Column | A mother with dementia

This week former footballer John de Wolf was on the talk show Eva to promote a book about his mother, who has dementia. It’s called Mom, it’s me. This includes the fact that he never visits his mother in the nursing home again. That’s why the title might have been better: Ma, it’s not me.

Apart from that, the question is relevant: to what extent is it desirable to visit a dear family member in the nursing home? People like De Wolf believe that there is a limit to its usefulness or necessity. A year ago I heard him, also on TV, bitterly stating that from now on he would stay away from his mother because she no longer recognized him.

I understood his frustration, but nevertheless found his decision too pertinent. Don’t you want to continue to monitor your mother’s development as she approaches death? Do you owe that not only to your mother but also to yourself? Don’t you also want to be in a position to assess whether she is being treated well in that nursing home?

Instead, De Wolf decided, together with a ghostwriter, to write a book that would be “an ode” to his mother. Who’s going to put it on her bedside table next? So not the Wolf, but perhaps his sister who continues to visit her mother?

The TV broadcast showed that he was extremely shocked when he visited his mother for the first time: he heard her shouting and cursing wildly. Her character had completely changed, from a sweet, caring woman to an unruly dog. This happens more often, as I have learned from responses from readers who wrote to me after my first columns about my wife.

It must be a terrible experience: a partner who shouts at every visit that she/he does not want to stay in the home and that you have to take her/him home immediately. I can imagine that you will then limit visits, but staying away permanently, as De Wolf has decided, does not seem to be the best attitude for himself either. Remorse threatens, just like revenge, it is a dish that will be served cold.

But, I must add, it’s easy for me to say. My wife, like many Alzheimer’s patients, has remained herself in a certain sense: sweet, accommodating, happy with distraction. She still recognizes me and she reacts cheerfully to my arrival – even happier than before, I sometimes say, a joke that she can appreciate, because she still likes jokes.

I know that this is a stage that will pass, speaking is already becoming a lot more difficult for her. I am often asked how often do you visit her? My answer, still: three to four times a week. Too much, some say, because why would you, she doesn’t remember your visit anyway? That’s true. As soon as you leave her, usually at mealtime, she forgets you. And that’s a good thing for her. For me it is a less pleasant realization, but that should not prevent me from continuing to visit her regularly. Because she enjoys every visit, in the moment, even from people she no longer recognizes.

Perhaps this also applies to a certain extent to John de Wolf’s mother. What exactly goes on in the mind of an Alzheimer’s patient will always remain a mystery.

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