November 20, 2011
By Liam O’Sullivan, Executive Director, Care Alliance Ireland
While there has been significant progress made in the past 20 years in the provision of state supports for caregivers in Ireland, we know little about the experiences of caregivers after their caring has ceased or changed in nature.
A recent report from Ireland on the Experiences and Needs of Former Family Caregivers identifies the significant emotional, social and financial impact of the transition from being a full-time caregiver to one of former caregiver. As one participant described it; you’re in no world, your pre-caring world has gone, your caring world has gone, you’re left with no world.
The report also highlights how the skills and experiences of former caregivers can be an important resource within caring organisations through helping with sustaining others who are currently caring.
In the study, former caregivers describe how becoming a full-time caregiver meant losing the life they had with all its social contacts, work and other opportunities. Subsequently, when the person they cared for died or moved to a care home, they experience further losses associated with their role and identity as a full-time caregiver. Losing both these worlds creates a profound sense of loss and emptiness. At the point where their ‘caring world’ has just ended caregivers often feel caught ‘between worlds’. They do not belong to any particular place and do not have any particular label or identity that applies to them. They experience a range of emotional reactions, such as guilt, relief and anger. These are made worse often by the feeling that they have been ‘dismissed’ and devalued by state services and this can become a barrier to ‘moving on’ and creating a new world for themselves. Other barriers include significant money problems and finding it hard to return to the workforce where previous skills for employment had been lost.
The factors that were reported to help former caregiver to move on include family support and support from caregiver organisations. In moving on they begin to care for themselves, keep active, become involved in their community, and ‘get out of the house’. For some former caregivers, ‘moving on’ involves taking on other informal and/or formal caregiving roles using the skills they had acquired while being full-time caregivers.
The former caregivers who took part in this study pointed out that there are no statutory health or social care services in place for them. This is a major issue and there appears to be a need for a formalised system of support that addresses the potential poverty trap and the risk of long-term unemployment as a consequence of opportunities lost during full-time caregiving.
That report found that extending the Carer’s Allowance and more flexibility in social welfare regulations should be considered. There should also be a ‘toolkit’ to help prepare caregivers for when caring ends, with information on what to expect and where to go for help and advice. Former caregivers know a lot about the health and social care services system and the health workers in their area. They would like to be able to share this with new and current caregivers who could benefit from their advice and guidance.
In parallel with this research Care Alliance Ireland has recently published a guide for Former Caregivers;(Ireland-centric)
The handbook has been reproduced in 3 other EU countries, namely Italy, Greece, and the UK with modifications made for each country.
We hope this publication goes some small way towards supporting former caregivers on their new journey through life.
1) Care Alliance Ireland Web site.
Please Give Credit
Day 23: Life After Caregiving – Ireland’s Experience by By Liam O’Sullivan, Executive Director, Care Alliance Ireland is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.