Are Our Parents Living Too Long? Lucinda Holdforth on frailty, dementia and dying well | Club Sandwich

Hello.

I am a brave woman. One reason is because both my parents have died. I could only write this book because they're not with me anymore.

Isn't that amazing?

I could not have written it. While they were alive. There's no question why, because it would have hurt them. It would have seemed too personal. I think that's the main thing. They're a generation that cherish their privacy, and I invade their privacy somewhat. And even though it's enormously loving about them, it's also very honest about those complex feelings we all have when we're caring for our parents and trying to live our lives as well. So, yeah, I couldn't do that. And in fact, I realized just today that after mum died in 2022, this is my second book. This is my second book since then. So my sense of creative liberty, my sense of my personhood and capability has just expanded enormously because they're no longer with me. And that's just. That's my experience as well as missing them, feeling guilty, feeling love, feeling kind of joy, remembering things, good things. So it's a big mix up of stuff.

I am. There was an excerpt in the Guardian, and that was specifically about this question of caring for your parents and the toll that it takes on you, even if you love them. And I wrote very honestly, I tried to write very honestly about my own feelings about it and to say truthfully that my life is better because they're no longer with me. And I got such. I was shocked. You know, I've received messages from Hamburg and from London and from America, from women, saying, you are describing my life. Literally, you are describing my Life. And I'm 52 and I feel like this is my last chance and I'm not going to have that chance because I think my mother could live for another 15 years.

To live my life. And the line that I wrote in the book, and it was really picked up everywhere, was in the book I wrote at 59, I was at last an orphan. And so many women wrote and said, I would like to be an orphan because I'm too. This is too long to wait for. For that transition. And, you know, part of my book is around this question of generational change and handover. And I think it's very hard for us to grow up properly as long as our parents are alive. We're always children for that period.

Our parents are living for a lot longer.

That's absolutely right. I mean, yes, I've looked at. And not just that this longevity trend is only going to continue. I looked into that, you know, I was trying to figure out what it was. And in Australia, our longevity is due to a number of things. After the Second World War, so in 1968, you know, someone would probably live till 70 people retired and died a minute later, basically. So what happened to make this longevity phenomenon happen? And it was peace and prosperity. First of all, you're not sending young men off to war. But also medical health, medical science, enormous advances underway that have happened and that are still happening in genetics in all kinds of areas and public health. So when I watched RFK Jr getting rid of vaccinations and things in America, I think you are crazy. All of us grew up with a whole public, public health environment, with Medicare, the greatest health system in the world. So we Australians are all in the top 10 in the world for longevity easily now. And my parents were born in 1929 and 1932 and they wouldn't have expected to live till 80 in a fit and they both live till 90.

Well, the other factor was when you think, oh, well, we were in, you know, the top 10 of the world for longevity. And that sounds fantastic. You know, it's a national achievement at one level. And then you discover that 1 in 12 Australians over the age of 65 has dementia and that we are second only to the US for that number of years spent with chronic disease and disability, which is an average of 12 years. 12 years. And that's where the sandwiched generation of women come in. That's an enormously long time, whether it's falls, you know, those intermittent falls, whether it's cancers that cured dad. I've got a list in the book that goes on for sort of half a page of things that my father had. He had water on the brain, he had various kinds of cancer, he had falls. And our medical the irony is our medical system is so good, it can keep people alive far longer than once would have happened. And there's also a culture in our medical. In medical circles still of life at any cost. Not living well and dying well.

Yes, he was the first one to sort of. You see the big steep decline. So, look, it's the same story that all of your club will know. You know, we were living. I had the peak of my career responsibilities, and I'm the breadwinner, various work things. And then dad would have some kind of medical incident. We'd have to drive from inner city Sydney to Avalon in the Northern beaches. Mum, very soon after dad got frail, wouldn't ring an ambulance herself. So what would happen is I would get a call and she'd say, hello, darling. And I'd say, hi, Mum, what's happening? And she'd say, your father's in the bathroom. I said, okay, how's that? And she said, well, I don't know. Cause he's on the floor. And I said, have you. Can you go in and just see if? He said. She said, well, I can't because his head's in the door. I said, okay, Mum, let's hang up and I'll ring the ambulance. And then of course, we had to rocket up to the hospital then to go and get Mum and then come back. That's just one example. There will be so many others. And it's stressful and you feel sick and you feel inadequate because you can't navigate the system well, your heart's just

You're so stressed. And we've all been there.

You're all there. And then I think the other part of it with Mum and Dad was finally we found. So my brother, my husband and I went around trying to find a nice aged care facility near us so we could be there for them. And of course, they hated it as soon as they moved in. But the other part of it all was that just enormous administrative burden. So they were there, but your Job as an advocate, as a kind of bureaucrat for the. You know, all the paperwork continued. And then, of course, you're trying to be loving and caring and just spend time. Spend pleasant time.

Yeah. Not just bossing.

Yeah. And the love sort of friend, especially as I was with my mother. So when you're in that, it feels as though it will never end. It did feel like that to me, and it wasn't even that hard. You know, I don't have kids, so I had it easy. Compared to many of the women that are listening to you now.

And, you know, the other thing I was thinking about was it's not just about whether you have a big job or a small job. In fact, that's kind of the least of it. It's just the having your own private life. You're having your own life to yourself. It's hard to explain, but it was definitely for me, this feeling that I could never really just explore who I was fully, fully, independently, whilst I was responsible for them. It sounds strange, I know, and I didn't exactly know it at the time of those final few terrible years, but afterwards I was like, oh, it's not just that I can work hard or I can write another book. It's that I can somehow express myself fully in a way that I hadn't before.

It might well not be other people. Right.

Yes. And it's multifarious, you know, ailments and illnesses and issues. And I think it's very much complicated by this modern scourge of dementia. And I don't. I still haven't found anyone that's explained to me why we have this epidemic. It seems.

Fade away, or in my father's case, become aggro, paranoid. So, you know, and yeah, I think that's. That makes it so difficult and I think it makes. What it really made me think is how sometimes I have flashbacks and it's so harrowing, actually. A flashback of dad accusing my husband of trying to steal his car. And I don't want to remember him like that. I want to remember my other actually delightfully good natured, cheerful, beautiful father. But it really makes me think I don't want to be. If that happens to me, I don't want to be remembered like that. And I would like to have the choice not to be remembered.

And of course, when you've got your spouse who's trying to. Is doing his absolute best, as so many men are, that's also very confronting and it just adds another layer of stress on the whole sort of situation. It's different with my mother and she was very peaceful and she was really ready to go at the end and, you know, that was quite a different experience and a very loving experience. In her final days,

No.

They rage against the dying of the light, don't they? They really do.

status more or I don't know. But it's. With dad, it was the car. It was so weird. Oh, my God, the car, the car. And, you know, in the end, we've got a system now which is very anxious about ageism. And so dad was driving for years longer than he should have been. And honestly, he would go on the road and we'd Think, oh, please, God, let him not have killed anyone or crashed into the front of a chemist's.

And I know other people that have that too. I even know of one guy who rang and dobbed his father into the police because he was so worried. And that's because we have a very strong anti ageism culture. And the way it works isn't that your driver's license is taken off you automatically at a certain age, but that you can perhaps apply to have it back.

You do have to do tests. But dad did several tests that he should not have passed.

Absolutely.

Yeah, yeah. And there's. I know there is that argument about P platers, but there is a point at which common sense and social benefit has to override. You know, I do think it should be that the licenses are taken away and then can people apply? Because I think for driving instructors and testers, it's much harder to say, look, you're not going to get back in, than it is to say you're stopped from driving. That's a psychological, human thing. So I think that's much easier. And if we were to start looking at young people, I mean, who are the dangerous drivers? They're young men, it's not young women. So we're discriminating there against young women drivers, in fact, who may be perfectly fine on the road. So we make discrimination all the time in the sense of trying to look at what the broader public good is and public safety.

Yeah, I would say that that may be a very legitimate perception. But the reality is our entire economy is now skewed to old people and wealthy people who are the same people. So I grew up. Maybe you did too. Free university. You could rent a house. We could buy a house. We have now an entire society skewed to the benefit of old people. That is the broader structural discrimination.

Yes, because they have home ownership. Because things like superannuation, subsidies. I'll tell you the other figure. It's not just in the. There's the tax system is one area. I think the government has talked about an intergenerational lens and I think they are going to make some moves. But 40% of future additional spending by the government over the years till 2063 is going to go on aging. So that's aged care, end of life care, pensions, all of that. So you have an entire society now that is a massive burden. And when you think about that, when I did an interview the other day, someone rang up and said, well, you know, you're very rude about old people and you know, what about all the childcare we do for free? And I saw an article the other day talking about that. But that ignores the fact that for older people, their alternative is leisure. For younger people, they are on, they are struggling along. There isn't enough affordable childcare. So that money that's going to prop up older Australians is not going to things like childcare and those other services for women, education and so on.

Of course, absolutely. And there's no argument about that. And that's why that enormous amount of government expenditure is going to go on. That the Question for me as an individual is, do I want to hang on and on.

I have.

I'm 63.

I got the free education and other things like government departments would have internships. You know, big, big cohorts of young people would come to Canberra. I went to Canberra. The ABC would. Had all those things. It was just a much more graduated, beautiful system for getting young people to the next level. And I know so many women in this generation whose kids sort of finish university and then they're on their own and they're working at Dan Murphy's with some amazing degree because there's no kind of system for that. So, yeah, I think we were really lucky. And a period of prosperity and when we got jobs, we got jobs that had, you know, benefits, not just gig economy.

There is, exactly. And of course, of course, I, you know, as an older woman, I'm certainly not promoting ageism. I'm simply saying, let's get it into perspective.

Yep.

Yes. Interesting. So, in fact, my health has been very good for years. So I had triple negative breast cancer in 2000, so I was 45.

Yeah, they were around and then. And. And really they didn't have that much to do with me at that time. So they weren't caring for me. I was sort of managing myself with my husband and friends and so on and living in the city and they were living outside.

And oh, gosh, for women that are going through their own health problems as well, what a nightmare.

It's a nightmare.

And then some years later I developed a serious heart condition. So I've had two stents put in my heart and people theory, the doctors said they thought it could have been because of the damage the chemo did to my heart because it was very severe. And yeah, and then I had. That was all very hard and painful and trying to earn a living and work and trying to write and, you know, just exactly what every other woman is like trying to express myself and have my own life and do all the other stuff. So it was hard, but I was lucky. You know, I have good health now and as you say, I am absolutely a product of a first class medical system and I did it all on Medicare. I didn't have private health.

Yes, I did. And it's very simple for me, which is I would like to, I think there should be medically assisted dying available for people and I wouldn't want to say what age exactly, but I think there should be a recognition that once you near the end of your, once you're 80, medical assistant dying isn't the sort of scary, you know, dangerous phenomenon that it is when someone's 25. You know, it's your. Towards the end of your life. People talk about it, there's a lot of work being done, people talking about a completed life and when you feel that you've completed your life and for some people, that my father would have lived forever if he could. My mother was done, she was ready to go and I think she hated being in that state and I think that was a very sad few years for her. And for me, I think I'll be one of those people that thinks, gosh, if I've got, especially if I've got dementia and there's really no mechanism now because once you've got dementia you can't ask, you're not allowed to make the decision and that's just got to change.

you know, but it's not everyone that has that. So there's a great guy called Daniel Kahneman, a very eminent American intellectual. He wrote that book thinking fast and slow. And he'd nursed his wife, who' had dementia, Alzheimer's, in fact, for years. And it was obviously extremely loving for him and harrowing for him. And when he turned 90, to the shock and amazement of all his friends, he just caught a plane to Switzerland and went to one of those clinics and he said, you know, I've had my life, I'm ready to go. And the interesting thing is he also came up with this notion called peak end experience, which means that we often judge the value of an experience by how it ends. And when I think about the shape of my life, I've been enormously lucky if I think about the shape of my life. For me, I don't want people to remember me in a completely debilitated state at the end. So for me, I think I would. I may not. If it was an option. I'd love to have the option, though, because I think you become so powerless in those final years. It's so lonely and you're so powerless that if you knew that if you really needed it and wanted it, you had the option to leave, to give up your life, I think that would make a lot of people actually feel better. And I suspect most people wouldn't use it. And that's probably me.

And the powerlessness is so awful when you've run your whole life and modern living, we are also responsible for a million things. We have choice, we're expected to take charge. And yet at this end of your life, you're suddenly kind of at the mercy of a medical system which is very benevolent in one way, but highly controlling and interventionist in another.

I did. I had to. Well, this was very interesting because I know that there's efforts made to address this problem of what happens to older Australians, and one of them is the advance care directive. And so what a great idea. We Filled out those forms. Mum and dad had them both. Mum and dad separately were in their aged care home and fell over. And on each occasion they went to hospital. I rushed to the hospital and there's no advance care directive with them. The doctors are there ready to. There was no mention of an advance. Of course I was beside myself, so I didn't even mention it. It was only later I thought, what happened to the advance care director?

You can't.

And you feel like, you feel. Yeah, you're devastated. And in the case of dad, it was quite clear he'd had a fall. It was his head, he was so frail. And I, and I, you know, I think at one point I said, is he, in fact maybe it was with mum. And I said, is she going to die? And he just looked at me like I just said something so terrible and wrong.

Flinched.

Yeah, 90. And he said to me in this very stern, teacherly way, well, it is an end of life event. It's like, oh, okay, if I'd said end of life event, would that have been okay?

And especially with my mother, who was plain spoken, you know, she would have hated that. You know, there's an old English word, can't, which means just that kind of, you know, euphemistic language. And you think, I don't need that from a doctor. I think, I don't think my mother deserved that either. Yeah.

No.

Imprecise. And it's especially the case, I think, because, well, certainly my parents generation were brought up doctors were gods. When doctors said, you know, you do this, you don't say no.

lot of them are fantastic. They think that and when I was going through my health things, I mean, once you're in it, I agree with you. It is like a conveyor belt and you feel. You become quite passive because you feel very much in their hands and you also. You want them to like you. You don't want to question. You know, there's a whole relationship that's complex in that, and certainly with Mum and Dad and they were passive and they would just do what the doctor told them. But what I think's different for us is, well, why can't we have more agency in this process for ourselves?

He said that in 2020, 80% of the world's problems are caused by. By old men hanging on, fearing death and insignificance, and they won't let go. Hello. Look at the world, Right?

Look at the world. It's just horrifying.

Really?

Really. Well, there's a few. There's Putin presidency, Benjamin Netanyahu in Israel. He's 74. They're all in their 70s. Trump, obviously, is the uber example of this. Now, fear of death.

Or.

Yeah, as Barack Obama said, insignificance. I thought that was really interesting, actually. Power. I think the notion of relinquishing power is very difficult because those guys.

No, not at all.

I think there's a couple of things. I think the first thing is, you know, brilliant doctors like Dr. Atul Gawande, and in. In Australia, there are some really good doctors as well, talking about, let's move away from life at all costs, because the medical system can keep you alive indefinitely and move to an ethos of live well and die well too. And I think that's the gap. That's the big gap for me. With my parents, I felt as though the medical profession had sort of just turned into this conveyor. The conveyor belt service over just massively servicing. And I think, I don't think we're going to get that conversation against unless people like you lead this conversation, actually, because we'll just continue on as we are. So the first thing is have that conversation. The medical profession in its kind of entirety, the health system needs to kind of focus on this as well. I think we do need. I think we're going to have to look at some of these other issues around choice. But as it's true, I'm not here to be an activist or a crusader. I'm just here and I deliberately wrote this book in a way that was provocative and that was very truthful and honest. I thought, well, I can say things that other women particularly can't say, and that's something useful I can do. And when you look at all the data and all the statistics and where this is going, it's an economic necessity, it's a social necessity, and it's about a compassionate but honest society looking at our challenges with a clear mind and making decisions about the way ahead.

Thanks so much, Sarah.