Conclusion

Abstract

This chapter proposes how positive change can be made for families who are enacting skilled medical labor. Caregivers' journeys with care recipients reflect varied experiences in interactions with medical professionals and in the training they receive. Though many caregivers experience feelings of anxiety and worry, they say they “do what they have to do” to provide care for those they love. It is the relationship with the care recipient that motivates their labor, and despite some ambivalent feelings, many have strong feelings against institutionalization. Positive change can be made for families who are enacting skilled medical labor and improve the work process for caregivers, care recipients, and nurses alike through robust national policies that support family care work are in order. Home support would also increase the confidence of caregivers and reduce emotional burdens by having credentialed nurses and health care professionals make regular home visits and providing more in-home support are essential. Adequate work leave policies for families should also be in place. The financial needs of caregivers should be considered, including their loss of jobs and income. The existing policies have been fragmented, state driven, targeted only to certain care recipients and their caregivers, and highly dependent on complicated Medicaid waivers. It is time to recognize and compensate caregivers for the work they do and to make sure that care recipients also have adequate support.