Carer: someone who provides unpaid support to a family member or friend who would not be able to manage without this help.
It’s a definition at the core of my working day. As the Carers Support Project Officer at Macmillan Cancer Support my 9 to 5 is spent working with a large variety of people to increase the identification and support of cancer carers. But do I identify with the term myself?
On 2nd February 2011 my family were dealt the heartbreaking news that my dad, in the prime of his life and height of his career, a fit and healthy 47 year old, had a brain tumour. I was surrounded by optimism and stories of survival but from the moment I heard the news there was a feeling in my gut that this wouldn’t be one of those stories.
“Dad’s taxi” had his driving license taken away. Whilst we waited for the operation on 22nd February we got a sneak preview of what could be in store. We needed some bread and milk, and to be honest I think dad needed his supermarket fix, barely a day went by when he wouldn’t pop in for something. The time had come to repay the favour and give him a lift. He joked about parking in the parent and child bay, “I don’t think the child is supposed to be driving, dad”.
A couple of days later he went in for his operation. We had waited with baited breath for 3 weeks, hoping it would remove the cancer and we could all live happily ever after. Due to its location in the brain they couldn’t remove it all, and even worse it took away his mobility. That ordinary trip to Sainsbury’s a few days earlier was one of the last time’s I would see my dad walk unaided.
The man who never sat still, if his eyes were closed he wasn’t sleeping, he was just resting his eyes, was now entirely dependent on the people around him.
A carer is someone who provides unpaid support to a family member or friend who would not be able to manage without this help. Caring can mean many things including helping with personal care, providing transport or assisting with everyday chores, even being a good listener.
There are some jobs that were forbidden, daughters are not allowed to cut grubby toe nails apparently, but a cheeky manicure and pamper were well within the job description. My step mum took on the role of nurse dispensing medication and providing personal care. She gave up work to care for him full time. My step mum ticked all the boxes; she was my dad’s carer.
As the tumour grew, so did his dependency. And so did our fears. Whilst visiting alone at the hospital one evening he was talking but not making sense, I didn’t want to leave him but resolved I’d mention it to the nurses and make sure they kept an eye on him. Just before I was about to leave he had a seizure. I had no training and was clueless how to react, all I could do was do my best to keep him on the bed and shout for help.
That wasn’t the only time he had seizures. It happened at home whilst I was at work. My step mum acted quickly and he was rushed to hospital. He joked later about being so hungry he’d had to resort to eating the pebbles in the back yard. He was home before I finished work. I was holding his hand, chatting about how he was feeling then trying to distract him with random conversations. His hands were starting to tremor, he’s only just been discharged from hospital, surely he can’t be having another seizure. My step mum put him in the recovery position whilst I called 999 scared half to death. I’ll never forget being told off by the operator for failing to remain calm whilst my dad was in the other room turning blue. Was this the moment we’d all been dreading?
It wasn’t, but it was the turning point. His condition deteriorated. Understandably he became anxious and depressed. As a lifelong daddy’s girl I tried to take on the load of his worries and became determined to keep him happy, chatty and distracted 24/7 – to keep the dad I knew and loved. He was in Pendleside Hospice from August to October to have a little respite and reassurance from the professional care. I’d spend my evenings chatting to him about anything and everything. One night we watched The Little Mermaid together, special daddy and daughter time.
On 28th December our GP came to the house after his condition had deteriorated drastically on Boxing Day. 2 months. That was the prognosis.
He went back in to the hospice. In January the doctor warned us it could be 24 hours. My world shattered. I can no longer remember the exact dates that everything happened because everything starts to blur. I immediately took compassionate leave from work and spent most of my time by his bedside. He was sleeping most of the time and I didn’t want to miss those precious hours he was awake. He was increasingly shaky so I was feeding him in the evening and I started reading The Magic Faraway Tree to him. The book he’d read to me and my brother as children. Talk about role reversal.
On 2nd March 2012 I held his hand with my step mum to the left of me, and my grandma, grandad and many aunties and uncles around the bed.
So, was I a carer? A carer is someone who provides unpaid support to a family member or friend who would not be able to manage without this help. By definition, yes I was a carer.
From 12th November 1986 I was his daughter. I was just doing what I thought any daughter would do.
Did I become a carer when I gave him a lift to Sainsbury’s? Did I become a carer when I started giving him manicures, making the odd meal and popping in to town to get his favourite vegetarian black puddings from the market? Did I become a carer when I started to feed him in the hospice?
The honest answer is that I don’t know when I became a carer. Half of carers don’t identify with the term ‘carer’ and this is likely because we are all doing what we think anyone else would do. But if you are helping with personal care, providing transport, assisting with everyday chores, or even being a good listener, you are a carer.
So, what’s my call to action? Why did I write this? I was 24 years old when my dad was diagnosed. It hit me like a tonne of bricks and turned my life upside down. I was a young adult carer. So to mark young carers awareness day, if you can relate to my story, I want you to get support. I’m not going to label you for the sake of a statistic, only to tell you that there is support for you. There are services out there to hold your hand. There are people to listen to you, people who feel the same way. There’s so much out there!
Give Macmillan a call or join the Online Community
Find you local carers centre or join a community of young carers on Babble or young adult carers on Matter – they’ll have had the same crazy, scary, random thoughts that you have. You are not alone.
Pop the kettle on. Have a bath. Escape in a book. Do something you enjoy today.
