Spending the weekend with my 4-year-old grandson. “What should I write my post about this week?” I asked. “Chrysalis. Butterfly. Transformation,” he said. What words, what concepts from the mouths of babes. I spoke with two caregivers this week about the transformation in their lives when their family member received a sobering diagnosis. What did the diagnosis mean? Who would be the caregiver? How would it affect the rest of the family? What does quality of life mean? One caregiver took the role consciously, another found themselves to be caregiver without deliberation. One kept working, the other stopped. One had a family meeting, the other assumed the role with little discussion. One had backup and support, the other didn’t. One person with a diagnosis was completely engaged, the other in denial and depressed. Whatever the situation it’s a transformation for the caregiver. Life is out of whack, out of balance. I continue to hear about the aloneness of caregivers feeling powerless and directionless. The transformation to butterfly is wonderful and awesome, to caregiver unsettling and awesome. Support the caregivers, help the helpers.
Get New Posts via Email
Your support is appreciated
Subscribe to my YouTube channel:
Search This Site
music magic lever health goals sax Blue Button Community Health Recovery palliative care policy trust gratitude apps coronavirus CEO of Your Health Behavioral Health habits Sickle Cell chronic illness Participatory Research EMR Determinants of Health Data improv innovation clinical decision support podcast wheelchair PTSD Young Adult People at the Center of Care safe living portal storytelling care planning Covid19 decision-making MS Medical Record informed decision-making resilience health literacy transitions self-care EHR Covid-19 ePatient evidence coaching leadership Pain Advocates health partners stress Best health chronic pain lived experience tpfalumni CDS Impact Learning Health choices relationships learning young adults Exercise Holocaust technology patient experts community Care Partner Failure grief health team diversity podcasting patient engagement Just-in-Time decisions PHR person-first consent threshold pediatrics research pain management end-of-life PCORI inclusion Rest adherence multiple sclerosis goals mindfulness caregiving superpower questions interoperability caregivers shared decision making advocacy engagement Health equity