The following blog was written on 29th October 2023 and is republished here with permission.
Today is the first International Day of Care and Support. I have both witnessed and practiced caregiving, which at its best, is a profound practice of love and attention.
I have been privileged to serve both a hospice volunteer and family caregiver for my sister who, as a single woman living alone, also paid a caregiver service once she became bedbound.
Some of the caregivers I got to know during her long and arduous decline, like Lisa, pictured below speaking at Ruth’s memoral service, were among the most dedicated professionals I have ever met, exploited by the wage economy while blessed in the economy of grace.
Caregivers are underpaid, undervalued and invisible members of the formal and informal (paid/unpaid) workforce according to this ILO (International Labor Organization) Report which analyses the ways in which unpaid care work is recognised and organised, the extent and quality of care jobs and their impact on the well-being of individuals and society.
The supply of caregivers is not keeping pace with increasing global demand.
One study put the deficit at 13.6 million formal long-term care workers. The crisis of informal caregiving leaves leaves its mark on overstressed family members and means many seriously ill people and frail elders are abandoned with minmal or no help for their daily needs.
Even in developed countries, few family caregivers receive stipends or government support for their essential contribution — or “shadow work.” Most are women, who lose employment and entitlements when they leave the workforce to care for a loved one.
Paid caregivers don’t fare much better, generally earning less than the minimum wage, receiving no benefits, and as a rule not reimbursed for transportation. Many are ethic minorities, immigrants, and refugees from the majority world, the peripheries.
Historically, religious and monastic orders adopted the charism of community caregiving, ministering to the sickest and poorest among us as charity, caritas, love for the abandoned, as the body of Christ.
Some, like the Order of St Camillus and the Sisters of Charity, to name only two, are still going strong to this day. Today’s gospel reading, the great commandment of love in Matthew 22:34-40 “You shall love the Lord your God with all your heart, soul, and mind, and your neighbor as yourself,” sums up the ideal ethos of caregiving, whether sacred or secular, particularly unpaid family caregiving, which is largely a thankless invisible “job” for so many, mostly women, many of whom are older. Your neighbour, as Jesus pointed out in the parable of the good Samaritan, is the hurt and vulnerable stranger you come across in your daily life.
Because religious orders and family caregivers only meet a fraction of the growing global need, advocates for equitable care are looking to local communities (the Compassionate Communities movement) and the public sector for support.
Naturally, the private sector sees the care deficit as a market opportunity, and the most structurally vulnerable (people living in poverty and those with disabilities for instance) as sources of profit whose care can be subsidised by entitlement and insurance revenues. This colonisation of care work by the private sector is creating a new lower caste of care home workers with few, if any, labor rights.
A future that puts caregiving at the heart of a society’s priorities could reconfigure economies to promote true human and ecological flourishing. Prioritising caregiving as a profoundly relational practice of love and service to be valued and remunerated as a public good could transform sterile post-industrial societies committed to individualism and autonomy at the expense of the vulnerable other that is their own creation. The UN’s commitment to calling attention to the need for quality caregiver employment and sustainable benefits for family caregivers, is a good first step.
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Katherine Pettus is a Palliative care paraclete advocating for the right of patients to receive internationally controlled essential medicines to relieve preventable pain and suffering.
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