An enigmatic, almost gentle formula, “white mourning” above all carries with it a painful ordeal: that of initiating mourning for a person who is there, very present, sometimes more than she has ever been, but who is no longer the same due to illness. Most often, we speak of white mourning in the context of Alzheimer’s disease, but other neurodegenerative pathologies, such as senile, vascular or alcoholic dementia, confront loved ones with the same dark paradox.
“The spouse in particular faces a difficult reality, because the person he has known for years, even decades, is no longer the same and will no longer be, summarizes Dr. Aimilios Krystallis, doctor at the Psychiatry Service geriatric hospital at Geneva University Hospitals (HUG). And while certain mental faculties gradually die out, others remain, especially those linked to the affective dimensions of the personality. Dealing with this symbolic loss is particularly harsh and is indeed a process of mourning.
total devotion
A laborious mourning, not necessarily saying its name, which generally cohabits with a daily life that is itself trying. “Faced with a person who loses his cognitive faculties, his landmarks, his autonomy, two scenarios often emerge, continues Dr. Krystallis. Some spouses switch to total devotion, taking care of the affected person, like all the daily tasks, without saying a word… And this can last for years, until the day they break down. It is often only then that the family discovers the extent of the problem. Others react in a so-called “defense” mode, rejecting reality and trying to maintain the same life the couple knew until then. But sooner or later, reality undermines these attempts and people crumble.”
But is there a “right way” to face this suffered reality? “There is of course no miracle recipe. The suffering is there and cannot be avoided, but it is possible to deal with it in other ways. And the leads are individual as well as societal,” underlines Dr. Krystallis. Before specifying: “One of the main challenges is to be able to talk regarding what we are going through and to be accompanied.” An obvious step, but not so simple. “Firstly because the current generation of elderly people has often gone through terrible ordeals, periods of war for example, but has not been used to confiding in themselves, even less to undertaking a psychotherapeutic approach. So they endure and suffer in silence,” continues the doctor. The other brake is very concrete, notes the expert: “Reception structures and home help are sorely lacking. Places in day care centers are rare, most often not covered by insurance, and home help provided by volunteers is generally limited to an hour or two per week…” So modest prospects for relief .
acceptance work
And then, there is another challenge, which is played out on an individual and intimate level for the person confronted with this white mourning: a work combining acceptance and taking into account his own needs. “Feeling anger, disappointment, sadness or even frustration is completely normal, and accepting it is part of the process of this particular grief, continues Dr. Krystallis. It is even a necessary passage to integrate the situation, to face it and to position oneself vis-à-vis it. By being aware of what is going on, it is more possible to understand your reactions, to ask for help and to take care of yourself, even for a few hours a week, without feeling guilty.
A healthy approach and a safeguard in itself. “People who devote themselves night and day to their sick spouse very often lock themselves into a painful process, conducive to exhaustion, but also to violence that might also be described as “white”… warns Dr. Krystallis. A reciprocal violence between a suffering person who has lost his autonomy and a valid person, but exhausted. And to conclude: “When a neurodegenerative disease occurs, it is the couple themselves who are struck by the ordeal and need support. Confronting white mourning is therefore certainly a personal, intimate and family challenge, but also a question of society for which much remains to be done.
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Appeared in Planète Santé magazine N° 47 – December 2022
