'No one told my dad he was dying, so I told him the truth. I regretted it almost immediately.'

When Casey Beros learned her Dad was terminally ill, she moved her family across the country to become his carer. Casey's new book, Next of Kin: What to Expect When You're Expecting to Care for Someone You Love, shares her personal story and provides a heartfelt and practical guide to navigating the complicated world of care. In this edited extract, Casey talks about what it was like having a frank end-of-life conversation with her beloved Dad, Jack.

There is no word for the last month of Dad's life other than brutal.

In an extended state of what's known as terminal restlessness, Dad cannot be still. It's as though if he sits, sleeps or stops, death will catch him. So, we move. Day and night we walk anywhere and everywhere.

When Dad's feet are so swollen with fluid shoes no longer fit, we go barefoot. When the café gets too far, we push him in the wheelchair.

When getting out gets too much, we shuffle the hallway: up and back, up and back, up and back. To those watching, his body seems desperate to surrender to rest, but death is a fate his mind simply won't allow.

One night, after dark, we are on our third lap of the hospice grounds — Dad barefoot and arms interlinked with mine.

"Be honest with me. Do you really think I'm getting out of here?" he asks me tentatively.

I inhale into the space between his question and my response. I take a micro-second to consider my choices — be honest or tell a kind lie. Given we have spent a week in hospice and so far no one has said any of the 'D' words — death, dying, die, dead — I choose honesty.

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"I do, Dad, but I think that realistically you're probably not going home for a bunch of good weeks…" I say, also carefully avoiding the D words but trying to give him the truth he is clearly craving.

"Well, that's giving it to me straight," he bristles.

"I thought I'd give it a good fist …"

He trails off, I try to overcompensate with platitudes and then our conversation turns quieter — him going inward to reflect on what I'd said, and me going inward to reflect on what I'd said.

I regret my response almost immediately, and will come to spend countless hours picking apart every word and ruminating on what I could have done differently. Here's a snapshot of my internal self-talk.

Why didn't I just end my sentence after "I do, Dad"? That was the truth, I did think he was getting out of there. Why oh why did my mouth keep going? Realistically?

What, like he's not being realistic? He's dying, for god's sake. That's as real as it gets, you idiot. A bunch of good weeks? Are we talking about grapes? What the actual f*** Casey.

While my inner monologue was vicious, I hold a lot of compassion for that version of myself. She'd been white-knuckling through 'the last weeks' for a year.

It felt like none of Dad's healthcare professionals were being brutally honest with him about where he was at, and he was looking to me for the truth.

I am not a therapist or psychologist or even very good at paying my bills on time, and I was way out of my depth — swimming alongside someone who was drowning, panicking and holding on to me literally and figuratively as though I was an island in a stormy sea.

Dad's relationship with his demise was unsurprisingly non-linear. He didn't follow the stages outlined by Swiss-American Psychiatrist Dr Elisabeth Kübler-Ross's seminal work On Death and Dying — denial, anger, bargaining, depression and acceptance.

Casey Beros with her dad. Image: Supplied.

While this work was historically significant, marking a cultural shift in conversations about death and dying, it was long misunderstood as people reporting on it tried to fit the overly messy experience of dying into a neat, logical framework.

Still, I love a framework.

And I was probably secretly hoping Dad would follow one, so I could follow it too. Instead, he did what I suspect all dying people do and dipped in and out of each of those stages plus a number more — sometimes within the hour. Sometimes, he was philosophical, practical and outwardly full of acceptance.

"It's an interesting dilemma, paradox almost," he told me. "To be accepting of death and what's clearly coming and what the medics are saying and the information I'm reading, and at the same time fighting if you like or doing everything I can do to give my body every chance of lasting another week or month or whatever."

Others, he was outwardly full of fear—pushing me away when he needed to, but wanting me close almost always, as though if we just held hands hard enough, I'd be able to hold him in this world, even though the next beckoned stronger than any amount of muscle could withstand.

Finish lines.

In the final days, I watch Dad's prized mind fall apart. He wants to go to the butcher for mince. I say we will. He asks if my brother is coming with 'the gear'. I say he is. He tries to eat my iPhone with a knife and fork. I silently replace it with a bowl of soup and, most importantly, a soup spoon.

He is quiet, frightened and occasionally angry. The closest person to him, I bear the brunt of that anger, and while I try not to take it personally, it's becoming impossible to separate the person from the disease and it hurts.

He feels ripped off, and I get it because I feel ripped off too. Nurses come to the house every few hours to give Dad more and more medication—terminal sedation to allow his body to go through the process of death without causing his spirit too much distress.

The medications get stronger, the doses get higher and, eventually, they insert one pump followed by another to deliver medication subcutaneously (through the skin), then a catheter to reduce the risk of falling on a trip to the bathroom. Getting him into a restful state drains every last ounce of my well-being and makes my humanity wobble like jelly, as I balance the clear and medically informed need to get him comfortable with him not being ready to rest.

The nurses are gobsmacked; they tell me they have never seen anyone with this much medication in their system still trying to get out of bed. It is too dangerous to let him get up in case he falls or falls on one of us, so we have to gently hold him in the bed to get him to calm down. If my heart was broken before, it is annihilated now.

That night, I gather everyone to the house. Dad is sleeping now but complaining about it by breathing loudly—the 'death rattle' warning that the end is imminent. I'm certain he can hear us around the dinner table and is desperate to join us one last time.

We're all there—his mum, kids, grandkids and his death doula. After dinner, I go in to see him and I can see his breath changing, like a tide slowly washing out. I ask the doula if it's happening, and she says it is. I take his hand in my hand, my other hand on his chest.

Casey Beros. Image: Supplied.

I say things like, 'It's okay to go Dad, there is no more to be done, we love you.' He takes four big breaths, moving his head over his shoulder like he's doing freestyle between the world he's in and the one he's heading to. Then he takes two smaller breaths and, with a quiet exhale, he is gone.

The room feels both achingly empty and bursting at the seams with the gravity of what has just occurred. A moment 68 years in the making. All I can think is all the words the healthcare professionals never used. They all come out to play at once, finally freed from playing hide-and-seek: My dad died. My dad DIED. My DAD died. MY dad died. MY DAD DIED.

Death is, in many ways, many people's greatest fear. There's an unimaginable—to our imaginative minds—finality to it, laced with the inescapable reality of not knowing what comes next. While some claim to have 'seen the light', no one has gone and come back again, as far as we know.

We don't know what comes next; we just have our beliefs to go on. We can agree that the body dies, but what happens after that is unlikely to ever be known. I have certainly never died, so I suppose this entire chapter is a fool's advice.

What I can tell you is that watching someone you love die is heartbreaking, but seeing them leave their struggling body and suffering behind is painfully relieving.

Here's what I've learned.

I've had many conversations with people who say things like, 'We don't talk about death' or 'We don't talk about money in our family.' But here's what I can tell you from experience: wrapping up someone's affairs, even when you have all the relevant documentation, is painful.

It took me the better part of a year, amidst my grief, to finalise Dad's affairs. No one talks about the fact that when someone is terminally ill, once they die a whole other chapter of work begins. It's like climbing a mountain and getting to the top, only to realise there's another, bigger mountain to climb—you just couldn't see it because it was behind the one you were climbing.

The conversation you need to have in your family will differ depending on your situation, but if you do need to ignite a tough conversation, here's how I'd do it.

• Plan it, don't thrust it on them. I'm yet to find an effective segue that takes you from 'pass the pepper' to 'let's talk about what happens when you die'.

• Plant the seed that you'd like to have the conversation and then set a dedicated time to do so in the coming days or weeks. That gives everyone time to think and wrap their heads around the idea before you come together.

• Pick your timing and setting for the conversation. Don't do it at the end of a workday when everyone is knackered, or when there are small children around who will naturally demand attention. If home doesn't feel right, find somewhere that does. A noisy café or restaurant might not be right either—you know best, but it's worth some thought.

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• Be transparent about your objective. The goal here is to smooth the potentially rocky path ahead should anything happen in the future. Once end-of-life planning is in place, you can all get on with living forever and rest assured that everything you need to execute on someone's wishes is in place. Because the only thing harder than grief is having to deal with administrative headaches while grieving. This conversation is a favour to your future selves.

• Acknowledge these conversations are uncomfortable. Very few people go into conversations about end-of-life planning fizzing with excitement. Open the conversation by acknowledging that these topics can feel a bit heavy, and watch everyone's shoulders drop a little as they exhale. This is hard stuff, so call it what it is—there's camaraderie in that.

• Understand that you can only encourage. You can't force someone to face their mortality, whether they're ill, injured or in perfect health and whether they're 30 or 90. Their life—and death—is up to them. If they refuse to engage with the objective of making life easier for whoever has to deal with their affairs should anything happen to them, that's their choice and you have to respect it.

Next of Kin: What to Expect When You're Expecting to Care for Someone You Love by Casey Beros is available to purchase at Wiley. Click here for more information.

Feature Image: Supplied.

Front cover of Next of Kin: What To Expect When You're Expecting To Care For Someone You Love by Casey Beros. Image: Supplied.