I have been a nurse since 1986. I have been a hospice and palliative care nurse for 25 years. I have been a carer (alongside my brother and sister) for 15 years – first at a distance, weekends and holidays and more recently as a full-time carer with my mother living with us at home.
There are moments in my life which have taken my breath away, unforgettable, magical moments when you know your life has changed for ever: When I first met my husband, when I qualified as a nurse, when I got married and when my parents first saw our daughter.
There are other times when the breath is pushed out of you, unforgettable, terrifying moments when you know your life will change for ever: When my father had his first stroke, when my mother was diagnosed with Alzheimer’s and when my father died.
And there are times when the breath is dragged out of you, unforgettable, unforgiveable moments when your life has uncontrollably changed: When my mother could not remember the name of her husband and every day when I have to make the decision about whether to be a daughter to my mother or mother to my daughter.
This week is Carers’ Week and we know that family carers play a crucial role in supporting patients at the end of life, enabling care at home, and preventing hospital (re)admission (Ewing and Grande 2018). Furthermore, carers require support within two broad areas:
- as ‘co-workers’ in supporting patients, to ensure carers have the information, skills and equipment for this role
- as ‘clients’ in their own right to preserve their own wellbeing and health (Ewing and Grande 2013)
I have also been reflecting on the challenges of what has been described as being at the juncture of the public and private domains of caregiving, where one must constantly negotiate the boundaries between professional and personal caregiving roles (Ward_Griffin 2004). Other studies have noted that nurses providing care for their own relatives have specific caregiving needs (e.g. quality of life, personal and professional boundaries, disempowerment and positive aspects) due to their dual role as a health professional and family carer (Mills 2006). Some argue that societal, familial, and self-expectations influence nurses to be family caregivers (St-Amant et al 2014) with both enriching and conflicting experiences as a nurse family caregiver (Quinney et al 2018).
So, as I prepare for Living and Dying in Late Old Age attending as both a caregiver and a nurse, I think to myself, when did I become a carer? When did the everyday routines and interactions of our lives become something different? When did:
Noticing become…assessment Moving become…mobility
A bit slower become…frailty Getting on become…old
Need a bit of help become…loss & deficit What I can do…assets
Having a meal become…fluids & nutrition A chat become…interaction
Doing the laundry become…OT Walking become…physio
Pottering become…wandering Holiday become…respite
Moaning become…emotional support Word loss become…confusion
This Carers’ Week I am thinking about the duality of being a nurse and family caregiver, remembering the moments that my breath is pushed or dragged out of me and cherishing the moments that my breath is taken away.
For more information visit Hospice UK: Family and Carers
Carers’ Week runs till June 17.
Ewing G, Grande GE (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end of life care practice at home: a qualitative study. Palliative Medicine; 27(3): 244-256.
Ewing G and Grande GE. Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change. London: Hospice UK, 2018
Quinney, L., Dwyer, T. and Chapman, Y., 2018. Tensions in the personal world of the nurse family carer: A phenomenological approach. Nursing inquiry, 25(1), p.e12206.
St-Amant, O., Ward-Griffin, C., Brown, J.B., Martin-Matthews, A., Sutherland, N., Keefe, J. and Kerr, M.S., 2014. Professionalizing familial care: Examining nurses’ unpaid family care work. Advances in Nursing Science, 37(2), pp.117-131.
Mills, J. and Aubeeluck, A., 2006. Nurses’ experiences of caring for their own family members. British Journal of Nursing, 15(3), pp.160-165.
Ward-Griffin, C., 2004. Nurses as Caregivers of Elderly Relatives: Negotiating Personal and Professional Boundaries Les infirmières agissant comme soignantes auprès d’un proche âgé ou comment négocier la frontière entre vie personnelle et professionnelle. CJNR (Canadian Journal of Nursing Research), 36(1), pp.92-114.