Ever since her mind was affected by Alzheimer’s disease, the mother of theater maker Adelheid Roosen has responded from her heart. For the first time in her life.
Adelaide Roosen (51):
“Since my mother has dementia, she has been open to collaboration. Before that we were in a tight straitjacket of rules and lifestyles. She was the mother, we were the daughters. There was no space in between. Now I can often laugh with her. She hasn’t necessarily changed—she still grumbles at me from time to time—but her facade has faded. When we communicate, we do so without interest or noise. The ‘attack and defense mechanism’ that has always been between us is gone. Moreover, her behavior no longer goes through a sieve of correction, it is pure. I see an egg opening. I don’t see my mother disappear, but appear. Like an authentic being that does what comes to her mind. She unabashedly enjoys a box of chocolate, wipes her plate with her fingers, empties her glass.
She never did! To drink a glass is not civilized. This being in her that is now indulging in all that food is someone who has always lived there. She was only corrected. Alzheimer’s has made her more unrestrained, boundless. Every now and then when I look at her, I get moved. I see – I say it carefully so as not to scare anyone – freedom. The corset has been shaken off. My mother knows very well that we belong to her. Though she doesn’t always know I’m her daughter. Sometimes I am her sister to whom she talks about her two daughters. My mother has aphasia. You don’t understand her very well. Sometimes I don’t know what she means. It is then important to remain calm, not get irritated and just keep talking to her. That stimulates her, because suddenly a clear word comes across her lips.
The beginning
Shortly after my father’s death, my mother started to suffer from dementia. He died thirteen years ago after a medical blunder. His death came as a complete shock to my mother. My father wanted to be buried in Brabant, close to his parents. He had already bought a grave there. My mother knew nothing about this. In all her grief, the day after the funeral, she put her house up for sale in order to live near my father’s grave. She wanted to be close to him in case he wanted to visit her one evening. For my sister and me, these were the first signs of her confusion. Of course she regretted her announced move. I have offered to turn everything back. But she persevered. This new living environment has accelerated Alzheimer’s. She started forgetting things, suddenly lost things, took better care of herself and one night she locked herself in the garage of her apartment. Without thinking, without knowing how she would react, without expecting anything, my sister and I held out four arms to her. Since then there has been a very intimate contact between us. Something that makes me very happy in this last phase of my mother’s life.
The relationship I had with my mother was never really good. Probably because we look alike. Outwardly, but certainly also internally. We used to have constant conflicts. In her eyes I wore the wrong clothes, I made the wrong decisions, I had a cheeky mouth, I chose the wrong study and so on. It was intense. What do you want. We are both temperamental women. In my time I was able to completely surrender to what I wanted to do, not my mother. In retrospect, she clearly paid a price for the time and environment she was in. She comes from a wealthy family. Her parents gave her an education. She also went to Brussels and Paris after high school to learn the French language. After that, she was never able to do anything with her education. Instead, she married my father, had us and stayed at home. That’s how it was at the time. As if it were a kind of natural bliss for the woman.
Change
Now I think: it must have been a disaster for my mother. She wasn’t forced into anything, least of all by my father, but she conformed to her fate. Not that she agreed to everything; she was a strong personality. But she lived her life the way she was expected to. She was strapped in a corset. In the end, it made her a formal woman. And an incredibly strict mother. Almost tyrannical. “These are my rules. If you don’t like it, you’re out on the street.’ Like this. I had already made peace with the fact that our bond was not good. It is something you accept as a fact at some point in your life. I just came to visit her, but there was always reservation and that changed now because of her illness.
I usually react intuitively to her dementia. Sometimes I make things lighter, simpler. Sometimes I honestly say what she’s doing. That sometimes brings humor. For example, my mother once served a slice of steak smeared with butter with a cup of coffee. I then said, ‘Gosh mom, where did you get this? What is it? Pastry, a new kind of delicacy? Do I want one more, please. It’s very special.’ My mother then went to the kitchen completely happy, while I hid that steak in the planter. Why should I upset her? I do not deal with her because she is in her own reality. It only makes her rebellious or upset. As a child, that is largely in your own hands.
“Hey mom, come sit with me”
I have discovered that we have an enormous power within us to empathize with another and to act accordingly. I once sat with her on the floor with all kinds of papers and papers around me. We had just explained to her that we wanted to do everything in folders so that she would have a better overview. At first she seemed to agree. Not for long. While I was busy with the administration, she suddenly rushed towards me suspiciously. With a look in her eyes like: what are you doing? What are you meddling with? Those are my papers. In a flash I saw an image from a cartoon in which someone stops a bullet being fired at him with his hand. I realized at that moment: I have a choice. I can drop my imaginary hand now and that bullet will come in with all its negative energy. Then I argue with her again as I always have. But I can also leave the hand up and look past it, at her. When I do that, I see someone who isn’t necessarily negative towards me. I see someone panicking. It feels: I’m losing, help, what’s happening to my brain. I chose the latter option. “Hey mom, come sit with me and see how nice this is. You have tabs. Look.’ She melted. My mother turned like a leaf on a tree. A breath of fresh air.
No man’s land
I’m not saying it’s always easy what we’re going through with our mom. It is a mental challenge that is not accomplished without pain and sorrow, but you should never dwell too long in life or long for something that has been. Keep going to the next station or you’ll torture yourself, is my attitude.
My father taught us at a young age: ‘Accept that you lose things. The moment you do that, your hand is empty and something new can come in again.’ A person has the ability to move with unexpected events. That’s what I’m trying to do with my mom now too. When I’m with her, I step into unknown territory. A kind of no man’s land that I didn’t know existed. That no man’s land is now our playing field. I consider it a gift. I used to go to the museum with my mother or drink coffee at the Bijenkorf, now I enjoy taking a shower, listening to music, taking a walk with her. That’s wealth.
My mother lives in a small-scale housing for people with dementia, the Czaar Peterpunt in Amsterdam. There she can be who she is now. Before that, she was in another nursing home. After a fall that put her leg in a cast, my sister and I decided it was best to leave our mother on the floor. She felt comfortable there. Shuffled around, picking fluff. We thought it was safer. Something as simple as wanting to sit on the floor met with enormous resistance from the management. What would the other visitors say. It would get them bad publicity. We decided to remove her from there and since then she has been in this pleasant environment where nothing should or is imposed. She feels at home. Me too.
A while ago I sat at the table with her. Suddenly she placed her hand on mine and looked at me very intently. For minutes. Suddenly there was that concentrated attention I once craved. She kept looking at me with that soft look. Then she said, “Are you okay?” ‘Yes’, I replied, ‘I’m fine.’ She nodded with satisfaction. The incident made me emotional. I never expected to experience that with her. And she with me. I’m not sad that it’s only now – now that my mother’s brain is functioning less and less – that we have managed to get so close. You also have something like the power of a heart. That speaks louder now than before.”
‘Mom’
Adelheid Roosen made the documentary ‘Mam’ about her mother with dementia. ‘Mam’ was nominated in 2009 for the IDFA Award for Short Documentary and will be screened on 1 June 2010 in the Rode Hoed in Amsterdam during the manifestation ‘The Other Side of Dementia’.
Dementia brings families together more often
According to Marco Blom, psycho-gerontologist and director of Research and Policy at Alzheimer Nederland, you often see that parents and children come closer to each other when the parent has dementia. This is partly due to a character change that occurs in the person with dementia, but the interaction between patient and family also plays a role. Blom: “People with Alzheimer’s often react very directly because they lose all social norms and values. Sometimes that works out well, sometimes it doesn’t. Predicting how a person will be as a person and react to circumstances once he or she has Alzheimer’s is virtually impossible.
What you often hear from stories of families is that they are especially surprised how father or mother has become. That is not so strange. When you’ve had a considerate father for fifty years and you see that change, it’s shocking. Yet you could say that someone can never show behavior that has not already been there. This certainly applies to people with dementia who have generally become milder or softer. Usually there is an explanation for this sudden mildness. Perhaps they used to have a status to maintain or they bore responsibility.
Now that things like that disappear, you see different behavior. Incidentally, with aggressive people I have less tendency to say: that was always there. The anxiety, confusion and frustration caused by the disease make people with dementia become aggressive. It is therefore important that the environment asks why a person with dementia reacts the way he does. Immerse yourself in the world of dementia. A person with dementia usually does not do something to disturb his or her environment. If you know this, you already come to a completely different basis with each other. So you have to ask yourself with everything: is it the disease that says something to me or the person?”
Together
The big advantage with Adelheid Roosen is that she accepts the disease. If that were not the case, she would still be fighting with her mother, Blom agrees. “Instead of fighting, space has now been created to see the person behind that disease, and explore what she needs. The trick is to see what you can still do together. That way you build a new, sometimes even more intimate, relationship. I regularly hear stories about people and relatives who always operated aloof in a family and came closer in this way.”
Sources):
- Plus Magazine