The Angry Caregiver

When we study the actual time and motion involved in family caregiving, I am sure we will find extraordinary caregiver resilience in the face of impossible circumstances.  This is why I find it infuriating when exhausted caregivers are told to "take care of yourself first". The problem with this instruction is that there is a hierarchy of priority for family caregivers. It is impossible to leave our care recipient in difficulty and expect to get the benefit of relaxing and recharging our over-taxed resources. When our care recipient is secure and comfortable, we can pursue our own self care knowing that our care recipient is not suffering. We manage our family caregiver operations in accordance to our own triage protocols. We are delivering healthcare, even if we are not governed by the same policies and protocols that ensure the safety and security of care recipients in an institutional setting. Family caregivers are providing healthcare infrastructure and services without a...

At present there is no quantified data demonstrating the work being carried out in family caregiving homes. We see the impacts of this work in caregiver burnout and emergency hospital admissions. We see the policies that contribute to caregiving crisis when patients are sent home through early discharge, hospital to home, and aging in place without adequate supports for caregivers accounted in the planning. "To properly support caregivers and care providers, public policy needs to consider caregivers and care providers as relevant partners in health and social services. This will require more than just a shift in perspective; it will require bold public policy solutions to address the problems facing caregivers and care providers."  https://canadiancaregiving.org/wp-content/uploads/2022/11/CCCE_Giving-Care.pdf We aren't going to be able to shift perspectives without quantified data from family caregiving homes. We need to show the impact of caregiving provided by families...

There is so much we can do to improve family caregiving outcomes, especially for young caregivers who are putting their time and energy into caregiving instead of building their fledgling adult lives. I detailed a version of this approach in my dissertation - the study we did was on forming self-sustaining communities of practice in teacher education so that new teachers could lead change in the profession with regards to incorporating digital technologies to enable, enrich and enhance learning in elementary school classrooms. The model is based on a theory of cognition that shows how collaborative learning experiences can build a sense of belonging and resilience in groups where individual work is carried out in isolation or in non-supportive conditions. The method utilizes a formal learning experience - a structured course - to create conditions for collaborative, active experiential learning.   These learning experiences are designed to accomplish three concurrent objectives: 1....

I'm starting to work on developing an auto-ethnography to study the time and motion of providing in-home care infrastructure for a frail elder. #work #infrastructure I have identified four layers of family caregiver pressure that aggravate to caregiver burnout if we don't provide adequate supports to maintain home-based care infrastructure (early discharge, aging in place, hospital to home, etc.). #family #caregiving #homebased Layer 1 - responsibility for the health and well-being of a frail elder with complex, deteriorating health issues over an extended period of time; Layer 2 - unpaid service to maintain home-based care infrastructure (supervision, execution, quality assurance); Layer 3 - financial pressure arising from providing significant unpaid resources (time, energy, responsibility) at the expense of paid work; Layer 4 - self-actualization deficit from providing highest levels of time, energy and attention to caregiving with little or no resources left to invest ...

The practices and routines for daily living that kept me on an even keel before caregiving were not robust enough to keep me in good health during caregiving.  Learning to manage the work of caregiving is not the same as learning the work of self care during caregiving. When my care recipient moved in with me I was on a dual learning curve - managing the work of caregiving and managing my self care during caregiving. There is a third dimension of work during caregiving, and that is managing supports for both getting the work done for the care recipient, but also managing the supports to make time for self care away from the care recipient. Self care during caregiving could be understood as four dimensions of work: Work required to maintain health and well being of the care recipient; Work required to maintain health and well being of the caregiver; Work required to marshal supports to maintain the health and well being of the care recipient; Work required to marshal supports to mai...