ABSTRACT
A looming public health crisis has been identified as the rising number of individuals with dementia, of which most are cared for by family members in the community. Many people in Western societies, however, struggle to comprehend the full effects of this health crisis upon spousal caregivers as the loss experience is inherently ambiguous and ongoing in nature. In Alzheimer’s disease, the individual is still physically present, even while that same person is cognitively and emotionally dying. This chapter explores the accumulation of losses that often go unrecognized for spousal caregivers, especially as they are so consumed with daily caregiving responsibilities. This is articulated in an authentic first-person narrative to provide readers with a sense of the “direct experience” of being the spouse to someone who loses cognitive abilities, and pieces of a life that had been shared together. This description of grief captures the myriad and far-ranging loss experiences that can occur for a spousal caregiver who is caring for their partner throughout the disease process
