Table 4 Themes, Subthemes and codes

Indirect Costs of Caregiving

a. lost employment, benefits, and career goals

b. caregiver distress and poor wellbeing

c. time costs

work disruption, prolonged hospital stays, leave, absences, part-time employment, career sacrifice, put work on hold

stress eater, eat to cope, felt working under crises, sleep disruptions, no relaxation time

home bound, no time to self, no personal life, had to be present at home always

Direct Costs of Caregiving

a. financial Consequences

b. using pension plans and health coverage benefits

difficulty paying bills, using retirement money and savings, cutting down expenses on meals and groceries, guilt of not being able to fulfil wishes of dying care recipient

pension pay, rely on income, rely on retirement savings, social security benefits

Barriers in navigating financial support systems

a. financial decision making and documentation struggles

b. difficulties in accessing savings and health coverage benefits

no help or support in making decisions, lack of guidance on Medicare and Medicaid, insurance, and healthcare benefits, complex paperwork

difficult to access funds, completing transactions alone, legal complications, technical issues, uncertainty about future