ACCEPTANCE

ACCEPTANCE:

How do you mourn the loss of someone who has not yet died?  I’m genuinely posing the question cause I’m struggling to grasp the concept. That is kind of where I find myself now. I am trying to come to terms with the whole idea that my dad is slowly but surely removing himself from the corporeal aspect of human existence. It’s as if a switch has gone off in his mind. A sort of acceptance, he is starting to let go of that fear that has been captivating his everyday life. Fear is a deadly feeling because this emotion I’d say is one of the most powerful of them all as it has this compelling ability to take control of us without us even being aware of it. Fear not only holds us back, but it prevents us from truly living. So, you go about each day restricting yourself because you have allowed fear to take control of your life. So, what happens when you eliminate the thought and sensation of fear from your mind, well I would undoubtedly say, LIBERATION. And people can feel liberated in many ways. However, I do not think many humans associate death with liberation. And to be honest it wouldn’t be my first thought. Yet, when I contextualise my dad’s situation I suddenly see how death and liberation can go hand in hand. Now I am sure this might come across to many people who are reading this as unsympathetic or harsh, like “how could you wish for death upon your dad?!!” but see that is not what I am trying to convey. And might I say this is my blog, an expression of my feelings, my personal diary which I am openly sharing with others so if at any point you feel my writing is offensive or too blunt to digest then simply do not continue reading. However, with something as brutal and life-changing as dementia, I refuse to sugar-coat any aspect of it and thus to say that I would want my dad to live on for another 10 years would simply be coming from a state of complete and utter denial which I believe I am not in. It’s been a challenging and weird process trying to find the right words to say and how I would like to tell his story. When I started writing for the first time I had an overwhelming state of emotions and feelings and thoughts about my dad and the situation at hand and I thought by writing that I would be going on the journey of acceptance and self-reflection of something that has become so familiar to me. But, over the past 3 months, or rather since I last wrote, I’ve had a shift in thought. Since the beginning of 2018, my dad has transformed into a completely life-dependent figure. To put it simply it’s as if you have a grown child. He wears nappies/diapers, we feed and bath him and even speak to him in a child like manner. My father, Michael Andrew Rubesch, former soccer coach, husband and father to 3 no longer exists. He is so removed from who he once was it’s almost impossible to look at photos of him a few years back and recognize the same man. Yes, you can speak to him and recollect his thoughts on people and places and experiences and to some degree he will remember and respond and maybe exchange a laugh or two, but there is no longer any aspect of a relationship to hold onto. We, his family are his care-givers, all living our own separate lives, myself in particular, and fending to his every need and simply just continuing with our lives with the exception that we have a demented human in the house who is kind of dependent on us for everything, totally normal I know right? But, to some degree it has become normal as this is the situation we have at hand and I think every-one of us is handling it very well, especially my incredible mother who has practically devoted her life to caring for my dad. At the beginning of the year Mike started having psychotic outburst and getting fixated on certain ideas such as, “He’s killed a man, the police are coming” – He would shout the house down, spit in our faces and grab our arms with such aggression, something words can never truly justify unless you have experienced it first-hand. Thus, with such outbursts the situation reached levels that were outside of our control and we decided to seek medical advice. The Doctor took one look at him and said that this man needs 24/hour supervision. And then it hit me like a thousand trucks driving at 120 km/h on the freeway that my dad has reached that point and it’s only a matter of time left.  After a series of events we were finally able to find a medication that was able to keep him sedated to avoid anymore psychotic outbursts and to further instil a sense of calmness and peacefulness within him and our overall living environment. Since then its been much better in terms of calmness and our care for him, as he has reached a point where he lets us help him. He no longer fights or restricts, he accepts the best he can. He stays in one room where he sits and listens to music and sleeps. We still take him for walks in his wheel-chair and shower him with a chair that he sits on in the shower and he will alternate between sitting outside in the sun or in his room, but we limit his movement and activity to the bare minimum simply to not confuse him. We feed him in his room and basically just do the best we can to look after him. He furthermore sits with his head slouched down, and just exists. There are beautiful moments where communication will be taking place and he will make a sudden response or say something to let us know he’s still there and, on some level, I know my dad is still in there somewhere even if it’s only for that second. I will go into his room and rub his feet and ask him about soccer and joke about how naughty he was when he was younger and sometimes he will respond to me or respond to me in the third person not really knowing it’s me, his daughter whose talking. Sometimes you will just get a laugh out of him. Other times a jumble of words. He enjoys chocolates and tots of whiskey. Basically, now it’s just about making his life as simple and peaceful as it can be- but to be honest it is far from a life. His sister came to visit from the States a week ago and what a beautiful experience it was. Just to see someone have such an undying sense of unconditional love and devotion to my dad. There interactions were so organic and gentle, and you could see he understood and knew she was there. It was beautiful and devastating all in one, but as is life. Before this year I had a profound sense of confusion, anger, desperation and frustration towards the situation, but now I have reached a level of contentment and pure and utter sympathy towards my dad. All I can do now is just show him love and devotion and care and just accept that this is it. He will most probably go into a home in the near future but at this point who knows what the future holds. I do become very emotional when I come home and just see my dad sitting there- its heart-breaking, but at the end of the day my life has only just begun, and I cannot dwell. He might not be able to see me graduate or come watch me perform on stage or play for Maties football, but I know if he could he would be there, and I am content with that. There are a lot of things that my dad can no longer do for me but the one thing that he has done is make me appreciate the value of life and the beauty of moments because that’s all we have. These moments of pure impact that define everything and life is all about how we respond to them. My dad’s illness was a huge moment of impact in my life and I would not be the person I am today if I had not had him as my dad. So yes, I might not have a “father figure” present anymore and it does hurt, it hurts like hell, but life is not easy and for some or other reason this is the path I chose, and I refuse to let this define me and my life. I will rise above it and see it as the biggest blessing above all. In closing, I would just like to add that although I intended on documenting my dad’s life on a daily basis, I have come to the realization that there is nothing really more to document or say. I have said everything I need to say, and I feel now it’s just about taking each precious day as it comes. If major events occur, we will keep those who loved Mike dearly, informed and I am still in the process of writing a book but who knows when that will be done, that’s a project on its own. I am content with the situation and I am at peace which is the best place I can be, and thus I have no need to continue writing, at least for now. The blog will stay active as I often write poetry that I will post but for now I’m taking a bit of a break and this is also why I haven’t written since my last post, just because I haven’t really known what exactly I wanted to say.