Lessons from Family Caregivers: Giving Voice to the End-Of-Life Caregiving Experience

In the U.S., the number of family members caring for a loved one who is seriously ill is steadily rising as the elder population increases, medical advances have people living to older ages, and hospital stays become shorter. Taking on the role of caregiver requires enormous life changes, yet the work is often “invisible” as the focus of everyone, including the caregiver, is on the needs of the loved one. For those whose loved one is terminally ill, there is the added difficulty of coping with the loss that death will bring. This phenomenological study used semi-structured interviews to explore the lived experiences of twelve rural U.S. caregivers whose loved one had died within the past three years. Former, rather than current, end-of-life caregivers were chosen for the perspective they would bring to recounting the experience. The caregivers identified challenges such as witnessing the deterioration of the loved one while being unable to prevent it, putting their lives on hold in order to care for the loved one, financial impacts that for some were devastating, the difficulties of addressing death and dying within themselves and with their loved one, struggles with the medical community, social community and family members, and the multitude of different and often concurrent emotions that accompanied their experience. In addition to further support and respite for caregivers, the study revealed needs in three areas: easily accessible information sources for caregivers at a local level; avenues for better communication with the medical community; and awareness-building for issues of both caregiving and death and dying. The study also included photographic portraits of each caregiver. These will be used in an exhibition with interview excerpts aimed at raising awareness of the issues of caregiving