Family caregivers' daily life caring for a spouse and utilizing respite care in the community

Abstract

Although the workload of family caregivers has been a core topic in society, these problems are still underestimated when planning support for them. The objectives of this study were to show how family caregivers experience daily life when they care for a spouse at home, and to elucidate their daily life when utilizing residential respite care. Eighteen caregivers > 65 years old who cared for spouses with neurological disorders were interviewed. Content analysis was used. Two main themes emerged: ´Developing a role as family caregiver´ and ´Satisfaction with daily life depends on the quality of care their spouse received´. Family caregivers’ experiences of daily life at home involved helping their spouses with basic needs and meaningful activities. When they handed over responsibility to residential respite care institution they sometimes felt guilty to leave their spouse there. Continuous information and communication regarding their spouse’s health and confirmation of good quality of care was of great importance for their own well-being. Otherwise they could not make use of the relief period to recover from their caring role. The role of the family caregiver was complex. They need continuous education and support to feel satisfied with their daily life.