I remember the last words my father spoke to me. “I have a headache. I am going to go lay down.”
When I went into my father’s room the next morning, I saw him sitting on the side of the bed, lifting his right arm with his left and dropping it, as it fell to the same position, paralysed by his side.
I thought, considering my medical experience - growing up with complex medical conditions and a disability myself - that I should have picked up the link between a headache and stroke. I should have known.
I was only 11 years old.
Mum and I followed behind the ambulance before it picked up pace and rushed off ahead. By the time we arrived at the hospital, we were told that Dad would pass away. The bleed on his brain was too severe. They could fly him to Brisbane, as we were on the Sunshine Coast, however they told us even with the surgeries and interventions Brisbane could offer, he would not have a quality of life.
I stayed by his hospital bed as each day passed. Each day he defied the odds. We credited the ‘Christoffersen stubbornness’. Days became weeks, before becoming months – and then hospital became rehabilitation, before transitioning home.
The father I grew up with was very different now. He couldn’t communicate (speak, read, write) and had severe brain damage among other things. He couldn’t rationalise with me, tell me he loved me or perform ‘fatherly duties’.
Now, I have spent longer being my father’s ‘carer’, than he mine. It has brought me more perspective than most other experiences in my life. My most profound realisations are as follows:
- Not being able to take the pain away from someone you love, feels as painful as enduring it yourself. I have been in both roles, and being the one sitting beside the hospital bed is terrifying. I never could have imagined the heartbreak until I was in that seat.
- Respect the autonomy of the person you are caring for. Imagine co-caring for an adult when you are a child… when they wander off, you cannot pick them up. You cannot make them take their medication if they don’t want to. You cannot make them go to hospital if they don’t want to. At first mum and I felt negligent and guilty when dad wouldn’t cooperate with medical instructions, but after consulting the doctors we realised there was nothing we could do. There is no medical treatment for ‘Christoffersen stubbornness!’ Respecting the choices my dad could still make, even if they weren’t what was medically recommended, didn’t make us bad carers.
- Not getting thanks, recognition, or acknowledgement doesn’t mean you aren’t appreciated. I didn’t realise what a carer did until I became one. My mother has been my lifelong carer and has been through things with me that I would not expect any other person to understand or experience. She has seen things no other mother would see and had to do things or help me with things that no other mother would. I never truly saw or appreciated how consuming that role is – physically, emotionally and mentally, until I was in a carer’s role myself (that role she shared with me too). In terms of my caring role, I have learnt firsthand that it’s a role that is unseen, under appreciated, misunderstood and that many who live it, don’t identify with (I didn’t for a long time).
This National Carers Week, I want to especially acknowledge my mother who is the co-carer to my dad and is my primary carer. As well as my dad, for allowing me to learn the ‘how’ of the role. And for me to find a depth of love and perspective I wouldn’t have otherwise.
To all the other carers, remember to secure your own oxygen mask first even though it may be against your instincts. As someone who has been cared for, the impact a carer can have is immeasurable, so please never question your value.
