Caring for the Carers: putting one foot in front of the other. Part 1: Who Takes Care of the Carers?

Polly has very kindly contributed a series of blogs for Carers Week entitled “Caring for the Carers: putting one foot in front of the other”. Here is the first of these blogs: Who Takes Care of the Carers?...

It’s Carers Week, with a theme for 2012 of: “In sickness and in health.” The question being asked of carers this year is ‘how much does your caring role impact on your health and well-being?’

As someone who has experienced different roles in caring for 3 family members with mental ill health over the last five and a half  years, my own answer to that question is that the impact has been huge.

It’s stomach-clenchingly hard caring for someone you love who is mentally ill. I’ve been part-time carer for my dad, then for my maternal grandmother and finally, full time carer for my husband. It can be bewildering, frustrating, terrifying and deeply saddening. I have felt rage, despair, fear, uncertainty and absolute powerlessness.

However, it was only during my husband’s recent very severe depression - 8 months spanning summer of last year, to spring of this year - that I began to fully acknowledge and accept that the term ‘carer’ applied to me. When I found myself raging, “I’m not your wife any more, I’m your 24 hour carer…” I felt as though I’d punched myself (and him) in the face. I had lost him to the illness. He had lost himself to it. We had lost our relationship and our children had lost their father. The extremely ill person lying on the sofa was barely recognisable to any of us, least of all to himself.

At first, love and compassion were remarkably powerful in fuelling enough energy for me to get through each day. But what happened when eventually fatigue seeped in, when hopelessness and despair loomed large for me too; when I began to fear that the groundhog days we seemed to be trapped in would never change? Like one of those dreams where you’re in a speeding car with brakes and steering wheel that don’t work, I felt I’d lost control. Kneeling in front of the washing machine, I buried my face in the pile of dirty laundry in my lap and screamed. Damp towels soaked up the sound. In that moment I wanted to be standing on a winter beach with wind howling around me. And I wanted the gale to be so fierce, so piercing that it would blow right through me until I turned to a pillar of sand that in turn would crumble into grains of dry sand, to be scattered by the relentless wind.

I was trapped, with no choice but to continue pretending a strength I didn’t feel and to care for our children and my husband, and to care for the family by generating income to pay the bills that kept on coming. I had no choice but to carry on being responsible. And then I realised that I hadn’t itemised myself as needing to be cared for too. Sure, I had listened and nodded when various Mental Health Professionals had asked me how I was coping and told me I must ‘make sure I took care of myself’. But how do you actually do that in practice?

Who takes care of the carer? Or, more to the point, how does a carer identify their own needs and go some way towards actually getting them met?

I’ll be examining this question from the perspective of my own experiences in a post each day this week.

by Polly