"World Champion of Emotions"

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The director David Sieveking has made a film about his mother who has Alzheimer's disease - a love film, he says in the interview.

Mr. Sieveking, your film “Forget Me Not” starts four years after the first signs of Alzheimer's disease in your mother.She thinks you are her husband and herself a young woman, she feels sorry for cocktail tomatoes and eats apricots with butter. How perplexed were you there?

Very perplexed and shocked at first. Fortunately, however, it was a time when my mother no longer took her illness so badly and was no longer so depressed. She had forgotten her forgetting and no longer quarreled with the old self-image, the old self. And she did not have the feeling that she could no longer do something that used to work. She said very simply, 'I can't because I don't know.'

Her mother Gretel, a politically active person, disappears step by step from the normal world. How did she feel about that herself?

This feeling that there is a black hole in her head made her very unhappy for a while. She said a couple of times, 'I'm getting lost.' She felt like she was dissolving. That was a bad period of depression before the medical diagnosis of "dementia" was made.

Her parents were married for 40 years. Her mother says, looking at the wedding pictures: “Really? I can't even imagine that, that might be something! "

Yes, that is an extreme experience as a loved one when a person with whom you have shared your most important experiences no longer remembers crucial episodes in their life. I kept telling her that I was her son David, and she was very incredulous. Once I said to her: “I am your child, you gave birth to me,” and she said: “Oh, you're way too big!” I could understand that, I was a tall, grown man your. My mother always remained charming and friendly, which made it easier for me not to get angry, but to let myself be open to her thoughts.

Is there any point in telling people with Alzheimer's disease how things are?

No, it doesn't really help to insist on who you are and to straighten everything out. I then slipped into the role of my father and represented him at home so that he could go on vacation. In that time, I became her husband in my mother's eyes. She introduced me to people: 'This is my husband'. She also addressed me as Malte. That was the last name she kept. Then that was my father - or me. She seemed comfortable with 'her husband', even if it was me. Why should I take this away from her? Sometimes in the morning I had the impression that I didn't have to explain to my mother who was standing in front of her. And then an hour later she said to me: 'Who are you? What are you doing here?'

If you look too much into the past, you say, you have no eye for the beautiful that is still possible. What did you encounter?

I think you have to get used to the fact that a new person is emerging. And it not only has deficits, but also new qualities. If you just look back and compare how people used to be and what they were able to do in the past, that puts too much strain on the relationship in the present. You could have many beautiful, happy and fulfilling experiences with my mother, for example we went up a mountain in Switzerland and she was very enthusiastic. She loved that before. And in a certain way she was ahead of us because she often lived in the moment, had heightened awareness and was able to express feelings in a very beautiful, direct way. My father said she had paid more attention to the essentials. A doctor once said to me: 'People with dementia are world champions of emotions.' I can only subscribe to that.

Your parents have always attached great importance to your independence. Now your father Malte had to focus his life entirely on your mother. Why did this role reversal work?

Even in the past, my parents did not want to live the bourgeois models of life that were socially recognized. My father remained flexible and said to himself: 'I can do it completely differently now, too.' He started running the household, cooking and gardening and developed really domestic qualities, which we would not have thought possible as children . Taking responsibility for someone else was perhaps a much bigger adventure for him than traveling or teaching and researching abroad. That was what he had planned - but my father had done it all his life. My mother's dementia showed him that you can experience love and partnership in a completely different way than he was used to.

Her mother wanted to lie down, but doctors and therapists recommended all kinds of exercise and stimulation.

When I first came home for a long time, my mother no longer had any great drive to do anything. Most of all she wanted to sleep and be left alone. We then tried to create a situation in which she wanted to live again.

After a week of all-round care for your mother, you were completely exhausted and wondered how your father did it for four years. How stressful is everyday life?

The care of a demented relative is a Sisyphean task that is incredibly exhausting. A person with dementia needs to be instructed in all things that they would not do on their own. Although he can theoretically still eat himself up to the end stage, you have to constantly explain to him how to do it. Or that he shouldn't do it anymore if he has already eaten enough. The normal body feelings such as hunger and satiety are ineffective in many dementia sufferers.

My problem was that I had to constantly work against my mother's will in order to force her to be 'lucky', so to speak. My mother didn't like that at all. It is incredibly exhausting when you have to talk to someone all day long, when you are constantly in conflict and also sad about the situation inside. It would be almost more relaxing to do everything yourself and feed someone instead of instructing them to eat. Because that's how it works in a certain time. But a physiotherapist said to me: 'If your mother puts a cup in the cupboard, it's gymnastics for her.' You have to find the right balance in the care and attention: not to overstrain someone, but also not to overstrain them.

I identified three dangerous scenes in your film: Your mother panicked when she was supposed to swim: “Can we go somewhere where we won't die?” She asked the cameraman. And she no longer wanted to get off the ICE, but at 150 km / h on the autobahn. How good are your nerves?

I didn't find any of these situations life-threatening, but it was certainly not entirely safe. But I think you shouldn't stay at home out of excessive caution with a person with dementia. All sorts of things can go wrong with children, but you don't lock them up at home. The gain in enterprise was convincing to me and far outweighed the risk. My mom was inspired and had fun going out into the world.

That's why I would encourage people to go shopping together, even if an embarrassing situation arises in public. I think you meet far too few people with dementia out in the city. Where are they all actually? One wonders. You read about them in the newspaper all the time, they are said to be millions. Are they all behind closed doors? In any case, nobody learns how to deal with them. If you don't have any points of contact, you also have fear of contact.

Your film does not show one thing: namely, how stressful caring for an Alzheimer's patient can actually be. Why not?

Not everything is shown in the film, it is not a film about dementia or everyday care, but a very individual love and life story. I think, however, that many aspects that have to do with dementia and care are at least hinted at. For me it is actually a film about a family that gets into a crisis and tries to deal with it. What happens when someone in the middle of the family changes a lot? Is there an opportunity in the crisis? I wanted to show that in the years of deterioration in dementia there is always an upward trend. My parents fell in love like new and I also experienced my relationship with my mother in a completely new way.

How important is humor in the film?

Very important! We also laughed a lot with my mother during her dementia. Often people stand in each other's way with a false sense of concern and prevent a good mood from arising, fearing that someone might be trodden on. You may not always laugh at the same thing, but the person with dementia is better off if everyone doesn't look around in the corner and refrain from laughing. People with Alzheimer's are not dull and locked in. They notice this very clearly, even if they are no longer rhetorical and their facial features no longer move as they used to. Often I found my mother more attentive than we, who consider ourselves healthy. She immediately recognized my father when he was in a bad mood while I thought: 'Oh? That's actually true, she's right. '

Your 96-year-old grandmother, your father's mother, asked three critical questions: Should this continue like this - is it allowed to use up a person like Malte - does your mother benefit at all. How justified are these questions? Your answers in the film were for me ...

Unsatisfactory.

Exactly. It seemed to me that you had not asked yourself these questions in such concrete terms.

Indeed. The questions was an impulse to make the film at all. I thought we would soon have two foster care cases because my father would soon collapse if nothing happens. It was about how we can find help in the long term. After all, I didn't want to stay with my parents forever. In this respect, my grandmother's questions are of course very justified. You have to think to the end whether my mother will actually benefit from my father sacrificing himself for her. But I believe that this perspective fails to recognize how much my father pulled himself out of the experience. But that was only possible because he was looking for help, otherwise he would probably have lacked the strength. In retrospect, he says he should have done that a year earlier. Fortunately, we received active support from a nursing assistant at home.

You shouldn't commit overexploitation, that's negligent, but it often happens in home care - certainly also in nursing homes. But my grandmother got to the heart of it, which is floating around in your head, but you don't even dare to say it. She made for a debate among us - around the corner, so to speak.

Most people experience a completely different reality with their loved ones suffering from dementia with anger, aggressiveness and helplessness - how can they also discover love?

If a person changes so much, then the environment must also change so that it does not lead to a catastrophe. You should be open to things that are new and not just focus on what is no longer possible. The contact in our family that resulted from my mother's dementia did not exist before. My parents were never very cuddly with each other, nor did we often lie in each other's arms. But something like that can be demanded by a person who can no longer speak.

If you only book a dementia diagnosis as a nightmare, there is no room for positive changes. To me, a lot of things that someone else might think are terrible didn't feel so bad at all. I'll give you an example: when my mother asked me who I was and I said, 'I am your son David', she replied, 'Oh, that would be nice!' She was very friendly and made you feel very good sensitively offered their view of the situation. I found it hard to be sad or angry. It was like an invitation, she wouldn't mind if I were her son. That's very charming, don't you think?

In any case, Mr. Sieveking, thank you very much for talking to us.

Ingrid Müller conducted the interview.

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