All minds are welcome
Battling burnout – Life as a mental health carer
By Chloe Hall
The “official” definition of a carer is “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.” There is a two year age gap between my brother and me, yet here I was, caring for his emotional and physical needs 24 hours a day, 7 days a week. He was 22, me 24. Schizophrenia took hold of him slowly at first and then viciously and without remorse. We had no idea how long and turbulent a ride we were in for. Looking back, it was better that way.
During this time juggling running a business, taking care of my own needs, caring for my brother, the family pets and trying to maintain some kind of social life was difficult to say the least. I was also having a difficult time in my own personal life after ending a long-term relationship. Everything I did – whether that was go to a meeting or go to the supermarket – I did on a zombie version of autopilot. I felt constantly numb and disappointed, yet at the same time achingly sad and emotional. I no longer wanted to see any of my friends, I barely ate proper meals anymore, just grabbed whatever was quick and easy and I had no boundaries between work and rest because with my brother lost in a deep psychosis it was the hallucinations and voices that called the shots. I often considered reviewing the café in A&E on TripAdvisor whilst stirring a black coffee bleary-eyed at four in the morning since we visited so often. Broken hearted and burnt out, I was a car crash waiting to happen.
My personal breaking point came on Boxing Day 2016 whilst picking my way through a dark frosty field as police dogs barked and a helicopter circled overhead. We were searching for my brother who had gone missing on Christmas Eve, desperately hoping to find him alive. A plea on Facebook I’d shared days earlier had gone viral and a tip off led him to some woods almost 12 miles away. “It’s too much for one person to cope with,” I remember sobbing to a counsellor a few weeks later. Two years of battling burnout as a mental health carer and I had hit rock bottom. The waiting list on the NHS Talking Therapies was well over 18 months I had been forewarned when I saw my doctor after the Boxing Day incident where mercifully, he was found disorientated and with pneumonia but very much alive. Fortunately, I had some money to pay for a few private sessions for counselling for myself.
My counsellor told me it was time to start caring for the carer. I refuted the claims I was a carer, just a concerned big sister, yet I felt like an idiot. I didn’t know where to even start taking care of myself when my poor brother was suffering so much more than I. Here he was, sectioned for the third time in a year, barely 25 years old and lost in a fog of intrusive thoughts. Most of my afternoons or evenings were spent visiting him, driving 30 miles each way to sip lukewarm coffee and make polite conversation in the white walls of a locked NHS ward during visiting hours… if he’d see me. Some days he was too unwell and didn’t know who I was, so I’d sit alone in the car outside and cry. I’d wait 30 minutes and try again, bringing some of his favourite snacks or funny anecdotes of our dogs.
Becoming a carer changed my life completely and for the better. It is a role I did not ask or audition for, yet it is mine. I don’t know how long it’ll be my job, or how well I perform it but it is a privilege to be a pillar of support to my brother when he can no longer care for himself. Caring for my brother, and myself (the carer) has meant completely letting go of many things – like managing expectations, letting go of relationships and friendships, spending time on my own mental health and saying no more often and yes to myself. I am no longer available to hang out with friends as often as we used to, I might take longer to reply to a text or forget to reply at all and I am no longer sorry for that. Should a crisis occur, I have to change my plans at the drop of a hat, all the while grieving for my brother who sometimes becomes so unwell that he loses his speech or doesn’t know who I am. If a friend or partner can’t accept that, they can’t stay in the front seat of my life.
I’m no longer backwards in coming forwards in telling the full, honest story about my life as a mental carer. I can only speak for my experience and myself but I don’t dumb it down for those with little or no experience of this “journey” to make it more palatable for them. I openly share my grief and pride for my brother, for the life we had together, for the life we all will now have in equal measures. I created a journal on a word document, which I kept on my laptop and still to this day, when I want to go to counselling but can’t afford it, I write and write and write. I turned to books as a form of escapism and to educate myself. I took them with me to A&E and read then during the times I had to sit in the car and wait for my brother or me to calm down or before I drove home. I developed a strange fascination with “misery lit” – reading memoirs about suicide, illness and grief made me feel less alone. Reading the stories of others’ made me feel less like I was the only person who knew what it was like to feel so miserable and helpless. Instead, misery became good company.
The last key thing I did to battle burnout was contact my local carers’ centre (North Tyneside Carers’ Centre) whose in-house mental health support worker became an invaluable support to me. I learnt more about my rights as a carer, how to manage my expectations, what medication and treatment my brother had been prescribed and why. I apprehensively took part in their free evening training sessions which re-framed my thinking. The sessions enabled me to meet people in my situation. They understood what life was like for me and together a coffee for a snatched hour in peer support groups became solid foundations of support.
I no longer felt immobilised or sleepwalked through life as a zombie. Caring became something I was able to separate myself from, despite the immediate crisis being no less painful or frightening. Being a mental health carer no longer engulfed me. Battling burnout by re-framing my thinking, finding a support network and talking about the situation helped me find a healthier balance between being a big sister and a carer.