There was one thing I was sure of: I never wanted to be a young mum. Because I am too volatile and I constantly have this insatiable desire to see the world. I wanted to run free until I would search for steadiness. However the universe had some other plans for me. I am twenty-five and I have a child. My child is fifty-eight and its my dad.
In the beginning I thought he might just be a little bit distracted. Then I thought he might be an alcoholic and then I thought he is sick for sure. Nevertheless I was praying over and over again:
‘Dear God or Allah or whoever there is to guide us, please don’t let it be Alzheimer!’
After countless of medical consultations, we had our answer. The universe was not listening to my prayers and from now on Alzheimer should be our companion. As I already said: I am a volatile person. Consequently a steady companion (Alzheimer) is more than frightening. But I guess we are just really powerless regarding most things in life. I love my dad, so the only possibility was to accept Alzheimer as a new member of our family. I was ready to do everything to make him feel better.
Mentally, I am comparably strong. I can deal with a lot and I am a positive person. But Alzheimer really tries to break you. The worst thing right now is not that I am losing my dad. That pain is nothing compared to the pain I feel, when I see the fear in his eyes. The fear of losing control, losing his mind, losing his memories, his authority, his words. The fear of losing all of the possible reasons to live. And even when we are on a right track to deal with it, it fucks up his mind again and again, because he forgets that he went through these thoughts before. So it is not as if you’re suffering, then going through a process of healing and being wiser afterwards. It is a constant rollercoaster of the same thoughts. And for me it’s just frustrating, doing as much as I am capable of, with no results. I start from the bottom. Every day. This frustration is omnipresent. I have to remind myself that it’s not my dad who is making me angry. It’s our uninvited guest who is trying to let my dads last reason to live, the beloved ones, disappear too.
Now, as I am already living with this Alzheimer companion of my dad since three years, I still don’t really understand it. What exactly is Alzheimer and what does it want from us? What is its purpose? How does it select its victims? How can I change myself to accept its presence? So many questions which seem to stay unanswered forever. But I also learned a few things through the process of the last years. Alzheimer is an increasing disease and more and more frequently it also affects younger people. Probably we can’t change the reasons for the increasing emergence during the next years. Therefore we would have to change the whole way of living and working (I hope it is going to change, but that is another topic). However, we should really change something in the way we treat people who are suffering from Alzheimer or Dementia. We have to imagine how they feel. Everything is taken from them. Their job, their autonomy, their confidence, their independence, their optimism. And after all the loss and all the emptiness in life, the only thing the society is doing, is to wait until they can’t live alone anymore and then deport them into a retirement home. I had to take a decision too. It’s impossible to say what’s right and what’s wrong. Either you put your love into a retirement home and you have to deal with the compunction about the deportation or you take over the care and sacrifice your life. And with that I mean your whole life — your time, your energy, your emotions. Because Alzheimer can make people mean and irrational. Consequently there is a high probability that Alzheimer will make your relationship suffer. So surprise: There will be compunction too.
Alzheimer is more than a slow killer. It also strives to destroy the people around the sick person. I already had the feeling of dying inside a few times, but I am still here and I am still not done fighting. If I can’t change the way we treat Alzheimer people during my dads life, I want to bring awareness for further sufferers. There is a need to create tasks for newly diagnosed ones. They lose all their purpose in life and all the society does, is to let them wait for their death. Nobody wants to wait for death. Alive or dead, but not in between for an uncertain period of time. The first years after diagnosis they are more than capable of doing simple tasks. Cutting vegetables, helping cleaning, playing with kids, removing goods. How much more bearable this disease would be if they still have a function in society. And when the sickness reaches the point of not being able to do small tasks anymore, the ability to fully reflect the existence is gone anyways. The current situation of handling the life of alzheimer and dementia patients however, seems like torture. We force them to live without any purpose and pumping them full with medication to extend the period of empty existence. Nobody wants to live without meaning.
If I had known before how mean, cunning and emotionally destructive this companion is, I don’t know if I would have been strong enough to go through that process. I miss the happiness in my fathers eyes, the easy confidence and the lightness. I miss my dad. If there is a way to facilitate that process for any afflicted, even when it’s just a tiny improvement, we should consider it.
