Fridays with my Folks

by Amal Awad

  ‘But,’ Delma continues, ‘as the doctor said, he’s never had a patient who’s had some regular colonoscopies develop bowel cancer, so, yeah, gotta go with that. Had Mum not been diagnosed, we may have gone further and had a polyp removed.’

  Some believe that there is always something good to be found in the darkness of life. Wasn’t it Leonard Cohen who penned the lyric about a crack in everything being how the light gets in?

  Despite the late-age diagnosis, Delma’s mother surprised doctors with how quickly she ‘came back’, two years shy of eighty. ‘She was again still independent, but … she never really got back to being quite as energetic as she was before. But, again, cognitively all fine and it was really just a matter of taking care of the things she couldn’t do on her own. Read, being able to drive and things like that.’

  Delma, living in another city, spent school holidays visiting her mother with her daughter, Tessa, or bringing her mother and Owen on holidays with them. But then her mother needed the second hip done. She was nearly eighty-four. ‘I see that as being the beginning of the decline, the real decline. After yet another general anaesthetic for the hip operation, she had problems with her circulation, would get abscesses. So she was literally on antibiotics all of four years. And that’s when all the changes really started happening. This person who was completely capable, she forgot how to cook, she forgot how to do things, and obviously still had her intellectually disabled son living with her; and the very thought of removing him from her home would cause such pain.’

  Delma’s mother desperately didn’t want to go into a nursing home. ‘And we really tried to keep her at home. We got home care eventually, when she did get the diagnosis with Alzheimer’s dementia, which was only last year. And it wasn’t too bad. You know, it really wasn’t too bad. But six months later you couldn’t recognise her.’

  They knew there was dementia, but by the time they met with a geriatrician and went through the procedures, twelve months had passed since they had recognised the need for an assessment. Six months after that there was very little of Margaret left. ‘It really was quite rampant.’

  The father of Delma’s partner, Andrew, was diagnosed with dementia in 2011, but Andrew’s father experienced a steady decline. In about six months Delma’s mother went through everything Andrew’s father had experienced over several years.

  ‘That was really hard. So obviously then we had to do something with Owen. So we got him into assisted housing, which isn’t a good thing, it’s a great thing. He’s independent and having a bit of social life. He was, after all, living the life of an elderly man – he’s sixty-four now, but he was living the life of an eighty-odd-year-old. So that’s been good for him.’

  In the nursing home, Delma’s mother changed further. In the last six months of her life, Delma recalls a very angry person, someone who wasn’t pleasant to be around. But the one thing her mother clung to was her memory of Owen. She would ask anyone she recognised about him. ‘And if he walked into the room, beaming smile, always recognised him, never ever failed to recognise Owen.’

  ‘That’s kind of beautiful, isn’t it?’

  ‘Yeah, it was … She’d be in the middle of screaming at the staff that they were stealing from her and doing horrible things, and Owen would walk in and there would be this big beaming smile and, “How are you?” Then she’d go back to screaming at the staff. So it was quite funny [but] it was awful to watch. It was really difficult because you couldn’t communicate with the person that she was because she just wasn’t there anymore. She knew she hated being in the nursing home. She literally locked herself in her room, she wouldn’t go out and communicate. Whereas Mum had been this really social person who loved having a chat and a cup of coffee. But she just would not leave her room.’

  The nursing home was, for Delma, ‘a horrible choice to make’, but a necessary one. They had tried home care and it wasn’t enough; it was becoming dangerous. ‘My mum would get up at night and wander. The last night in the house she almost burned the house down. She, for some reason or other, decided to put a pan of hot water on the stove and that boiled dry. Luckily Owen was there and he turned it off. So that was it – she could not stay in the house any longer. She was having falls and it just became impossible.’

  What Delma describes is common among people who live with someone who has dementia and requires high-level care. One woman, Stephanie*, deals with two parents who have serious health conditions requiring 24/7 care – a father with dementia, his mind and memories lost; a mother with a physical ailment that sometimes requires oxygen. Her father adores her mother, she told me. But his state of dementia means that he doesn’t understand or can’t remember that his wife is unwell, that she can’t simply get up and do things as she used to.

  Stephanie’s father is not in a home; he’s still able to function, but only in the short-term bursts so notable in dementia patients. A matinee at the theatre invites excitement, but it’s forgotten a few hours later.

  The same day I spoke to Delma, I met with Dr Llewellyn-Jones, who says simple adjustments can make a monumental difference to a dementia patient. ‘I always recommend that the family get photos [of the patient] when they were well, and put them around their room,’ he told me. ‘I want to show that this is still a person, even though they might be almost non-communicative now; they were once a mum or a dad and they had a job and they loved horse riding or … sailing. They’re not a thing.’

  ‘I absolutely agree with that,’ says Delma. ‘Mum’s room was full of photos. And I’ll be honest, most of the photos were of a younger her … my father when he was younger. Because you know with dementia they’re far more likely to remember when they were young.’ They remember snatches of the past, of who they were.

  ‘It is that one-size-fits-all problem, where everyone with dementia is treated like a child and not as an individual. And I can make no complaints about the staff where Mum was. They were terrific. But they were very limited in what they could do.’

  Delma taps into another force at play with nursing homes: no matter how well-intentioned the workers are, ‘it’s a one-size-fits-all’. ‘They’re all infantilised. And it’s really hard. I don’t know how you fix that problem. Obviously the wages for the carers are low. Certainly with the home care the problem was … it wasn’t that they didn’t try, but they were on very, very strict time limits. They had to do everything and be out and off to the next place. So nothing was ever done properly. No matter how much they cared they just didn’t have the time.’

  Dr Llewellyn-Jones has worked with older people for more than thirty years. He decided to take up the career after seeing first-hand the appalling conditions in some nursing homes while he was at medical school. He described the problem in a similar way – that for all the best intentions of staff at a nursing home, often they are not properly trained, they are not paid well, and the residents in these homes are not treated like individuals. ‘[The nursing homes I worked in while I was at medical school were] highly institutional. People were often treated as things rather than people. And I thought there must be a better way to provide care for our older people.’

  There are still problems, he says, but the buildings are mostly a lot nicer, and certain standards have improved –things like having your own room and an ensuite. ‘When I started working in aged care, it was like these big wards where you might have twenty, sometimes thirty people in a hospital-style ward with no privacy and no outdoor areas.’

  But what constitutes a good quality of life?

  ‘You can go into one nursing home, where the care is very basic and the people with dementia are given very little stimulation, provided very institutional care. Their basic needs are met – they’re bathed and they’re dressed and they’re provided with nourishment, but that’s kind of it,’ Dr Llewellyn-Jones notes. ‘And they’ll be pretty depressed and miserable people. You can go into another nursing home, where there’s a very high level of dementia literacy, and people are d
oing everything they can to provide those individuals with the best quality of life. And, you know, those people have a far better quality of life than the other group.’

  It’s an example he gives to illustrate how we, as a society, approach these degenerative illnesses of late life. ‘If we feel that it’s important to value and care for the most vulnerable in our society, and put resources towards that, then those people, or even people with pretty severe cognitive problems, can still have a good quality of life. If, however, that’s not one of our core values, and you don’t put those resources in, well then, those vulnerable people won’t have a good quality of life.’

  Problems with nursing home models are increasingly well-documented. In Dear Life Karen Hitchcock speaks of the loss of a person’s liveliness when confined to a small life and few pleasures; Atul Gawande in Being Mortal extensively documents the highs and lows of aged care options, showcasing how people thrive under the right conditions. He speaks movingly of the loss of autonomy:

  The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world – to make choices and sustain connections to others according to their own priorities.

  In essence, being treated as a human being, with complexity, emotion, purpose and life, should not be negotiable. Our bodies can fail us, our minds may quickly follow, and preventing a downslide of both is essential to living well, or simply better than you think your old age might allow. Gawande and Hitchcock both consider the impact of giving elderly people a cause beyond themselves, such as having a pet.

  However, while Hitchcock talks about people not wishing to go into nursing homes, a geriatrician I spoke to attempted to temper the criticism of such places a little. Professor Lindley believes a poor reputation precedes aged care facilities. Of all the things he says, his cautionary words around nursing homes stand out: ‘The one thing I really think you should avoid is, “I will never put you in a nursing home, Mum.” That’s a really bad thing to do because a lot of people will need nursing care at the end of their life, and if you’ve made that promise to your parents it causes all sorts of difficulties.’

  As a geriatrician, he’s seen lots of examples where aged care has been ‘a fantastic solution for a difficult problem’. People are comfortable when they’re getting the care they require, he says. ‘So if you do require twenty-four-hour nursing care, you could be quite uncomfortable in the care of your family, who are not doing it very well, and you can be quite comfortable in a nursing home. And therefore that quality time with your family when they visit is not dominated by the caring role, whereas it would be if they were struggling to be looked after at home.’

  I put forward the common concerns I have read or heard about. That nursing homes and aged care facilities do not cater to the individual. That there is a lack of connection –between residents themselves, and residents and overworked, under-trained staff. That there is little to keep the residents engaged, entertained, vital. ‘God’s waiting room’ and all that.

  ‘We can do things better, I’m sure. I’ve read in the lay press, not in the scientific press, about these fantastic trials in other countries,’ says Professor Lindley. He cites a recent example in the Netherlands, where student accommodation and aged care are co-located; as rent, students do some work in the facility. ‘One of the things that predicts healthy ageing is community connectiveness. And I think having cross-generational friends and carers is fantastically good because it means that when your own cohorts are dying off you’re not losing all your friends. If you’ve got friends in the generation beneath you and beneath them, they’re going to be around, they’re still around when you go yourself.’

  Diverging from his professional to his personal feelings, Professor Lindley airs his dislike of retirement villages, ‘where everyone’s old and frail and complaining about their next medical appointment’, because he doesn’t believe they’re as connected with the community as they could be.

  ‘I think the students in the aged care facility is a fantastic idea. I think having childcare facilities and aged care facilities side by side is a fantastic idea, although it might not be so good in flu season, but … I think we need to be far more imaginative about how we look after older people and keep them in a more community style.’

  There was humour in the nursing home experience, though, says Delma. ‘Every time I walked into Mum’s nursing home I would look at [the residents] sitting there, all lined up looking out the windows into the garden in their recliners that were lined up there. And I would always think of Spike Milligan and his description of Woy Woy, where his mother lived for many years in New South Wales. He described it as the only above-ground cemetery in the world. So every time I walked in there I would have a little chuckle because Spike Milligan would have just died laughing, I can assure you.’

  Another woman I met recently divulged her own perspective on dementia when she discovered I was writing a book about ageing and illness.

  ‘Is there humour in it?’ she said, her expression thoughtful. For Mary*, there was. Her father had dementia and resided in a nursing home until his death. She says he was the brutish type when he was unwell – aggressive and mean. One day her brother-in-law arrived to pick him up for an outing. He arrived to a chaotic scene: Mary’s father standing over another old man, hitting him with his walker and yelling accusations.

  When Mary’s brother-in-law intervened with a hello, the change was instant. Suddenly her irate father was bubbly and charming. She found this hilarious – indeed, her story shows the importance of seeing the humour in the potentially traumatic.

  Sophie*, the nurse, had her first introduction to a dementia ward during an aged care practical allocation when she was studying. ‘The word “hopeless” is probably a bit too extreme, but these patients … you had to have a sense of humour to work there,’ she told me. ‘It’s the only way because these patients – you’re telling them something and they’re coming back twenty seconds later and they’ve already forgotten … I think you need a sense of humour in nursing. Definitely in aged care and the dementia wards. That’s hard work. That is really hard work.’

  But again, what to do with these ailing patients who can’t look after themselves, says Delma. ‘So you wheel them out, you put them in front of this big window to look at a garden and you leave them there for hours and hours and hours.’

  Dr Llewellyn-Jones also recalls scenes like this. ‘In the bad old days when I was a medical student, we were told to get people up, and they’d be wheeled out to the so-called garden area, which was just concrete, and no plants or flowers, and they’d be tied into their chairs, set there for a regulation hour or so, and then taken back somewhere else,’ he explains. ‘I think things have changed a lot for the better in that way.’

  He accepts there may have been nursing homes with better facilities. ‘Nevertheless, you can still miss out on the care you need even if you’re staying in a five-star luxury nursing home, because it’s not just the environment, the built environment, that’s important. It’s [that] older people need lots of time and human contact, and if the places aren’t staffed well enough then the residents aren’t going to get the time they need.’

  It’s not that he’s against nursing homes. ‘There are some very good ones where the care is excellent. But they don’t suit everyone. There should be a greater number of smaller facilities providing personalised, home-like accommodation.’

  It does seem that as a society we don’t know how to deal with our ageing population. Older people often talk about feeling invisible. They’re made to feel invisible. We don’t esteem the elderly, and we certainly don’t, as young people, want to think about getting old. ‘Believe me, when you’re in there and you’re caring
for them, it brings your mortality into you, it’s staring you in the face,’ says Delma. ‘You realise, this could very easily be me in the not-too-distant future. It’s confronting. But, like I said, there is humour in it, too. I think a lot more humour could go places.’

  ‘The other thing is animals. They all respond to animals. One of the nurses brought in a little puppy dog and it was kept around the nurses’ station and she used to walk around with it now and again, and they all loved that puppy. Which is crazy because it was a smelly, horrible thing. But they all loved it. And children. You know, you want to see their eyes light up around a young child. A toddler walks in and every one of those women literally … you see them transform before your eyes.’

  I’m reminded that Sophie said the same thing about babies and geriatric patients in hospitals. ‘So actually just giving them opportunities to engage?’

  ‘It’s absolutely God’s waiting room … These people are not going to get better, so we’ll just make them comfortable and we’ll wait.’

  ‘And that’s something we can change. We absolutely can change it,’ I add.

  ‘They do need to be made more than just comfortable. They need to be made to feel as though they belong. And with Mum that was not easy.’

  Delma’s mother didn’t experience theft or verbal abuse, but she had delusions in which people were coming into her room and stealing things. ‘So I don’t know how you improve that. But again there’s got to be a way. A puppy dog. Children coming to visit now and again.’

  Delma’s story finishes in a swell of pathos. She laments not seeing her mother in the final few days of her life: she was moving house, her brother had the flu. ‘We weren’t there for those final couple of days. I hate that. I just hate that.’

  ‘You don’t know what’s going to happen to you’