Caregivers’ Grief: I Said Goodbye at Twilight

By Camille Cusset

Mourning someone’s passing is a process that varies from one person to the next. In the case of caregivers or naturally helpful people, this process is made more complex, since several sorts of grief arise after the death of someone they took care of. Nonetheless, the use of rituals aimed at rendering homage to the life of the deceased person can be crucial to healing for caregivers, say the experts.

In her book Tu ne sais plus qui je suis (You Don’t Know Who I Am Anymore), retired psychologist and writer Édith Fournier recounts the painful separation from her husband, director Michel Moreau. He suffered from Alzheimer’s, and after seven years of caring for him at home and witnessing his slow decline, Fournier had to abide by his departure for a CHSLD long-term care centre before his death.

In her personal account, she explains how she refused to use the local health care centre’s laundry service so that she could stay in contact with her husband. For her, a shirt to iron or the smell of his cologne was a “question of healing.” It was her own personal ritual.

Facing Grief

According to Charlotte Beaudet, clinical coordinator with Appui pour les proches aidants (Support for Caregivers), caregivers in this situation also mourn the passing of their own role in having helped the deceased. That can make their bereavement process even harder to bear. “Many define themselves by the fact that they are caregivers. There’s grieving the deceased, but there’s also grieving the end of the role, a role which has its rewarding side,” she explains.

Indeed, support from an organization that supports naturally helpful people doesn’t automatically mean that the grieving process is going to go more smoothly for them. Beaudet says that there are people who receive help from their services, but bereavement is still difficult. “The way the grieving is handled will depend on a person’s resilience,” she concludes.

Accompanying a loved one as a caregiver doesn’t automatically have an impact on the length or the difficulty of the bereavement. “Everything depends on the link between the caregiver and the person who was helped, the investment of emotions and energy,” says Laurence Villeneuve, psychologist and president of the Regroupement des psychologues en gérontologie (Association of Psychologists in Gerontology).

According to the department of health and social services, naturally helpful people provide support, occasionally or continuously, to a member of their entourage who has a temporary or permanent incapacity, and with whom they share a bond of affection, whether that bond be familial or not. There are around 1.5 million caregivers in Québec, about 17% of the province’s population. Among them, 58% are women and 42% are men.

In a situation involving major illness or the end of the life of a loved one a caregiver can contribute to improving their life when they’re vulnerable. Assistance can come in many forms, like transport, coordination of home care and healthcare, or housework.

Assistance can also get more intimate, in the form of personal care, or of emotional and psychological support. In terms of statistics, caregivers take on anywhere from 70% to 90% of the responsibilities of people who are deemed as being incapacitated, according to information on the Association des proches aidants de la Capitale-Nationale (Association of Caregivers in the National Capital Region) website.

Complex Emotions

Maintaining psychological, emotional and physical balance is complicated for caregivers. It’s a theme that Fournier’s book explores more than once. Distress, fatigue, loneliness, powerlessness and guilt: this non-exhaustive list covers the range of emotions that caregivers can experience. “Generally, those who suffer the most are those who went too far in pushing their own limits. They (often) realize too late that they’ve exhausted themselves,” Beaudet explains.

In terms of emotions, Villeneuve says that the caregivers’ reactions can be diverse over the course of their bereavement. These reactions will depend on the context of their accompaniment. “Some will be confronted with ambivalent emotions, like sadness, or a sense of being set free,” she says.     

Villeneuve describes the death of the person being assisted – from the caregiver’s perspective – like this: “It’s as if they’ve had to carry a great weight for a very long time. When they put that weight down, they lose their balance.”

What Rituals Bring

The presence of rituals is apparently an invaluable help in the grieving process.

Taking the time to refocus on certain actions – those that underline the life of the deceased person – can get caregivers through their grief. “Some will go to meetings, or talk to the deceased. Allowing access to these rituals, and being there to listen to those in mourning, is of significant aid to caregivers,” Villeneuve says.

According to the psychologist, it is important to mark the end of the life of a cared-for person. Rituals allow us to say goodbye to the deceased and to turn the page – which will probably never be totally erased or forgotten, because love never dies – in order to continue on our path in life.

– As seen in Reflet de Société, Vol. 30, No. 4, April 2022  

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