The journey of a care-griever, balancing end-of-life care and grief.
I’ve never considered myself to be a natural nurse. My family and friends would likely concur. Despite this, in recent years I have provided end of life care for two close family members who have died from cancer. It took a strength I hadn’t known I possessed. It also took something from me that I suspect I will never get back – my belief that everything happens for a reason. Because there’s no reason in watching life at its cruellest, as an insidious disease strips away all of the parts of someone you love, piece by piece.
Caring for someone you love as they leave this world is both the hardest thing imaginable and a profound privilege. It is a rollercoaster of seeing, doing and saying things you never thought you would have to. Of sleeplessness and anxiousness, and watching for the sign of a chest still rising and falling in the dead of night.
My stepfather died in 2021 after a prolonged battle with what began as prostate cancer and morphed to bowel cancer and then, finally, became cancer everywhere. It was a battle that would have seen less resilient and determined people give up long before. He was in and out of hospice several times in the final months of his life but, despite the incredible doctors and nurses who cared for him there, he didn’t want to die there. He wanted to die at home.
My mother, stepbrother and I sat with his hospice care team, while my stepfather lay in the bed beside us, tears streaming down his face, by this point unable to speak. “We want to take him home,” I told them, having become the spokesperson for our family. “This is the loveliest man in the world who never asks for anything, ever, and this is what he wants.”
His care team were understandably reticent, unsure if we would be able to provide the level of care he needed. But, after listening to our plan – that my stepbrother and I would move in with my mother and the three of us would care for him together – they agreed. At the time I had no idea what I was doing and no idea what I was getting us into. All I knew is that I felt an unwavering obligation to give my stepfather, who I had been lucky enough to have in my life for many years and who my two kids were fortunate to have as their incredible grandad, the one thing he wanted.
We had a hospital bed and other necessary equipment delivered to the house and for the next two weeks we became his around the clock fulltime carers. My stepbrother and I alternated the night shift, sleeping (or, rather, not sleeping) in the lazy-boy in my stepfather’s bedroom, so that my mother could be present with him for the daytime.
By this point my stepfather had both a catheter bag and a colostomy bag, a result of his most recent operation for bowel cancer, so caring for him wasn’t straightforward. My stepbrother and I took charge of changing these bags so that my mother didn’t have to. It was a process of trial and error for us. Error resulting in us being covered in my stepfathers bodily waste. One situation of many where a warped sense of humour was a blessing. Even in death there are funny moments and there’s no shame in getting laughs where you can. Later, when we were dressing my stepfather for his funeral, the trolley his body was lying on rolled away from us because the brake wasn’t on. We absolutely lost it.
The three of us, who by this point had done a crash course in end-of-life care, were by my stepfather’s side when he died. He was seventy-four. I’d like to say it was peaceful, but it wasn’t. True to form, he was a fighter until the very end. It was the first time I had seen someone take their last breath.
After his funeral, my wife suggested I head away for a few days, alone. Those days were a blessing that allowed me the time and space to process my own grief and the trauma of what I had been through. And it was healing, but the respite was short lived. While my stepfather was in the final days of his life, we had the devastating news that my sister-in-law’s breast cancer, which she had successfully beaten six years prior, had returned and metastasized to her lungs, brain and spine. Honestly, it felt like some sort of sick prank.
Even back then, I knew that I would help to care for her when the time came. Because she was family, but also because I now had the unenviable experience of caring for someone who is dying. The time wouldn’t come for two years though – two years in which she tried everything she could and gave everything she had to beat this shitty disease and the diagnosis she had been given. Much like my stepfather, it was a diagnosis she wasn’t prepared to accept, not willingly.
In many ways, this journey with my sister-in-law was more difficult, as I now knew what was in store. I knew what the end of her life would look like. I knew what would be involved in caring for her and the toll this would take. And I knew that my two nephews, aged only eight and fourteen at the time, would inevitably lose their beloved Mum.
Even when someone you love is dying there are still moments to cherish. Two months before my sister-in-law died, we went e-bike shopping together. She desperately wanted an e-bike and she wasn’t going to let a terminal diagnosis stop her from buying one. She even bought an e-bike rack for her car so she could take the bike up to Ōmaha, where her parents lived. I knew it was a waste of money, but it didn’t matter. The pure happiness it gave her to buy the bike was everything. She rode the bike once and never had the chance to use the bike rack.
A few weeks before she died, with walking then difficult due to the growing tumours in her spine, I took her to look at mobility scooters to rent. She wanted one so she could scooter down to her local shops and have some semblance of independence. She was determined to stay living in her own home as long as possible, despite living alone as my brother and her had separated a few years prior.
As unwell as she was at the time, I’ll never forget the huge grin on her face as she hooned around the carpark. Her pure delight in the face of death. When I dropped her back home she tried to walk up her internal staircase and she couldn’t. Her legs had stopped working. I phoned her cousin and said “It’s time for her to come to yours.”
This was the plan, when she could no longer cope by herself she would go and stay with her cousin, who was like a sister to her, and who had a beautiful home with a downstairs one-level apartment for my sister-in-law to occupy. Like my stepfather, my sister-in-law didn’t want to go to hospice if she could help it. But, even with her legs no longer working, she didn’t want to leave her own home. “It’s just for a few days,” I lied to her. She never went back. I cancelled the scooter delivery.
Her final two weeks were spent at her cousin’s home, with family members coming and going and helping us with her care, and my nephews spending as much time as they could with their mum. With what we went through together, I feel forever bonded to her cousin. Going through something so monumental together inevitably forms an unbreakable connection.
A week before she died, I typed as my sister-in-law read aloud to me the letters she wanted to leave her two boys, the use of a pen or keyboard now out of her reach. The letters were to go with the photo albums she had already made for them. I somehow kept it together while I typed her loving words but when I left her and got into my car I wept uncontrollably. I will never forget talking with her about all of the milestones in their lives that she would miss. And I will never forget just how hard she fought to stay with her sons, who she loved more than anything.
We managed to keep her in this lovely home environment right up until one night before she died, when she was transferred to hospice. She died with her two boys holding her hands. She was fifty-two. She died on my nephew’s sixteenth birthday. My nephew, thankfully blessed with a good sense of humour, joked that now no one would ever forget his birthday.
The experiences of caring for my two loved ones as they exited this world are ones that I’ll never forget, or regret, despite how unbelievably difficult it was at times. Both have changed me in some unseen ways. I am a little more empathetic, a little softer inside, a lot more wary of the fragility and unpredictability of life. These experiences have made me more resilient too, more confident of my ability to do very hard things. Many people have said to me, “I couldn’t have done that.” I didn’t think I could do it either. I certainly didn’t want to. But I guess you have no idea what you are actually capable of until someone you love is dying.
