The Angry Caregiver

  If we are going to change the face of family caregiving we need to re-conceptualize our understanding of who is on the family caregiving team. The burden of family caregiving has been defaulting to daughters and now, even granddaughters of our frail elders. We need to build our family caregiving teams to include our sons and grandsons.  There is no reason for the predominance of caregiving falling onto women's overworked shoulders other than historical and cultural bias. We can only change these conceptions by working at a historical and cultural level to re-set these defaults. We need to re-calibrate our values, assumptions and workload distribution. As a society, we need to value caregiving as a noble pursuit, that ascribes cultural capital to those who put in the time. We need to dignify the work of caregiving in the family home and make it unthinkable that anyone would leave a single family caregiver in charge of providing care for 300, 400 or 500 hours a month. We need ...

  Everyday work is being assigned to millions of private citizens that entails life and death decisions, health and safety risk, and operations management on behalf of the health care system.  This work assignment is done during a family health crisis when family members are responding to a family emergency when a family member is no longer able to fend for themselves. The scope of the work is only partially defined - typically the specific instructions from the health provider to dispense medication, oversee therapy, and, in some cases, carry out wound management or other medical maintenance tasks. The undefined scope of the work assumes the family care responders will ensure the needs for shelter, transportation, clothing, food, financial security, emotional and mental health, social connection and personal care are provided.  There is no process of formal work assignment. There is no framework for organizing the work - planning, traceability, accountability, reporting....

  When our family members can no longer fend for themselves a family caregiver emerges to take up the extra workload. This extra workload is handed over to family caregivers as an essential component of 'early discharge', 'hospital to home' and 'aging in place' healthcare policy. The first formal occurrence of that extra workload is often identified during the handover consultation in a doctor's office or healthcare institution. This handover consultation typically marks the conclusion of a health crisis and a milestone that begins a new healthcare reality for the patient and the family caregiver.  The nature of that extra workload varies as individually as the medical diagnosis facing the patient and the caregiving family. The family caregiver receives instructions for care as the health provider discharges their patient from their direct care. These instructions are often given verbally, there might be a quick demonstration of specific medical procedures t...

  It is not difficult to identify the onset of family caregiving work. It occurs the moment there is another person in the room with the health provider because the patient about to be discharged cannot fend for themselves.  In this moment, the family caregiver is taking on work that is not quantified, supervised, or traceable. This work is not accounted or planned as part of the overall infrastructure of the health system. The fact is that if that family caregiver was not in the room to receive discharge and care instructions, the patient they are discharging would be back in the institution in short order. We know there is work being assigned because the family caregiver is given instructions on specific medical, therapeutic or health tasks essential to positive outcomes for the patient. Essentially, there is a transfer of patient care and in that moment, there is currently no organizational or systemic trigger that ensures sufficient transfer protocols include the work bein...

  The invisibility problem of family caregiving exists across all stakeholder groups including: Government legislation Health authority governance Health provider protocol General public knowledge Private citizens providing family caregiver infrastructure and performing family caregiving duties This invisibility is a growing issue as legislation, policy and protocol are initiated for 'early discharge', 'hospital to home', and 'aging in place' without adequate evidence based data to understand the true cost of family caregiving. The invisibility problem is not going to be addressed by those institutions who benefit from the lack of data by offsetting the cost of care from institutional settings to family households. The invisibility problem is not going to be addressed by social and cultural norms that historically undervalue, devalue or deny the true cost of caregiving, including family caregiving. The invisibility problem is not going to be addressed by family ...

Before bringing home your family member for 'early discharge', or 'aging in place', or 'hospital to home' family caregiving. "What is the level of caregiving coverage that is going to be needed?" Followup questions could include,  "Will the caregiving duties required 24 hours a day, 7 days a week?"  "What are the specific caregiving tasks that our household will be expected to perform?" "What supports are going to be provided to our household to take on the responsibility of this care?"   "If we can't care for our family member, where will they go for their caregiving?"  "What are our family member's likely health and wellbeing outcomes if we take care of them at home or if we cannot care for them and they have to go somewhere else?"

  It is very difficult to put a value on something that is not measured, traceable or accountable. That is the situation with family caregiving. The entire economy and healthcare system is depending on family caregiving infrastructure for their continued existence. One of the key arguments supporting such drastic shift in healthcare infrastructure from institutional caregiving to family caregiving is that "it costs less". However, there is no actual cost accounting research that backs up this assertion.  The work of family caregiving is unknown. We have circumstantial evidence of the negative impact of family caregiving on the health and well being of the families who provide caregiving beds and services in their family homes. We also have financial calculations showing the proportion of caregiving that is being carried out in family homes in relation to commensurate care infrastructure in institutional settings. We do not have any quantitative time / material studies that sh...