Dr Joyce Cavaye and Dr Jacqueline H Watts, senior lecturers in the Faculty of Health and Social Care at the Open University, UK, explain the background to their longer article published in the July/August of the European Journal of Palliative Care
Much is written about carers – how much care, the costs to individuals, and sometimes the rewards of caregiving, but very little is written about the period when caregiving ends and carers become former carers.
Our article on former carers published in the current issue of The European Journal of Palliative Care draws together areas of particular interest for each author. One of us, Jacqueline Watts, has an enduring interest in the areas of caregiving, death and bereavement through personal experience of being a carer looking after an elderly aunt for many years, and also through voluntary work as a care worker in the early 1980s looking after the terminally ill in Calcutta. For me, the admission of my aunt to a care home not long after her 100th birthday was heartbreaking. Seeing my aunt’s long life packed into a suitcase with a few clothes, some photos and just a couple of other personal treasures seemed to signal the end of so much – routines as well as the complete disruption of space and place for both my aunt and me. But worst of all was the guilt of not being able to continue in the caring role; feeling inadequate and lost, unable to adjust to the transition.
For me (Joyce Cavaye), expertise in this area stems originally from my professional role as a community nurse and an informal carer for my father. My focus on carers was sharpened when paying a post-bereavement visit to Susan, a spouse carer. During this visit, Susan said that I was the only one who had ever asked about her wellbeing. Yet, I was one of a team of people who attended Susan’s husband three times a day for over three months. This incident was thought-provoking and revealing. It highlighted the extent to which nurses, general practitioners and others from the so-called ‘caring professions’ overlooked the needs of carers who were not a focus of professional concern. Seeing how a web of caring that includes professional services as well as informal family caregiving serves to support people in the community, confirmed for me the vital importance of informal caregiving in our society.
Thus, the current research interests of us both are rooted in personal and professional experience. However, becoming a former carer is a personal story that is being lived out in many families. Sadly, little attention is paid to, and little is known about, the needs and experiences of the two million individuals in the UK who become former carers each year. They rarely hit the headlines in national newspapers or feature on local or national television. They are almost completely overlooked by government policy.
Carer support organisations provide information and advice for those in the active phase of caregiving but it often falls to bereavement services, so much a part of palliative care provision, that are the most helpful to former carers as they come to terms with a lost role and changed identity.
Former carers are essentially a hidden resource with carers’ support groups now beginning to recognise and utilise their expertise. Government policy, however, needs to acknowledge the needs of former carers and empower them to lead fulfilling lives, whether that involves a return to the paid workforce or volunteering, and also support their physical and psychological wellbeing.
This post relates to a longer article, ‘Experiences of bereaved former carers: issues from the literature’ by Joyce Cavaye and Jacqueline H Watts, published in the July/August 2016 edition of the European Journal of Palliative Care (EJPC). (vol. 23.4).
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