There is ‘no cure for caregiving’: the experience of women caring for husbands living with Parkinson’s disease

Abstract

Background Parkinson’s disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson’s disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers. Objective To describe the lived experience of wife caregivers of male spouses living at home with Parkinson’s disease. Methods A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi’s method. Results Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul’s growth, to support the central theme “there is no cure for caregiving.” Conclusion Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.

Keywords

• caregivers
• caregiver burden
• emotional exhaustion
• parkinson’s disease
• phenomenology
• qualitative research