Bridging the gap - 2023 05 18

 

I tell my story of family caregiving to make sense of the baffling experience of providing family caregiving infrastructure in an inadequately understood health system. It isn't that we begrudge the opportunity to take care of our frail, elder. It is that we cannot fathom the logic that puts both our frail elder and our family care infrastructure in jeopardy. The more successful we are at looking after Mom, the longer she lives and enjoys her life at home. The longer she lives, the more our family caregiving resources are depleted. 

The work of caregiving is deeply personal and intimate. The caregiver is providing support for the body, mind and spirit of their care recipient. They are managing the medical, social, familial, legal, financial, and physical dimensions of the world of their care recipient. They are entrusted with this care, often with inadequate preparation and insufficient supports.

There is a catastrophic disconnect between government and health system leadership and the day to day realities of providing caregiving, in particular, turning our private family homes into extended care infrastructure and our family caregivers into extended healthcare providers.

Telling our story of family caregiving involves telling the story of our personal and intimate life providing care in our family home.

Family caregivers are suffering the brunt of this disconnect as policies to send patients home (hospital to home, early discharge) or keep patients home (aging in place) are not informed by evidence based data from the family caregiving setting. There is no dataset quantifying the time and tasks of providing family based caregiving. There is no research documenting time and motion studies of the work taking place in millions of households. There is no assessment of the proportion of health resources flowing to institutional health providers in relation to the flow of health resources to family caregiving infrastructure, in relation to the amount of caregiving work that is being provided in these two settings.

Family caregivers take up the responsibility of caregiving for family members no longer able to fend for themselves because they see no other viable option. This responsibility entails life and death decisions, risk management, operations management, project management, medical management, financial management, and property management (to name a few). They take up these responsibilities in a vacuum of knowledge, experience and information. They don't know what they don't know, they just know they have to do this work or their family will suffer.

We are entrusted to protect the health and well being of our care recipient, at the same time, the entire system of support we are providing is depending on our ability to maintain this care infrastructure. The integrity of our care infrastructure is depending on us telling the story of the work of family caregiving to connect to government and health leadership so there is adequate understanding of the burden of work we have taken on in our family. We need to protect our care recipient and tell the story of this burden of work, which is, by its nature, personal, intimate, and often, medical.

At the same time, family caregivers are not bound by any ethical or professional codes or standards, their work is carried out in a quasi-informal situation. They do the best they can with what they have, but what they are given is precious little compared to what they need.

How are family caregivers to portray the day to day realities of the work they carry out providing family caregiving when the nature of that work is intimate, personal and, often, medically determined?

How will we ever know what it means, what it costs, what it entails, to incorporate family caregiving into our health system policy when so many don't know what they don't know?

How do we bridge the gap between what the work shouldered by the family caregiving and the government and health leadership that load more work burden onto family shoulders?

If we have no record of the work being done in family caregiving homes how do we develop appropriate policy frameworks and resource assignment to ensure the work is being done to even a modest baseline?

How can family caregivers tell their stories to make the connection between family caregiving infrastructure and government and health system leadership? How can we foster empathy for family caregivers who lack the most basic resources to carry out their caregiving responsibilities?

I am in the middle of these questions. I am looking for solutions. I want the best for my Mom in her last months and years of her long life. I (and my family) need to survive the mission we have undertaken.

Our solution is to make our care recipient part of the storytelling team. We will read and discuss our dispatches toward building better understanding and support of the burden of work and the unprecedented opportunity of providing family caregiving infrastructure.