ramadan and a fairly conservative lifestyle. But she recalls family friends visiting and urging her to start wearing hijab and pray more. ‘I thought, no, I don’t want to do that. I want to do it my way … And these are smart, educated people, so it was really surprising.’
Their suggestion was laced in the notion that prayer would magically fix the situation. ‘But you’ve got to look at it in a practical way as well. My dad was looking at it in a practical way.’ He wasn’t getting chemo or any sort of treatment, only medication to manage his pain.
Sadia did ask of the unseen why this was happening to her family. She even blamed herself for going away from her family. Was the cancer a punishment? ‘Knowing very well it wasn’t my doing. But still questioning that, thinking maybe is it stress that causes liver cancer? Which is not true. Obviously it’s your lifestyle choices over many, many years.
‘I also felt a lot of anger towards not just the situation but towards my dad because it was almost like, you did this to yourself and you did this to us.’
‘How did he do it to himself?’
‘Just his lifestyle choices. He never drank. But … it was fatty liver cancer, which is caused by not eating properly for ten, fifteen years; not exercising. He had Type-2 diabetes. So stuff like that leads to chronic diseases.’
Her father didn’t smoke, either, but, ‘He loved his food,’ she laughs, ‘which is fine. And I remember I spoke to my parents when I was in my early twenties, saying “You need to eat healthy; this is not going to end well.” And it didn’t. So I went through a stage where I was really angry about that.’
