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James' story highlights the challenges of work and care

12 June 2017

James, 28, became a carer literally overnight. His dad, Owen, had a fall and was paralysed below the neck. As an only child James' life changed.

Dad was an imposing man both in terms of his character and physical appearance. He was always sure of himself and decisive. Growing up, I have a lot of memories of visiting him at work, where he was in charge of health and safety on London's largest building sites.

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When I was 12 my parents separated and I spent equal amounts of time with mum and dad. But, by my early 20s we had a functional, but not particularly close relationship. I saw him once a month or so for a catch-up in the pub. I was enjoying starting my career, socialising, playing sports and basically being young and relatively care free.

Caring came suddenly to me: I got a phone call one morning and was told dad had fallen over, and a neighbour had called an ambulance. A previous injury, which he was undergoing tests for, had limited his ability to move his arms. This meant that when he fell at home he couldn't break his fall. Most of the impact was taken by his chin and he injured his spine.

Dad could have fallen a thousand other ways or on any other day when his arms weren't in such a bad way and this wouldn't have happened.

After hours in A&E, we were told that dad would undergo an operation. In just one sentence they sent us into total shock saying, "he might be able to walk again after the operation".

Being an only child, I knew that there was nobody else to help dad. I didn't think I could live with the guilt if I did nothing. In the following weeks I saw dad every night after work and at the weekends. I fed him, monitored everything happening in hospital and tried to keep him company.

As months went by there were many unknowns about what care he'd need, how we would pay for it and how much dad would recover – if at all.
I hoped for the best, but I also prepared for the worst. Dad was a lot more hopeful and wasn't coming to terms with the worst case scenario. That didn't make it easy when we found out that dad had not gained any meaningful movement and was paralysed below the neck.

Before dad's accident I was a young adult, working out life, free from any responsibility and now I've become a kind-of parent overnight. Except, unlike a parent, I know that dad won't need me less as we get older, in fact he'll never regain his independence.

In the two and a half years since my dad's accident I've approached things very differently, I've realised that leaving things until tomorrow isn't worth it. My dad was looking to the future and planning to travel during his retirement. Now, both our lives have drastically changed.

I try to be proactive and do everything I can to make things better for us. I do my best to manage all of dad's care as well as his practical and financial affairs. He has to have 24-hour medical care, which is paid for by the NHS. I've done a lot of research and tried to find help. That's how I discovered Carers UK and used their adviceline to ask questions.

Dad doesn't like to ask for help. He's pushed his friends away because he feels embarrassed and doesn't want people to see him. His personality has changed; he can no longer make decisions and has fallen into depression. It puts a lot more pressure on me and I find it very difficult to deal with his depression – I feel frustrated sometimes.

I've sought help at work and have been supported by my manager and our employee assistance programme. Transport for London are members of Carers UK's Employers for Carers (EFC) group, there are 3,000 carers at TFL and our aim is to reach all of them.

Things do seem more settled now because there are fewer unknowns about his condition and care. I know whatever happens I'll have to cope with it alone. Caring is very lonely. I see other people my age carrying on as normal, whiling away a whole weekend, or just packing up and living abroad. I don't know what I'll be able to do, my future feels less open now.

I feel like anything could happen in life, that's why I did the Camino walk across Spain, it was something I've always wanted to do and I thought, why put it off?
If you're caring, I think you should always ask for help, it's not a weakness. Tell people when you're not coping, if you need some time, or you need someone to cut you some slack or just give you a hug, then let people know.

Carers Week 2017

These organisations have joined together to make Carers Week happen in 2017.

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  • Carers UK new logo
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  • independent age
  • macmillan
  • MSS-logo-orange partnersrow
  • MND logo
  • Which Elderly Care logo

Proudly supported by:

  • The Lockwood
    Charitable Foundation
  • Nutricia

 

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