Resilient caregivers 2023 03 28

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 adequate health system support. Family caregiver resilience needs to be measured in health outcomes for care recipients AND family caregivers.

Until we have a systemic response to address the inequity of unpaid family caregiving infrastructure, we are going to have a burgeoning health crisis with both care recipients and caregivers requiring emergency or unplanned health interventions.

Louise Kinross quotes Brianna Suslovic from the University of Chicago in her recent article titled "When resilience is part of the problem", "The experiences of disability and caregiving are both areas in which prioritizing resilience is a misguided impulse. It amounts to trying to 'fix' people who are most vulnerable to ongoing oppression and bias."

Caregiver resilience is not the problem. Systemic negligence and the devaluing of care in our society is the problem. These are problems that we can fix when we have the social and political will to change the system. These are socially and politically constructed problems.

We don't need to instruct family caregivers to improve their resilience. We need to focus on improving resilience in our health delivery systems and our support for care infrastructure. Focussing on individual family caregivers is a distraction from the real issue that needs attention: our health system is failing and the health and well-being of family caregivers are symptomatic of this failure.

We need to stop normalizing the structurally induced suffering of family caregivers. We need to focus on social and political change to adequately support the unpaid, uncompensated family caregiver rather than blaming them for their lack of resilience by telling them to, "take better care of yourself."

We need to frame the deficits in the healthcare system and neglect of family caregiving infrastructure as a social justice issue. We need to ensure equitable distribution of resources where they are needed and where they will do the most good. We can only understand family caregiving in terms of deficits, inequitable distribution of resources, and caregiver resilience if we actually study the work that is being carried out in family homes on behalf of the healthcare system.