I was not alone as a carer. There were others online whose experiences I could read and identify with; I had friends who provided help and care in a variety of practical and emotional ways, and a mum-in-law who offered support and understanding via email, even though she was halfway round the world. I had a good relationship with the professionals involved in my husband’s care co-ordination. But I still had to get through each day. And there were days when the only way to do that was one tiny footstep at a time; one moment, one breath at a time.
I sometimes experienced an intense feeling of claustrophobia: I didn’t want to be in the same house, the same room as the illness that was driving my husband’s behaviour. I wanted to scream, walk out, get in the car and drive somewhere far away. I didn’t. Though I did discover that the occasional scream helped to release some of the pent-up feelings - in a room by myself, when the children were at school and with a couple of big cushions to absorb the sound. I also found out the hard way that I’d feel less frustrated if I stopped trying to use reasoning, logic or contradiction with my husband when his whole world view and beliefs about himself and the future were so very bleak and untrue. I read and researched to find out as much as I could about the nature of the illness and this was an important part of caring for myself in this situation. Information made me feel more empowered - it didn’t change what was happening but it changed my understanding of what might have caused it to happen.
What other ways did I find of safely dealing with or expressing my feelings? First I tried to name them (just as I had aimed to ‘name’ my needs). ‘I feel furiously angry’. ‘I feel numb with grief at how this illness has changed him.’ I owned the feelings. They were real and they were mine. I talked with close friends, cried with them, let myself be hugged and held.
I talked with our children as appropriate moments arose - asked them about their feelings; answered their questions; held them when they cried and let them see my tears too.
And then I tried to find small, practical ways of responding to feelings:
I feel very anxious - I played a lot of ‘Patience’ with a pack of cards. Something about the rhythm of laying out and dealing cards was soothing to my anxiousness.
I feel powerless - well, yes, I was. We are all powerless to change anyone else. But scrubbing the bath far more furiously than was needed gave me power over the bathroom!
I feel trapped - a friend coming round to take my husband out on an enforced, short walk provided breathing space. Ensuring there was someone else in the house with him meant I could go grocery shopping - not something I’d usually be enthusiastic about, but it was a change of scene and it meant I could turn the music up REALLY LOUD in the car.
I feel fearful about what’s going to happen - I reminded myself that there’s only ever today. Then I’d do something hands-on and ‘in the moment’ with the kids.
I feel…actually I don’t even know how I feel, I just feel bad - I did something nice for me; abandoned any attempt to catch up with work late at night and had a bath with aromatherapy oils and candles.
I feel sad and unmotivated - I found that absorbing myself in work (I’m fortunate to be self-employed and to work from home) during rigidly time-tabled hours allowed me to occupy only my ‘work world’ for that time. Stepping as fully as possible into any of the many other roles that we carers adopt was something I always found reinvigorating, even when I didn’t think I could face it. I also made a gratitude list every day, sometimes several times a day. There’s always something to be grateful for and listing makes me look around and see things anew: ‘I’m grateful for the warm water running over my hands as I wash them; I’m grateful for the snowdrops beginning to push through in the garden’…
And my biggest daily gratitude today is that my husband continues to recover strongly. I’m writing this from the perspective of looking back and also from a point of hope for moving forwards. I do know how fortunate we are and I’m very, very grateful.
See also 20 tips for a low mood, compiled by Carers UK, a website for ‘the voice of carers.’