Exploited - 2024 06 04

The convenient rationale for shifting caregiving to family homes is that it 'costs less'. This is a false claim that perpetrates a healthcare system that is exploiting family caregivers.

Family caregivers are typically exhausted and burned out. They feel exploited by the healthcare system because their time and material costs are not acknowledged or compensated anywhere near approaching their actual expenditures. 

To access any supports, they have to add work to their already over-extended schedule to research, make applications, provide documentation, etc. The value of supports is eroded by the cost of accessing them.

Family caregivers feel taken advantage because their time and material expenditures are not tracked or accounted in the health care system. They are assumed to give their resources to the care of a family member as an individual choice, rather than a collective, community responsibility. However, there is no real choice, because the alternative to their family caregiving is unthinkable and unbearable, to put their family member in an institutional setting that will, with high probability, contribute to ending their life.

Family caregivers feel taken for granted because there is no systemic accountability for the work they provide to the healthcare system to make up the difference when a family member can no longer fend for themself. They are assumed to do this work because they, largely as women, have the 'free' time to take on 24/7 caregiving work that includes administration, management, facilities, transportation, food and beverage, housekeeping, and therapuetics (medical, physio, mental, emotional, social). It is also assumed that they have the 'free' real estate - a spare bedroom, extra space for kitchen, bathroom, living room, accessability, etc. to house their family member when they can no longer live on their own.

It doesn't take long to burn through family caregiver resources as their family member's needs increase at the same time the family caregivers resources decline.

I am exhausted and burned out. 

I am not going to give up on my family member, whose quality of life, in their last remaining days on earth, would be dramatically impacted if they were put into an institution. 

I feel taken advantage by a healthcare system that does not track my time or account for my material costs of providing a home-based bed and 24/7 caregiving operations. In 2017 it was reported that the cost of operating a long term care bed was $75,000 a year. What would it cost for the bed that we are providing in our home if it was located in a long term care facility?

I feel taken for granted by a healthcare system that assumes I will taken on the burden of these time and material costs as somehow my responsibility instead of the responsibility of my healthcare system. My health and well being are being eroded as I struggle to provide for my family member that can no longer provide for themself. I don't have 'free' time. I don't have 'free' real estate. I pay property taxes, house insurance, utilities, mortgage payments (with interest). I pay interest on my credit cards which are constantly carrying a balance because I cannot actually afford to the costs to my time and household of supporting the expense incurred by my family member who needs the help. 

We are running a deficit in our healthcare system and the evidence is in the state of health and well being of every family caregiver. It is misleading to claim that it 'costs less' to shift the burden of caregiving to families. It doesn't cost less, the costs are currently invisible because there is no effort to track or account for the real costs of caregiving in family homes.