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