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??!!

FOR MY DAD, FROM YOUR DAUGHTER

    HEXAGON

  You are shaped to pure
                                                               
  perfection
                                                       
  In your abstract purity

  At every corner you represent

  a breakage from the scene

  That life so purposely forces
  onto you

   For you are not as simple as a

   Circle

   And a triangle, far too lean

   Communication, union,
   balance, you have lost so
   effortlessly

   You epitomize the inability to
   be simple

   You strike out at every corner

   Yet, in a triumph to not wander
   too far

   You return

   And,

   with it

   complete a whole

HAPPY 60TH BIRTHDAY!

My husband turned 60 on Friday!  I organized a small gathering for him.  He was very reluctant about this, but actually landed up enjoying it!!!

WE SURVIVED THE MALL AND A NIGHT AWAY!!

Well, we survived out trip to the mall and actually the most stressful thing was our two boys scrapping at each other - ha ha!  We managed so much better in his new car and he seemed a lot more content than usual.  Once or twice he was a bit confused and wondered where he was.  I was worried about the apartment we were spending the night in, as we had to contend with 2 flights of stairs, but we managed that as well!  This morning was an early riser as we had to be up by 5:15 am to get our youngest son off to boarding school, but my husband was an absolute champ!  The wheelchair was a huge help.  It is one we are renting from the Red Cross but it is rather primitive.  So...we are looking into buying a new one which will make his Alfa even more fancy!

TAKING ON A NEW LEASE ON LIFE

Whether it's an Alfa Romeo, Cadillac or BMW, who cares!!!  Besides soccer and music, he absolutely loved cars and loved driving them.  It devastated him when he could no longer drive and he has talked a lot over the last 2 years about his cars.  Yesterday I believe we hit the jackpot! I told him that I was going to rent him a wheelchair, so that we could take him on walks and wheel him around the malls.  He was dead against the idea but I went and got it anyway.  I took him for his first walk in it yesterday, just about killed myself in the process, as we live in a very hilly suburb........what a workout! He absolutely loved it and last night had such a grin on his face, he thought he had been driving his Alfa!!!!  Today I took him to the beach and he loved that even more.  This has opened up a whole new lease on life for him, especially as he thinks he is driving again.  On Sunday we are braving the mall and a night away and will take his new car for another ride.

WHERE DID THE TIME GO?

I cannot believe it has been almost a year since since I wrote about my husband's illness!!!  The last time I wrote, he was able to climb stairs, walk up the road with my son and our dog Lucy and feed himself.  A lot has changed........he is now very frightened of stairs and we do not take him upstairs unless we are having a family gathering but even this is a mission, as large gatherings are just too much for him now. His mobility has worsened and the walking has come to a minimum, although we do try to take him a couple times a week up the road, but that is all he can manage.  We now take his meals to him and I cut the food up into small pieces and feed him.  He still enjoys his food and I try to cook all the things that he loves.  Once a week I take him out for pizza, but we go very early so that the restaurant is still quiet. No more grocery shopping with him, as the stimulation is far too much. We have also started to bath him in a lower bath, as the bath in my bathroom is now too high for him to lift his legs over.  We now also use a jug for him to urinate into as it was very difficult for him to aim with his spatial issues.........one has to see some humour at times!!   My special needs son plays a huge part in his care and it has also given him a purpose, although, us carers tend to take a thrashing from time to time.  He still sits in the sunroom and listens to music and the tv, although I don't think he actually focuses on the tv, it is more background noise. He has become obsessed with his clothes and thinks that people have taken them.  I try to take him to his cupboard and let him touch his clothes and this seems to help for a short while until it starts all over again.

It is hard to take him away for a night or weekend as it has proved to be very disrupting for him and we are in the process of getting extra help for him, in order to be able to take a break and get away for a night or weekend if need be.

But despite this all, he seems content for most of the time, although can have angry outbursts, but I think I would too if I was restricted in this way.