Sometimes it makes life difficult, but more often it makes it unforgettable and extremely valuable. In anticipation World Alzheimer’s Day (September 21) we have four double interviews in Zin 11. Together, strong portraits of special duos who enjoy moments that they would not be able to experience with anyone other than their sweetheart, their father or their relative with dementia. Such as Hetty van Rijn (1944), who fell head over heels for Jeanne van Schoonhoven (1929), because she breathed freedom.
Hetty and Jeanne
With Jeanne, Hetty could be who she is and do what she always wanted to do. Together they celebrate life and love, as can be seen in the intimate documentary Liefsteling.
French teacher
Hetty: “No, we’re really not always happy. We will try.” Jeanne: “Yes, things are going in the right direction.” Hetty: “We make it a party, as much as possible. We have agreed to always stay together – until it is medically impossible. We’ve been together for 23 years now, but I’ve known Jeanne since I was 12. She was my French teacher. Jeanne was different from the other teachers: young and nice and free. We were allowed to sit on the tables with her, she did that herself. Years later we saw each other again at a reunion and then the spark flew.”
carer
Hetty: “In the early years of our relationship, the roles were reversed: Jeanne then took care of me. I had had hip surgery and she was always there for me. I think carer is just a stupid word. In any case, because I wear ‘jekkies’ and no coats. But also because you just take care of each other like lovers.” Jeanne: “Do I still speak French? Oh yes, even though I always have to get back there.” Hetty: “Our anthem is No, I do not regret anything. We sing it a lot and everywhere. You can also see that in our film darling. Jeanne still plays the piano, which is an enormous support for her.”
Wrong thing
Hetty: “Since the release of the documentary, Jeanne’s memory has deteriorated further. And the tumor in her breast is serious.” Jeanne: “It’s all wrong in my chest. But the pain is still manageable.” Hetty: “That’s right, because of the medication. That tumor came about at the same time as Jeanne’s dementia complaints, now about seven years ago. Together with the doctor, we decided to go for quality of life. And it worked well, I must say.” Jeanne: “We enjoy with buckets.” Hetty: “Now that Jeanne is getting worse, we can go on fewer trips. Going to dance lessons or the theater is no longer possible. And holidays on Terschelling are no longer possible. I think that’s bad, we liked coming there so much. Dancing together on the beach, with those beautiful skies. It is confrontational and a little getting used to, but it is also good at home. We always get through it.”
ice cube eyes
Hetty: “Jeanne lingers longer in difficult moments these days. Then nothing is good and she has those ice cube eyes. Recently, for example, I had cooked extensively, I had really done my best. ‘Well, it’s edible,’ she replied sulking when I asked if it was good. Her mood can change in such a mood for no reason. That makes it unpredictable for me but also for Jeanne. I have become more patient about this. Jeanne can’t help it and there’s no point in getting mad at her. I know she doesn’t mean it that way. But yes, you have to accept it and that is quite a switch. Jeanne is 92, she has had a nice life. We count our blessings even if that doesn’t make it any less sad.” Jeanne: “How will you do after this?”
Hole full of memories
Hetty: “Without you I’ll fall into a hole. But that hole is full of memories. So I come up again. I shouldn’t talk too much about it because it’s not that far yet. And it is the love of my life. But I think I can handle it. Now we enjoy being together. ‘Man, I love you so much,’ I say to Jeanne when we lie in bed at night.” Jeanne: “I can’t answer that, it’s so valuable. It’s wonderful to be able to say something like that to each other.
Liefsteling
The gripping documentary darling was broadcast earlier this year on the NPO. Curious? Look back via NPO Start or on 2Doc.nl. The latter also features a special interview with director Eva van Barneveld.
on the road together
Alzheimer Nederland is working on a future without dementia and on a better life for people
with dementia and their loved ones by: providing information and information, making research possible
support for people with dementia and their environment, advocacy and working towards a dementia-friendly society. Every year, on September 21, there is a worldwide special
attention to dementia. In the Netherlands, this year’s theme is ‘Together on the road’, with activities all over the country. Curious? Check Alzheimer-nederland.nl
In other languages
Alzheimer Nederland offers advice and support, also in other languages. For more information, visit Dementie.nl/turks or Dementie.nl/maroc. Here you will find brochures in Turkish and Arabic, for example.
PRODUCTION & TEXT: MARJOLEIN KOENS | IMAGE: MARK UYL
Read more?
In Sentence 11 the stories of three more duos living with Alzheimer’s. Now in store, or order it online here.