“There are so many stories about dementia to tell”

Koens-Custers remembers it as if it were yesterday: “That’s where my passion for people with dementia began. I really wanted to understand how to make the best connection with them. Every shift I would ask myself: how can I make sure the residents have a good day?”

Her work started with pouring coffee and having conversations. “I learned so much just from that. For example, you shouldn’t immediately say to Mrs. Jansen: ‘Come on, we’re going to have coffee now!’ That has the opposite effect. First calmly have a chat and ask how she’s doing.”

Staying calm

Koens-Custers wrote a book about everyday situations that take place in nursing homes. In Ik weet het nog, she gave the caregiver Noortje exactly the qualities that are effective when caring for people with dementia. “Noortje knows how to stay calm, even in unpredictable situations that can arise in Huize Zonzicht, the setting of my novel. Resident Piet in particular can display unpredictable behavior. Noortje is the kind of girl all the residents of Huize Zonzicht like.”

Koens-Custers can give countless examples of misunderstood behavior or signaling behavior in nursing homes. “One resident may constantly follow a caregiver around and want to hold the caregiver’s hand all the time. We also call that clingy behavior. That’s not always pleasant for the caregiver. Meanwhile, the caregiver also has to keep an eye on two other residents who are bickering at the dinner table. One keeps tapping on the table, which irritates the other.”

Losing control over life

By now, Koens-Custers (just like Noortje in her book) knows very well how to handle these situations, and she has been teaching students about geriatric psychology for years. “The most important thing is realizing that elderly people with dementia gradually lose their grip on life. That’s frightening for them. Sometimes people still call them ‘demented people.’ I heard someone say it again yesterday. It makes the hairs on the back of my neck stand up. They are people with dementia. Beyond their illness, they are above all human beings. Try to focus on that. Everyone has their own past, unique life story, and character. Help them find the safety and security they are searching for.”

The novel helps her students look at dementia differently more from the lived experience of people with dementia, and less from theory and facts. Though, Koens-Custers emphasizes, it is not a textbook. “It’s a story about elderly people with dementia, partly based on my experiences with the target group. But a large part is fictional too. Still, my students tell me they learn a great deal from reading it. That’s wonderful.”

Her own mother

Not everything in her novel is fictional. The 76-year-old Marie is the main character and is largely based on her own mother. “Fortunately, my mother does not have dementia. But I still thought it was beautiful to capture her love story with my father and include it in my book.”

Marie has Alzheimer’s disease, the most common form of dementia. She repeatedly confusedly asks for her husband Anton, who has already passed away. Every time she hears this, she becomes anxious and sad until the care staff puts on an Elvis Presley song, the song playing when she received her first kiss from Anton at the fair. “That’s also how the relationship between my parents began.”

She is currently working on a sequel to Ik weet het nog. “Rinus appears only very briefly in the book. He is also a resident of Huize Zonzicht, but he is too ill to leave his room anymore. The next novel will be about him. What did his life look like before he developed dementia? How did it feel when his granddaughter tricked him into going to the nursing home, forcing him to leave behind the beloved home where he had always lived with his family, without being able to say goodbye?”

Koens-Custers sighs: “Every resident has their own story. There are so many stories to tell.”

Win a book

Annette Koens-Custers is giving away a signed copy of her book Ik weet het nog (“I Still Remember”). Would you like a chance to win her debut novel? Then send a short email before Tuesday, June 9, explaining why the novel appeals to you, to recharge [at] ru.nl.

Photo: Pexels.