Author, comedian and all-round good woman Jean Kittson is the sort of person every family would welcome. She played a leading role in helping her ageing parents through the potential minefield of aged care. That moved her to write We Need To Talk About Mum and Dad – a practical guide to parenting our parents. In this Q&A, she reveals the mistakes she made, what she learnt and what you must know.
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YourLifeChoices: Jean, we all know you as a comedian and author but, just to put it out there, you do a lot of community work. It’s as if you find extra hours in a day. You’ve been promoting your latest book, We Need To Talk About Mum and Dad, but have written several others, including You’re Still Hot To Me, about menopause, and you’re also the patron of the Palliative Care Nurses Australia, an ambassador for the Macular Disease Foundation, the Australian Gynecological Cancer Foundation, the Raise Foundation and Taldumande Youth Services, How do you do it?
Jean Kittson: They’re fantastic organisations and my connection with them all is very personal and so I feel especially privileged and humbled to be a part of them and contribute, even in a very small way. They do incredible work and I have learnt so much from them all. For example, my experience with palliative care nurses was instrumental in me writing We Need To Talk About Mum and Dad.
What prompted you to write this book?
I found that there are a lot of people around my age (64), and younger, who are going through menopause, who still have kids at home, who are working full time and who also have elderly parents they are trying to help, to help them make the best possible decisions. At this stage of life, yours and theirs, you feel this enormous responsibility not to put them in a position where they’re less happy, less well, more lonely, anything like that. You really don’t want to make any mistakes when you try to help them find safe harbour at the end of their lives.
It seems you almost need a degree in aged care to find your way through this system. Was it difficult to navigate? To collect and process the information?
It took me about four years to write this book, partly because I was going on this journey with my mum and dad at the same time, and in that four years they’ve had broken hips, a broken femur, a stroke and broken shoulder, and along with these ‘acute medical conditions’, they have various underlying ‘chronic conditions’ and even finding out the difference between these two was an education. My parents have also changed their lives, and where they live, and we were all learning on the job.
Mum says: “The last five years of your life are like the first five years.”
Everything can change really quickly. Just when you think you have everything settled and organised, something else needs to be put in place and everything requires an interaction with bureaucracies and government systems, and rules and red tape.
Navigating Centrelink or My Aged Care or moving into a retirement village or residential aged care seem to require not only a degree in aged care but also a degree in legalese and bureaucratise. I have tried in my book to break everything down and provide a really clear guide to the things you will need to deal with. It is a manual that includes most of the things you need to know and all the things you didn’t know you needed to know.
I have provided tips for dealing with all the government systems and hospital protocols and provider contracts, starting with when to ring Centrelink so that you won’t be on hold for an hour. They are busy people. I didn’t aim to provide all the answers to all the questions, just to steer everyone in the right direction so they can find the answers easily, help them cut through the jungle of red tape and jargon. It’s a map and a manual, really.
Wisely, you have explainers for all the acronyms that you come across: ACAT and ACAS and RAD and DAP and HCP and CHSP and MPIRs – but does the system need to be that complicated?
It is hard. What you think will take one hour, will take three hours, even three weeks, everything changes. For many people, it’s the first time they’ll have to deal with Centrelink and other bureaucracies, and aged care facilities. You just have to learn how to do it, how to manage it.
There are some golden rules, like being very patient.
First of all, get a notebook and write down the details of every phone call. The time, the person you spoke with, every phone call has a reference number, write this down, it is essential for your follow-up phone calls of which there will be many. Do not lose this reference number, name your dog after this reference number. You will be told to fill out a form, get the number of the form because there are thousands of forms and you don’t want to spend hours on the wrong form. Write down all the people who come and go and who they work for, both their acronyms and the full shebang. The acronyms in aged care can be very intimidating, but once you know them, you too can baffle your family by speaking fluent acronym.
What if there is nobody like you in the family?
There are many people who can provide services for your ageing loved one. But it is important to do your homework and find the best people to help. All the people I interviewed for the book had the same refrain, “I pity the elderly person without an advocate.” If there isn’t a family member who can at least organise some outsourced care for an older person, there are also many organisations that will help the older person remain safe and secure and healthy and happy.
The older person should find a trustworthy solicitor, (they can get financial assistance too if they need), but they must have a solicitor who is protecting them. Every interaction with any organisation, every component of aged care comes with a legal and financial element, so they will need to understand what they are signing and have someone putting their interests first.
Were your parents open to the help that you are giving them?
There’s always resistance. Most people, when elderly, are keenly aware of a loss of independence. You must always, always make sure it sounds like their decision, because it is their decision, ultimately. If you go in all guns blazing and banging drums and saying this and that has to be done, your elders will put up resistance. They’ll be worse than teenagers, with better reason.
There needs to be many conversations. And you will go over the same ground many times, but a lot of the decisions that need to be made need not be based on guesswork or feelings and opinion. There are ways to measure and evaluate exactly what is happening in your loved ones’ lives and what the next step may be and what may need to happen.
Keep having the conversations. Write them down. Read out your notes and make sure everyone agrees that it is a good indication of what was said. Change will either happen quickly because of an acute medical condition or it will happen slowly. Just remember, you’re not their keeper. You’re their advocate. You’re speaking on their behalf and carefully putting things in place.
And it’s important to start early because there are waiting lists for help and care.
And make sure you read the fine print. If they’re moving, say, into a retirement village, read the fine print. Make sure you read the terms and conditions and the costs. All of it. These are all really important things. I know, because we didn’t do that. I thought they were just standard agreements, and so you just sign them. Much of what’s in the book, I learnt the hard way – by making mistakes.
To keep readers entertained you have some great cartoons in the book.
Yes, the cartoons are from my husband, Patrick Cook. They’re brilliant and hilarious.
Does it help to have a sense of humour on this journey?
When my parents moved to a retirement village, my mum looked around their modest apartment and said: “Remember when I was sick of housework and I said I wanted to live in a motel. Now we are.” Or when Dad fell over and was levering himself up with great difficulty and Mum couldn’t see him on the floor, or hear him call for a little help, and she was hollering, “Where’s my breakfast?” They laughed about that, after breakfast.
And a parting word?
We Need To Talk About Mum and Dad is available from all good bookshops or you can order online at macmillan.com. RRP $34.99. You can also leave it somewhere near the TV remote, for your own kids.
Have you found the aged care journey a difficult one? What advice do you have for others?
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