Who cares for the carers?

As a clinical psychologist, I’m often seeing individuals who are caring for a loved one. Their partner or parent or child might have a chronic illness, which may or may not be terminal. Most people know by now that it really tough to be a carer. Many know the statistics around the high rates of depression and anxiety in those caring for someone they love. Some people know how to care for the carers, but most don’t.

From all the stories I’ve heard over the past 25 years, a common thread is clear. The carers need more than financial and practical help. They need more than frequent suggestions by friends and family to “sing out” if they need a hand. They need understanding and empathy.

When an individual has a brain injury for example, that person may become abusive or aggressive at times. At the very least, they may say or do things that hurt their carer. Of course, the patient doesn’t mean to cause any pain. They can’t help it: they are unwell and affected by their injury. We all feel for the injured person and so we should. But what about the carer who has just been told that all their care means nothing? Or perhaps they have been accused of sticking around for the money. Or maybe they are being constantly told that they are not giving enough love or attention. The carer knows their loved one can’t always help what they say, but it still hurts.

We need to be sensitive to the pain of the patient and their carer. When a carer talks about the hurt they are feeling as a result of some harsh words or worse, we can’t immediately rush to the defence of the patient. When a carer hears: They didn’t mean it – they are unwell, the carer’s pain is dismissed and all that remains is guilt for having said anything.

In some circumstances, it becomes impossible for someone to be the permanent carer and so they may no longer live in the same house. But the carer doesn’t stop caring and the carer doesn’t stop hurting if the patient blames them for organising alternative arrangements. And the carer is deeply affected if their extended family and friends remain attentive to the patient and assume the carer can cope without support.

Hopefully we are getting better at knowing how to support those with a chronic illness and in many ways we are getting better at understanding that carers can break. Now we just need to know how to show the carers as much empathy as we show the patient.

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