2023-11-28 17:10:05
Day following day, Mrs. B., particularly involved in caring for her mother-in-law who suffers from Alzheimer’s disease, writes down information in a diary. This information relates to a significant event that took place during the day or week, to one’s current emotional journey, or to things to do in the near future.
This photograph uses the overprinting technique to represent the overview of ten weeks (January to June 2021) which were permitted to be reproduced by Ms. B. This photograph also serves as an excellent testimony to show the accumulation of elements constituting the mental load mobilized every day in the caregiver’s work.
“Mental load is “the fact of having to think simultaneously regarding things belonging to two physically separated worlds”. » (Monique Haicault, 1984)
Mrs. B is one of the 9.3 million caregivers in France who take care of a relative (direct or indirect), who keep silent regarding their need for help and whose health is deteriorating day following day.
Social science research on caregivers: a vulnerability that should not be said or shown
The involvement of this caregiver in her daily work was important even though she had tensions in the past with her mother-in-law who constantly pointed out her intellectual superiority. This document shows how the humanity of the caregiver transcends the tensions that appear in intra-family relationships.
Today, the patient is in a medical establishment, Mrs. B. is no longer responsible for helping her as before, but she is no less completely freed from the mental burden. During the interview conducted on the day the photo was taken, Mrs. B. confided to us, not without emotion:
“Where is the limit of acceptable?
The deterioration of a patient’s health is not acceptable.
She said to us, holding my husband’s wrist and mine: it’s not possible that there isn’t a way to make me die?
But for a while we no longer understand anything she tells us.
Now we don’t know what’s going on in his head; I’m still wondering how we can let her live like that, she would never have accepted.
The health staff asked us to stop coming so regularly.
I don’t want to live like this, or make people live like this. »
The personal, even intimate, nature of this document and these testimonies usually makes it difficult for researchers to access. Only research projects that are in the medium and long term promote a bond, between researcher and caregiver, which can go beyond what the research project initially planned: personal invitation to significant family events, sincere thanks through long emails, voice messages full of emotion… and provision of documents of an intimate and sensitive nature referring to a form of vulnerability which must not be said or shown. This type of document thus constitutes rich, unique and unique material for research in the human sciences.
Furthermore, these difficult-to-obtain documents make a confrontation between human sciences and art – here between researchers and professional photographer Illés Sarkantyu – more interesting.
This captured moment brings the subjective look of the photographer, which he delivers to the general public. This photograph shows us how important it is to decenter our gaze, to reflect together on the question of care and, in fineto develop public policies in the area of dependency and old age.
It has been 40 years since the notion of charge mentale was introduced by Monique Haicault in a sociology article “The ordinary management of life in two”. This notion has established itself in the public space more recently, for example in 2021 with the work of Aurélia Schneider, psychiatrist, specialized in behavioral and cognitive psychiatry, but especially with the comic strip by the author Emma “Had to ask » initially broadcast on the Internet.
However, we note that the mental load is not yet scientifically measured and quantified in the field of assistance in the care of Alzheimer’s patients. It is also not studied by crossing it with other variables: exhaustion, stress, access or not to aid measures offered by public authorities, among others.
As long as research in the human and social sciences on mental burden has not produced cross-disciplinary knowledge on what this burden induces in the caregiver, tailor-made care and adequate systems will unfortunately be awaited – formulas for different respite depending on whether the loved one being helped is at the beginning of the diagnosis of the illness or when the illness is well established, centralization of information on the availability of places in nursing homes in a given area, graduated recognition of the caregiver’s needs by the employer, listening devices…
As part of this research project, we asked Illés Sarkantyu, an enthusiastic photographer and filmmaker, to work with us, according to a very open “order” which consisted of accompanying us to the caregivers’ homes to photograph them and capture what, in their environment, attracted the artist’s eye.
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