A PRACTICAL GUIDE TO PARENTING OUR AGING PARENTS

Jean Kittson is an author, public speaker, actor, comedian and scriptwriter for stage, television, theatre and radio. Jean is also the Patron of Palliative Care Nurses Australia as well as a founding director of the National Cord Blood Bank, the inaugural chair of the Australian Gynaecological Cancer Foundation and a founding ambassador for Ovarian Cancer Australia.
Jean Kittson’s first book, You’re Still Hot To Me, was a fact-filled conversation starter about menopause. In 2020, Jean Kittson’s second book We Need to Talk About Mum and Dad tackled  the problems of aged care for families. On 27 May 2020, Jean Kittson filmed a Youtube broadcast for The Sydney Institute. Her paper from that talk follows.

A PRACTICAL GUIDE TO PARENTING OUR AGING PARENTS

JEAN KITTSON

Thank you Gerard and good afternoon. It’s a great pleasure to be here and I’d like to thank The Sydney Institute for inviting me to speak about my new book. I wrote We Need to Talk About Mum and Dad because I’ve been trying to help my parents as they age for some years, ever since they became closer to 90 rather than 80. And our journey together to find the right things to do to help them, the best place to live, the most appropriate care and assistance – the most suitable medical attention – was difficult and confusing and complicated. And it was fraught with frustration and fear. There seemed a lot more pain than gain. I thought it was just us, until I realised it wasn’t. I go through it all again in my book so that you won’t have to.

My family are not particularly good at talking about difficult subjects like sickness and dying and death. And I assumed that it was this sort reluctance to talk to each other that caused their life to seem to be always teetering between managing and disaster, between chaos and control. But while I was touring and talking about my earlier book, You’re Still Hot to Me, The Joys of Menopause, I met a lot of other women my own age. They were going through menopause, they had children still at home, they were still working full-time and they were trying to do the best by their aging parents. It was their elderly loved ones and how to help them that was causing them their most sleepless nights. Not the hot flushes or the HSC. I thought why is aging so difficult? Why is it so fraught? Why are so many of our elderly loved ones so unhappy? And why are so many of our families so anguished about our parents? Why is there so much grief and anxiety and remorse and regret and guilt? You know, has it always been like this?

We all think we know what to do when the time comes and there are many times that do come between aging and frailty and helplessness and death. But we don’t really know. It’s always difficult and love is not enough. We really all need to know what to do. We need to know what to say even. But the truth is that while we may banter about aging, it is quite likely that most of us don’t actually know what that means. What happens when we become parents of our parents? What kind of help will they need? How can we help them without making them feel helpless? How can we avoid treating them as if they are helpless? And the problems are not just practical difficulties of working out what it is they need and then sourcing it and putting it in place. The unpredictable problem is when your parents arc up and constantly resist what they obviously need. Sometimes it feels as if you are forcing your parents to look after themselves.

For example, my parents have not once in their collective of 185 years gone to a doctor just for a check-up. They need to have an actual arrow through their leg and a boa constrictor wrapped around the other one before they see a doctor. People like my dad believe that if you fall into the hands of doctors, they will find something wrong with you, the way unscrupulous mechanics do when you take in your car to them. And, if there is something wrong, he would rather not know, even if the diagnosis could improve his well-being.

A few years ago, my dad was diagnosed with a heart condition. I went to see them and my mum said, “Oh your dad has to have a balloon put up the artery in his groin and then it will go further up and open up the arteries further up in his body.” I said, “Oh right, Dad, okay. Well let me take you to the specialist.” Dad said, “Okay, I’ll let you know”. I said, “Well, when’s your appointment?” He said, “I’ll let you know”.

And then a month passed and I saw Dad again. I said “So, Dad, when’s your appointment.” He said, “It’s all right. You know, it’s in a month or so.” Well, when exactly is it? He said, “I’ll handle it”. I went, “Okay.” Then I decided to ring the specialist to ask when my dad’s appointment was. The receptionist said, “Oh, Roy? No, his friend Bert rang and said that he was all better now and he cancelled the appointment.”

My father has an invisible friend, a new one, and he’s very cunning. My first tip is that we need to talk about Mum and Dad with Mum and Dad in the room and at the round table. You’ve got to put them at the centre of all conversations and listen to them. Ask your parents what they want, what they hoped for and what are their fears. It may sound obvious that many of us make decisions about our parents without involving them, even if they’re sitting in the same room. Simply because we’ve raised children or pets or we’ve run a chain of major florists and we think we really are very good problem solvers. And we don’t want to bother Mum and Dad. We don’t want to bother them about them. Now, don’t think like this or they will form a resistance movement and go to see Bert. And please keep in mind that all my advice in the book comes from me not having the book to give me advice. I have made so many mistakes.

One of the first things we wanted our parents to do was consider moving from the family home. This is how it happened. My mum, legally blind, and Dad, two new hips and a couple of health issues which are unresolved because he won’t let bloody doctors anywhere near him, were still holding themselves together. But their house wasn’t. It had an upstairs balcony which was held on by two loose bricks and was ready to plummet into their little pool because Dad was either fixing one or cleaning the other or both. And there were a few things they could simply not do anymore. And riding an avalanche was one of them.

So, naturally, the three devoted children came up with three completely different solutions to the challenges of ageing. Plan A was my sister’s. Her plan was that Mum and Dad should remain at home for as long as possible with home help for cleaning and shopping and health and regular visits from us to make sure they were coping mentally and physically. Plan B was provided by my brother who lives in Melbourne. He had barely arrived before Mum and Dad were bundled into his car and taken on a little drive to look at some attractive retirement villages. Plan C was mine. This is where we turn the spacious old garage cave under the house into a delightful, open plan apartment or granny flat, which is easily the size of their present living room so that Mum and Dad give away nine tenths of their possessions and furniture and move in with us.

As you will have guessed these well-meaning solutions were met with a mixed response, best expressed by my father saying bluntly, “When did you children start taking an interest in us?” Which is actually and factually unfair. But I did understand his tone because every time the family tried to objectively plan what was best and laid out the options, it sounded more and more like an ultimatum. You know, put down the splatter gun, keep your hands where I can see them and move into the spare room now.

If your parents are reluctant to discuss important topics, important documents, important medical considerations, important financial questions, you need to constantly reassure them that it will give them more control at this stage of their lives not less. It really will. They will have everything in place and they will know where everything is and how everything works. Mind you, you have to get in early because as my mum says, the last five years of your life are like the first five years, everything changes so quickly. And she hasn’t even seen Benjamin Button. She said that ten years ago I might add. And still counting. So please seize the day.

Every time I tried to help my parents it would take me months to find out what was needed and then months to find out how to access the right help and then months to put it in place. In the meantime, we had all got to another stage and discovered another problem that needed a whole new set of solutions. I started worrying about my parents when Dad was about 75, which sounds quite young to me now. That was about 20 years ago. In that time, between them, they had had a broken hip, a broken shoulder, a broken femur, two strokes, prostate cancer, two heart events, various skin cancers and chronic wounds. And both have lost their sight. My mother is legally blind, and my father uses a jeweller’s loupe to peel the potatoes. True.

They have gone from being mobile, and driving, to both of them pushing frames. They have been to hospitals and rehabs and transition care and seen specialists and GPs and made the huge decision to sell the family home and move into a unit in a retirement village. They started with one hour cleaning a week and now they’re on home care packages of a level two and a level three. They’ve got about twelve hours of services a week which include cleaning and shopping and cooking and personal care. They have also had to put in place enduring powers of attorney, enduring guardianships, a will and an advanced care directive.

These are big changes at any age. It has meant changing the whole of their living arrangements and we have to help them manage that, whether they like it or we like it or not. We have to help the older people in our lives, our parents, our grandparents, aunts, uncles and any other elders within the radius of our family, our community and our affections. Time and again, in all the interviews I did with people, partners, offspring and professionals, the common cry was I pity the older person who doesn’t have an advocate, who doesn’t have kids or a trusted person to look after them.

To quote one person’s informed outburst:

God, I mean, to try to have a go at the system on your own when you are sick and old. I think about that all the time. If an elderly person tried to manage the systems and bureaucracies and legalities, Centrelink, the medical system, moving into aged care, applying for home care packages, ACAT, it’s a whole other language. If they tried to do any of that themselves, they would have no chance. No chance at all.

You may very well be their number one essential service, because the world is impatient with old people. This includes all the departments and organisations for old people. Very often you are their only defence. The last time my mother was transferred into rehab after a broken hip, the people in the rehab were surprised when she told them she couldn’t walk. My mother said: “The hospital misled them. They said I could walk. Anything to get rid of the rubbish. And I am rubbish.”

How has this come about? Is it because ageing is now often seen as a problem? It’s a problem for the community and families, apparently. It is no longer just a part of the natural order of things. We separate our elders from ourselves and our communities. We shift them to places where they can be with each other and not with us so we can pop in from time to time when we have time and we outsource their care. Now, this may merely be the new natural order. All of these developments may not be bad. Experts keep telling us so. But if they’re not bad, then why do so many of us feel so uncomfortable about the direction we are heading?

Let’s start with this idea. Old people are not a burden. They’re not a burden to us as individuals or family. They’re not a burden to our communities. They’re not a burden to our economy. And they’re not a burden to our country. They are people who will be us in the blink of an eye. And we won’t be a burden either. They are people who have added their humanity to the continuum of life, to the collective consciousness of our community and also to our gene pool. Who have added their words and deeds to the fabric of our communities along with their productivity and their taxes. Nor are old people a homogenous group. All they have in common is their age. They are individuals with their own stories and their own thoughts and their own feelings. And because they have more experience and experiences than their juniors. they want to be listened to rather more and dismissed rather less.

What most of us want for our ageing loved ones is to be able to smooth their path to make sure that their later years are peaceful, pleasant and pain free. Above all, we want them to remain connected with their lives, connected to our lives and the lives of their familiar communities, for their lives always to have meaning for themselves and to others who know and love them. We want to support our parents to enjoy this stage of life, the third age as many marketers call it. To do that we need to know what we can do to help our elders to live the best life they can. What is best for them? Not best for our health system or our economy or our government or us and our frantically busy and essential lives.

In my book, I’ve tried to include most of the things you need to know, including all the things that you didn’t know you need to know. Did I mention my number one tip actually? Get a notebook, a big one, a large one. Write everything down, every call, every appointment, every shift in priorities, every line of enquiry. Unless you have total recall you will need it. And remember where you put it. This is no time to be having senior moments yourself.

AGED CARE FOR PARENTS – DISCUSSION – JEAN KITTSON & ANNE HENDERSON

Anne Henderson: Jean that was fantastic. Having read the book, which I did in about a weekend, I’ve decided that this is the bible not so much for the children to have by their bed, but the parents need to have.

Jean Kittson: Thank you so much.

Anne Henderson: I don’t have any parents alive anymore. But I did have a mother that had to go into care in Victoria when I was in Sydney. I’ve been through some of what you’ve been through, but not nearly as much because she didn’t get to that frail a state. I see your book from the perspective of the person that I am getting to, moving into that phase. This is the advice I need so that my poor children don’t have to go through what you went through.

In all of this, what comes out is your sense of humour, apart from the seriousness, and it is a serious book. Patrick Cook’s cartoons are just marvellous. They complement everything. But what comes out also is your respect, which many of the younger generation with ageing parents seem to lack. They somehow don’t spend the time and they don’t have it. Your use of the word “elder” rather than “elderly” underpins that. You say that family is the big thing. What difference does having that family mean? Saying that if you don’t have a family, God help you. And yet, you experienced many problems by just having differences of opinion in the family. So, what’s your feeling about family?

Jean Kittson: Yes. Family can be really difficult. I’ve spoken to so many people with conflict around family. That didn’t happen in my family. My family is perfect and all the siblings get on 100 per cent and we never argue. I just want to put that on the table.

Yes, it can be a real problem with siblings. There are always differences because there are different ranks of siblings. The sibling who is the CFO gets everything done and organises everything. That’s often the eldest daughter. But in my case it was my younger sister. I don’t know how that works. But she does most of it because she works in the disability sector. So, she knows about bureaucracies and Centrelink and organising home care. And then there’s a FIFO which is a “fly in, fly out” – you know, the offspring, son or daughter, who flies in, bangs the drums …

Anne Henderson: We all have those.

Jean Kittson: The FIFO says, “What are you doing to Mum? This needs to happen.” And then FIFO upsets everyone, rocks the boat and then flies off again. Then there’s the bad sibling who nobody likes to talk about. There’s a great example of the bad sibling in the book. An accountant friend of mine said he was rung by this particular son saying, “Oh, my mother’s just died. Have you got her will?” He was the executor of the will. My accountant friend said, “Oh, I’m so sorry to hear that.” He was a friend of the woman who had died. He’d been her accountant for years. And he said, “I’m really sorry to hear that. Yes. I’ll go and find the will. I’ll get back to you.” But he’s a very savvy person. He does his due diligence. My friend then rang the daughter and said, “I’m so sorry to hear your mum’s died.” The daughter replied, “I’m at the bedside. She died five minutes ago.” That’s a bad sibling, really cruel. Just going straight for the will.

But there are ways that families can, without hiring an MMA referee or a high court judge, get through it. There are people who know how to do this. There are steps that you can go through.

Anne Henderson: Did different members of your family, over the experience, start to become more able to work together?

Jean Kittson: Oh yes.

Anne Henderson: And then that experience speaks to the book. So how important was your notebook when you wrote the book?

Jean Kittson: Oh, extremely. Everything was in there, everything. Especially when you ring up Centrelink. As you get older, most people are going to have to be in touch with bureaucracies. They’re going to have to register for a home care package or get an assessment by Aged Care. Some people, for the first time in their lives, have to ring Centrelink and then that could be the most difficult experience.

So, I offer really great tips that my interviewees told me. First, ring before 10 in the morning. Two, when they give you a reference number, write it in your notebook, tattoo it on your forehead, name your pet after it. That reference number is everything. You do not want to lose the reference number of your phone calls. And then, when they suggest a form that you have to fill in, write down the number of the form because there are hundreds of forms that are very similar. And this can go on for months and months. I have recorded some really good tips from other people on how to manage all these things because these people have done it and survived. Just.

Anne Henderson: But, again, it takes an enormous amount of time when people are working in careers and especially if you’re in your fifties. How do people find the time?

Jean Kittson: Oh, it’s really hard. You have to carve out time. And if you think something’s going to take an hour, it will usually take three hours. You can’t just rush your parents. You can’t bundle two old people on frames into a car, rush them to an appointment and think you’re going to go in and be out in an hour. That just doesn’t happen. You need to find the time. And a lot of people who work in aged care have said that slowing down and taking the time it needs is a really good thing for yourself. A lot of people are finding that with COVID now and the lockdown, just how revved up we all got, how many deadlines we would put into a day, how many missions we would go to in the car or how much work we would cram in. So just taking a bit of a breather. It’s hard to organise especially if you’ve got kids.

Anne Henderson: And you have to sacrifice something in your own life, presumably, to do that.

Jean Kittson: Of course. And they are not really sacrifices. It’s like people who ask women who have babies did you sacrifice your work? Well you don’t really sacrifice anything. You just have different priorities and you make different decisions. So you’re not giving something up. You’re making something else more important.

Anne Henderson: Yes.

Jean Kittson: And, you know, it is more important and it gives you a great deal of satisfaction being able to help your parents and keep them engaged and healthy.

Anne Henderson: Your parents are in care now?

Jean Kittson: No, they’re still independent.

Anne Henderson: They’re still managing?

Jean Kittson: They’re independent. They have people come in regularly. And Mum has just started having someone come in and give her a shower because Dad wasn’t managing. He’s on a frame.

Anne Henderson: But they’re not with the balcony that’s about to fall in the pool?

Jean Kittson: No they sold the house and they moved to a retirement village, as my brother wanted.

Anne Henderson: There are various professionals that you go through. There’s lawyers, there’s doctors, there’s finance advisors, there’s bureaucracy at Centrelink. Give us your advice regarding lawyers. You obviously met some shocking ones.

Jean Kittson: Yes, I did, actually. And I didn’t realise they were shocking until after we made all the mistakes. I was researching the book and someone was talking about enduring powers of attorney. And I said, “What’s an enduring power of attorney?” And then I realised there were so many different powers of attorney and you actually need someone to be an enduring power of attorney. And you need to put that in place before you lose the capacity to make those decisions. So you have to decide who is going to be your major decision maker. And it’s different in every state, so I’m not going to try and tell you what exactly it is because I suggest that you get a really good solicitor. Someone who’s used to doing this, and it doesn’t take a long time. Someone who’s used to doing wills. Not someone who says, “Oh and I do estate planning and wills”. Someone who does wills all the time will make sure your will is right. In some states, an enduring power of attorney can decide what medication you’re on but can’t decide what medication you’re allowed to stop. It’s complex.

Anne Henderson: Very.

Jean Kittson: Then you’ve got your advance directive. It takes a weight off everybody’s shoulders when we know what our parents want, how far they want to go, how much intervention they want. In most cases, you’re going to have these remarkable, amazing palliative care people and terrific specialists looking after them. That team will guide you. At the same time, if your family is given a choice and you don’t know what your parent would want, that’s really hard.

Anne Henderson: Hard to find out?

Jean Kittson: Yes. And in terms of bureaucracy, how you deal with finances. There are people who deal with later life finances and they’re not expensive. Every part of aged care has a financial component. You must know exactly where your loved ones stand financially and a financial expert will tell you that immediately. Even if you only qualify for one dollar of the pension, that opens up some 49 different subsidies and concessions.

Anne Henderson: All the things you can get from the government.

Jean Kittson: It also accesses you to care and the right care and the right help. Also you need to understand your finances even if you’re not accessing any government help. When you choose a provider for home care, or when you go into a retirement village or when you choose a nursing home, they all come with contracts. And you need to know the implications of those. Most contracts differ. They’re all negotiable. I never knew that.

Anne Henderson: I love that you’ve got 200 questions at the end of the book about what to ask if you’re going to a nursing home. They’re not all legal ones. They’re quite practical ones. But 200 questions?

Jean Kittson: I know. When I was researching, every time I went onto a website page, about nursing homes there would be advice that there were “five important questions you have to ask before you choose a nursing home”. On every website, the five big questions. Then I spoke to someone who is a CEO of a number of nursing homes. She said, “No, there’s not five. There are 200.” And I said “I don’t want to buy the place. I just want a bed.” Then she showed me the questions and I wanted to know the answer to every single one. Trust me, there are very good nursing homes and there are shonky ones.

Anne Henderson: Well we have found that out haven’t we over the last year and a bit with a government inquiry in progress. And the pandemic has shown that we don’t have very good regulations around nursing homes because we’ve had people working there that haven’t been properly tested and have passed the virus on. You make that point in your book that a hospital has quite different regulations to a nursing home.

Jean Kittson: Yes.

Anne Henderson: You’ve been down this road for so long, what would you say were the most important things we should be thinking of in the way we do elderly care in the future? You make it clear that there’s a mishmash of bureaucratic channels, crisscrossing each other and getting in the way. Is it too big an area for you to have a few simple thoughts about where we’re going wrong?

Jean Kittson: If we’re dealing with the system as it is, at the end of life, most people now who go into nursing homes are in the palliative stages of their lives. So, part of the question is making sure there’s trained palliative care specialists, and the nursing home needs to manage that. But it’s also the expectations we have. A lot of people drop their elder off at the nursing home and think that’s it. Thank goodness they’re in. They may be going phew thanks goodness they’re in the hands of professionals who know what to do. But you can’t just drop your loved one off. They will get their physical needs taken care of, hopefully, but no one has the funding for their emotional needs.

Only 30 per cent of nursing homes are for profit. The rest are not for profit. They’re running on a really tight budget. And most of the people who care for your parents are going to be assistants in nursing. They might be on $21 or $23 an hour. They might have a second job because no one can live on that. They might have English as a second or third language. They have so many responsibilities in the nursing home. They haven’t got time to just sit and give all the care and love your elder needs. So you can’t drop your loved one off. They can be there and live there. They can get their needs, their physical needs catered for, their medical needs and their treatment. But everything else is still family.

Anne Henderson: And, if you don’t have a family, you speak about how many people in nursing homes don’t have a visitor. Even people who forget their friends have gone into the nursing home.

Jean Kittson: A younger person said to me his mum had got early onset dementia and had gone into a nursing home. And it’s just he and his brother and their mum. When she couldn’t remember her friends, her friends stopped visiting and he felt that was awful for his mum. He was really sad. And I said to him, “Oh, well, it puts more responsibility on you.” And he said, “No, no, it’s not about my brother and me. It’s about my mum and it’s about her friends still caring about her and her friends still being interested in her well-being even if she can’t remember who they are. And her friends coming even if it means they’re not going out to lunch that day or whatever it was.”

Anne Henderson: I guess it makes you realise what friends are about. One of our members asked, what would you advise if you had parents whom you feel would be better in care but they haven’t been able to convince them of that. What’s a tip or some tips for approaching it if there’s very little else? You’ve obviously managed to find a way where your parents can be in a retirement village with help and whatever. But say you’ve got a parent who really can’t be looked after unless they’re in some sort of nursing home care, what’s the best way to get there?

Jean Kittson: Well make sure you have a number of good ones that you’ve asked about. Ask the community, ask different organisations in the community about homes with good reputations because nursing homes with bad reputations are known in the community. All the different services will be able to tell you that. Do your own research, of course. Take your elder with you and go and see these places and talk to them about what they are and show them. Don’t just drive them and then drop off. There’s a whole process. In fact, I’ve written it down. I can’t quite remember all of it, but it makes a lot of sense.

Anne Henderson: It’s in the book.

Jean Kittson: It’s in the book. There’s a process where you can keep going and visiting places. Then you can say, well, this is the one we’ve chosen. Then make sure you go every day, have a wing person yourself, meaning look after yourself. Have someone you can immediately go home with and have a glass of wine or bring them with you. Because there is emotional torture with a parent not wanting to be in a nursing home. If it’s a good one most of the time, it’s better. They will be happy there if it’s a good one and you’ve found the right one.

Anne Henderson: I think you gave an example of that, didn’t you? Someone dropped their mother off and was terribly worried, went back the next day and she was happy as Larry.

Jean Kittson: Yes

Anne Henderson: It can happen. It’s a bit like a child in preschool.

Jean Kittson: Yes exactly. But you should keep connected and in touch. If, over a couple of weeks, your parent hasn’t settled then remove them. Something’s going on. Try to work it out. But always when you set up their room make sure you introduce them to all the staff. This goes for hospitals too. Put photos of them when they were young around their bed so that people who care for them go, “Oh this is Elaine. Oh, my God. There she is. You know, travelling in the 1940s in London. And there she is with all these grandchildren who have written notes.” You’ve got to keep it human, sadly. It’s really important to keep making them human beings.

Anne Henderson: You’re introducing the full person to the people who are just part of the team looking after them. Otherwise, they don’t know them any differently from the old person that’s in the bed.

Jean Kittson: That’s right. And then they know what they can speak about as well. And remember to write down things like, you know, my mother is really deaf. She hasn’t got dementia, but she’s really deaf. If she hasn’t got her hearing aids in, she won’t know what you’re saying. And you may think she doesn’t know or she’s lost her mind, but she hasn’t.

Anne Henderson: That’s why this book is just such a bible. It’s all there. You should’ve called it how to grow old happily. You touch on euthanasia very briefly in the book and one of our members asked that if you didn’t mention it in the talk, where does that come into all of this? We’ve had our big debates and we now have various forms of it across the globe. But you do mention a few things there about how it can be possibly a negative. You know, older women thinking they’ll do everyone a favour if they go quietly.

Jean Kittson: Yes.

Anne Henderson: Could you give me a bit more on that?

Jean Kittson: At first I was worried because I’d heard about a program in the UK called the Liverpool Pathway. Probably one of the main reasons I decided to embark on this book was not only looking after Mum and Dad but I was doing a lot of palliative care conferences. I was the MC for them and I was learning about palliative care and end of life. And I thought, we just don’t talk about this. We don’t know all this. We keep making mistakes and even death and dying we don’t talk about.

It was during one of those conferences that the Liverpool Pathway was discussed. This is a pathway that they tried at Liverpool Hospital, where they thought, I think they had the green light and red light or something. Anyway, they decided to put old people who weren’t able to be treated and cured of their old age, on a pathway. In other words, they were wheeled to some corner of the room and left to die. And some would take days to die. This is all documented. When the public heard about it, there was an outcry. So when we started talking about euthanasia, I was really worried about it. And I’d read that the majority of people who choose euthanasia in Scandinavia were older women who don’t want to be a burden to their families. I thought what the hell is this? Are we going to all say, “I don’t want to be a burden, okay, just end it”. I felt fraught.

There was a whole issue of a slippery slope. Who else are we including? Can people just choose their own death? I was worried. And being a patron of Palliative Care Nurses Australia also made it a concern. At the time, they weren’t convinced either. But now, since Victoria has enacted a form of euthanasia which is a very scrupulous system, and many think it’s too hard line, I am more on side. You have to fulfil so many criteria before you are able to choose euthanasia. I think it’s a good.

Anne Henderson: It works.

Jean Kittson: It works. At the end of life, palliative care professionals give you the best possible life to the end and they make decisions so that you’re not suffering. Most people do not suffer at the end of the life, apart from suffering existentially. But some people do and their existential suffering is way out of control and some people have got physical problems they cannot cope with. That does happen. And those people need to be able to choose.

Anne Henderson: They would need a lot of counselling too or help.

Jean Kittson: They need help. Yes. And sometimes that pain can’t be managed.

Anne Henderson: That’s a big one.

Jean Kittson: That is the big one. Sometimes, for whatever reason, the pain cannot be managed. In my own case, I would want to say I need to go. I’m not happy.

Anne Henderson: You have a good line – age can’t be cured, only managed.

Jean Kittson: Indeed.

Anne Henderson: To some extent do you think our problems with older people is that we forget that and see hospital and doctors as always there for a cure. We have such marvellous medical assistance. Is the problem that we just can’t face the fact that we’re going to die and that when you get to a certain frailty, you can only make life easier. You can’t stop it from ending. How much is that perception part of our problem?

Jean Kittson: I think it is. You’re using the word frailty, which is really good, which is appropriate. There’s a fantastic man called Professor Ken Hillman. He wrote the book A Good Life to the End, and he actually set up the first ICUs in Australia, here in New South Wales. He wrote the book because he sees so many elderly people in ICU getting procedures and medicalisation that they really shouldn’t have, and the repercussions are devastating. They are not going to be cured of old age.

Ken Hillman suggests that we start looking at a frailty scale. When I saw it, I realised that in the old days when I’d visit my grandparents, I would ask about someone or other and they’d say, “Oh he’s getting frail or she’s getting frail now.” It was accepted. You’d see frail people around the street. Really frail. And that frailty was allowed to happen. They didn’t try to treat it.

The trouble is when, if you break something or you have a UTI, your parents will often end up in an emergency department where there’s a set of protocols. Hospitals are set up to deal with acute illness, to diagnose and treat and cure whatever it is, the acute illness. But when you’re old you have all these underlying chronic illnesses and you have to be across what they are or know what they are in your parents so you can say, “Well okay, we’ll treat the acute illness.” But we don’t want to try and cure underlying chronic things with heart or lung because the cure is going to be worse.

Anne Henderson: Yes. The cure will kill you.

Jean Kittson: The cure will kill you. And it’s not the way; people don’t want to be in the hospital. I know that from personal experience.

Anne Henderson: It’s not a nice place to die, is it?

Jean Kittson: No, it’s not. That happened to a close friend of mine. She had an advanced directive not to be resuscitated. But the advanced directive hadn’t been shared with anyone. Nobody knew. Not the retirement village. It was with her accountant.

Anne Henderson: That’s when you said it should be tattooed on your chest. I love this sentence where you said: “There are few phrases as alarming as interaction with the government. Sometimes it evokes the image of waiting downstream for a glacier to reach you. And sometimes it’s like trying to outrace molten rock lava down the hill.”

Give us some tips about bureaucracy, because it’s just reading what you have to go through is excruciating.

Jean Kittson: Someone gave me a list. He was an accountant and he had to deal with Centrelink and he heard about me writing this book and asked me if he might talk to me about his experience? And then he gave me this guide to how to deal, Ted’s top tips for dealing with government. It’s on page 26

Here it is:

“Have all your documentation ready because you’re acting on behalf of a parent. You’ll need your parent to appoint you as a nominee for both Centrelink and My Aged Care. You’ll also need certified copies of powers of attorney, ensuring guardianship or enduring medical power of attorney. These should be certified by a lawyer and they need to be certified on every page. Not just the first page. Get multiple certified copies because you end up needing tons of them for a whole pile of stuff.”

Anne Henderson: It sounds like you’re entering into a big business arrangement.

Jean Kittson: Exactly. So that goes on. Different documents. And the next one is don’t rely on email. My Aged Care says they will respond to your emails within 10 working days. One of Ted’s emails was not answered at all and another one took 8 weeks to be answered. Set aside plenty of time for enquiries by phone. An initial wait of 20 to 30 minutes is not unusual for Centrelink and you’ll probably have to wait again for another 20 or 30 minutes if you get transferred. And then the line may drop out and you’ll have to wait again and you’ll never talk to the same person. So there’s these guides.

Keep records of everything. Like I said, just keep detailed records of all verbal communications with Centrelink and My Aged Care and all related agencies, including the record of the date, the time, the person’s name, which will only be their first name, their key recommendations and instructions, and also the reference number for every call. Ask for form numbers, like I said. Be prepared to wait if you escalate, because sometimes you won’t get any satisfaction from a customer service representative. So you’ll have to ask to speak to a supervisor or the supervisor of the supervisor. Be prepared to wait again. Asking to speak to someone a little higher up the food chain is called escalating or elevating but do it nicely. Make it sound like it’s not their fault and that you don’t want to kick the dog, you’d rather kick the dog’s owner. And be polite. It is also really important to avoid any anger or sarcasm, no matter how you may feel.

Ask any questions if anything is unclear. Follow up. Don’t be afraid to complain about your DHS experience. If you can’t get satisfaction, you can lodge a complaint with Centrelink complaints. Here’s all the numbers and the address. If you still don’t get satisfaction, call the Commonwealth Ombudsman, numbers address. The ombudsman will probably refer you back to Centrelink, but it will be given a high degree of importance. And then finally, if you are disadvantaged by errors made by Centrelink, you may be able to obtain compensation through the Scheme for Compensation for Detriment caused by Defective Administration. That’s the CDDA.

Anne Henderson: You make a big point in the book about the language used by lawyers and bureaucrats. Your parents didn’t get to a home, they’re not in care. But they’re in a retirement home. And the whole book treats them with such respect. That is what I found remarkable. Sophie York has asked a question about what would be your three main tips for handling your ageing parents? Just three tips.

Jean Kittson: Right three tips.

Jean Kittson: One, well, two of them I said in my talk, which is.

1) make sure that all conversations are with them at the centre and include them and their wishes, their hopes, their fears. You must listen to all those, really listen to what they’re worried about and what they want and what they wish for.

2) Get a notebook, write everything down.

3) Just give yourself time with them. Just give yourself time to do all this. It’s really valuable, but you will get a lot out of it yourself. As you put it at the beginning, I really wrote this for my children. It’s for me. I’ll do it myself.

Anne Henderson: That’s wonderful. Thanks Jean. I hope it really does well. I think everyone should have a copy.

Jean Kittson: Okay look may I just say something in defence of young people. My daughter put this online on a podcast called “Shameless”. and she said “I’m really proud of my mum,” she wrote. “She’s just written this book.” Her post got something like five hundred likes and all these young people responding with “Oh, my God. I’m going to buy it for my mum”.

Anne Henderson: That is really good. So we may be having a change.

Jean Kittson: I think so.

Anne Henderson: A generational perception about what we do when we get old.

Jean Kittson: I really think so. It was such a pleasant sort of surprise for me. I hadn’t thought that they’d be like that. And they were. I’m very hopeful.

Anne Henderson: Thanks Jean. That’s really good.

Jean Kittson: Thank you.