Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study (Report‪)‬

Chronic illnesses that become terminal bring losses for both ill people and their caregivers. Less attention has been focused on the losses entailed while caring for a chronically ill person than on those that occur after death. Advancing illness encompasses both physical loss, which occurs when something tangible becomes unavailable (for example, functional decline or dependence) and psychosocial loss, which results from changed social interactions (for example, the need for assistance with activities of daily living) (Rando, 2000). Losses begin with the onset of symptoms, such as decreased function and increased fatigue, continue as the symptoms of a progressive illness become more pronounced and intensify during the active dying process (Loscalzo & Brintzenhofeszoc, 1998). Losses continue to emerge long after the person dies. There is growing recognition that caregivers experience normal anticipatory grief while engaged in the caregiving process (Sanders & Saltz Corley, 2003). "Caregiver grief" has been described as the intellectual, affective, and existential elements of changing care demands and expectations (Meuser & Marwit, 2001). Because individuals' grief varies in intensity, duration, and form of expression, caregiver grief accompanying different illnesses is likely to involve distinct features and dynamics (Cart, House, Wortman, Neese, & Kessler, 2001). For example, the caregivers of people with dementia experience anticipatory grief and a long goodbye (Walker & Pomeroy, 1996).