Lived Experience - 2024 10 28

 

Yesterday I attended a meeting of our local community group, 'Age Against the Machine'. The purpose of this group is to build family, friend, neighbourhood and community resilience to support each other when we can no longer fend for ourselves.

I shared what I have learned these past three years of operating a palliative care, then a long term-care, and then a hospice care bed in my home so that our Mom could spend her final years and days at home with her family.

The absence of cost accountability for family caregiving in legislative, policy and institutional strategy is alarming. It places an unaccounted burden of care on families who strive to make up the functional difference between what their family member can do for themselves and what they can no longer manage.

The work of family caregiving has remained invisible to research priorities, and health provider initiatives that implement patient care programs such as, "Hospital to Home", "Early Discharge", and "Aging in Place". The functional gap of caregiving is assumed to be the work of an informal caregiving network rather than the formal responsibility of the health system. 

Institutional efforts to transfer service supports to home-based care settings are complicated, inadequate, and difficult to access. The cost of navigating support for services in-home outweighs the value of finally receiving those supports. Family caregivers tend to shrug off the extra work and decide they can manage in the short term, not knowing how long this management will last, nor the toll it will take on their family health - financial, career, physical, emotional and mental.

One of the key gaps in understanding the work of family caregiving is a dearth of stories depicting the lived experience of the family operation of previously institutionally-based beds. These stories are multi-layered, complex, and cross lifetimes. We need these stories to make visible the work of family caregiving. Family caregiving needs to be made visible if we are going to hope to influence research agendas, funding priorities, and a functional flow of resources to families who are doing the work of providing critical beds in an over-burdened healthcare system.

Family caregivers often feel isolated and alone in the difficult, important work they do to fill the gap between what we can do for ourselves and when we need help to get through the day.

This storytelling project is going to incorporate what we are learning from research literature into the context of family caregivers lived experience. This is how we are going to change the system. This is how we are going to age against the machine.