Seminar in Duqm offers appreciation, understanding to informal caregivers and a listening ear: ‘It’s so hard to do the right thing’

“You are coming tomorrow?” The mother asks her daughter. The daughter answers: “Yes, I will come tomorrow.” “Can you bring bananas?” asks her mother. “I’ll see you tomorrow, mom,” says the daughter. “Oh, are you coming tomorrow? Are you taking bananas with you?”

At the Sense Theater in Duqum, it was a Wednesday afternoon and evening Clos’s daughter Let’s see: A show about a daughter who helps her mother with Alzheimer’s as best she can, as an informal caregiver, but is always left behind. Precisely because it is so close, it is exposed to a lot. Feelings that her mother could no longer handle, and planning that was no longer organized.

The scenes depict recognizable situations that informal carers face as they care for people with dementia. For example, a mother calls her daughter five times in a row, and she quickly loses her temper and becomes confused about the time.

There were 160 visitors in the hall in the afternoon. A further 260 people came in the evening, including informal carers, but also people working in healthcare. After the presentations, visitors had the opportunity to chat with experts in the field of dementia and informal care.

Breaking taboos

“We want to break the taboo,” says Dennis Melinek, president of the Ek Ben Wel Foundation, which started the show. Ek Bin Wale is an organization established in Duqm that draws attention to Alzheimer’s disease and organizes activities for people with the disease.

Melinek: “Alzheimer’s disease and informal care for people with the disease are not fashionable topics. It can be very difficult for informal caregivers to find the right way to provide care. Through the performance we hope to help them a little, and show that they are not the only ones who may not always know .

This is the third time that Ek Ben Wale has organized a symposium on dementia. Last year and two years ago, an event was also organized in the context of Alzheimer’s disease and informal care. This was the first time the focus was on the informal carer, and after the performance there was room for discussion with experts.

Sisters Allie, 58, and Betty, 72, who prefer not to publish their surnames in the newspaper, visited the afternoon show together and talked for a while. They both found the situations played very distinctive. Betty’s sister suffers from dementia, and Ali’s mother also suffered from the disease and died last year.

“It’s very hard to do the right thing for someone with dementia,” says Betty, who visits her sister about twice a week. “The other day she scolded me. I called later to apologize. This was also reflected in the performance. People with dementia no longer always know how to deal with their emotions.

It’s nice to be aware of the doubt

She believes that learning about situations is a good thing. “I also saw doubts in the daughter backstage. I often have doubts about how to handle situations. This performance shows that it’s normal to not know sometimes. Then maybe I wouldn’t do it so crazy after all.”

Between scenes, Mireille Oosterhoff, who played the daughter, told the audience what happens in the brains of people with dementia. The part of the brain that responds impulsively and spontaneously often still works well, but damage occurs to the part of the brain that, among other things, regulates your ability to plan, organize, and take others into account. “Saying that someone has already called five times doesn’t make any sense,” she explains. “In fact, it’s counterproductive. Because they hear the mistakes they made, and they hear them a lot.

“I see what I can become”

After the performance, the audience was asked if they recognized themselves in the situations. Many people identify themselves as informal caregivers, one woman from Buytenpost identifies herself as a mother. “I recognize myself in Oblivion. I see what I can become,” she says from the audience. “This is very confrontational, but it’s also nice to see how it’s dealt with.”

Marja Myers (60) is a case manager at Netwerk Dementie Fryslân and talks to visitors afterwards who feel the need to chat. She explains that talking is very important. “Informal caregivers cannot always tell their story, because they do not want to talk badly about their loved ones. They feel responsible and tend to pick up on everything, but this does not always work. It is important that there is interest, understanding and support for this.”