Jane’s carer story

Jane cared for her dad, Gordon, whilst he was living with cancer.

I wrote a book about my dad, How Graffiti Saved My Dad’s Life (At Least For A While), to raise money for St Christopher’s. So I’ve told this story – or parts of it – many times over the past four years. But I’ll try to think about my caring role and the impact it had on me from a slightly different perspective here…

When my dad, Gordon Gibbens, was diagnosed with terminal cancer at the age of 81, he didn’t hear what the consultant had said properly. But he didn’t let on until we’d come out of the room, so he had to hear the news from me instead. I was devastated. He appeared non-plussed. I realised I couldn’t do anything about the diagnosis and the discomfort he was set to endure. But I could take all the worrying, admin and practicalities away from him.

Dad was always a keen photographer. After my mum died of cancer at St Christopher’s in 1995, he retired a year or so early from his job in a sports shop and began to spend more time out and about in London with his camera. He loved taking pictures of anything new and unusual – and in the late 1990s, he began to document the growing graffiti and street art scene, and got to know many of the artists.

Fast-forward to the end of 2012 and Dad wasn’t going to let a cancer diagnosis get in the way of his hobby. There were good days and bad days, of course. But on the good days – and the not-quite-as-bad-as-they-could-be days – he’d still go out to photograph street art, often with me in tow. Dad’s passion proved a welcome distraction. It gave us focus and meaning when everything else was uncertain and miserable.

His illness was contained for several years but then another more aggressive cancer was thrown into the mix. It got to the point where Dad was wasting away in front of us. In the summer of 2016, he was fitted with a PEG feed and then caught an infection. He spent two months in hospital. My husband Tom and I were told Dad had ‘a handful of weeks’ to live.

I was also terrified I’d make a mistake with his care.

This is the bit I usually gloss over when I’m telling the tale. It’s still painful to recall the details and the way we felt at the time. While Dad was in hospital, I spent six hours – the full visiting time allowed – with him every day. At first, I felt pressure to take him back to his house and look after him there. But I knew it would all collapse within days if I couldn’t sleep. I was also terrified I’d make a mistake with his care. All liquids, food and medication had to be given via the PEG feed every few hours, for example. I didn’t think I could cope but I still felt enormously guilty, as though I was letting him down.

I kept having stressful conversation after stressful conversation with people at the hospital, and my voice began to suffer. At first, it just kept breaking up but then it got to the point where I couldn’t make myself heard at all. In a way, it felt like nobody was listening to what I was saying anyway, so maybe it didn’t matter if I couldn’t speak…

Sometimes I felt like I was on my own – that nobody was listening, and nobody cared. 

Eventually, I was assured by a discharge coordinator that I wouldn’t be able to cope with Dad’s care, even if I was a trained medic. So that’s how he ended up being transferred to an awful nursing home. But within hours, Tom and I knew it was a huge mistake. We got in touch with St Christopher’s directly – and with the support of the community team, we managed to get Dad back home. We had funding to pay for overnight carers five times a week, and it was agreed that I would care for him the rest of the time, with Tom’s help.

Dad lived for another seven months – and during that time, we managed to get him out and about in his wheelchair, photographing street art again. Even when he was admitted to the hospice right near the end, we had to wheel him down to Penge to look at the new art that was popping up. I was by his side in Room 1, Rugby Ward, when he died on 20 April 2017.

I know I was lucky. I was lucky to have a wonderful, inspiring dad and a supportive, loving husband. But at times, I still felt angry, stupid, worthless, exhausted, confused, anxious, depressed or afraid. Sometimes I felt like I was on my own – that nobody was listening, and nobody cared. I felt I should have done better and that I should magically have been able to stay awake 24/7 and suddenly acquire top-notch medical skills and the patience of a saint.

As carers, we all have very different stories to tell, but they are all valid and deserve to be heard.

Looking back now, though, I realise that was all complete nonsense. We are all unique and every carer’s journey is different. But there are always solutions. There are always. And there is always someone who will listen to you and offer support.

Just over a year after Dad died, I trained as a volunteer at St Christopher’s and signed up for weekly shifts on Rugby Ward. I was dreading walking back into Room 1 – but as soon as I stepped through the door, my focus shifted to the patient and the anxious, exhausted relatives sitting by his bed. I knew nothing about them, but I still felt I could relate to what they were going through. We shared a bond.

As carers, we all have very different stories to tell, but they are all valid and deserve to be heard. Our stories connect us. They make us human. And they help us move forward.

If you care for someone as they approach the end of their life, or have in the past, please feel free to get in touch and we can work on sharing your caring story! Email carers@stchristophers.org.uk