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Sharing the load

As carers, we often find we have a lot on our plates. And then, without asking for any more, we find our portion keeps on growing. Here, Carers UK member Helen Page shares her experience of trying to cope when she can simply carry no more.

A carer's guide:

Right from his birth, I’ve always cared for my son, James, who has Down syndrome and autism. It has got more difficult as he’s got older but even though I’ve definitely had my hands full, I’ve always been able to cope. Just. Helen and James cropped

But then my mother died, very unexpectedly, and my siblings and I faced the additional challenge of caring for my father. And on top of that, untangling all my mother’s affairs was a nightmare. She was quite a bit younger than him, so it had made sense for everything to be in her name and for her to be in charge of running things. It was only after she died that we realised how little my father, sister and I knew. It took so long to sort out.

The problem was, I had James to look after and my sister was already caring for her husband who had become seriously ill. And my brother did not seem particularly willing or able to help in a useful way.

In the end we did manage to get into some sort of routine caring for my father. He lived with my sister and my brother and I took it in turns to stay with him at weekends, though even then it was difficult to count on my brother to actually stick to the arrangements we’d made, which could really make things unravel. We couldn’t quite rely on him.

It was tough on all of us and sometimes there was no reprieve; caring was all consuming.

Sadly, dad’s health got a lot worse. In the end he couldn’t walk, he was incontinent and would call for help two or three times in the night. It was completely exhausting and he was very unwell.

Eventually we simply couldn’t manage to care for dad at home any longer. He went to a comfortable care home but he did say to me several times that he just wanted to stay with ‘his people’. I’ll always feel guilty that I had to say no. I knew I simply couldn’t cope with his care needs 24/7, even if I wasn’t already caring for my son. It was an awful feeling.

Even after my father passed away, sharing responsibilities for his affairs and grieving together has not been easy. We all have different ways of looking at the situation and processing what’s happened.

However, through my experiences I’ve learnt some tips along the way about how to lessen the load.

Helen's top tips for sharing the load:

Spell it out
Communicating exactly what you want of people can be helpful – leaving nothing to chance. This was essential for getting my brother to do anything. It also applies to shouting the loudest to get support from professionals. Often things that I thought were fairly obvious and self-explanatory were far from obvious to others. If you’ve really made it crystal clear what you want then it’s hard for someone to say they didn’t understand. Often that means facing difficult conversations head on and not beating around the bush!

Learn to trust
Sometimes we are unwilling rather than unable to share the load. Letting go, even a little bit, isn’t easy, but the alternative is worse, both for ourselves and the person we’re caring for. It helped when I changed my mindset, and saw people not as ‘helping’ with care because I was incapable of caring, but allowing me to care better. It can be good for the people we care for too – when I’m taking a break, my son has the opportunity to try new activities and have different experiences.

Know your limits
Accepting that I’m not a perfect, limitless source of care has been hard but it has also kept me going. I didn’t ask for any of this. It just landed on my plate. I’ve done my best but sometimes I’ve just had to say no. It’s crucial to remember that what’s right for one person is wrong for another; we have to work out what we can do and stick to that. We simply can’t help others if we’re not coping ourselves.

Don’t suffer in silence
It’s easy to just keep “coping” but often we’re only pretending to cope. And let’s be honest, sometimes coping isn’t enough to sustain us. If we don’t ask for help, many people just assume we’re fine – or worse, spot the opportunity and give us even more to carry. I may not have got all the help I needed and, frankly, deserved – but some is better than none, be it respite care for my son or a chat with my sister when I needed it.

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