Take good care to look after the carers

Judy Dench and Jim Broadbent as the novelist and philosopher Iris Murdoch and her husband John Bayley in the film Iris

It is no fun being a carer. It is not a role that allows the option “I’ve had enough of this, thank you. Can I do something different now?” There are no happy endings, the cared-for are not going to get better and release is not necessarily relief. Is there a nobility about caring or is it just bloody awful?

The focus here is on the unpaid, private army, which is increasing relentlessly. Two typical scenarios are caring for a partner and caring for a parent who is slipping into dementia. These roles can have profound effects on the caring individuals concerned and on their relationships.

It is not necessary to actually live with a person to assume the caring role. Although my mother, frail and old, lived 300 miles away with paid carers looking after her, I always had an ear half cocked for that telephone call, the summons, the crisis. And when I was with her, as holiday cover, I was always alert, cat-napping, hurrying back from shopping just in case. I learned something of what caring must be like as an all-day, every day, experience. I am not sure I could do it.

The transition process from the known to the unknown can be very subtle. There can be a gradual metamorphosis from partner, pal or parent to the arrival of a stranger in a loved one’s body. We might not recognise the reality of our losses or acknowledge their extent and cumulative effect. These are losses of communication and understanding, of no longer sharing memories or daily trivia, of no longer having a pal. Couples may be together but they lose their couple-dom as the relationship tips into an unbalanced position of power.

Personal well-being of the carer

How can carers protect and nurture themselves so they can maintain their caring role? The first priority is the personal well-being of the carer; to prevent them being overwhelmed by the sorrow of what used to be, how they once were, as a couple, as a son or daughter. It is possible to learn to celebrate the past for the joy it gave rather than mourning the past as compared with the present.

Carers can disappear as individuals as they become swallowed up by the needs of others. All the running around and activity can obscure feelings and needs that lie beneath the consciousness and avoid being acknowledged. “But what about me? I need care too” is shouted inside, but never aloud. These voices need not only to be heard but listened to. This is not self-indulgence but self-care. John Bayley writes of his time with the author Iris Murdoch as her Alzheimer’s took over. After making her comfortable in the evening he needed to have a little “hermit space to himself”.

The self needs to be kept alive and well. The metaphor of a personal keep, within our castle walls, as a protective device can be useful in many relationship issues and could be applicable here. Carers need an inner retreat for recuperation when outside equivalents are restricted or impossible.

Compassion and endurance

Relationship counselling could be of help here as it gives an opportunity for the carer to be listened to, to be supported and be shown how to care for themselves. They can find release in telling of the difficult bits, the unreasonable demands, the childishness and all the negative moments. There is space for reassurance and affirmation of the value of the caring role and the compassion it generates. We might not love or even like the person we are caring for but there is a bond and it is this bond which gives the compassion and endurance to continue. This is particularly true of mothers as they are the only people who have known us for longer than ourselves and the bond is very strong.

It is possible to be trapped in a cycle of caring. The caring role can become an identity in itself so that when one role ceases, other similar ones are sought. The carer feels they cannot do anything else, responding automatically to “Oh could you possibly? Do you think you could?” They have been conditioned into the caring role which can be detrimental to their own well-being.

I think it is inevitable that this has felt rather negative as I have been considering a subject with no happy endings. But many carers, talking about their lives, are not negative, or sad, but say instead: “It’s a privilege.”

• Morag Chisholm is a counsellor with Relationships Scotland. www.relationships-scotland.org.uk

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