Caring for Partners of a Dismal Dance: Listening for Spiritual Suffering in Family Caregivers of Patients with Huntington's Chorea (FR265)

• Published in: Journal of pain and symptom management 2022-05, Vol.63 (5), p.824-825
• Main Authors: Marterre, Buddy, Hennig-Trestman, Bonnie, Baker, Tracie, Fox-Davis, Debbi, Leidl, Bethany
• Format: Article
• Language: English
• Subjects: Adult sons; Age of onset; Anger; Caregivers; Chorea; Cognitive-behavioral factors; Coping; Dance; Emotions; God; Grief; Huntingtons disease; Interdisciplinary aspects; Involuntary; Listening; Narratives; Neurodegenerative diseases; Neurologists; Neurology; Palliative care; Pathology; Psychological distress; Spirituality; Suffering; Suicide; Suicides & suicide attempts; Sympathy
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2022.02.285

Outcomes 1. Diagram the clash of movement, emotional, behavioral, and cognitive regression in Huntington's disease (HD); explain how this devastating disease affects families and caregivers 2. Identify and interpret significant themes of HD caregiver spiritual distress by listening to a caregiver's story; define and clarify challenges and opportunities in supporting HD families with expert palliative care 3. Discover and normalize suicidality and anger (at loved ones, others, society, and God) in HD; integrate with interdisciplinary neurology-based teams to foster more compassionate engagement and psycho-socio-spiritual support for family caregivers of patients with HD Huntington's disease (HD) is a rare neurodegenerative disorder with unique manifestations where involuntary choreiform movement, emotional, behavioral, and cognitive afflictions collide. There are no treatments for this dismal dance. HD imposes big strains on families and caregivers with its variable age of onset, prolonged course, and autosomal dominant hereditary transmission. Half of children of patients with HD—who may care for their regressing parent—will manifest the disease's pathology later in their own lives. Strong emotions and intense spiritual distress haunt caregivers as they try to “dance” with their loved ones who are slowly degenerating before their eyes. Our group recently reviewed the literature on the spiritual suffering, grief and loss, and coping mechanisms that caregivers of patients with HD experience; no articles were published in palliative care journals. Education on HD is uncommon. HD neurologists apply primary palliative care principles to patients with HD who avail themselves of their care networks, and yet HD presents unique hospice/palliative care opportunities that need identification and further definition. This interactive session will illustrate HD caregiver spiritual suffering via three case narratives, highlighted with video clips folded into a MSW's story: her and her daughter's saga with their husband/father, her father-in-law's case, and the account of an HD patient's mother who cared for her adult son until his acute quadriplegia from a fall. Participants will use their narrative medicine skills by listening to, absorbing, interpreting, and acting on her story. Interactive dialogue sessions will help presenters and participants alike identify and clarify challenges and opportunities to integrating expert hospice/palliative support of HD family caregiv