In this post, I discuss my experiences as an unpaid carer, including what I have learned about prioritising my own wellbeing, and establishing and maintaining boundaries with the person I cared for. I also address the stigma around separating from a partner with an illness or injury.
According to the Carers Australia website, unpaid carers make up nearly 11% of Australia’s population, and there are over 2.65 million carers across Australia.
Carers are people who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are elderly.
Caring may include help and support with any of the daily activities of living of the person being cared for. It may include physical and personal care such as dressing, lifting, showering, toileting, feeding or providing transport.
Commonly, carers are responsible for the management of medications, and also provide emotional and social support. Caring may also involve help with organising and attending appointments, banking and dealing with emergencies.
Carers are an integral part of Australia’s health system and are the foundation of our aged, disability, palliative and community care systems.
In a society with healthcare systems under increasing pressure all around the world, unpaid carers are true heroes providing an invaluable service. We hold them with high esteem, applauding their selflessness and sacrifice. We are awed and inspired by their capacity for unconditional love and support.
But what happens when a carer decides to put themselves first?
I remember reading a real-life story in a glossy magazine about a cancer patient who was ‘abandoned’ by their partner. The narrative painted the partner as someone who had ‘tapped out’ when the going got tough. But the truth is, situations like this are not black and white. Illness and injury places an incredible amount of stress on families and relationships. When a partner leaves, its not always at the beginning of the ordeal, but often after an extended period supporting their loved one. The time came for them to put themselves first again.
My Experience
I am thirty-four, and I have been responsible for the care of a loved one. The first time was for my (now ex) fiance, whom we’ll call D. The second time was for my mum. These were profoundly transformative experiences, but not for the heart-warming and inspirational reasons you’d think.
I didn’t come out of these experiences with a saint-like capacity for selfless servitude. I learned to have boundaries with the person I was caring for. I learned to expect them to take reasonable self responsibility for their situation. I learned how to show tough love when necessary. Most of all, I learned how to stay autonomous in the role of a carer.
Where it all started
One afternoon in 2017, my fiance D came home early from work as a tradesman, with lower back pain resulting from an injury at work. He rested over the weekend, but when Monday rolled around, his pain had not subsided.
The days turned into weeks, and D’s pain was not getting any better. Two months after D’s injury, I set off on a month-long book research trip to Ireland, which I had been planning for months. I expected D would be back at work by the time I returned. He wasn’t.
It turned out he was suffering from a protruding L5/S1 Disc.
In the beginning, I took on more of the domestic tasks we usually shared. Carrying the heavy shopping bags, doing the laundry, loading and unloading the dishwasher. Anything that involved lifting and bending, or standing for extended periods of time. Six months after the injury occured, D had his first back surgery, and another three months later. After each surgery he couldn’t drive for several weeks, so I would drive him to and from his medical appointments. I did the cooking and cleaning. We would move house twice in the next two years, and both times I assumed the responsibility of getting this done. We had help moving from some family and friends. I organised to have our utilities and bills changed to our new address.
I was working part-time in tourism, and five months after the injury, I landed a full-time position as a travel agent. It was my dream job. Meanwhile, D’s ability to return to any form of work was becoming increasingly uncertain. He couldn’t even stand in the kitchen to cook a meal without pain. He had had to give up everything he loved, playing sport, going to the gym, working on cars. I was often the only person he saw or spoke to all day. When I arrived home from work, he would offload his ruminations from the day, and coping with D’s increasing anxiety was becoming more difficult. My exhaustion flowed into my new job, and I was not reaching my sales targets. I resigned a month before my probationary period ended, and the impending financial stress of my unemployment loomed like a dark cloud of uncertainty over us.
Despite his constant pain, D could still drive, feed himself, shower and use the toilet unassisted, and so his health condition was not considered serious enough to warrant a carer’s welfare payment, so I had no income coming in. I had a few temporary casual jobs after leaving the travel agency. I had a retail job in a clothing store for about six months, but left due to the mounting personal stress, and worked from home for a few months managing the social media for a friend’s business.
For awhile D held onto the vision of returning to work as a tradesman, but at a point it became clear he was never going to go back to his old life. This was the tipping point at which his mental state deteriorated further. He felt like a failure, that the only hope he had of redeeming himself was to get a decent compensation payout.
I felt helpless- there was nothing I could do or say to make things better for him. D often shared that he had experienced suicidal thoughts while I was at work during the day, and I never knew what I would come home to. I too became severely depressed, and started suffering headaches which became so bad I was physically sick a number of times. On one occasion, unable to keep food or water down, I ended up in the emergency room.
D and I were both deeply depressed, and neither of us were able to pick the other up. With most of our friends and family living at least an hour’s drive away, we were isolated. Creative writing was the one thing that always cheered me up, but I was so physically and mentally drained I struggled to find the energy to work on anything.
My mum came down to visit me regularly, and was the one who alerted me to the desperate state of my own situation. She insisted I seek help, that I could no longer carry the physical, emotional and mental weight of being D’s carer all on my own. I sought counselling and was diagnosed with severe depression and anxiety. I realised the weight of the load I was carrying . I couldn’t try and hold D above water while I too was drowning.
I felt guilty at the prospect of getting on with my life, about seeing friends and going out for a walk or a bike ride. These were things that D couldn’t do, so I felt guilty for doing them, or even talking about them with him.
As a couple, usually we dealt with problems together. As a carer, I had to deal with so much on my own.
My headaches were often triggered when D was undergoing surgery. One time, I spent the two days he was in hospital between our bed and the toilet. One time, I was so sick I could barely make the short drive to the chemist. I had a prescription for Endone, but my body couldn’t stand such strong painkillers, and I vomited before I’d even taken them.
I would later be told by a psychiatrist that if the headaches had continued with such severity for much longer, I would likely have suffered a seizure.
I was determined not to let what had happened to us, a year and a half of hell, destroy what we had build over eight years together. And in the end it wasn’t what broke us up.
A year after D’s accident, I shared with him that I didn’t want to have children. It wasn’t because of his condition- the situation was a catalyst rather than a cause. I hadn’t even thought about having children for the first few years of our relationship. Since we’d become engaged I had known I wanted to be childfree, but had been too scared to tell him out of fear it would mean the end of our relationship.
When I told D I didn’t want children, he didn’t speak to me for the rest of the night. The next morning, he suggested our current challenges were influencing my choice, and asked me not to make this major decision at this stressful time. We lasted for another nine months. If it hadn’t been the baby dealbreaker, I still believe we would have broken up sometime that year. My health was failing, and I simply could not stay in that situation any longer.
I was extremely unwell prior to the break-up. I fainted while giving a writing workshop after suffering an intense headache in the lead-up to the event. The next day my mum came to my rescue, and found me laid up in bed, and D laid up on the couch. Two people, so unwell and spiralling. She decided she had to get me out of there, and arranged to take me to my dad’s place for the weekend, two hours drive away.
Serious discussions were had with my parents over that weekend, and they were shocked to hear the finer details of my current reality. It wasn’t until others looked in on the situation, that I had a more clear perspective of just how toxic it was.
I had been in frequent phone communication with my dad, mostly to ask for money to pay for living expenses. I was constantly stressed about finances. We had D’s worker’s compensation payment, which should have been enough to get us by. Although my dad willingly helped us out, I always dreaded the weekly call to ask for more money.
It was during my stay with my Dad that I again raised the issue with D about not having children. My time away had given me the headspace to evaluate my current reality and the direction of my life. At 29, I considered the impact D’s condition, and whether that was the life I want to lead. And regardless of our mutual deteriorating health, the truth still remained that I did not want children. This was a hurtle we could not get over. And as I had feared, it spelled the instantaneous end of our relationship.
While staying at my dad’s, I suffered a headache so severe I had to sit upright in bed at night. Trying to sleep, the best I could do was doze for a few seconds before my head started to nod and jerked me awake. Fortunately I was able to get an appointment with a physiotherapist who specialised in treating headaches.
Not long after the breakup I relocated eight hours north to a small seaside township in Central Queensland. Mum was living there at the time, and it was the best place for me to land, recover and restart.
My health was in tatters when I arrived. I lay awake every night- if I got any sleep, it was a few hours in the early morning. My headaches were debilitating. My mum arranged an appointment for me with a bowen therapist, and I could barely walk from the car to the treatment room. I vomited during the treatment, on the side of the road, on the drive back, and again once home. It was as if my body was purging itself of my past.
I returned to the unit I had once lived with D a few months later to collect some more belongings I hadn’t been able to take with me. During that week, I developed a crippling headache which had me laid up in bed most of the day. It was as if my body knew where it was, and was being triggered by the traumatic memory.
Over the next few months, I processed the break-up and worked on recouping my physical and mental health. I slowly returned to a regular writing practice. I got a job in retail, and even picked up some hula hooping gigs at local events.
Before D’s injury, I had never suffered headaches, and at times it has made me upset that I have been left with this legacy of pain. These days, the severity and longevity has significantly decreased. I don’t get full-blown flare-ups, just an occasional wave of pain which passes quickly and is easily relieved with massage cushions, gentle stretching or an over-the-counter painkiller.
I have never felt judged for my decision to leave D in his darkest moment. But I know there are people out there who only know one side of the story. I had been determined to keep D positive and motivated, but I came to realise that was not up to me. In that process, I had sacrificed my own physical and mental health for the sake of someone else’s. My sacrifice didn’t make him any better, and it only made me worse.
This experience as D’s carer would prepare me for my mum’s battle with blood cancer. My approach to that experience would look very different for me as a carer, involving firm boundaries and radical self responsibility. I will share about this in my next post.
In Conclusion
My role as G’s carer was tough, lonely and plain unfair. I took on so much, physically, emotionally and mentally. During the ordeal, I could not listen to this song without crying.
‘Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play
And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It’s always darkest before the dawn.’
And I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
‘Cause I like to keep my issues drawn
It’s always darkest before the dawn
And it’s hard to dance with the devil on your back
And given half the chance would I take any of it back?
It’s a fine romance, but it’s left me so undone
It’s always darkest before the dawn
And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my road
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark aimed right at my throat
‘Cause looking for heaven, found the devil in me
Looking for heaven, for the devil in me
But what the hell, I’m gonna let it happen to me, yeah
Kate Kelsen 