Caring for Carers: The Grief Angle

Since the UK Government’s plans to publish a Care Bill were announced in last week’s Queen’s Speech, there has been more media attention than usual on the work of those who provide unpaid support to ill and disabled family members and others. The bill would give carers legal rights to support from their local council.

One can imagine why protection of carers might be a priority for the current UK administration and to governments internationally. Ever before the Big Society concept was unleashed on us all, carers embodied the idea of a society in which services are exchanged among fellow members of one’s own community, instead of in centralised State institutions. Unpaid or “informal” caring ticks many boxes. The availability of a carer affords a person the dignity of living on in a household environment and of routine interaction with a cherished individual who knows both their needs and their outlook on life. Meanwhile, the exchequer is saved the large cost of paying for shelter and professional care for the person in a formal environment, paying out a modest Caregiver’s Allowance instead. What is more, as the population continues to live longer, a model which allows for the cost of additional years of care to be borne by the citizenry and not the exchequer is good news for those charged with keeping the books balanced. However, the health of the carer themselves is often overlooked when we consider the wisdom of this caring model and creates a cost which may have been missing for some years from the cost-benefit analysis of informal versus formal caring. What if the caring model creates widespread illness among those charged with its delivery?

The tone of the recent debate has very much been set by the call from the Royal College of General Practitioners for more widespread screening of unpaid carers for depression. GPs are witnessing the strain experienced by many carers attending their surgeries and are expressing concern that there may be others out there not receiving adequate treatment and support. The best explanation provided for why carers are at particular risk of poor mental health outcomes is the extent of the burden: carers are often working well in excess of the standard working week with little relief or scope for free time. Additionally, we might imagine that the emotional investment in the role is such that the carer will surely never be fully switched off from their role.

In formulating the Grief Study and identifying particular groups who might be at risk, we decided providers of unpaid care should be a focal group. Death and grief can never be far from the carer’s mind. For many, it will already have begun, with both parties mourning the time when the dependent relationship did not exist and when both were free from illness and suffering. Most couples, most friendships are shielded by the uncertainty of which person will pass away first. If each of us knew the order of our departure, our earthly interactions would surely take on an altogether different character. This ignorance is one which of the carer cannot avail. More often than not, they will be the one who survives, left to grieve the person whom they sought to protect from death, and that room in themselves they inhabited as their entirety. In the mean time though, they live on with the fear and the inevitability parked somewhere out of view.

Death itself changes in its character. People will speak of relief after a long illness, that death comes as a kindness, an end to suffering. A carer may have conflicted and confusing feelings about the prospect of the person for whom they care dying. On the one hand they may wish for the end of suffering, but there may also be strong guilt attached to this and fear of selfish motives fueling these desires. The carer may find it difficult to disentangle thoughts of the person’s mortality from thoughts of how their own life will be when the person is deceased and their role will have ended. Others will avoid confronting this altogether and one suspects these people may be most vulnerable should the cared-for person pass away. Similarly, the thought of one’s own mortality also takes on a different character for the carer than from others. Given the intense dyadic nature of the caring relationship, the carer will surely wonder what person might step in to fill the void they leave.

What is clear is this. We need to talk about carers. Moreover, as citizens, as researchers, we need to talk to carers, to allow them express, and to understand ourselves, the frustrations, the joys, the hows and the whys of the role they perform. For perform they must. With a loved one depending on them, a carer must find a way to look strong and appear masterful and in control. Yet, they do more than perform a role. Some actors speak of inhabiting a role, of living with and as the person they are trying to convey. So it is for carers. The caring role is an extension of their selves and into that extension they move all of their energies.

What is meant by supporting carers? Research on the well-being of members of caring professions consistently point to three key factors in maintaining well-being in care-oriented workplaces, each of which could potentially benefit unpaid carers also. The first two are closely related: good communication and role clarity, i.e., is the person clear on what is expected of them and what their responsibilities are? In the case of an unpaid carer, the nature of the role will be primarily worked out with the person they care. However, much may be left unsaid also, for fear of raising the spectre of the illness, It Which Must Not Be Named. There is little evidence that this is the healthy approach. Communication begets communication and clear and regular contact from GPs, pharmacists and care support workers with the unpaid carer will help that person to define the boundaries of their role and communicate this to the person receiving care. The third critical factor is the level of role-specific training provided to the person. Again this is needed regardless whether one is paid for caring or not.

The welfare of those who find themselves caring for someone close to them is a laudable priority for the Government. However, economic rationale alone will not create the impetus among local councils to provide the support carers need. The unpaid caring population of most western countries equates in size to a very large army. Just as we ensure that soldiers are properly trained and properly supported throughout their service and afterwards, so should we think of our legions of carers. This means devising a rounded approach, central to which is the aim of maximising the health and well-being of all parties during the lifetime of the caring relationship; readying a person for the possibility of a difficult bereavement; and ensuring they themselves are properly supported after their work is completed.

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