Not the end of the story…
Caring for a terminally ill loved one
When health journalist and TV presenter Casey Beros learnt her dad was terminally ill, she did what many wouldn’t and uprooted her young family across the country to become his primary carer and advocate. Despite 15 years reporting on Australia’s health system, Casey quickly discovered just how confusing and complicated the world of care can be.
“I thought I was prepared, but we fell through the cracks constantly,” she says. “I wasn’t alone either. There are millions of next of kin out there, fumbling through this journey with no roadmap. I knew I had to share my experience with Dad and change that for others.”
In her powerful new book, Next of Kin, Casey combines her personal experience with world-leading expert advice to offer a heartfelt, practical guide for the three million Australians currently caring for someone they love.
With warmth, wit and honesty, she discusses the torment about everything – from the agony of awaiting medical results to the often-avoided topics of illness, dying, grief – and what it really takes to care for someone through the end of their life.
Next of Kin
What to expect when you're expecting to care for someone you love
WHAT READERS WILL FIND INSIDE
- Clear tools to navigate Australia’s healthcare system and advocate for themselves or a loved one.
- Conversation strategies for talking about illness, dying and grief with adults and children.
- Emotional support for carers facing burnout, guilt, and the transformation of key relationships.
- Legal essentials, including wills, powers of attorney, guardianship and estate planning.
- Expert advice covering palliative care, grief counselling and legal affairs.
Edited extract: Next of Kin by Casey Beros (Wiley $34.95)
You can’t hack the system, but you can work better within it.
If you’ve ever had a pregnancy scan (or seen one in movies), you might be familiar with the imaging technician calling out a heartbeat or cute little body part. When it comes to illness and disease, though, there’s a clear delineation of role and responsibility – the imaging technician’s job is to take the pictures, not usually to report to you in the moment.
There’s a good reason for this. The images have to be interpreted by a doctor who specialises in imaging (a radiologist) and then delivered to your treating doctor, who assesses their relevance in the bigger picture of your health.
As tempting as it might be, don’t ask the imaging staff for results or even what they can see; they aren’t allowed to tell you. Likewise, don’t try to read the technician’s expressions for clues. They are working with complex machines and trying to find clear pictures of body parts in what to anyone else looks like mud.
Then, depending on myriad factors, how you receive those results can follow a number of paths. Your doctor may ask you to make another appointment to get the results; they may call or text you; or they may do nothing and expect you to follow up. Don’t assume anything, including the old adage ‘no news is good news’. It’s your job to get your results.
You can’t skip the worry, but you can learn to manage it.
Worry is one of those useful emotions that can spring us into action, but it can also make us feel unnecessarily anxious in the face of things we’re not actually in control of. While the results are out of your control, there are a couple of things you do have some control over:
Doing what you can to smooth the path by thinking ahead, communicating well, and anticipating needs and obstructions (e.g. pre-booking a doctor’s appointment to get results).
Managing the worry within yourself by asking yourself: “Will worrying about this change the outcome?”
If the answer is no, in theory you should try your best to let it go. But when that’s impossible, this is all you can do:
- Give the worry somewhere to go: Book a session with a therapist, trusted friend or family member to talk it out. You can even write it down. Just get it out of your head.
- Practise positive (or neutral) self-talk: It’s possible the result might not be what you want, but you’re not there yet. There’ll be plenty of time to worry, strategise and act if your fears materialise. Give yourself the gift of not knowing before you know. And, what if the results do go your way? Stranger things have happened.
- Allocate some designated worry time, if you can’t let it go. Pick a timeframe in which you’re allowed to worry, like for your entire shower or while you do the dishes or for the next 10 minutes. Worry away, let your mind go where it needs to and acknowledge what comes up, then bring it back into the present.
When it comes to helping manage worry in others, all you can do is encourage them to practise the same things you are.
Don’t make promises you can’t keep; if there’s a chance things won’t be okay, offering assurances that aren’t yours to give isn’t helpful; nor do I think it’s kind.
You cannot hope them well, as much as you’d like to. Instead, aim for optimism. Don’t shoo their fears away. If they’re afraid, let them be afraid.
Keep an open mind.
Like life, healthcare is a bit of a jigsaw puzzle. Some pieces fit together easily, while others seem like they belong to different puzzles altogether. Results help paint a picture, but it’s a picture of a moment in time, and there’s room for both human and scientific error.
This depends wildly on the context, but if you take one set of results to 10 different practitioners, you’ll likely get a slightly or significantly different interpretation of them – which is why becoming a great advocate for yourself and the people you love is so important.
Casey Beros is a recognised Australian journalist, facilitator, author and TV presenter who lives on Whadjuk boodja.
For almost 20 years, her job has been to ask questions of the world’s brightest minds on how to live a happier, healthier life.