By Nathalie Van Renterghem
How much space does worry get?
They lie awake at night feeling inadequate.
They have become allergic to words like positivism, self-care and self-insight, because they are all additional "assignments."
They suffer from a structural lack of people and resources.
They had not imagined their days like this.
They feel isolated.
In the morning I had a preparatory briefing for a performance next week, for top managers of a large public organization.
The above is a sampling of what's going on.
In the afternoon, we played a performance for family caregivers.
The above is a sampling of what's going on.
It struck me, all those similarities. Caring for a citizen's good life, caring for a needy neighbor. Misery. What are we doing when care is so harshly deleted from our dictionaries. The dictionaries in which man is narrowed down to consumer.
The busting of health care and services is taking a towering toll.
Not coincidentally, we had recently changed the subtitle of a show from Warm care and self-care, in Care for care. It just becomes too perverse to focus on what an individual can do. More and more I hear myself saying to a potential client, "If the basics aren't right, our workshop/performance/training isn't going to change anything. If people are squeezed like lemons every day, the session is going to be about ... being squeezed like lemons. A day has 24 hours and a human being has 1 head and 2 hands." I often fall over backwards at how normalized it is that people now have to do jobs for 2 or 3, "because yes... we all have to pitch in."
Euh... pardon, how so? How much do the upper layers of corporations, or our rulers tie in then? And where is the protest?
A leaden cloak
Because what struck me much more were the differences.
The top manager does not have to grind about her own salary and housing. Her main task is not the constant and sometimes lonely confrontation with a decaying loved one. A top manager's isolation is the sandwich between policy and employees, not being routinely forgotten by friends and no longer invited anywhere. The caregiver does not have a battery of employees who can go running from closet to wall in his place, in the jungle of procedures to obtain what you are entitled to.
Included in all of that is at least the fact that some people bear a completely disproportionate amount of the total care burden, both physical and psychological.
Today is Caretaker's Day. In addition to giving thanks, let's let it sink in enough that such a day would be much nicer if it involved somewhat normal informal care.
Not as filling the craters in professional care. One woman told how she is told over and over again by nurses that "they wouldn't be able to do what she does." She has been waiting for years for a place in a specialized care facility. "Only eight more have to drop dead now," she noted scornfully.
Not as the biggest bureaucratic woes. When a man recounted being awarded a bounty two years after his wife died, massive recognizable nods followed in the room.
Not as yet another confirmation that people have to work far too much to live, so informal care rarely becomes neatly distributed among family members.
And certainly not as a blindfold where after the flowers they are forgotten for another year with a appeased conscience. We also thought yesterday of all the caregivers for whom it is not even possible to get to such a day of thanksgiving.
Resilience out of necessity
I could also have written about the humor, wisdom and resilience we saw and heard in the many stories told. What a source of inspiration and what a wonderfully beautiful performance we played. There was literally laughter and crying.
"Thank you so much. This is such a happy moment for me." The power of improvisational theater.
But something of suspicion creeps up on me when it talks sloganically about resilience. Resilience of family caregivers, resilience of people with disabilities (you're fat with resilience in your wheelchair when there's no decent sidewalk anywhere), resilience of children and youth with a ton of clinical depression, resilience of drowning teachers, of under-appreciated health care providers, resilience of people-with-cancer-through-the-poison-in-ground-and-air-head-on-you-can-chemo-the-boss-What-is-such-a-chemotherapy-today-the-day-Oops-more-poison-in-twater. Hooray, resilience!
Of course there is resilience. But survival also looks like resilience. And there is quite a bit of surfing on that apparent resilience to then not have to do very much anyway. Ca va do right? I found the contempt with which De Croo spoke about last Monday's demonstration spot-on. By the way, when is it Squeezed Lemon Day?
On the Day of the Informal Caregiver, let us certainly also reflect on the current dismantling of the concept care in general.
And hugging, because there was great unanimity in asking what family caregivers can really use.
More hugs, real hugs.
