Disappearing Acts - 2023 09 05

Family caregivers perform their work in a void of substantial system support. They guard their care recipients with everything they have, even as their own lives suffer from the expenditure of effort.

It is time to process the time and finance numbers from August. We have held steady this month despite the absence of family members on vacations. I continue to learn what I can manage, what I can survive, and what I can transcend.

This is work that rarely lasts longer than 24 hours and can disappear  within 5 minutes. For example, yesterday I loaded the dishwasher and got it started, wiped down the counters and emptied the compost. Mom was sitting in her chair watching the tidy up. Once I was done, I asked Mom, "How about a cup of tea?" "Oh, yes!" she replied enthusiastically, "That would be wonderful." 

I put the kettle on to boil, pull out a clean mug from the cupboard, load it with a tea bag, sugar and milk. I checked the clock and realized it was already past 10 am. I turned to Mom, "What about a bun and butter? Would that suit you?" "That would be lovely!" 

I pulled out the soft buns, the butter, a small plate and a butter knife. I buttered the bun and put the used knife in the sink. I checked the dishwasher clock, it had been running for less than 5 minutes.

The nature of family caregiving work, and the domestic service that supports it, is invisible to anyone who has not done it and does not understand it. This invisibility is a persistent problem in perception because it means the work is untraceable, unaccountable, unvalued. However, this work is also visible in its absence, that is, if there isn't anyone taking care of the quotidian management, organization, logistics, scheduling, resource assignment, goal setting, risk management, operations tasks, communication management, medical requirements, housekeeping, catering, finance management, waste management, hygiene, etc. the health and well being of the family, and the care recipient, are in jeopardy. It becomes visible when the dishes are not done, the floors are not swept, there is emotional tension in the home atmosphere, or the window sills are littered with dust and dead flies.

Family caregiving done well is not visible except for the negative impacts on the family caregiver's health and well being. It is in the decline of family caregiver health and well being that we see measurable and demonstrated negative socio-economic vulnerabilities.

The only people who can argue for making family caregiving visible are the family caregivers and their friends and allies who understand the invisibility of the work and the negative impacts that arise from the work - first, if the work is not being done and the suffering of the care recipient; second, if the work is being done and the toll it takes on the family caregiver and the ongoing viability and sustainability of the family home.

We must address the disappearing acts of the quotidian work for family caregiving. It is the only way we are going to bolster our arguments for significant, substantial system change.