MUSIC IS HEAVEN

 Yesterday I decided to sing to my husband. I was in the choir at school, so hopefully it was a pleasant sound to his ears...ha ha.  It seemed to soothe him and honestly it made me feel wonderful too!  I think the power of music is so important.  Music was one of his passions and he has a great collection.  I am planning to put a list together and play his favourites to him often....

ICE-CREAM AND CHOCOLATE SAUCE

 I have watched the stages of this illness in it's entirety and my husband is still "existing". Since I am with him all the time, it is hard to see the changes as much as others that don't see him as often, however, I do see subtle changes.  It has become hard for him to chew now and soft foods are the preference.  He still really enjoys his treats and we try to take him out for an ice-cream as often as possible.  He cannot do anything for himself anymore and is totally dependent on full care.  He cannot speak anymore either, we only ever get the odd grunt and he occasionally gives out a scream.  For the most part he just seems like he is living in another world.  I still speak to him as though he can hear us, as I believe he can.  There doesn't seem to be enough information out there to suggest otherwise.  As I have mentioned in my holistic blog, there are many therapeutic treatments that can help to soothe and we try to massage his feet and neck as often as possible.

Tomorrow we take him for a walk along the ocean and get him a bowl of ice-cream with chocolate sauce....

He so enjoyed his bowl of ice-cream and choclolate sauce.  It is these small pleasures, that are so important.  I used to give him milkshakes, but find it is hard for him to suck through a straw now and it is easier to feed him ice-cream with a spoon.

TIME TO SHARE HIS STORY AND OUR STORY AGAIN....

Well, a lot has happened since the last post on this blog, over a year ago, when Mike had his UTI.  I have been so caught up in caring for my husband, that I have not found the time or the inclination to write until now.....Mike never made it into the respite home and nor did we get that break!!  He was screaming and shouting so much that day, that they refused to admit him.  Instead, they sent him to the government hospital as they suspected that he had a urinary tract infection, which he did.  He spent 3 days in hospital on intravenous fluid until the infection cleared up and then I brought him back home.
My husband is now in about the 6th year of his illness and I was told by the neurologist that his particular type of dementia (Corticobasal Degeneration) has a life expectancy from onset of 6-8 years.  I question all the time as to how the person actually passes, it is still a mystery to me and no-one can say.  I have heard that most get pneumonia or septicaemia or choke.  All are such horrifying thoughts to me and I sincerely hope that he does not encounter any of these.  I watched my mother suffer with colon cancer and it was absolutely horrific, however, the support and knowledge of the illness was available, but with my husband's illness, little seems to be known.  It is truly the worst thing to watch and my heart feels like it is broken in two, watching someone "just exist".  There is no quality of life anymore.  The only thing that seems constant at this point, is that he seems to still enjoy his food and especially treats.

I WOULD LIKE TO INTRODUCE MYSELF

Disclaimer: My Dad is not dead, in the poem I refer to his state of being as once being “alive” meaning that he once lived and now he is merely existing. Once again, I write as a means of expression and to be able to transfer my thoughts and feelings into some form of art. This poem I intend to perform in an upcoming play I am writing and thus it is written in a performative manner.

I would like to introduce myself:

I know you can no longer conceptualize or understand my words I freely speak to you

I know you want to know me even though you do not

So, if you do not mind, I would like to introduce myself:

And maybe one day in some other lively form on some other plane of existence with the energy of a thousand-life’s flowing through your limbs you’ll come across this and remember the idea of me as I paint the picture to you in a thousand different thoughts, emotions and feelings I try to comprehend myself

I would like to introduce myself;

I am your daughter, 20 years of age as I write this

20 years of your life you have given to me, thank you

I’m a dreamer daddy, a dramatic effervescent, over-bearing and complex soul

Restless…

But brave, thanks to you.

You’ve made me strong, maybe sometimes too strong.

I feel, and I feel deeply.

I need to feel, it keeps me alive…

ALIVE!
A.L.I.V.E daddy,

and so are you, at least, you were once…

Alive in the sense of the living.

Once upon a lonesome time you lived

and we knew each other.

But such time has replaced that sense of living with a state of inhibiting existence.  

I would like to introduce myself.

I fear not being ok,

I must be OK.

I will be OK.

You will be OK.

We will all be OK.

I would like to introduce myself

A daughter I am to you

celebrating and championing everything you are and everything you cannot be…

You’ll meet me one day

and then,

I will introduce myself,

to you.

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.

TRYING TO MAKE SENSE OF IT ALL

I have always wanted to start writing about my dad’s life and share his story with the world, I have just never known where to begin. I think the reluctance has been that once you finally sit down and acknowledge something for what it truly is, it is then when it becomes more real to you. Human beings have a natural tendency to avoid and deny many traumatic things that happen to us simply because ignorance is bliss and the truth is, that sometimes it is nice to live in a bit of an illusion that everything is ok.  Everything will be ok but eventually things do catch up with you and as much as avoidance can take us away from a situation, sooner or later there comes a point where acceptance is simply the only alternative. My dad’s story is nothing short of devastatingly heart-breaking and one that I still struggle to comprehend sometimes.  While updating his last moments with us,I will begin my journey of writing a book about his life which will in turn be a way of understanding his illness better and the impact it has had on me along with my family members.  For now, its about letting those who are interested have a glimpse into our world and for me to take note of things that have somewhat just become a regular occurrence to me. To give a brief context, being able to give an exact day, time, month etc. of when my dad got sick is impossible. To be frank I can hardly recall what it was like to know my dad when he was normal. Of course, I can recollect memories of him coaching soccer and taking me to school, but its been a very long time since I remember what it felt like to have a father figure. My dad and I never had the best relationship to begin with. I remember throughout my youth having a lot of anger towards my dad. His energy and time was and has always been invested in soccer. That was his life, his pride and joy. I never doubted that he loved me, but I always knew deep down he would choose his work 99% of the time. I firmly believe that the move to South Africa took a massive toll on my dad, one which he simply could not embrace. America was my dad’s safe net, his comfort zone and source of security both financially and independently.  He had his head-coaching profession which to an extent he thrived in, but it certainly did not challenge him the way he needed to be as a 48-year-old. Life is all about choices and the choices we make define where we end up. My dad had the choice to embrace the unexpected and challenge himself to aspire for more or to simply give up. Unfortunately, he chose the second option. He gave up on South Africa before he could even give it a chance. He was not interested in embracing the new, exciting adventure and life that my incredible mother provided us with. A clean slate, a fresh start and a chance to completely re-invent our lives.  If there is one thing I have learnt in my 20 odd years of being around is that you cannot make someone want something they don’t want, they must want it for themselves no matter how much you want it for them. We all wanted my dad to pursue a new and stimulating career in soccer for the youth of South Africans, but he was not interested. His heart and soul remained bound in the USA.  So, to put it simply one day my dad was coaching soccer, taking leadership and control as he did best and the next we were being told that he was having to be removed from the sports facility centre because he could no longer remember players names and co-ordinate his thoughts and motions in a coherent manner. I will never forget the day he arrived back from America after being diagnosed, I looked at my dad and could hardly recognise him, I did not want to recognise him as his new self. When I was 13 he used to drive us to school in the mornings and the one day the sun was shining brightly, and he suddenly almost instantaneously just smashed into a cement boulder on the road! I was absolutely mortified and so embarrassed. After that I started noticing that when he drove he would swerve on the road and often drive on the other side without even noticing. I felt extremely uneasy and unsafe with him in the car. Another incident occurred during my grade 9 production of Grease the musical at our high school where he completely just walked off the edge of the balcony leading into the main hall. He walked straight off of it as if it was continuing on into the distance, not noticing the steps on the left and right hand sides. These were all before his diagnosis but we never really acknowledged something was wrong.  And then....., he was officially diagnosed and so the years went by.  I’d say the first 3 years were more of an adapting phase starting to ease into the illness, unable to drive and preform fatherly functions but still able to formulate basic speaking patterns, coordinate his moments around the house and somewhat have a sense of belonging.  For me, I basically acted as if nothing had happened and continued with my life. I forced myself to stay extremely busy and preoccupied with school activities, socialising and external activities. I seldom was at the house and when I was, I did not surround myself with what was happening.  I guess a part of me was mad but also, I simply was not going to allow this to define me, my life did not have to change, I had many plans and dreams that I was going to follow through with and my dad did not have to be along for the ride. I guess I detached myself from the whole situation as it made me feel like my life was still normal. Very few people knew what was really happening, I guess in a way I also did not fully embrace what was happening. I was very intolerant and irritable towards my dad simply because here I am a 17-year-old who liked to believe I was very independent and self-assured and now I must watch the person who raised me become so dependent on everything and everyone. I just wanted to shake him and be like “get your shit together already!” boy if it was only that simply. And then my matric year came and I had one of the best years I could have ever wished for. It was a year of reaping in every which way. I was so consumed in everything and my little world, that I lost sight of everything that was really happening around the house.  For that year it worked, and I coped very well. Once I had matriculated things started to drastically change. After having such a big high and feeling like a massive fish in a small pound I entered 2017 not realizing how much change was about to come my way. I was starting a new chapter in my life, moving out the house and starting University at Stellenbosch studying my absolute passion, dramatic arts. Lucky right? It was most definitely a year with many challenges and changes but that provided me with so much growth and self-development as a person.  As much as I was able to escape the trauma which my household contained I was also able to take a step back and reflect on what was busy happening in my life. Coming home on the occasional weekends helped me to really embrace my father’s disease for the first time and start to accept its impact on my family life. I would be lying if I said it did not affect me but on a personal level I do keep a fair distance and when I am in Stellenbosch, I leave that part of my life at home.  It’s a very difficult situation you find yourself in, this battle between not putting your life on hold but also acknowledging that things are so different. Going out for a simple supper is not something my family can do nor go on a family vacation or even to friends for a casual braai. It is often just too much stimulation for my dad. Having people or friends over is always a worry because you can never fully be at ease wondering in the back of your mind if he needs to pee or will he have an outburst.  In the past year the deterioration has been radical. My dad is completely and utterly dependent on us for his every basic need from bathroom related needs to eating, cleaning and washing himself and all his co-ordination throughout the house. He literally cannot do anything on his own anymore and he is 60 years old. It is absolutely devastating, there is no other word to describe it. The saddest thing is to just watch someone’s life simply no longer really have any meaning to it. To watch someone, spend day in and out fighting a losing battle, where his days consist of waking up eating the occasional meal, listening to music and watching tv, then going to bed and so the cycle repeats. In the last 3 weeks we as a family have been exposed to a whole new chapter in this horrific mind controlling disease. A sense of fear and UTTER confusion has taken over my dad. He has begun to start talking to himself non-stop. He has created made up figures for himself who he often refers to or speaks to. He can talk for hours on end babbling on about either this fictional character, his friends in America or us, his family. His speech patterns are very staggered and often make no sense. They range from him talking about being scared or needing to protect someone to then sudden bursts of laughter. I am no psychologist or specialist when it comes to mental illness but a part of me wants to believe that the part of his brain that is still semi-aware of what is going on is fighting that part of him that is ready to fully embrace this illness. And so, he has these jumps between his conscious awareness of what is happening to that of his delusional world where all these different things are happening within his mind that none of us can begin to understand. In the last few days he has begun to stop wanting to eat and being frightened of the complete unknown. I guess he is not ready to accept the illness and is fighting at what last sense of belonging and self-recollection he has. He talks in his sleep and complains about people stealing his clothes and often speaks in the 3^rd person.. 

What is he holding on to and why is he fighting so hard? Let go daddy its time now, let go we all love you and want you to be happy and we can see you are not happy in this life. Accept and let go. 

HOW A UTI (URINARY TRACT INFECTION) CAN WREAK HAVOC WITH AN ALREADY COMPROMISED BRAIN

Who would have know that a simple infection like a urinary tract infection could wreak havoc with an already compromised brain!
We have just been through an utter whirlwind of events........about 10 days ago, Mike started to talk incessantly to himself.  At first it was just babble in the background all day and then he became very anxious and distressed, to where us as family members and caregivers, started to reach breaking point.  He hardly slept and kept us awake at night talking non-stop.  I never knew how tiring it could be to listen to someone talk all day without a break!
Last Thursday was breaking point and I called a doctor friend of mine, who suggested I give him 2 sleeping tablets, to give him and us a decent nights sleep.  She said they should last up to 12 hours..............well............they lasted about 4 hours and then he was at it again, incessant talking.
The next day, I knew I had to do something and so I contacted the retirement village within walking distance from our house to see if they could take him for a month, just to give us all a break.  It is hellish expensive, but his wonderful step-mom said she would help pay for it as well as my sister who said she would also cover a month down the line.  This all sounded like a fabulous idea....a break....what did that mean??!!