September 26, 2023
Meet the Carers - Rowan Brookes
Foreword - Written by Simone Brick
Rowan has been a part of Relay For Respite from the very beginning, helping me form an idea, into a goal, into a reality. She has been a major part of the inspiration to bring awareness to this cause now, as I have known Rowan since before she became a carer and seen the transformation of her life first hand over the last few years. She is one of the strongest, most generous and driven people I know, who has mentored me through many aspects of my university degree and life in general. In 2022, Rowan was an Associate Professor at the University of Melbourne, accumulating many business and science accolades to her name (just look up her LinkedIn, it’s impressive!). She would never tell you any of her achievements upfront though, preferring to listen, absorb, and continue to learn from those around her without ever making others feel ‘less than’. I knew her as a career driven woman with an absolute love of nature, the outdoors and her beautifully close-knit family.
A lot has changed since then, as Rowan will explain. The journey of Rowan and her son is not too dissimilar to my own journey with mum, just this time I am seeing it from the other side. I am in awe of Rowan’s resilience, love, and determination to give her family everything so they all grow stronger through the challenges.
The following was written by Rowan Brookes and edited by Simone Brick. Rowan is writing about her journey with her son. He has read and given his permission for everything that is shared.
I've been living 45 years on this magnificent planet, navigating life with three incredible kids. My home is like a slice of paradise nestled in a village on the Mornington Peninsula, just outside Melbourne. It's got a special kind of something that reminds me of my Kiwi roots in New Zealand. I enjoy slow walks on the beach with our two dogs and witnessing the rhythms of nature.
I have many guilty pleasures – The greatest of which is that I've got a love of indulging in outdoor gear. With all the different sports I enjoy, it's a totally justified obsession. You name it, I'm into it: running, pedaling, paddling, hiking, rogaining, rock climbing, and snowboarding. The outdoors is too expansive and life's too short to just pick one, right?
I took on the role of being a carer for my son in early 2022, when he received a diagnosis of anorexia nervosa at the age of 17. This came right after a six-month period of caring for my Dad, who had moved in with us while seeking a diagnosis for late onset epilepsy. There never really is a perfect time to receive devastating news, and the timing of this diagnosis, right at the tail end of the challenging Melbourne Covid lockdowns, felt particularly harsh.
Becoming a carer hit me like a tsunami, sweeping away many parts of my life that I held dear. Despite the many tough aspects, I would willingly go through it all over again, and again, and again for my son. Something extraordinary about Anorexia is that it gets its claws into every relationship it touches. I think it does this so that it can wield control over the person it afflicts, just like an abusive partner. This can strain family dynamics, as each member gets caught in the disease's grip to some extent.
The initial phase felt like an information overload, as I was bombarded with facts about the condition. It felt like trying to drink from a fire hydrant. It was overwhelming to grasp the severity of anorexia and realize just how ill my son really was (3 out of 10 people diagnosed don’t survive). I grappled with parental shame, wondering how he had become so sick under my own roof. His Dad was also involved in his care, but we made the decision that I would take on the primary caregiving responsibilities during the intense intervention phase.
Then came the need for an abrupt change in the entire family's routines to accommodate the refeeding process. It became glaringly evident how much daily social traditions and celebrations revolved around food. Cooking and entertaining was something I loved, but those have taken a backseat now. Meals have transformed from acts of love and generosity to feeling like daunting and stressful tasks.
During the intensive phase of his treatment, the daily life of my caring role was relentless. It felt like a never-ending marathon. Just picture trying to get someone who's absolutely terrified and disgusted by food to consume a whopping 4500 calories in a single day. Anorexia is a sneaky and deceptive illness which does everything to get in the way of eating enough. As a carer, my role needed to involve meticulously preparing each meal and then watching every single bite being taken. This was to ensure that the food didn't end up concealed, discarded, or purged. Given the frequency of meals (six a day) and the time it took to finish each one (sometimes up to 2 hours), I could easily spend up to eight hours a day caught up in the refeeding process.It's an emotionally distressing journey for everyone involved, and in this system, it falls solely on at-home carers to manage.
In addition to the appointments with GPs, social workers, psychologists, nutritionists, and various scans and check-ups, it was essentially round-the-clock care. Fast forward twenty months into the recovery, and we're in a different phase now. He's back at school and can eat without supervision while he's there. His care now revolves around regular GP and psychology visits whilst continuing to support his eating. This shift has allowed me to step back into full-time work and resume my own training. However, we're still on high alert, as his anorexia is persistent and wields control over his relationship with food. Any lapse in attention or disruptions can trigger a decline in his weight, and the anorexia wastes no time in resurfacing. If he starts to deteriorate physically, it means calls from the school's sick bay or, at worst, a trip to the emergency department. This reality means I can never fully let my guard down or disconnect from his care for very long.
Many of the activities that used to bring me joy and fulfillment had to be set aside to provide care. Volunteering, my regular exercise routines, and the excitement of adventures all took a hit. I stepped back from extra professional commitments, like being on boards, and switched to part-time work.
Prioritising my own mental health was crucial, especially considering my own complex trauma. There was a period when I had a trio of therapists supporting me, helping me keep myself together so that I could be there for my son. As he's been making progress, some of these aspects of my life have started to return. Still, I'm cautious about not overloading myself because the past few years have shown me how everything can change in the blink of an eye.
This is why respite is so important. Being given an opportunity to truly step away and come back to yourself is life giving. It is life giving because as a carer you can replenish, reorientate and revive yourself so that you can do the hard arduous stuff nobody else can again. For me, as my son became able to eat independently again it was clear my only salve would be to start adventuring again. I’ve watched in wonder as time in nature coupled with movement and adventure has slowly returned my sense of self, and the regular moments of awe and wonder fill me with joy. My friends tell me I look more beautiful when I’m adventuring. I certainly know, I feel more alive and like a whole human when I'm outdoors.
One thing I wish others could know about being a carer came to me in the form of a piece of advice that I hold dear to my heart. As the gravity of the situation became clear, a friend reminded me that everything I needed to be an incredible carer for my son was already within me. All the experiences I'd gathered throughout my life had been leading me to this very moment. If you're a carer, recognise that you possess strength, wisdom, and compassion that are needed for the care of the person you love.
I'd also like to shed light on how deeply isolating being a carer can be. Despite having an incredible network of friends, I often felt cut off and overwhelmingly alone. This loneliness sometimes led to distressing and paralyzing thoughts. Drowning in my struggles and having mostly negative updates to share, I began to view myself as a burden on my friends, which made it difficult for me to reach out when I needed support the most. If you know someone who is a carer, keep reaching out to them and reassure them that you're there. A brief chat, a simple text, or an invitation to hang out can literally mean the world to them.
On the other hand, being a carer has been a profound and valuable lesson in the various shapes courage and perseverance can take. My previous idea of courage involved grand and conspicuous displays. The big feats like tackling a rugged 100km run, conquering backcountry snowboarding, or navigating a challenging strait by paddle. Perseverance, in my mind, was linked to ambitious and arduous pursuits. Like a runner pushing through injuries to achieve a personal best.
Through my son's journey, I've come to realize that courage can also be found in the quiet determination to live and regain strength. I've discovered that perseverance can manifest as the courageous act of finishing a meal when every fiber of your being urges you to stop. Witnessing my son's experiences, I've seen the most incredible acts of courage and perseverance unfold in the seemingly ordinary moments.