When a family member has dementia, a visit can sometimes feel difficult or pointless. “That’s not my dad anymore,” actor Wim Willaert said in the program Long live La Feta. Is there a way to cherish the silent slipping away?
“I can’t,” said Wim Willaert. “I think that’s bad,” responded Jani Kazaltzis. Two human sentences, spoken on a Greek island, that tell everything about how dementia can break not only a person, but also his environment. Willaert simply did not manage to pay a visit to his father, who died shortly after the recording of Long live La Feta (Play 4) passed away. The only times he spoke to his father were at his birthday or during family celebrations.
“I end up in an existential depression for two or three weeks after every visit. It is pure sadness”, says an emotional Willaert. Or: “That’s not my dad anymore.” He lit a candle for his parents. No lack of love.
Very recognizable, says television maker Wannes Deleu, who worked for the program at the end of 2018 Before I forget spent a month with his grandmother with dementia in the residential care center. “When my grandmother first arrived there, I also fled from that situation. Talking was no longer possible, which was very frustrating for me. And I knew: even before I’m in the parking lot, she’s already forgotten that I’ve been by, so it seemed frustrating to her. It all felt a bit pointless.”
Reverse care relationship
A month in the residential care center tilted his gaze, but that initial feeling is something that many family members struggle with when they are no longer recognized, confronted with aggression or see a person next to them who is sunk in total apathy.
That dementia is a cruel process, also for loved ones, needs little explanation. “You actually say goodbye to a person in several pieces,” says doctor Luc Tritsman, who regularly gives lectures for Alzheimer Liga Vlaanderen. In addition to the declining memory, there are the personality changes. “Some puffs become magnified, others become microscopic. After that, the smell, the speech, the interest in what is happening around disappears.” The person who once was suddenly seems miles away.
According to Tritsman, the fact that a family member or friend chooses not to visit in those late stages is “very normal”. In any case, it is not easy for many people to accept that dementia reverses a care relationship, says gerontologist Veerle Baert (Artevelde University College). “Suddenly, as a child you can no longer turn to your parent for advice, support or affection. You now take on the caring role, but sometimes family members do not know how to handle that situation.”
Such situations, both at home and in a residential care center, are becoming increasingly common due to the aging of the population. Between 2004 and 2019, dementia gradually became the leading cause of death in Belgium, according to figures from Sciensano. At the moment, Flanders and the Brussels Region have about 141,000 people with dementia, a number that is projected to double within fifty years.
A difficult question that is linked to this: how do we show families the way to a dignified farewell? And does that even exist in dementia? “In any case, it starts with a good understanding of the disease. This requires support from families, through informal care associations or residential care centers,” says Baert.
In many Flemish residential care centers there is already a reference person for dementia who supports care providers and family. “In this way, the theme also becomes more negotiable,” says Bart Reyniers, who holds the position within WZC Sint-Bavo in Wilrijk. “Sometimes carers feel guilty about the move because they think they have failed.” Within that rollercoaster of feelings, it is important not to let love for a neighbor fade into the background.
For Wannes Deleu, one of the most important lessons remains that there is no point in denying dementia. “I remember going to the cemetery with my grandmother, walking past the grave of the man she had been with for fifty years, and it meant nothing to her. But it was mainly me who made something of it, because I really wanted it to say something to her.”
Massaging hand
“In the now, in being together, I still found moments that counted,” says Deleu. Tritsman agrees: “It is important to realize that that person can still enjoy life, even if that valuable moment has already been forgotten in the evening.” For example, he tells how his own father, despite the dementia, still enjoyed the splendor of the clouds by the sea or the scent of lavender. “It remains a terrible disease, but those little moments count. You can always recognize a person in what he can still do.”
When communication disappears, there is still the tactile. “A hug or a hand massage, my mother sometimes enjoyed that a lot in the end,” says Marleen Mesuere, who supervises the family group of the Alzheimer’s League in Turnhout. “You don’t have to visit for hours, half an hour will suffice. Especially the way in which you try to make contact determines whether you get through.”
And yes, sometimes you come back from a bald journey. “Of course it happened that my mother pulled her hand away or that she was not feeling well. But just as often I saw in her mimicry a small moment of happiness. Even though she didn’t recognize me for the last three years.”
