After my experience caring for my former partner after a workplace injury, just two years later I would return to the role of carer for my mum. In this post, I discuss how I applied what I learned from my first experience about prioritising my own wellbeing, and establishing and maintaining boundaries.
On a Monday in late June 2023, my mum presented to the emergency room with debilitating back pain. She was hospitalised for further tests, and by Wednesday doctors had identified what they believed to be a benign growth in her lower spine. On the Friday, I received a call from my sister, who calmly broke the news to me. Mum was too upset to tell me herself. She had been diagnosed with Myeloma, a type of blood cancer.
The world stood still as I stood in my kitchen. It was the most frightening moment of my life.
It was surreal to hear myself say ‘So, Mum has cancer?’
I made plans to travel to Brisbane as soon as possible. I stopped at the hospital first and saw Mum, comforted by her smile and the cheerful nature I knew. She explained confidently to me the outlook: no surgery would be required to treat the tumour, just a month-long course of radiation treatment to shrink it.
Next to be determined was whether the cancer was isolated or had spread throughout Mum’s body. The first option had a vastly different outlook to the second.
The immediate concern was getting her pain levels under control. Multiple medical teams would oversee her care, including oncology, orthopaedics and radiology. Each team would work out where their expertise and contribution fit into the course of treatment.
My sister- whom we’ll call Rachel- made up a mattress for me on her bedroom floor. I arrived at her place late Sunday evening. Mum was due to have a biopsy at 8am on Monday morning, and then a meeting with the oncology team at 9am. Rachel needed to catch up on work at home, so I headed to the hospital early ready for the meeting. Mum had already been taken away for the biopsy when I arrived. Hours passed, and there was no sign of Mum or the doctors. My sister was anxiously awaiting news, texting between her appointments with clients, and calling hourly for updates. I was not concerned by the delay. My for had spent a lot of time in hospital for surgery. In the same hospital Mum was in, in the same ward. From my experience with my ex-fiance G, I knew time in the hospital was different, and you just had to be patient. Mum arrived back on the ward late in the afternoon, groggy but fine.
That week, Rachel and I took turns keeping Mum company- Rachel liked to get to the hospital early in the morning to meet with the doctor when he did his rounds, and I would take over in the afternoon.
Besides pain and the grogginess caused by medication, Mum was her usual positive and cheerful self. She was surrounded by creature comforts from home- favourite pens and notebooks, books, and mindfulness activities like colouring-in books were all stowed in her bedside trolley. Everything she needed was at her fingertips. Her roommates often commented on how attentive Rachel and I were to our mum, and that she was the most well looked after patient on the ward. Locating this notebook and that pen from the trolley, making a cup of this tea with that biscuit. They were little things, and I was more than willing to do them. But I found after a few days I was feeling mentally drained. Maybe the teenager in me was coming out again, resistant to subservience and not wanting to be ‘bossed around’ by my mum all day. But also, seeing my mum in such a vulnerable state, unable to do these simple things for herself, was extremely confronting. Then having to comprehend the updates from doctors and nurses, and processing the situation as a whole.
I realised I was experiencing symptoms of PTSD. This environment was all too familiar to me. I was seeing the same type of doctors, hearing the same medical terms, the same medication names. I broke down in tears while having coffee with my sister one day. She assured me Mum’s outlook was much more optimistic than G’s, whose condition seemed to worsen with every procedure. Mum’s treatment plan was clean-cut, and all going well, her treatment would be over in a few months.
I returned home to the Gold Coast after four days and worked over the weekend. I followed this routine for a few weeks, driving between Brisbane and the Gold Coast, spending my days off work at the hospital with Mum. After a few weeks, I couldn’t keep it up anymore. I was mentally, physically and emotionally exhausted, and I needed a day off. It was not critical that Mum have someone by her side at all times, and the nurses were there to help her should she need it. She also had other family and friends who would visit throughout the week. Sitting in hospital could be lonely and depressing, but unfortunately life pressed on in all other aspects for my sister and I, and we simply couldn’t be there all the time.
My partial withdrawal from my role as Mum’s carer was not well received by my sister, who told me so in no uncertain terms that she was disappointed in my response to the situation. I explained to her that I had been in this position as a carer before, and this time around, I needed to set boundaries on my time and energy. Mum might not get a cup of tea the instant she wanted one, but that was just the way it was. I went on to explain to Rachel that I had over-extended myself while caring for G five years earlier, and it had made me incredibly unwell. Physically, I had suffered insomnia and tension headaches, and mentally, severe anxiety and depression. I had only just managed to recover from that recent period of my life, and I was still suffering the effects. I could not let myself slip back into that state again. I was concerned Rachel was headed down the same path.
What I realised is that everyone fills their cup differently. What fills my cup will be different to what filled someone else’s. The important thing is not to judge those who fill their cup differently, or who have a bigger cup and need more time and space to fill it.
Rachel had been the strong one for all three of us, able to keep her composure and comprehend the constant stream of information coming through from the doctors. I understood it all too, but I was an emotional wreck because of it, dealing with a confronting wave of PTSD. Still, I didn’t feel that Rachel sympathised with my situation, nor understood why I couldn’t toughen up and be strong for Mum.
Tests revealed Mum’s tumour was isolated, and the cancer had not spread through her body. It was understood the growth did not require surgery, just a month-long course of radiation treatment to shrink it. The orthopaedic and oncology doctors had all come by to visit Mum and given their treatment recommendations, but the radiologist had been delayed. We were eagerly awaiting her input to confirm the next step. It was a Wednesday and I had been visiting Mum that morning. I was preparing to drive home when the radiologist finally arrived to give her recommendation. It was not what we’d expected to hear.
The cancer had contributed to deterioration in the spinal bone, and the tumour was actually cushioning the bone. Shrinking the tumour with radiation would only cure the cancer, and without the cushioning, the back pain would continue. Mum needed surgery to stabilise the deterioration of her spine before radiation treatment could commence. Fortunately there was an opening for surgery in a week’s time.
Mum was released from hospital a week after the procedure, and spent the next two months recovering at home with Rachel. I continued to assist with Mum’s care where I could around work. Rachel had the situation under control, and I was seldom called upon to assist. Mum commenced radiation in August. She completed the five-week course of treatment in mid-September, and relocated to Central Queensland to stay with family to continue to rest and recover. My sister had been preparing to move overseas before Mum’s health crisis unfolded, and resumed her plan in mid-September.
Six weeks after the completion of radiation, Mum flew back to Brisbane for a follow-up doctor’s appointment. She was going to stay with me on the Gold Coast, and I was going to pick her up from the airport. She asked me to meet her at the baggage claim in the terminal so I could pick her small suitcase off the carousel for her and take it to the car.
This request sent me into a spiral of anxiety, of flashbacks to my experience caring for G. During those two years, I did all the heavy lifting, carrying the shopping bags, doing the laundry, loading and unloading the dishwasher. Anything that involved lifting and bending. All the while my own body was screaming at me in pain.
It was just a suitcase, but I have seen the downward spiral of dependence unfold. I have seen how accommodating these seemingly minor requests of heavy lifting add up. I have seen how disempowered the patient becomes, and how overworked it makes the carer.
From my previous experience, I knew I could not control Mum’s approach to her recovery. All I could do was control mine. I knew Mum was scared to hurt her back again, but I was careful not to jump in and lift and fix at every instant.
A month later, when Mum flew down for Christmas, she was able to lift the suitcase off the carousel and meet me at the pick-up area outside the terminal.
Six months on, Mum is pain free. In April she was declared cancer free. With the all-clear, she started the process of pursuing her long-time goal of moving to northern New South Wales. I am currently preparing to move to Ireland for a year, and Mum has plans to visit me while I’m there.
There is no stopping us now.
Kate Kelsen 