That end-of-life talk with parents

A new guide traverses the right, and many wrong, ways to navigate change.

‘When it’s not talked about you end up just reacting, lurching from crisis to crisis’: Jean Kittson with her parents, Roy and Elaine. Picture: Rob Palmer

Jean Kittson’s dad, Roy, was back up on the roof of his house a week after his hip replacement at the age of 75, noisily demanding his daughter pass him up his glasses and the stick he needed to walk.

Her mum, Elaine, woke up at 5am with chest pains six years ago, but “didn’t want to be a bother” when her GP couldn’t fit her in before 11am. She’d had a heart attack.

Today Roy is 93, Elaine 95. Both have failing eyesight; Elaine is deaf and relies on a walker. They live in a retirement village and are contemplating moving into a nursing home.

“Between them, they kind of make up one whole person,” Kittso­n says. It is her affectionate way of acknowledging that despite­ a lifetime of arguing — their default setting, she says — they can’t do without each other.

The author and comedian has seen her family dynamic shift in the past half-decade to the point where she and her two siblings have become, in effect, their ­parents’ parents. Kittson is far from alone, with longer life expect­ancy since World War II creating ­almost an extra generation of older age, casting many thousands of Australians into the role of parents for people both above and below them in age.

She isn’t a fan of the word “journey”, but says it has been more mind-boggling than eye-opening to help her mum and dad manage their housing, financial and health needs as they have become less able to do it themselves.

Kittson has gathered these ­experiences into a thought-provok­ing book, We Need to Talk About Mum and Dad. It is less a comedic look at the antics of ageing parents and more a practical guide to how adult children in their 40s, 50s and 60s can help navigate the emotional and bureau­cratic roadblocks, speed traps and potholes of their parents’ final years. With some antics.

“We have this whole generation still with us. Their needs are getting greater, but as their children you want them to have value, meaning and love in their lives right until the end,” Kittson tells Inquirer. “That said, I know my parents are lucky in that they have people like my siblings and I to worry about them. So many older people simply don’t have that practical and emotional support.

“I know how gruelling it has been to help my parents navigate the aged-care system, so I can’t ­imagine what it would be like if you were older, hard of hearing, not so great on a computer, and alone, as so many are.”

While the book, her second, is practical, it is also deeply personal. Five years ago, as she was touring to promote her first book, You’re Still Hot To Me, a similar fact-filled conversation-starter about menopause, women kept talking to her about their struggle as members of the sandwich generation, particularly how to cope with their ageing parents. “They were like me, with a job, with kids still at home, but worried about mum and dad getting frailer. We all needed a guide.”

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Trials and tips

Kittson uses her parents’ story to chart the ups and downs many people face about whether their parents should move out of the family home and into more manageable accommodation, setting up the right financial and legal arrangemen­ts for if they become incapacitated, and how they will handle tricky issues such as end-of-life care and support.

The book is full of practical tips such as keeping multiple copies of important documents for all the bureaucracy they will face, or checking their car for dents when you start to worry about whether they should be driving.

It’s fair to say Roy and Elaine are of their generation — kids during­ the Great Depression who can remember what it was like to see one in three breadwinners lose their jobs, and families lose their homes. Practical, independent, a bit stubborn.

Kittson recalls in the book the time she found out her father had never followed through on an ­appointment to have a stent ­implanted in his heart. She phoned the doctor’s surgery and was told a guy named “Bert” had phoned to say Roy was all OK now and wouldn’t be proceeding.

“Dad still never goes to doctors because he thinks they’ll keep looking until they find something wrong with him,” Kittson says. Starting the conversation with her parents about how the final years of their lives could best be lived was no less difficult for Kittson than it is for anyone. She found her mother’s hearing loss seemed to worsen and her father became very hard to pin down.

“It’s the end of life. It’s about getting sick and dying. No one is comfortable with that,’’ she says. “It’s a reminder of mortality and all those things as humans we feel sad about. It’s difficult and awkward, but procrastinating and leav­ing it too long is in no one’s interests. The last five years of life are a bit like the first. They go ­really fast.

“When it’s not talked about you end up just reacting, lurching from crisis to crisis. It’s so distressing for everyone involved.”

Tough conversations

Kittson says if you can manage to get past the difficulty of starting these conversations — about when to downsize from the family home, or creating an enduring power of attorney to allow decis­ions to be made when a parent no longer has capacity to do so, or discussing­ an advance care directive to determine how to handle a person’s dying days and hours — then the outcome can actually create more control and certainty for a parent. And that might be the best argument to get the conversation started.

But it’s inevitably more complex­ than a one-off family sit-down­ around the table. “It can take years of conversations to work out what to do,” Kittson says.

She is happy to recount the times her family didn’t get it right. The book describes the time tensio­ns boiled over in the car on the way to the solicitors to discuss giving Kittson an enduring power of attorney over her parents’ affairs­ in the event they lost capac­ity and a decision was needed on withdrawing medical treatment.

She recounts a scene that would give Seinfeld’s George ­Costanza’s parents, Frank and ­Estelle, a run for their money. “Dad didn’t really want to do it and he said: ‘I think it’s too late in the day to be doing something like this. Let’s do it another day.’ And Mum said: ‘Why are you saying that, Roy? You always want to put things off. That’s why nothing gets done. We have to do it.’ Then Dad said: ‘You know this solicitor was what’s-his-name’s solicitor?’

“Mum exploded. ‘Don’t be ridic­ulous! What are you saying? You are just making things up! (To me:) He has gone mad. Again!’ ”

Or the time the three children agreed their parents needed to move out of the family home, which was falling into disrepair, but all had different solutions about where they should live. The problem was her parents hated all three options, and instead decided a year later to sell the house with no subsequent plan in place. We might rent, Roy said. Renting? At 90? Kittson thought. Really?

This created a frenzy of upheaval until a retirement village unit was found and deemed suitable. It is one of Kittson’s key tips. “Listen to your parent. Delivering an ultimatum is neither nice nor fair.” Decisions should be theirs.

There is other useful advice. Get a notebook, and use it specific­ally for your parents’ needs. Have in it the names of key people — doctors, podiatrists, hairdressers and so on. Know their appointments. Know their wishes about end-of-life care. Have it in writing. Use professional help, particularly GPs for advance care directives and solicitors for things such as drawing up enduring powers of attorney­. Children might create a WhatsApp group devoted to sharing­ information about how their parents are tracking.

Kittson writes not simply as a daughter of parents in their 90s. She is also the patron of Palliative Care Nurses Australia and an ambassador for the Macular Disease Foundation Australia and the Australian Gynaecological Cancer Foundation. She has thought deeply about how the lives of older Australians can be improved.

“Ageing is often seen as a ­problem,’’ she says. “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, and we outsource their care. And now we even bump them off — to put us out of our misery.”

Boomers’ new way

Kittson thinks Roy and Elaine’s ­generation may be the last to be treated in such fashion. She dis­agrees that their future is hers. “We will make sure we get exactly the care we want. We will be much less likely to be stoic and put up with things.

“I wrote this book as much for my daughters as me. I’ve already had conversations with my daughters about my preferences at the end of life. I don’t want them to be fearful, afraid or live with the burden of remorse or shame or grief or guilt, as many people do.”

Kittson is hopeful that, armed with the right tools, her generation can help her parents’ live better lives. “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 to our lives, and their lives of their familiar­ communities; for their lives always have meaning, for themselves and for others who know them and love them.”