Parkinson’s is a pain

Living in a household of “special needs” is nothing new to us, my son has Autism.  We have a cat that we are all convinced is brainless, we had a three legged hamster – a topic for another day – and then we have parents who have Parkinson’s Disease.  Well we only have mom now, my father in law passed away two years ago after a long battle with Parkinson’s.

Many years ago, dad started having slight hand tremors and it was put down to smoking and having his wine at night, a good few glasses, hehehe.  But he once had a severe muscle cramp in his back, he thought it was a pinched nerve, he made an appointment with a chiropractor and at this appointment, before the torture session, the chiropractor walked out of the waiting room with dad following behind him to the therapy room.  The guy stopped, turned around and asked dad if he knew that he might have Parkinson’s because of the way he walked…… dragging the one foot a bit more than the other on the wooden floor and the slight hand tremors.  This was the start of a very long journey with Parkinson’s Disease, hospital visits, medication and dementia, the horrible, horrible “essence of a person thief”.  I will never wish Parkinson’s on even my worst enemy.  We battled with dad’s disease for more than 20 years. Until one day, we could just not cope anymore and dad could not tolerate the young lady we hired to help us.

In the beginning it was not bad at all.  Dad could still do what he did before without too much trouble, the only thing that got in the way was the hand tremors and the shuffling of his feet that drove mom mad.  She would constantly tell him: “Doll, pick up your feet when you walk.”  How could she know that it was only the start.

The definition of Parkinson’s is that it is a neurodegenerative disorder which leads to progressive deterioration of motor-function due to loss of dopamine-producing brain cells.  The cause of Parkinson’s Disease is unknown but researchers speculate that both genetic  and environmental factors are involved (Similar to Autism, I know of studies to see if there is a link between Parkinson’s and Autism, maybe we will have some answers soon) , some genes have been linked to the disease.

Primary symptomes include:

Stiffness, tremors, slowness, impaired balance and shuffling gait later in the disease, other symptoms include anxiety, depression and dementia.  ( 03/09/2018)

The symptoms of Parkinson’s gradually become worse over time.  Almost unnoticeable.  It may take years for the first real daily life problem to appear.  Freezing when walking, cannot drink from a full glass or cup without spilling, lifting up arms to get dressed or wash hair in the shower, holding something in the hand while walking, eating without messing, brushing teeth and losing balance and falling often.

The muscles in the body become stiff and the movements become slow.  Processing and thinking processes slow down and the person becomes confused.  Short term and long term memory is affected.

The doctor will prescribe medication to assist with the lack of dopamine manufactured by the brain cells, the medication must be carefully monitored and altered to the level that the patient needs for near normal functioning.  But to get the dosage of medicine right can be a bit tricky! Too much can make the body, specially the legs start moving in a snakelike manner – dyskinesia, too little and the body literally freezes.   Then they have the periods of before they take medication until the medication starts working, almost like a on/off period.  Take the medication too early or too late and it may interfere with the functioning of the whole body, sleep patterns, free movements, etc. Then just when you think its all good and settled, something new crops up.

As dad’s condition got worse, we discovered that he had the added little thing called dementia.  The first time we noticed that something was not quite right was a Sunday afternoon after mom and dad came back from our holiday house in Hamburg, a little rural coastal town situated between East London and Port Alfred.  On this particular Sunday, dad was very excited and told us a fantastical story about tiny people living in the hedge around the house, they had an airplane made from the leaves of the hedge, they lived in little houses inside the hedge and they even had a lion with a mane made from the leaves.  We asked him is he was serious or just pulling our legs, but he was really serious.  We laughed for days afterwards about these little people and their lion.  Little did we know that this was the start of dementia and it is a really scary beast that robs people of who they are and how they see the world around them.  It caused a great amount of anxiety and irrational fear.  In the beginning, we never knew if dad was being serious or joking.

It soon became clear that with dementia, dad’s aggression levels also rose and it became really bad at one point.  We had to watch him closely.  He asked once for lock inserts, it was to lock their bedroom door at night – according to him, mom went dancing every night with a boyfriend, yet she was sleeping next to him in the bed.  He would bring rocks, bricks and sticks into the house and hide them under his bed, to hurt mom with if she dares go out. We had to regularly smuggle his “weapons” out of the room and hide them away.  He would find their collection of walking sticks and carry one around with him everywhere.  Mom became too frightened to sleep at night.  Later when the aggression  became less, other things would take its place.  We had to constantly be vigilant.  Dad would fall easily and got hurt often.  We still have the Dad First Aid box in the house with all the bandages and ointments and plasters.  (I guess one of these days it will be the Mom First Aid box.)

Dementia would lead to paranoia.  He would not take his medication because he thought we were poisoning him and stealing his money. Mom was never allowed to leave the house without him, he had to go wherever she went.

It is really difficult to be a caregiver to a person with Parkinson’s.  The worse the disease become, the more physically and emotionally demanding the care become.  The person with Parkinson’s lose mobility, so dressing, bathing and feeding becomes a struggle.  We discovered that the medicines made dad have very vivid dreams, he would literally jump out of bed in the middle of the night. (Mom would have to struggle with dad to get him on the bed again, she would come and ask one of us to help her when she could not do it by herself anymore.)  The care giver needs to look after themselves very well to avoid burnout.  In mom’s case, it was very difficult, she has Parkinson’s as well, she cared for herself and dad at the same time.

There was also a lighter side to dad’s illness, we had lots to giggle about.  Dad got up to a lot of mischief, he took things and put it in the chest freezer, keys, pens, small things that went missing in the house and would turn up after a long search in the freezer.  He saw and heard things that we didn’t and some of it was pretty funny.  He loved to walk outside around the house, go out the back door, around the house and in through the front door.  One day he stood in the doorway, looked around the house and commented that the guys  really worked fast, they changed the decor in the train carriage so fast.  From that day, we lived in a train.  “The guys” changed the decor all the time depending through which door dad chose to come into the house.  He had conversations with a little girl with square legs who lived under the our dining room table….. table…..square legs, hahahaha.  He also loved to leave sweets, biscuits (we found these later, soggy and covered in ants) and money all over the house.  He saw and heard other people in our house, mostly small children and Americans!  I can only think it was the TV programs my son loves to watch over and over again.  Dad said he left the money for the Americans to please go home and the sweets and biscuits because we apparently did not feed the children. He would also get annoyed with mom and me because he heard a baby crying and we did not give the baby his bottle.  He would walk to our neighbor and insist that they call the police about the vagrant living at the bottom of our garden shooting the puppies.  Oh and don’t get me started about the bunnies living under the kitchen floor making holes with their jack hammers………………………………………………………

Dad loved to nibble.  He loved toast, sausages, pickles, cheese, CHOCOLATE,  sweets, biscuits, ice cream, mac ‘n cheese, salty cracks, etc.  In short, he loved food.  If he was having a bad day, when he was getting agitated and upset, I made him something to eat.  He loved fruit, but could not peel it, so I would peel and cut up fruit for him.  On really bad days, ice cream would fix things.  Toasted cheese sandwiches was a favorite.  Mom used to sit in front of him on a little stool and feed him when he could not do it himself.  I can still “hear” him behind me in the kitchen when I make a sandwich some days.  I can also hear the fridge door open some days and expect to see dad standing there just looooooooooooking at the contents.

Other than falling and getting bloodied and hurt often, he gave us one very good scare when he had a “freezing” incident which caused a car accident in the middle of the intersection at the top end of our road.  The car was written off, dad was never allowed to drive again and from then on-wards we chauffeured him everywhere he wanted to go.  He really loved to go for drives all over the place just to see the sea.

Moving dad to the frail care center was a very difficult decision.  We looked at a few places, discussed the pro’s and con’s and finally made a decision about the place best suited to dad’s needs.  We did not do this just because we wanted to, we simply could not care for him at home anymore and it turned out to be for the best in some way.  I said goodbye to dad on the Wednesday morning he went into the frail care center.  I had to go to work in King Williams Town, mom and my hubby went with him.  Mom was asked to give dad a week or two before she visited him again to give him time to settle into the center.  But the next afternoon my husband got a phone call from the center to tell him dad passed away peacefully during his afternoon nap.  He was a good husband (mom and dad was married for 51 years), he was always a busy man, an entrepreneur, a business man, a friend and best dad to his kids but his time to rest also finally came.

Now we need to look after mom with the same care, love and respect we always showed dad.  It is not easy to see mom going down the same path as dad.  Mom does not have dementia, her memory is not as good as it used to be and her mobility is affected a lot now.  She also shuffles her feet now and dad is not here to tell her “Doll, pick up your feet when you walk” or “stand up straight” when her back starts to bend one day.  We love her and she will stay with us until we need to make another painful decision one day.

Parkinson’s Disease may be part of the Bruce-Alexander genes, we simply do not know who or if it will pop up again but we watch the B-A’ for the shakes!  It just seems that with hectic stress, they ALL shake a little.


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