HD Hindsight

It seemed profound at the time but in hindsight it's just commonsense.  On Tuesday I like to go to the gym before seeing Merv at 10am but the deputy manager invited a Huntington's advisor to Merv's care facility.
I was asked to join the meeting along with the clinical nurse.  There was the regular questions of medication and symptoms.  Then we discussed HD behaviours.  I should have known, I should have figured it out myself.  Someone should have let me know.
During our round table discussion I explained some of Merv's new behaviours.  Like his behaviour at the dining table at lunchtime.  He is happy to eat his lunch getting at least a couple of mouthfuls on his adult bib.  When he has finished his main meal and dessert he shouts out, 'FINISHED.'  I thought it was just bad behaviour but I was wrong.  It was explained that Merv will often feel he is out of his comfort zone and becomes disorientated.  Where had my Merv of all these years gone?  Who is this man who holds my hand, lets me feed him and is overwhelmed by too much noise and movement.
In hindsight I really should have known.

Cruising together in 2008

2 Crashes Post Father's Day

Two crashes in the family post Father's Day.  At least Father's Day was a memorable occasion. Today we had one car crash plus one wheelchair, but firstly more about Father's Day.
Every September the first Sunday is Father's Day in Australia.  Last year we went to a local tavern and celebrated.  I think back and know there are no more restaurant lunches to share with Merv.
This year we celebrated with lunch at the Care facility.  Dustin and Grace arrived at midday and I was on my way.
A strange beginning for our celebration day.  Merv was just brilliant, not a twitter or a jerk to be seen.  He really is a Jekyll and Hyde at times.  Good today and goodness knows what tomorrow will bring.
After present giving earlier in the day Mel stayed behind to watch Crocodile Dundee with her Dad while I was at home putting the finishing touches to lunch.  Merv was going to have his regular pureed lunch but followed with yummy home made cheesecake.
I was putting together pulled pork rolls for lunch.  It seemed simple.  I bought the pulled pork but didn't read the instructions until I was almost packed and out the door.  Oh goodness, I had to either put it in the oven, on the stovetop or microwave.  Definitely not the microwave and my oven is super slow.  I grabbed the frypan, heated up the oil and threw in the pork (after reading the instructions twice), it was already cooked just needed heating to allow the pork to be 'pulled.'  All done.  I had made the balsamic sauce the previous night, the coleslaw that morning and sliced the radish. I then added home grown lettuce as I remembered Dustin is not keen on coleslaw.  I packed the home made potato chips for the dips, cut up fresh fruit and a big pack of chocolate balls.  There were upteen plates, dishes and utensils to be packed.  Oh don't forget the cheesecake please.  Yes all the food was  packed in the wheeled esky and a bottle of leftover but unopened Ikea apple juice plus two thermos, cups and coffee sachets.
One oversized esky on wheels and three bags later I'm ready to leave but I almost leave the esky in the kitchen.  I grab it as well as the bag with the Bingo game.
Fortunately Dustin and Grace have already arrived and help me out with the in-house picnic bags.  The cafe area at the care facility is filled with an extended family taking up all the tables except one.  We place our stuff on it and wrangle a couple of chairs.  Dustin and Mel go and get their father and bring him down in his wheelchair.  The extended family is now smaller in number and we are offered more chairs.
It's no restaurant but I put out all the ingredients for the pulled pork buns and we all help ourselves, pour coffee and eat chocolates while I feed Merv his lunch.  It is just lovely.  Later I cut up the cheesecake which has survived two weeks in the freezer.  It's still yummy.  Merv delights in two portions. The Ikea juice is consumed and the Bingo bag is found.
Mel takes on the job of spinning the wheel and calling out the numbers.  Merv and I share two cards and Merv wins the first game.  Dustin is the spinner next and Grace wins.  We pack up and head back to Merv's room.
It has been a fabulous afternoon.
That was yesterday and just after 9am I received a call from the care facility's nurse.  Merv had woken well only to become agitated and thrashing in his wheelchair after breakfast.  The carer had left him for a minute and returned after hearing a loud thud.  His wheelchair which weighs almost 50kg was on its back with Merv still strapped in it.  The staff used a hoist to lift him out.  I was heartbroken and I thankful I wasn't there to see it.  Extra meds were given to him and by the time I had rushed down he was relaxed sprawled out in his recliner chair.
Dustin rang me after 6pm and said he had a minor car accident in a roundabout.  Neither he nor the other driver were hurt but both cars need repairs.  Fortunately it wasn't his fault.
We have made it to the end of the day.  At least everyone is accounted for and well.  Another day awaits us.

Merv recovered after his fall today

Voices

As you grow older it is easier to reminisce and seek out the most memorable times.  Some of them are full of joy and happiness while others berate you or cloud you with pain.
In my sixty one years there has been so many happy times, whether just waking up and knowing the day ahead will go ahead as planned.  The birth of my children, the coming together of family and friends and the joy of travel, celebrations and events.
The worst time of my life was in 1995 when my Father was dying of lung cancer, Merv was in hospital having an operation and Mel was in the children's hospital with psychosis.  Friends left meals at my door while I juggled work as well as visiting three different hospitals.  It was a living nightmare.  My father passed away six weeks later, Merv recovered completely but Mel has lived with mental illness ever since.
Merv has been in care for six months today.  I am forever grateful he is there, I knew I could not continue to look after him.  I was freaking out on the inside and holding it together most of the time but not always.  I often thought about people I had read about slamming their cars into a tree because they could no longer cope.  I couldn't do that, I wouldn't do that but it didn't stop me from thinking about it.  While I was driving it was never in my head but I knew I wasn't far from breaking point.  The phone call to say Merv had a room available for him was a God send.
Just when I thought the journey was easier and Merv's myoclonic jerks (uncontrolled movements) which suddenly appeared in mid April were adequately controlled with medication he went off the rails two weeks ago.  He has been experiencing   headaches and low oxygen saturation.  Five adults held Merv down to prevent him pushing himself from his bed to the floor.  The ambulance was called and they administered  an injection which calmed him down.  He went back to the facility six hours later. The myoclonic jerking continued while the GP played around with his meds to give Merv control off his body and relief from his trauma.
While I could previously just breeze in and out of his care facility as I choose to each day it is now a new beginning.  I wake each morning wondering whether it will be a good day free of the jerks or will Merv need further meds and calming down?  There appears to be no rhyme or reason to why and when the jerks begin.  It is no easy fix.  My nerves are frayed and my mind is traumatised.  Yesterday he refused to eat lunch but I succeeded in giving him a supplement pudding.  I can't remember Merv refusing food!  His personality is changing with the increased meds.  I am afraid of what is coming.  I know it is inevitable; it is part of the Huntington's journey.  I suppress the voices in my head which bring no cheer and I remember today when Merv smiled at me and told me he loves me.  He ate all his lunch and had no extra movement.  He was having a very good day.  That is so much better than a good memory.  It is fantastic!

Good memories of our holiday in Santorini 2008